Trying to Let Go

As a parent, you always hope you are doing the best thing for your children. Whether that is giving them some independence to figure things out on their own or stepping in to help solve a problem. When you have a child who has had a serious medical issue, it adds a whole extra layer of complexity to many of these decisions.

Jake being 12, almost 13, is at a time in his life when most kids his age start exercising more and more independence. I've seen Jake start to do this in certain areas the past several months. It's hard because due to his stroke there are things he simply cannot do on his own yet for a multitude of reasons, like go to the pool with his friends or hang out at Elitches for the day. I worry at times about him monitoring his stamina. He gets tired easier and doesn't always regulate himself because he wants to be just like the other kids and keeps going and going. I hope that the kids he's with think to slow down or suggest a stop to rest, but that isn't a fair expectation to put on another child, especially at this age.

Some of the things I worry about I'm told are typical for a 12/13-year-old boy and have nothing to do with his stroke. With Jake being our oldest we haven't gone through these stages yet, so what I think is a result of his brain injury, is really just everyday 12-year-old issues. Things like not advocating for himself at school, being unorganized at times, or forgetting a homework assignment. We're trying to implement tools where we talk about an issue at home and how he could deal with is, but he then needs to carry it out. Sometimes it works, sometimes it doesn't.

I know I'm more protective and involved at times than I probably should be. With all he's been through, it's hard to let him make mistakes and just figure things out. I don't want to see him hurt, physically or emotionally. Part of is the protective mom thing, he's already been through so much and continues to have challenges every single day, why put him through more. At the same time, I don't want to make life worse for him in the long run because I'm always there.

Ah, the joys of parenting...

7th Grade and Indoor Skydiving

Jake is now officially a 7th grader, so hard to believe. The start of school was far less stressful than last year, which was a very welcome change. Being in his second year of middle school, he knows the ropes plus he has made such remarkable process in the past two years.

Todd and I were talking the other night about his start of school in 5th grade which was only a week after he got out of the hospital. His teacher met us at the school on a Saturday so we could figure out the best way for him to navigate around. He needed to use the bike to get from the front of the school to his classroom, could barely get his chair pulled out by himself and needed a great deal of support just to get from one place to another. Initially, he was only able to attend school for two hours a day and even that wiped him out. In retrospect, we probably sent him back to school too soon, but he really wanted to go since it represented getting back to real life. It was probably too much physically, but I think it was good for his mental well-being.  At the time, we were taking things day by day and making the best decisions we could.

 We did manage to sneak in one last bit of summer fun before the boys started back to school and took them indoor skydiving. It was something they’ve been wanting to do, so we made it a reward for reading 1000 minutes this summer. I think they were both excited and nervous at the same time. Being the last to go in their group increased the anxiety. They each got to do two one-minute flights. Luke was a natural and it was so cool to see how well Jake did keeping his left arm out straight (You’re supposed to get in a superman position to “fly”). The only downside is, they are now hooked and want to go skydiving for real. Luckily they aren’t old enough so we can put that off for a few years. :-) 

Yellowstone

We spent the last week in Jackson Hole and Yellowstone for some unplanned, but much needed time away. My grandfather passed away and his funeral was in Montana, so we decided to  add a few days to our trip and take the scenic route. The park was pretty crowded (as you'd expect in July), but we still enjoyed ourselves and got to see a lot of sites.

A few weeks before we left,  Jake had another round of botox, a higher dose than he's had in the past. His PT and Rehab Dr. are trying to see if it will be more effective and last longer than the dose he's been getting. The tone in his foot is still causing problems with his walking since he can't get his foot flat. They've started having conversations about possible surgery to cut the tendons and release the tightness, but want to get a little more aggressive with the botox first since it's less invasive.

It seems to be working. He was doing so well before we left  for Yellowstone, his PT told him to walk as much as he can without his brace. He was a little nervous at first because he is so used to having the brace for support, but he's doing really well. It's such a good way for him to strengthen his left leg and increase the range of motion in his ankle. We stopped by the grocery store on the way out of town and I shot a couple of  short video's of him walking. http://youtu.be/d7wlVm3YdFE Seeing him walk this well in a public setting without a brace literally brought a huge smile to my face and tears to my eyes. Due to the sheer volume of walking we did on vacation, he wore his brace most of the time during the day. But even then, I was amazed at his stamina. We took a couple of different hikes that had pretty good inclines along a rugged trail, he did amazing. There is no way we would have attempted something like that a year ago. Óur plan for now it to have him wear his brace to school, but try and go without it at home and on the weekends if we don't have too much planned. Excited to see how is walking continues to improve without the brace.