Evidence of my long absence from this space is the fact that I had to reset my password because I couldn't remember it.
Our girl is growing up. She'll be 14 in October. She is both healthier and happier than she should be, something I try to remember.
I tell the truth in this blog not because I want sympathy, but because it is healing for me to tell our story, and I hope healing for others to read it.
These past few days have been sad. Nothing extraordinary, but we've passed a milestone where Wills and Eliza are really easy. We've been there a little while, but my hands are so full with Virginia, I hadn't noticed. They can stay up late, appreciate a nice meal, and endure a long day with grace.
Yet the part of my life that is broken and hard remains.
I need something different in my life than caring for Virginia, but that feels painful. Why does my life get to move on, and maintain a richness and variety that is impossible in hers?
It is only the millionth time I've had this thought, but if only I could trade places with her.
These past few days have been average summer days, but Virginia has been left out. Wills and Eliza had a tennis lesson yesterday morning, we ran some errands, they worked on school packets, and then they went to the pool with friends and stayed for dinner. Virginia only left our den for diaper changes.
Disability is isolating.
You see (well, if you are my instagram follower, you see) the pictures of Virginia in a pool, a canoe, or on a bike, but what you don't see is the effort it takes for Findley and me to safely create that situation. It takes a lot. There are exceptions, but her experience usually lasts 45 minutes to an hour, and then it's back to her routine, because that's all we can do. That's as long as she can handle the elements, or as long as I can hold her, or as long as we have until it's time to start her next feeding, change her diaper, or give her next round of medications.
The experiences feel staged because we essentially get everything ready, and then place her into them. There is not a natural unfolding of an activity she loves, because she is physically bound to us, and where we take her, and what we set up for her. That is not to say that the emotions are staged. Her love, joy, and laughter are about as pure a glimpse into a soul as we ever get on earth. I just wish we could lose the limitations.
We don't give her these experiences and include her in as much as is humanly possible because we feel guilty leaving her behind, although of course we do. We do it because we love her, and she is a joy to be with. Every time I walk out that door without her, it stings. She understands her own limitations, I know she does, and she forgives, but it still stings.
We have an amazing new teacher, Monica, who comes on Mondays and Fridays for five hours. Mrs. Doris is here four days a week, helping to change diapers, keeping her while I am a mother to my other two. My parents are in and out all week long. My point is, I am not opposed to help, and lots of it, but this is hard.
Virginia and I are incredibly lucky because lots of people love us, and love us well. I know why she is so happy...she has never been alone in her tears, never been left out, never been made to feel like anything but the blessing that she is. And I'm going to take a lot of credit for that, I am. I may have driven a lot of people crazy (and be on the verge on making myself that way, too) in my demand for perfection for Virginia, but that's my job.
Today is one of those days when I feel the enormity of her loss and it is heartbreaking. I will put it aside because there is no other option, but I am crushed.