“As long as it’s healthy.”

*Disclaimer: I did not write this to get into any debates, so please refrain. This is my blog. My feelings. It’s okay if you feel otherwise. Please respect my feelings/opinions and I will return the favor.

In my pregnancy, you will never hear me say “as long as it’s healthy.”

Don’t get me wrong. We all want, wish, pray, and long 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%?

According to the genetic counselors we have spoken to, our child has a 33% chance of being affected by 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 whatarewegoingtodo? howarewegoingtodothis?? whatifwhatifwhatif?? 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 is more genuine than anyone I have ever come across. 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; thankful for another day. He. Never. Gives. Up. And we won’t either.

I won’t say “as long as it’s healthy.”

Because I know healthy isn’t a guarantee, and for us, it doesn’t change a thing. The genetic counselor reminded me that we are already experts. We know. We are not delusional about what we could be walking into. 33%. No matter what, we will fiercely love this child and I can guarantee you, 100%,  his/her life will be a life worth living.

 

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5 Replies to ““As long as it’s healthy.””

  1. This made me tear up, thank you for sharing. I have a child with cystic fibrosis, a genetic dieaease that I and my husband are carriers for. She is 5 years old, and is a tough, loveable, happy little girl even with all she has to do everyday to help keep herself healthy and out of the hospital as much as possible. I am currently 17weeks pregnant with our 3rd child and we know there is a 25% chance that this baby will also have cf. But when I look at my daughter I havr thought similarly to you when you lok at your son. I agree 100% with your sentiment, her life is woth living. No matter the out come we will love this baby because their life is also worth living. Thank you so much for sharing your thoughts!

  2. God bless you and your family!! You are a living testament to sacrificial love and serving others needs more than your own! You are strong and a true example and reminder to all of the beauty of life! All life, without exception! Prayers and support always!

    Jessie

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