- 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.
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.
Katie,
ReplyDeleteIt is so hard to stay in the moment. The idea that by thinking/worrying about something you can somehow control/prevent it is also ingrained into how you have to think as a doctor...no wonder it is so hard for us to stay in the present.
The worry must be exhausting. I hope you can somehow have some more worrie-free hours as Lively continues to progress...they are sorelly deserved. Hugs, Lauren
Even as a parent of children without "special needs" to date (I can't think of a better term and hope that one isn't offensive), I find that worry is such a difficult part of raising children. I'm a glass-half-empty kind of gal and I am often afraid to hope for too much. The fear of our children achieving or being blessed with less than the desires our hearts fill to overflowing with is very painful. For you I can imagine that the intensity of this emotion must be manifold.
ReplyDeleteWhen I am afraid to hope I remember something a very wise mental health professional once shared with me. I asked him, "Isn't it ridiculous to hope that a person will change when all evidence points to the contrary?" He replied, "That is hope and hope is never ridiculous; on the contrary, I think it's what makes us human."
I also think of Anne Frank, who believed that people are essentially good at heart, despite her personal tragedy.
Sometimes it seems easier to me not to hope, for fear of hurting too much if our dreams are not realized. But living without hope and optimism seems a dull, unfulfilling existence. Your hope for Lively is what makes you a wonderful mother. And it may even help him to thrive.
Thinking of you and hoping you are hanging in there and knowing there are people out there thinking of you, Rebecca Jones
It gets easier to live in the moment as time goes on. I still worry, but it doesn't strangle me like it used to.
ReplyDeleteKayTar is almost 6, she is in a mainstream Kinder class and she gets a enteral feed every day via her little pump backpack at the table. Even if he keeps the g-button for a long while, it doesn't have to be a bad thing. KayTar thinks her tube is awesome. I don't know what the future holds for her (though, she promises that she will be eating baby food purees as an adult, LOL), but we're doing well right now.
"The trick is, I think, to live in the moment".... YES. I agree with you, though its difficult. As a mother, our job is to see everything, prepare for everything, be hopeful yet realistic.
ReplyDeleteI can completely relate to this post. I am half-reluctant to share my story for fear that it will make you run through your top 5 list of worries again. My eldest daughter (of 4 girls) began seizing at 12 weeks of age. She did not have a stroke and they diagnosed her not with infantile spasms but with a generalized, tonic-clonic seizure disorder. She was on many different meds. Her main problem was that she frequently went into "status epileptus." I can relate to you so much. It is hard. Very hard. Present day, my daughter still has an uncontrolled seizure disorder, autism, and severe cognitive impairments. I dont say that to make you worry!! Every situation is different. What i DO want to say is that the only real thing you need to do is love your baby. Whatever situation arises, "normal" or "different", the main parental ingredient is always the same: Love them. Care for them. Savor every day with them. You're doing that, so you're doing great :)In the end, "it is what it is." It wont ever change the way you feel about your child. :)