I am amazed that he finds so much to smile & laugh about as he lives through each seizure saturated day. And his days are saturated. But he fights his monster in silence. As many times his seizure war goes unnoticed by the world around him. While I fight the urge to rage. And scream…how can you not see that! While he…the suffering one…finds reasons to giggle. Sometimes even in the midst of the battle.
Of course…Bristel & Toby crack him up without trying. They run by…he laughs. They call his name…he laughs. Toby makes funny faces…he laughs. Bristel blows a raspberry…he’s in stitches. There is no doubt…Toby & Bristel make his world complete.
He laughs at me too. We have our little giggle games we like to play. He loves peek-a-boo. Especially when I run and hide in another room…and pop out to surprise him. He loves when I tease him with his food. And throw soft toys at him. And tickle him. And run away…he adores the chase.
What if the hated seizures are what makes him so beautiful?
In my saner moments…I think to myself that I should ask my doctor about anti-anxiety meds. Because clearly the stress is getting to me. Or that every parent that has walked this road had these thoughts.
Jonathan thinks I’m nuts. He reminds me how freaked out I was to use ACTH that first time. And with each subsequent medicine after. But how we had agreed that we would always do whatever options were available that offered Trevor the most hope. And he’s right. But I remind him that he knew I was a loopy before he kissed the bride.
But honestly? It just feels so heavy. So very heavy. And so freaking scary.
I have put SO much hope into this nightmare miracle. Like somehow this is the answer. The happy ending.
But in my bones I know this is really just the beginning. Trevy is very very young. And we have a looooong and still very uncertain road ahead of us.
That might actually be okay…if I could only know that it would be with him. The him I have today. The him that I have spent two and a half years falling head over heels in love with.
And sometimes I can’t help thinking…
the trouble with so much to love…
is that it means…
there’s so much to lose…
I’m feeling pensive today. And clearly over emotional. But I want to make sure there is no misunderstanding…
I am SO very thankful for the other families. The brain surgery veterns. Who have had the courage to gut wrenchingly honestly share their stories.
Because it gives me a compass. And some comfort. And some concern. But at least I know that I am not alone. We are not alone. Somehow that makes it a teensie bit easier.
Thank you to those who have reached out to me. It is truly a support. I know it may seem counter-intuitive…but even the sad & scary is helping to hold a very fragile heart (or perhaps head) together. Thank you for being a sounding board. A question fielder. Comment leaver. An email answerer. For giving of yourselves by following our journey. A deep heart felt thank you…