I am probably fooling myself to think that my face is actually blank. More than likely my expressions are communicating something.

None the less, lately the phrase is swirling through my mind with striking regularity.

It is how I imagine I look when I just DON’T GET a thing. Or am just NOT BUYING a thing, or idea, or–for that matter–a person. That is probably not the most Christian thing I have ever thought…

But, hey, I am a work in progress.

Changes are coming my way. I can feel them blowing in the wind…and the cracks in my denial are getting too obvious for me to ignore any longer. As I have said before, parenting is HARD.

Parenting a child with Special Needs is that times a gazillion.

My daughter’s learning delays are severe.

There. I said it.

It is time to face the fact that we are in a stagnant place of learning…needing some momentum to be built. It is not that there are not pockets of beauty, wonder and progress.

 

 

 

 

 

 

 

 

 

 

 

 

 

There are.

But if I stop long enough to face things, the results are not adding up fast enough for us to continue on the path we are on.

Again. Something needs to change.

My hubby and I both feel the Special Education System available in the public schools is not the best fit for her. When I have visited the classrooms I leave feeling fatigued…and so does she.

These last few years have been so good, but time marches on faster than our clock can be set for.

And I know the future is calling to be different than the past.

I hate that I don’t yet know what that means. And I hate that I don’t have a billion dollars to hop on planes, or start a school, or pursue the millions of ideas that flow through my brain in the still, small hours of the night.

And so my face goes blank when things that I thought were good progress change.

The gymnastics class I put her in, to make her stronger and help with coordination, updated its format and rather than attracting 4 year old kiddos, it is appealing to two year old kiddos. That changed the dynamic irreparably. (She already looked like Honey, I Blew Up The Baby.)

Back to square one, with the next great thing to try 20 minutes further down the road. (Each way.)

When your child has a chromosomal abnormality no one else has ever had there is no road map. It is hard to find a pattern, because there often is not one. What works for so many others falls radically short for us.

Yet in other areas, she shines.

She behaves incredibly well. She is helpful and sweet. We don’t want to change her we just
want to help her become the very best she can be.

So the research begins again to find the ideas; to seek out the help; to look at things differently. Honest question fold into fears and insecurities. Do I need to make money, so we can invest more in her? How can I work outside the home and educate her well? What about Bible Study and the few things I do to keep sane? What will my life look like with changes? Can I do this?

Next week I head to a conference for speech therapists. I am not a speech therapist. I will sit and listen and learn and although I know I won’t understand everything, I believe I will understand enough to come home with more tools than I have right now. It is hard to be parent, teacher and therapist with limited tools. 

Ryan is over it. She needs new ideas to engage her.

And I will begin praying for an Oral Motor Placement Therapist closer than Connecticut. Perhaps those amazing resources I found across the country can be annual pilgrimages, with on going support in state. These are new questions I am asking myself, because I didn’t realize that Ryan wouldn’t love having me do all. the. therapies.

And patching her eye, because one is straying again.

And telling her to make her bed.

And to stop eating peanut butter from the jar.

So the blank look on my face begins to fade…The simple act of writing it out brings new ideas. New hope is arising. God is so good. My eyes can start to look for a new path without my chest feeling strangled.

There is  so much hope in the imperfect. I have moments when I struggle to see it…but those moments are never allowed to reign in victory. That is each of our journeys in parenting, isn’t it?

I am more convinced than ever that all kids have special needs; some just have a diagnosis.