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.

 

 

 

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.

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.