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.”

2011 Graduation!

This month has been extremely busy!  Jon has fully particated in the senior events this past month leading up to graduation. Senior Ball, Senior Bash and the Senior Convocation Ceremony.  Jon has always had a fighting spirit.  He made a decision early on not to let Duchenne get in his way.  We had an issue with the Convocation Ceremony causing Jon not be able to stand from the seat he was sitting in.  The chairs in the auditorium have moveable seat bottoms, that are not stationary.  As a result of not being able to keep the seat flat he couldn't stand by himself to go up and recieve his award when his name was called.  The presenter couldn't see what was going on so she finished her presentation. I leaned over to my husband and said, "Jon can't get off the chair."  The principal was sitting close to Jon and figured out what was going on, Jon was helped to a standing position and was called up on stage at the end of ceremony to accept his award.   

As a result, of this bump in the road, my husband and I met with the high school administrators to discuss graduation preparation.  As we were discussing the preparations. I could hear Pat Moeschen's voice in my head telling a story of a discussion he and his father had regarding using a wheelchair.  "If I'm sitting down I'm disabled, If I'm standing up I'm not."  Jon has a very similiar attitude regarding using a wheelchair.   Jon usually won't use a wheelchair.  As I asked the school administrators questions regarding how the ceremony was going to work, I could hear Pat's voice again in my head describing what his father said  to him regarding the use of the chair "Shut up and just get in the damn chair; we will be able to do a lot more stuff and have a lot more fun on this trip, without you whining and me wanting to destroy you, because you have to rest every 15 minutes."  As a parent, I could relate to Pat's Dad at that moment. 

As my husband and I further discussed the details of the ceremony with the school administrators, we decided to come up with a compromise.  Jon would use his wheelchair for the processional, and sit through most of the ceremony.  When it was time for the presenting of diplomas he would be pushed over to the stage area where he could stand and walk accross the stage to receive his diploma and walk back to his chair. We discussed who would push Jon into the ceremony, the administrators said "We won't have a problem finding a teacher, they would all probably fight for the chance; Jon is really a likable guy and he will be missed next year."    When my husband and I came home from the meeting we spoke to Jon regarding the chair.  Jon's reaction was typical, "Mom I can walk in with eveyone else."  I said "Jon there are 350 kids in your graduating class.  You will hold everyone else up during the processional. Do you want to fall in front of 5000 people and have someone lift you up in front of all those people?".  His reply to me was classic Jon,  "OK, I will use the chair, but I don't want my Mom or Dad pushing me, I'm friggen 17."   I said "No problem, we won't be pushing you, one of the teachers will push you over to the stage area and lift you when it's time for you stand."
  
We scheduled a private rehearsal so Jon could practice walking accross the stage wearing is Cap and Gown.  It went fine without any problems.  We wanted to make sure the gown didn't cause any issues with his gait. My husband went with Jon to the rehersal with all the other kids, so we could make sure that the plan would work and we could show the teacher how to lift Jon.  Both rehersals went fine.   Jon and the school administrators were comfortable with how things will work out.

I asked Jon if he wanted to decorate his chair in the school colors. Jon said yeah, but I don't want anything too childish and Mom don't go overboard OK." I said how 'bout the FIRST Robotic team 1511 Rolling Thunder colors. His chair already had red underglow lights on it from other FIRST Robotics team events. He agreed. The arms and the back had red camo. On the back panel we put red and black graduation caps. The wheel spokes had red and white streamers threaded through them.

Jon the graduate and his chair where now both ready for graduation.  Graduation went off without a hitch.  When Jon's name was announced he walked accross the stage to a huge cheer from his classmates and the people in attendance!  His classmates showed Jon how much he inspired them.  

Jon has a busy summer planned.  Between the medical visits to Toronto, Utah and Gainsville; attending the PPMD conference and attending Double H camp, Jon plans on starting to write his Sci Fi book series and get ready to study Biology at Nazareth College. 

Jon like Theodore Roosvelt has always held to the attitude of "Believe you can and you're halfway there."