Kael with his Auntie Laurie
It's always such a struggle to decide whether to bring Kael on these trips. On one hand, we want him to see his extended family and for them to get know our special boy. On the other, traveling with Kael is difficult, exhausting, stressful and usually a recipe for disaster.
But this time, my desire for Kael to see my Grandmother, who has only seen him one or two other times, won out. And it was just as I imagined it would be. We (mainly my sweet husband Michael) spent the entire time chasing Kael, trying to keep him happy and safe. We rarely sat and were pretty much constantly on the verge of losing it. And of course, 5 minutes after arriving at my parents' house, Kael had a generalized seizure on the tile floor. I think it was a combination of the stress of the drive, the excitement of seeing all of the new people and luck of the draw. Whenever that happens, the smack of his head hitting the tile rings in my head until it literally sets my teeth on edge. I never get used to it. Even now, after hundreds of seizures, I still get that sick feeling in my stomach just thinking about it. So why, why, why do I it????!!!!
I'm just starting to decompress from the stress of it all, so even as I write this, I feel like I don't completely believe it.
First, I do it because Kael is a part of our family. He is not the only part - so we can't just hide ourselves away for fear of the seizures and the stress. And, he is not an unnecessary part that should be shut away and left at home - this child that everyone hears about, but nobody knows.
Second, he loves to be with people - especially his family. I don't know how he knows, since he's developmentally between 12-18 months of age, but he knows who is family is and he loves them.
Third, and you'll have to forgive my use of the word, but I will be damned if I let this disease control EVERY aspect of my life.
So I look back on this weekend and I am tired, still a little stressed, but mostly...grateful. Grateful that I have a family to reconnect with, when so many are alone. Grateful that I have a husband who sacrifices his time and comfort to care for Kael so that I can be with my dear sisters and their children. And so, so grateful that God has given me this beautiful, funny and infinitely trying little boy. He IS the instrument that God is using to refine me into what I need to be... If I will only see it. I'm great at seeing it after the fact. Once I'm outside (at least temporarily) of the trying situation, I can see how God is using it for my good and I can offer it as a gift to Jesus. It's the recognizing it in the moment that I haven't quite mastered. If only I could conquer that - what grace I would have to handle the struggle! If I could see it through the lens of the eternal - that it is a necessary step to shape me into pure gold...that is my prayer.
So please pray for me. I am far, far, far from keeping my cool when Kael stresses me out. But, I want to!
