My Burden Carrier

Man, yesterday was hard.  

Navigating life with special needs is hard.  Being a mom is hard.  Being a working mom is hard.  Planning for things you never thought you'd have to plan for is hard, keeping your head up is hard, juggling decisions is hard, avoiding defeat and managing fear...it's hard.

I'm thankful My Creator is My Burden Carrier.

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I was giving Weston a bath last night and since it was just the three of us at home for the evening, I took Tessa in the bathroom with us in her wheelchair.  Her bath was next.  

As I am bathing Weston I look up and this is what I see...

My little girl.  

Ears off. Eyes off. Legs off. Sitting a bit awkwardly in her wheelchair and just gazing up.

My thought in that moment:

~One of those nights when you sit and wonder how it is that your beautiful little girl...in her natural state...can't hear, can't talk, can't sit up, can't walk... and yet somehow life goes on...joyfully for the most part. Thank goodness it's not on me.~

We are in the planning stages of a very big surgery for Tessa this summer.  One we had been told in those early years after diagnosis, to plan on.  For some reason I had more of the timeframe of age 8-10 in my head for this particular surgery...not 6-7.  I know it's basically the same...but it hit me like a ton of bricks.  We have been so very fortunate to have had very few critical care moments with our sweet girl...mainly centered around seizures.  And as far as surgeries go, only 3 and all elective: ear tubes, right cochlear implant and left cochlear implant.

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Spastic Cerebral Palsy is a beast.  

It's an ugly and stressful freakin beast.  It is the very reason for the surgery coming up this summer.  On my really bad days, I curse it.  For everything that it is and everything that it does to Tessa.  Between it and Epilepsy...there's a lot of cursing going on in my head.

  

I'm learning more about the surgery as the days pass and we are waiting to have a consult with the surgeon in late November.  It is a preventive surgery.  Preventive in that if we don't do it within the optimal timeframe, it could mean a much bigger, more serious surgery down the road.  

The surgery - Bilateral Femoral Osteotomy

This link seems to provide a pretty good overview of the surgery.  I honestly haven't read much of it because I tend to rely on the information given to us by the medical professionals that are specifically involved in Tessa's care.  I also usually wait to write anything until I have ALL the details (which we'll get in late November)...but for now, this will do.  From my limited knowledge base at this point, the surgery is necessary because Tessa does very limited weight-bearing (standing, walking, etc) and her ball and sockets are not forming and therefore her hips are not forming correctly.  This surgery will manipulate and re-position the ball of the femur in the hip socket.  The bigger more serious surgery we are trying to avoid down the road? ~ hip replacements.  It's a lot to talk about and consider for our 6 year old little girl.

Preliminary Planning has begun.

Again, without having all of the specific details, we have begun our planning around the broader details that we know for now.  We are planning for the surgery to occur at the beginning of the summer and we are planning on a 6-12 week recovery for Tessa.  We are so thankful for Darin's teaching job and the flexibility it allows us in the summer to tend to these very things.  I can't imagine what things would be like if Darin and I were both having to plan and consider time off of work to accomodate a necessary procedure like this.  But ya'll, it's still so hard.  This is when being a working mother challenges every fiber in me.  The reality is, I can't be there in the way I desperately want to be there for Tessa during the entire timeframe.  The desperation in me screams 'drop everything and run...do it...be there...for all of it...whatever it takes'.  But I know God does not desire desperation for us in our lives.  He calls us to trust and have faith that He will provide for what is up ahead.

Thank goodness it's not on me.

It's On God...This Beauty is His...

She is simply stunning! 

6 years old, holding her bottle, ready for bed and ~ Stunning! 

God has shown us that His ways...His provisions often look very different from what we think and expect. We are faithfully anticipating His goodness in this season of planning and preparing.

Psalm 32: 8 (NIV)

"I will instruct you and teach you in the way you should go; I will counsel you with my loving eye on you."

~Whitney