Mighty and the Bean

I thought that 2015 was tough and that for some odd reason the turn of the calendar would mean blue skies; that perhaps if I wrote about it and buttoned up in a neat blog post with cute pictures of the kids, the present challenges before us would peacefully conclude like the ending of a TV episode. Well that couldn’t be further from the truth. The turmoil and frustration that plagued us throughout the fall and winter have tip toed behind us into spring and here we are in yet another anxiety layered season.

Our ferociously smart, intense, “spirited” daughter is still struggling with immense worry. The objects of her fear include the sound of smoke detectors, the threat of tornadoes, eating meals, and an electric kettle that we don’t own. I could fill this post with stories upon stories of the mounting anxieties over seemingly benign and trivial things but I’ll leave it at this, our girl is smart beyond her years and the big emotions that she feels are hard to process because let us not forget, she’s only four.

Our mornings are filled with anguish ridden protests over leaving the house, complete with hyperventilation and blotchy faced tantrums. This daily battle has become so out of control that we sought the help of a counselor. Jillian has gone three times and despite being given some relaxation tools, we still struggle. If anyone knows therapy is a process, it’s me. Yet in the thick of it I want a magic bullet. I want my beautiful girl to embrace the carefree nature of childhood and be a kid, not caught up in all of the potential sources of worry. She saw an allergy commercial on TV at daycare, and that night we had a long conversation about how her sneezes don’t necessarily mean that she has allergies, and we don’t need to be concerned with how bad allergy medicine tastes for the allergies that she does not have. These “talking off the ledge” chats have become all too frequent and it has left all of us tired.

This morning Jillian asked for a Bible verse and I felt sheepish that it had not been my “go to” weapon for this seemingly insurmountable challenge. I quickly found a short verse that I thought she could memorize.

When I am afraid, I put my trust in you. Psalm 56:3

I said it several times, having her repeat it back to me so that hopefully it stuck. It seemed to temper this morning’s storm but as I pulled out of the driveway of daycare after peeling both kids off of my legs, I felt the intense dread of worry that seems to follow me around like my own little ominous dark cloud.

Earlier this morning, I thumbed through the SCN2a group posts on Facebook and I happened upon a mom who asked a group question, “how old was your child when they began to have seizures?” Her post included that her son began experiencing seizures just one month shy of the age of three. My chest felt tight. I hit the home key on my phone and checked the date. Today is April 1st. We are just one month shy of Mark’s 3rd birthday. Sometimes I forget where we are.

I like to pretend that at any given time Mark won’t start seizing and lose every skill he has worked so hard to obtain. All of his progress could unravel in front of us in an instant at the onset of a seizure. Potentially irreversible brain damage could occur, it could start any day and that’s frightening.

Earlier this week I had a conversation with someone about the efforts of our SCN2a foundation; the contacts that have been made, the research projects in the pipeline and the number of families that have been added to the group. Excitedly I continued about how awesome it all was and in mid sentence they said “what about that is awesome?” And just like that I was slammed down on the ground of the reality of our life. Our son has a rare genetic disorder without a name, no prognosis, no trajectory and presently, no cure. None of that is awesome. I know that. And it scares me.

I received Mark’s very first psychological evaluation in the mail yesterday. This was a several month process of assessing his present level of functioning to determine future services. At one of the appointments I watched as they presented Mark with a variety of tasks, tasks that I know he is capable of completing, yet in that moment he wasn’t interested, and so he didn’t receive credit for those items. As I sat across from him and the evaluator I found myself pleading to God silently that my little boy would show them that he could do it. Later, I read through the report, saw how low his scores were and how the intelligence testing could not be completed because he was incapable of even complying with the testing. Mark may now be able to distinguish my photo from Ike’s but there’s a whole ocean of skills that he doesn’t possess and the implications of those deficits keeps me up at night.

The idea of Mark in public school scares me. What if he’ll never have friends? Who will advocate for him when I’m not there? What if he falls? What happens when they have recess? Will he sneak away unnoticed and then not come back when called? What will we do when his little leg gets just long enough to be able swing over the railing of his crib? I walked past his room the other night and heard him banging around, and remembered that he can now open door knobs. What happens when he gets out of his crib and then out of his room in the middle of the night? Sometimes he cries for unknown reasons for hours, and I worry that we’ll have to stop leaving the house or that we’ll have to start living on a newborn sleep schedule again. These are the “tornadoes” and “smoke alarms” that plague me.

When Jillian talks about her feelings, she uses words like “terrified”, “frightened” and even “anxious”. I wonder why those terms are in her vocabulary. Maybe her mother is terrified, frightened and anxious. I fear the dark unknown of this special needs life we now lead, and what Mark’s genetic diagnosis means for him, and our family.

Perhaps God placed that Bible verse in my path more for me, than for Jillian.

When I am afraid, I put my trust in you. Psalm 56:3

I try, anyway.