Monday, January 16, 2017


It's confirmed. Gus Gus has a form of epilepsy, specifically generalized epilepsy with febrile seizures plus, or GEFS. He started on Keppra on Monday, at half the therapeutic dose so we can ramp up to the correct dose after a week. Keppra's usual side effects include agitation and aggression. Our neurologist continues to impress me. She called me back the day after the EEG, when they had told me it would take 7-10 days for results. She talked to Lainie's neurologist before calling me, so we had a family-wide game plan. She took over Lainie's care, so we can try to combine our appointments in Kansas City. And she told me her number one priority for John is to keep his wonderful personality intact, to just help him be a seizure-free version of himself. If the first medication changes his personality, we will try a second or a third until we get the right combo to not lose John, not sedate him or change him, but to keep him safe.

Since then, he has been a grouchy Gus, a wonderful nickname from John's daycare provider. But, it's hard to tell the difference between a tired toddler and a medication side effect like that.  In my mind, we give it a month before we decide if it's the medication or a bad day. And in that month, he will have another physical with our pediatrician, and then an MRI at Children's to rule out a more sinister cause of the seizures. But let's be realistic -- with a sister with a similar diagnosis and a second sister who had one febrile seizure, a tumor is a pretty far-fetched fear. Still, we will need to rule it out.

Personally, I'm doing okay. I cried for about an hour. But that's all I needed. That, and Jay. I think I had accepted this was likely back in November. I worry about Jay; he is hurting from this. But he and I were both overwhelmed and bolstered by the outpouring of support on Facebook, of the random gifts of prayers and books (THANK YOU!) and cards and so much more. Our prayers are strong, but they are even stronger in bulk!

I think it's funny, too, how even how I approach a child with epilepsy is different with a boy. With Lainie, I worry about how she can have kids, carry a pregnancy, while on anti-epileptic meds. With John, I worry about if he will be able to drive when he is in high school. There are so many other things to worry about, but those are my big picture things: John and his independence, can Lainie be a mom.


My therapist has me reading a book called The Gifts of Imperfection by Brene Brown. There is one chapter titled, "Cultivating a Resilient Spirit: Letting Go of Numbing and Powerlessness." It talks about what we do to numb ourselves from feeling pain, but that if we numb our emotions from pain, we also numb them from joy. Some numb with drugs or alcohol, some with food, some with busyness. I do believe I numb with busyness. If I'm too tired to think, then I don't have to feel.

It talks about hopelessness. It asks, "how do you feel when you believe that you are powerless to change something in your life?" I do feel powerless to change this, and that's why I also was feeling hopeless. But I was focusing on the powerless to eliminate epilepsy, Instead, I need to redirect my self-appointed goals. My goal is not to eliminate epilepsy. My goal is to keep my kids safe, to do everything in my power to help them survive, intact, to adulthood. And I am not powerless in that regard. We have medication to prevent seizures, we have tylenol to prevent fevers, we have a healthy diet and lifestyle to do the best we can to prevent illness, and we have medication to stop the seizures if they do come. So, with a change in perspective, I'm no longer powerless, and therefore I'm no longer hopeless. 

The book also talks about being afraid to love, afraid to feel so deeply, because you know that sets you up for extreme pain. It's that ridiculous game I play on even the best days, where my mind starts wandering to thoughts of what-if, what if Katie had a car wreck, what if J or L had another seizure, what if Maggie continued to struggle with her own behavior issues, what if Nat feels invisible. Sad thing is, all of those what-if's have come true; all in the past six weeks, in fact. But we have survived.

The biggest what-if -- the What-If of losing one of my kids, the What-If that rise up in my nightmares so vivid that I wake up crying --  has not come to fruition. And for that, I need to remember to practice gratitude. I am practicing being thankful for what hasn't happened and not focus on what has.

And so tonight, at 1:53 a.m. on my first night off in four days, I am thankful for the day. I'm thankful for the hour or so that the kids played outside, thankful for four girls taking pictures of our ice storm, thankful for Natalie and John running happily in the hoop building, thankful for John splashing in every mud puddle he could find. I am even thankful for the emotional storms we have endured that taught me to be grateful for big messes from little people, and know that the mud washes off but the memory of their laughs while getting filthy lasts forever.

I am thankful, even though I now have Lainie in the bathroom with a stomach flu, even though I am praying her version of this illness doesn't spike a huge fever like it did for Maggie, praying that if it does cause a fever, that her medication will keep her seizures away.

I am thankful, even though I also have John at my feet sleeping on the basement floor, because after bedtime, he started coughing and is pretty rough. Delsym and a xopenex breathing treatment helped for about three hours, but he needed a second treatment at the four hour mark. And so I pray for no fever for him, no seizure for him, that his breathing is eased, that we can stay away from the ER tonight.

And I pray for my own heart, that some day these typical childhood illnesses won't make me so damn scared.  I pray that I can stop being frustrated, and can some day understand how one boy can go from the running through the mud puddles to struggling to breathe and twitching all over in a matter of hours.

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