It's astounding to think that Al's stroke was over three years ago. In many ways, our life has been all about the stroke - who my husband became after the stroke, how our kids handled the stress and the small victories, and who I became because of the stroke. The effects are still rippling through our family, and it still surprises me on almost a daily basis.
I mentioned in my last post (far too long ago) that Al had started a job. He works 12 hours a week at Lansing Community College, doing some programming for the academics department. Subsequently, he enrolled in a class at LCC to help him to learn the programming language. He was an IT guy before, so this is a bit out of his realm of expertise. His brain was also compromised in a major way by the stroke. As I mentioned in my last post, it took about two years too long for him to get back to work, so that is a frustrating factor, but God's timing is still the best.
We still strive to get Al's leg to the point where it's "useable." He had been wearing an AFO that was too big for him for far too long. It had been cast when he still had huge hockey-player calf muscles, but then his muscles atrophied. He has really strong foot-rolling, so his ankle was always pressing against the outer side of the brace and making him walk on the outside of his foot. But no one - PT's and doctors alike - mentioned that it was a problem until late last year. Our physiatrist finally said, "That brace just isn't working." My response was, "Ya think?!" So he prescribed a double-metal upright brace with a shoe built into it. (That was another issue - the old AFO was so huge that we had to buy a size 13 shoe for his left foot and his normal size 9 for his right foot. I used to call him Franken-foot.) The double-metal upright does the trick, but a) it squeaks with every step, b) it doesn't control his ankle enough so that now his knee snaps back violently when he takes a step, and c) it's a shoe, not a boot, and we've had several feet of snow this winter.
It is a serious frustration to be three years out from the stroke and to still not have a well-functioning AFO.
For me, personally, I think I reached a point just before the holidays that I really processed and accepted Al's hemiparesis, thinking of it from his perspective. I cried a lot and felt kind of sick about it, how much it must stink for him to haul around a half-working body all the time. To think his arm will continue to seize up unless he's religious about exercising and electrocuting himself with electrostim. It was the realization that my husband will always suffer that initiated a new wave of grief in me.
And since the holidays, my grief has been more about the fact that my husband and our relationship will never be the same as it was. There are some losses that he suffered that will never be recovered, ones that affect our relationship deeply. I've been through a lot of pondering and deep prayer to figure out what love is supposed to look like when your spouse changes so drastically. I know that my love for him should be a service love, a committed love, a selfless love, an unconditional love.
Man, do I fail at loving my husband if those are the standards!
In many ways, life has become our "new" normal. We are beginning to know how much each other has to give and take in both of our limited capacities. We know how finances have to work to stretch out to the end of each month. We are once again trying to be actual parents to our kids and not just warm bodies in the house.
I'm writing a book. It is a fictional story about a girl who falls in love with a disabled guy. I use a lot of parallels to my life with Al. But it will probably be a long time before I can write about our real experiences because I'm still learning from them, and sometimes they are still too fresh and painful.