Why I Won't Say 'As Long as My Baby Is Healthy'

In my pregnancy, you will never hear me say “as long as my baby is healthy.”

Don’t get me wrong. We all want, wish and pray for a “perfectly healthy” baby. But what if there wasn’t that guarantee? What if you knew there was a chance your child’s life could be a difficult one? What if you knew that chance was 33 percent?

According to the genetic counselors we have spoken to, our child has a 33 percent chance of having a congenital disorder of glycosylation.

No one knows the struggles more than we do. No one knows the numerous hospitalizations, appointments and sleepless nights more than us. No one knows the hard work and determination more than us. It took our son over a year to roll and four years to sit up, and he still needs assistance to ensure he doesn’t fall over and injure himself. A common illness can put him into the hospital for over a week. His body is fragile and we know he isn’t guaranteed a long life. We are aware that our four year journey has been filled with grief and loneliness.

Immediately when I found out I was expecting, I spent days thinking, what are we going to do? How are we going to do this? What if, what if, what if?

Then I would look at our son and the only thought that came to mind was:

Your life is worth living.

His life is worth living.

Not only is he a child with extraordinary needs, he, himself, is an extraordinary child. His smile seems more genuine than anyone I have ever come across. I feel he loves with no expectations or strings attached. He trusts with all of his heart. He has brought us more joy than all of the grief, fear, anxiety and loneliness combined. I wish every single person had the opportunity to peek over the railing and carry him from his crib in the morning. He wakes with unimaginable joy — as if he was thankful for another day. He never gives up — and we won’t either.

I won’t say, “as long as my baby is healthy.”

Because I know healthy isn’t a guarantee, and for us, it doesn’t change a thing. The genetic counselor reminded me we are already experts. We know. We are not delusional about what we could be walking into. 33 percent. No matter what, we will fiercely love this child and ensure his/her life will be a life worth living.

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Thinkstock image by Ingram Publishing