So it begins. The first injection free morning in two weeks. And more seizures than I can remember. We've averaging 5 clusters...or 40 seizures...a day.
Last time we weaned my stomach was in knots. Every little odd movement had me scooping my heart up from the floor. Where it lay a quivering blob of worry. Wrapped with a bow in fear & trembling. I don't think acceptance had yet taken hold.
The worry (fear & trembling too) lessened to a dull ache over time. Although it never really went away.
At one time I emailed a couple other moms whose children were on a similar IS path. I asked them if they felt as guilty as I did. It's bizarre. The way emotions assualt. On the one hand I was over the moon that Trevor was SF. On the other...I had this shadow of guilt. Knowing that so many other babies were still suffering.
For me...that's the most maddening part of this disease. There are no answers. No directions. Nothing makes sense. Everything is muddled.
Even the answers that are available are not certain. Trevy's relapse is case n' point. After all...he was one of the lucky ones. It took everyone by surprise. Except that shadow knot that was stuck way down deep in my heart. The pit that was ever waiting for the other shoe to drop.
The same pit every mommy of a SF IS baby lives with.
I know that pit well. I should've given it a name.
But instead I tried to ignore it. Which never really worked.
But this Wean is different. There is no pit in my stomach...it's been replaced by an ache in my heart. Because somehow...the joys of all that Trevor has (and continues to) overcome...doesn't erase the sad. I never understood that surrender & sad could be friends. But they are. I know it doesn't make sense...but I'm finding that I can surrender my son's future to the One who gave it to him...and him to me...
and I can mourn.
It's okay. To feel. To cry. To laugh. To accept. To fight.