It's difficult to explain to some how a simple Saturday can be so monumentally exhausting. What's so difficult about going to the store? What's so hard about dropping off a present for a friend? Going out to lunch is fun! Swimming and playing outside is an ideal way to spend time. It must be nice to be able to go wherever and do whatever, whenever you want, with whomever you want. Right? And to only work Monday through Friday, just 7am-2pm?* Wow. That's awesome!
Big. Fat. WRONG.
We know how fun the store can be. Or WIC. Or the doctor. Or a really fun event at a children's museum. Or Mary Poppins in Chicago.
Let's talk about eating out a restaurant. He doesn't sit still, he doesn't use silverware, he is likely to undress completely underneath the table, and he yells. When they're two, it's expected. When they're four and a half and tall enough to be a full five, people tend to stare. Eating out is work.
Now let's talk about walking from the house to the car, much less playing outside for an extended amount of time, and how he runs into the street with absolute abandon. He's even gotten into the habit of leaving Oma's house all by himself -- just waltzing outside on his own. It is downright scary to have a child with no fear.
Oh, and a friend's house? What if they have a dog and he becomes paralyzed with fear, biting his arm until it bruises? What if there's a meltdown and he breaks something? What if they don't understand? What if?
I am tired of people staring at me. I am tired of chasing him. I am tired of telling him not to climb out of the shopping cart while it's moving. I'm tired of explaining to people that, no, it doesn't hurt him to lay upside-down. I'm tired, too, of the evil stares from people when he smacks me or throws things at me in public.
What they don't understand is that just like it is overwhelming to care for a child with FXS, it is difficult to BE a child with a low IQ, poor language skills, hyperarousal, and ADHD.
I'm tired of living paycheck to paycheck but being too afraid to move on because of how it might affect Punkin. I'm tired of depending on the government for SSI checks and not being able to save a dime, lest it be counted as an asset and we lose support entirely. I am tired of knowing that while I honestly want nothing to do with Punkin's father, he was able to just keep on going with his life despite the decisions he made. He can have more kids who aren't developmentally challenged. He can travel without much thought. He can freely pursue his dreams and wait for the child support unit to catch up with him at tax time.
Today, I am TIRED. And I worry every day about whether or not I am making the right decisions with his medications and therapies and behavior management. I worry about the fact that it took 45 minutes for him to drink 1oz of his Zoloft mixture and swallow one pill that I'm not sure is even helping. I wonder if I'm doing enough; I think of all the things that need to be done -- a picture schedule, a bedtime routine, a sensory diet, introducing new foods, opening him up to new experiences -- and pretty soon my head is swimming.
And then I go check on my precious baby. He's blissfully sleeping with a giraffe, zebra, ducky blanket, pink fleece blanket, and Woody doll. I kiss his cheek and my heart breaks with peace and love. I am sad sometimes when I consider the unknown of the future and all of the things I know my brilliant little guy won't be able to do and the way people may treat him. But overall, I am filled with faith in my God, who continues to provide for us and wrap His loving arms around us. The God who makes all the little miracles possible. And I know everything will be okay. How? Because I've seen it work so many times before. Oh, and it's also because after I take the medicine to help me sleep that God inspired some brilliant scientist to create, the morning will be brighter. Everything's better in the morning.
*We all know that parents work full-time; here I am referring to the work we get paid to do. Just wanted to clear that one up. =)
Note: I have to say that my natural inclination before starting this post was to apologize for this post. It's negative, even a bit whiny and self-serving. And obviously I don't know the difficulties of other people's lives; everyone has issues, as do their children, which can make daily life burdensome. But I don't want to apologize. I'm allowed to have a bad day. So I write.