When I speak in conversations about my medically complex kid the listener's eye automatically drifts to the little girl in a ponytail and wheelchair at my side and nods knowingly.
What they fail to identify is the young boy running around and hanging upside down.
Sure, I'll give Cary Lynn her due. She's not easy. But even with her rarer diagnosis of Diabetes Inspidus and Dysautonomia, we are still able to treat her and keep her comfortable most days. I have meds from here to Timbucktoo that we give her, but they work.
Last week I took my son to our Developmental Ped. I adore her. She's thorough, spends hours with you, and really hears what you have to say. This was Marvin's first visit to her but because he's seen her in action with CL he was good to go.
She spent three hours with us. In that three hours she uncovered a few more issues that we will see more Dr.s about. Sigh...... But when you are trying to put the pieces of a unique puzzle together you do what it takes.
The one thing she was concerned about was Marvin's migraines. He's had really bad ones on a regular basis. Her words were, "I know you said you really aren't wanting more medication, but I have one that is tolerated very well. I think you may want to think about trying it to see if we can help him feel better."
Ahhhh, my Achilles' heel! When we have our children all we want to do is protect them. Watching them hurt or suffer makes a mom feel helpless and miserable. Bottom line we just don't want our kids to hurt and will move mountains to make it stop.
"I don't know", I murmured, "he just doesn't do well with medication. We've had so many side effects." But I was wavering. I wanted something, just this once, to work. Marvin was already starting to rub his head, a telltale sign.
"Tell you what, you can half the dose!" With those words, fate was sealed and I took the prescription home. Half a dose may work OK. I won't know unless we try, right?
Wrong!! Marvin took the dose before bed as directed. The next morning I waited for him to get up at his normal time. No sound. I sat down in a weirdly quiet kitchen and sipped my tea trying to ignore the tendrils of fear that were starting to rise in my head. I sat down at the table stubbornly. I scolded myself. Why can't I stop worrying?! This is ridiculous! You are a grown woman, behave!!!
That lasted about 5 minutes. I decided just to peek in and see what was going on. When I came in the dog started making her "Timmy is in the well noises". When she makes that sound I pay attention. I came over to the bed. Marvin was pale and glassy. "I don't feel good mama. My chest hurts." With an elevated pulse I started making calls fast. Shannon came in and sat with Marvin. My world was shaken once again.
Shannon took Marvin to the Drs right away. I got Cary Lynn's supplies and followed behind. I remember making a call to my mother-in-law and a friend, but don't remember much else. Except crying.
We were lucky. Not that this is a huge shock, but Marvin is allergic to this medication as well. It caused a rare side effect. His heart was skipping beats. So he's not able to take this or any medication that falls in this class. After a quiet weekend and lots of resting, legos, and good books most of the med seems to be out of his system and he's back to his normal self.
I don't think I am though. It seems like I eternally hope for a magic bullet. Something that can help him feel better, reduce pain, and bring world peace. Not too much to ask for, right? But after this go around I realized that I may need to start thinking a little more outside the box.
There is no magic bullet. Marvin is unique. His therapists describe him as a unique exception to the rules of his disabilities. His Drs describe him as unique. While I'm always good with marching to our own rhythms, just once it would be great if he were an average joe in one department. But since Marvin isn't going to change, I'm the one who has to. I'm going to have to step out of the bounds and find different ways to work with what is going on. To find a unique way to handle the unique situation we are in.
What I do know is that Marvin is resilient. His ability to bounce back from the situations life throws at him make him a tough cookie. We will figure this one out and together we will move that mountain.