With each passing day Alex’ illnesses were becoming more complicated. As a mother it was my duty to protect him, to help him to be the healthiest boy that he could be and allow him all of the experiences that he deserved. My thoughts are not always popular with other parents in the same situation. But I do not regret one decision that was made on his behalf. Although, that does not mean that I did not feel some overwhelming guilt at times blaming myself for allowing this procedure or that surgery. Isn’t it true that we all play the ‘what if’ game? Now, when I am able to look at his life as a whole, my husband and I made the most informed medical decisions possible at the time.
The first time that my limits, or lack of the same, on Alex’ activities came in question was at a second grade Olympic Games Day. He excitedly signed up for a running competition. Of course we signed the permission slip. Yes, he did need his inhaler and he was one of the last ones to come in. But he won a ribbon for participation that made him proud. It was when a teacher took it too far and demanded that he run around the playground until he was told to stop that raised a red flag on his competence to join in physical activities at school. He did not have his medication with him (a rule at the school) and eventually fell down beginning his second pass around. After that, Alex was excluded from many of the PE exercises.
When he was at home he ran and played with all of the other children. He rode bikes, skateboarded, ice skated, climbed trees, and hiked taking time out when necessary to use the inhaler or take some medication. As he was getting older, his requests came with more dangers attached. There were weekend stays in the mountains with his best friend’s parents cabin, overnight trips with the band, a two week student exchange in Mexico, and local parties. The decision to permit these outings is difficult for any parent. But when faced with the fact that your child has physical problems, it is made more challenging. Alex was in Junior high school at that time and we chose to make a pact with him that we would attempt to say yes to as many things that we could as long as he never was without all of his medications, the parents of the other children knew his problems, and carried a paper with emergency numbers including his doctors’ phone numbers. Yes, again. He did end up in the hospital for an endoscopy at times, even for a particularly rough asthma attack. These things happen. Alex remained compliant with our rules.
High school was a whole different world. The opportunities that we would never think of stopping our older son from doing now was facing us head on with Alex. First, there was driving. That is giving up so much of a parent’s control. Well, we did make that pact. Ok. He got his driver’s license and his uncle’s cute blue bug. I am watching the video in my head right now of that day. His smile went from ear to ear. Then there were cruises with the school, girlfriends, driving himself to the doctor’s appointments and allergy shots, his trip to Europe with the senior class.
Not long after his graduation, Alex began applying to colleges everywhere in the United States. He had played the clarinet since the sixth grade and he wanted to continue his education in music. This was tricky for us. We knew that there would be some time before he would be accepted to a school and we would use that time to prepare ourselves, and him, for this transition. My husband and I made it clear to him throughout his life that he could do whatever he wanted to do. He believed it.
While Alex filled out school applications and attended auditions, we were preparing in other ways. The most important thing on our list was to make sure he had a required surgery before he left. He had GERD since he was nine years old. By now he had been through a multitude of endoscopies for dysphagia (when food would get stuck in the esophagus), ulcerations causing bleeding with blood transfusions, and biopsies to watch for any changing of the cells.
The next was to have all of the medication for the time he would be at school. Alex was diagnosed with narcolepsy when he was seventeen. He had been driving home when his car went off an embankment of the 118 Freeway. Manuel and I were told by the police that they had never brought up a single person alive from that area. They also informed us that Alex was not drunk or on drugs. Of course, we knew that. He had been tested for sleep apnea three times without a diagnosis. Now he was sent to a neurologist to be tested for narcolepsy. Finally, we had an answer for his sleeping disorder. This meant another drug, Ritalin, in his laundry list of meds to take. He would also have to lug his breathing machine with him wherever he went, along with all the liquid medications necessary for the use of the machine.
The letters started coming in. Three colleges had accepted him. The one he chose to attend was The Boston Conservatory. When asked why, he would tell us it was because they only chose two clarinetists that year, and it was the best school to go to for what he pictured his future to be. But, I knew that his girlfriend had her own letter of acceptance from Brandeis University that was just a train ride away. Well, it was done. He did his part, now it was our turn to do ours.
The surgery was scheduled. We bought the extra health insurance for him at school made sure that he would have a private room downstairs to accommodate his ‘tilt-a-bed’, the breathing machine and all of the paraphernalia that he required. That was almost unheard of for a freshman.
The day came when Alex and I boarded the plane to see him off to start his next chapter of life as an adult. I left behind some relatives and friends (even some acquaintances) in disbelief that we would not only approve of his move to Boston, but to encourage him and help him in every way we could. These were his hopes and dreams for his future and we loved him enough to let him go to be the person that he was meant to be.
The one thing that you learn along the way is that It never gets easier. There will be many more choices and decisions to be made.