Life truly is about your perspective. Last week I was reading a husband's account of his wife's two year long battle with cancer. What constituted a good day toward the end of her life was being able to swallow a few bites of ice cream and perhaps have the energy to walk around the house, clearly devastating compared to a good day before cancer. The husband appreciated these small victories, and he was living with very short term goals in mind. He put everything else on hold in his life to give her the most enjoyment she could have in the midst of her illness.
It struck me that this is very much how we live with Virginia. She is not dying, but taking care of her demands an incredible amount of energy, time and sacrifice, and there is no way to predict what each day will bring. Our days revolve around keeping her comfortable and, frankly, alive!
I am a perfectionist, trying to find the best solution(s) for a problem that has no true resolution. I waste a lot of mental energy thinking about why certain aspects of this are so hard and what I can do to alleviate the stress. The answer is, not a whole lot.
We all have a finite amount of energy, and when Virginia's not sleeping well or in a lot of pain, I have to be willing to let a lot of things go. As Findley so kindly pointed out to me the other day, Wills and Eliza don't know if I will be in the kitchen fixing their breakfast at 6:45 am or if they are going to be waking me up at 7:30, hesitantly asking for a ride to school. I am sure this is not the ideal situation, but as long as we acknowledge it, laugh about it, and love them, they will turn out okay.
Virginia is unusual because her physical injuries are severe, yet her mind is sharp. She wants to be a part of things, and she truly loves an outing or adventure more than the rest of us. We have to find a balance between leaving her behind when there are things she simply can't do, and finding activities she will enjoy that aren't a drag to the other kids. Unfortunately, balance is not my strongest trait, and leaving her behind never gets easier.
I had the privilege of meeting a little boy a few weeks ago who has a severe disease that doctors have been unable to diagnose. He is in a wheelchair, on a ventilator, has seizures, scoliosis, and many other health concerns. He is precious and his smile literally melted my heart. His mother, who happens to be an MD, has full-time nursing care for him because he is that fragile. The mother is calm, kind, empathetic, and completely infatuated with her child, but has had to give up some of the care because he needs ICU type nursing, twenty-four hours a day.
We have not been forced to give up control of Virginia's care to anyone because she is healthy enough that it has been possible for us to keep it up. We have help with the house, or someone who comes in to entertain Virginia or take her on an outing, but we still do most of the hardest tasks ourselves. I am wondering if this mother of the little boy just has a different, more laid back personality than mine, (or has found a medication I need to know about!), or if giving up control has enabled her to relax a little bit.
Last Monday, I feel backwards with Virginia while climbing out of the pool. My legs just gave out, and we both literally went backward into the water. The good thing is I found out that she will hold her breath! It felt like 30 seconds that we were under water, but it was probably more like 3! As we were going backwards, I saw my sister-in-law leaping over a lounge chair to try to catch us, and that image (as well as locking eyes with V under water!) is permanently burned in my brain. It scared me to death, and made me realize that we are on the edge of having to change how we do everything.
There is not a lift that would work for Virginia because of how she arches her back and has such fluctuation in her tone. So Findley and I (who collectively hate lifting weights more than any other couple I know) are going to have to start working out, or I'm going to have to hire some huge man to just follow me around all the time.
Technology has made certain tasks simpler and faster, so we all just cram more things into our day. The blessing of Virginia is that she cannot be rushed, and we are all (fortunately) forced to match her pace. The best thing I can do for Wills and Eliza is to teach them to slow down and enjoy the people around them. Unfortunately I have very little control over how their lives turn out, but hopefully I can equip them with an attitude to weather the storms. If Wills wakes up one day in twenty years with twin Virginias, it will be his faith in God and an army of true friends who will save him, not his forehand or graduate degree.
Here I am, a year out from Virginia's scoliosis surgery, incredibly grateful for how well she did, and also for all the people who have loved us so well over the course of this journey. It is a marathon, and not a sprint, and one in which I have no clue where the finish line lies.
For the sake of all the parents of special needs kids who used to read my blog, I would like to write more. This was incredibly long today, but is a decent picture of where our family is.