Friday, October 26, 2012

Biggest fears...

As a mother of a child diagnosed with Down syndrome there are a lot of things that we are put on watch for health wise...since birth Camden has had regular blood screens for his thyroids and blood cell counts (leukemia). He is a heart kid (he has congenital heart disease) so we see a cardiologist regularly as well. We have screened for kidney problems and sleep apnea...and of course we have all of the typical kid things to watch for too (vision, hearing, ear infections...). I am not going to lie...this is by far the most difficult part of this journey for me. Not because of the extra doctors or check ups or blood work...but because we have to think about these things. Because every time I see a new bruise I wonder the what if's, because every time I see broken blood vessels I start my lookout, because Camden's slow growth makes me nervous... because I look at the color around his lips on a regular basis, just to be sure. And the thought of my little guy under going surgeries, bone marrow transplants and chemo therapy always gets me. Watching as friends receive the diagnosis I fear the very most makes my heart ache...seeing toddlers lose their beautiful locks of hair makes me teary. And searching Camden's little body for signs makes me cringe.

I have to remind myself on a regular basis that just because we are on the look out for these things does not mean that Camden will inherit any of them. There is a saying: "you don't know strength until strength is your only option"...and I know that is true...I think of the littles and their mommas faced with these types of challenges every day and I admire their strength, their courage and I recognize that those things were their only option. Some of these possibilities are things you would never, ever wish for any family to have to go through...but they are an unfortunate piece of our reality.

This post is not meant to scare away prospective/expecting or new is just to say that there are some difficult detours along the path...but there are mothers and fathers dealing with the same things, that they understand your fears and your emotions. That you aren't alone if this is your path. And if there is one thing about this community of amazing parents that we are so lucky to belong to it is that they are fantastic at supporting one another, about cheering one another's family along whatever detour you may or may not find yourself on. And we are thankful for that. I also want you to know that there is hope...that we live in a day where most of the kids faced with these challenges will find their way through to lead a healthy, long life. And that the little miracles that we are so lucky to have are strong, they are courageous and they are fighters above all else.

1 comment:

  1. This is a great post. I like the way you express your fears, but encourage other parents at the same time. Well done.

    We were very grateful that Beth didn't have a heart condition. She dealt with respiratory issues but grew out of them quickly.


Our ScrapBook...