I am happy to share my latest article. Enjoy!
I am happy to share my latest article. Enjoy!
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:
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.
My middle-aged body is slowly wearing out from wear and tear. I had a triple arthrodoisis (major foot surgery that fuses three joints in the foot) three months ago to fix arthritis and pain which was limiting my ability to walk. I was not allowed to bear weight for 10 weeks so I got around on a knee scooter. It was my right foot, so driving was out. While a nifty invention, my hands hurt from leaning on the scooter, my knee was chafed and my back hurt. To use my teenage daughter’s favorite phrase, I was a hot mess.
Not being a kvetch by nature, I was sick of myself and pretty sure my housemates were sick of me too. Being a stay-at-home mother, I run the household and keep the trains running on time. Since it wasn’t emergency surgery, I was able to plan ahead for rides, meals and help around the house. To my surprise, the household ran relatively smoothly as I directed family life from the couch.
I would be remiss if I didn’t appreciate that my confinement wasn’t life threatening or permanent, for which I was grateful. So while I had anxiety about the surgery and recovery I was mindful that I wasn’t “sick” which helped keep it all in perspective. I had surgery, chemotherapy and radiation for breast cancer in 2010 so I was well aware what an existential crisis feels like. This was merely a big, fat nuisance.
My dignity definitely took a hit. Dependent on my husband to get in and out of the shower, I developed a new appreciation for my privacy and independence. Our morning ablution schedule became intertwined. It became a joking power move where I would meekly ask, “Could I take a shower now?” and he would bark like a drill sargent, “You will shower when I tell you you can shower.”
Obviously, a sense of humor was key. Otherwise how could I tolerate hoisting myself up and down the stairs on my rear end or on my knees? My sister came from out of town to help nurse me and found my scooter riding so hilarious that she made a video. Our friends found it amusing and I wondered aloud if it could go viral. My kids assured me that it wasn’t that funny. Now, if I had fallen over, that would have been a different story.
I felt a little disconnected from my kids and my husband. Without the parallel talk time while driving and my going to bed early, they were left to deal with the logistics of their lives. On the one hand, it was a welcome break from all of the mental and physical juggling. On the other hand, I felt a little left out. As I recovered and could be more engaged, the kids resumed being normal teenagers and taking me for granted. I took comfort in remembering something Lisa Damour wrote in a 2016 article in the New York Times: “Happily, the quality parenting of a teenager may sometimes take the form of blending into the background like a potted plant.” On a knee scooter or on the couch, I could excel at being a potted plant.
I developed a whole new appreciation for physical therapists. I saw the surgeon only sporadically so the physical therapist really was my cheerleader and expert regarding my progress. Mine was a guy named Ken, a few years older than me. I looked forward to my twice weekly sessions. During the time when I couldn’t bear weight, I would lie on the table while he massaged my foot, iced it and used electrical stimulation – all without asking anything in return (other than payment.) I could dump all of my frustrations about my recovery on him and joked that he became my best friend.
I tried not to be a kvetch but I know I wasn’t always successful. I actually developed callouses on my hands from gripping and pushing down on the scooter and they would fall asleep at night so that I began to worry that I was developing carpal tunnel syndrome. I felt like I was playing a bodily game of “Whack-A-Mole,” fixing one problem as another one popped up. I confess to having a pity party or two. I am human, after all. My girlfriends were great shleppers and listeners, helping me keep my sanity. I was grateful that my confinement was in the age of Netflix. Don Draper and his crew of “Mad Men” kept me company as did the wacky antics of the gang at Dunder Mifflin in Scranton.
The day came when I was given the green light to drive. I hopped in the car and headed to the bank with the windows down and the radio blasting. I felt like a 16 year old with a new license. The freedom was invigorating. My fantasy was shattered when I hobbled through the parking lot, like the middle age, debilitated woman I was. But in the car, and sometimes in my mind, I’m 16!
Recovery is complete and now the serious rehabilitation begins. Ken, once my masseuse and psychotherapist, is now my slave driver. “You mean I have to get off the table and actually do stuff now?” I asked him. I long for the days of passive physical therapy. Was the surgery worth it? Time will tell. Determined to shed my crutches and resume my active middle age, I will push forward and back out into the world. One step at a time.
Has this ever happened to you? One of your children is watching something on a screen that seems questionable to you. You ask if it is appropriate for them. They assure you that, yes, it is appropriate.
“Oh. Okay,” you say.
You know they say this because they want you to go away and leave them in peace. You want the same thing, so you choose to believe them because sometimes you don’t feel like taking the time to investigate if it’s truly appropriate. Sure – I can count on my child to know what’s appropriate and what’s not, can’t I? The kids and I would agree on certain things that are clearly not appropriate, such as highly sexual content or gory violence – they wouldn’t want to watch these things anyway (not yet, at least.) It’s all the other things (like bad language, mature themes, silly reality shows) where the line is not always so clear.
Sometimes things are inappropriate but in the opposite direction – not mature enough. Take for instance my 16-year-old son with special needs. He has a penchant for watching shows that some might say are too young for him. I used to tell him he is too old to watch these shows.
“But I like them,” he told me.
Sigh. He likes them. Who am I to force him to watch shows that he doesn’t really get or enjoy, just because they are more age appropriate? For me, there’s a fine line between expecting him to act his age and allowing him to be how God made him. Where is the perfect balance? I’m always looking for it.
My daughter recently reported that this brother was watching “Family Guy.” Oh good, my husband and I thought – that’s semi-appropriate for a teenage boy. Then she told us that it was really a cover for him to watch a children’s show on the computer – he too clearly understands the whole “It’s Appropriate” game. Too bad this cognitive ability doesn’t actually transfer to age-appropriate television for him, but oh well. He did participate in a recent “Simpsons”-fest with his cousins, keeping him somewhat in the adolescent TV loop.
My daughter chastised me for allowing her brother to watch “baby” shows.
“Really? Do I need a critique of my parenting from you?” I asked.
Let me just say that she loves “Dance Moms” and God-knows what other shows that some may say are inappropriate for an 11-year-old girl. It’s amusing to me that my youngest thinks she is the maven of appropriate material. When she was nine she picked the song “Mean” by Taylor Swift to sing in a recital. It’s a great song. We both thought the tune was catchy but neither of us paid much attention to the words. I just thought she was so adorable. As I sat there watching her, I realized the song is about an abusive relationship and my stomach dropped to my toes.
Maybe not my best call in this grey area we call parenting, but the world didn’t come to an end. The video of her singing still makes me smile to this day. Is that really so inappropriate?