It’s Monday we’ve done our blood work and I’m anxiously awaiting the results. Last week was the first week with no steroids, I’m hoping things just level off and we will soon discover what our new normal will be.
While I was writing this the numbers did come in, all is well, we’ve hit a new high for the hemoglobin, 14.9, I sigh with relief yet my mind still wanders to what next Monday will hold.
Yesterday afternoon Austin had a meltdown which makes me sad, it just came out of nowhere. I’m thinking something physical might have been going on in his head or body. I just wish he’d remember if something hurts, if something is wrong, he just needs to tell mom. Later he told me his head hurt, not sure if it was hurting before or hurting because of how hyperaroused he got. I’m 90% sure if I was hyperaroused, unable to regulate myself, in full meltdown mode, my head would hurt afterwards too.
Episodes like this are always followed by extreme remorse, he’ll weep and ask forgiveness and sadly he’ll make a promise that I know he’ll never keep “I won’t do it again”. I know he doesn’t want to ever do it again but it’s not something he can regulate. When he starts to meltdown there are times I can’t redirect it, I just need to let it cycle through, cycle through the rage so we can get to the sorrow. The switch has been flipped and it appears to be on a timer, it has to cycle through.
It’s utterly amazing that through all his illness and all the meds, all the roids, the hospital stays, the treatments at the cancer center for his infusions his behavior was remarkably good. Some things just don’t make sense at all and I have no recourse but to be thankful and feel blessed that he did so well.
Last night I had the strangest dream. Fragile X and autism can be challenging enough and it ticks me off that it woke me up feeling like I was having a panic attack in the middle of the night
In the dream I was in a auditorium having to pass in front of a few people. There was a family with a couple of young men with them who had special needs and when I passed in front of the one they grabbed the tendon behind my knee and was twisting it. I looked at them and said “Please don’t hurt me”, they let go. I gently stroked his face and told them it was okay.
That’s not what bothered me, what broke my heart was the look on the parents face, a look of hopelessness, a look of sorrow and all I wanted to do was comfort them, to take away their sorrow. To let them know I wasn’t upset with them that I understood, that I have walked in their shoes.
At that point I awoke to a pounding heart, my pulse was racing and I was filled with terror. Why? Because in reality, behind closed doors that family exists, I know it, I feel it, I’ve lived it and it saddens me that I can’t make it go away. It wasn’t the action of the young man because I realize that they were not in control, what broke my heart was the look on the parents face.
There are things in life we have no control over and there are people who may never get it. It wasn’t just the hopelessness and sorrow that touched me, it was the look of understanding and compassion in their eyes that broke me down. The sense of relief that somebody understands, somebody cares, that others would not pass judgment.
Last night as I laid there I was angry that my dreams were modeling the part of life I’d like to lay to rest, I’d like to not focus on. Really in my waking hours of the day it’s challenging enough on some days to deal with fragile X and autism, I don’t need to deal with it in my dreams. I want dreams of a calming ocean, I want dreams of flowers, sunshine, friendship and love. If my dreams aren’t going to deliver it I guess it’s critical that I do find it during the course of my day. And with that, I told this tale to the girls this morning and we laughed, that even in my sleep sometimes fragile X and autism really ticks me off, fires me up.
And just maybe I had that dream to remind me to share with others, to let them know I do understand, I have walked in your shoes and no matter what, we are not failures. No matter how battered, physically or emotionally we are at times, we still go on no matter what, we never lose sight of the calming ocean, the flowers, our friends or the sunshine.
“Courage isn't having the strength to go on - it is going on when you don't have strength." ~ Napoleon Bonaparte
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