Living Life with E's

A Quote and a Question...

2012-02-07T22:59:00.000-05:00

"I like the person I am becoming." - Maya Angelou

I love to read, I have always loved reading. I can remember as a little girl being completely engrossed as I read about Ramona Quimby and her latest adventure. But, after years of school days jampacked with required reading, then the endless stream of emails in my working years, then the lack of energy and need to just "veg-out" in front of the TV after chasing 3 kiddos around all day, picking up a book has been just about the last thing on my mind. But recently, I have been gradually adding this old flame back into my life.

One of the many things I love, love, love about reading is I learn little things about myself along the way. When I read other people's stories my imagination allows me to be in their moment, to wonder how I would react, how I would feel, what I would do differently or how I would have done things exactly the same way. Reading makes me answer questions about myself that otherwise would go unanswered, undiscoverd.

Today I came across the quote above and how could I not answer it? "Do I like the person I am becoming?" The answer...well, it's complicated and I am not quite finished answering the question in my mind or how I will share it here. In the meantime, how would you answer? Do you like the person you are becoming?

Now these little people...I am sure I LOVE who they are becoming!

Love,

Advice from a 5 year old...

2012-02-06T10:13:00.000-05:00

What this sweet 5 year old little boy told me today...

Every now and then Ethan decides he needs to share the infinite wisdom he has gained in all 5 of his years here on earth. And yesterday was one of those days! So here's the nugget of knowledge I received...in his words.

"Mommy, when one of little kids is getting in trouble or has poo-poo, you should chain them up with these" all said while showing me the handcuffs that go along with his police officer costume! I honestly do not know what to say!

Love,

Trouble!

2012-02-03T15:01:00.000-05:00

This one sure is cute...

...And it's a good thing...

Because this one...

Sure is T-R-O-U-B-L-E!

Eating markers has become a new favorite activity of his...this one can't be out of sight for even a second!

Love,

"I'll Do it Myself"...

2012-01-26T23:10:00.000-05:00

Currently we have a small obstacle in our house when it comes to teaching Emily anything new...The "I'll Do it Myself" monster has reared it's head in the form of our two year old little blonde-haired girl!

Exhibit A

Emily on her way to Mickey D's to get some "ries" as she calls them. This should scare you, she drives like a future NASCAR racer, "Pedal to the Metal" and not a single thought to braking...or steering for that matter!

(disclaimer: no children, animals, nor our home was harmed in the taking of this picture)

Exhibit B

Which one of these things turns on "SuperWhy"? If Mommy won't turn it on, I will just take care of it myself!

All joking aside though...we are having quite an issue in this area. We are working with Emily on eating with a fork and spoon. As of now she will eat with either utinsel for a few bites, but then takes to her cave man ways and eats pretty much anything with her fingers. Using hand-over-hand techniques do not work, she is a take charge kind of girl and does not like to feel like she is being helped. The same thing happens when we try to teach her how to draw a circle, or match puzzle pieces, for example. And who says she won't be independent one day?...it seems that's what she craves...Hmmmm. So, any ideas? How can I help without her knowing I am helping?

Love,

Welcome to the world Michael Shust!

2012-01-18T11:21:00.000-05:00

I know I promised my next post would be Ethan's comments on cancer...but a new little boy with Down Syndrome was born last week and I wanted to welcome him. Though I do not know him or his parents, we are connected by more than just Down Syndrome.

Michael is the son of Comtemporary Christian music singer Aaron Shust and his wife Sarah. The words in Aaron's song "My Savior, My God" have ministered to me many times since Emily's birth and again when Emily fought leukemia...so I thought I would share them with you...

"I am not skilled to understand
What God has willed, what God has planned
I only know at His right hand
Stands one who is my Savior"...

and then the chorus...

"My Savior loves, My Savior lives
My Savior's always there for me
My God: He was, my God; He is
My God is always gonna be"

I count the early days of this diagnosis as some of the most difficult in my life. My heart aches for this family as they work through their emotions and manage their fears against what they know to be true...that God is good, all the time! I know I have mentioned it before on this blog, but my heart does a little happy dance when I find out another family will experience what we have with Emily...the blessing reached on the other side of the grieving is like nothing I could ever explain. Yes, there are days where the effects of Down syndrome seem overwhelming, but they will never negate the love I feel for our precious little Emily!

You can read about Michael here, and of course I am sure the Shust family would appreciate your prayers and words of encouragement and support...I know this is what helped us through the tough days. Welcome to the world Michael Shust!

Leaving you with my current favorite picture!

Emily, with my grandmother, who she is named after

Love,

Catching up...

2012-01-03T15:55:00.000-05:00

Well, hello there and a belated Merry Christmas and Happy New Year to all of you! I am writing this post as a first step to kicking myself in the rear end to get blogging again. With the holidays and an overwhelming list of "to-do"s, blogging became an item that got crossed off my list with a black marker as the days went on. And, now that I have been "away" for so long, I find myself in a blogging slump. When I open up the blogger site I feel like I am meeting up with a friend I haven't talked to in forever and approach the scheduled commitment with a feeling of guilt and trepidation. Before the holidays I was in the midst of working on a plan for a major blog overhaul and became so overwhelmed that I haven't approached the list of things to do to bring the task to completion and reap the rewards of a guest friendly blog. I intended to roll out the "welcome mat" for the new year, but as you can imagine since I haven't done anything...nothing has been done! So, consider this my slightly awkward reaquaintance with this space I call a home for my random thoughts.

So, as old friends do when they get together after a time of separation, an update is definately in order. Our family enjoyed a wonderful vacation back home...which makes me wonder, when will my new place of residence feel like home? When will it be that I find the same comfort and familiarity here that I do when I visit home? When will I call this "home"? We are also celebrating Emily's continued state of remission and remembering that at this time last year, we had only completed 2 of 6 chemo treatments. I feel so thankful that all of that is behind us now, but still get nervous with each monthly blood draw.

Our youngest, Chase, is now 9 months old...I know it sounds trite, but time sure does fly by. I am finding that with each child the time seems to get away from me quicker than the one before and there is this slight fear in me that one day I will be sending my last on their next adventure, and think "what happened, are we already to this place?". Something tells me that no matter how hard I try to savor the moments until then that I will still wonder where my little children went. Ethan is becoming quite the big brother, he is delivering a healthy mix of 2 parts kindness and 1 part torture to his siblings.

It's only January and Emily is already scheduled for surgery. She will have new tubes placed, and her tonsils and adenoids removed (she has mild sleep apnea). I am nervous, but I know this surgery will only put her in a place to continue on her path of success! Emily is really starting to get chatty, she says over 100 words and some two word phrases.. and for me, this is extremely exciting! We do have a lot of work to do in the area of speech intelligibility, but we will get there over time. Emily has also finally decided that crawling is so over-rated and has made walking her primary means of transportation.

So, there ya go...now I am blogging again...not sure why I kept putting it off. Check back here for my next post where Ethan shares on Emily having cancer.

Leaving you with my current favorite picture...until I take another one that I claim is also my favorite!

Love,

Running away from Cancer...

2011-12-07T14:32:00.000-05:00

Towards a Cure...

Since the completion of Emily's treatment for leukemia back in May, I have been searching for some way to take out some of the anger and aggression I feel towards this terrible disease. So, rather than risk breaking my hand while taking out my frustrations on a punching bag, I decided that given my tendency toward unprecedented clumsiness, I should lean toward a safer method! I have decided to run...run away from the cancer mentally, and run towards a cure by raising money to ensure that one day no child or adult would have to endure the suffering this disease is capable of dealing.

It seems that since Emily was diagnosed I am so much more aware of cancer in general. Just about everyone I know has been profoundly affected. The stories of those on the pediatric cancer floor are heartbreaking to say the least. I wish there was a magic pill I could give each one of them, smile and say, "you are cured, now go and enjoy your life!" But that isn't reality right now, but it could be in the future...and that is why I am running!

So, you will notice a new little badge on the right hand side bar and it takes you directly to my Team In Training website. Feel free to visit, read updates on how my training is going, or even donate if you feel led. There is a place to leave comments and words of encouragement are always more than appreciated! I am running in honor of Emily, but I am also running for so many others like Ella Grace, the tillotsen twins, Zoey, McKenna, and of course little Lois, I am running for my Uncle Ronnie who died of blood cancer before I even met him, and there are so many others...unfortunately.

Watch out cancer...here I come!

Love,

Just Pics...well, mostly

2011-11-28T15:12:00.000-05:00

The only way Emily will touch a chicken is if it's breaded and fried...and this one was neither!

Mommy is going to have her hands full with me!

Emily always finds the music even when we are at the park!

My superhero Ethan!

Emily is not afraid of much, she made it to the top of this twisty slide and went down all by herself!

Chase thinks his big brother is hilarious...no matter what he does!

My little tiger

The best picture I was able to get on Halloween, atleast everyone is looking at the camera!

If this doesn't make you smile, I don't know what will.

So that's where my (fill in the blank with whatever item you are missing) went!

Whenever Jason lays on the floor, Emily drops whatever she is doing to hop on the human jungle gym.

Love this picture!

Ethan loves to ~~eat raw batter~~ help me bake, Emily has now joined in on the fun and even used the electric hand mixer!

I know that was an interesting mix of photos...but that's what we've been up to!

Love,

Where did it go?

2011-11-18T22:55:00.002-05:00

Did I miss it...Thanksgiving, that is? I must have, because Christmas, with it's twinkling trees and smiling ginger bread men has kicked Thanksgiving to the curb, and it's not even here yet! Today Ethan and I decided we should make some fall/Thanksgiving themed cupcakes. We went to 2 crafty type stores in search of the perfect embellishments for our icing covered treats. And guess what? We saw tons of Christmas items, but no fall or Thanksgiving at either store! It was lunch time and the kids were starving so we went home and I figured I would try one more store later on.

So, tonight I ventured out and guess what? No Thanksgiving to be found! I searched and searched, not a single brown and orange colored trinket. Until, I walked around the store for a while and saw 3 shopping carts half-filled with fall colored items with big red discount stickers on them. Yep, it's not even here yet and Thanksgiving had been demoted to 3 small unorganized carts parked in the middle of the store.

So, to sparkly Christmas, I am not ready for you yet. Although I am really looking forward to you getting here as I always do, I haven't bought one.single.gift yet! And, you moved in too quickly and I wanted to savor a little more of the fall festivities before you showed up with your big fancy trees and large men in red and white suits. Thanksgiving is so simple, and well...no offense Christmas, but you are pretty needy, I mean I love you, but really... the things that need to happen to prepare for you to arrive are just out.of.this.world! I will be happy to welcome you with open arms the minute Thanksgiving is over, so just wait your turn please.

And to all the retailers out there who "put away" Thanksgiving so early this year, leave just a little out for the mommies out there that decided on a whim to make some pretty awesome pilgrim or turkey cupcakes with her 5 year old little boy...Okay?

On the other hand...I was able to score this pumpkin from the "leftovers", and the red sticker price on this item made me smile BIG! As for our cupcakes, we had to settle for a container of sprinkles with several different colors and we will just use the fall ones, but Ethan is a sprinkle fanatic so he will be just fine especially after his belly is full of sugary goodness!

Gobble, Gobble!

Down Syndrome, the sibling perspective

2011-11-16T16:11:00.001-05:00

This week I attended an organized get together for moms and since Thanksgiving is fast approaching we each took turns sharing what we were thankful for. Of course, I could have given a two hour speech filled with a good amount of sobbing and snot wiping about all the things I am thankful for this year including remission for Emily (woot, woot!) and that we will all get to spend Thanksgiving together (Emily was in the hospital last year). Then it happened...I was completely taken by surprise by someone else's comments. They weren't hurtful in any way what-so-ever and her intention was not poor in nature at all, and I bet she is an incredibly kind woman. But, she shared a little about how she was thankful to be alive after being born extremely premature and she mentioned that her twin had Down Syndrome. My heart skipped a beat and I was immediately excited to meet her after the get-together because I always feel a kinship to those that have experienced DS firsthand in their families. She continued on and was saying there was an individual who told her she would "have a Downs" because of her brother having DS. And she seemed hurt by this person telling her she would be dealt the same card her parents were, and I couldn't help but wonder if her experience with Down Syndrome was not a positive one. And naturally, I immediately thought of Ethan and Chase...

I think I often dismiss the negative aspects of having a sibling with Down Syndrome, while I am sure they do exist...I think I purposefully ignore them. I want to believe they aren't true, that Emily having Down Syndrome will only positively effect my other children. For the rest of the day, I kept thinking how ignorant of me to allow such thinking. Of course, there are going to be challenges for Ethan and Chase that are directly related to Emily having DS. Emily does require quite a bit of our time and attention and I wonder if they will feel slighted in some way. Not a day goes by that I don't wonder if I am "short-changing" Ethan and Chase or somehow "cheating" them out of the childhood they should have. And I wonder as they get older whether they will feel a burden to take care of her when we cannot...even though that will not be an expectation of them. And, I am thankful for this experience that reminded me that I, more than most, have to be incredibly intentional about the attention I pay to Ethan and Chase and not giving Down Syndrome a bigger piece of the pie than it should have.

I do hope to get to know this lady better, and maybe she can share with me about her childhood so that I can understand the sibling point of view better...and climb down from my little house in the clouds where all seems perfect and right in the world and we all eat just-baked brownies and chocolate chip cookies for breakfast, lunch and dinner! I believe it was by God's design that we were in the same room yesterday morning, even if it was just for me to be slapped in the face with reality. I think there is something I can learn from someone who has been in my children's shoes, who has walked a similar path before them. Ideally, if Ethan or Chase were confronted with the possibility of having a child with Downs they would have had such a positive experience in our family that they would welcome the gift they had been given and see it as such...like this family (the writer of this blog has a sister with DS and chose to adopt a child of her own with DS). But, I know that may not be realistic at all...just a wish of mine.

I understand most people don't think having a child with DS is a "good" thing. Recently my husband had a friend who was told their unborn child might have Down Syndrome and inside Jason said he was jumping for joy...but on the outside he had to remember what we felt when we first found out about Emily. And instead of jumping in and telling this person how wonderful their life was going to be...having sympathy for what they will go through to get to the point of acceptance. I constantly have to remind myself that not everyone thinks of DS the way that I do and that forever some will look at our lives and see us as "burdened" or feel "sorry" for us in some way. But I want everyone to know that I do not feel "burdened" and I don't feel "sorry" for myself or for Emily and I don't think we are all that different from any other family raising their children. We all have children with challenges, some are just more obvious than others and some don't reveal themselves until the children are grown.

Just look at her...how could I feel burdened?

Just look at her, how could I feel "sorry"?

Incase you aren't convinced...

I have realized that for whatever reason, which will probably remain unknown to me until I get to Heaven, that God wants me to parent a child with Down Syndrome. Some ask why I am so positive about DS, how I don't feel "sad" about it anymore, how it doesn't feel burdensome, why I wouldn't change it if I could. You see, It's a choice for me...it's a very intentional decision to want what God wants for me even if, at times, it means a more difficult, and to be completely honest, lonely road. So, incase anyone out there is wondering, I want Down Syndrome in my life; I am not just tolerating a circumstance that has been given to our family or putting on a brave face and positive attitude because that's what I am supposed to do. And as we approach Thanksgiving, I want to say that I am truly thankful for a husband that feels the same way and loves our family fiercely for what it is, and not what we imagined it would be when we started out.

Love,

Buddy Walk Video!

2011-11-14T23:32:00.001-05:00

Our Buddy Walk was in early October, so it's about time I put this out there for you all to see. I am falling quite behind in keeping up with this blog, maybe I'll get around to posting Halloween pictures before it's Christmas! I do have a good excuse though, a major blog makeover is in the works and it has consumed much of my time that I would normally dedicate to updating.

To those who walked...

Thank you for being so willing to give of your time and money in order to create awareness for Down Syndrome. Every dollar raised will help Emily and other individuals with DS live a better life, and therefore their families will live a better life. From the bottom of our hearts...we thank you, and we hope you will join team "Emily Rocks!" again next year!

Enjoy the video!

Make a video - it's fun, easy and free!
www.onetruemedia.com

Can it be?

2011-11-08T15:36:00.001-05:00

Can it be that just a few short months ago we were splashing in the pool and feeling the warmth of the sun on our sunscreen lathered skin? Can it be the multi-colored leaves that gave us quite a beautiful show for the last few weeks are falling to the ground soon leaving behind naken branches? Can it be that Christmas is on display in all the major stores? Can it be that I am going about picking out our family Christmas card? Can it be that this time last year we were entrenched in a battle against cancer with this little girl?

Wow, I can't believe this is what she looked like a year ago!

And that this sweet boy had not graced us with his presence yet?

It's here, it's that time of year again! The sounds and sights of the impending holidays are appearing all around and are putting the pressure on me to get organized about wishing our family and friends a Merry Christmas and a Happy New Year. This year we will be sending out many more cards than usual, we plan to send a card to each person that helped in some way during Emily's chemotherapy treatment and we will include a short update on her health and celebrate her being in remission!

So, being the money saving mom I need to be, I will be purchasing my cards from Shutterfly. Why? Well, because they have a gigantic selection of cards at great prices and they have offered me 25 free cards just for blogging about them!

Browing through Christmas cards makes me start thinking about the gifts I need to buy...I have been doing a little too much thinking of what I would like to receive ;-) One of the best gifts I have ever been given for Christmas was a photo calendar with pictures of my niece and nephew, I still have it in a box with my photos because I just couldn't bear to throw it away after the year had passed. Shutterfly has a wonderful selection of calendars, just add your favorite photos and you have a great gift for under $20! And while I was browsing their site, I saw some stationary that I must have (hint to hubby...if you are reading this!) and many other gifts, when you have small children it's nice to be able to shop online rather than risk an incident like I recently had!

I am bouncing between two choices in cards right now...Help me decide, which one do you like better?

Choice #1

Choice #2

The Incident

2011-11-02T22:12:00.001-04:00

I was going to post our pictures of Halloween today and tell about Emily's sleep study, but I was reminded of an incident that happened a few weeks ago by this post and felt an itch to tell you about this experience...and the itch must be scratched! Brace yourself, this is absolutely the truth and did actually happen EXACTLY as I am telling it...aside from a few exaggerations where appropriate ;-)

This may not be the smartest or most convenient way to grocery shop, but it is what we do; Jason and I go together with our three children. I used to love grocery shopping with my mom, and my kids have grown to love it as well. What would normally be a mundane chore I would do on my own while the kids are napping on a Saturday afternoon, we have turned into a fun family experience. We spend enough time taking the kids to separate events/practices out of necessity, and have decided that grocery shopping is something we can all do together. Ethan loves to find the coupon machines and collect coupons for future use (he has been instructed to take only one), Emily loves riding in the cart that is shaped like a car and pretending to drive, and the produce section is a great teaching opportunity.  I love showing her pototoes aren't always mashed and covered with a warm blanket of gravy or that apples have skin on them that makes them taste and look different, and having Ethan weigh fruit, and Chase loves to watch the other kids as they go about their business!

Things usually go well and we leave the store with a cart full of groceries, save a ton of money by couponing, and all the kiddos are smiling from ear to ear eating their free cookies! But, a few Fridays ago, things couldn't have gone more wrong! We purposefully go during non-busy times, usually Thursday or Friday evening when most people have much better things to do than grocery shop! We started out near the meats and cheeses and Jason was pushing our cart-full-o-kids and I was pushing the cart designated for our groceries. Ethan and Emily were sitting next to each other in the car cart making each other laugh and giggling histerically for one reason or another. Jason was organizing our coupons and making sure the kids were behaving appropriately (those are his two assignments when we shop) and he does quite well, I might add!

Jason had fallen a little behind as he was organizing a few coupons and I had gone ahead and was looking for butter with my back to the aisle. When I turned around an older lady (about 65 or so) had pulled her cart up MacGyver style and was blocking me in, and as I went to step around her, not realizing she had purposefully placed her cart in this position, she said "Excuse me, but I just want to tell you that I raised twins and I managed to discipline my children, your kids are all over the place and everyone is trying to get away from you!" (I must mention that only one of our 3 children can walk, so I am not sure how "they" could be "all over the place", and I don't know who was trying to get away from us since the store was not busy at all). So, I could feel my face getting warmer and warmer by the second and all I could manage to utter was "I do discipline my children and you don't know me" to which she responded that I did not discipline my children and ranted on and on about it  and then she started to walk away.

Enter Jason...he could sense by my facial expression (probably my tongue hanging from my mouth in disbelief was a dead giveaway) from a distance that something was very wrong and he asked me what had happened and I told him. He turned to the lady and told her he didn't realize we were in the library and that she didn't know us at all and that she was being a bully by waiting until he was not around to confront me. He also asked her if her children were perfect and if they were all Dr's or lawyers and had made no mistakes and she said "no" and then seemed anxious to get away. It turns out when the tables were turned she was pretty uncomfortable with the situation, interesting, huh?  Anyway, she said she was going to go and report us to the manager and so she did...and about 5 minutes later I saw both her and the store manager and they followed us around for the remainder of our shopping trip.  I could not believe it! The manager never said anything to us, we are loyal customers and spend quite a bit of money feeding our little piggies the food we buy from his store. Meanwhile, she had all of 5 items in her cart and she spent 90 minutes following us around because apparently she had something she needed to teach us!

So, I was pretty upset by this encounter but even more unnerved about the idea that some people feel it is their right to give their opinion to others about their parenting skills...or lack thereof! When your kids are doing something right hardly anyone will take the time to mention it, but when they do something wrong they will swoop in like a crow after roadkill and are ready to devour you to bits with their words! Where were they when your kids were behaving...nowhere to be found, apparently!

I have to admit, I have been guilty of wondering why a parent did not discipline what I thought was a worthy offense. Although since being attacked quite a few times lately, I have decided that things aren't always what they seem from the outside. From the outside you cannot tell that a mother might be a single parent, or that a mother might be suffering from cancer and she is doing the best she can and getting them dressed at all was an accomplishment even though their hair may not be brushed to your liking, the mother may not have had a moment of quiet in months because her husband travels most of the week...and many other situations that just aren't visable from the outside.

What if that lady who had taken 90 minutes of her day to follow us around had spent it instead asking if she could help in some way, or smiling at our children, or asking how we were doing and what our story was...if she had this much time on her hands she could have made a real difference in someone's life and she would have felt better about herself in the end! So, next time you feel your critical self rearing it's ugly head as mine sometimes does, try asking how you could be part of the solution to the problem you believe you are seeing...just a thought.  The woman in the grocery store did not notice how much fun we were having as a family, she did not notice that we were truly enjoying each other's company.

Incase you wondered, we continue to shop the same way, and we enjoy it! Our world has been rocked by many things and that woman was small on our list of inconveniences and her critisism pales in comparison to battling cancer...but then again, she would have known that if she had bothered to get to know us before she made a swift judgement. And if you ask Ethan, he will tell you the opposite, he will tell you that he gets punished way too often and never gets to do anything (Haha!).

I realize we do not live in a perfect world, and that this will likely happen many more times, but my challenge to myself and to you is to try to see past your initial observation of what looks to you like an "unruly child", or a family that just doesn't "have it together", or is "being too loud" and realize it's merely an observation and you are getting just a miniscule glimpse of who this family or this person really is. And, futhermore, if you are not willing to be part of the solution, please don't tear the other person down, it's likely they know they are failing in one area or another on this particular day and it does no good for you to point it out to them, they have probaby already been hard enough on themselves over it and...you might end up in someone's blog post if you do (haha)! I have so many questions in my mind about why women treat other women so poorly, if I had the answers I would share them with you, but I know why men say we are a mystery...because I can't even figure "us" out and I am a woman!

Okay, so let me here it...has something like this ever happened to you, or have you given your opinion when it wasn't asked and felt regret later?

Love,

The Haircut!

2011-10-25T22:37:00.001-04:00

Before I even had children I often heard people say you shouldn't cut a child's hair until after their first birthday. But, it seems as though that rule has been broken in this family each time due to the excessive hair that tends to grow on my kid's heads. After we were finished I had a souvenir bag-o-hair...not just a little ringlet! I have been asked too many times to count where they got all that hair. Both my husband and I have thick hair so I am guessing they got a double dose!

Tonight Chase had his first real haircut...I almost cried, although I have to admit I am glad I can see more of his sweet face! He looks like such a little boy now! An added bonus is that the scales have been tipped in the right direction...Emily now has more hair than both of her brothers!

What do you think of Chase's new "do"?

Before

After

Ok, so I think I may have accidently pulled that little trick used by lots of weight loss product ads. The "before" picture always shows the person with no makeup and frumpy, greasy hair...then in the "after" picture they have their face all done up and their hair looks amazing...misleading, maybe just a tad! Hopefully you will forgive me for the babyfood all over Chase's face in his "before" picture (although when he is a teenager, he might not!).

Love,

"31 for 21" - Levi

2011-10-23T22:56:00.001-04:00

So, I have now officially missed enough days of this blogging challenge that I should call it "whenever I can for 21" instead of "31 for 21"! I have apparently "bitten off more than I can chew"! But, at least I am here now!

On Thursday Ethan came running up to the car with a small tote bag in hand and a huge smile on his face saying Levi was coming to stay with us! I was a little confused because I didn't recall him ever mentioning this new friend but he was apparently spending a few nights at our house! Well, thank goodness he was just a little stuffed lion and not another 5 year old little boy that I wasn't prepared for!

We took Levi everywhere we went and I will admit that I was completely stressed out that Levi would get left on one of our outings and we would have to hang our heads low and confess of the tragic loss of the "class pet"...but amazingly we made it through the weekend and Levi is sleeping in the van tonight so that we do not forget to bring him back tomorrow!

Levi looks a little worse than he did when we got him; he was dragged through the mulch, thrown down slides head first and chewed on by a sweet little teething monster named Chase, but at least he isn't missing any limbs!

(the teething monster...but he's all drool and no teeth so far!)

As a side note, somehow I lost my glasses and I am thinking our little furry friend must have taken them as a souvenir from his stay at our house!

Just wondering, did any of your children have to bring home a "class pet", and if so what was it?

Love,

"31 for 21" - Day 20 She's just Emily!

2011-10-20T23:03:00.000-04:00

I have been asked before what it's like parenting a child "like Emily". The question has been asked in various ways and I have given the short and long version making sure to mention just how awesome she is in so many ways, but also being forthright about the many health concerns and delays. But most of the time I think...she's just Emily. She's the little blue-eyed blond that steals my heart with her smile every day.

I have never known her without Down Syndrome and never will. I am starting to be a little bit oblivious to the traits that to others scream "that child has Down Syndrome". And...I have to admit that sometimes I am even caught off guard when I notice someone staring and I assume I must have toilet paper on my rear end or a large piece of green lettuce in my teeth, because they can't possibly notice she is different from where they are standing.

It's not my intention to minimize the struggles we and other parents of children with special needs experience, but to our family Emily is just Emily and all the rest is just details.

Love,

"31 for 21" - Day 19

2011-10-19T21:57:00.000-04:00

So, I've missed two days in a row of this blogging challenge, it seems as though I am not quite measuring up. I intend to blog each day, but many times things that have to get done stand in between me and my computer and I never actually sit down to write or post a picture. But, tonight, I am claiming some time to get back into the routine!

It's here, it's finally here...Welcome back fall, I've missed you and have been waiting for your return since you left! This is my favorite time of year; It's the the season filled with family gatherings, appreciating the many things we have to be thankful for, and the giving and of course, receiving of gifts.

The return appearance of multi-colored leaves also means those little candy corn pumpkins are back...Ethan and I have already eaten a bag of them! And the sounds of fall that I love so much are back too; My husband watching his beloved football team (aside from the sobbing I hear when they lose!), the crunching of leaves underneath my feet and Christmas music playing while I shop (Ok, so this one isn't here yet, but I am anxiously waiting!)

Fall also means I am looking for some new cold weather recipes! Do you have any to share? I am specifically looking for a good recipe for apple cider (the only kind I know how to make requires just water and a packet of store bought mix!), and a favorite cookie recipe, maybe one with white chocolate and cranberries because that just sounds good to me!

Love,

"31 for 21" - Day 16

2011-10-16T23:04:00.000-04:00

We had such a busy weekend that I feel the need to watch the back of my eyelids instead of this computer screen, so I'll just leave you with a picture or two...okay, maybe three!

This girl loves chocolate...wonder where she got that from???

Such a sweet smile, but at 7 months old there is not a tooth in sight!

What a sweet big brother!

Love,

"31 for 21" - Day 15 - One of Those Days...

2011-10-15T23:03:00.000-04:00

It's been one of those days...but not for me, for my hubby. We had such a busy Saturday planned that he took the liberty of sending me an email yesterday detailing how he thought the weekend should go. Hmmm...so being the ever cooperative, submissive wife that I am, I decided that I would oblige and go with it! But, you know what they say about "best laid plans"...

The first outing on our agenda was the gym. Jason, being the morning person that he is (inherited from my father-in-law, thanks Dad!) jumped out of bed at 7:30 and got ready to go. I said "just 5 more minutes...or not! Around 8:30 I was awakened by a strange ring from our telephone...turns out it was the downstairs phone calling me upstairs...I guess this was my wake-up call from the drill sargent who was anxious to start the day! We arrived at the gym and hurried along so we could leave on time to get to Ethan's 11:00am soccer game. We got to the soccer field promptly at 10:45am...and saw not a soul we knew anywhere on the field. It turned out the game started at noon. I was so glad we rushed around all morning to make it to the field at 11!

So, we re-packed our double stroller, AKA "the tank", with the kiddos and all of the other garb, and made our way back to the car. Our home is 20 minutes from the field, so going back wasn't an option. Ethan had already been begging for a snack so we drove to the nearest drive thru and bought him something for lunch. Ethan sits in the very back row of our van, so sometimes the handoffs do not go smoothly, and sure enough as Jason went to hand Ethan his fries, they flew out of his hand and went onto the floor. Then, Jason decided we had time to get gas and go through the car wash before the game started. Once again, I went with the flow thinking that's too much to fit into 25 minutes, but OK...and as I predicted, we ended up arriving at the field with less than a minute to spare and I end up having to drop Jason and Ethan off, find a parking spot, and lug the kiddos and all of our gear to the field by myself.

The game went well and we arrived home and put all three kiddos down for a nap. Jason had decided he could fit in going to our niece's soccer game at 2pm (it was on the aforementioned emailed agenda, so it had to be done) and still make it back to take Ethan to a birthday party later in the afternoon. I called him at 3pm and asked him "the party starts at 3, where are you?"...he thought it started at 3:30. So, he rushed home and off they went to the party while I headed to a toddler soccer class for Emily. Things went smoothly for a little while...until dinner. Jason was feeding Chase his babyfood and all of a sudden he somehow knocked over his oversized cup of water that was loaded with ice all over himself and Chase. Chase picks up an ice cube and starts screaming because, of course it was FREEZING cold!

We put the kids to bed and we joked that he should just go to bed too before he ended up really hurting himself. We were relaxing in front of the TV sharing a bag of chips and Jason went to stick his hand in the bag and as he attempted to yank his hand out, it got stuck! Were it not for my death grip on the bag because I was starving, the entire bag and its contents would have flown across the room!

I love, love, love it when things like this happen. It makes for really good material later. There are many things Jason takes great pleasure in teasing me about, so this day will be added to my mental file and used at all the appropriate, well-timed moments! He is sleeping right now, so it's probably safe for me to move about the house as I please!

Love,

"31 for 21" - Day 13 Hair after Chemo

2011-10-13T22:26:00.000-04:00

Besides the once a month blood draws, the only thing that reminds me of our battle with cancer is Emily's hair, or lack thereof. But, it seems that her hair has really started to grow like crazy over the last month! Take a look...

At the start of treatment...

Going...

Gone!

This past July...the start of hair regrowth

And now...

Pigtails...HERE WE COME!

Love,

"31 for 21" - Day 12 Wordless Wednesday

2011-10-12T23:53:00.000-04:00

Love,

"31 for 21" - Day 11 The Dinner Table

2011-10-11T22:22:00.000-04:00

Tonight as we were finishing up dinner I grabbed my camera on an impulse to take pictures of what our dinner table experience is like every night.

This is my favorite time of day, it signals the beginning of our wind down and marks the start of our family time together...first we eat, then hubby bathes the kiddos, then family worship together.

We are pretty intentional about sharing a meal together each day. When Emily was in the hospital we made it a point to eat dinner together most nights even if it meant Ethan was out a little past his bedtime or eating our dinner in the ER.

I am trying to take it all in because one day there will be evening practices and a litany of other activities that clutter the schedule preventing this from being an every night occasion.

After Emily was diagnosed with Down Syndrome the dinner table was one true constant and provided the feeling of "normalcy" that I craved at that time.

Because I knew that we were doing what most families in America were doing at that very moment, we were more "normal" than not...we were sharing a meal as we had done every night before Down Syndrome came into the picture...just like other families.

It warms my heart that as soon as Ethan and Emily notice me setting the table they both head to their chairs, they crave this time together too (either that or they are always REALLY hungry!)

And, we are like most families...some dinners are spent disciplining children for putting utinsels up their nose or blowing bubbles in their milk (hopefully this isn't just our family!)

But, most of the time...it is a wonderful ending to the our chaotic days!

Love,

"31 for 21" - Day 10

2011-10-10T22:57:00.000-04:00

I almost didn't post tonight, I am still in complete shock over the loss of another member of the George Family. But I made a commitment and I am going to stick to it as best as I can.

So, here we go..."big girl bed", or not?

We have been comtemplating switching Emily from her crib to a big girl bed for a few months now and are having a hard time actually going through with it. There really isn't any reason to move her to a bed aside from giving her a little more wiggle room, cause she's pretty wiggly! But, for some reason I feel this need to move her, maybe because this is about the age that we moved Ethan to a big boy bed, maybe because I am a little anxious about how it will go so I want to go ahead and "rip the bandaid off"...I don't know.

Emily understands "no" and she understands discipline and is starting to act as though she wants to be treated like a big girl. So, maybe this is one step we can take to back away from babyhood and forge ahead toward being a big girl. Recently we went on a vacation and there was an extra twin bed so we decided to give it a trial run. She tried to climb down at first and then fell asleep...but we had been at a waterpark all day so she was pretty worn out. I didn't sleep at all until I finally got up and moved her to a pack n' play because she was all over the bed and I was so worried she would fall off.

What age do you think is the right age to move a child from a crib to a bed? There probably isn't a "right age"...just wanting to know your thoughts on the matter.

She looks pretty cute in this big 'ole bed, doesn't she?

Love,

Please Pray for the George Family

2011-10-09T23:08:00.001-04:00

I heard today that the George Family has been struck by yet another tragedy, please be in prayer for them. I don't know any of the details but heard from a friend and then read on this blog that their house was burned down and they lost their son in the fire. I cannot imagine, I don't even know how you can grieve the loss of two of your children in a span of a little over a year. My heart breaks for this family, so please be in prayer for them as they walk this path again. I hope I wake up tomorrow and see that this is a mistake and it really did not happen!

Love,

"31 for 21" - Day 8

2011-10-08T16:09:00.007-04:00

So, I missed "Day 7" of the challenge...I have no good excuse, just went about my day and realized at 11:30pm that I had not posted yet, and I chose to look at the backs of my eyelids instead! I hope you don't mind.

So, day 8 brings a video of our first Buddy Walk. I wasn't sure what to expect 2 years ago and to be completely honest I was scared.to.death...excited, but scared nonetheless! Scared of what? Well, of what I might see, rather what I might not be ready to see. Was I ready to see a grown adult with Down Syndrome who couldn't speak and was so far from being independant that it would be discouraging to my already broken spirit...probably not! But I had already invited family and friends to join me and so I couldn't back out at the last minute. So I put on my "I'm doing great face" and went on about the day.

Much to my surprise it couldn't have been a better experience for me during those early days, after all Emily was only 5 months old, so things were still relatively new to us in the world of Down Syndrome. I saw so many beautiful people with Down Syndrome loving life and so many families that seemed to be thriving and it was so very encouraging.

Tomorrow we will walk in our 3rd Buddy Walk and I am pretty sure the excitement will leave me sleepless tonight!

"31 for 21" - Day 6

2011-10-06T23:29:00.001-04:00

Today's post has nothing to do with Down Syndrome because most of what we do on a daily basis has absolutely nothing to do with Down Syndrome. It's a small part of who our family is as a whole. So, today is the perfect opportunity to give our third born child, Chase, some much due attention!

I love this little boy!

I am usually the one that takes all the pictures,

but here's a rare one of Chase and I!

Don't worry...that's just bananas coming out of his nose!

Seriously this kid needs a bath everytime he eats!

At 6 months old Chase has integrated himself just perfectly into our family. He goes with the flow and doesn't seem to mind being dragged to soccer practices and Dr. appointments. He is growing so fast these days, he is babbling like crazy, and can sit by himself. He loves his big brother and sister and is fussy when they are at school...turns out he thinks I am pretty boring compared to them! I am blessed to wake up to his sweet face every morning!

Love,

"31 for 21" - Day 5...She just "fits"

2011-10-05T22:45:00.000-04:00

When we found out Emily had Down Syndrome, I wondered how life could ever feel normal again. Now, 2 years later I can't imagine our life any different. Emily just "fits" our family in so many ways. She compliments our family, she adds to it in a way that's incredibly difficult to describe. Many people have asked what it's like to be the parent of a child "like Emily"...and I have to say, it isn't a whole lot different and somehow it all just works out, because she is a piece of our puzzle and the fit is just right!

Love,

"31 for 21" - Day 4 The Beginning

2011-10-04T23:14:00.001-04:00

Today I was informed of a couple that has been given an increased chance that their baby may have Down Syndrome...and the feelings came knocking, and then banging on the door of my heart and I felt overwhelmingly excited for them, yet these feelings were tempered with memories of beginning our journey with Down Syndrome. While I am at such a wonderful place of not just accepting the DS rather embracing it, my heart aches for those who must experience those early days. I want to run to them and tell them just how wonderful their life with be, that they will learn more about themselves than they could ever fathom, that they will find they are much more resilient than they ever thought, and they will thrive. But, they are not ready in those early days to hear what a blessing their child will be, they have to experience the full gamut of emotions and then finally allow their minds to accept what their hearts are feeling...unconditional love that knows no boundaries.

In the spirit of reminiscing, here's a few photos of the past...

Love,

"31 for 21" - Day 3

2011-10-03T23:09:00.000-04:00

I am so excited about participating in the Buddy Walk this year. Emily was in the hospital last year so Jason stayed with her and Ethan and I participated. Our team name this year is "Emily Rocks!" because, well...she does ROCK! This is a rough draft, but check out this super cute design for our t-shirts, I was so busy working on this that I almost forgot to post something today!

Love,

"31 for 21" - Day 2

2011-10-02T20:49:00.000-04:00

She's walking...but not really...

I find myself growing a little bit frusterated as the days go by and we don't see monumental improvements in Emily's walking skills. She took her first steps shortly after her second birthday and I thought we would be well on our way to independence in this area by now, but we are not. I struggle each day because I know I am not doing enough to encourage her to gain independence in this area. I find myself getting inpatient sometimes and just picking her up and carrying her instead of encouraging her to get up...walk....and then fall...as many times as it takes for us to get to our destination. Right now her crawling is lightning fast and so when she wants to get to something quickly (like a piece of candy dropped by her older brother) she drops to her knees and shimmies her little hiney till she claims her prize. So, there is a bit of an obstacle on both sides...me not encouraging her enough, and her realizing she is a much more efficient crawler at this point.

So, what's a momma to do? I don't know...part of me believes that when she is good and ready and feels steady of her feet that she will graduate from her quadraped stance. But, then another part of me knows that Emily usually needs a bigger than usual "nudge" to encourage her to do something out of her comfort zone. We have all the tools...the right shoes (they even light up when she walks!), suresteps to stabilize her ankles, and all the bribery a little girl could ever want...now we just need a willing participant!

Love,

It's OCTOBER...

2011-10-01T20:48:00.000-04:00

And that means...It's Down Syndrome Awareness Month!

I have decided to partipate in this year's blogging challenge "31 for 21" where I will blog each day of October in order to raise awareness for Down Syndrome. Last year was a little too busy with Emily going through chemo, so I am thrilled to be partipating this year.

I haven't decided what I will write about for these 31 days, I think I will just take it one day at a time...if a theme emerges, Great! But if it doesn't, that's fine with me too! If there is something you would like me to write about, please let me know.

Until tomorrow...

Love,

One Year Ago Today...

2011-09-28T23:53:00.004-04:00

One year ago today marks the day we got "the call"...

the call no one wants, but still waits anxiously by the phone praying it will ring because you just have to know...

the call we knew would likely bring bad news, but were still holding on tight to a microscopic bit of hope that the Dr.'s would be stunned by a miracle...

the call that changed our world with just a few spoken words...

"We have the biopsy results, and yes, it's what we thought...Emily does have leukemia and there are now enough cancer cells to begin treatment and blah, blah, blah...I don't even remember the rest of the conversation after I heard the words "begin treatment" and "leukemia" in the same sentence!

I can hardly believe that was one year ago today, yet the horror of that day will always be emblazoned on my heart and mind. But today, I can look back and see how far we are from that day, how our God and our family and friends carried us through. As I looked at Emily from across the dinner table tonight I was so thankful for the medicine, the Dr.'s, the nurses, everyone that took such good care of her and God for protecting her little body.

Our day went about as it usually does, I hardly thought about the cancer and that's just the way I like it...that door is closed, hopefully forever. Everytime I look at Emily I am reminded of how precious this one life is that God has given each one of us!

Love,

Happy Birthday Ethan!

2011-09-18T20:30:00.000-04:00

Dear Ethan,
You are the little boy that made me a mama and since then you have brought continuous joy, love, and of course mischief into our lives. One day you may be curious to know what you were like when you were 5 so here goes...

Fun Facts about Ethan...

Favorite Foods: white chocolate pretzels, homemade chocolate chip cookies, chicken enchiladas (the ones Mawmaw makes), pizza, and you love to lick the icing off the top of cupcakes.

Favorite TV show: Jake and the Neverland Pirates

Favorite Movie: This changes like the changing of the tides, but for now it is Bibleman, but before that it was The Incredibles.

Favorite thing to do: Play superheros with anyone that will oblige, in fact your daily life is spent talking about superheros or pretending to be a superhero and that keeps you pretty busy these days! Oh, and I must not forget, you love to play Wii whenever Mommy and Daddy give you the opportunity! You are also the best big brother Emily and Chase could ask for, they adore you and I can tell you feel the same way about them.

Sports: Right now you play soccer and love to play goalie and are quite good at it. Although, you can't wait to play baseball so you can be just like your big cousin Ry.

Things you dislike: Long spaghetti noodles that drag on your chin, having to go to bed, and having to go to your room when you disobey.

School: You are in Pre-K this year, your teacher's name is Ms. Jeanette and your favorite activity is recess, of course. You love to swing very high on the swings and you have told me your best friends are Jacob, Matthew and Cora.

Most importantly though, a few months ago you asked Jesus to be your Lord and Savior! I love you Ethan and I couldn't be more proud of the little boy that you are becoming...Happy 5th Birthday!

Superhero Ethan...Saving the World One Smile at a Time!

Love,

Holding Back...

2011-09-15T15:46:00.001-04:00

I am a professional, the official queen, if you will, of "holding back". If there were a sparkly crown designating myself as such, I would be wearing it!

Many times I don't say what I know I should, I don't share things about myself that would be of use to someone else, I don't speak a compliment to someone that is well deserving of my words of affirmation. As a whole, I believe women tend to be professionals at "the hold back"...

We hold back tears out of fear of what others will think. Maybe people will think we don't have it all together, when really...who does?

We hold back from friendships that are in their infant stages because we are too afraid to put ourselves out there and risk rejection.

We "hold back" from intimacy with our husbands for many reasons...not just "headaches"! Maybe our adorable husband left crumbs from one end of the kitchen to the other and we convince ourselves it's a matter of disrespect..but it's not ladies..IT'S JUST CRUMBS and sometimes our husbands are just MESSY!

We hold back from new opportunities because we are afraid we will fail and our efforts won't meet our expectations or those of others.

We hold back from sharing our feelings because it makes us vulnerable, it puts us in a position to be critisized...and who wants that?

We hold back by not volunteering to help another because in some way we feel inadequate.

We hold back from taking risks and then regret it later

We hold back forgiveness because we just can't get over what another has said or done to us even though we have committed similar offenses in one way or another.

We hold back when we should defend another because it would just be too "messy" and we don't want to "get involved".

I could go on forever...as I said I am the official "Hold Back Queen"!

My most recent bout with postpartum anxiety/depression has inspired change in me. I do admit I get a little upset at God for allowing me to go through this with each of the births of my children. Seriously, I threw a mini temper tantrum when I realized that after Chase's birth I was going to have to go to battle again! But, it's during this time that I need Him the most, that I crave His word just to get through the day and it renews in me a deep desire to be the woman, wife, and mother that He has called me to be and I am so thankful to be coming out of it a changed person. I haven't shared my struggle in this area of my life out of fear of what others would think...I held back. But...holding back doesn't help me or anyone else.

I often wonder how many blessings, experiences and people I have missed out on by holding back? When we hold back we deny ourselves and others so many things...there are an infinite amount of reasons we could continue to be cautious, but just as many reasons to embrace the situations we find ourselves in because once the moment passes, it's gone forever...the door closes and all we are left with is regret. So, what or who are you holding back from? Could you wear the crown of "Hold Back Queen"?

And because I can't leave you without pictures...here ya go!

Nothing better than basking in the sun with a homeade chocolate chip cookie!

Now, that's some serious "bed-head"

My fearless little boy, he will be 5 on Sunday!

Love,

Emily and her Glasses!

2011-09-13T15:06:00.000-04:00

At Emily's 2 year check-up with her eye dr. we found out she needs glasses, she has accomodative esotropia (incase anyone out there is interested)...but basically we noticed her right eye would drift every now and then, so the Dr. confirmed that this was indeed the case and prescribed bifocals for her. He mentioned this isn't necessarily a "DS thing"...but a two year old thing, he diagnoses quite a few each day and it's possible she may outgrow the need for her glasses, we hope!

I am sure many of you are interested in whether this feisty little two year old has kept her glasses on...so, here's the resport so far...at first Emily was the perfect little angel and kept her glasses on and I couldn't believe it. For a few weeks she maintained her praiseworthy behavior, but it was too good to be true! Apparently overnight she was visited by the "terrible two's fairy" and once she was tapped with the magical wand, she decided a little bit of autonomy was her first order of business and she is using glasses, shoes, anything she can think of to exercise her "rights"! She takes off her shoes, socks, her glasses...I am just waiting for the removal of the rest of her clothing... and why stop at that...the diaper will be next! I have now added "glasses patrol woman" to my evergrowing list of responsibilities.

I had written here that I was a little discouraged about her needing glasses, it was just one more thing that would make her different. But, it turns out we got her a stylin' pair of pink glasses and she looks adorable...I don't know why I expected any different! Now...if I could just get her to keep them on!

Love,

How Could We?

2011-09-11T11:08:00.000-04:00

How could we ever forget that morning? I remember sitting in our 900 square foot apartment eating cinnamon toast crunch cereal on the couch, one of the very first pieces of furniture Jason and I bought as a married couple. I remember turning on the TV and seeing the images of a once majestic building burning before my very eyes. Then as I sat and watched the coverage... a plane smashed into the second tower and at once I knew, I knew something was very wrong...I didn't know what, but I just had a feeling things had changed forever! I remember tears streaming down my face and not even feeling the need to wipe them away but just letting them puddle on my shirt as I continued to watch as the horror continued, first the pentagon...and then flight 93. I was glued to the television for two days strait barely able to believe what I was seeing and wanting to wake up from this nightmare that our country was now living.

And all I could think about over the following days were the lives that were lost...the fathers, mothers, sons, daughters. Today, it brings me to the realization of how often I use the phrase "have to" verses "get to"...I have to go to the grocery store, I have to take Ethan to soccer practice, I have to cook dinner for my family...when really I should be saying "I get to change Chase's diaper, I get to wipe my children's snotty noses...because I get to wake up each morning and see my husband and children...and even if my job as a wife and mother isn't always glorious, I have the privelege of taking on each day in that role for as long as God allows.

9/11 changed our world forever, it changed families forever as they lost loved ones, it changed the way we live our daily lives. The way we live today serves up constant reminders of that fateful day...I think about it everytime I take off my shoes before going through security at the airport, I think about it everytime I see a picture of the New York City skyline...the void in the clouds that was once filled with two towering symbols of the american dream. That day lives on in my mind as I have watched the losses that continue as we fight this war on terrorism. I feel somber today, but I feel thankful. I am thankful for those that fight to make sure we maintain the freedoms we all cherish. I am thankful to those that have sacrificed their lives for our county by serving, I am thankful to their family members who go to bed each night missing a father, mother or child because they are currently serving overseas.

Today my heart is heavy for those that were lost on 9/11 and for their families, but today I am grateful for the time I cherish with my family. I wish I could maintain this level of realization at all times, being so aware at how fast life can change and wanting to hold tight my husband and children and make each moment count because we don't know what tomorrow will bring. But sadly I know that my best efforts will fail and I will have to continually remind myself to savor each hug from my children and hang on every word my husband speaks because in the blink of an eye lives changed 10 years ago today...the wives who lost their husbands, the children that lost their mothers or fathers, the parents that lost their child on that day would give anything to have just more more hug, just one more word, just one more moment...

Love,

Ethan and Emily Go to School!

2011-08-24T23:17:00.001-04:00

About this time last year we were just about to enter the unknown territory of long hospital stays and medical terminology we thought we would never have to use, much less pronounce. I can't explain how thrilled I am to be starting this school year with leukemia behind us and more exciting adventures in front of us! Last week Emily started attending a mother's morning out program 2 days a week because her momma feels like she needs to play a little social "catch-up"after missing about a year of activities with other children due to her chemo treatments. I was nervous, of course...what if she just can't handle being away from home for a good part of the day, what if she doesn't enjoy it at all? Well, it turns out that while she does love me, she doesn't need me as much as I thought she did... gasp! I kept waiting for my phone to ring asking me to come and get her, not because I didn't think she was capable, but because I guess it's hard to imagine her going about her day without me by her side...don't worry I stopped sulking around about it when I realized just how much fun she was having!

She is blessed to have two teachers that are thrilled to have her in their class and have told me how great she is doing on numerous occasions. Last year I had to loosen my grip on my firstborn and now I guess the letting go begins with my baby girl too!

Oh, how a picture speaks a thousand words...Emily I can't wait to see all "the Places You'll Go"

Emily's backpack was so big I decided we better have her sit for her picture or else I am pretty sure it would have taken her down and all you would have seen was her little hiney in the air and a pretty princess backpack...her hiney is cute, but not nearly as cute as her sweet face!

Ethan started Pre-K this year and he is so excited because there is a computer in his classroom. I picked a 4-day program so we still have Fridays together...I will miss that next year when he heads off to kindergarten...I could get teary-eyed just thinking about it, so that's enough of that!

Chase is super excited about having his Mommy all to himself for a few hours two days a week! Can't you tell?

By the way, We picked up Emily's new glasses today so check back in a few days for pics!

Love,

Guess Who's Getting Glasses?

2011-08-15T15:34:00.000-04:00

Emily is! My guess is most of you got that one right since kiddo's with Down Syndrome are more likely to have vision issues. I took Emily to her eye dr. for her 2 year old check-up and mentioned that one of hers eyes seemed to be crossing inward sometimes and he saw it too...of course he got to use some pretty neato tools to see it and I didn't! So we left with a diagnosis of accomodative esotropia and a prescription for glasses. The bad news is that I still haven't figured out how I am going to keep the glasses on her, she's two afterall! My guess is they are going to end up in one of Emily's favorite hiding places which now include under our ottoman, the garbage can, or possibly the toilet! The good news is she may not need them forever, many children outgrow this condition by the time they reach middle school age.

I have to admit I was disappointed that she needs glasses, it's yet another thing that makes her different than most children...however, I have gotten over it and have decided that she is totally going to ROCK IT OUT in her glasses, just like she does with everything else!

Love,

Daddy's Girl

2011-08-08T23:01:00.000-04:00

Emily is most certainly, without a doubt, her Daddy's little girl...

So, it only seems fair that when she looks like this...

from doing this...

Daddy should have to clean her up, right?

Love,

My Emily, My Blue Rose

2011-08-01T14:36:00.004-04:00

Usually I am not a big fan of email forwards and many times I delete them without reading them, but today I clicked on one that was sent to me by my Dad and loved it. I know many of you may have read this before, but just incase you haven't, I thought I would post it here, and also capture some thoughts milling around in my head.

A Blue Rose
Having four visiting family members, my wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper towels, trash bags, detergent and Clorox. So off I went.

I scurried around the store, gathered up my goodies and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."

It was obvious now, he was mentally challenged and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"

"My name is Denny and I'm shopping with my mother," he responded proudly.

"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Steve."

"Steve, like Stevarino?" he asked. "Yes," I answered. "How old are you Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle.

"You're fifteen-years-old Denny; now be a good boy and let the man pass by."

I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement, because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him.

I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit. I told her that there are plenty of red, yellow, and pink roses in God's Garden; however, "Blue Roses" are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked, "Who are you?"

Without thinking I said, "Oh, I'm probably just a dandelion, but I sure love living in God's garden."

She reached out, squeezed my hand and said, "God bless you!" and then I had tears in my eyes.

May I suggest, the next time you see a BLUE ROSE, don't turn your head and walk off. Take the time to smile and say Hello. Why? Because, by the grace of GOD, this mother or father could be you. This could be your child, grandchild, niece or nephew. What a difference a moment can mean to that person or their family.

Often I am asked why I believe we are blessed by having a child with Down Syndrome. I think some people have a hard time seeing through the medical problems, the delays, and the challenges inherent to raising a child with Down Syndrome. It's a matter of perspective, I believe, that is almost impossible to explain to someone that hasn't been down this road. This story has been hanging out in my mind all day because I can literally picture Emily as my blue rose.

Having a child with Down Syndrome is like looking out onto a huge field of typically colored roses and flowers and not feeling the need to pluck from it that which is different out of fear it will somehow taint the beauty of it's company...But, instead, seeing how it compliments what is around it and therefore adds depth to something that would otherwise be construed as simply beautiful and makes it extraordinary. My blue rose, my Emily perfectly compliments our family and the view is amazing from here. My blue rose may need a little more care to continue to grow, but with the right amount of love and care...it will thrive just like all the other flowers in the field!

Love,

I Know Down Syndrome...

2011-07-26T23:39:00.000-04:00

I happened to turn my head for just a moment to put my wallet into my overflowing diaper bag...and there she was. Four years old...I guessed, with tan skin, big brown eyes slanted in a way that revealed so much, sun-kissed hair pulled back into a ponytail that she adjusted with her hand, revealing the telltale curve to her pinkie finger. In the not so distant past when I saw another child with Down Syndrome it took me a while to decide if in fact this was what I was seeing; absence of nasal bridge...check, upward slanting eyes...check. And...if I wasn't absolutely convinced beyond a shadow of a doubt and I didn't tally up enough checkmarks on my mental list of DS attributes, I would never dare approach the caregiver. But yesterday was different...I saw her with her father and older sister, and I just knew. I waited until the father happened to glance in my direction, and when he did I asked "Does she have Down Syndrome?", he confirmed, and we shared our stories with each other...it was that easy and simply effortless. It's taken me 2 years, but I think my DS radar is working up to par at last.

When I see another child with Down Syndrome out in the community, my heart does that strange flippety flop...it's happened every time without exception. I remain uncertain as to whether it's nervousness or excitement...could it be the excitement is tempered with nervousness? Why, you wonder? Well, I am still relatively inexperienced on this journey with Down Syndrome. I am nervous about what I might see in another child with DS, yet excited at the same time. What if the child doesn't speak well, does that mean Emily won't? What if I get too much of a glipse of our future too soon in the older child with DS, and I am discouraged by it? What if the other parent doesn't wish to share about their life with DS? But once the nervousness subsides and takes it rightful place in the very back of my mind, the excitement surges forward and craves the chance meeting of other children with Down Syndrome and their families. Because even though I don't know what this meeting might reveal about our future and all of the unknowns that are still out there...standing before me is another child with DS, and though I don't know much about this child or their abilities, I do know Down Syndrome.

I know all about the delays and struggles children with DS and their families will experience. I have researched the health conditions that are more common and have experienced some firsthand. I know the grieving most families endure when the diagnosis reveals itself. I know all about the positive reactions from the public as well as the negative. I know all the derogatory terms used in conjunction with Down Syndrome. But...I also know how very much these families love their child. I know that even though their child is not who they thought they would be, they wouldn't change them. I know that most families say their hearts and minds have been transformed by having a child with Down Syndrome and their marriages strengthened. I know the extreme feeling of joyfulness when a child that faces an uphill battle wins and achieves that milestone they have been tirelessly working toward. I know so much more about unconditional love than I did before. I know parents of children with Down Syndrome and the indescribable personality trait that I can't quite put my finger on but can only feel it's presence when we meet. I know that life with Down Syndrome is good, very good.

2 years ago I would never have imagined I would be standing in a Chick-fil-a jumping for joy at the serendipitous meeting of a beautiful little girl with Down Syndrome. Others around me may have wondered what was "wrong" with her while all I could think of was how very "right" she was...created exactly the way she was supposed to be...just like little Emily! I often wonder how I would have reacted to seeing a child with Down Syndrome before having Emily. I thought I knew what it was, what it meant...obviously I didn't, I believed every untruth that could be told. And now thanks to Emily and the many families we have met because of her, I am proud to say that I know Down Syndrome!

Love,

4 Months Old!

2011-07-20T15:09:00.000-04:00

I can't believe it...#3 is 4 months old! It continues to amaze me just how much you can love someone you literally just met!

Chase,

You are positively one of the most adorable little boys I have ever seen...I'm only slightly biased! I am amazed at your flexibility so far, you nap when the other kids do and you are already sleeping through the night...bless you for this gift to mommy! With 2 more shots under your belt (and more tears and another grey hair for mommy) your 4 month old checkup went well!

We learned you are quite a little string bean, measuring 26.5 inches long (95th percentile) and 15lbs, 5oz (75th percentile) and you already wear 9 month clothing. You are meeting all the milestones you are supposed to and believe me, this is not due to a lot of effort on my part...you just naturally get there.

One of the first things people notice about you right now is how much hair you have and how long your eyelashes are. I think God is trying to give me a hint of your personality through your hair...WILD is what comes to mind at the moment!

You are a thumb sucker just like your older brother...did he teach you that while I wasn't looking? We fed you your first bites of real food a few days ago. I think the Dr's recommendation was to wait until you were 6 months old, but we didn't...developmentally you were ready so we decided to give it a whirl. You weren't quite as amused as we thought you would be at first, but by the third attempt you were more than willing to not only eat it, but try to put the spoon in your own mouth!

Your big brother and sister are always so excited to see you in the morning! Emily calls you "Yace" and Ethan calls you Chasey-poo because that's what I call you! Whenever you cry Emily rushes over to pat your back and Ethan can calm you down just by smiling at you. We are so blessed that God chose us to be your parents...even though I am sure when you are a teenager there will be times when you will whole heartedly disagree!

We love you Chase!

Love,

Bloggy Break...

2011-07-07T14:29:00.000-04:00

I will be taking a short blogging break...here are some pics to enjoy until we return!

Emily says she can fill in for me while I am on break...she swears she is totally computer savy

On-guard!

Someone has to do the handy-work around this place...and I gotta wear my dress so I look cute while I work!

Sassy in Sunglasses!

Cheeeese!

Ready for the pool Mommy!

Brothers...

Love,

Still Cancer Free!

2011-06-28T14:05:00.000-04:00

Today we had our first visit with Emily's oncologist since her last round of chemo...and the results are in...we are still CANCER FREE! Praise God for such good news! I haven't really worried too much about the leukemia coming back as I assumed I would...however, I did feel a little bit anxious as we sat waiting for the results of her blood test.

We are starting to really enjoy our life without cancer. We have been able to allow Emily to participate in activities with other children as well as letting her attend her own Sunday School class while we are in church. She is so funny about this, she goes willingly and is excited for the new adventure, but then when we come back to pick her up she is very upset and has a "how could you leave me?" look on her face while crocodile tears fall from her eyes. I think once she gets used to being left for short amounts of time and learns that we always come back for her she will be OK.

It's amazing how much freedom we have gained since Emily finished her treatment and we are enjoying every minute of it. We will be traveling back home to see family soon and we are so excited since we haven't been back for a real visit since before Emily was diagnosed. Thinking about our upcoming plans makes me even more thankful that today brought great news of continued remission for our sweet baby girl...good times ahead!

(A BIG thank you to our fellow warrior princess Ella Grace and her momma Denise for these super cute jammies!)

Love,

Moments...

2011-06-23T16:45:00.000-04:00

Moments...strung together like beads on a necklace. Moments that changed your life for the better...or not, moments that move you to tears leaving remnants of black mascara running down your cheeks, moments you would rather forget...each one succinct and special in some way culminating into the life you have lived so far, an unending string of moments promising to stretch into forever.

I am not the most talented photographer, in fact I wouldn't dare attach that descriptor to the list of adjectives that personify me. But...I love pictures. I love to go back and look at them, imagining my life in those moments, moments that have long passed.

I recently dug out a box of old pictures dating back to the days before every mama came armed with their digital camera in tow ready to fire off a dozen pictures or so on a whim. I dusted off the top of the box and rifled through the contents neatly organized by year and felt myself drifting into the past, feeling for a split second what I felt in those specific moments when each picture was taken.

I approach looking back at pictures like a detective looking for the clue to solve a mystery. I look at facial expressions, clothing, what's in the background, who's there...and I try to place myself in there once again. Rarely do you take a picture of a moment you would rather forget...it's the opposite, you take the picture because you want to capture this particular one forever. We couldn't possibly trust our mind to do justice to some of the most beautiful moments in our lives...our wedding, our children's birthdays, and first soccer games.

Photographs are my link to the past, my way of remembering what once was. Sometimes I look at them with envy of the carefree soul I used to be, the one who's life was so much more simple. But then I look again and see the pieces that are missing...

Yes, I am no longer that carefree girl...I am more. I am the wife of a husband that loves me and the mother to three children who have given me so many wonderful moments captured over the years in photographs that I cannot wait to show them when they get older.

Looking back this is one of my favorite pictures from last year, the smile on both of their faces is the perfect clue to the love these two share for each other. It's hard to believe I am looking back on this moment captured in a picture when it seems like it was only yesterday.

Just out of curiousity and a want to get to know those who follow my blog...when you think back on your favorite picture from last year...who was in it and what does it tell you?

Love,

The Third

2011-06-14T16:10:00.000-04:00

I come from a family of three children, my husband comes from a family of three children, so naturally I have always wanted to have atleast three children. After Emily's surprise diagnosis of Down Syndrome, the unknowns just seemed too overwhelming especially with Emily's possible leukemia diagnosis looming before us. But, as time continued to pass by, Jason and I both felt our family was not complete as it was, and we decided to add a third child and let God take care of all the details...after all, it is His job, not ours. It's amazing how many times I have to remind myself of this simple fact of life.

And now, we have a beautiful 3 month old little boy, and I am totally smitten! He has a head full of hair most grown men would be jealous of, he has soft olive skin, and he has long fingers and toes just like his big brother and his Daddy. He is starting to roll over onto his belly and can roll himself back over as well. He is starting to laugh and coos a lot...I think we might have another talker in the family (bless my poor husband's ears). He already loves his big brother and sister and smiles at them whenever they are within sight. I have to work for the smiles, they don't! He is already sleeping through the night, what a gift to this tired mama!

What if we had listened to the voices in our head that pointed out all the "what-ifs" of having another child...what if this child also had Down Syndrome? what if this child had heart defects? And the list our minds created could go on and on...

But...what if we had been so afraid of another surprise diagnosis of some kind that we ignored what we believe is a God-given desire for more children? What if we didn't have our third child? What if we wouldn't have been willing to accept whatever child God wanted to entrust to us?

Oh, how we would certainly be missing out on such a beautiful miracle...

Love,

Coach Handbag Giveaway!

2011-06-09T14:41:00.000-04:00

My husband and I didn't know we were going to have a child with Down Syndrome and if you had asked us in advance of having Emily, this is not the path we would have chosen for ourselves. Though we now view Down Syndrome in a whole new way, those that choose Down Syndrome by adoption continue to amaze me. I have watched in awe as some of my fellow blogging buddies have adopted children with Down Syndrome, children they fell in love with through Reese's Rainbow before even meeting them. Right now the Cannon's are about to meet their beautiful girl Dariya and Kareen is getting closer to being home with her forever family as well.

I have watched the blogging community rally around these families and others to help give children that were in danger of being sent to an institution a real home. So, I am asking all of you to help another family trying to do the same thing. My friend Teresa over at Adding an Angel is hosting a giveaway for a Coach Handbag, you can gain an entry by donating to her adoption fund here. Let's help this family bring home their little girl Milana!

She's a cutie, isn't she?

Love,

Advice Needed...

2011-06-06T15:00:00.003-04:00

Miraculously, all three rugrats are sleeping at once...there are so many things I could... and should get done...

Right now I should be folding the ever growing mound of clothes that has littered my bedroom for 2 days now...the little tiny socks are screaming to be matched and put safely into their rectangular drawers where they belong.

Right now I should be writing thank you cards to those that so generously gave some pretty awesome birthday gifts to my spunky little, now 2, baby girl.

Right now I should be tidying up the 500 square feet where we spend most of our time. The carpet at this point is barely visible through the thin layer of plastic army men, half-colored pieces of paper, and crumbs that hitchhiked a ride on some toddlers clothing.

But, alas, here I sit writing this blog post. This is where I am drawn during my free time. I enjoy writing in this way, sharing my heart with anyone that is willing to stick around long enough to read. I have found this process to be rather cathartic. I have found this place to be a safe place to explore my own thoughts and feelings. I have found connections with amazing people I never would have met without it. And, because I value this place so much, I want to improve it, make it new, make it a place people visit and want to stay.

So, here's where I need your help. If you have a moment, share with me your thoughts, any thoughts you have about my blog. What do you like, or not like (be honest, no one improves if we don't receive a little healthy critisism). Do you like music when you visit a blog or does it make your ears scream for mercy? If you have sponsors or have chosen to advertise to be compensated for the time you spend blogging, what do you think about it? Do you like pictures, lots of them or just one good one here and there? What brings you to a blog and what makes you stay?

There are some obvious things I am definately going to change, like my header (essentially what I think of as the "welcome mat" to any blog). I may change the name because adding the littlest one to our family has made it feel obsolete. I also want to add tabs to direct people to specific information I think they might be interested in. But, I want to know what you think...so let me have it...your thoughts, your critisisms, I'll take it all and use it! Thank you in advance to all of you who are willing to share some advice with this bloggin' mama who should be completing a multitude of other daily chores!

Love,

We are done...and we are different

2011-06-03T21:50:00.001-04:00

Today marks the beginning of the end of our battle against cancer with the removal of Emily's port. So, we move forward to a new phase again, one that I am sure will bring about a familiar anxiety about what the blood results will show each month, one that promises to continually remind us of how little control we actually have over what happens in our lives or in the lives of our children. How very thankful I am to have reached this point cannot be expressed in words. This overwhelming feeling of relief is virtually indescribable so there is no point in even trying because I would only be disappointed in the words I chose later on, and realize they don't quite do the feeling the justice it deserves, so we'll leave it at that.

As I looked into Emily's eyes today, I realized, she is different than she was before this journey began, some differences are good, some are bad...some indifferent. She seems more mature, bigger in a "I beat the big C" kind of way. Obviously she now has no hair which has caused her breathtakingly beautiful eyes to jump out even more begging you to stare at them indefinately. But, she is now afraid of things she wasn't before like being laid on her back for diaper changes wondering if this will be the time someone pierces her skin with a needle as it has been for so many months. And yet, she is still every bit the mischievious 2 year old that she should be.

He (Ethan) is different too...some things good, some bad, some indifferent as well. My firstborn who thrives on routine has grown to be pretty flexible and has learned to adapt to an ever changing routine that begs the question "Who is sleeping at home with me tonight?" But, he has now seen a look of fear on his Mommy and Daddy's face I am sure he had never seen before...and we can't change that. If Emily was having a bad day at the hospital, he was the one who could make her giggle and smile like no one else...it was like the needles, the chemo, the bad hospital food all faded away when Ethan entered the room.

We (Jason and I) are different...again...some good, some bad, some indifferent. I thought it wasn't possible, but we have grown even closer and I learned so much about the man I love and our relationship's ability to withstand immeasureable stressors. We learned more about our loving Father and the power of His followers that moved in big ways to make this journey as good as it could be. But, we lost many nights away from each other that we can never get back, we can only make the most of each new day that we are given.

Cancer has changed us, we are different...not bad different, not good different...but all together different. We have been molded and shaped into a different family, each individual made new in some way because of this experience and collectively I am sure God will use all of it in the future to bring glory to His name. But, it's alright if we never know why we had to travel this path, all we need to know is that we reached our destination and there were beautiful moments along the way. Our many dinners served lukewarm, on makeshift plates, under hospital lights with the IV pole beeping in the background will never be forgotten...we made do, we had fun, we made memories.

I realize that many that are diagnosed with cancer never do conquer this beast no matter how valliantly they have fought and I will not forget that. I will never stop being grateful that Emily made it through this treatment and I will be praying fervently that she will be declared cured 5 years from now...and eventually for an end to cancer itself.

Love,

What We've Been Up to...

2011-05-31T22:37:00.000-04:00

Wow, have I missed this place...the white space here has been begging me to fill it with black letters for the last week, but I guess we have been so busy that I haven't had a free moment until now. Emily has kept us on our toes as usual. The fever we had been waiting for happened to occur on her birthday...so we spent that evening blowing out candles and eating birthday cake in the ER (shhh, I'm pretty sure the hospital staff would have considered that a fire hazard!). She returned home 4 days later and finally was able to open her gifts! Today we finished up the final to do list for her port removal which included a pre-op appointment and x-ray to rule out atlantoaxial instability (more common in children with Downs...but then what medical anomoly isn't more common with DS). If the x-ray is "normal" Emily will have her port removed and a final biopsy this Friday! Please pray that all goes smoothly.

I hope you enjoy our most recents pics!

Emily and her cousin Addi...there's a special bond between these two that I hope will continue to grow as they both get older. I have often daydreamed of Addi picking Emily up for a girl's day of movies and shopping together! Wherever Emily is...Addi can be found nearby!

Our little guy just chillin' on the couch...probably waiting for his Mommy to get around

to feeding him!

Ethan "helping" Emily open her birthday gifts...I guess this is what happens when you are the little sister!

It's only fitting that our princess received her very own castle slide for her birthday...I am so proud of her, she can now climb on top and go down the slide by herself!

Happy 2nd Birthday to my baby girl!

Bubble blowing...don't let the picture fool you though, she spent a good majority of the time trying to lick the bubbles off the stick...but hey, it's a work in progress!

I love these two!

My twin sister and her family came in town for a visit this past weekend...her boys Nathan and Ryan, aren't they just too cute for words! There's an indescribable peace I feel when my twin and I are together, I completely enjoyed the visit and the mess left in the wake of our get together proves just how much fun we had!

Apparently I am more sleep deprived than I thought...I can't even match my shoes! Yes, I wore them all day without noticing...but on a positive note, atleast my toenails are painted!

With each passing day I get to know this little guy even more and just when I thought my heart couldn't possibly be capable of loving a child as much as I love Ethan and Emily, this little one proves me wrong! I love how God increases our capacity to love just when we need it!

Ethan and his Pawpaw!

My sweet girl...

My big boy and my little boy...

I hope you enjoyed the pictures!

Love,

Emily Walks!

2011-05-23T14:06:00.000-04:00

We have been waiting for this day for a long time...and it finally came. Over the last couple of weeks Emily has been more interested in taking steps on her own...with a little "encouragement" of course (yes, that is an M&M she is walking for...my grandmother would be so proud, she used to bribe us all the time with M&M's and the tradition lives on!). I know it will probably take a while before walking becomes her main means of getting around, but I am just so glad to see her moving in that direction.

Love,

Emily Turns 2!

2011-05-18T08:00:00.003-04:00

Dear Emily,
It's hard to believe we are already celebrating your second birthday. You have been through a lot this past year, but have worn the sweetest smile on your face through the good days and the bad. You have continued to inspire me with your courage to face all that is placed before you. The way you navigate this journey called life with such determination has left me in awe of you. We are blessed to have spent another year loving you and are so thankful to our God for the blessing of you!

You started the year with cancer...

And ended it in remission, Praise God...

You started this year as the little sister of a brother that is so smitten with you he asked if he could marry you one day!

And ended it by becoming the big sister of a brother that will adore you just the same

You started this year Daddy's girl

And that hasn't changed...and never will

You started this year immobile and now you are taking your first steps...

Today as you blow out the candles, eat your weight in icing, and thank everyone for your gifts...Mommy will be thanking God for the gift of you!

Happy 2nd Birthday Sweet Girl - We Love You!

PS...Emily took 8 steps all by herself the other day...video coming soon!

The Most Amazing Story...

2011-05-08T22:02:00.000-04:00

We received some news last week that astounded both my husband and I and left us both walking around the house aimlessly uttering "I just can't believe it" and "how great is this"...shaking our heads in a sort of disbelief...

There have been many times in our marriage where God has intervened directly in our lives in very obvious ways as if to say "I am God, I am Omnipresent, I am the Alpha, the Omega, I am bigger than your feable, human mind could possibly conceive"...like when my husband was in grad school and someone just gave us a car, right when ours broke down. Well, it has happened again in a BIG way...here's the story...

Back in May of last year we were just beginning the process of finding out if Emily had leukemia or not. Her case was not clearcut as her bloodwork was off for a while, but no leukemia cells were found in her biopsy. It was right about this time that my mother-in-law, Cindee (who lives 8 hours away), was part of a massive layoff by her large employer. She knew we might possibly be headed down this road and figured she would wait just a little while before taking another job incase she could be of some help to us if Emily did have leukemia. Well, as soon as we got the diagnosis, she was on her way here to help us and has continued to make the drive back and forth for each of Emily's planned chemotherapy stays in the hospital as well as when Emily ran a fever and had to go back into the hospital. Right about now you are thinking...Wow, how great that she was available when we needed her and how AWESOME is our God that He put her in such a position to help us in our time of need. Now...here's where it gets REALLY GOOD...

Here we are at the end of our 8 month battle with leukemia and my mother-in-law called us last week to tell us that she received a letter from her previous employer asking her to come back...in May...right after Emily finishes her treatment...Coincidence...Hardly! It brings me beyond tears that God provided for her because she did exactly what He would have her do in this situation...Many times my husband and I tried to convince her to go back to work because we didn't want his parents to go without financially and they kept telling us they were doing what they needed to do...and how right they were! They provided for us and He in turn provided for them...how dare us doubt His provision in our lives when it is so very evident, we just weren't looking hard enough...so he had to slap us in the face with it in a BIG BAD WAY!

There are no words to explain my gratitude to all that have helped us on this journey and we are so thankful for the sacrifices our family has made as well as our friends to help us out, there is no way we could have handled all of this on our own. All of you have been Jesus's hands and feet...thank you for being so willing to be used by Him, we are more than blessed, and more than grateful to all of you!

Update: Emily just finished her final round of chemo...pictures coming soon!

Love,

Starting Final Round of Chemo!

2011-04-28T14:22:00.000-04:00

Wow! I can't believe this day is finally here. When we started this battle against leukemia 8 months ago, I felt like we would never reach the finish line...and now it is finally within reach. We have had a long break this time from the hospital because Emily's blood counts took a while to recover and I felt like we have had a taste of what it will be like to be hospital free, and I can't wait!

A part of me is sad for Emily that she is back in the hospital because the first 3 days of this round are the same as round 5 and she was pretty miserable. She has been away from the hospital for so long now that I worry it will be hard for her to adjust. But, I am sure the nurses will spoil her rotten like they always do and her Mawmaw is coming to help out so that should brighten her days as well. I also have a little bit of anxiety over her coming home and her counts plummeting and the inevitable fever. I am sure I will be in her room many times throughout the night checking her temperature. Please pray that all goes well for Emily this round and that we stay in remission once she is finished with her treatment. The Dr.'s won't officially call her cured until she has been in remission for 5 years, but every day that we can go without the cancer coming back is a good sign.

This journey has definately had it's share of ups and downs, but has not been as overwhelming as I thought it would be thanks to the prayers and help given to us by our family and friends...thank you to all of you for your support, I don't know how we would have gotten through this without each and every one of you.

More pics from Emily's time at home...

Ethan has to be near Emily all the time, during dinner he slides his chair up next to hers so they are touching and sometimes he even holds her hand...how sweet is that!

My little rugrats!

Nothing like a Daddy that loves his little girl to pieces and a little girl that is sure he hung the moon!

Standing by herself like a big girl and trying to get Mommy's camera!

So proud of herself for sitting in a big girl chair and eating a snack with her big brother

Love,

Easter 2011

2011-04-26T14:00:00.000-04:00

Easter Pics...Enjoy

A big thank you goes out to our blogging buddies Pudge and Zippy and their awesome mama Courtney...how cute is this bonnet they sent?

Jackpot...there's candy in these things!!!

Ethan "helping" Emily with her Easter basket...pretty sure he sneaked a candy or two from her basket :-)

Happy Easter!

2011-04-23T23:08:00.000-04:00

"Death could not hold Him...

the grave could not keep Him...

From rising again"

(Glorious Day by Casting Crowns)

It is because of Jesus Christ and His love for me that I have been blessed beyond human calculation!

Happy Easter from our family to yours!

Emily's Prayer

2011-04-15T21:49:00.000-04:00

We usually say a blessing at the start of our meals, Ethan says the prayer most of the time but since he was not home for dinner the other night, Jason jokingly asked Emily if she would bless the food for us and this was her response...

Apparently this is what we sound like when we pray :-)

Update: Emily's ANC was not high enough yet to start her final round of chemo on Friday, so we will start on April 25th.

Love,

Emily's "Can-Do" List...

2011-04-08T21:16:00.000-04:00

More and more I've become so impressed with the progress Emily has made over the past year, sometimes it's slow and other times it feels like we have hit the milestone jackpot overnight...but either way, her "can-do's" need to be celebrated!

Verbal communication is by far Emily's strength, although I remember reading in a book shortly after Emily was born that this tends to be the weakest area for children with DS...I guess you can only learn so much from a book! Here's a list of the words she speaks and signs...

Spoken words:
Hi, Bye-Bye, Up, Down, My Cup (sounds like ma-jup...very cute!), Wow, Alright! (when she is excited about something), Ow, Amen, Play, Dada, Mama, baby, Pawpaw, all done, thank you, no, eat, uh-oh, eye, hat

Signed words:
Book, baby, sleep, Pawpaw, baby, more, all done, Touchdown (she had to learn this one before football season, right?), please, no (much to my dismay), eat, bath

We do a lot of singing in our house and Emily seems to respond to it very well, she has even started to sing a few of the words to some of her favorite songs and knows some of the hand motions for songs like the "Itsy Bitsey Spider". We are currently working with a local university that has a music therapy program to "hire" one of the students to work with Emily on a one-on-one basis...I think that would be a win-win, we get a cheaper rate and the student gets a real-life look at what their job will entail once they graduate.

Emily's gross motor skills are definately the weakest area of hers, it hasn't helped that we have spent much of the last 7 months in a hospital room. She has been able to climb stairs for a few months now and we are now making progress with going down the stairs. Emily will push a walker type toy when she is highly motivated...taking her outdoors for a walk seems to do the trick. For about a month now she has been able to get herself into standing in the middle of a room and she is just starting to cruise the furniture. She can now get off the couch by herself, but cannot get on...she has a slight height disadvantage :-) She bear crawls some of the time and has tried to take one step by herself, but fell to the floor, I am pretty sure it scared her because she hasn't tried it since. We were hoping she would take her first steps by her second birthday which is about a month away, but with a couple hospital stays in the next month, I am not sure it will happen. But, she is SOOOO close and I am super excited for that day to come...first Emily has to decide she wants to do it!

Other can do's...
Putting large puzzle pieces where they go
Getting more successful with a spoon and fork
Successfully uses the toilet as her own "water-park" (not liking this one!)
Stacks blocks
Talks on anything that remotely resembles a phone
Getting better with crayons as an art tool rather than a chew toy
Pushes a car on the floor and has started to make an engine noise
Tries to cover up baby brother with a blanket...so cute, but I definately have to keep my eye on this one
Making progress with drinking from an open cup
Uses her cup holder in the car to take a drink when she wants and puts the drink back (most therapists probably wouldn't count this as a skill but the realistic mama that I am rejoices when she does anything that moves her in the direction of independance)
Understands how to play "chase" with big brother Ethan and often she is the initiator of this game...today she tried to play it with Chase, bless her heart...it will be a while!
She helps us put her clothes on and is a pro at taking off her socks (especially when we are about to go somewhere and I want them on!)
She will point to a few body parts when asked where they are (eye, belly, head, mouth, feet)
Emily can unload my tupperware cabinet in less than 10 seconds...and it takes me 20 minutes to put everything back the way it was!

Words cannot express how thankful I am that she continues to make such great progress especially since we were told that chemo can sometimes slow things down. Each day opens up the door for more progress and the possibility that she will say a new word or take her first steps, or accomplish some other task we have been working on. It's amazing to me, since having Chase a few weeks ago, how much he already can do with little to no effort on my part...or his...but that's a whole new post in itself :-)

Love,

What we've been up to...

2011-04-05T20:08:00.000-04:00

I know...I know...it's been a while my blogging friends! Finally I have a moment to write a short update on our now family of 5! I love writing here, and I have missed it terribly over the last week but have been so busy taking care of Chase and the other two kiddos that I just haven't had a spare moment. I had forgotten just how many times a day a newborn needs to eat...and of course how many times they poop! I have so many things I am pondering in my mind that I want to type freely into this big white space, and I am hoping once things settle down the ideas won't be totally lost in my mommy brain that is currently just a big pile of mush due to lack of sleep...Chase has decided that he likes to be up from 10pm to 1am so that he can have me all to himself apparently!

Emily came home from the hospital about a week ago and her ANC is still too low to start round 6 of chemo so we are enjoying our time together before the craziness begins again! Part of me just wants to get the last round over with, but then I am also so thankful for this time for Emily to get used to having a new little brother around before she goes back into the hospital.

I know this is not much of a post or update, but hopefully I will be writing more often soon! Here are some recent pics...

Baby Chase enjoying his first real bath...just like the other two, he LOVES having his hair washed!

These two love their new baby brother, the poor baby hardly ever gets a moment alone...he's the thirdborn, I guess he'll have to get used to it :-)

No need for words...the picture says it all!

My big boy ready to play in his first soccer game of the season!

I'll write again soon...I promise!

Love,

Bald & Beautiful!

2011-03-25T19:26:00.002-04:00

As I have said before...baldness is evidence of the cure NOT the cancer...and so it is indeed beautiful!

(Pictures are from a cell phone camera)

My sweet girl's hair is gone...completely! As you can see from my last post, as of a week ago Emily still had quite a bit of hair, but once she started losing it, it did not stop. We had a volunteer at the hospital shave the rest because she kept pulling it out and one of the nurses said it can cause an itchy sensation when it falls out. We are looking forward to all the cute hats she is going to wear...at least I hope she will keep them on long enough for me to get a picture!

Emily ran a fever on Tuesday night so she has been in the hospital this week, we are hoping to have her home by the end of the weekend...then we only have one more round left!

Love,

How did I miss it?

2011-03-23T22:53:00.001-04:00

How did I miss it? Somehow I missed one of the most significant days for a parent of a child with Down Syndrome, a day that is about creating awareness, a day I didn't even know existed until Emily was born...

Monday, 3-21, was World Down Syndrome Day...and I missed it...not just by a day, but two whole days went by and I was oblivious!

One might wonder how it wasn't at the forefront of my mind, but after thinking about it and being shocked that I totally forgot, I realized that me not remembering proves that having a child with Down Syndrome is not all consuming as people might think. Down Syndrome is a part of our life and our family...but definately doesn't consume us on a daily basis and forgetting to post proves that point.

I guess I was so busy doing "normal" everyday things that Down Syndrome didn't cross my mind. Between feeding, burping, changing the baby, and watching Ethan and Emily "perform" their brotherly and sisterly duties...poking at eyes and pulling on arms and legs included, I guess Down Syndrome was trumped by the everyday life of a mother enjoying her children for the very lovely souls they are!

Love,

Welcome Baby #3

2011-03-16T21:50:00.000-04:00

Introducing...

Chase Christopher

8lbs, 20.5 inches born today at 3:47pm

Love,

Tomorrow we meet baby #3

2011-03-15T21:56:00.000-04:00

Tomorrow is the big day...we get to meet baby #3! I have to admit knowing exactly when you will deliver is such a strange feeling. I was a little over 38 weeks preggo with Ethan when my water broke so that was quite a surprise. And with Emily, well, she just decided to make a speedy, grand entrance in the form of an accidental home birth...you can read her birth story here if you are interested! Given my "history of precipitous labor" as the Dr. would put it (I have so many other less scientific words I could use to describe my experience), it was decided a while ago that as soon as there was any progress toward labor, I would be induced. God couldn't have worked out the details any better for us; Emily just came home from receiving chemo so her counts are not low enough to be real concerned about fever, and she received a blood transfusion before she left the hospital since she was on the border of needing it, so we won't have to worry about that either.

I'll post the news and pictures of baby #3 here as soon as possible. I will tell you though, his name does not start with the letter "E"...much to the disappointment of so many. We tried to stick with the the "E's" but it didn't quite work out...from the memories of booger picking and eating former classmates or just a total dislike of certain names, we decided to go with a name that we really liked instead of trying to fit another "E" in there when we just didn't feel right about any of them. I guess I will have to find some way of including his name in my blog title!

If you have a moment, please pray for an uneventful few days with Emily's health while we welcome the new baby and for baby and momma's health during and after delivery...we appreciate everyone's continued prayers for our family, knowing so many are praying for us is what has made the last 6 months so much easier to handle.

Love,

Moving Forward...

2011-03-07T19:53:00.000-05:00

Today we started our morning bright and early. Emily had to be at the hospital at 6am for surgery to place her new port. Finally, we are moving forward with her treatment and that means we are now moving closer to the finish line once again. Today we started round 5 of 6 of her chemotherapy treatments! She was not happy with any of us though because she is quite sore from the placement of her port...but the nurse gave her some morphine and magically we were all back in her good graces! I have to say the last few weeks have been long and frusterating with the removal of her line and continued positive blood cultures...but we have all made it over this hurdle and are hoping this round goes well and we don't have any complications. I am more than thankful to God for answering our prayers and protecting Emily's body. We believe it is by the grace and mercy of God that her counts were on their way up when the big bad bacteria came on board!

Things are about to get a little bit crazy around here with baby #3 due to arrive in the next couple of weeks! We are so excited to meet him and we are all anxious to see how Emily takes to a new baby in the house...because she really LOVES being the baby! Ethan is a pro at being a big brother after his experience with Emily and he says he is going to "help", but he is quite adamant about not getting near any stinky diapers! From the outside looking in, I often wonder if it seems to others that our life is a little too hectic, but from where I am it just doesn't seem all that crazy...it's just life and it's become somewhat "normal" and there has been no shortage of fun or laughter in our home throughout everything!

As promised here are some recent pics...

A little competitive "Hungry Hippo's" playing!

"I had to blow my nose, Mommy...I promise!"

Oh, I just love my Daddy!"

"He's so funny...I love this guy!"

Destruction, HUGE trucks, mud, and greasy food...the perfect boys day at the Monster Truck Show!

"Who says 'diamonds are a girl's best friend', right now CHOCOLATE gets my vote!"

Love,

I will miss you Maw!

2011-03-02T21:26:00.003-05:00

If I had to come up with a phrase that describes the way my grandmother lived her life it would be "When life gives you lemons, make lemonade"...and I would add to that...and if you do make lemonade, it might as well be the best damn lemonade you ever tasted! My grandmother was dealt more than her fair share of adversity in her life; being left a widow at a young age, watching her firstborn son lose his battle with Hodgekins' disease, losing her hand in a car accident, and most recently being a victim of Hurricane Katrina.   Yet, she made a wonderful life for herself, refusing to succumb to a life filled with grief and sorrow.

I was blessed to have known my grandmother better than most people do. She was a kindergarten teacher and had off during the summers and would come to stay with my sisters and I so we didn't have to go to daycare. She kept us busy with card games like "Old Maid" and "Go Fish" where we would "bet" with M&M's...I give all the credit to her for my addiction to them and will probably have to break open a bag of them tonight! As time went on our relationship grew in maturity and I could talk to her for hours about anything and she always had some pearl of wisdom for me and I tucked these into a safe place in my heart drawing upon them when I needed them. When Hurricane Katrina destroyed her small town in Mississippi, she moved in with my Dad and lived so close I was able to take her to Dr.'s appointments and on short outings that always ended in a trip to her favorite restaurant "TGIF". I couldn't have been happier that she lived so close especially when Ethan was born...and yes, she did give him his first M&M!   He was blessed by the same little songs and nursery rhymes that I grew up hearing her sing, and I loved it!

I would not be doing justice to her memory if I didn't mention she also taught Kindergarten for over forty years...at the same school. Hundreds of children have been blessed to experience her beautiful soul! She loved those children as if they were her own. As she got older, the principal would ask her if she wanted older, maybe easier students and she would tell her that if she couldn't teach kindergarten, then she didn't want to teach at all until finally in her late 60's she retired. She was amazing, I can barely keep track of my one 4 almost 5 year old much less twenty something of them and I am not anywhere near 60 years old! She had taught at the same school for so long that eventually she would end up teaching 3 generations in one family and she also told me of two children she taught that eventually got married and she was teaching their children! And when the car accident took her hand, she pushed forward and learned to write with her left hand so that she could continue to teach.

She did have her funny little quirks that I will reflect upon often and smile: Her favorite word ever was S-H-I-T and she would utter it for no reason whatsoever and then apologize profusely afterwards,  she owned enough pair of scissors to supply every kindergarten class in Mississippi,  she insisted on fresh tomatoes and onions on a McDonalds hamburger, she always did a little happy dance whenever she would greet us at the door and had smiley face stickers available at the end of every visit, and of course I will miss her traditional birthday song she would sing on my answering machine every year that went "Happy Birthday to you, did you S-H-I-T in your shoe?" and then she would tell me later that she hoped no one but me heard her sing it because she would be so embarrassed!

Over the last year she had been losing little bits of her life due to dementia, and she had changed. But, what I will always remember is the Maw that was such a fixture in my life ever since I was very small, she was a constant when everything else seemed to change too fast. I will miss her dearly but rest in the knowledge that one day we will be reunited in Heaven. Ethan could tell I was sad today and he comforted me by reminding me of this fact and made sure that he mentioned that "God was going to fix her hand in Heaven!" If she is looking down on us now, I am pretty sure that made her giggle! If you think about it, please pray for my Dad who has lost the only parent he has had for most of his life, he took good care of her these last few years even when things were tough.

Ethan & Maw

Love,

It's been a long week...

2011-02-24T21:02:00.001-05:00

Emily had her central line removed as that was believed to be the source of infection and it was expected that when they drew her blood, it would be free of bacteria and she would soon have her port placed and be able to start round 5 of chemo. Things didn't go quite as planned, the bacteria kept showing up in Emily's blood so they proceeded with an echo of her heart, xray of her chest, and ultrasound of her stomach and all came back clear...thank goodness! After 2 days of negative cultures for bacteria, she had a picc line placed for antibiotics and we came home on Tuesday evening. Home health came and we learned how to give her antibiotics and all seemed to be going well...

But, at 2am when Jason and I tried to give her another round of antibiotics, her picc line wasn't working! So we called her Dr. and Jason brought her back to the clinic on Wednesday morning and sure enough, the picc line was no longer working properly and had to be removed. Additionally, one of her blood samples came back positive for the bacteria yet again. So after some research on her Dr's part, she was switched to an oral antibiotic that was supposed to work better. But, after we gave her the third dose this evening, she had developed a rash from the antibiotic...so we had to call the Dr. who advised us not to continue the antibiotic.

Please pray that the Dr.'s can figure out a solution to this problem that will cure Emily of this bacterial infection. She cannot continue with chemo until it is completely gone. Since the recent positive culture, she now cannot have a picc line or port of any kind because this particular bacteria is "sticky". So, I don't know where we go from here. We should hear something from the Dr. in the morning.

The positive side to all of this is that Emily is enjoying being a FREE woman...no lines attached to her belly or arm, plenty of opportunity to splash in the bathtub and not having to sit still while we flush her lines. So...she is one happy little girl! I promise to post pictures soon, I know my last few posts have been devoid of cute smiles!

Love,

Emily Update...

2011-02-16T21:35:00.000-05:00

First, thank you to everyone that has been praying for Emily, we sincerely appreciate it! Last night was pretty eventful. Emily's blood pressure dropped and she was having a hard time maintaining her oxygen level, so for a while there we thought for sure we were headed to ICU, fortunately they were able to get her blood pressure stable and so the nurses were comfortable keeping her on the cancer floor. Because of how poorly her body was doing last night, the Dr is quite confident the source of Emily's infection is her central line and so it must be removed in order to get rid of all of the bacteria for good.

Tomorrow morning she will have a small surgery to remove the line and she will have an IV so that she can continue to receive antibiotics. Once they feel her blood is clear they will replace her line and we can start round 5 of chemo. We were so blessed that while all of this was going on her blood counts were rising and her ability to fight infection has been getting stronger every day, otherwise the Dr said things might have been worse. Praise God that her ANC (white cells) were rising while all of this was going on which was helping her body continue to fight the infection.

Jason and I were able to get a small glimpse of what parents whose child has AML without Down Syndrome go through as their chemo is much stronger. Supposedly serious infections like the one Emily has happen with each round in typical kiddos, I can't even imagine what that must be like! Please pray that tomorrow goes well and they are able to remove the line without any complications and for Jason and I, that we can somehow manage to keep Emily from ripping her IV out as it will be in for about 2-3 days while they get rid of the bacteria in her blood.

Love,

Infection - Pretty Scary Stuff...

2011-02-15T10:07:00.000-05:00

Yesterday might have been the scariest day of my life as a Mommy...

The day started out pretty typical for us. Emily and I dropped Ethan off at preschool, then ran some errands and hurried home to meet our home health nurse that comes to take her blood on Mondays and Thursdays. Emily ate wonderfully for lunch and seemed to be feeling great, she woke up a tad bit fussy from her nap, but didn't feel warm at all so I didn't suspect she had fever. We left to go pick Ethan up from preschool, and it was all downhill from there.

When I picked Ethan up from school, I looked back at Emily and she was a little bit fussy and her cheeks looked a litte bit red. Knowing she was probably hitting bottom where her white cells are concerned, I pulled over and checked her temperature, it was 101.2 ,so I called her Dr. and we headed strait for the hospital (protocol for kiddos undergoing chemotherapy as any fever is serious business). About 10 minutes into our 25 minute drive she started getting really upset and crying histerically, but still looked OK. I am guessing we were about 10 minutes from the hospital and I turned around and she was vomiting all over herself, her face was completely white and her hands and feet were blue! Needless to say I ran a few red lights after that (don't worry I checked to make sure no one was coming), we came to a screeching halt at valet and ran into the ER. She looked so bad, she was taken to a trauma room so that she could receive continuous care by a physician who was mainly monitoring her blood pressure and oxygen levels. They started fluid and an antibiotic and she started to look better after about 15 minutes.

Needless to say, I was one scared Momma. I can honestly say this is the first time I have been afraid for her life since we started treatment. Many people comment how great it is that we get to go home after her chemo finishes until she either runs a fever or comes in for her next treatment. I have always had mixed feelings on this one. While I am so glad we have those extra weeks at home, we are also constantly monitoring her for fever as her counts bottom out. The scary part is how fast she can become seriously ill when she has no immune system. By the time we had reached the ER, her fever was 103.5 so basically she went from no fever and feeling good to 103.5 and in the ER over a period of about 45 minutes. What a blessing it is that we live 25 minutes from one of the best children's hospitals!

So, blood cultures were taken and run for both of her lines and she does have a bacterial infection (gram positive rods for you scientific folks out there). Emily will continue to receive antibiotics for the next 10 days and hopefully her lines will come back clean after that...if not, I believe they will just go ahead and replace her central line. I have heard that normally they can get the lines clear of the bacteria though so I am not too concerned about it at this point.

I am so thankful that God has blessed us with a great children's hospital and family and friends who at a moment's notice have to come to our rescue. While I know this is all part of the world of leukemia and is to be expected, today more than ever I realize how precious life is...and how much less important money, the right house, the right job, etc...are to me. I am just glad I get to see my daughter's smiling face today!

Love,

Red...

2011-02-09T19:53:00.000-05:00

I am seeing a whole lot of this color lately with Valentines Day right around the corner...today we got an extra dose of it! Yesterday we went to the outpatient clinic as Emily's hemoglobin was really low, they pumped her up with some blood and we were on our way (7 hours later!). This morning when she woke up, she looked like a big red lollipop! I called the Dr. who asked a few questions and determined that she must be having a mild allergic reaction to something in the blood, so I gave her benedryl as insructed. I was also told to go to the ER immediately if her urine had blood in it...WHAT! If that doesn't make you a little worried, I don't know what would! So, this evening she is still a little bit red but in a great mood...must be some really GOOD blood...so good it is literally making her look like a big Valentine's Day treat!

These pictures were taken tonight after most of the redness was gone, so you can imagine what she looked like earlier!

Then, at dinner I looked across the table and Ethan's cheeks were bright red...yep, he had a fever. I think I've had all the red I can take for one day! Now I just have to figure out a way to keep these two away from each other since coincidently Emily's counts are at rock bottom so whatever he has, she will likely get and we were so hoping to avoid another hospital stay. I am hoping to wake up to two appropriately colored children tomorrow morning!

Love,

Forever Healed...

2011-02-03T14:54:00.000-05:00

Lois has gone home to be with Jesus and is now forever healed of cancer. Please pray for her sweet family...

Love,

"I'm sorry, your baby has Down Syndrome"...

2011-02-01T23:19:00.001-05:00

A woman, exhausted from enduring 15 hours of labor, ready to experience what is supposed to be one of the happiest days of her life...and just like that...the news is delivered. She's not sure how to react, but the pity, fear, and concern she can see in her physician's eyes is her first clue that this might be the worst thing that could ever happen to her. The physician asks if she has any questions, she is sure she does, but she can hardly udder a response as the shock is so overwhelming at this point. The physican leaves the room feeling somewhat relieved this encounter is over because he/she is not adequately prepared to answer any questions and has likely never even met someone with Down Syndrome.

This woman will find her way, she will find the answers to her questions, and she will love her child so fiercely she will wonder how someone could have ever used the words "I'm sorry" and "your baby" in the same sentence. She realizes Down Syndrome is not what she thought it was and every myth she believed before has been proven wrong time and time again right before her very eyes in the life of her child.

Many of you are aware, as the story has been featured in the news recently, there is a new test that offers the ability to diagnose Down Syndrome very early in a pregnancy and, unlike amniocentesis and other current tests to confirm this diagnosis, there is virtually no risk to the fetus. Many disagree with the test in general, I am not sure how I feel about the test itself, but I think the larger issue here is how the results are delivered.

Fast forward to the very near future...

A young woman excited about a new pregnancy will experience the following..."I'm sorry, the results of your blood test confirms that your baby has Down Syndrome, how would you like to proceed?" The pity, fear, and concern in the physician's eyes will give her the first clue she needs to answer this question...she will choose to terminate (as 92% of women who receive a prenatal diagnosis do), the medical conditions and all that accompany Down Syndrome are just too much for her to accept.

This woman will move on, she will go on to have future children. She will think often of the child that might have been and dismiss the thought as there was a perfectly legitimate reason for terminating. She will find comfort that she made the right choice because, after all it has been said that these children suffer greatly, they are incapable of feeling or loving in return, and it would be cruel to bring such a child into this world to be a burden to society. Then it will happen...

This same woman will have her first personal encounter with someone who has Down Syndrome. She will be surprised and intrigued at the conversation, however brief, they will share. She will note how independent this person is and how very "normal" he/she seems. She will see the love the family feels for this person and it will hit her..."what have I done?" and she will have to live with years of grief for making a decision without having all of the information.

It's not just about the life of the child to be saved...it's about the life of the mother who was unaware and wasn't provided the opportunity to make this life or death decision. You see...she needs to be saved too, saved from the guilt and depression that has been proven to follow having an abortion.

I cannot change the fact that this test will be available, but I can play a part in reducing the number of abortions that may result. Here's what I can do, as well as every other parent of a child with Down Syndrome. My plan is to talk to my OB about this new test. I want to know how they feel...are they prepared for the increase in the amount of women they will have to "counsel" on this decision? More importantly, I will ask them if I can help... Do they have a contact in place should a women encounter this predicament and if they don't, can I be that person? Do they know there are families who want to adopt children with Down Syndrome in the United States? Also, have they ever met anyone with Down Syndrome?...I will be glad to offer that opportunity to them in a heartbeat!

It doesn't matter how many women decide to have this test...what does matter is they receive the information they need to make a well informed choice should their unborn child be diagnosed with Down Syndrome. It seems appropriate the first change that needs take place has to do with the person who will deliver the information, the physician. Raising awareness and changing minds seems overwhelming, but all it takes is one mind to be changed to save two lives...a mother and her unborn child.

Love,

This and That...

2011-01-31T16:23:00.000-05:00

Emily loves playing "chase" with her big brother... as you can see from the smile on his face, he doesn't mind much either!

My new nephew Benjamin!

Our lastest purchase from a great consignment store that opened near our home...$20 for this heavy duty "Emily carrier", perfect for enjoying our nearby trails.

Emily enjoyed her little ride through the trails and waved and said "Hi" to everyone that passed by.

I Love this little boy!

And this little girl...

We are back home after completing round 4 of chemo and it's hard to believe Emily is more than halfway done with her treatment..2 more rounds to go, I can see the finish line now! Thank you to all of you who continue to follow our journey and for praying for our family, your support means so very much to us!

Love,

Starting Round 4

2011-01-25T20:47:00.000-05:00

Much to our surprise, we started round 4 of Emily's treatment yesterday! Emily has consistently been a few weeks behind for each treatment as we had to wait for her ANC to come up to 1000. On Thursday we came home from the hospital and found out we would be returning Monday to start chemo. We are on day two and she is doing well, she is drinking and eating great so far and we hope that continues!

Emily has had a pretty bad cold for the last week which is what likely caused her fever and landed us in the hospital last week. Apparently she loves to share because I woke up yesterday morning feeling every bit as bad a she looked when she was sick! Hopefully this week will fly by and if all goes well we will be home on Friday evening in our nice comfortable beds (sleeping on a hospital couch is not fun when you are 32 weeks preggo!)

Love,

Back to the Hospital...

2011-01-15T15:21:00.000-05:00

Yesterday Emily and I made a visit to the outpatient cancer clinic at the hospital to see the Dr. and possibly get blood and platelets. Her hemoglobin and platelets were OK, so we didn't have to get any transfusions. Her ANC was very low, 20 to be exact. This morning Emily felt warm so we took her temperature and she had fever...so my husband headed to the ER with her. She has been admitted and will likely stay until her counts rise. My husband told me she has been enjoying many visits from the nurses as they haven't seen her in a while and I am sure they are spoiling her rotten as usual!

I am so very thankful for the 2 weeks we were able to be at home so it's hard to be sad about being admitted because we were so fortunate to have that time together. The best part was that my husbands work was closed several days in a row due to snow, so we were able to make the most of her time at home!

More pics for your enjoyment!

Dancing with Daddy

Loving on Barney

Wow, this girl loves speghetti

Cuddling before bedtime

Baking to keep ourselves busy

Love,

Going, Going, and Soon To Be Gone...

2011-01-13T13:55:00.001-05:00

Over the last 2 months Emily has been losing hair little by little due to the chemo treatments and I have been reluctant to cut it fearing that it would look even worse. But, it has gotten increasingly thin and was starting to look very unruly...so last night, I whipped out the scissors and gave her a much needed haircut!

I thought I would be a little bit sad that her hair is falling out, but I am not. Emily's hair loss is not caused by cancer...it is caused by the miracle drugs that are curing my baby girl and so...let it all fall out, if that's what it takes! I am reminding myself often when I notice an undesirable side effect from chemo that it is a blessing that leukemia can be fought with these drugs even if a cure comes at a hefty price. As you can tell by the pictures Emily has some bruising and is pale so tomorrow we will spend the day at the clinic getting platelets and blood.

Love,

"Let it Snow, Let it Snow, Let it Snow!"

2011-01-10T21:27:00.002-05:00

Today was a great day! It started with my husband's work being closed due to inclement weather and got better from there! Ethan, Emily and I were so excited about this extension to our weekend. It wasn't too terribly cold outside so we improvised with our southern winter gear and headed outside...Enjoy these pics!

I love the way Emily looks at her Daddy, she just adores him...but then again we all do!

Layer, Layer, Layer...and if you live in the South and own very little cold weather gear...absolutely nothing matches as you can see!

Emily is not so sure about her "sled" crafted by her Daddy out of a tupperware container and string...and I don't blame her!

Nothing makes this girl smile bigger than her brother!

Who knew a shoe tray could double as a sled!

My beautiful girl

Emily kept hydrated by eating her fair share of snow...don't worry we told her to stay away from the "yellow snow"!

These two had so much fun sliding full speed down the hill in our backyard!

The snow served as the perfect distraction for today. My twin sister is pregnant with her third baby boy and being induced today and it will be the first of her children that I haven't seen within hours of their birth, so needless to say I was missing home today! If you think about it, please pray for a speedy labor for my sister and a healthy baby boy!

By the way, thank you to all of you who left comments on my last post with some great ideas for indoor fun...we may be using some of them tomorrow as the beautiful, powdery snow we enjoyed so much today will probably be slushy and muddy tomorrow!

Love,

What do you do when...

2011-01-09T21:37:00.000-05:00

the temperature outside is...well, so cold the mere thought of bringing the kids outside to play causes you to shiver? Lately we have been experiencing some seriously cold weather the likes of which has caused this southern girl to spend more time inside than I care admit. This wouldn't be a problem if I didn't have an extremely energetic 4 year old that needs activity desperately in order to maintain a normal level of chaos in our home.

If Emily weren't immunocompromised, a whole world of public indoor activities would be an option for us... but since pesky little bugs hang out on chubby little kid fingers that always seem to find their way to the mouth and maybe even the nose, we just can't take part in those fun activities until Emily is free and clear of leukemia. So...are there any suggestions out there? I am looking forward to hearing from you...and Ethan can't wait to hear what fun things you do with your kiddos when you are stuck inside!

Until then...we'll continue to occupy our days with mischief, getting into things we shouldn't..

And a little couch wrestling while watching entirely too much TV!

Love,

Christmas...in Pics

2011-01-04T22:20:00.000-05:00

Decorating our ginger bread house...Emily "helped" by test tasting the goodies!

Our family of 4 (soon to be 5!) Before church on Christmas Eve...Incase you are wondering, Emily's adorable dress was purchased for her from Lil' Sis Designs by one of her AWESOME Aunts!

Christmas morning...Ethan was so excited about his walking/talking buzz lightyear and said "I have wanted this my whole life!" which is almost true, he has been asking for it since he was 2 years old!

It's no surprise Emily's favorite gift was a Barney doll from MawMaw & PawPaw...she is completely smitten with the purple guy who gets more hugs than her momma does!

A white Christmas in the South... I still can't believe it!

Emily so excited about her new kitchen and fake food (she keeps trying to eat the french fries and then gets mad that they aren't real!)

I wish I had taken more pictures this Christmas, but honestly I was enjoying all of us being together so much that I didn't want to view it all through a tiny camera lens! Just when I think "nothing could top this Christmas", another one comes and goes that was better than the one before. Next Christmas should be even better...we'll be one child heavier and one leukemia diagnosis lighter...and I can't wait!

Emily Update: We are still home after completing round 3 of chemotherapy. We did spend all day at the outpatient clinic getting some much needed blood as Emily's hemoglobin plummeted over the last few days. We also had to have her central line repaired again because the little stinker somehow managed to damage the fix that was made a month ago! We are so thankful to be home and are praying against any fever or sickness that would put us back in the hospital.

Love,

A Prayer for Lois...

2011-01-03T08:00:00.001-05:00

Stephanie from Daily Smiles has designated today, January 3rd as an official day of prayer and fasting for Lois. Lois has leukemia and Down Syndrome...just like Emily. She endured 6 rounds of chemo, only to relapse a few weeks after she had finished...what a devastating blow. In my mind, I have been to this place and it's too painful to even describe...Lois and her family are living the reality and my heart just breaks for them all. Lois has gone through another round of chemo which didn't bring about remission...a second round will start this week. Lois needs to be in remission in order to be eligible for a bone marrow transplant. Please pray for Lois and if you haven't done this before...visit http://www.marrow.org/ and sign up to join the National Bone Marrow Registry.

Heavenly Father, Almighty God, Prince of Peace...I come to you praying for sweet Lois and her precious family. Please Father God heal her body as only you can, gift her Dr's with wisdom with how to treat her cancer, fill them with compassion as if she were their very own daughter. Father in Heaven, please take away any pain that Lois may be in from her treatments, banish any nausea that may threaten her appetite, and fill her tiny body with your love and comfort. Heavenly Father, I pray for an abundance of peace for her family, that you would give them strength to get through this treatment and to handle the uncertainty that lies ahead. I pray that you would comfort them as only you can. I pray that you would carry them during this time. God, please, place people in their lives that would come forth as your hands and feet to provide emotional support and to fulfill any other needs during this time. Father God, hear our prayers, Amen.

Praying for Lois today...Christmas pics coming soon as promised!

Love,

Beginning Round 3 of Chemo

2010-12-27T20:57:00.000-05:00

First, I have to say how grateful I am that we got to spend Christmas as a family, outside of the hospital! We have family in from out of town and it was so nice to relax and spend time together without having to work around someone being at the hospital with Emily.

Today we went to have Emily's blood taken to see if her ANC was high enough to start round 3, and it was! So, right now she is happily snoozing away in her hospital crib while the chemo continues it's fight against those cancer cells. I am glad round 3 has finally started...it means we are one round closer to the finish line! If all goes well we will be home on Friday evening.

Christmas pics coming soon!

Love,

Good News and Pics!

2010-12-21T19:20:00.000-05:00

On Monday we went into the hospital expecting to be admitted, but Emily's ANC was only 620, it needed to be 1000 to start the next round of chemo. Because her counts were recoving so slowly, they did a bone marrow biopsy to make sure there were no leukemia cells and that she was still in remission. Her Dr. was not that worried and had advised us that round 2 chemo was pretty strong stuff and it had been well documented that this round takes longer to recover from than the others...but as a momma it's been a little difficult to keep my worrying at bay!

The Dr. just called and we are still in REMISSION! I am so relieved...thank you to everyone that has been keeping Emily and our family in your prayers. So, we will all be home for Christmas and plan on starting round 3 on December 27th.

Another praise is that Ella Grace is home! I know many of you have been praying for her as well and I couldn't be happier for her family that she is at home and officially finished with her chemo treatments...what a wonderful way to start the year 2011! She will always have a special place in my heart and I hope I get to meet her whole family one day!

More pics of our time at home...

I'm not sure how they got themselves into this predicament...pretty sure I don't want to know, I'd say the 4 year old looks pretty guilty though!

Playing with a gift from this beautiful little bloggy friend Maggie Rae...Her momma always puts the best pictures on her blog, you should check it out! Thank You Thank You Patsy for thinking of our Emily!

Hugging one of the toys above!

Emily and her Daddy!

Love,

The Latest on Emily's Treatment

2010-12-17T09:40:00.000-05:00

This week we have been monitoring Emily's counts in anticipation of her beginning round 3. Yesterday we went in for an actual appointment and to proceed with a lumbar puncture to inject chemo into her spine. Everything went really well, although her counts were still too low to begin chemo, her ANC was only 560 and it has to be 1000. So, the plan right now is to go back on Monday to see if she has reached the magic number and begin round 3. However, here is where my anxiety kicks in and where I would like to request prayer on her behalf...

If Emily's numbers are not high enough for treatment to begin, the protocol she is on requires another bone marrow biopsy. She has had a number of biopsies so the procedure isn't what concerns me, the reason for the biopsy is what is causing a little bit of worry for me. If her numbers have not increased enough by Monday, the Dr's told us they have to do another biopsy to make sure she is still in remission. Her Dr. believes she still is and that her counts are on the rise, but there is a very small chance that it is taking longer than it should for a reason, that maybe the leukemia is back. So, Monday can't come fast enough for this Momma!

On the positive side, we are having so much fun having everyone at home together and we get to enjoy a fun filled weekend as a family instead of being in the hospital!

Emily wants everyone to know how much fun she is having at home...

Me and my Daddy...who knew he could double as a swing?

I love watching TV with my brother...he's just so cool!

With my Daddy at my brother's Christmas program for preschool...I can't wait for it to start!

My brother is a rockstar!

When I got home from the hospital I noticed this gate at the bottom of the stairs...Mommy gets so excited when I climb up, but not so excited when I try to slide down head first (she's a little bit of a worry wart...but don't tell her I said so).

BUSTED! A girl can't get away with anything around this place! I just wanted to decorate the carpet with these red and green leaves...and maybe taste just a few! I've been into the presents too...I don't think Mommy caught me though!

Love,

If Emily had been born in Eastern Europe...

2010-12-14T15:40:00.001-05:00

More often than not...this would have been her fate...

She would be unloved

Her life would have no value

Her health issues would go unaddressed

If she lived to 5 and wasn't adopted, she would be sent to live in a mental institution or insane asylum...forced to live in conditions we wouldn't let our worst criminals live in. When I see my little Emily's smile I cannot believe how such cruelty continues on in other countries. These children literally live in a neverending nightmare... and their only hope is people like you and me.

I admit it's taken me way too long to get my thoughts together on this post. You see, I am all over the place emotionally on this one, trying to examine where my heart is and where God wants me to be right now. Our current situation with Emily's health has caused me to feel emotionally drained. But because I cannot ignore the injustice I know to be true...I have to find a way to do something.

So, after much thought, this year I have a specific request...it may seem too simple at first, but in the long run, I hope will lead to years of continuous involvement with this ministry... so here's my request...

1) Get to know the Reece's Rainbow Ministry here
2) Read about the many ways you can help spare a child from a life of misery
3) Pray specifically about how God would use you and your family through this ministry...understanding full well that He may call you to do nothing here...or that He may call you to do more than you could have imagined.

Your involvement may be as simple as hitting a donate button and giving monetarily or it might be as involved as sponsoring a family that is in the process of adopting one of these sweeties or becoming a prayer warrior for a specific child...

OR...

God may be pulling at your heart to commit to adopt one of these children. Please don't ignore the tugging at your heart or the way you can't take your eyes off a specfic child as if they were already yours. You might say...I can't adopt a child with Down Syndrome...but I am hear to tell you that while you might think you are blessing that child...the blessing will be all yours, I promise you this. If God has chosen one of these children for you, He will give you everything you need and more to care for them.

If you have a moment, there is an inspiring interview on the blog "A Perfect Lily" with Lisa Peele, who has a daughter with Down Syndrome and recently adopted a beautiful little girl through Reece's Rainbow.

Christmas Angel Tree TwentyTen

CLICK HERE to Put the Angel Tree Bubble on Your Blog! Thank you!

Love,

A Big Thank You!

2010-12-12T13:41:00.000-05:00

Emily wanted me to send out a big thank you to her blogging buddy Anna and her family for her special gift! Emily was so excited to open her package and was even more thrilled with what was inside...

A Pillow Pet and PJ's!

Love,

She's Home!

2010-12-08T14:33:00.001-05:00

This is just a quick post to let everyone know my sweet baby girl is home! The Dr. had said we would be in for 3-4 weeks, and he was right, we were one day shy of the 4 week mark, Emily likes to take her time...and that goes for just about everything she does! We had practically moved into the hospital so it took 4 wagon loads to get all of our things, including a small Christmas tree, into the car!

While Emily did enjoy her stay at the hospital, she was thrilled to be home. At the dinner table she kept looking at everyone and just smiling and giggling, it was so darn cute! She is loving her newfound freedom to crawl around wherever she wants, and even to places she shouldn't. Last night we decorated our Christmas tree and ate way too many cookies, and we plan to try to cram more holiday fun in until we are supposed to be back for round 3 on December 16th! For this round, we will go into the hospital for about 5 days while they administer the chemo, then we go home until she either gets a fever or is ready for her next round. We may even have a chance at being home for Christmas!

Love,

A Post from Emily

2010-12-04T01:25:00.000-05:00

Hi Everyone,
It's me, Emily! First of all, thank you to everyone that has been praying for me. I wanted all of you to know that even though I am still in the hospital, I am doing great! I can tell my Mommy and Daddy really want me to come home, but to tell you the truth, I am liking this place a whole lot and I am not that upset that my body is taking a little while to make enough white cells to go home...here's why...

When I am here, lots of really fun people come visit me...and they even sleep over occasionally. At home I have to sleep in my room all by myself, here I have sleepovers every single night! Here's me with my Aunt who came to visit over Thanksgiving.

Sometimes Mommy runs out of fun things for me to do, so she lets me play with things I normally am not allowed to play with...like her glasses, I love to put them on and take them off!

My crib here is extra big so I have plenty of room to snooze! I don't have a pillow for my crib at home, but I think I might need to see if Santa can bring me one!

There's a great recliner in my room where I can relax with a cold apple juice and watch plenty of Barney...I don't get to see that big purple guy nearly as much at home!

I get to do plenty of activities like coloring with Santa's elves...The big guy was pretty nice even though his BIG head was a little bit scary at first!

I even wrote a letter to Santa...I hope he speaks scribble!

There seems to be an abundance of chocolate around this place and sometimes Mommy shares with me!

I love my nurses, they come to visit me in the middle of the night a lot. For the first couple of weeks I slept through the visits, now I feel it's my duty to welcome them to my room and play with them...even if it is 2:00am! I don't think my Mommy and Daddy like this a whole lot, but I can tell I am wearing them down and it's only a matter of time before one of them will ge me out of my crib to let me play in the middle of the night!

I get to have room service every single day for every meal! Now if I can just figure out how to order my own food, that would be fabulous...I'll take a bag of salty chips with a side of whatever your dessert special is please!

Would you want to go home?

It's in the Eyes...

2010-11-27T00:09:00.000-05:00

Since Emily's birth I have read countless birth stories told by other parents of a child with Down Syndrome...and it seems most of them recall that before anyone told them, they knew about that extra chromosome as soon as they looked at their child's eyes. The same can be said for my husband and I...we both noticed Emily's eyes immediately, even though neither of us said anything about them to each other. Over the past year I have thought about those moments after her birth...I didn't know Emily had Down Syndrome at the time, but I knew her eyes were telling me something profound.

At first Emily's eyes told me of a life that would be different, difficult, and possibly one that would be full of despair unimaginable at that point. Her eyes were evidence, a feature the Dr would use to tell us our beautiful baby girl had Down Syndrome. Though I am ashamed to say it now, Emily's eyes conjured up such feelings of fear and sadness I had never felt before that I didn't want to look at pictures of her where those beautiful baby blues were captured up close. The eyes were a reminder that my daughter was different and because of that..I was now different...and no longer "normal". There were days I would wake up and had almost forgotten about the down syndrome...only to see her eyes and feel my heart breaking and mourning the loss of the child I thought I wanted...the one with a "perfect" set of chromosomes...the one that never existed beyond my imagination.

After Emily was born I remember her staring deeply into my eyes, without interuption, as if to say "look at them, look at my eyes, they will tell you everything you need to know"...and they have. Those eyes have told me the truth about the life of my perfect little Emily. There just isn't any room for darkness in their sparkle! Every day that I get to wake up to those little peepers is a blessing I could never have imagined for myself, but God knew I needed.

Emily's eyes are my very favorite feature of hers...they are so captivating that if you look into them you will have no choice but to be swallowed up into her world, a world of such beauty I was incapable of seeing before. Though it may be a while before she can utter the words "I love you Mommy", the sparkle in her eyes when she sees me has told me of such love more times than I can count. Emily's eyes even tell me when I am about to score the most incredible smile I have ever seen, one that starts as a small glimmer of light and moves all the way through her body. Those big blue eyes tell me of a life that is different, but so full of purpose. Emily was right in her plea to me on the day she was born...if I look into her eyes I see a life bursting with promise and blessing. When I find myself lost in the world of early intervention, leukemia, dr. appointments, failed hearing tests, and many other distractions...I will look into those incredible eyes, bearing those signature brushfield spots, and they will tell me everything I really need to know.

(an older picture, but one that captures one of the most beautiful sites I will ever see in this lifetime)

Love,

So Thankful...that I want for nothing...

2010-11-25T22:05:00.000-05:00

Throughout this week as Thanksgiving Day was fast approaching I found myself feeling so happy and so very thankful. I am sure our current circumstance wouldn't typically bring about these feelings... but, I just can't help it. I realize that even though times are tough right now with Emily battling leukemia, God has provided EVERYTHING we need to get through it.

So very thankful that God has used the hands of His people to make countless meals for our family since Emily was diagnosed.

So very thankful that God has placed family and friends in our lives that are willing to sit at the hospital with Emily to give us much needed time at home with Ethan.

So very thankful that Emily's treatment is going so well with only a few minor bumps in the road.

So very thankful for my husband and our relationship that never wavers no matter what the circumstances are.

So very thankful for my sweet little boy and precious little girl...and for a healthy pregnancy so far.

So very thankful for everyone who is praying for our family.

But most of all I am so thankful that my God loves me though I continue to fall short day after day.

So, you see...I want for nothing!

HAPPY THANKSGIVING!

Some pics for your enjoyment...

Love,