You always worry that your kids aren’t taking you seriously, especially on the serious stuff. Especially when they’re teenagers.
Rachel is my middle child. I always worked as long I could during her periods of being relatively seizure-free. My eldest got her off the bus and babysat when we needed her. When she went off to college, my youngest took over. I’m sure it made them resentful at times, but they never complained.
Now, my son has gone off to college. While taking down his loft bed, I found a paper with a personalized seizure drill on it, what to do if his sister had a seizure while he was home alone with her. He had kept it above his head where he always sat at his desk for more than three years. He had nightmares about her seizures when he was small, and he told me that watching her have a big one was the scariest thing he had ever seen. But there he was, ready to deal with it anytime he had to. Can you say brave and mature and responsible?
It probably should not have made me as sentimental and proud as it did, but it brought back a flood of memories – everything my other children have done and given up and gone without for the sake of our special needs family.
Don’t get me wrong, my kids didn’t have a bad life, or go without the necessities. But there were no “extras.” No sleepovers, no big birthday parties with a houseful of classmates, no sports, no long family vacations, no closets full of brand new clothes, no friends always playing at the house, moving more than once for stressful reasons that could have torn other families apart, etc. etc. etc. But I made sure they had extended family they could trust and talk to and who would take them places and give them experiences I couldn’t, when so much of our lives were spent in crisis mode over Rachel.
And they both have had opportunities many kids don’t. My eldest has a Master’s degree already, and my youngest went to private school and just went off to a wonderful college on a full scholarship. That wasn’t because I gave them those opportunities though. It was because through everything else that going on, they accepted that the responsibility of getting an education and working for scholarships would fall on their shoulders, and boy did they ever work to be where they are today!
I guess the details aren’t as important as the recognition of how much our special one’s siblings contribute to the family. They take on responsibilities that most kids will never even know exist. Sometimes I think there are some adults that would never have taken on responsibilities and sacrifices like that.
I know they didn’t like it at times, but, like I said, they never complained. They never made our lives harder or more stressful. They helped more than any children would be expected to in a “typical” family. They defended their sister and made people more aware of autism and epilepsy.
I don’t know how to write this post, because there is so much to say and thank them for that I’m afraid I may not have gotten the point of the magnitude of their worth to our family, or my gratitude, across.
In the days before my son left for school, he said to me, “I want you to know that I’m going to take care of Rachel when I’m older. I know I have my issues with her, but I don’t want you to worry. She is my flesh and blood and I will always take care of her.”
For everyone who thinks we live in a state of a bad situation, just look at how many beautiful, good people are created because of it.
Normal is Relative-Autism & Epilepsy Mom 