The Revolving Door

I wanted to give a quick update on Oliver. At school he continues to do well. He is learning so much and loves his classmates, especially Ya-Ya! He is still struggling with biting---kids and other objects. Some days are worse than others, so we just roll with it.

The other night he went up to the SONY letters on our TV, he pointed and started singing his “ABCs” it was so precious. Surely, it is something he learned at school. That may seem insignificant, but that is a huge step for Oliver. Before he started having delays I took all the milestones for granted. I will never do that again. Never.

He also seems to be making steady gains in language which we are enormously thankful for. This morning he has been carrying around a picture of my mom and dad. He keeps saying their names and saying tractor (which sounds like cracker) when he points to Papaw Tommy. He keeps walking to the door. I think, he thinks Papaw Tommy is going to roll up in Holly Glen (our little patio home community) on his tractor...

Unfortunately the big bad seizures seem to be here to stay. Oh Y'all, it just stinks! Big sigh.

Reading about seizures is one thing, but seeing a two year old have one is a totally different experience. I hope you never have to see a child have one. It is unsettling to say the least.

Earlier this week he had the big bad kind.

Here were my thoughts during those 2-3 minutes.



“I wish I had the flip video with me. Why did I take it out of my pocket?”
“I need to get that toy out of his mouth. Geez, his jaw is totally locked.”
“Oh, Lord Jesus help me, I can't get it out. There is no way I'll be able to get it out.”
“ I am not 100% sure where his Diastat (rescue med) is. Oh my gosh, I hope I don't need it. Is it in his backpack?”
“OK, don't panic, he is still breathing. You are ok. You can handle this.”
“Wipe away the drool. If his lips start to look blue, call 911.”


A minute longer and...



“Oh, Thank you Jesus, thank you Jesus, he is coming out.”
“Oliver, you are ok. Mama is right here. Just relax, baby. Everything is ok, now. I love you, baby. I love you...baby”



Big long sigh.....



“Living like this is exhausting.”
“I should have a better attitude.”
“Lord, help me. Help me see YOU. I'm struggling.”



Then Oliver sleeps. Like he is this very moment.

The post-seizure exhaustion takes such a toll on his little body and mind.

~

The only positive spin I can put on the revolving door that is The Seizure Monster is that we return to Boston in less than a month. I pray there will be some options to put the Monster down for good.

In the meantime we pray, we enjoy each other, we savor the moments that aren't tainted by the seizures (and there are still so many even though it doesn't always feel like it.)

Finally, we're grateful for all of you. Thankful that God put you in our lives and when we have trouble seeing through this fog you light the way. Carry us through. Help lift our eyes toward Him.