I sit in Jack’s room on Thursday afternoon February 25. The sun is out which has been somewhat of a rarity in the southeast & perhaps the United States. It is also warm outside. I would love to be outside today, the weather forecast for the next week is nothing but rain. Jack hasn’t been well. In my last post, I touched on the fact that Jack was in a state of seizures. The good news is Jack isn’t feeling well, the bad news is Jack isn’t feeling well. I think he might have a little bug (which I hope that’s the reason) & the bug may of generated the seizures & it is not from Dravet in & of itself (or could be a bout of acid reflux). He’s had several bouts of loose bm’s & that alone is not anything he’s dealt with since he was a young boy in elementary school, Jack has also thrown up several times today. If he would go to the doctor, the list of maybes could be easily cleared up. It’s so sad knowing there is help out there for him but he won’t seek it.
When Jack is sick, he is extremely needy-much like most of the male species & he only wants me. Again, fitting for the male species, they typically only want the female head of the household (FHOH). The FHOH title has few benefits. In fact, I can only think of one, caring for your loved one & that’s it. Jack is driving me nuts during this sickness. It is hard being the only one that can comfort him. If he’s not in a full-on sleep, I have to be in his room. More precisely, sitting right beside him. It’s been a full 24 hours since Jack has had any of his medications, so nothing to offer support for his behavior has been taken. He tried to take meds earlier this afternoon, but threw them up. He didn’t take them last night because he slept from 9:30pm-12:30pm the next day. From what I can tell, the seizures are somewhat improved. Jack has been wanting me to lie beside him in the bed & I did until I couldn’t take it any more. He was being aggressive to me by squeezing my legs as hard as he could with his, squeezing my fingers, acting like he was sawing my arms off. It is beyond frustrating. I want to take care of him & help comfort him & he wants me to, but he doesn’t know how to accept the comfort I think. Then I have to make-up a lie in order to get up from his bed & sit in the recliner in his room. Today it is, “I need to sit in your recliner so I don’t catch what you’ve got & that I’ll be able to take care of you”. I am held hostage during his awake hours. I’ve had enough of NickJr! Paddington Bear, Bubble Guppies, all the infomercials of which Jack wants it all. Yes, they have infomercials on kids cartoon networks. Jack has already started on his Christmas list for this year. What makes it even harder, he won’t use his voice. He points & air spells things for me to figure out. Talk about frustrating. I’ve got taxes that I need to get busy on. Farmers, for some silly reason have to have their taxes ready by March 15 & I am way behind. Usually I’ve got it all tallied up, not this year.
I still have yet to hear from Jack’s neurologist. Email them they say, it’s a quicker way to get a response. I’d hate to see it if I called. Maybe writing a letter & mailing it would produce a faster turn around time! I’ve always tried to be sympathetic to medical personnel. We’ve been in emergencies with Jack ourselves so we know what takes priority, but this is ridiculous. He has drifted off to sleep, I’m afraid to move out of the recliner since it is a little noisy when I get up, so I’m hostage once again & he has the remote! The progression of Dravet seems to get worse every year. I was surely hoping that Jack’s young adult years would be smoother sailing but it seems like that isn’t going to be the case. His health needs are becoming more frequent, his neediness for me alone is something he is truly dependent on & obsessed with. It’s hard for me to believe anyone would be obsessed with me lol. It’s usually just weird men that are obsessed with the unusual earrings I wear. As badly as Jack wants me & only me whether he’s sick or not, he still wants a caregiver with him at home as well. He gets upset if no one comes to the house to watch him. This is strange to me. He stays calling me all day & asks me to leave, but wants me home at the same time. All very confusing & taxing to my mind. If Jack didn’t have the aggression, our lives would be so much better & more relaxed. I simply don’t understand why he has to have that trait. Because of the aggression, we often feel like we need at least two people in our home depending on what type of mood Jack is in. One to call for help & the other to hold him down. I have prayed for the aggression to be released from his body more than anything I’ve ever prayed for in my life. I figured I’d do a little blog while I sat in the recliner since I didn’t have anything else to do. To all of you FHOH’s, my hats off to you!