Traveling is often viewed by the "infrequent flier" as some wonderful activity filled with adventure. Whether by van, train or plane, my sons regularly log many miles. I suppose to an outsider, traveling is somewhat romantic, but add TSA foolishness, delays in airline service and the many other travel inconveniences and I see things a little differently.
My sons next regular appointments were at Cincinnati Children's Hospital Medical Center. Driving from Maine to Ohio is a roughly fourteen hour chore. My father grew up in Ohio and we took family vacations there each summer, yet riding in the back of a station wagon and later as an adult in our car is much different than navigating our hulking "two story" van loaded down with the boys' powerchairs and other necessities. While I have fond memories of our jaunts to visit family, I also remember how stressful it is and how crowded the roads are today compared to when I was very young. This is also the time of year most states are working on highways and construction traffic makes driving a real nightmare. As I get older I am less inclined to such lengthy drives, so Alice and I made arrangements with an organization that helps those with medical needs to fly to appointments. Our itinerary included a 3 AM drive to Manchester, NH for a 6 AM flight with a connection in Washington, DC finishing in Dayton, OH about noon. It takes about half the time needed to drive to Ohio without the other "fun".
I am an early riser, but 2:30 AM is bit much. Glaring at my alarm only gave me temporary satisfaction before I crawled into the shower which helped me more fully awaken. After I got out, Alice showered and I got the boys dressed, took care of nature's call and put them into their manual wheelchairs. Witnessing the "care" airline employees have shown to other people's powerchairs and other valuables we choose to leave them home. No breakfast and on the highway by 3:15, our journey is underway. Manchester is about an hour and fifteen minutes away and there's not much to see when it is pitch black. Traffic is light making the ride easier and soon we are in long term parking, a short walk/roll from the terminal. Once inside we check at the US Air desk with an agent who is far to chipper for this time of morning, but she is extra helpful and moves our seats from rear to the bulkhead up front. Some agents are oblivious, but this woman was just plain wonderful. We check our one bag and move to security. Another thing you learn after doing this a few times is to travel light.
I can't understand why TSA treats two boys with limited physical ability as a potential threat, but Matthew and Patrick were patted, prodded, swiped, tested and questioned as if they were Timothy McVeigh's cousins. Alice and I went through the line adjacent to the glassed in screening area the boys were being shaken down in to get our own "fair share of abuse" having our possessions X-Rayed as we walked bare foot through the metal detectors like the other lemmings. After getting ourselves dressed for the second time that morning we made our way to the gate.
Manchester is a nice small airport so we didn't have to take a tram or walk miles to the gate. Once there we talked to the agent who asked what help we needed getting on the plane. Alice and I told her we just needed to get on first and we would handle the whole deal. She offered to let us use a straight back aisle chair, but it is as comfortable as any other implement of torture, so we declined. We've done this often and have a routine. Alice and I get the boys to the door of the plane and if they are big enough sometimes inside the plane and I lift the boys into their seats as she breaks down their chairs and we put the seat backs and cushions into the overhead storage. We gate check the chairs which are available to us after landing. Now I'm not the "Hulk" and I can only imagine what the flight attendants think as I lift Matthew and Patrick who are close to my size into the plane down the spacious aisles and onto their seats. I think "fool" probably comes to their mind. It works for us and that's what counts.
Because Matthew has little trunk strength we use a Velcro strap to keep him in place in his seat. During the flight we loosen it so he can lean against the strap to take pressure off his backside. He is more independent in his powerchair with recline and tilt in space, so the next few days we will help him adjust as he gets uncomfortable. After a short flight we are in Washington and repeat the process, except the plane is on the tarmac and I have to bring the boys up the folding plane stairs. They offer the ramp which isn't wide enough for the boys' chairs and the railings interfere with my ability to carry them so I muscle them up and in. Another short flight and we are in Dayton. Dayton is another great smaller airport and we have a jetway to exit making it a lot easier. Everything is close by and there is no need for a shuttle to pick up a rental car. After collecting up our bags we picked up the rental car and I hoisted the boys in the minivan and stowed our luggage for the trip to Cincinnati.
Over the next four days we visited PPMD's Middletown office and made two days of appointments at Cincinnati Children's. Matthew and Patrick had the full battery of tests and follow-ups including cardiac MRI, pulmonary function testing and assessments for the Utah Dsytrophinopathy study. The next evening after the boys' appointments were finished we went through the airport shuffle again.
Dayton security was more considerate with the boys and treated them more as young men then as potential threats. It seemed to take longer getting home than going to Ohio, probably because we were all tired and wanted this to be over. Our flights were smooth and we had the same conversations with gate agents about how we would get on and off each plane. Once back in Manchester we grabbed our bags, loaded our boys in the van and made our way home. It was really nice getting home and sleeping in our own beds.
We make these trips several times each year. It is necessary to travel to get appropriate care for our sons, yet it can be stressful and it is always exhausting. I try to keep in mind the importance for our travel and realize most people in the travel industry have little contact with people who have the type of disability as my sons. Occasionally we encounter people who really care and take time to make things work. I understand it might be difficult for others who don't know how to help, yet simply letting us do our jobs is all we ask. What surprises me most is how well my sons travel and maintain a positive attitude through the whole ordeal. The resilience of children is remarkable. The next trip is in October when Patrick and I go to Florida for the University of Florida MRI study. At least it will be warm!