It’s been a while since I updated. Life gets busy and there is just no time for getting on here right now. I would love to change that but I’m not sure how to make that happen.
There’s a lot that I don’t post, that I don’t talk about. I do my best to focus on the positive and to avoid the negative. But sometimes that’s hard to do. We all want that perfect life, to put on the front that everything in our lives is glorious and amazing but when it comes down to it, we’re just putting on a face that is not real. That’s the face I’ve had plastered on for a while.
It’s hard being a Mom of four kids, even harder being a Mom of kids with Special Needs with 3 of the 4 having Epilepsy. It’s hard to wake up praying that this morning, on this day, your child will not have a seizure. It’s hard holding your breath when your son begins to cry, to rush to console him and meet his needs so he doesn’t drop into an Involuntary Breath Holding Spell and have the accompanying seizure. And when it does happen, you simply pray for it to be done and over with so that as a parent you can return to breathing again.
Yea, I hold my breath a lot.
You cannot understand my life. You cannot understand what it’s like to watch your child lay lifeless. You will never understand what it is like to see your child lost in a seizure that lasts 13 hours straight, wondering if the medical team is going to get it to stop with the multiple medications they’ve injected. You will never understand what it’s like to wonder if your child’s seizure will ever stop, if it will cause brain damage or other irreparable damage. The only ones who do understand the truth of this are those who love and care daily for someone with Epilepsy.
The real truth is that any day I could have a seizure that leaves me laying in a vegetative state, or dead. Any day my children can have a seizure that leaves them the same way. I hold my breath with every seizure that hits us. I patiently wait for them to end. I wait to see what damage is done and I’m praising God every time it’s over with no issues.
As a family, we’ve been extremely lucky. There are others who aren’t as lucky as us. There are many who don’t make it through. I don’t know why God blesses me to because any day that family that loses their loved one to a seizure could be us.
My biggest fear is losing my children. My biggest fear is having to bury one of them and never being able to love and hold them again. I know one day I will see them in Heaven but it doesn’t ease the missing of them here on Earth. Every day I pray I never see this fear come true in my life.
This is my day to day. At this point, the kids are well. Laycie is controlled on her Lamictal with no rashes and her appetite has returned. Except for her ADHD being aggravated a little and her 7 going on 27 attitude, she’s doing wonderfully.
Jackson is currently off medication. His doctor was hoping he had outgrown his IBHS but he hasn’t. With the stopping of medication, his IBHS has returned along with the seizures. We are waiting for a repeat EEG next month before attempting medication again. I’m praying he does well until then.
Winston and Emmalee are doing very well. I wish time would slow down because they are definitely not babies anymore. Kids grow up too fast.
Laycie’s genetic results came back. She has four possible abnormalities but one particular that the geneticists believes may be our familial culprit for Epilepsy: gene PRRT2 which is known to trigger seizures in children. It is now being tested against my blood sample to see if it’s a viable choice. Determining this gene allows for us to have better treatment options for now and also future generations and that truly makes me excited.
Well that is the update for now. Not much else has been happening. Until next time…