Some of the questions that run through my head along this journey are what makes it so.very.hard. Questions that no one else knows are there, but that just sort of flash through my head, they come and go quickly, but happen often enough to make my heart ache.
When Sammie B calls for me in the night, or after I put her down to sleep at night, I wonder if she's laying in her bed, wishing she could jump up and run to me.
I used to wonder if she's MOTIVATED to move. She used to always seem so content to point to (or later ask for) what she wanted and have us get it. But lately, lately, I know she WANTS to move her body. It makes me feel like my girl's body has betrayed her. And that sucks.
Right before Christmas we went to a parade. She was in the jogging stroller, and as we walked by a field, she kept saying "me, out" and pointing to the grass. . . she doesn't want to be just sitting in her stroller. So, I got her out and helped her stand and assisted her in walking around. Then we sat on the curb and watched the parade. I grabbed candy that was thrown her way, but many times, the other kids around us got it first -- they ran to it, and picked it up. Watching the other kids get the candy, Sammie B pointed to them and said, "me run!" and my heart shattered in a million tiny pieces. My girl wanted to run. My girl IS MOTIVATED to move, she just can't. Not yet. That moment hit me hard. It was also one of the motivating moments behind our goal this year to get Sammie B whatever equipment she might need to gain some independence and mobility. I thought that if we'd already had her gait trainer, she could have been in that, and had more independence that day at the parade. I wondered if she would have liked that. I hoped she would. In a way I cannot put into words, I ached for my girl, and wished I could trade bodies with her. Run FOR her. But I couldn't. So instead, with a heavy heart, I chased as much candy as I could, and sat on the curb next to her and enjoyed our lollipops.
As she gets older, the differences between her and her peers is growing. No longer is it that I feel the twinge of pain because I see a kid her age starting to walk. Now, I see kids born long after her walking, and kids her age are learning to skate, ride bikes, play t-ball. It hurts. But again, it motivates us more than ever to find way to help her be independent and age-appropriate.
As I see this gap widening, I wonder how other kids will see her. Will they laugh at her? THAT thought puts tears in my eyes in an instant. Will they see her magic, as we do? (I've not met a person yet who hasn't seen it . . . ).
The questions seem to always bring other questions. Sometimes, a questions runs through my mind and I'm able to immediately move on . . . to go back to enjoying what I was doing, to stay in the moment. Other times, questions give rise to questions. It almost feels like the first question comes at me slowly, and then, suddenly, others are running through my mind at warp speed. Like, are we doing enough? Is there a doctor we haven't seen that we need to? Should we keep pursuing an answer? How can we make her life easier? Why her? Why was my child chosen for this struggle?
My magical, sweet, amazing Sammie B. The little lady in lavender glasses that just exudes love like its her job. Why her?
My sweet Sammie B, if I COULD trade bodies with you, I would, in a heartbeat. I'd give a limb to have been able to see YOU running after that candy at the parade, knocking down anyone that got in your way. I love you little lady, and you work harder than any three year old ever should and you make me so very, very happy and proud, every single day.