grieving the "might-have-been", coming to terms with reality

[raelize]

my dd has celiac induced epilepsy. so far, as long as she doesn't eat gluten she doesn't have seizures. BUT- her seizures last 45 minutes without intervention. we have diastat when we need it. but i was recently thinking about stuff that she will never be able to do. basically because i don't trust that she won't have seizures in bad situations, and that other people will be able to handle it well. a seizure for 45 minutes is a very serious situation and in adults it can be fatal.

i was thinking about how we may never visit dh's coutnry of origin-peru- because i don't trust their healthcare. if she needed to be hospitalized with a seizure? what would i do? or what if we were hours away from medical care and the diastat wasn't working? so far it has worked- but what if it didn't? would i trust her healthcare there?
or my beloved summer camp that i went to as a child. three to four days out of the week the campers go on hiking and canoeing trips on the Appalachian trail and other places. would i trust that in the middle of nowhere if seh had a seizure she would be able to get medical attention fast enough?

how do others handle this? part of having a special needs kid is letting go of the assumed future. i know that there are others with far more serious illness/needs who's parents have to give up far more mundane dreams. how do you grieve this?

[SpottedFoxx]

I think regardless of our children's challenges we all have to grieve our dreams for our children. Whether it's being able to travel, participate in school, etc. However, after grief comes acceptance. You need to give yourself time and be very gentle with yourself.

The world is becoming a much better place for our kids. My son attends summer camp right now. He has an advocate who, to the rest of the world, just appears to be another counselor. However, her job is to ensure my son's safety and make sure he has a wonderful and inclusive summer.

I know there are therapy dogs who can sense an oncoming seizure. Maybe that is in your daughter's future. Maybe a companion will open up her world. Maybe there will be a breakthrough for her.

Whatever her future is, she has a mother who obviously loves her fiercely. Hugs.

[~cassie]

I grieved a lot in the beginning but as he gets older, it lessens a lot, for me. I always wondered how he would be able to do certain things, like his brother does, and we have made adjustments in order for him to do the same stuff, or close to it. At some point we have to give the control over to them so I am trying to prepare him little by little to take care of his own needs--right now it is telling me if his "ears" aren't working properly or for him to attempt to put them back on. I think as your daughter gets older you will realize that dreams will be realized, it just might not be the same ones you envisioned, and that's ok.

[starlein26]

Slowly, very slowly, things will feel better. There is so much loss to process and accept.

Seizures are scary. My son also suffers from status epilepticus and I share many of your concerns with regard to travel. It's not easy to have to make decisions like this.

[SpottedFoxx]

Forgive me, I don't know about your child's condition... are there adults with this condition (or is it something kids outgrow)? Maybe you could reach out to them. Knowing that your child will grow up and have a good life can make this a lot easier. I share some of my son's challenges and it gives me peace knowing that I got to where I am without any assistance and, with the help we are getting him now he's going to be amazing.

[Emmeline II]

You may not be able to send her to your camp but you may be able to find one for children with medical needs.

My son doesn't have a medical issue like that but his behavior is such that there are things I've had to give due to his behavior including an AP group, a homeschooling group, and TKD. Now he is finally old enough for pee-wee football, the one sport that seems to provide an outlet and focus for his issues.

[CherryBomb]

I've been dealing with this lately, too. Dd1 is 9 and doing all this stuff that I don't know if dd2 will ever get to do. Like she's having her first sleep over this Friday, and I was thinking yesterday that's something dd2 might never get to do. The older she gets the more obvious it is that she's different, and kids already tend to avoid her. Her disability was random chance (stroke) and I sometimes feel really frustrated with the unfairness of it. Then see other kids who have had strokes who are so much more seriously disabled than she is and feel ashamed for pouting about it. She can run and play and tell me she loves me, a lot of kids with strokes as bad as hers was can't do that. So, idk. I think the feelings are normal, but I'm not quite sure how to grieve it, either.

[AndVeeGeeMakes3]

It comes in stages for me. Maybe because I can't process it all the time, ya know? I think that's better for me. But, also, I'm constantly amazed at how she pushes against, past my expectations and worries. I'm trying to eliminate the "she can't" phrase and just let her try stuff. Within reason, of course.

Because dd's condition is heretofore unnamed and unmapped, we really don't know what's in store for her. Will she ever gain another pound? Will she ever be rid of the feeding tube? Will she ever NOT have to carry around inhalers and a satchel full of meds? I'm trying to make myself stop thinking this way. She will do what she will do. And, as long as I model acceptance and the will to have pleasure in the day to day, THAT's what she'll experience.

But, yes, it's hard.