Chapter 6-Walk With Me

Walk With Me-Six
By Carol Englehaupt

You never know when you’re going to meet an angel. When Josh turned a year old, months before his trip through Mayo Clinic, right in the middle of my sleep deprivation era, the phone rang, and I met an angel.

Her name was Chris Myers. She introduced herself, told me she lived right down the street from me, and in a small town, population 400, what are the odds of that? She was an occupational therapist and she worked for LaSalle County Easter Seals.

I knew that Easter Seals existed. I’d carried pennies to grade school and put them in the cup during Easter Seals drives, but I didn’t quite know what they were or did, and certainly hadn’t been aware that LaSalle County had one.

All I know is, at a time when I was desperate, tired, and struggling, the phone rang and I was offered help. Not hope. I already had that, but actual help. I can’t tell you what a burden that lifted off of me.

Easter Seals had a program called Zero to Three. Their purpose was to catch children at risk and give them extra help until they turned three at which time the school system would take over to provide early intervention schooling.

All of this was new to me. My tired brain had trouble grasping what Chris was telling me but the one thing I did understand was she would help me in our own home.

I learned so much from her. I learned about such things as range of motion exercises, something I was already doing by instinct. This involved stretching arms and legs to make sure everything stayed functional even if Josh couldn’t voluntarily use them.

I was able to tell her the things I’d observed but couldn’t quite understand. I would watch Josh lie in his crib with the mobile hanging above. I’d see him looking at the mobile, and by then I’d gotten very good at reading his eyes and face. I could tell he wanted to touch that mobile in the worst kind of way. And as I watched, I noticed him doing something I thought was strange.

He would look at the mobile. Then he’d turn his head to locate his hand. Once he could see his hand, he’d reach for the mobile. It was like he didn’t automatically know where his hand was until he could visually see it. That disconnect with his own body is still with him.

Thanks to Chris, my life became easier, and Josh’s enriched. She was a life line for me; a way to get to information. I didn’t have a clue about physical therapy, or feeding techniques, or ways to adapt equipment and games. The list is way too long to relate. She provided a service that not only improved Josh’s life, but helped our whole family.

I’m not good at asking for help. It’s been ingrained in me from childhood to be independent. My mom pulled me up short one day by telling me that it’s okay to be proud as long as long as I wasn’t being stupid proud.

I honestly hadn’t thought of my independence as a form of pride. But looking back, I remember how exhausted I was, how emotionally overloaded and burdened I felt. Never once did I wave the white flag. I should have. There is no shame in asking for help. Heck, I should have demanded help, but I didn’t, and I can’t go back and change what was.

I’ve been humbled many times, and I’ve found out that is a good thing. Blessings come in so many forms. It’s hard to have a stiff upper lip when your eyes are full of tears. Not sad ones but full, over the top grateful ones. I’ve had my heart ripped out more times than I can count. Not from sadness but from absolute joy and amazement at miracles that I would never have seen if Josh wasn’t in my life.

And not just from Josh. Josh has led me into a whole circle of friends that I never would have met. I don’t remember all their names, but I remember their faces. I know their stories. I am so absolutely joyful they have touched my life in some way.

Sometimes I think back and try to imagine what life would have been like without the disability. Of course, I would never have chosen this route for Josh or our family. It’s a hard road, strewn with heartache, but it’s also an amazing road filled with unexpected riches and highlights. I can’t regret anything, except maybe wishing I’d asked for help because help is out there, and angels come in many forms. It’s really easy to answer the phone.

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