Moments in Life

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.

A little discomfort and joy!

Jon’s second semester at college has been rewarding and frustrating.  While Jon is on campus, things are a little easier.  Jon has a power chair that is stored on campus and he can navigate independently.  Jon doesn’t have a power chair yet permanently.   He can still walk and get in and out of a regular car, with a little help.  However, getting power chair of his own and an accessible van is extremely time consuming, especially if going through the state for any kind of monetary grant.   It seems to take months and months to get anything approved.  Because of this I always feel bad that Jon needs to rely on either me or his Dad to drive and pick him up.  My inner monologue usually is “I wish we had the power wheel chair and the van already; I could just throw the keys to one of his friends and say have fun!”  “What 18 year old wants to have his parents around all the time?”

Friday nights are usually late nights for Jon, he likes to stay at school and hang out with his friends and watch the basketball game.  Therefore they are late nights for me and my husband. A few weeks ago he came home early, and asked if he could attend the Nazareth Commuters Association outing.  “Mom, would you mind taking me?”   In my head I’m thinking: “Really, Jon you have to ask? Like I’m really going to say no?”  I answer out loud, “Of Course, Jon, what time and where am I going?”    Jon replied, “Great, Thanks Mom! I haven’t been in the commuters lounge for a couple of weeks, they seemed glad to see me and they said they had an extra ticket.  I told them that I would probably meet them at the bowling alley, but I needed to check first.”  I said, “Well, you better text back a let them know that you will be there.”  After a series of text messages it was decided that Jon would meet them at the bowling alley around 9:15pm. The group planned on meeting at the college and carpooling. I said “Jon, are you sure you don’t want to ride with your friends?” Jon’s reply “No Mom, it’s OK it’s just easier for me to meet them.”

As Jon was getting ready for his night out, I asked Jon do you want the manual wheelchair.  Of course he said no.   I was worried, again my inner monologue “What if he falls? What if he gets hurt, blah, blah, blah?”  However, since Jon is 18 he should know when he needs assistance or not.  So I didn’t voice my worry out loud.  We got to the bowling alley.  Some of his friends were waiting.  I had to laugh when a very tall muscular guy approached the group and said “Hey, Jon, dude, where’s the rest of you?”  Jon laughed and said “Well, one’s at school and the other is at home.”   “Are you cool with it?”  The guy said “Yeah, sure!”  Jon turned to me and said “Bye, Mom, I love you.”    That was my queue to leave and wait for his call for me to pick him up.   He called little after midnight to be picked up.    When I got there, a smaller group of his friends were waiting with him.    They drove together, but didn’t want to leave Jon there alone.  

I asked Jon how is night was during our ride home.  He said it was good.  The bowling alley had a shoot system so he could bowl without having to lift and throw the ball.  One of his friends put the ball on the machine and Jon rolled it down the ramp.  “I had fun! It made it easier for me to bowl.”   Just as I got out of the car to help him get seated, I heard the group laughing really loud, as if someone told a joke.  In my head I’m thinking I hope Jon isn’t the brunt of the joke.    I asked Jon about the laughing I heard.  He made me laugh when he told me about one incident that happened while they were waiting for me to arrive.  “Mom, there was this group of girls that arrived in a stretch limo, they were all drinking and smoking.” “One of the girls walked up to my group of friends and thought we were all really young looking, and asked how old we all were”.  She said “OMG, you all are soooo young looking, how old are you?”  The four people Jon was with answered with “22, 21, 20, 19.”  The girl looked and Jon and said, “How old are you?”  “Jon, said, I’m 18, yeah, I know I look about 13.”  The girl said “OMG, You are so adorable, can I give you hug?”  Jon didn’t answer right away, he was uncomfortable. The girl said “Oh Am I making you uncomfortable? Well, OK we need to make up a secret hand shake or something.”  “You are just too cute not to!”  Jon told me that the girl smelled of cigarette smoke and alcohol and he was taking a few steps back as she was invading his space.   One of Jon’s female friends looked at the girl making the advance and said “Back off, he’s my boy!”   Jon said, “Thank goodness for Kailey.” “I don’t think I would have gotten away from that drunken girl without her.”   He and l laughed about that all the way home. 

As Jon comes into his own, I need to accept that he is no longer my little boy.  He is maturing into a smart and thoughtful young man despite my worry and discomfort. I have to agree with Arnold Bennett who once said “Any change, even a change for the better, is always accompanied by drawbacks and discomforts.”

Learning to sail his ship

Ever since Jonathan was diagnosed with Duchenne, I’ve often wondered and reflected on what his life would be like.  I’m always surprised and impressed with his can do attitude.

As we looked at colleges and careers, Jon made the decision to live at home on his own.   I was worried that he was making his choices based on what his Dad and I thought.  When we discussed living away from home:  I said: “Jon you can live away from home if you want, we will just need to hire a personal assistant to help you get ready in the morning and at night.”   Jon said, “Yeah I know Mom, I’m not sure if I’m really comfortable with that option.”  I said “OK; think about it for a little while and let me know”.  One night Jon announced that his college applications would focus on colleges within commuting distance.  

During high school he had a close group of friends and enjoyed his high school years.  Some of his close friends went away to school. I wondered how he would make the transition into the college setting.  Would Jon make friends?  Would he be liked for his sense of humor and his bright mind or would he just be viewed as the guy in the wheelchair? Would he be able to keep up with classes? Would he find a work-study job and be able to work and keep up his studies?  Most of these questions all parents consider when their child is heading off to college and their own independence.  

Jon started his college career with a four day orientation.  Jon chose to attend Nazareth College which is a small private college that is 60% female and 40% male. Jon liked the ratio of girls to guys.  Jon was busy from 7:00am to at least 10:00pm for those four days. The schedule for orientation was enough to tire and overwhelm me.  However, he seemed to thrive with his new found independence.  At the end of each orientation day he arrived home with a huge smile on his face and said he really enjoyed his day. He used his manual wheelchair for orientation and the kids took turns pushing Jon to various events. We met with the Disabilities Office to make arrangements to store Jon’s power wheelchair on campus. He only uses the power chair to navigate campus.  A storage place was found on campus where the chair could be charged back up at the end of the day.

My worries about transitioning to college were really exaggerated. This was highlighted when my husband came home after dropping him off, and said that he met the Dean of Academics. My husband helped Jon pick up his wheelchair and get his book bag hooked onto it.  Jon took off without turning around to say bye Dad.  The dean was watching this like a slow motion movie and said to my husband “I just love seeing new students adapt to college so easily.” After a few weeks, Jon was pretty well entrenched in the college community.  He tried out for the Improvisational Comedy Club, he didn’t make it but enjoys going to the shows.  He was elected the Vice President of the Commuters Association, he joined the History Club.  He did have a difficult time finding a work study job, but did find one for the fundraising Phone-a-Thon.  

Jon was at home when he had his telephone interview for this job, I overheard some of his answers.  “My experience at Nazareth so far has been really wonderful.” “I chose Nazareth because I wanted to study Biology and I thought the sciences programs would be pretty good, since the college has a Ph.D. program in Physical Therapy.”  “I really like the campus, I have a physical disability and use a power wheelchair; I really like the size of the campus and it’s easy for me to get around.”  

Jon has made the transition to college fairly easily. He has gained some independence despite Duchenne.  Like Aeschylus, Jon doesn’t appear to be afraid of storms, for he is learning to sail his ship.  

Jon at his Freshman Seminar Field Trip