Friday, April 8, 2011

Doing Down syndrome different

Many of you may know that we didn't know about Jaxson having Down syndrome, or a major heart defect until after he was born. He definitely was the most traumatic birth. My bed was half-way out of the room when he was born, because they could not get his heart rate up, and they were taking me for an emergency c-section.
As soon as they threw this tiny person on my chest, I knew he was different. It wasn't until he was bundled, and they handed him to me, that I could see the Down syndrome. I even said something out loud, and the nurses didn't say a word. He was wisked away because his breathing was labored. Ray and I both weren't bothered by the DS diagnosis. I'm not sure why we didn't have the feeling of loss, but we really didn't. Even his heart defect didn't scare me. I guess that's the benefit of working at the children's hospital as a CNA, in the process of getting my nursing degree.

Even when we brought him home I didn't worry to much about his health. His NICU stay was quite uneventful. Bili lights, oxygen and feeding tubes, very typical stuff. He struggled to take anything by mouth because breathing took all of his energy. But I knew as soon as his heart was repaired he would able to grow and develop.
I specifically remember his two week appointment with my ped. She asked me if I had any questions or concerns with Jaxson. I told her the only thing that bothered me was this was going to be my last baby, and not being able to breastfeed him was killing me! She said there was no reason at all that he couldn't breastfeed. So we started working with the lactate nurse, and he started nursing really well. He would only nurse for 5 minutes or so, because he tired so easily, but at least he was nursing, and we were getting that bonding time. The pump would give him all the breastmilk he needed through his tube!
Little did I know how quickly things would take a dramatic turn. Diagnosis would start piling up, and his health would go downhill instead of uphill. Our experience with Down syndrome has been much different than most.

Then a certain princess entered our lives, and I've seen a whole different side of Down syndrome!

One that makes me more and more angry with the word "retard". And makes me so angry with the stigma that Down syndrome still carries. This girl couldn't be more typical. As typical goes that is, I mean, every kid, extra chromosome or not, develops at a different rate.
As spring approaches, we are entering a whole new world of firsts for our princess. This girl has never wiggled her toes in the grass before. She's never been in a swimming pool, or to the zoo.

I still can't believe that she was thrown away, doomed to live in an institution, simply because of her diagnosis.
She is entering a whole new stage, the stage of toddlerhood, and I'm loving every minute of the naughtiness! After all, its been 8 years since we last had that in our home. Now that she has discovered the kitty food, I'm chasing her away from there constantly! Seriously, cat food can't taste good!
You should see the fits that this girl throws if you take a toy away, or move her away from something she was getting into. Its a far cry from the quiet child in the orphanage!

She also gave me my first toddler scare in a long time! She was in my room with me, and she started choking. I had just vacuumed my floor, so I couldn't figure out what she had in her mouth. She had just eaten, so I wondered if something she ate was stuck. She was breathing ok, but she kept gagging, and crying. Training kicked in and I did infant Heimlich on her. Nothing. As I was trying to decide how to proceed, 911, or emergency room, she finally coughed it up so I could pull it out of her mouth. It was a piece of that tape that they put on the sides of DVD's. I have no idea where she got that. She must have reached under my dresser or something.
Sheesh!
I have no doubt that she will go to a regular school, with typical peers. And she will soak up every minute of what they teach, because that's what she does.

Its been interesting to see both sides of Down syndrome. I'm grateful for both my babies, and wouldn't change a thing about either one! Jax is severely delayed because of his medical problems, not his Down syndrome. But I'm telling you that this boy will change your life! People hold him and they just cry. He does that to you, he's just too perfect! We need to continue to educate people that Down syndrome is more alike than different!!

21 comments:

Talley Images said...

Your kids are just so gorgeous!

Kristin said...

Well said! It looks like the little ones have avoided the crud? Knock on wood :)

kecia said...

love this post! they are both gorgeous...and you are so lucky to have them and to expereince so much because of them!

Anonymous said...

I know I have said it before, but I LOVE your family. Jax makes my heart melt...I would love to get my hands on him! Arina is the cutest girl in the world. I read your blog everyday to check up on little man and I hope your move to CA will be everything you hope it to be and I hope Jax does get to go to school! Love the way you love those kids!~

Stephanie Carmichael

Runningmama said...

One day I hope I get to hold your Jax and experience the tears he brings to people's eyes and I would so love to see Arina's huge smile in person! I love your perspective here, it's obvious how much love you have for these two cuties!

Zoey's mom said...

Look at Jax as a baby ... so precious.Still is of course.I am of course one of those that cries everytime I hold him ... although I didn't get my fix at the party ... too crazy.Anyway..

I,like you,didn't get the "typical Down syndrome" gig,as you know.Our road is so vastly different than most of her peers.No fight for inclusion and all that ... sometimes I am not sure if I am happy of sad about that.We,like you and Ray,didn't bat an eye at the DS diagnosis ... it has been all the rest that have thrown us for a loop!

Arina is just amazing.I swear,that picture,call me crazy ... looks like Ray!Really does.Something about it.

You are so blessed and that you see that,is the most wonderful thing of all!

Rochelle said...

They are SO more alike than different! Great post!

Melissa said...

Ds is definitely more alike! I'm glad you are enjoying your toddler stage again. We don't have a cat, but one of my plants is looking pretty bad because Claire is determined to removed every leaf. Typical kid stuff!!

Scrappy quilter said...

Very well said. And those two...so cute. Hugs

Junior said...

great post, love the pics.

Becca said...

Beautiful post, Lacey! Such an interesting contrast, two very different experiences, two absolutely breathtaking children. :-)

suelmayer said...

Lacey,love the baby picture of Jax and of course the princess is beautiful. Our journey with Down syndrome has also had some interesting twists but I enjoy each and every day with Sam.

April said...

Oh that was just beautiful! They are the sweetest kiddos

The VW's said...

Our boys definitely decided to do Ds very differently! I, like you, had no problem with the Ds diagnosis, but the rest of the issues....I definitely could have lived without! But, our boys are more inspirational than anyone else that I know and they are worth all the fight for sure!

I long to have a second chance at Ds! I want to know what it's like on the "other side" of Ds. Someday soon, I hope! Seeing Arina and your family together inspires me even more!

Love and Big Hugs!!!

Amy said...

ulibb
We didn't know either. I was different I did have the sense of loss and they Gabriel started ading all the special toys to make him not a normal DS baby. I love him to bits - though in some ways I think I am still grieving. I told a doctor friend I think I have PTSD. She told me I probally do.

Shelly Turpin said...

Amen

ANewKindOfPerfect said...

This post literally gave me chills, Lacey. You kids are all so amazing. I am so sad to know that kids like Arina and Jackson and all our other friends with DS are left behind simply because of having DS. It's mind-boggling to me!!!

nicole said...

Love how you love your kids!

Cole said...

What a beautiful family you have Lacey- you are indeed blessed. That last picture of your princess is precious! I want to kiss those sweet cheeks! They are also both so lucky to have each other.

Heather said...

Your babies are beautiful!! I loved reading about them. Enjoy your trip!!

Kristinn&Thelma said...

congratulations on your babygirl :) she is a beauty!! love from Iceland