Sometimes it's tough

Reuben started his day at 4:45 this morning. This is not unusual for him in general, but for the last few weeks he's been sleeping in on a much more "normal" routine for the rest of us, often not waking until the 6am hour. This morning he dozed on and off, and around 6 came into our bed where he never really slept, but just lay rather restlessly beside me. At 6:30 his body lifted slightly as a classic tonic/clonic seizure (what used to be called "grand mal") started. Because he was semi-awake, he had his thumb still in his mouth.

You really do get somewhat desensitized to seizures after you've seen your son have, by now, hundreds of them. It's just part of life. But then there are days, like this morning, when it's really, really tough to watch your child go through something like that. Seeing his beautiful little face with the eyes pulled wide open by the seizure, his body tense, and his heart racing, and his little thumb in the death grip of those clenched teeth just hit me hard. My mind flashed back to the days after he was born (I have newborn babies on my mind for obvious reasons).

 

We had no idea back then what his future had in store for him (though who ever really does for any of their children?) We had no idea to believe he was anything but a "regular" little boy - no idea that every cell in his tiny body was coded differently at the chromosomal level. As I watched the seizure grip him this morning it brought me to tears as I realized how all of the regular hopes and dreams that parents have for their children are just not there for Reuben. My dreams for him instead are that some day I can let him go outside without direct supervision and not worry about him wandering away. Or that he may have more than 30 "words" in his vocabulary so I might get a glimpse inside of his little head, which in so many ways we know has a whole lot more going on in it that we're able to see. Thoughts of marriage, or grandchildren, or proud accomplishments of any notable (to others) variety are simply not part of the picture we expect.

I realized this morning the fierceness with which I desire above all else one thing for him - that he would know Jesus, and find his delight in Him and trust his life to Him. And once again I find myself yearning for heaven where this pain will no longer be part of his life.

Some days it's really tough watching your child suffer in this way. As I write this 16 hours later, he's had five more tonic/clonic seizures and four complex partial seizures. It's been a rough day for him. Three times now he's had his thumb stuck between his teeth during a tonic/clonic seizure, and now it's cut and has been bleeding. He's woken at least every half hour since going to bed three hours ago - though only five of those awakenings were seizures.

These days are tough and yet still full of the goodness of God on a deeper level than just little every day blessings. (Not to minimize those aspects of his goodness, by any means, but some things are buried deeper and less obvious!)

Our lives have changed since Reuben. And I can't ever bring myself to say that I wish my life still was the way it was "before." Because I can tell that God is using this pain to shape me, to shape Matt, to shape our other children, and to shape Reuben. There are so many opportunities to talk with Reuben about how big and strong God is when we are small and weak. And he gets small and weak. There are so many chances to talk with Reuben about how God is always with him - when he is scared (his complex partial seizures include fear-centered hallucinations), when he is alone (it takes me or Matt time to run up the stairs to his room when we see seizure activity on the video monitor, so we aren't always there with him the whole time) - but God is with him all the time. God doesn't need a camera. He is there. 

And I know, too, that Reuben's being "not normal" was a key piece for both Matt and me in different ways to bring us to the place where we were excited to embrace Krassimir as part of our family. I don't know that that's where we would have ended up had God not prepared us through giving us Reuben.

I sure love that dear little boy.