The voices in my head are back, “Kathy, you are not up for this anymore, be honest and just tell Paul and Patrick that you can’t do it; you’re getting too tired to take them on these trips anymore.” The other voice replies, “But I have to give them a vacation, how can you deny them a summer vacation, geez, they can’t walk, they can’t eat, it’s hard for them to breathe, what kind of mother would do that!”
I am about to leave for NYC from our Connecticut home with my husband Walter and our sons, Paul and Patrick. Paul and Pat have Duchenne Muscular Dystrophy, which has laid to waste most of their muscles. Paul is 29 and Pat is 26, and a nurse is with them now for the morning respiratory treatment. Walt and I have time to adjust our bodies and minds to the work ahead. We start with coffee and books, tucked away in our bedroom. Away from the sounds of breathing machines (ventilators), suction devices, nebulizers, and the percussion and cough assist machines that clear their lungs.
9 am and time to go over the list I keep, so I dare not forget anything. God forbid I forget that extra tube for the ventilator in case one gets a hole in it. The thoughts are racing through my head now as I try to think of every eventuality and possible crisis that might occur and what I need to bring to prevent it. I feel so responsible for life and death somehow. My friend Deann calls me MacGyver for being so ingenious at fixing things in critical situations. My use of common household items such as duct tape and rubber bands have saved lives.
Well, off we go, every possible piece of machinery crammed into the old 89’ Chevy van. We will stay in a hotel near our families in Teaneck, NJ. We have many volunteers scheduled to help us throughout the mornings and evenings after our days spent in NYC.
The next day we are off and running! We’re trying to hurry the morning medications, respiratory treatments, and tube feedings that usually take hours in an attempt to make it happen in half the time. My Mom and Dad would be so proud of us. My dad was father to the 12 of us and a Port Authority cop. Sergeant John Lyons prepared me well for this life I have landed in. He ruled with supreme authority, organizing all of us in our Saturday morning sweep of the house.
Our first stop is MOMA for the free Friday admission. I know right away, it’s not going to be a good driving day for Patrick. He’s struggling to manipulate the tip of his thumb on his mini joystick, which propels his electric wheelchair. He can barely get his chair to move. We make adjustments every few minutes all through the museum to keep him moving when he finally admits to having jammed his driving armrest in a doorway earlier at the hotel. I want to scream but control myself to a simple muttering, “Why didn’t you say that hours ago!!!!” And so with a mere 10 or so small adjustments to armrest, thumb, elbow, shoulder, and joystick, it seems only slightly better. By now, it is time to leave the museum to get over to the Broadway musical, Spring Awakenings. Patrick has used so much energy trying to drive his wheelchair that he is now having respiratory distress as we are going out the door. I ask Pat to stop before we leave so we can move to a clear area by the exit and help him, but he is on a mission to breathe and cannot listen to me. As usual, I have prepared for every eventuality, so I have Patrick’s ventilator with us. The folks on 54th St. did not seem to notice us at all as we feverishly set up the vent and battery, untangle wires, put Pat’s mask on, and get the wheelchair to recline. We are now in control of the wheelchair with the rear joystick, and we begin our trek to Spring Awakenings, long-distance travel for us. We don’t steer as well as Pat, and so we weave dangerously through the crowded sidewalks.
We arrive, Hallelujah!! And so as the lights go down, we try to steady our heart rates and enjoy the show. But the day has taken too much of a toll on Walter and me, and we struggle to concentrate. Our sons use their wheelchairs to help them to breathe by rocking their chairs back and forth. I was sitting with Paul, and an usher came up to me during the first act and said in a desperate whisper, “he’ll have to stop that rocking,” and I assure her that he cannot; it helps him to breathe. Oh brother, I think, what next. Well, I did not have to wait too long when I hear a loud beeping coming from across the aisles. I know immediately that Patrick’s ventilator battery has died. I race over to stop the beeping before we get bounced by the same usher. Thank God Patrick has had enough rest and can come off the ventilator at that point. Try to relax, Kathy, I coach myself as I return to my seat. Soon it is almost over, and my husband comes to tell me he is going to get the van. He has never left anything before it is over, so I know he is stressed to the max. I go over to check on Patrick when the usher comes racing over to me and says even more desperately, “Something is wrong with your other son. He is spinning in circles!” I race across the aisles to find Paul spinning out of control! I shut his chair off and ask what happened. “My hand got so cold I couldn’t drive and lost control,” Oh God, help me!, and so I blow on his hands and rub them to get them warm enough to drive his chair.
The fun is not over yet! As we leave the theater, we discover there is no curb cut. Paul and Patrick have to maneuver to the end of a very long NYC block to get down to the corner curb cut and have to drive in traffic to get back to the van.
And so we come to the end of the story. I am so tired I don’t know how I was able to continue the job as we get back to the hotel and, once again, start in with meds, feedings, and respiratory treatments.
All in all, it’s always worth it if our sons have enjoyed themselves.