The Gap Widens

Parenting is not for the faint of heart. Parenting a child with special needs is that times a gazillion.

My precious little peanut lights my life. She stretches the boundaries of my heart and tugs at the capacity of my mind. She puts a mirror smack dab in front of my laziness for me to face, whether I want to or not.

I am a much better human being because of this journey.

But it isn’t easy.

She has rounded past her first decade and still cannot talk. She has a few words but they are hard work. She has sounds and a few signs, and ideas and stories and things to get across. (Mostly so you’ll do things her way, but I can’t criticize that.)

We’ve had some beautiful moments of learning. There have been many times when things looked and felt exactly like my heart imagines homeschooling could be for her.

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And many, many dry, disorganized, exhausted moments in between.

But the number 10 is keeping me up at night.

It feels so old.

Have we missed the chance to get it right? To help her all we can?

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I had my heart set on taking her to a speech clinic for Apraxic kids in Michigan this summer. But the Michigan therapist says Ryan is not yet ready for her. Ten years later, and we are still at the beginning.

Go to Connecticut, she says. Get more help with Oral Motor Placement Therapy.

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Okay. I will.

On the phone I chat with the specialist in Connecticut who tells me, “What you see in the body, you see in the mouth.”

Oh crap. Good to know.

I have always placed large motor skills at the bottom of the priority list.

We can only ever have one number one priority at any given moment. Physical therapy has not been my number one for her since she started walking at 2 1/2. But I didn’t know that what you see in the body you see in the mouth.

Gotta be honest, that is not good news.

Because of Ryan’s diagnosis, she doesn’t qualify for any government help. Tri-Counties Regional Center has nothing to offer her. We pulled her out of public school because it wasn’t working. I guess I could figure out services through the district but because her private school is in the town of a different school district than the one she used to attend, I’d have to start over. Yuck.

So we are shifting our focus in the weeks leading up to Connecticut. In that spirit we joined a hike with moms and kids from Ryan’s school. (She goes to a hybrid school where she is on campus two days a week and homeschooled three days a week.)

We all started at the exact same time.

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Soon, we were by ourselves.

Not too long into it she wet her pants. (HOW DID I FORGET TO MAKE SURE SHE WENT POTTY BEFORE WE LEFT? I am not an amateur, for goodness sakes.)

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It would have been so. much. easier. to turn around and go back. We could have waited for everyone else at the beginning. (My older daughter and brother in law were with the group.)

But I am terrified that if I am willing to turn back, I put at risk every good thing that lies ahead of her.

So we plowed forward.

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We saw cows. In the middle of the path.

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It was hard for her. Hard for both of us. I am not a nature girl.

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Turning back could not be an option. I cheered and waited and promised dry clothes at the car. I told her forward was the only direction we could go.

As the gap between us and them kept getting bigger.DSCN3110

 

I fight the thoughts that creep in: What if this is the rest of her life? A series of experiences where the gap between us and them grows until we are totally alone?

It is in these moments that my mantra saves my life: Head up, look to the Lord. Head down, get to work. 

I cannot look around. Comparing us to others will certainly kill my dreams. The only thing that makes sense is to put one foot in front of the other.

On this day, that meant finishing the hike.

In August, it means going to Connecticut.

In September it means totally reorganizing my homeschool days because what you see in the body, you see in the mouth.

And on most days between now and then it means repeating over and over: Head up, look to the Lord. Head down, get to work. 

5 thoughts on “The Gap Widens

  • June 24, 2015 at 5:47 pm
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    What a beautiful picture of the journey of life! You can’t look around, only up, then down. Thank you for sharing. Prayers for you and your precious daughter as you bravely walk forward.

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  • June 30, 2015 at 6:25 pm
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    Robin- I am reading this blog in tears. I probably didn’t mention to you that I am a professional in Vocational Rehabilitation. I work with people with disabilities who qualify for state funding and I assess their skills and abilities and counsel them with employment decisions and options. Their stories fill my head and heart everyday, even on the weekend. I spend approximately 16-20 hours with each client and another 8-10 hours writing their reports. So often I feel unequipped to capture their potential and with the state program being so limited I often feel discouraged that my recommendations may not even be followed through with because “customized employment” is not competitive employment and that is all they pay for. I have counselors who want me to assess clients just to be able to document that they CANNOT work- which is NOT what I do…I am absolutely enamored and totally frustrated all at the same time with these precious clients I have. I can only imagine if one of them was my child. This blog post is absolutely BEAUTIFUL. It captures so much of what a parent with a special needs child goes through. You are a such a special Mom.

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  • July 1, 2015 at 8:15 pm
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    Robin, I’ve no idea how I missed this post! It’s so full of love and wisdom and courage. I leave with my heart a little fuller for having been a part of your journey. Thank you for sharing this! “But I am terrified that if I am willing to turn back, I put at risk every good thing that lies ahead of her.”… every good thing that lies ahead of me… I’m holding on to this one.

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  • July 2, 2015 at 5:23 pm
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    Robin, what courage, heart and joy. (Yes, joy… I see it in the grief and frustration. I live there too, with my 12 & 13 year olds). So many nuggets of wisdom here: one to priority at a time, eyes up at God and Get ourselves down to work. The idea that the mouth reflects the state of the body caught in my throat… My oldest is verbal, but with major delays. She is probably more bodily frustrated than I respect or respond to. Something to pray about and look for.

    Good to meet you through our mutual friend Liz. Blessings to you today.

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