Our daughter started off her kindergarten year just like every other eager five year old. She counted down the days until she could get her oh so grown self onto the bus, make new friends, meet her very first teacher, learn to read, and gain that little bit of fly-from-the-nest independence that many children desperately urn for by their fifth birthday. Sadly, due to her declining health, she could not have all her heart's desires, not in the way most children her age could at least.
We tried our best to make it work. Though it was not the picture she had imagined from witnessing so many before her enjoy the simple pleasures of attending elementary school, we did all we could to assure that she was able to have as many of the same experiences as possible. There were still some unavoidable differences; she got dropped off and picked up each morning/afternoon curbside so that we could carefully unload her wheelchair to be sure she had the energy to make it through the day, we had to hire a private nurse to attend with her so that she could manage her vast medical equipment and health care needs, her backpack contained more medical supplies than books, and countless other subtle to large differences that set her apart from the typical kindergartener. Even with a special plan in place to help our daughter succeed educationally despite the effects of her mitochondrial disease, our local elementary school only had the pleasure of knowing our daughter for two months before those options were no longer enough to maintain proper education in a safe environment for her. She simply became too sick to attend school.
There were a lot of days in the beginning that made the choice we came to even harder to accept. When too many days would pass where I did not have her next to me wide eyed and ready to learn it made me feel like I was failing her in some way. Though I knew that it was her body that was failing to support her and not me, I often lacked the courage to assure myself I was good enough to make it work. I eventually realized that was my main fear when it came to the decision of homeschooling all along; feeling solely responsible for the possible downfall or success of our daughter's education. We would no longer be the supportive educational role, but the single players in such an important part of our daughter's life, and while that might be some family's reason for choosing to homeschool, that was the one thing that was keeping me from being able to fully embracing it, fear.
Our little girl is now in third grade. The decision we made, with the gentle guidance of our daughter's physicians, to teach her at home was one of the hardest we have had to make for her. What has made it easier over the years is seeing all of the; educational, physical, and emotional benefits unfold for her as a result of it. She has made academic progress we were unable to attain while she was simply too exhausted in a classroom setting with teachers who were unable to give her that one on one attention she needed to learn. While I had no original desires to become a teacher, I had to, for her. It has been both an exhausting and very rewarding journey to say the least.
I will admit there are days when I still grieve over what feels, at times, like the loss of a dream. The ebbs and flows of emotion are like waves upon the shore; sometimes silent and gentle, other times roaring loudly and knocking me clear off of my feet. It often comes on strongest when she is too sick to homeschool. She will sleep the day away curled up in a ball; her curriculum opened and ready, untouched on my desktop. I never know what kind of day it will be, always hopeful we will be able to complete another necessary day of learning. There are days where I find myself reading chapter books out loud from the foot of her bed, stroking her delicate skin, hoping that maybe, just maybe she can hear my words and process even the smallest bit from her much needed sleep. Sometimes I question if I am really doing that for her, or for my own reassurance that we are doing all we can.
Today as I sat there again at the foot of her bed, reading chapters to her softly drawn eyelids I paused a moment just to take her in. Before I could even begin to start questioning myself, or our choices I gave her hand a gentle squeeze. I know we are doing the best we can, and I know we are doing right by her. The little girl who struggled to recognize the letters in her own name, can now read, she can write, and though she had the unfortunate circumstance of inheriting her grandmother's math phobia, I know we will get through that together too. When you look at where we came from and where we are now I know we are already responsible for her success, together.