rare diseases

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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.

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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!

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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.

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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.

 

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Discluded

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The topic of inclusion for people with special needs has been on my mind lately. In particular, I’m focused on my seventeen-year-old son who recently auditioned and was selected to be in a two-year conservatory program for students with cognitive and/or developmental disabilities. It was a group audition with a one minute solo opportunity of the actor’s choice. Our son told a brief story about his beach vacation, complete with his amazingly good animal imitations. I wasn’t there, but I can only imagine that he brought down the house.

To be included, or not to be included? That is the question.

It is especially pertinent to the parent of a child with special needs. My son has a genetic disease, Familial Dysautonomia. He walks and talks, but his balance and gait are not great. He has a feeding tube, through which he can feed himself and he also eats by mouth. He has no behavior problems and is sweet with an innocent personality. We encourage him to be as independent as possible.

I recall a holiday dinner with friends a few years ago when my then eight-year-old daughter and her friend came to complain to the adults that the big kids weren’t playing with them.

“They’re discluding us,” they announced to our amusement. We did what adults do – told the big kids to be nice and tried to persuade the little ones to give them some space.

But really, must everyone be together all the time? Sometimes I like to hang out with people like me, sometimes I don’t.

When my disabled son was younger, I was very focused on inclusion and mainstreaming. I was so hopeful that he would fit in, make friends, and lead a typical life. Why shouldn’t my child be included? I was his advocate and tried so hard to focus on the parts of him that were like everyone else, rather than the things that made him different. He goes to a large public high school where he is mainstreamed and manages amazingly well with a lot of loving support.

As he’s gotten older, however, my acceptance of his differences has evolved. I can embrace the wacky, fun, quirky things about him. When he aged out of day camp and their wonderful inclusion program, the next option within the camp was with a self-contained group of disabled kids. At first I bristled at the idea of him being with a group of disabled kids – what about typical peers and role models? But, I had no other options, the camp had been great for my son since he was three-years-old, and it was better than him spending the summer playing video games in my basement.  We decided to give it a try.

I learned that my son didn’t mind being in the group at all – in fact he liked it. Even if I perceived that he was higher functioning than many of the other kids, he enjoyed making his friends laugh, helping out and hanging out with the counselors. It was the beginning of my being able to watch him move into and out of inclusion with fluidity and grace.

The campers went on a field trip to an improv place. The counselors told me my son loved it, which gave me the idea to pursue a theater class. While the theater program offers both inclusion and self-contained classes, we opted for the self-contained ones since he had no previous “training.” He took two classes last year. We went to the end of the semester observation. My husband felt that our son seemed so different than the other kids. I, on the other hand, saw him as belonging in the group and was so happy to see him shine. Apparently, inclusion is in the eye of the beholder.

I am thrilled that my son has this opportunity to learn some new skills, have fun, make friends, and be part of another nurturing community. As Shakespeare said, “All the world’s a stage, And all the men and women merely players.” These kids hit their marks, sing mostly on cue, and exit stage right and stage left, albeit slowly. They may have different abilities, but their performances are no less sweet.

 

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“Not Guilty”

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My husband is a very competent, caring person. While I was away on a recent trip to Israel, he managed to successfully get all four of our children off to camp. Although this is an impressive feat, let’s be real – yours truly made the fifty trips to Target and did the actual packing prior to my trip.

I called him on my last day in Israel as he was driving our son with special needs, the remaining child at home,  to sleep-away camp.

“Ben had a bad day yesterday,” he reported.

“I’m sorry,” I said.

“It’s not your fault,” he replied.

I appreciated his kindness. I felt sad that my son had a bad day and that my husband had to deal with the unpleasantness for several hours. Usually I am the one at home who has to deal with these episodes.  I am thankful he’s a hands-on dad. And that he didn’t try to make me feel bad for being away from home.

I hung up the phone and told my friends what had happened.

“I don’t feel guilty,” I explained, “I just feel badly for them.”

“What a novel concept,” one of them said, as if a light bulb had gone off over her head.

Feeling guilt, like so many other things in life, is a choice, and it is one that I don’t often choose to make.  I come by a guilt-free disposition naturally. My family doesn’t do the stereotypical “Jewish” guilt. In fact I hate when people act like guilt is part of our heritage.  Am I perfect? No. Do I make mistakes? Yes. I try to learn from them and do better the next time. Done. Let’s move on people, there is nothing to see here.

Women often feel self-centered or selfish when they do something for themselves or not with their families. I say nay-nay. In the blink of an eye my kids will be gone. I want to keep growing and enjoying life in ways that are sometimes independent of my family. I don’t want to get mired in feeling badly for what I have or have not done.

When I got home, my husband was quite proud of how he managed all of the household duties and challenges on top of his job. It reminded me of the time he came home from a business trip and my chest heaved with pride having fixed a broken toilet, as if it was a major engineering feat. We both praised each other even though I’m pretty sure each of us was secretly thinking, “Do you want a freakin’ medal?”

I returned from my trip energized. A whole week of being Susan, not someone’s wife or mother, was refreshing.

Selfish? I don’t think so. Self-preservation is more like it.

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The “Joy” of Air Travel

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We recently went on a family trip. It’s easier now that our children are older.  All they need is their screens and some sugar and they are good.  We bring our 15-year-old’s wheelchair, that he uses occasionally, to make it easier getting through the airport.  Adding to the stress of travel is the anticipatory stress of going through security because of my son’s feeding-tube supplies and medications.

On the first leg of our trip, I made the security people aware that I had medical liquids in my backpack. They took my son’s wheelchair and simply let the bag go through the machine – it was so easy.  What a relief! I was not so fortunate on my return flight. I was alone with my two eldest sons on the way home.

Again, they took the wheelchair through. But when I told them I had medical liquids, they pulled me aside and looked at the contents: three cans of formula and a small bottle of liquid medication. I was given a choice.  They could open the cans of formula to test them; but then I would not have formula to feed my son. Or they could search through my bags and thoroughly pat me down.  Really? I’m just a middle-aged lady trying to get from Point A to Point B.

I had no choice and felt like a cornered animal. They searched through everything in my backpack and purse. Then I had to submit to the pat-down.  They called a woman TSA officer over to do the honors.  I wanted to cry. I stood there as she explained what she was going to do. She patted down my body and checked the waistline of my pants. Normally one to find the humor in things, I could find nothing funny about this.  I had to take off my shoes again to be checked. I quietly cooperated when what I really wanted to do was scream. Other passengers tried to avert their eyes but gave me pitying looks, glancing between me and my child in the wheelchair.

It was such an indignity and a dehumanizing experience.

“What’s dehumanizing?” my disabled son asked as he listened to me complain to my other son when it was over and we were walking to our gate.

“It’s when someone makes you feel like you are not a human being, but like an animal or an object,” I told him.

I realize we have an enormous country with thousands of airports. And ever since September 11th, authorities have tried to do many things to make air travel safer. Some things simply give us the illusion of safety.  The TSA workers are just doing their job but they do not make me feel any safer.

Some people may say I should just avoid flying.  I tolerate the basic stupidities everyone must go through to get where I want to go.   I leave my liquid deodorant and hair gel in my checked luggage, even though I think it’s pointless.  I can’t do that with my son’s medical supplies. It’s the senselessness of a one-size-fits-all screening process that sends me over the edge. Are the skies really safer with random, inconsistent screening?

There must be a better way.

 

 

 

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A Case for Genetic Screening

I am going to be part of a panel speaking to a Jewish college group in Washington, D.C. next week about screening for genetic diseases, as the parent of a child with a Jewish genetic disease.  Please indulge me while I gather my thoughts.

I want to tell a story so compelling that these innocent college students will remember it when they contemplate having children. I know it feels very far off for most of them. I want it to be a “scared straight” moment that they won’t forget. Here’s what I’m thinking about telling them.

I am you. You might see someone who reminds you of your mother in front of you today. But I was once a young, carefree college student with the world at my feet. I figured I would have a fulfilling career, marry a wonderful man, have perfect little babies, and live happily ever after. End of story.

Not so much.

I did have a fulfilling social work career and married a great guy. I was screened to see if I was a Tay-Sachs carrier – the only disease my OB/GYN suggested at the time.  I was not. I had one perfect baby. Check – everything going according to plan. I was approaching 35 when I became pregnant with my second child, so I opted for an amniocentesis. All tests were fine. I gave birth to my second son on September 4, 1998. Things were not fine at all. Right from birth, we knew something was wrong with this child. It took us an agonizing year to find out exactly what. He looked fine and was hitting his milestones, but he did not eat or take a bottle well. Forget about breastfeeding this baby. They figured out he had a problem with his swallowing, so that his formula was going into his lungs instead of his stomach (aspiration).  They placed a temporary nasal gastric tube. Imagine walking through the grocery store with your new baby, with a tube in his nose. When it wasn’t resolving, they put a more permanent tube in his stomach instead. At seven months, it occurred to me that he didn’t have tears when he cried (which he did a lot.) My husband said,

“I knew someone who didn’t have tears when I was growing up; they had an awful Jewish disease.”

Then the terror set in. Hope for a normal child was waning. After seeing neurologists, gastroenterologists, pulmonologists, and finally a geneticist, we figured out what was wrong with our baby.  Familial Dysautonomia.  A Jewish genetic disease where both parents have to be carriers.  With each pregnancy there is a one in four chance that the child will have the disease – twenty five percent.  We had gotten lucky with our first baby.  Not so much with this guy.  Poor Ben.  Poor us.  Let the grieving begin.  We went to see the specialist in New York City, who provided the guidance and game plan for us.

At the time Ben was born, there was no carrier screening for this disease as they had not identified the gene yet.  So there was nothing we could have done to prevent this from happening with this child.  But we could check subsequent children, should we decide to have them, with genetic markers since we already had a child with this disease.  Which we did.  And we were lucky that the odds were with us and we had two more healthy children.  It was not without anxiety and hard decisions about what we would do should we become pregnant with another child who had FD.

Life with Ben has been full of joy and agony.  When he is well, he is a sweet,  happy fifteen year old who walks, talks, and eats some food.  He will have the feeding tube for the duration of his life, but he is able to give himself his formula independently.  He sometimes uses a wheelchair. He had a bar mitzvah and was able to chant Torah.  He goes to a regular school.  He loves video games, the family dog, his brothers and sister.

He is my child who will say, “Oooh Mom, you look beautiful” when I dress up to go out.

When he is not well, it is torture.  He has autonomic “crises” which means that he feels nauseous, has a very high heart rate and uncontrollable retching.  These can last for hours and can come in clusters over several days.  We have no way of predicting when they will occur.  Sometimes they result in hospitalization.  Always they are traumatic for Ben, and our whole family.  We are experts at “Plan B” as I like to call it.  We are grateful to our friends and family who help us at a moment’s notice.

We are as normal a family as we can be.  Having Ben humbles all of us and makes us grateful for our typical bodies and health issues.  I joke that my children don’t have “pedestrian” pediatric illnesses.  Minor things don’t shake us up.  We have met people who we never would have come in contact with had we not had Ben.

In terms of life expectancy, they say that half of the people born with FD live until at least thirty years old.  Their health is fragile and unpredictable.  I have come to accept that we don’t know what’s going to happen with any of our children, or ourselves for that matter, so I don’t spend a lot of energy worrying about how long Ben will live.  We just raise him the best we can and plan for a hopeful future.

We live in a time when people have more information and choices when planning their families.  But you can not make an informed decision unless you get the necessary information. I urge people to get the full panel of genetic tests, which can be done simply by taking a blood test. Many of these genetic diseases are devastating, for the child, the parents and the whole family.

Ben and I are living proof that it can happen to you too. There are so many awful things in life we have no control over.  This doesn’t have to be one of them.

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The Monster in my House

My family looks like a regular family. Mom, Dad, four kids, a dog. We joke that even our special needs child is pretty run-of-the-mill in terms of a disabled kid, even though he has a genetic disease called Familial Dysautonomia (FD).  Sure, he has a feeding tube but that has just become the norm for him and for us as well. Our life hums along like everyone else’s.

But periodically the awful disease that is usually manageable rears its ugly head and inhabits my son’s body.  When it does, it feels like there is a monster in the house.  The poor child “feels awful” and has uncontrollable retching and oral secretions.  When this happens, he sequesters himself in a small TV room in our house where we have a supply of towels just for this purpose.  He lies on the ground and writhes around, retching and emitting secretions.  Either my husband or myself (usually me, since I’m the stay at home mom) sit with him, wipe his mouth, change the towels, and administer medicine repeatedly (through his g-tube and rectally)  until it is finally absorbed by his wracked body and puts him into a deep sleep.  The retching noises are other worldly, and not in a good way.  At the suggestion of a therapist years ago, I don headphones and listen to music to help drown out the awful noise while doing my best to remain loving and focused on relieving his misery.  This process can take two to three hours, which feels like an eternity.

If my other children are home, they scatter to distant parts of the house so they don’t have to hear their brother.  They fend for themselves and hope it doesn’t last too long.  They suffer along with him and me.

When at last he falls asleep, I sit and wait for 10-15 minutes to make sure it is really over.  Sometimes, the episode is like the burning embers of a fire and will reignite.  It is a tenuous, stressful, awful time.  I minimize all noise in the house to help him drop into a deep sleep.  If it starts again, I am like a wild animal, feeling trapped and helpless.  Sometimes it brings out the monster in me.  I know it’s not my son’s fault, though he always apologizes.

“I’m sorry Mommy,” he says.

“It’s not your fault, Ben.  It’s FD’s fault,” I reply, trying to keep the desperation and agitation out of my voice. I am not always successful.

We hate FD.

I am amused when people say what an amazing mother I am.  I am not amazing.  This is what people say when they are really thinking, “I could never deal with that.  Thank God that’s not me.”  I am an ordinary mother dealing with an extraordinary disease.  I am not unique.  Many people suffer in their houses too, with their own monsters—disabled children, mental illness, sickness.

Oddly, I don’t usually feel anger that this is my life.  I do not believe that God gave me this child because I can “handle it;” in fact, it’s annoying when people suggest this to me.  This child is just one of my kids.  He reminds me not to sweat the small stuff.  To enjoy each day.  To tend to my relationships.

Our family is bound together by many things, and this disease is part of the package.  We all are happy and relieved when it goes away and our sunny, happy boy returns.  The aftermath of these “crises” is like having  post-traumatic stress disorder.  We are on pins and needles for a few days. After an awful episode, if we hear him playing Wii in the basement, every noise sounds like a retch.    When I picked up my other kids from school the other day, one of my son’s said, “You are in a good mood.  Ben must have had a good day.”

We cherish the good days and muddle through the bad ones.