Wednesday, January 6, 2010


It's amazing how people look at Jan. 1st as a day to make a whole new change, when really it's only just another day. This year market the turn of a decade, so that does make Jan. 1, 2010 a bit more of a big deal than just any Jan. 1st and I have big hopes for this decade. I'm not sharing any resolutions or thoughts on the new year here, but I do want to share some of my recent thoughts on how our perspective changes based on our situations. After all, perspective really is quite amazing!

We've been doing HBOT with Emma and she has finished 8 "dives" already of the 40 total planned. For each dive, it requires us to drive 1 hour 45 min. in the car to the place, 1 hour in the chamber, feeding, diapering, etc. before we get back into the car and drive another 1 hr. 45 min. home. This has caused our already long days to seem longer.

Today and tomorrow we do not have a dive. Emma is participating in her normal therapy schedule this week before we take a two week break from her regular schedule to complete 20 HBOT dives. That means we went to the hospital for PT and AV therapy this morning and she'll have OT tonight resulting in sort-of free time from 11am - 4pm! It's amazing to me how much time it seems I've just gained to my day without traveling to/from HBOT treatments and it's really just what we would normally do on a typical Wednesday.

Before I thought Wed. was one of the hardest mornings of the week - getting the girls up, Julia to school and Emma to AV by 9am takes quite a bit of effort! But today I flew threw the day and feel like I now have some time to spare. Not much has changed except for my perspective on time. And that led me to think about how my perspective has changed on other things.

Like children. Before we had children we had an idea of what it would be like to be parents and how we would handle a variety of situations that I saw other parents in with some less than cooperative children. Ummmmm......hello???? Really? Our expert parenting ideas changed drastically once we actually had a child of our own. I think this is typical for most parents, so I'm not going to add much to this.

Like deafness. When we first found out Emma was deaf we were heartbroken. But, as time went on and everything unfolded I now think that deafness isn't so bad at all on the spectrum of things that can challenge your child and that if Emma was only deaf how easy things would be. When I talk with other parents with children who are deaf without other issues I know how hard they think they have it, but I just think that it sounds so easy. Of course I also talk with parents whose children are much more involved than Emma and I'm sure they think we have it easy. Again, perspective.

Like cerebral palsy. This is a hard one for me to articulate how my perspective has changed. The most striking change has been in my attitude. I do not take any movement, sound or milestone for granted. I celebrate each and every one and pray each and every day for total healing for Emma so that life can be easier.

Like support. Everything seems so much easier when you have support from others. They say it takes a village to raise a child, so just imagine what it takes to raise a child with special needs. Unless you are raising one I really don't think that you can fully understand what it is like, how little free time there really is available in a day.

Like doctors. I used to think they were experts on what is going on, but now know that they know some things really well but that most often what is going on doesn't fall into a nice neat little category. So, they are make educated guesses on what is possible, what will work, and how to do things. The good ones are up front about it and really listen to you. I found out it's best to do your own homework, do your own research, and go in asking pertinent questions instead of looking for someone to guide you through the process. When I was in grad school the first thing they taught us was when the professor was talking, they were presenting their version of events and you should really question what they are leaving out instead of what they are including. After all, class has a start and end time and can only cover so much and what is covered is what the professor thinks is important but you are missing out on the big picture if you don't do your own research and come prepared to ask questions. This is a valuable lesson and one that carries over into the medical community!

I could say a lot more on this matter, but for now I'm done and I'm going to go make good use of the time I have before Emma wakes up and we go pick Julia up for school.

4 Comments from readers:

Tara Bennett said...

Wow. I loved this. I agree with every single word. Can I share this on kidz?

Katy said...

Great post. I've had that same thought about the "just one" disability kids. Like, if we only had one disability and not several! BUT, like you said, your perspective changes.

Tuesdays are our long days with two appointment in the morning and then driving across the lake in the afternoon which takes about an hour both ways plus that appointment, plus my parents wanting us to stop by since we're close. Makes my other days of quicker.

Anonymous said...

Great post! I know, having a "vanilla deaf" kiddo seems like a total cake walk to me now. I know that it's still challenging, but man what I wouldn't give to just be dealing with one issue. Oh well....

I feel for you guys doing all that driving. I drove about 11 hours a week for Ethan's appts. until we moved here. Now I'm getting more and more of his clinic visits and therapy visits moved to the branch that is 3 miles away. Best move we ever made!

Tricia said...

Ha! I laughed/smirked in agreement on the deafness in relation to other issues. I am right along with you on that one. People always ask me how hard it must be to deal with that, and I my answer is always, "Her being deaf is the least of my concerns."