I think about hope a lot, probably because I struggle with a hope deficiency most of the time. I'm afraid to hope for Lively, although he gives me a thousand reasons to hope every day. Part of me thinks, if you don't get your hopes up, it won't be quite so terrible if (insert worry of the moment here). As a purging exercise for myself, I will list my top 5 worries here now:
- Another stroke. We don't know why Lively had a stroke. Although we think it happened around the time of his birth, we can never be certain. And since we don't know why it happened, we can't know that it won't happen again. We do know that although he had a stroke, Lively was able to eat and drink like a champ until he was 9 months old, and now he aspirates thin liquids and some purees. Why? No one knows, and no one is really pressing the issue (other than Pete and me). My worry? Another stroke.
- Recurrent infantile spasms. Lively had about 6 months without any seizures, and then about a month ago, they came back. They don't look like the infantile spasms. Well, they look like part of a spasm: Lively jerks his eyes up and to the left. But there's no limb-jerking, and they don't seem to be progressing. I notice at least one almost every day, some days more, some days none. We have an EEG scheduled in April, and we've increased Lively's Keppra, so the EEG should tell us if the spasms are back, or if he's *just* having partial seizures.
- Life-long, uncontrolled seizure disorder. He's at high risk because of his stroke and infantile spasms.
- Autism. There is a high incidence of autism in children with infantile spasms. Lively is very speech-delayed and doesn't always engage like we want him to. I wasn't really worried about autism for him until a PT expressed her concern by saying, "he's really in his own little world, isn't he?" and I started reading some things and got worried.
- Aspiration. Lively gets most of his nutrition and all of his fluids through his g-tube right now. He continues to aspirate, and it doesn't seem to be improving. Will he ever be able get rid of the tube? Don't know.
There are more, but gotta stop somewhere.
I've asked myself, what would happen if I just started to believe that everything is going to be fine with Lively? He has given me lots of reasons to hope. He crawls, he cruises, he will walk across the room holding just one of my hands. He is happy! For a long time, he wouldn't eat anything at all, and now at times he will eat 4 ounces of food 3 times a day. He has a bright, happy smile. He gives hugs and kisses.
One lesson I learned by being Lively's mother -- I can't prepare myself for having a sick child. Knowing ahead of time would not have made this experience easier, so not getting my hopes up isn't really protecting me at all. I might as well hope for everything for Lively: perfect health, "normal" development, eating and drinking by mouth, school, sports, musical instruments, dating, college, marriage, children of his own. Not hoping for these things isn't going to make it suck any less if he doesn't get them.
The trick, I think, may be to live in the present. Lively is doing really well right now, so I wish I could find a way to be happy about that (which I am) without always looking a step or a year or a decade into the future (which I can't). This may, in fact, be the secret to happiness in general: enjoy today, celebrate the child I have today. I do celebrate him. The future-worry, I'm afraid, might be an unavoidable part of motherhood.
When Katie's son Lively was diagnosed with infantile spasms in February 2010 at 6 months old, she and her husband Pete were told, "You have a long road ahead of you." You can read more about her family's journey down that road at Highway Lively.