Saturday, February 11, 2012

My son is not Sick, he is...Zach


As a rookie special needs mom, I can finally pinpoint to the first of many struggles that we've been facing in this bumpy road. When we knew about Zach's ultrasound findings, I did pray for his miraculous healing, I read Psalm 139 each night and cried over it, sobbed, begged for a “normal” child, or just an orthopedic problem, but the ultrasound was just the tip of the iceberg and we are still trying to figure out the extent of the ”problem”.

I also asked everyone to pray for his healing, for him to be “normal”. Now Psalm 139 has a whole new meaning to me: You knit me together in my mother’s womb, I praise you because I’m fearfully and wonderfully made… and that is probably the answer to my prayer as painful as it can be. God maybe telling me: I’m not fixing/healing Zach because he’s not broken, I knew him before I made him, I love him that way and my ways are not your ways. Zach is not like the other babies, we don’t know what he will do or not, but we do know one thing: He is fearfully and wonderfully made.

Now a month in the NICU later, I still encounter people with good intentions telling me: I hope he gets better soon, so he can go home. (?????) Some other times I tell the whole spill of issues that my boy has, and then I hear: Well, he can outgrow those things, have all the surgeries and therapies thanks to all the advances in today’s medicine then he will become normal. Seriously? I feel for the people with sick babies I really do, but all this time I’ve been talking about a whole other animal that people (myself included)  has a harder time to accept: The disability.

My son is in the NICU not because he is sick or has a disease and needs to get better to go home. He is there because they basically need to figure him out, make him stable, they need to make him as functional as possible so I can take care of him with the best possible quality of life. A disability is not a disease, the difference seems subtle but it’s not.  Accepting and understanding that difference is the first step to accept my son or any other child with disabilities.

He is not sick, he is... Zack.




3 comments:

  1. Claris!!! i've been all morning reading your blog. It breaks my heart, it wakes my most deep tenderness, it makes me optimistic, it makes me love you more!!

    I know, I am part of those people who just don't get it sometimes, so reading this brings me a little bit closer to what you are going through. All I can say is that I love you, we'll be there for you somehow... and you'll get through this one bit at a time :)

    I loved the post on your blog, I hope you can get more support like this...... I love you are doing this. For me because it brings me closer to you, but specially for you. I'm sure it will help you A LOT to get along.
    I love youu

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  2. Hi Clara - just checking in. Hope things are going okay. Thinking of you and Zach.

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  3. Thank you for sharing your comments on "Uncommon Sense." This is why I made up Undiagnosed Children's Day - for people to have a platform to share their stories, celebrate their children that don't fit anywhere else and to find community. I'm so sorry for your loss and I thank-you for joining us in Blue Day.

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