are busy people. It's no wonder. Once we have children they become more than
our "little darlings", they literally become the center of our
universe. When we're younger we think we have a lot to do and convince
ourselves that we are busy, yet I'd like to have some of that time today. As
our children become older we juggle their activities and doctor's appointments
and if we're lucky once in a while mom and dad get a little time to themselves.
OK, once in a great while.
Like tides, personal obligations and the constraints on our time rise and fall. There are
periods of normal busy and from time to time the stars line up and we know
we're in for a rough ride. We just look at this as part of life and patiently
wait for the next break.
My family recently went through one of these periods. I must say it was a bit
"self-inflicted", but somehow it worked out. It all started with a
few e-mails exchanged with Dr. Kathryn Wagner and ends with the PPMD Advocacy
Conference. Late last year Pat Furlong and I were talking about clinical trials
and clinics when she suggested my family look into the transition program Dr.
Wagner is developing at Kennedy Krieger. Matthew is almost eighteen and Patrick
will be sixteen later this summer. My sons are "aging out" of the pediatric
program. I contacted Dr. Wagner who I knew from my work on the Wellstone MDCRC
Steering Committee. We exchanged e-mails and talked on the phone before
deciding to schedule appointments for Matthew and Patrick the weekend before
the PPMD Advocacy Conference. This all happened in early November and seemed
like a great plan. We would be in the area and it would combine activities
therefore reducing expenses. It sounds good, right?
Alice and I went over the plans before I made travel arrangements and booked
rooms in Baltimore and Washington, DC at the end of November. Sometime in
January I called PPMD's New Jersey office to speak with Ryan. He was busy, but
Kimberly wanted to speak with me. She had a conflict in her schedule and asked if I
might help out with the DRCI meeting that weekend. There are a few people in
this world to whom I can't say no and one of them is Kim. I told her I didn't see a
problem, but wanted to check out our arrangements before committing. I looked
at out appointments for the clinic, confirmed the Advocacy meetings started
after the DRCI meetings and decided I would be able to fit it into the
schedule, so I let Kim know I was available.
As we got closer to February Alice admonished me for doing too much, but that
is my personality. I reassured her I will be there to help with the boys and
things will be fine. While I look at the glass as being "half full",
my schedule is always full!
The night before flying to Baltimore we fit several days change of clothing,
Matthew's Bi-PAP and supplies into a couple of large bags making certain we
forgot nothing and hoped for the best. Thursday morning we left Portland for
Baltimore flying by way of LaGuardia (My second least favorite airport after
Philadelphia.) arriving early in the afternoon. Alice and I have a boarding
routine down and the gate agents no longer flinch in Portland when we arrive.
They just let us do our job. I lift and transfer the boys as Alice breaks down
the wheelchairs then we toss our bags and smaller wheelchair parts under the
seats and into the overhead storage in plenty of time for the rest of the
passengers to board. At other airports the staff often insists on helping, yet
while they are figuring out how, we go ahead and just move Matthew and Patrick
ourselves. The boys are "old pros" at flying and to them it is still
I planned for us to take the shuttle to the hotel, but when we arrived the
woman at the counter tells me they can't get the wheelchairs in the van.
Apparently they stuff them so full of luggage there is no room. We opt for a
taxi and load our two boys (OK, young men.), one manual wheelchair that folds
and another that does not, the luggage and ourselves into a minivan taxi and we
are driven to the hotel. Obstacle one done and we decide we should take the
same type of vehicle to Kennedy Krieger in the morning.
I had originally planned for us to take Amtrak to Washington Saturday morning,
but the more I thought about it and after talking to Alice we decided it might
be better to leave Baltimore after our clinic appointments late Friday instead
of getting the boys up at four Saturday morning and rushing. After dinner I
called the hotels and changed reservations while Alice moved up our
reservations with Amtrak. Preparing the boys
for bed O put Matthew’s mask on for his Bi-PAP and turned on the machine. It started up, yet never engaged and started
beeping before shutting off. I tried
several times, yet it wouldn’t work.
Crap. Matthew doesn’t sleep well
without it, but there was nothing we could do and just packed it away before
turning in myself.
Friday morning we got the boys dressed and assembled our possessions before
breakfast. On the way to the hotel restaurant I checked
out and asked the hotel receptionist to call a taxi for us asking for a
minivan. Our appointments began at 8:30 and asked for a cab by 7:30. After
breakfast we waited at the accessible entrance for the cab until 7:50. I hate
being late, so I went to the desk to find out what is causing the delay. The
receptionist sees my impatience and immediately calls the company. Whoever is
on the other end of the phone says they have no minivans, so I ask for two
cabs. Ten minutes later the taxis arrived which we quickly load the boys, our
bags and wheelchairs for the short ride to the clinic. Obstacle two is behind
My sons already go to several clinics and we all wondered what to expect at
Kennedy Krieger. Arriving at their new facility I imagined we look like some
nomadic family as we pushed two wheelchairs and our luggage into the lobby.
Once inside I had a feeling it would be a good visit. We checked in, filled out
the obligatory of paperwork then were brought in for the boys to be weighed,
measured and have their vitals checked. Patrick was scheduled first to see the
Endocrinologist Dr. Germain-Lee. The atmosphere was pleasant and relaxed. We
first talked about Patrick's medical history before she asked about concerns,
speaking to both Patrick and me, then we discussed options. Alice and Matthew
were soon seeing Dr. Wagner. Patrick needed blood drawn which gave me the
opportunity to join Alice and Matthew as Dr. Wagner, the PT, OT, Social Worker
and others filed into the examination room. Dr. Wagner asked Matthew about equipment in
the home which led to Alice telling her about the Bi-PAP malfunctioning. Her nurse called the Pulmonology Department and
they looked over the machine deciding it couldn’t be repaired. While we were having our appointments they
called the companies and arranged to have a replacement delivered to our hotel
in Washington. Matthew was very relieved
and Alice and I were grateful for their help and were able to stay focused on
In addition to the usual discussion of present levels of ability Dr. Wagner
talked with us about maintaining, and where possible, improving function for
Matthew. Each clinic is different and I look forward to a new perspective. I
wasn't disappointed. We talked about different things we might do to maintain
Matthew's manual dexterity including strategies to ensure he is able to keep
helping himself as much as possible. After finishing with Matthew Dr. Wagner
talked with Patrick and Alice while I took Matthew to see Dr. Germain-Lee.
Lunch was followed by the physical therapist taking the boys into the pool to
demonstrate exercises. Alice and I videotaped the boys exercising then we spoke
with the PT about the exercises we hope to continue at the local YMCA.
After aquatherapy we asked the hospital valets to call a cab for us and they
were able to get a minivan for our ride to the train station. Our trip on
Amtrak was uneventful and we arrived in Union Station after the forty minute
ride then transferred onto the Metro. The hotel is about four blocks from the
Dupont Circle Station. Pushing a wheelchair with one hand while dragging a
rolling suitcase with the free hand is tricky enough, but Washington was
recovering from two large snow storms which made our efforts more challenging.
The sidewalks on one narrow street near the hotel were impassable, so we took
the boys on the street dodging the haphazardly parked cars and the occasional
vehicles trying to weave along the same street. We arrived at the hotel around
eight getting past obstacle three.
Saturday morning I got up early to get Matthew and Patrick out of bed and
dressed for the day. While I attended the DRCI meeting Alice and the boys hung
out at the hotel and watched the Olympics. I got back around ten after having
dinner with the DRCI members and we repeated this routine on Sunday morning.
The Sunday meeting ended at 1:30 in time for me to attend PPMD's Advocacy
session back at the hotel. Alice, Matthew and Patrick sat with me through the
meetings which ended around eight leaving us a little time to watch the
Olympics before getting some sleep for another big day.
Monday we had meetings on Capitol Hill with Julie Stuart who is a former
student and good friend of Pat Moeschen. We started with meetings for both New
Hampshire Senators. Our next scheduled meetings conflicted, so Julie had to go
to a House meeting with a member of Cornerstone and my family and I had a
meeting with Senator Susan Collins and one of her senior staffers. Going to her
office is like visiting a well liked relative or seeing a friend. Senator
Collins remembers a lot about our family and most of our discussions are
updating her on what the boys and our daughter Rachel have been doing before
talking about our Advocacy topics.
We caught up with Julie for our next meeting in a New Hampshire Congresswoman's
office before going to see Representative Michael Michaud from Maine with his
Senior Legislative Aide. Both Senator Collins and Representative Michaud agreed
to support our efforts. This completes our Monday visits, but I went back to
the Senate side of Capital Hill with Matthew to confirm a meeting with staff in
Senator Olympia Snowe's office. Matthew and I met Alice and Patrick at the
hotel to relax before dinner.
Dinner was at a local restaurant for all the Advocates and families.
Representative Doris Matsui spoke to the group about her interest in DMD
beginning with conversations she had with Julie Garcia and meeting her. This
led to the Congresswoman becoming a DMD Champion and her leading an effort in
the House for one of our issues. Pat Furlong presented the Congresswoman with
an award for her commitment to helping those affected by DMD. After dinner we
returned to the hotel and the next morning began the next round of meetings.
Tuesday we had our meeting with Senator Snowe's Health LA then a meeting with
Representative Chellie Pingree of Maine who assured us she will support our
efforts. Before our meetings I went to Cornerstone to get packets to hand out
to Senate offices from states where Advocates were unable to attend. I dropped off several packets and was able to
get quick meetings with Health Staffers in four offices. Many other families
did the same, so with some luck maybe we'll get additional Members to support
Finally done we head to Cornerstone's office and recapped our day with our
team. From here we headed to the Metro along with Dan Garofalo who volunteered
to help with our bags. We had dinner at the airport after checking our luggage.
We were tired, yet the end was in sight. Alice and I got the boys on the plane
for a direct flight to Portland which arrived just before 11:00. Our final
obstacle was over and by midnight we were at home and in bed. There was no rest
on Wednesday as the boys were in school and I was back to work.
I've been told hindsight is always twenty-twenty. Sure it was a lot to
undertake in a few short days, but in order to be effective we sometimes need
to extend ourselves a bit. Reflecting on this trip makes me tired, but I
wouldn't have changed a thing.