Tuesday, May 3, 2011

We are the Company we Keep.

"We are the company we keep" a saying I like for it truly stands for us. We spent last Sunday at the park with a lot of families living the life of special needs. We celebrated the 20-year anniversary of SNAP (Special Needs Aquatic Program) and "20 years of water magic." The founder of SNAP, Dori, was there and a true inspiration. She had a vision 20 years ago and followed her dream. It all started with her giving aquatic therapy one on one and she realized how many people could benefit this sort of therapy.
For us it has been a real eye-opener. Going to the heated pool (93 F. / 34 C.) where many people enjoy the warmth of the water on their bodies. For some people who are really physically challenged an average pool is not possible. The water is simply too cold. Also at the Berkeley heated pool they have special steps to go in and out of the pool and a system of pulley to enable people to be put in the water from their wheelchair onto a sort of elevator.
Dori mentioned how, at the pool, there is no physical barrier between our children and their helpers. They touch their bodies, twist them, stretch them, handle our kids with the most gentle and caring way. We were sad to say goodbye to karen, Kelly, Barbara, Shelby (Zoé's best friend at the pool), Dylan, Nathan, Nancy and many more wonderful people we encountered along the way.
We will certainly register for the summer session in June/July.
Zoé has no fear of water she is like a fish, diving in, making bubbles, catching floating toys, using watering cans, pushing balls, straddling noodles, etc. It is so good for her body, even though at night she complains of back pain. I feel it will strengthen her overtime. Her neurological doctor told me 6 months ago how for Zoé, swimming must become a lifelong exercise. Using buoyancy and defying gravity to play and strengthen her body makes it so much easier for Zoé.
I took advantage of a few sessions to swim laps in the lap lane, though the temperature made it harder for me, just because it is easier to swim laps in an 81 F. or 27 C. pool. I also know that my body is weakening overtime. My hands, my neck and tongue get stiff and weak. I still go to Yoga three times a week, and go on long walk or hikes ever week.

On a different note, I felt very honored when Nancy, the SNAP coordinator, asked me whether I would be keen on sharing my blog with parents attending SNAP. Of course, our children don't have the same diagnosis, but we share the same journey.
It empowers me to know how many people read the blog. If I can share thoughts and ideas, I am delighted, especially if they can benefit from it.

So far for us, right now, it is a battle regarding the potty. I feel desperate sometimes knowing that Zoé cannot have bowel movements on the potty. She has to be on all fours, sometimes crounching into a ball, under a chair, in a small hole...almost as if her animal instincts came back, it is odd. As far as the peeing goes, that works, but we still have a lot of accidents.
I try not to make Zoé feel bad, but I must admit, sometimes it is really frustrating.
I guess patience has to be my new motto. Just wait and see. Let it happen.

I went on the Myotonic Dystrophy Support group online,last night and it was so eerie to see how our children all share the same look. They seem like they could all be cousins. They have the same mouth, none of them can really smile...just a constant reminder of what these sweet children have to face on a daily basis, and what the future holds for them and their parents.
We share the same journey, call it an adventure into self-discovery, empowerment, strength, dedication, and love, of course, for without it, we wouldn't be able to keep on.
We are the company we keep, we are one big family.

1 comment:

Shona said...

Starting to think about potty training for my little boy. I must admit I am not looking forward to it. He sometimes says he doesn't want to wear a nappy (diaper to you guys) he wants to go on the potty, however if I take him to it he never uses it.

Perhaps he isn't really ready yet.

Isn't it great that you have the support group and can find other families in your situation relatively easily. It wouldn't have been quite as easy before the internet. Do you have local people who you know who have Myotonic dystrophy in the family? Do you have local support group meetings?