becoming a mom to a special needs child


I know the words are coming.  It is the entire reason that we are sitting in this room.  And yet as he opens his mouth to speak, I feel my stomach start to knot and my heart rate quicken.  Deep breaths mama, deep breaths.  This isn't the first time I have had to use every ounce of self control to keep myself from just busting into tears right there in the doctor's office.  I also know that it won't be the last.
Three years ago this month was the first time I saw her face.  The birth date said she was four but the photograph looked to be a child no more than two.  Just one face among a sea of children. Each child listed offered a photograph and a few sentences of biographical information.  People often ask us how we knew she was ours.  It was one of those moments that can truly only be understood by others who have walked the same journey.  God gave us a passion to pursue her regardless of the costs.  He gave to us what we could process for that moment.  As the months continued on we learned the depth of her medical issues and continued to say yes to whatever would lie ahead.

A paper child is not the same as a child living in your home.  We did what we could to prepare for her arrival.  The head knowledge was all there.  We read the books, we took the classes, we talked to others who had walked this road before us.  Now it was time to put it into action.

The to do list is time consuming, but easy for this nurse to do.  Call doctors.  Schedule appointments.  Follow through with therapy.  But I quickly learned I am not her nurse, I am her mom.  A title that comes with more than a checklist. This was the part that for some reason caught me by surprise.  I had missed out on the processing that happens when you are given the opportunity to be with your child from the moment of their diagnosis.  Each moment that my heart opened to her, each moment that hers did the same, along with the beauty also came a wave of pain, anger, and grief.

The past two years have been an intense journey for all of us.  A journey that I am choosing to believe has prepared us for this next season.  I say choosing because my natural response was to tell God that I wasn't going to do it.  "I'm done.  This is beyond my capacity.  You have chosen the wrong family."  This was the mantra in my brain after our appointment.  I woke in the middle of the night with a thousand questions and no practical solutions.  I was not going to be able to plan my way through this one.  After swirling in these emotions for a few days, God reminded me of Moses.

God appears to Moses in a bush that is on fire but is not being burned.  He shows His power and His ability to do beyond anything Moses could imagine.  He doesn't stop there.  God continues to demonstrate his authority by turning a piece of wood into a snake and healing a leprous hand.  Just one of these things should have been enough to erase any doubt in Moses's mind.  Yet still Moses continues to look only upon his own inabilities rather than trust God to speak through him.  We can read that story and think poorly of Moses, but how many times do we do the same thing?  God has provided for our family time and time and time again.  He has showed up in ways we could have never imagined.  He has done the impossible multiple times over.  And still here I stand saying to God... I can't do this, you need to ask someone else.  As I read through the story of Moses, I realized that my complaints and worries were the result of my disobedience.  Our God, the great I AM, goes before us.  Why do I fear and let anxiety grip my soul when instead I can choose to place my hope and my trust in Him!  How quickly I can forget His faithfulness.

I am still not excited about Elie's surgery in November.  I am still working through being angry that I wasn't with her since birth and that she didn't receive the medical care she needed during those first years.  I do not understand how it is all going to work out.  But I do know that I can trust God who called us to this journey.

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