And I am not talking about the perils of sharing your bed with a spouse and little people.
Since January, I have hardly slept. Yes, the little sleep that I was getting since becoming a mummy reduced even further. It is fitful. I'm on edge.
Every strange noise coming from down the hall makes me leap to my feet, run down to the other end of the house and brace myself as I enter his room to check on him. On my little Liam. His seizures have always occurred in his sleep. At any time in his sleep.
The last one was at 4 in the morning, Easter Monday. We heard a strange choking/moan. Rick and I both leapt to our feet and ran down to Liam's room. Turning that corner into his room, seeing him struggling to breathe as his body was rigid and shaking, is a sight forever burnt on my mind along with the image of him fitting in the car only days earlier.
|Liam gets the best bed hair!|
Liam has the flu. He has high temps and is breathing strangely due to congestion. I am around-the-clock taking his temperature as high temps can bring on seizures. I am tired. I am writing every thing down.
And today will be 1 week of Liam being on his seizure medication. We are easing him on it and at this stage he won't be on full dose for quite some time. The doctor said to expect more seizures until that point. It is a possible 2-year medication period. This concerns me greatly as there are side-effects.
Two nights ago, Liam's temp was 38.8C and he was shaking. Like really shaking. If he wasn't conscious I would have said that it was seizure-like. Full on body tremors. This could have been the high temperature but one of the medication's side-effects is tremors. It is heart breaking.
And through this all, I keep in mind the fact that there are children out there faring far worse than my Liam. That there are parents out there far more tired than I am. I am truly grateful that I am coping. I am so blessed to have Liam as my son. He is an amazing little man that astounds me daily with his achievements, his art and his thoughts.
I am on edge, but that is where you get the best view.