Cause some days, it is just weird to be positive.
Hospital twice in a week. Once for infusion and once for a check in with Franz.
We have had three nights in a row of inconsolable tears.
Seizures have gone from "normal" to full body electrocution to clusters of 10-15 jolts in a row.
He wants to get up, but he doesn't have the strength or balance.
He wants to suck his bottle but his motor skills can't find his mouth.
He wants to be held but not touched.
So, we went down on the Vimpat because it was messing with his balance. Is that the problem? We held the Afinitor for two days when we got his labs back last week because of his white count. Is that the problem? The infusion makes him run a fever and vomit and we have read about other side effects that go along with infusions such as migraines. Is that the problem? He was off the Afinitor for a month five weeks ago and it takes a long time to get out of body. Is that the problem? TSC is a moving target, always moving and changing. Is that the problem?
I know that this is just one (three) bad days in a row. I know Houston is just around the corner and we will have some more answers. I know Dr. Franz is the best TSC neurologist in the world. I know faith and fear cannot coexist. But some days it just feels weird or disrespectful to be in a good mood. It feels distasteful to laugh when there is this pain that you cannot save your child from. I will say, shopping the Dress and Dwell clothes boutique overstock sale last night did help. Getting away so you don't feel like an a-hole for smiling and getting excited about something trivial. Even if it was the sale of the century (seriously, everything was $10), is going shopping while your child is hurting irresponsible? I know the answer is no, but I also know that every parent knows this feeling. We all have this disgruntled person, either in real life or in our subconscious, that tells us somehow that what we are doing is not enough for our children. We aren't doing it right. We are selfish for going to dinner or work or school. We are reckless for spreading ourselves to thin to try to do it all.
Come on guys... we aren't.
We are the example to our kids of hard work and responsibility, but most of all we can show them that it isn't weird or rude to be happy when the wheels are falling off, it is freaking awesome. (And so are my new $10 velvet leggings.)
Mother of two amazing little boys, one who just happens to be a TS warrior.