My second child recently turned 20. It is quite a milestone, as we mark the occasion of parenting this very special, special needs young man. My husband and I marveled at two things:
- Our son’s awful genetic disease has spared his life thus far, and
- We haven’t killed each other and are still generally happily married.
It feels like another wedding anniversary for us. We were married almost three years when we had this son. Life changed drastically, in a much different way then when we had our first, typical child. It’s a wonder we got through those early years. The stress of a sick child, the unknown of what was wrong with him and then the grief of finding out about the life-threatening, chronic genetic disease that we had unknowingly given to him. Our different coping styles didn’t mesh at first – my husband was angry and I was in denial that this child’s illness would affect our lives as dramatically as it does. Our dream for a perfect family evaporated. There were many hospitalizations, doctor’s appointments, and a myriad of therapies.
In the midst of it all is a happy, sweet young man who loves us both unconditionally. He sees the good in everybody. He has no guile. On his birthday he proclaimed after opening his gifts at 7:30 am that “this is my best birthday ever.” While he does have a good memory, he lives in the moment and is content. He is not sullen or bored or unkind. He has a good sense of humor and is especially “pun-ny.” He loves his family and everyone in his world.
I walk through the days on eggshells however, never knowing when my son will feel unwell with one of the episodes which are the hallmark of his disease – Familial Dysautonomia. He feels nauseous and then starts to retch uncontrollably. Sometimes it is mild and sometimes it is severe. He needs medication to stop it, which makes him fall asleep for several hours so his body can reset. He can go months without an episode and I am lulled into a false sense of security that my life and our family’s days will unfold as I plan. And then it happens, usually with no warning. He will often fall into a cluster of episodes with no obvious pattern. From the moment I set eyes on him in the morning I am scanning for signs of a “crisis” as the events are called. If he is well, he is chipper and always asks, “How was your sleep?” My husband and I can sometimes tell he is “sick” before our son admits it, just by the look on his face. We must make him insane, constantly asking, “Are you okay?” He hates to disappoint us and ruin whatever the day’s plans are so he often denies it until we hear him retch or admits that his stomach hurts, which is the beginning of an episode.
If he emphatically says he feels “fine,” despite my doubts I drop him off at his volunteer job and keep my fingers crossed. I putter around, waiting for the call from him, lamenting silently that my life is put on hold. Sometimes he is right and sometimes I am. It doesn’t matter. There is no rhyme or reason. I rarely call his specialist for advice anymore as I am in the foxhole by myself. My husband is very supportive but when it comes to tweaking our son’s medications, it is a crap-shoot. I do my best to go with the flow but sometimes it is maddening.
I recently saw a friend who is about 20 years younger than me. Her eldest child was just diagnosed with autism at the age of 6 and naturally she was feeling distraught and overwhelmed. I explained that this is an especially difficult time as she has to grieve for the life she thought her child would have. “What about my life?” she asked.
What about her life, indeed. While I do my best not to let my disabled son consume my life and be my sole identity, my life rides the waves of his disease. It ebbs and flows with his health and happiness. Yes, this occurs with all children but it is more pronounced with a child who is so dependent on you for their daily functioning. It can be smothering and isolating, if you let it. I choose to be part of a large community that lifts me up when I feel down. When I step back and look at my life, I see mostly the good stuff. Savoring the positive things, no matter how small they might seem in the moment, is how I don’t let the bad times keep me down.
I am 55 years old. My mother died from cancer when she was 74. I am acutely aware of time and how the next 20 or 30 years could unfold. My goal is to get my son into a living situation that is not solely dependent on me and my husband and eventually on his siblings, depending on how long he lives. I experience gratitude and despair on a regular basis, but I strive to choose joy. I try to give my child and myself the best possible lives we can have.
If the eggs break, I prefer mine sunny side up.
It’s been a while since your last blog and I was happy to see this today and happy to once again see how incredibly well adjusted you are.
I can’t help but think of your mother and how you have inherited her very good sense and honest approach to life.