Sunday, November 15, 2015

To the Newly Diagnosed Parent

Last week I had the privilege of talking to a mom with a newly diagnosed baby boy with hemophilia.  Hearing her pain, grief and devastation over the phone was heart wrenching.  I wanted to reach through the line and give her a hug to reassure her that things would be okay.  Our conversation brought back those memories of what it was like when both Julian and Caeleb were diagnosed.

"What did I do wrong?"

"Where did this come from?"

"Will he survive?"

"What won't he be able to do?"

"Will I know when the first bleed happens?"

"Am I going to always be afraid?"

These are some of the questions that raced through my mind when Julian (now 19) was newly diagnosed.  I had no idea what hemophilia meant and could not grasp the reality of what seemed to be this huge "thing" in my life.  I almost forgot to enjoy my beautiful baby boy.

You are not alone.

When you are newly diagnosed I think one of the hardest things to do is remember to love your child in the moment.  Sometimes you can only think about life in days, hours, moments and even breaths.

One thing never changes…the love you have for your child.

You will figure out the rest…one breath at a time.

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