Beautiful Chaos

When I think of our life with our two boys, two words often repeat in my head: beautiful chaos.

Handsome firstborn

There are the moments where I still cry over what happened to our sweet Elijah; his difficulties evermore present now that I watch what typical development looks like on a daily basis. It's a constant guessing game as to what Elijah is trying to tell us and I grieve for him again and again (especially when he cries inexplicably). Is he hurt? Does he want something? Or even: Did he break a bone that I don't know about? How would I handle all that he does? How could I survive without being able to share my thoughts and feelings (as I am doing right now on this blog)? The laundry piles up on the couch, the dishes lay in the sink, the little guy gets new teeth and army crawls across the floor. Chaos.

Cute second-born

And then there's the times when Elijah throws his body on my shoulder for an armless hug and we embrace for a long time. Or the four of us roll around on the floor as a family and laugh and play. Or we sing "Itsy Bitsy Spider" after Elijah asks with the sign I taught him (even though I've had enough of the song for five lifetimes). Or I place our wind-up train on the floor and Elijah runs and laughs his head off as Oliver watches his brother and laughs too (all while I try to teach Elijah the sign for "train"). Or we sit at the dinner table and Elijah doesn't cry and Oliver is just learning to eat and we're therefore all eating together. Beautiful.

This is our life. It's a sometimes difficult one, fraught with grief and constant motion. Chaos.

It's a charmed one, filled with a gal and her three guys. Oh, sweet blessings. Always a boy to snuggle, as busy as they are. Beautiful.

Beautiful Chaos, indeed.

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I know it's been awhile again and I thought I should let those who still read this blog know that we're still alive.

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I Would Change It

I've heard the question posed at times: Would you change/take away your child's diagnosis if you could?

People fit into two camps on this one, of course. Yes (take it away!) or no (I wouldn't want to change my child and the path we're on).

Me? I'm in the resounding yes category. That doesn't mean I don't love and accept my child for exactly who he is, but if I could change things I definitely would. And it doesn't mean I don't understand why someone might answer the question with a no; I'm well aware that we would be different people without cerebral palsy in our lives. That's both a good thing (we have more compassion) and a bad thing (we struggle daily).

A couple of mornings ago, Elijah woke up early (before six). Andy let Eli out of his room and we let the little guy run around upstairs for a bit as we tried to convince ourselves that it was indeed morning. About ten minutes had passed when Andy got out of bed and that's when Andy noticed something on Elijah's face. Oh, Eli must have gotten into some of Lisa's make-up, Andy thought and he wiped off Elijah's face.
Except it wasn't make-up, it was a raw wound. Somehow Elijah had injured himself in that span of time and we had no idea how or where.

But how? How? How? How? How?

The question has been repeating over and over in my head for the past two days. I examined our room, trying to enact any possible scenario that could've caused his injury. We hadn't heard him fall, he hadn't made a peep or cried.  The last two days I struggled with guilt (how is it that our child hurt himself and we didn't know it?!) and grief (our child is unable to tell us what happened).

Every time I looked at Eli I was reminded...he's hurt and he can't tell us how by talking or pointing. His wound looked almost like a burn. What if we're missing something? I kept wondering. What if it happens again?

And it did happen again. This morning Andy heard Elijah wake up and he went to let Elijah out of his room.

"Lisa," Andy said, waking me. "Come here. Look what happened."

Standing next to his dad in the hallway was Elijah, his face covered in blood, his eyes still squinting from sleeping.

"What in the world?" I said and glanced towards Elijah's room. There was blood all over the carpet next to his door. We had thought Elijah's wound looked like a carpet burn, but I couldn't have imagined that he had been harming himself like this.

The first day, before he re-opened it this morning

We think he got up in the middle of the night, made his way to the door to leave, but being tired laid down on floor next to the door and put himself back to sleep by rocking and rubbing his face on the carpet. He hadn't hurt himself in those ten minutes the other morning, but rather in the night. We couldn't have known, couldn't have protected him from this unknown danger.

I'm glad we have an answer finally as to what caused Elijah's injury. It's not what I had expected, although, I can't say either of us are really surprised. Being able to appreciate pain is such a blessing; Eli had no idea that he was even hurting himself.

So, would I change Elijah's diagnosis if I could? You betcha. I would sign up for healing today. Today, Lord?

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