what really matters 

Well, we are here again.  It’s National Hydrocephalus Awareness month, and we are also just a couple of days shy of our little one’s next MRI and consult with her neurosurgeon and neurologist.  The reminders of our journey are upon us once again.  

And to top it off, Facebook decided to remind me of our first peek at our sweet girl, three years ago this week.  I look back at that day now and I’m struck by the irony of it all.  I was so impatient to find out if that baby was another girl or if we would have a boy in our house.  The whole family was there, anxious to see… And she was another girl.  And I realized that all that really mattered was that she was healthy.

I had much to learn.  At that moment, she was healthy.  She was perfect.  And a month later when we had our second ultrasound, she was still healthy and perfect.  There was no indication of any problem.  But something went wrong in the months to follow, and in the week before her birth we learned that she wasn’t healthy.  And in that moment, I realized that maybe that’s not all that matters.  Because her imperfections didn’t make me love her any less.  Her compromised health didn’t change the way I felt about this precious life.

By all means, of course I would love for my daughter to not have to face the struggles she has.  But I spent so much time saying that all that mattered was that she was healthy, when in fact that wasn’t all that mattered.  I gave birth to a fighter.  I have been in awe of her strength from the moment I met her.  Life hasn’t been easy for my warrior, and she has the battle scars to prove it.  But she doesn’t give up.  She pushes on and does so with grace and joy.

Her life has changed mine, and changed it for the better.  I’ve realized how little I know and how important the little things are.  I’ve learned to accept the unknown, to trust the Maker, and to embrace the journey.  I’ve discovered life isn’t about me or my plans.  

While I never want to see my daughter hurt or struggle, I don’t regret the road we’re on.  God has used it for good.  Connections have been made, friendships have grown, faith has been refined, prayers have been answered, hearts have healed. I’ve seen hope in the seemingly hopeless.

I still have dark days- uncertainty lurks around every corner, and the journey isn’t an easy one.  Fear creeps in, especially during these times of scans and tests and doctors.  My daughter walks around with cysts on her brain, fluid where it shouldn’t be, and areas of brain damage.  She has a list of crazy diagnoses that include porencephaly, hydrocephalus, and life-threatening seizures… That’s a heavy load.

But God isn’t finished with us yet.  He’s still writing Harper’s story, and using it for His glory.  So when my heart gets anxious over these upcoming tests, I remember that no matter what, my love for my daughter won’t change.  But more importantly, His love for my daughter, and for me, won’t change, and ultimately that’s all that matters.

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