On Monday Riley had his annual pediatric check up. He did really well. He is always so cooperative and pleasant. This year, we opted to give him a flu shot. Yes, it's controversial. However, caring for a sick child with multiple disabilities is one of the saddest and most difficult experiences a person may ever encounter. Trust me on this. I've done it and I don't like putting Riley or any of the family through it if it can be helped. A sick typically developing child may be challenging but it is nothing compared to going through it with special needs.
Our pediatrician is wonderful. One thing we always cover is the well-being of Riley's parents - yep, that's John and I. We ride an emotional roller coaster. This is another on-going subject that I have been avoiding. Admittedly, we are challenged by our role in life and being 9 years behind. I do not actually care to delve into this today - in fact, I am unsure when I care to get into this. For now, let's leave it at the fact that being a Special Needs Family is not particularly easy. The conversation went on that some do handle it and some do not - it seems to be some individual parents are stronger than others. I object. I believe that it is far more than simply can you handle special needs or not...
The special needs community frequently uses the phrase "a bullet is a bullet." Really, I do not think all bullets strike the same. When your child can get him or herself to the table eat unaided, I do not believe the bullet did the same damage as all the others. Fine, object with me. This is my observation and this is how I feel. Perhaps all bullets are not created equally.
A few hours after a good report with Pediatrician, Riley came down with a flu. As usual, joke is on us. It has been a rough couple days. Riding Monday evening had to be cut short as he began to whine as he was jostled around. I happened to be side-walking with another girl in the class as I happened to be a little taller to be alongside her horse and the other available volunteer could reach Riley: my very first direct experience with any other special needs rider. This was another surprise to me. The rider also had multiple disabilities, and she was considerably older and large than Riley. I had to mentally brace myself for the next half hour of hard work. To my great surprise, she sat up herself and held her reigns. I was simply there for safety. No leaning on me. No sneezing on me. No pushing arms and elbows into place for proper weight-bearing. This was unbelievably easy. Could I possibly say to her family, "Wow, she's easy to work with!" Somehow, I doubt they would agree. Could they possibly know that I found side-walking with their child to be a breeze?
Oh dear, that paragraph got all sidetracked! Where was I going with that? Riley was sick. And was he sick. I was replaced as a side-walker to remove Riley from the ring. Gathered up my people: my Mom, Ronan and neighbor Annie who now volunteers helping to groom and tack while earning her high school community service hours. Then on home we went. Riley and I were up and down throughout the night to keep his fever under control and attempt to stop the incredible leg tremors - oh, I know I've talked about tremors here and there in this blog - I better tag them because they're important. When we weren't under the fan we were in my bed, my arms wrapped around him reaching on each side to pull up on the toes of both feet in an attempt to calm the tremors, but unfortunately adding my heat to his in the process. Any wonder why some parents keep their special needs children apart from the rest of us... illness is truly horrible and this wasn't even a particularly bad event.
A rare event: Riley napping, and alone in his bed yet.
This has happened perhaps five times at the most in his lifetime.
Couple of posts to share today...
A post on respite for families - it's a lifesaver, I promise: Respite: An Interval of Rest by Special Needs Ministry.
To my great relief I am not the only parent deserving of the title - Mother's from Hell.
There was more to say, but my time is up. At 3:30 pm my day is done as the end of the school day has arrived. Well, I hope there aren't too many typo's and such, because this is a blog and I'm moving on with my day.
We are all special... I think... though I complain and want to compare bullets with you... by Stacie Wiesenbaugh