Saturday, September 22, 2007

Lessons I've learned

This weekend I attended a conference for parents of deafblind children. It was wonderful (even though we were a couple hours late). The best part of the whole conference was meeting other parents and really connecting with them.

I met Lisa last year, but it was different seeing her this year because I'd read her blog regularly and felt like I knew her better. At least better than the few-hours-once-a-year opportunity I've usually had.

I also met up with some Brendas, Amanda, Mikael, Tiffiny and Lee, Lynn and Corry, Scott and Leslie, Geoff and Diana (sp?), Mikael and Jason, a new family (Cross), and so many others. I also missed some good friends - Derek and Stephanie, Stephen and Heather, and Kye. The State put this on for parents as part of a Technical Assistance/Training grant. We stayed at the Embassy Suites hotel (awesome breakfast, great location), and participated in several informative workshops.

As part of the conference this year, they requested a picture of each deaflind child as well as a writeup of the lessons we've learned from our child. To provide us inspiration, we watched the film Teachings of Jon - a very heartening depiction of living with a child (or adult) with disabilites.

And with that very long introduction, here are some of the things I've learned from Tyler:

1. Sometimes the things that we need (& that are for our good) are very difficult to go through. Sometimes those things are over quickly, like brushing your teeth, but sometimes they drag on, like chemotherapy or recovery from spinal fusion surgery.

2. A hug or a snuggle can go a long way towards making someone feel better. When Ty was having weekly chemo, he would get anxious and start 'yelling' at me as soon as we walked into the hospital. He weighs 75 lbs and is 5' 2" tall, but as soon as I would place him on my lap, he'd relax. There was something about holding him for three to four hours straight that helped me to relax too.

3. Kids in wheelchairs are still kids. A game of tag in a wheelchair can be even more exciting than it is on foot.

4. Everyone needs friends. Everyone - even boys in wheelchairs who can't talk, even their moms, dads, brothers, and sisters. Everyone.

5. Laugh often and with abandon; remember to take joy in the small things.

6. Every day, every moment is a gift to be treasured. Even the hardest days, are reminders that time goes by too quickly.

7. By all means, listen to your favorite music and dance in your own, unique way. It's one of the best pick-me-ups.

8. You don't have to be able to talk to tell people you love them.

9. When others help you, you both benefit. I know I've gotten far more from helping Tyler than he has gotten from me helping him.

10. Speak up if you don't like or don't understand something. People are not mind readers, you need to let them in on what you're thinking. (We all know very well how Tyler feels about church).

11. It's not worth it to get stressed out about being on time. Of course, you give it your due diligence, but inevitably there will be a diaper change right after you put the wheelchair into the van or some other event may slow you down. If you're going to be late, it's not going to benefit anyone if you get uptight about it. Like Mr. Triumph says, "We get there when we get there" or "at least we're trying to get there."

12. The world is at your fingertips. You only need to reach out and explore to expand your horizons.

13. For crying out loud, pack the overnight bag, already. (make sure you overpack it!)

For sure, there are a number of humorous, yet practical things too. Maybe I'll post about those later.


athena said...

i love the things you have learned. you're inspiring too. i always come away with good vibes whenever i read your blog.

Summer said...

Thanks for these great reminders about what's really important in life.

Corrie said...

athena - thank you, your photos always amaze and inspire me.

summer- I think I need these reminders more than anyone.

b. said...

I love that video.....that's one of our fav's at our house too!
Great reminders. Great woman!

Corrie said...

b.- isn't that video funny (in it's own way). we kept saying that if someone poked their head in while we were laughing at/with this Down's kid, they'd think we were insensitive, but really we could just identify with the whole thing.

b. said...

One of the best shifts I have ever had was in a room with my friend R, he had severe cp and could not verbally communicate with us. We spent HOURS listening to music and laughing our heads off at this silly stuffed big bird who chatted with us when we pulled his string.
If you have never experience that, you have no idea how wonderful it is!

claire said...

There is a special magic that happens when another mother of a special needs child shares her story...thank you! I needed this today. I kept thinking "so true!" Over and over....
Especially about the overnight bag (everytime we end up rushing to the hospital. If it's packed we go home, if we don't bring it,we stay. Sometimes for the night, once for 3 months!)
Wish we'd been at the conference, we missed all of you!