It’s August already!
I haven’t written a blog post since May.
It’s been a very busy summer for us.
I started a new job. My daughter had a wonderful experience for 6 weeks in
Australia. Jon completed a summer class. Jon and I traveled to the Fort Lauderdale for
the Parent Project Muscular Dystrophy Annual Connect Conference. He was a panel
member and provided his perspective on being a trial participant. We took a very quick trip to NH to visit some
family and friends. Jon has been using
the summer to adjust to having his own power chair. He will be able to navigate
campus and use the equipment in his biology and chemistry labs much easier. Jon’s chair is a Permobil c300 with the tilt
and the elevate feature.
Jon is also beginning to learn how to drive. There is an organization in my area called
DriveOn they teach disabled people how to drive safely. They have a modified
van with the electronic modifications like the kind Jon will need in his own
vehicle. Jon is excited about the
prospect of driving. He was able drive on the road with his driving instructor
this week using his wheelchair in the instructors modified van.Jon shared his driving experience with his friends when they met at local ice cream parlor. The summer will be coming to end soon. Jon’s friends and his sister will be going back to their perspective colleges in a week or two. This past weekend was low key, pizza, and wings. My husband and I watched the movie a “Time to kill” while Jon preferred to surf you tube and play some video games. His sister was out with a group of friends.
The low key evening turned into a very late night for Jon and my husband. They watched the Perseid Meteor shower until early morning. Jon wrapped in a blanket tilted back in his wheelchair, and was enamored watching natures light show igniting the night sky. My husband was equally thrilled he was able to watch the night sky with Jon. This morning as we started our day I enjoyed listening to both of them discuss how beautiful the night sky looked and reminded me of a quote Rose Kennedy “Life isn't a matter of milestones, but of moments.” I’m extremely gratified to be able to share these moments with my family.
Yeah, summer flies by so fast. It's great news that Jon is learning to drive on his wheelchair. Indeed, a modified van is a good choice for people in wheelchairs. Vans like this permit them to go to places with ease, and best of all, take full advantage of their freedom.
ReplyDeleteI totally agree with that comment. It is the little everyday moments that make life wonderful.
ReplyDeleteHello. I love your blog, it fills me with hope. My son has just been diagnosed with muscular dystrophy although we don't know which kind yet. They are doing genetic testing and we have to wait until around Christmas time to find out, and if that's inconclusive they'll then do a muscle biopsy. When I say "they" I'm referring to Great Ormond Street Hospital in London. We live in the south of England, and my son is just about to turn 5... he doesn't really have any symptoms other than tiredness at the moment. And large calves. We've had a long road to get to this diagnosis already with first barking up the wrong tree thinking it was his liver (high AST/ALT levels were found in a blood test).. but the liver consultant did a CK test and referred us to neuromuscular. Dash doesn't have trouble getting upstairs, and isn't doing the Gower manuveur. He also won two races at sports day this past July. It's definitely a difficult time not knowing what sort of MD he has. I liked something you said about being strong because you have to be. Coming to terms with the injustice of it all is huge. I just wanted to write to you and say that I'm thinking a lot about all this, and how much it requires of us as mothers - and how I'm looking at you as a role model right now! Thanks for sharing everything. I wish you well! x
ReplyDelete