Walking on Eggshells

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:

  1. Our son’s awful genetic disease has spared his life thus far, and
  2. 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.

Solitary Confinement

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.

Good From Far

I find it amusing when parents preface a complaint about their child with, “I mean, I love my kid but…” I find this disclaimer unnecessary because I believe it is implied by virtue of birth (or adoption) that a parent loves their child. Let’s be real though – sometimes it’s hard to love them to the moon and back.

There are so many articles or “list-acles” about how to raise perfect children and be perfect parents and perfect families. I confess that my eyes glaze over when I see an article that tells me the ten things I need to do to raise respectful, moral, interesting, hardworking, non-entitled, you name it kids. While I value expertise and seek it out when needed, I wonder what happened to good old common sense and listening to your gut? Sure, my gut may not have a huge social media presence but it’s gotten me pretty far.

The oldest of my four children is almost 21 and a junior in college. We happily made the transition from being his supervisor to his consultant. However, I find it a bit stressful when he comes home for breaks. Suddenly I have to see his comings and goings, notice his grooming habits, worry when he is out at night. I appreciate that he tries to spend time with our family but I know that he prefers to be with his friends. I understand too that he doesn’t appreciate me asking too many questions or giving unsolicited advice. I try to keep my thoughts to myself but am not always successful.

He recently went abroad for the semester. We are thrilled he has this opportunity and he is excited about being in a foreign country and meeting new people. Truth be told, I am happy he is away. I have noticed that the distance between us allows me to see the best in him. He calls when he wants to talk so we have interesting conversations, as opposed to me trying to drag information out of him. I admire and appreciate his independence and adventurous spirit. I am reminded that he is a kind, sweet, curious and outgoing person. I hope the distance allows him to see more of my virtues instead of a nagging, intrusive mother.

I realize I will not want my children to be far away forever. When they get married and have children I can only imagine it would be nice to have them nearby so we can be a part of each other’s lives. But I am learning to appreciate each stage of parenting, from both sides. My widowed 81 year old father, who lived nearby for most of my adult life, moved to Israel three years ago to begin a new life for himself. He remarried and has an active, rich life. I am delighted that he has interests and a life separate from mine. We can enjoy each other during visits and in phone calls and not be irritated as frequently by our quirks.

I don’t mean to say that I prefer to avoid the underbelly of life. It is part of what makes life real and interesting. Instead, I appreciate the breaks and find sometimes that distance truly makes the heart grow fonder.

Well Nourished

My late mother, in spite of living a healthy lifestyle, suffered from many maladies as she got older. As I drift through middle age, I feel like I am following in her footsteps as I slowly fall apart.

My recent physical failing is not life-threatening, thank God, but skeletal. A lifetime of flat feet has apparently led to arthritis in my right foot and ankle which translates into chronic pain. While the problem has been simmering, it declared its permanency in my life last summer. After living a few months in denial and avoidance, I began the task of figuring it out.

I tried physical therapy, orthotics and bracing, which didn’t help. An MRI report revealed ominous-sounding language, although it was hard for me to decipher. After the first doctor recommended surgery, I began my unofficial residency in the sub-specialty of foot and ankle problems. I learned that having flat feet can cause a deformity that ruins the “tripod” position of your foot- which refers to three points of contact that the bottom of the foot makes with the ground. So my tendon has slowly torn, my arch has collapsed and I have developed arthritis from my foot becoming so poorly aligned. Some doctors think I should do a tendon transfer to realign my foot and fuse the painful joint on the outside of my foot. One doctor suggests a “triple fusion.” There are other little things that would be part of some surgeries, such as taking bone marrow from my hip to help the bones fuse, a tibial bone graft, as well as releasing the Achilles tendon. All of the surgeries are a big deal in that it takes about 3 months to recover, with no weight-bearing for 8-10 weeks. Clearly it is not for the faint of heart. It is my right foot so I will not be able to drive for a while.

I have wrapped my mind around needing surgery and the long recovery. I just want to make sure that I have the best possible outcome. I had never given much thought to the amazing, intricate foot and ankle before. Just like when you are focused on anything in your life, you begin to notice it all around you. In fact, you can’t not see it – like noticing other bald people during chemotherapy or noticing front doors when you are in the market for a new one. Now I am totally focused on people who seem to be limping although I have to restrain myself from speaking to strangers. I wonder if they are before surgery, after surgery, or taking a pass on surgery.

After seeing a few specialists, my head was spinning as each doctor recommended surgery, although with no clear consensus. Remembering my late mother’s medical decision-making strategies, I asked for the office notes after each doctor’s visit so I could compare their recommendations. My goal was to figure out which procedure/doctor combo could  achieve the best outcome, which for me is no pain and the maximum normal use of my foot and ankle.

Never having really collected or read my own medical records, it is a bit jarring to see yourself described in medical-speak. One doctor’s general impression of me was as a “well nourished” woman. Oof, thanks doc. I mean, I really do try to eat healthy – thank you so much for noticing. I took my dog to the vet soon after seeing that note. She said my dog is a little overweight but nothing to worry about for now. I said, “Pardon me, Doctor – my dog is well nourished, not chubby.”

During this time, I decided to have what I believed was a benign cyst removed from underneath my chin. I had shown it to my oncologist and internist over the years so I wasn’t really worried about it but it bugged me so I finally went to the plastic surgeon. She thought it looked a little unusual for a cyst and recommended it be taken out. The results came back as a benign “fatty growth.” Or as I told my husband, in my case, it was a “well nourished growth.”

After consulting with a dozen doctors and discussing my foot ailments with anyone who will listen to me, I plan to have surgery at the end of January. My hope is to return to my active lifestyle and get back outside on long walks with my dog. We both could become a bit more active and a bit less well nourished.

 

 

The Free Ranger

My 19-year-old son did not graduate from high school last year with his peers. Instead we made the decision to keep him in the public school system until he is 21. Ben has a genetic disease called Familial Dysautonomia which affects his cognitive and physical abilities. College is not in his future and we thought it would be best to utilize the public school/county services as he begins the next phase of his life.

Contemplating this next chapter is so much harder than with my typical children. While they may have an inkling of what they want to do when they grow up, Ben truly has no idea. I don’t think he can visualize his future beyond the present and would probably be happy living at home for the rest of his life. So besides taking care of his physical health, which is no walk in the park, I now am responsible for imagining his future. Sometimes this feels like a crushing responsibility.

We were elated to arrange an “internship” at our local Jewish Community Center’s preschool where Ben will help in a classroom of 4-year-olds from 8am – 10:30am. The high school Transition Counselor travel-trained him to ride a public bus from the JCC to his high school for some afternoon classes. Ben has gone to camp at the JCC since he was 3-years-old so it is a safe, comfortable place for him.

It’s still a little terrifying. There is no nurse at work, like there is at school. We put together a plan so Ben can take care of his daily medicine and g-tube feeding before he leaves the JCC. If one of his health episodes arises while at work, we taught him how to handle the situation. This is a huge step in his self-care, heightening his body awareness and giving him the ability to take care of himself.

I have zero concern about Ben liking the work or his behavior in the preschool classroom. He is sweet and thinks the little kids are “adorable.” Ben gives me daily reports about what they did and what they had for snack. He said he helps the little kids with activities and clean up.

The bus ride definitely gave me pause but I was excited and fairly confident that Ben could do it. The travel trainer was a careful professional who thought of things that I had never really contemplated for Ben, much less my typical children.

She said, “Ben said that he has never discussed safety in the community with you.  Not sure if this was an accurate statement, but he seemed surprised that someone on the bus might want to take his cellphone, ask for money, appear to be drunk or on drugs, looks a bit sketchy, etc.  He was unsure how to respond when discussing ways to stay safe. Have you talked in detail with him about this?  What about if there is an emergency (such as weather related or a terrorist attack)?  Have you discussed a family emergency plan?”

Clearly I have failed as a mother. I have inadvertently sheltered Ben as I have been so focused on keeping him healthy and happy. I haven’t been completely negligent but my “safety” focus was on his personal space, i.e. “no one should touch your private parts, etc.” We have always handed Ben off to another responsible person or institution who was looking out for his well-being. This is a new level of “free-ranging” that we have not experienced with our most vulnerable child. I taught my other children many of these things but they also use their intuitive senses to pick up danger in the world around them. Rather than beat myself up, the teaching for Ben begins now – it’s not too late. He has learned to always sit near the bus driver who he can ask for help if needed. With his phone in his pocket, Ben has become aware of the people and places around him. Yes, he has a little fear but no more than a typical person. New things are exciting and a little scary.

But a family emergency plan? Does everyone have these? I don’t recall one from when I was growing up. I hadn’t really thought about how to instruct my kids in the event of a disaster or say, a nuclear attack. The only thing that comes to mind is something my smart aleck uncle told me when I was a teenager. We were sitting on my grandmother’s apartment balcony and I wondered aloud what would happen if the balcony snapped off the building and sent us plunging down.

“You know what you would do?” he asked me.

“Yes?” I asked, eager to hear his sage advice.

“You put your head between your knees and kiss your rear end goodbye,” he slyly said.

And that is all I could think of. I know, I know – I will tell my kids to find the nearest adult if their cell phones don’t work. Do we have to come up with a meeting place? Maybe I’m just too much of a fatalist to think these plans make much of a difference. Hopefully I have given my children the tools they need to be resourceful and strong.

Ben has successfully learned to take the 13 minute bus ride from work to school. He has an ID card, a bus pass and his backpack and is very proud of his achievement. It’s thrilling for me to watch him achieve this independence since he is unable to drive. His 16 year old brother is about to get his driver’s license but the bus riding brother makes me just as proud.

It’s scary sending children out into the world after keeping them safe when they are young. But there are many wonderful experiences to be had out there. Here’s to keeping my fingers crossed and hoping for the best. Oh, the places you’ll go Ben!

Get a Little Uncomfortable

I started my professional life as a social worker in a hospital and after several fulfilling years I stayed home to raise my kids. Little did I know how much my previous work as a hospital social worker would help me raise children, particularly my son with a Jewish genetic disease who has many medical problems. It gave me a unique insight into both sides of the hospital bed – as the helpful professional and the hands-on caregiver.

As the years passed I had little interest in returning to social work as a career. I had enough problems of my own – I didn’t feel like hearing other peoples’ problems for a living. Sure, I like to think of myself as a good friend and am happy to offer my unprofessional advice when asked. But I am content to quietly deal with my own stuff while grabbing happiness when I can.

After my mother died I started writing, something I had not done before. My sister encouraged me to start a blog so I gave it a shot. A friend who is a professional writer and teacher suggested that maybe it was my mother’s legacy, as my grief over her loss led me to put my thoughts to paper. My mother was an incredibly thoughtful and kind person; I loved the idea of helping others through my writing as a way to honor her memory. The response to my blog was very positive. It turned out to be a great way for me to work through thoughts and issues that I grappled with and it seemed that people liked hearing what I had to say.

I am inspired by people I know who take chances and try new things in middle age, who fully embrace the saying that life happens outside of your comfort zone. People I know and admire have done really interesting things: started a Jewish acapella group, volunteered to be the president of an overnight camp board of directors, took a stand-up comedy class, became a hospice volunteer, and a volunteer advocate for children in the court system, became a health coach/nutrition expert, and a mentor to a teenage mother hoping to complete a college degree. Another friend who has been a lawyer for years is now working towards becoming a high school English teacher. Who knew that a friend and I would become leaders as part of a international women’s’ trip to Israel, helping women to rediscover their Judaism and connection to the land of Israel?

My writing led me to explore storytelling after my husband turned me on to a podcast called “The Moth” on which people tell true stories without notes. I had little public speaking experience but on a whim, I signed up for a storytelling class in the spring. It was in downtown D.C. and I knew no one in the class. The final class was a small performance for friends and family. I loved it so much that I decided to put my name in a hat at a Moth “Story Slam” in DC., which is an open-mic storytelling competition open to anyone with a five-minute story to share on the night’s theme.

I had one of my teachers coach me and I felt well prepared. I arrived that evening, put my name in the hat and then almost had a panic attack as the theater was filling up with hundreds of people. What had I done? I sat in the audience, not knowing if my name would be called. After the first story, my name was announced…show time! I bounded up on stage and told my story. It was terrifying and exhilarating but I was thrilled when it was over and felt so proud of myself. Out of my comfort zone indeed. It was a great place to be.

Here is the story I told that night. I didn’t actually win although I came in a close second. I felt like a winner anyway. The theme of the night was “Karma.” Turns out being uncomfortable isn’t always so bad….I highly recommend it.

 

 

Sweet Elusive Sleep

I just want a good night’s sleep. My kids are all teenagers so the unpredictable nighttime madness is over. Some stay up later than me so we peacefully coexist in the nocturnal hours.

A few months ago I noticed that my hands were falling asleep at night. At first I thought I was just sleeping on them. Then I noticed numbness in the tips of several fingers on one hand. I worried that I had diabetes like my late mother. Not being overly neurotic or a hypochondriac, I occasionally use a handy app called iTriage for perplexing symptoms before I go see a doctor. I had previously diagnosed myself accurately with shingles.

This time I came up with a possible diagnosis of carpal tunnel syndrome. I saw a hand specialist who confirmed my diagnosis which is apparently very common in women in their 50’s. While not thrilled with this diagnosis, at least it’s not life-threatening and I was once again secretly proud of my diagnostic skill. I would have patted myself on the back, if my hands didn’t bother me so much. The specialist recommended I try hand/wrist splints for a month while sleeping to see if this would relieve my symptoms.

I never thought how much numb hands would affect my horizontal repose but they did. It seemed cruel that on the rare occasions when I could leisurely lie in bed and read in the morning, my body wouldn’t cooperate and I had to get upright and out of bed to relieve the numbness. Ever the supportive spouse, my husband tolerated my whining, the loud ripping off of the velcro contraptions/splints of torture during the middle of the night in my moments of desperation and discomfort and supported my decision to have surgery.

The surgery was uneventful and seems to have relieved the symptoms. Sweet sleep would be mine again. I was psyched. Then, before I was even completely recovered a new problem developed. My husband told me I was snoring.

Snoring? Oh great. One sleep problem addressed and now another one loomed. I was mortified. Is this what middle age is like? Solving one physical problem and then another one pops up like a game of geriatric Whack-a-Mole? Sure, my husband had to endure my complaining about my hands but it didn’t really affect his sleep. Now I had a problem that affects our marriage. I envisioned a slippery slope where one of us leaves the bedroom to get some sleep and there goes the marriage as we know it.

I googled “snoring in middle age women” and find I am not alone. I am optimistic that I can tweak my lifestyle with good results before I have to move on to more invasive sleep studies, c-pap, etc. So many people are kept from a good night sleep by anxiety, depression and stress. I am fortunate that these things don’t plague me. It’s my body that is rebelling and ruining my rest.

My husband and I can still joke about it. Before going to sleep the other night, I wished him a good night sleep and hoped that he wouldn’t put a pillow over my face. He agreed that while it might be tempting, he didn’t really want to go to jail.

While we laugh, clearly this has the potential to be a real problem, not only for me but for my bed-mate. Just when I was looking forward to a good night’s sleep I feel exasperated that it is elusive for now. I dread going to sleep, worrying if I will drive my husband crazy along with the nudges from him during the night. To add insult to injury, I find that the glass of wine or two that I occasionally enjoy messes up my sleep as well. Falling asleep is easy with alcohol but I sometimes wake in the middle of the night unable to fall back asleep.

So I read – thank God for the Kindle but who knows how the electronic devices screw up my Circadian rhythm?

The pediatrician recently gave one of my teenagers a stern talking-to about the importance of getting 8 hours of sleep per night so all of the data he has acquired during the day can be sorted and stored into his brain properly while he is sleeping. All I could think about was how amazing it is that I function as well as I do, given the shenanigans of my body while it is allegedly “sleeping.”

The writer Anthony Burgess said, “Laugh and the world laughs with you, snore and you sleep alone.”

It almost makes me yearn for numb hands.