I have some heart funkiness. No one knows exactly what is ‘wrong’ – but when it’s misbehaving it’s quite irritating.
Last night it was acting up. Last night was frustrating.
Normally, it doesn’t bother me much. But, last night it did.
Probably because I had just read an entry from Autism Hippie. In the post she refers to her son (now legally an adult) being approved for Social Security Supplemental Income. He will receive $710/month to meet his basic needs. She went on to write about her (and his) reality. During this graduation ‘season’ she was not posting about college acceptance letters, but instead about a life of poverty and reliance on governmental assistance.
All for her son, Michael. For the boy she gave birth to – the boy she loves with all of her heart. I cannot imagine ‘where’ she is in this thought process. Having the true recognition that someone you love more than life itself will live the rest of their life in poverty-through no fault of their own. Tucker is not like her son Michael. Tucker *should* be able to go to college, to work regularly, to live alone…but there was something else in that post.
As I read her posting I came to this phrase, ” It is about hating that they will outlive us.”
I stopped reading. I couldn’t go any further. I knew just what she meant.
The older we get, the more we recognize our own mortality. I know, I’m only 39 – but 39 with a couple of kids, one of whom has some special stuff going on, adds a unique stress-inducing thought-process.
The thought of our children outliving us.
I’m caught in a strange place. Parents should never have to bury their children – EVER. Yet, many parents are plagued with worry about what happens to their child after our own eventual death.
As I sat last night with my heart thumping I couldn’t help but think about life…about both of my children…about not having had enough time with my husband. In a way it brings you so much into the moment. So thankful for all of the beautiful things that surround you. Things not as in homes and cars…the things are the wet nose of a dog, Tucker’s kiss on my forehead, Estelle reaching for my hand, Alex asking for help, and my husband just looking at me like he does. Those are the most beautiful things in life. I knew I was ‘fine’ – but when you can physically feel your heart stop, skip, pause, and then begin again it takes you to a very real place of reflection.
And then…I put Tucker to bed. As I pulled the blankets up to his neck my heart thumped. I looked at his sleepy face…which still resembles his much younger face.
I thought to myself….
Who would understand him in the moments that when he seems ‘ununderstandable’ (nice made up word by me)?
Who would help him in the moments he is overwhelmed?
Who would explain the process of getting a job?
Who would advocate for him at school?
Who would ‘trick’ him into pushing his boundaries?
Who would hold his hand in a store or going into a cave?
It’s not that I think I’m irreplaceable, although I realize this post reads as such…it’s just there is something about our relationship. It’s a different bond. Not better, just different.
I know that I can understand him in every moment.
I know I help him come down from too much sensory input.
I know I help explain the world in a way that makes sense to him.
I know the ‘language’ of the school and what he needs.
I know how to trick him into taking chances.
I know he’s not afraid to reach for me.
As I laid in bed last night I prayed a different type of prayer. The prayer was a plea…a plea to give me enough time to help him to adulthood. Not that we stop needing our parents then, but I know he would be well-equipped to deal with most of life. I don’t know that Autism Hippie is the praying kind…but I prayed for her and her son Michael last night. I prayed that someone would always watch over him.
As you say your prayers tonight (if you are the praying kind) do me a favor. Pray for the most vulnerable parts of our populations…for those with no one to specifically care and advocate for them. One day…that could be your loved one.