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.
I borrowed this topic from Autism with a Side of Fries
Things you never thought you’d say! Proving that normal is indeed relative!
“You can only take ONE (ventriloquist) dummy to the grocery store!”
“Rachel stop telling people Mommy drinks all day!!” (I DO NOT LOL!!!)
“Stop cutting up all your jammies and taping them onto your dummies!”
“Did you just use an entire bottle of Ranch Dressing on your spaghetti??”
What things have you heard yourself say? 😉
Rachel: “I have soap in my hair.”
Me: “Why didn’t you wash it out??”
Rachel: “Mom, I TRIED that.”
Some eye-rolling at how clearly dumb Mom is LOL 😉
Oh it is definitely not all fun and games. I spend life (now) recognizing the positives of having such a special and blessed child. I write because I want to acknowledge them, I don’t want to lose sight of them when the going gets rough, and I so want others to know the wonderfulness that can be enjoyed in any life. However…
There is no getting around the fact that everything is not going to be sunshine and lollipops, no matter how hard you pray! This, of course, is not only true for parents with a special needs child, and/or a child on the spectrum. It’s true for every parent with a child or a teen or even a young adult who tests their ability to stay sane and remain a rational human being while being forced to deal with irrational and unreasonable circumstances, almost on a daily basis.
Today is the third day of school for the year. I was hoping for more than one day of getting up and getting ready for the bus on time with minimal resistance and screaming. I prayed and prayed. But that’s all I got. One day.
Now the superhuman must come out again! If I can find her inside! Parents like us spend day after day being ignored, screamed at, and using our superhuman abilities to dodge flying objects and stay calm when our heads and stomachs just want to explode. We don’t lose it when the smile and the wake-up tickle bug are greeted with a kick or a flying arm to the face. We don’t lose it when we have to beg over and over again for fifteen years, please, brush your teeth and put deodorant on, or when they use our toothbrush no matter how many times we tell them not to, and have to get the toothpaste out of the clothes you just put on them, again. We stay calm even though we know the bus is coming down the street but they have NO sense of time or immediacy, and we just want to scream “UNDERSTAND! YOU HAVE TO BE READY FOR THE BUS, THE BUS DOESN’T HAVE TO WAIT FOR YOU!”
But they don’t understand. They don’t care. Everything is left up to you. Everything. Always. People expect us to just be able handle what we have to handle because the situation was given to us. And for the most part we do. They don’t realize that we are superhuman. Not only do we have use our powers to stay sane in the face of behaviors and worries others will never have to deal with, but it is a thankless and unrecognized achievement. Sometimes (a lot of times, I think) our spouses don’t even realize how superhuman we have to be to hold everything together.
Why do we do it then? Because we love our children, more than life and sanity. And because that one hug or smile or new achievement they’ve conquered that day make it all tolerable and worth it until the next time!
Life changes-Rachel started her senior year today, my son went off to college, my eldest daughter got her first full-time job and is looking to move out of Mom’s, worried about the husband’s job and wanting to move down south-I can’t afford shopping therapy so I did the rational thing. I dyed my hair the brightest burgundy-red color I could find and ate brownies for breakfast! Wonder what tomorrow’s plan will be!
Does anyone else feel a little embarrassed watching the VMAs or am I just old and alone on this? After seeing all the mostly naked people on tv, I’m thinking we should all just start walking around naked, then maybe it would be cool and sexy and exciting to wear clothes and be the slightest bit modest and dignified again….Thank God my children are grown! Really, society?
Yes I’m old now