Tuesday, June 19, 2012

Life

On a side note to my post, I finally got some pigtails in my little girl and I just LOVE them.  She looks so adorable!!


Down syndrome has been on my mind a lot lately.  We go about life as though it isn't even there, but every once in awhile, it creeps it's way back into the picture and reminds me that it is a part of our family in so many ways.  I have often said, and am being completely honest when I say it, that I wouldn't ask for things to be any different, however, there are aspects of it that can make things very challenging.  


I think that I know it's there lately because we've had some things going on that make it obvious it's a part of our life.  We had Colin's x-ray done on his cervical spine to make sure he doesn't have laxity there (thankfully everything looked good on the x-ray) but while we were waiting for the results, my stomach felt uneasy thinking about the things that Colin wouldn't be able to do if it wasn't what we would have hoped to get on the results.  


We also had a checkup to the urologist because one of Colin's testicles are headed in the wrong direction so he will need to have surgery to fix that in August.  While we were there for the appointment, the doctor told us there would be 3 reasons why he should have it done: higher chance of malignancy (if it can't be checked in the future since it's hidden), a chance of a strangulated testicle, and to prevent sterility.  However, in response to the last reason (in a professional manner), he said "but that's not the issue in this case".  Very early on when Colin was a newborn, I found in my research that the majority of the time, boys with Down Syndrome are sterile and it had really upset me at the time (that was when all I thought of was the future).  Being reminded of that affected me again in a different way and I haven't really been able to shake it.  We live now in a way that Colin will be able to do anything he sets his mind to, but this just reminds me that there will always be some limitations/challenges...


We also had our annual check up at the Trisomy 21 clinic at CHOP last week. The appointment went great and the developmental pediatrician there really makes us feel good about what we are doing with Colin.  She talks to Colin and treats him like any other little boy.  However, when we are there, we address the guidelines and the things we need to stay on top of, so just always reminds me it's there...

I'm sure that no matter what the birth order and where you have a child with DS, there will always be things you think about.  The other day while being changed, Kailey rattled off counting to 3 like it was no big deal.  It made me feel so happy for her that it came so easy to her, but sad for Colin that he always has to work hard at what he does.  

...and this is all just life, our life, but sometimes, when faced with challenges, it's easy to feel not so good about certain things.  We count our blessing all of the time that Colin is healthy and happy, and has taught us to slow down and appreciate so many little things...

So, I have those days where I just need to let it out, and then we just move forward and go about things as we usually do.  It's just how life is...

3 comments:

Angi B said...

Thank you for posting this one! You read my mind :) I love your attitude and it helps me keep my chin up too.

Jenny said...

I have to say that the first few days after Russell was born the Doctors all sat us down to talk about Ds...When I heard Russell wouldn't have kids I was devastated...And I didn't know why considering all the other medical issues we faced...But it hurt so deeply. I felt something of his life and future was stolen from him.
I have come to terms with it now...Russell's life will be so full and happy regardless...He may or may not even want children...Anyway, just wanted to tell you that was one of the things that hurt me the most in the beginning too, so I understand.

Also when I watch my little Nephew learning things in a day that took Russell weeks or even months to grasp, I feel a pang of jealousy. It just makes me sad that Russell will always have to work that much harder...But that just makes him all the more amazing.

Oh, and LOVE the pigtails! So cute!

Becca said...

Looove that photo of Kailey!!! Beautiful!

Yep, it's a whole new reality for us, having to keep all of these reminders and cautions in the background as we go about our days. Sometimes I keep it all pushed aside, never thinking about or accepting the limitations that Samantha is sure to face. But sometimes, when I really, really think about it, it makes me a little sad. And then I realize that as long as she's happy and healthy and loved, nothing else really matters. :-)