The Diagnosis: One Year Later

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One year ago today, were informed that our son was affected by Peroxisomal Biogenesis Disorder (PBD).

I remember it like it was yesterday. Standing in our geneticists office, the doctor asked if her assistant could take Laynie out of the room. Kevin later told me he thought it was just because she was getting into everything; but not me… I knew. I knew the moment she asked Laynie to leave that she was about to deliver the most devastating news we would ever hear..

“Your son has PBD, and if he makes it  through his first year of life, he’ll have a 77% chance of making it to school age.”  We quickly realized that someday we would bury our son.

If you’re a parent, you can imagine that moment. If you’re a parent of a terminally ill child, you can truly empathize with us in that moment. As we stood there, dazed and confused, I recalled the words of a dear friend- “Our children do not belong to us.. They’re on loan from God.”

As I spoke those words to Kevin, they brought a sense of comfort and peace to us that day. And they still do, one year later.

Kevin and I have a choice whether or not we allow  Gideon’s diagnosis to hinder us or to grow us. Will we let bitterness tie a chain to our future? Or will we choose to walk in freedom in the present? We can choose (and do choose) happiness despite our circumstances; but it’s definitely a daily choice…and some days are harder than others.

I don’t know much, I’m only a year into this diagnosis, but I do know this- unresolved anger leads to bitterness; and bitterness poisons the heart.

One year later, I can honestly tell you that our situation still sucks. NO ONE should have to go through this. BUT the lives that have been affected by our sweet baby boy…. I wish I could tell you all the stories.

What I can tell you is that God can bring good from ANY situation… from ANY circumstance….from ANY tragedy…from ANY hurt.

There’s nothing that God cannot carry us through and redeem…

If we let Him.

 

 

6 thoughts on “The Diagnosis: One Year Later

  1. I don’t even know you, but have followed your story from the beginning. You are such a strong woman and I admire your outlook on life. God chose your family for Gideon because of who you are. Because you are the perfect mama for him.

    1. Thank you Patricia. I sincerely appreciate your encouragement. God bless!!

  2. You are in my prayers daily, cherish every moment. He is absolutely adorable. God bless all of you!

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