Three weeks ago my son collapsed at home while we were getting ready for bed and said, “Mom, I can’t feel my legs.” We’ve been in the hospital for 22 days as of today, first in acute care and now in rehab. He’s currently paralyzed and diagnosed with a condition known as Transverse Myelitis. Transverse Myelitis is rare and the onset with a healthy young man of eighteen is even more strange. I’ve always thought my children were “one in a million,” but this isn’t exactly what I meant. There are a lot of things I thought I knew or believed pre-Tranverse Myelitis that I have a whole different perspective about now. There are other beliefs that have only been strengthened through this experience.
My first major shifts have come in understanding what kind of support I want to offer in the future for families in crises. I used to think that if I stopped by the hospital I’d only be “in the way.” I now understand that if I can bring positive energy into a hospital room for even five minutes, that’s a gift. I will trust people to tell me to come back another time if needed. I won’t stay away next time. I also thought I had to know people really well to show up for them. Where did that idea even come from? People who haven’t seen us in years or barely know us are materializing from everywhere–and helping. It was hard to receive the help at first, but several people have told me these wise things:
*Receive with grace and just say “thank you.”
*Don’t do things other people can do for you right now.
*Tell people what they can do.
*People want to feel a part of things. Allow it.
*Know that you will be able to pay it forward in the future.
*Sometimes ask for needs, but wants are OK too.
I have been making connections between the medical world and the educational world constantly. Here was what an occupational therapist said to Jamin during her first visit. “Our job is to meet you wherever you are at. If you wake up with pain one day, we’ll do less. If you are having a strong day, I’m going to push you hard. Each day, we’ll just build on what you can do based on where you are at.” Does that sound like a great coach? It does to me. While we aren’t dealing with physical paralysis in the classroom, there is some emotional paralysis that has to do with change. Meeting people where they are at each day and building on strengths is the way everyone gets better.
Another therapist explained, “I’m going to teach you one way to transfer to your wheelchair. I never use a slide board with patients as young and athletic as you. But my colleagues will teach you other ways and you’ll experiment with your own and you are going to figure out what works for you. No one else can tell you that.” I wanted to hug her and tell her that’s what great coaches do. Now that I think about it, a lot of those early days are a blur, so I may have hugged her. I probably did.
Finally, the opening image for the post has me doing some thinking about RTI. Almost as soon as we reached the rehab floor we started hearing this buzz about the discharge date. The OTs, PTs, nursing staff and doctors got together to determine goals that my son needed to reach with independence before he could leave the hospital. Then they estimated how long it would take him to meet those goals. That date was published on the white board for us all to see. Each individual and team refers to it as they work with him. It is the day he transitions back to his “core” life. I wonder what that would be like for young readers who are getting an intervention with a different program or approach. If the intervention teachers, counselor, classroom teachers and the administrator all focused on a date, say February 2nd, and their goal was to get that student to independence and back into the core by the time, what would that mean for our reader and the collaborative support he receives?
I don’t know what this latest life event means for the blog and the cool thing is–I don’t have to. I like this quote by Gilda Radner:
“I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious ambiguity.”