Monday, December 23, 2013

When You Just Don't Know

I was sitting in the conference room at work just last week and we were preparing for an ARD meeting.  There was me, a speech therapist and also a physical therapist, both ladies who I've come to love and admire.  I had just gotten off the phone, setting up Addyson's first Occupational Therapy appointment.  The physical therapist I work with just so happens to have a daughter who has struggled similarly to Addyson.  Again--God ordained.  The speech therapist there has a daughter who is expecting who has had a miscarriage before and just telling us how she prays all the time for this baby to be okay and healthy.  I knew what she meant.  All of us want healthy children.  I don't think anyone hopes that they will have a baby who will have developmental delays.  And then she said something that has just stuck with me.  I guess you just "rise to the occasion."

Rise to the occasion.  More like sink to your knees before God.  There is nothing more humbling that not knowing what the future holds for your child.  I mean, I know none of us know what the future holds for our kids.  But most of us know our kids will learn to sit up, walk, talk, play.  It was just last night when someone talked about how Addyson would have to fight the boys off when she gets older, suggesting that she might one day date.  That's nothing out of the ordinary, right?  Why wouldn't she date when she's older?  I don't mean this to be a downer of a post, but it just really got to me last night.

We just had Addyson's 6 month neurology appointment and received great news confirming that the MRI had shown no signs of brain damage!  But the doctor couldn't tell me why Addyson still presents with hypertonia.  Why are her muscles still so stiff?  I know that I should celebrate all of the amazing progress she has made.  And I do, every day I thank God for how far she's come.  For the fact that she's doing things that I was downright told she wouldn't be doing by now.  She's rolling over, she's sitting up, she's starting to eat solid foods.  She's using her little hands to grab toys and chew on them.  It's such a blessing.

But the other part of me is so terrified.  I am so grateful, yet at the same time, so scared because I don't have any answers.  I am left to my faith in God.  And to be honest, sometimes my faith is so small at times.  When the person talked about Addyson dating in the future, it was if the world stopped spinning for a moment.  I just stared at her and tried not to tear up, wondering if we will get to share those special mother-daughter moments.

The neurologist thankfully didn't just send us home, saying, well she doesn't have cerebral palsy, good luck!  Thank goodness because I might have come unglued.  He is committed to finding out what exactly is going on with my sweet girl.  He did offer a hypothesis.  Dopa-Responsive Dystonia.  Dopa-responsive dystonia is a disorder that involves involuntary muscle contractions, tremors, and other uncontrolled movements (dystonia). The features of this condition range from mild to severe. This form of dystonia is called dopa-responsive dystonia because the signs and symptoms typically improve with sustained use of a medication known as L-Dopa.  There's a great video on YouTube you can watch about it, here.  However, I don't feel like this really fits Addyson for many reasons, but mainly because everything the research says tells me that its a progressive condition.  Addyson is improving vastly in her therapies.  However, we will do some testing right before her 1st birthday to see if this might be the answer.  The doctor wasn't pushing for testing now because she is doing so well.  She's my miracle baby.

I guess I just want everyone out there to know I am human; I don't have some super-powerful faith.  I know I should be celebrating her accomplishments, and I am.  I do every day.  In fact, she blew some raspberries for the first time today and of course I thought it was the greatest thing!  I just wish I had more answers.  I wish I knew if she really did have a stroke in-utero and her sweet little infant brain regenerated.  It's crazy, but that does happen.  I wish I knew if me or my husband carried this genetic mutation that causes Dopa-Responsive Dystonia.  We will get an answer on the latter part sooner rather than later.  The fact of the matter is, despite trusting God, sometimes (a lot of times) I yearn for worldly answers, too.

So what do you do when you just don't know?  Rise to the occasion or sink to your knees before God?  I know my answer.  I pray for strength for another day.  I pray for more miracles.  I offer thanksgiving to God for all the things he's already done in my sweet family's life.  And I repeat this scripture to myself when I don't know what else to do.

Do not be anxious about anything, 
but in everything, by prayer and petition, 
with thanksgiving, present your requests to God. 
And the peace of God, which transcends all understanding,
 will guard your hearts and your minds in Christ Jesus. 
(Philippians 4:6-7)


  1. Thanks for posting this. It was just what I needed to hear. I just got a new job and things have been changing in my life. I am learning not to worry and turn it all over to God, no matter what happens.

  2. I was on Pinterest looking for crock pot freezer recipes and somehow landed on this page. I'm a mom, so I read, its what mom's do. I have a friend, she lives in Houston but drives HUNDREDS of miles to Cook Childrens to see Dr. Fernando Acosta. He has done wonders for her daughter with dystonia when others just wrote her off. Just thought I'd pass it on.


So glad you stopped by! I'd love to hear your thoughts!

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