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.

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.

 

 

A Minority at the Age of Majority

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As the school year begins, there is excitement in the air with many “firsts” and “lasts.” The first day of a new school, the last first day of school, and everything in between. For me, there is a tinge of sadness. My second child is a high school senior, with a twist – it is his first senior year, as the plan is for him to complete high school in five years instead of four. How exactly would one word that on a Facebook post?

I look around and see my son’s peers who I have known since he was little, finishing up their college tours, getting ready to start the college application process, like my oldest son did two years ago. I feel profound sadness that my second son is not sharing this experience. He has a genetic disorder called Familial Dysautonomia, which has many health and cognitive ramifications. He was diagnosed when he was one, so I have had his lifetime to adjust to his “normal,” and accept his non-traditional lot in life. Fortunately my glass is usually half full, so I can enjoy what I do have without focusing on what I don’t. I always think of that saying about “if we all threw our problems in a pile and saw everyone else’s, we’d grab ours back,” which I generally feel to be true.

My son recently turned 18 and I am proud of all that he has accomplished in his difficult life. The fact that he is a senior on the diploma track, even if it takes two years, is a huge accomplishment. He learned how to tie his shoes last year, a difficult task when you have poor fine motor skills. While he eats by mouth, which is something else he has learned to do as he’s gotten older, he has a feeding tube and has learned to feed himself independently. He plays piano. He learned to kayak recently on a family trip. He has an excellent memory, is very sweet and friendly, and loves his screens – be it a computer, Iphone, television, movie screen, or any hand-held device/game – often all at the same time!

When most people turn eighteen, the world opens up for them. They can vote, join the military, serve on a jury, get married, get a credit card and apply for loans. When my son turned eighteen, I had to apply for guardianship for him. What exactly does this mean? Basically, a court will determine that our son “is incapable of making decisions because of severe disabilities,” and that he is in need of protection. The court will then appoint someone to act on his behalf, namely us.

While I am well aware that my son is “disabled,” these are painful words to see in black and white. It feels like a punch in the gut to read the forms completed by two physicians which state that his disease is permanent, progressive and fatal. I know these things to be true but they do not rise to my consciousness on a daily basis.

Not one to fret too much, I generally let life unfold organically, guided by my inner voice and values. I know my son is fragile but I do not focus on his life expectancy, instead cherishing each day and year. I have come to learn that none of us know what the future holds, so other than living a reasonably healthy life, why worry about it? As someone wisely suggested to me years ago, I try not to borrow worry from the future.

It is at these milestones when my grief for the loss of a typical child rises to the surface, gently rolling over me in waves. Intellectually, I know that guardianship is in the best interest of my son and that it does not really change the day to day care and future planning that we already do for him. Being his guardians allows my husband and I to continue keeping him safe while encouraging his growth and independence. It just does so in such an official manner, unlike our other children who will hopefully all go off to college and make their own decisions about their lives with only occasional consultation from their parents.

The adult future that always seemed so far away during his difficult youth has arrived for my son. I am grateful that he is relatively healthy, happy and has reached the age of majority. He is a delightful young man who enjoys the simple things in life, being content and happy spending time with his family. We will deal with this legal task, mindful of the huge responsibility of being someone’s guardian and then go back to just being his parents, leaving the sadness behind for now and seeing what each new day brings.

 

 

Navigating with Grace

If you’re tired of reading my essays, take a listen to this interview I did with Jana Panarites on her podcast, Agewyz, where she gives voice to the struggles of caregivers. After all, we all are, have been or will be caregivers at some point in our lives. I hope you’ll take the time to listen and share with others. Maybe you would like to share your story with Jana too? Click HERE to listen.

Better Late Than Never

There are many things parents teach their children—toilet-training, personal hygiene, shopping, food preparation, shoe-tying, bike-riding, and swimming to name a few. I have had the pleasure of teaching one of my children to feed himself through his gastrostomy tube.

This 17-year-old son, the second of my four children, was born with a Jewish genetic disorder called Familial Dysautonomia (http://www.familialdysautonomia.org/facts.htm). He walks, talks, and is cognitively with it, but he is medically and physically fragile. He eats some food by mouth, but gets much of his nutrition through a gastrostomy tube in his stomach.

He was diagnosed with this disease when he was 1-year-old, but he had feeding trouble from birth. A g-tube was placed at 6 months, once the doctors figured out that the formula from a bottle often went into his lungs instead of his stomach. Speech therapists encouraged us to feed him by mouth in the hopes that the tube would be temporary. As desperate young parents, we spent hours and hours feeding our son by mouth although he was often uninterested and somewhat averse. We had one other child at the time who was only 16 months older. We were discouraged but accepted the tube feedings as part of our life, at least for the short term.

While it was hard to accept this fate, it was much quicker and efficient to tube-feed him. Sure, we still had to feed him several times a day, but it only took a few minutes each time. We grew accustomed to the stares and questions from curious people. We just wanted to feed our kid and hoped that he would continue to grow and be “normal.”

Like many parenting tasks, the feedings soon turned to drudgery and felt like a chain around our necks. Every couple of hours we had to drop what we were doing and spend a few minutes feeding our son. Yes, we had to feed his siblings as well, but with them we could put the food in front of them and walk away. The feeding tube felt more like a tether as we had to stand there and pour the liquid into the syringe, connected to the tube that went into his stomach.

As he got older he could at least hold the syringe so we could dash around feeding the other kids and return frequently to pour more formula into the syringe. But that too became cumbersome. What to do? How could I make my son more independent with this task?

Perhaps divine intervention led me to find a funnel underneath a sink in a newly renovated bathroom in my home. Hmmm, what the heck was this? Some piece left over by the plumber? A light bulb went on over my head, as I could envision this funnel sitting in my son’s feeding syringe, giving him a wider opening into which he could pour the formula, given his less than optimal gross and fine motor skills. It’s not called the “mother” of invention for nothing.

He resisted the idea at first but quickly got the hang of it. Freedom, at last! And the funnel? Turns out it was meant to fill the soap dispenser that is built into the counter-top. You can imagine the reaction I got when I called Kohler to order 12 of them!

So maybe we were remiss in teaching our son some of the other self-care skills. He can’t ride a bike, but not for lack of trying. He’s safe and comfortable in the pool, but he can’t actually swim strokes—again, not for lack of lessons. Those things weren’t in the cards that God dealt him.

But he did recently reach a momentous milestone. He learned to tie his shoes. We have tried to teach him over the years without success. His frustration, and ours, was too great with the return benefit just not seeming worth it. Sure, I knew he was too old for his mom to still be tying his shoes, but somehow it just didn’t make it to the top of the “things to worry about” list. His health is always number one.

Recently I took my son along with my 11-year-old daughter who wanted to get a new pair of Converse All Star sneakers. While at the store, he decided that he would like a pair as well. Given that he rarely shows any interest in fashion I happily agreed to buy them for him. He was very pleased with his new shoes, which inspired me to raise the dreaded issue of shoe-tying. We tried the bunny ears technique first which was too cumbersome. Somehow, when I showed him exactly how I tied my shoes, it clicked and his fingers were able to do what his brain told them to!

He is super proud of his new skill as he walks around in his new Chuck Taylor’s. And as his mom, I couldn’t be happier. Better late than never.