I’ve been sad. Really sad. What’s the point in sugar coating it. It’s interesting, because I didn’t really start blogging until after we were really seeing progress in Ashlynn’s speech. I was able to be upbeat and positive in most of my posts. Sure there were some sad ones, or some angry ones, or some worried ones, but for the most part, I was feeling and had been until recently, pretty optimistic.
I can assure you though, I had very, very, VERY dark and sad days. Days I felt the worry would consume me. Days I felt the guilt and the weight would be too heavy and I would have to admit I didn’t do enough. I didn’t help her enough, and then I would be upset about this potential future outcome and obsess over what I could do more to help her. It’s a vicious cycle I tell you.
Ashlynn has now overcome my greatest fear. She can speak. She will be an intelligible speaker and she will be a verbal communicator. She will probably be slower. She will probably have continued word finding issues, but she will speak. For so long when she wasn’t speaking, I would imagine a hill. At the top the hill, was the trophy, which was intelligible, verbal, communication. As she failed to gain speech, I felt like each day had us slipping further down the hill. I was desperate and worried. How would we ever catch up? At least if we were climbing the hill, I have hope. However, it felt we were grasping yet slipping, and then stumbling even further back….and that feeling friends, is probably one of the worst feelings you can feel as a parent.
I haven’t faced “the hill” in awhile. I mean I have, but at least not in a negative way. We have been steadily climbing the hill. We have been getting closer and closer to the top. In fact, in regard to speech, we reached the top. Language is still an issue, but we are closing in. I see the prize.
Then came school…more specifically, reading. Writing. I found us on a new hill, and on this hill, we are very, very far down. Through Kinder, though I felt we weren’t necessarily closing the gap, it also didn’t feel like we were tumbling backwards either.
Enter 1st grade. Commence tumbling. Commence somersaulting. Down. Down. Down we went. The pace of the classroom curriculum is VERY fast. Too fast. We need about 1000x more repetitions than the typical peer, and honestly, there just isn’t that many hours in a day. I have had to face some very, VERY uncomfortable, okay painful truths, with the main one being this:
Ashlynn is going to have to live with some degree of disability for her entire life.
Call me delusional, but I really thought I could fix this. I really thought I could expert in this and get her all the help…and the RIGHT help she needed and we would overcome this, and by overcome, I mean soon. Like, really soon.
It has been very, very, very painful to realize this isn’t going to happen on my timetable.
My husband has told me before he feels he has a better understanding of Ashlynn’s reality than me. I would scoff. Impossible. He doesn’t know anything. (love you babe). I’m the expert in this. I am NOT in denial. I know the problems and we’re going to attack and beat them.
Well, I think this year has been revealing to me what my husband knew all along. I have been in denial.
I should have known. I mean, afterall, I’m the mom who when filling out a disability state park pass to get a discounted rate, actually felt guilty about it telling myself that even though Ashlynn will grow out of it, if the state approved it I wasn’t cheating.
Hah! I actually felt like I was cheating when filling out a state disability pass and I didn’t think I was in denial?
Can I shake my head anymore?? It’s an approved disability because Ashlynn HAS a disability.
UGH
Do I need to write that in black and white to sink in? It should be obvious by now. I can’t fix this. No matter how many continuing education credits or certifications I get, I can’t fix this. A wise woman who has walked this road before me, had a “hard” conversation with me recently (which I appreciated). However, it went something to the effect of how she wasn’t sure I was truly accepting Ashlynn for who she is, and if I don’t, how that could truly be to her detriment.
Deep breath. Breathe in…..breathe out.
Everything I do is for her benefit. Could I truly be behaving in a manner that was to her detriment?
I have realized that I have. I need to realize there is another hill we are yet again tumbling down, and after we reach the top, there will be yet another hill quite possibly that we will be facing, and at first falling backward on.
As I type that though, I think of life in general. My life without a disability. The hill metaphor is still relevant. Life is not a ride on smooth waters. Life always throws a wave, a dip, or a hill in the way, regardless. Though I would trade places with Ashlynn in a second, perhaps she is learning early what some adults may spend their entire life trying to learn.
A life worth living is about struggles, because without struggles you could never feel triumph.
A life worth living is about sadness, because without sadness, you could never truly feel happiness.
A life worth living is about defeat, because without defeat, you could never truly feel success.
A young man with apraxia in the UK, Mikey from Mikey’s Wish, reminded me recently that learning issues Ashlynn will have to tackle herself, but the greatest gift I can give her is just my support.
It doesn’t seem like enough, but I don’t think I can “fix” her anymore. I can though, hold her hand and squeeze it when she’s sad or when it’s hard. I can’t take away her disability, but I will walk through every fire with her to overcome it.
I still feel like we are tumbling down another hill, and though I can’t promise her I can carry her to the top, I can at least promise I will hold her hand and die trying to get there
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