I am, you may have noticed, an upbeat kind of person. I’m totally in love with my son and want everyone to love him just as much. That absolutely influences how I view, and consequently how I write about, our lives.
I try to share the good, the bad and the ugly…I try to go for balance but I acknowledge that the slant is more toward the good. Mostly because my life is slanted towards the good and partly because I’m just that damned determined to make it good.
So. It comes as a pretty rude wake up call when I find myself sitting in my office chair with an aching back. A back that is aching as a result of a very public wrestling match with my 71 lb, 4 foot something or other, 8 year old. He’s good, he’s so, so good and yet I needed him to do something last night that was way, way, way outside his comfort zone.
The more flustered I got, the worse the situation got…remember, I am still learning to listen too and sometimes I suck at it. Finally, I looked at my flushed faced, teary eyed cherub and glared at him. “TIME OUT. SIT.” He sank to the floor on his knees and it was over. He looked at me several times, with those big, big eyes that I love so much, and I just shook my head. Once he had regained some composure I gave him two options. He could stay in time out until Daddy was done or he could go into the voting booth with me. He chose the booth, we finished voting and he helped put my ballot into the voting machine-thingy and we went home.
It’s times like that when it is so very clear how much anxiety has a grip on him. I am in awe of the inner strength of this child who on a daily basis not only fights this battle but most often wins.
Today, we’re all better. He’s happy at school and though my back hurts it’s serving as a reminder that there is a beast who lives inside my son and makes his days so terribly hard. It’s serving as a reminder of why we are so focused on better treatments and ultimately a cure.
Please, please, please let us be on the placebo because such a sweet boy shouldn’t have to keep fighting this hard.
Tears in my eyes. So familiar with this scenario from my (FX) son’s childhood. Please know my heart is with you all – Monkey, you, your husband and other family members. We have considered the drug trials at least once before. We will consider again (and hopefully say YES) in the future. Biggest hugs and lots of love!!!
Thank you Kelly! There are definitely more trials on the way, I hope you find one that works for you!