Tiptoe In
By Cathy Jameson
A few times during the day I forget about all the special needs stuff that has filled much of my life these last two decades. That happens when I’m busy at work, or when I’m concentrating on other real-life things at home, like bills. During those moments when I have to concentrate on other things, someone else is with Ronan. I get the chance to physically attend to whatever is right in front of me and mentally ‘walk away’ from some of my thoughts when he’s with someone else. I got to do that last week when I jetted away to the west coast for a few days to visit family.
I didn’t worry at all about Ronan while I was gone.
I didn’t stress about what he was doing or what he wasn’t doing.
I didn’t overthink decisions that I usually have to make for him.
Knowing he was happy back home, I didn’t let other thoughts, like diapering and GI distress, interrupt what I was doing like what tends to happen when I’m back home. Back home, Ronan was safe. He was in good hands. Because of that, I relaxed. That meant sleeping in late, eating a full meal in one sitting, talking til wee hours of the morning, and going out whenever I wanted. It was a luxury, and I am grateful for every minute Ronan was cared for so that I could walk away.
I’ve been able to take little vacations before, but scheduling those can be a nightmare. The stress of that will sometimes have me second guessing a trip. But, with careful thought, because it really does take some serious and careful planning, most of those trips have been successful. I may come back exhausted, but it’s been worth the refreshing few days away.
While flying back very late Friday night, I made a mental list of things I’d need to do that weekend and for the week ahead. I had quite a bit to sort out, work out, and figure out. I got a few hours of sleep after tiptoeing into the house at 1:30am praying Ronan would sleep in. He did not. He was up at 6am. Then, out of the blue, when I sat down next to Ronan for breakfast early on Saturday morning did he have a seizure. He hasn’t had one in quite awhile, and for a second, it didn’t even register with me that it was a seizure. I truly thought I’d just startled him, but this was one of the seizures that cause a ‘revival’ type reflex – his arms go up like he’s doing a praise the Lord kind of gesture. His eyes flutter just the tiniest bit, then his body settles. Dear Lord, that was not a startle, I thought. It’s a dang seizure!
Everything I wanted to do the rest of the day got put on hold.
Everything I thought was important was insignificant.
The only thing that mattered now was Ronan.
He would be fine immediately afterward, but the worry I’d put on hold for a few days immediately returned. Memories of past seizures, of incompetent doctors, of scared siblings and of decisions that came with regrets came rushing back. I was tired from my cross-country trip and the middle of the night arrival back home, but it was go time for Ronan all over again. That meant rethinking my weekend plans. It meant whatever I thought I was going to get done before Monday might not be getting done.
It meant that all things Ronan would be my first and my only thought.
With the help of family and caregivers, I was able to get all things done. Ronan, as usual, bounced back and had a really good weekend. When Monday came around, he made it known that he really needed me, too. Normally we see him signing Daddy-Daddy-Daddy. This week, when I went back to work, he signed Mommy-Mommy-Mommy. I work part-time and feel like I’m back home almost as quickly as I left. It must have felt the opposite for him because he signed Mommy-Mommy-Mommy several times on Monday, on Tuesday and again on Wednesday as he saw me drive away. It wasn’t what I expected to happen, but when his little sister got sick and stayed home at the end of the week, so did I get to stay home also. She got much needed Mommy time, and so did Ronan as well.
Every now and then I get to tiptoe out of the house, out of the busy-ness, out of some of the chaos that is life. When I get to tiptoe in in the middle of the night like I did last week after a very restful few days away, I’m absolutely okay with jumping very quickly right back into things. I do that for Ronan, and I’d do that for all of my children.
Cathy Jameson is a Contributing Editor for Age of Autism.
###
Denial: How Refusing to Face the Facts about Our Autism Epidemic Hurts Children, Families, and Our Future
By Dan Olmsted and Mark Blaxill
Skyhorse Publishing
Even as the autism rate soars and the cost to our nation climbs well into the billions, a dangerous new idea is taking hold: There simply is no autism epidemic.
The question is stark: Is autism ancient, a genetic variation that demands acceptance and celebration? Or is it new and disabling, triggered by something in the environment that is damaging more children every day?
Thank you for the real life post as always. Our injured sick children can consume our thoughts and hearts. For us this was so true the first years after the symptoms appeared. Thank you for giving a real life perspective of what many families dealing with real life autism go through.
Blessings to all,
G. Martinez
Posted by: Gerardo Martinez | April 14, 2024 at 01:34 PM