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.
