Hold tight

Have you ever had a little one hold your hand ?

Do you remember them gripping tightly to your finger?

Whether it be for security or guidance or love. That little hand holding so tightly to your one finger was/ is such a powerful thing.

I'm sitting on my bed next to Kanye who is in his. Only about 20 minutes ago he had a drop seizure followed by a clonic one.

A drop seizure is like fainting-all his muscles relax and he just drops. The clonic part was where he started convulsions.

Post ictal (after seizure) he was really agitated pulling at his face. This is common and totally normal. Some people pick at their clothes or repeatedly hit themselves or others. It's just the brains way or regaining it's bearings. Kanye either pulls at his face almost like he's trying to scratch his skin off his face or he sleeps.

Luckily at the time of the drop seizure he was wearing his headgear and andre caught him before he hit the floor. Kanye had seizures all night last night so he's been pretty tired today.

Andre scooped him up and put him into bed. Not long after Kanye roused and was conscious again but started crying, he was disoriented and scared. I decided to sit with him until he fell asleep for reassurance. He reached out, grabbed my finger and held it tightly. He needed me and I'm glad I could just be here to wrap my hand around his, for him to know he's safe and he's not alone. So here i sit for as long as he needs.

It's amazing that at any age simply holding another person's hand, that touch, is so reassuring. To know that there's someone there, that it's going to be ok.

This morning when he got up and had a big seizure, I changed his sheets while andre changed him and we put him to bed. I opened a window to let fresh air in while the sun shined on the end of his bed. I left one curtain shut to keep the sun off his face. He slept for most of the morning.

This afternoon we had family come to visit. Andres grandma and aunty. Was good to catch up and spend a bit of time with them. Harper and Marley were a bit shy.

Marley is always wonderful when Kanye is like this and i feel for him each time Kanye seizes because he doesn't get as much time and attention from us as he should. He keeps himself entertained and we keep talking to him throughout so he knows we're still here for him, we're just busier. If there's a chance to one of us will spend a bit of time with him.

Often it takes both andre and I to deal with Kanye, or one of us with Kanye one with harper, we've realized over time that communication during this time is huge so we don't get in each others way or frustrated with the other.

Sometimes it feels like we're forever talking ' you take harper I'll make meds then you dress Kanye and I'll change harper' most of our day is like this it's not until evening that we get a chance to actually talk to each other about stuff other than the kids by then we're sort of all talked out.

Kanye is now asleep so I'll finish up and go see my other babies who are with andre.