Why I Like Having a Dog

Against my better judgment, I recently got a dog.  He’s now eight months old.  I didn’t particularly want one.   They mess the house and chew on things.  They require a lot of care.  The children promised they’d take care of him and I am sure you can guess how that has worked out.

The weird thing is, I am surprised to find that I enjoy having a dog.  But not for all of the obvious reasons like unconditional love, man’s best friend, and so forth. I have not become a cuckoo, over the top, dog person.  While I do not care to be licked by my dog, I like petting and snuggling with him.  I did not anticipate the following reasons why I would like having a dog:

1)    Confirmation that my children are not sociopaths.  Not that I was really worried that they were, but I remember back to some psychology class in college where I learned that torturing animals is diagnostic of being a sociopath.  My children really love this dog and are very gentle with him.   In particular,  I love watching my teenage boys return from school each day and rush to play with their pup.  This daily ritual warms my heart.  Even if it lasts only five minutes, dog ownership is worth every second of it.

2)     Ascribing human thoughts and emotions to the dog is great fun for the whole family.

“Shoe, what shoe?” we joke, as he prances away with a sneaker.

“It’s Mommy,” my children announce when the dog comes running to greet me whenever I arrive from another room.

The dog recently hurt his leg.  I called the vet who told me he should “take it easy.”  My sister wondered why that should be so hard for a dog, as he doesn’t have to really do anything or go to school.

“Oh, he’s very busy,” I joked.

He has toys to fetch, squirrels and birds to chase, twigs to eat, and dogs to sniff.

3)  Freedom to curse at the dog when no one’s around.

“Why would you do that?” a dog-loving friend of mine asked.

I replied, “Um, because he’s annoying sometimes,” stating the obvious.

4)    The children no longer fear dogs.   There are so many scary things in the world.  One less thing for them to fret about.

5)     Learning about dog behavior is fascinating.  We hired a dog trainer because we think people like a well-behaved dog just like we all appreciate well-behaved children.  During the first session, he taught him how to sit within minutes. He was like a magician.  Or a dog whisperer.   Training the dog ourselves proves a little harder, but together as a family we’re working on it.

Except for my 17 year old.  Before we ever got the dog he was very clear about his feelings.

“I do not want a dog.  I will not walk it or take care of it in any way,” he announced.  He added, “I am leaving for college in a year and a half, why can’t you just wait?”

I respected his feelings.  And in spite of himself, he loves the dog.

6)     The dog is a friend for my disabled son.  Sure, my son has his siblings and family friends but one by one they will leave the house.  I relish seeing him actively play with the dog, throwing a ball for him to fetch.  It gets him off the couch.  And it gives him another way to love and be loved.

7)    It forces me to get outside.   Even in the cold months, I mostly find it invigorating.  It’s good for him and for me. I see what’s going on in my neighborhood, greet neighbors, and meet other dogs and their owners.

8)     I get a huge kick out of the dog park.  It is a whole different sub-culture from the human parks.  I recently was telling some other dog owners this at the dog park.  We looked over to see one dog humping another.  I remarked how that wasn’t really appropriate behavior.

“Use your words,” an older woman said to the dog.  We all had a chuckle. Well, maybe not so different from human parks.

9)    I enjoy watching the pup master new skills.  We all cheered when he finally learned to go down stairs.  The dog trainer told us male dogs learn to lift their leg to pee by watching other dogs.  So I told my sister I was going to take him to the dog park so he could “man up.”

“You should have thought of that before you had him neutered,”  she said.  True, but the trainer assured us one has nothing to do with the other.

He recently started attempting to lift his leg.  I couldn’t be prouder.

For some reason, I am not stressed out about having a dog.  Sure, he’s chewed up a few things and had many “accidents” in the house.  But he hasn’t trashed my house.  And it’s all part of what makes our house a home.  It’s not a museum; it’s for living.  What’s one more living thing, even if it doesn’t use the toilet to go to the bathroom?

I see the benefit of having a dog for me and my family.  It brings a lot of joy into our home.


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.

I Guess I’m a Cancer Survivor

Though I don’t always think of myself that way. I had breast cancer four years ago. I was diagnosed from a routine screening mammogram at the age of 46. Stage IIA. I had a lumpectomy, chemotherapy and radiation therapy. I take Tamoxifen daily. I’m “clean” and should supposedly live a full life and hopefully die from something other than breast cancer.

I’m so clear that usually I forget that I had cancer. When I see someone who I don’t frequently see, they tilt their head and earnestly ask, “How are you?”  Particularly people who met me when I was in chemotherapy and was wearing head coverings.  Or when my hair was very short as it grew back.  My husband says he too gets the pointed question, “How’s Susan?”  He always knows what they mean.  Sometimes people are more specific. “How’s your health?” they persist.  I’m sure their questions come from a place of caring and concern.

“Huh?” I reply. “Oh that,” I remember. “I’m fine. That was 4 years ago.”

I mostly forget that I had cancer.  I feel like everyone else who worries about a new lump, bump or symptom they have. I never felt compelled to make “cancer survivor” my primary identity.  I said to my husband, between the bad mammogram results and the actual diagnosis, “If I have breast cancer, I’m not wearing that pink ribbon.”  He got the Seinfeld reference.  I didn’t want to be part of the big walk/run world.  Don’t get me wrong – I appreciate all of the people who train, walk, and raise money for the cause.  I joked that having my friends and family for a mimosa brunch on a “breast cancer event” morning would be more my style.

Sure, I have a scar on my breast and a “tattoo” from radiation therapy but I don’t really see them anymore.  Yes, I have annual mammograms and see my oncologist at regular intervals.  I recently went for a routine mammogram and someone wished me good luck. They meant well, but I don’t view going for my mammogram in that way.  Sure, you can have a secondary breast cancer,  but it is unlikely to come back in the breast.  When I do worry, it’s about a metastatic recurrence somewhere else in my body – lungs, brain, bones.  But I am relieved anyway when the mammogram is clear.  It gives me a sense of security that I am cancer free, for now.

My sister is one of two people in my family of origin who has not had any cancer diagnoses.  She’s waiting for her”cancer turn” in our family.  She feels it’s only a matter of time.  But she doesn’t seem to be fretting about it in her daily thoughts.  It’s just stuffed to the dark recesses of her mind, like the rest of us.

“We’re all hospice patients,” I like to say.  Some people hate when I say that.

“That’s the most half-empty thing you say,” my husband noted of my usually optimistic personality.

But I really think of it as half-full.  I think of life as a trajectory, from the moment we’re born.  I try to enjoy every phase of life I’m in.  I don’t yearn for the past or pine for the future.  Or worry about the future.  I just hope for the best.  Call it denial.  I call it “living.”

A few years before I had cancer, I was hiking in a forest in Alaska.  I was overcome by the vastness of nature and for the first time in my life felt like an insignificant speck of dust in the universe.  This did not frighten me, but rather helped me see my part in the world and feel okay with it.  Am I important?  Yes.  Do people need and rely on me?  Of course.  Will the world go on without me?  Absolutely.

So when I received my cancer diagnosis and worried about my demise, this thought helped me find a little peace. That, and baseball, a game I usually have no interest in.  During that dreadful time before the definitive diagnosis my family went to a baseball game.  And for the first time, I felt comfort in the slow pace, the crowd, and – okay – maybe a beer or two.  I told my sister about my experience and how I thought I may become a baseball fan.

“Yeah, that won’t last,” she said.

She was right, of course.  But I do like baseball a little more than I used to, even though it always reminds me of that time in my life.

As a cancer survivor, this feeling of impermanence is how I live my life.  I feel a certain urgency to impart all of my wisdom and knowledge to my kids (without them knowing it).  I want to avoid them sitting on the therapy couch saying,

“My Mom always talked about dying and was constantly shoving wisdom down my throat.”

Let them go to therapy for the many other ways I will surely screw them up.

I know how lucky I was with my cancer experience.  I am keenly aware of the many people I know who live with cancer as a chronic illness and can’t “forget” about it as easily as I can.  For those people, constant vigilance and treatment make this impossible.  And of course, I can’t help but think about the many people who have succumbed to this disease.

So thanks everyone for all your concern and caring.  I’m fine, for now.

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.

Happiness Prevails

I anticipated my son’s bar mitzvah with trepidation.  Yes, I was looking forward to the service and celebration.  But I was also dreading it and wondering if I would be a weepy mess, missing my mother.

Once the snow became a non-issue, the sun came out, everyone arrived from out of town as scheduled, and I felt tentatively excited and happy.  Everything went as planned.  My son did a wonderful job, as did the rest of our family and friends.  I found myself “in the moment” during the service, very engaged, and happy.  How could I not be happy?  I was surrounded by so many people who love and care about me.  And who knew my mother.  They all assured me that a) she loved my outfit, and b) she was beaming with pride from up above.

I wore jewelry of my Mom’s throughout the weekend, and of course her coats.  I could feel her style and panache channeling through me as I prepared for each event.  I faltered when choosing a necklace to wear one night.

“Don’t over-think it,” my sister said.  “Just go with it.”

Thank goodness for her grounding sensibility to keep me on track.  Just like my mother would.

It occurred to me when the weekend was over that I felt more happy than sad.  I was pleasantly surprised to feel that way.  It makes me hopeful that I will feel fuller happiness as time goes on, without my mother in my life.  I realize she is everywhere.  In the love and nurturing I receive from my dear friends and family.  In the way my dad, sister and I always ask, “What would Rita do?” In my children.

I am ever an optimist, like my mother, although a more cynical one.  She lived every day to the fullest.  And I will too.

The Cycle of Life Continues

So my third son will be become a bar mitzvah in a couple of days. I find myself very excited and very sad at the same time. My mother has been dead for five months. It’s the first occasion that I have planned without her.

I’ve had months to anticipate this event with my mother’s absence. She taught me a lot and infused me with a lot of confidence so planning menus and parties doesn’t stress me out. My husband is very helpful and capable. My son is well prepared and excited to shine on his big day.

My mother had impeccable taste and dressed beautifully. I loved to take her shopping with me for these events. This was the first time I had to go on my own. I went to a store she and I loved. I found the perfect outfit for my son’s bar mitzvah.

I told my sister, “I found an outfit and mom loves it.”

“How do you know?” she asked.

“I could hear her voice in my head,” I confidently told her.

I guess that’s how it goes, going forward. That’s what others tell me. Her presence will be with me, though her absence will always be felt. I feel incredibly weepy as the day approaches.

And then the snow came. About a foot.

Really? Sometimes it feels like I get a little too much of the bad stuff when God passes things out. I don’t want to sound ungrateful – there’s mostly good things in my life. And I know winter events are iffy. But why me?

Fortunately my son is oblivious to the stress. So I just quietly take one for the team. And hope for the best.

My sister lives in the Midwest. Without too much drama, I told her she has to get here, even if she has to drive the nine hours. My Mom won’t be here but I need my sister by my side.

Keep your fingers crossed…

The Grief of a Child

I was six months, a teenager, in my twenties and in my forties when each of my grandparents died.  I always felt a certain sadness (except as a baby, of course) but it didn’t seem to have a large impact on my life.  They all lived locally, but I was particularly close to my maternal grandmother.  She died at 99 years old, after 15 years of progressive dementia, so the loss was gradual.  By the time of her death, it was a relief that her suffering (and ours) was over.

I know times have changed.  Grandparents are not so “old” anymore.  70 is the new 50.  Older people are more vibrant, vital, and engaged in life than in the past.  They are tech savvy – a lot of them – and seem more relevant and connected to younger generations.  This, coupled with a closer relationship with my parents – both emotionally and geographically, must explain the grief that I see in my own children over the loss of their first grandparent (my mother.)

My children were aware that their Bubbe  had cancer.  We did not belabor it, but they knew that she received treatment and did not always feel great. You can’t protect children from bad or sad things happening in life, but you can teach them the skills to cope with adversity.  They know that some people get cancer and are cured (like me, who had early stage breast cancer) and some people die from cancer.

As my mother started her descent into her losing battle with cancer, my children were aware that hospice was involved.  In her final days, they allowed me the space to be with my mother while my husband tended to  their needs.  They watched and learned what it means to be a family and to help one another.

One of my son’s came by my parent’s house toward the end and said, “My friend’s mom (who was a hospice volunteer) said that the hearing is the last sense to go.”

“Why don’t you whisper into Bubbe’s ear and tell you love her?” I suggested.  So he did.

At my mother’s funeral the children sat with their first cousins all in a row, right behind their parents.  Their gentle tears were a tribute to the grandmother they loved.  Several of the grandchildren served as pallbearers.  They came to the cemetery and participated in the burial by shoveling dirt on the casket – a Jewish ritual.  They comforted each other, as well as their parents and grandfather. I was touched by their maturity and the depth of their grief.

Recently my children were looking at videos of their younger selves on the computer, as they love to do.  My husband and I drifted away to read the paper and wash dishes.  We weren’t paying attention to who was left watching what.  Our 10 year old appeared quietly, visibly upset but denying anything was wrong and went to bed.  When I went up to check on her a few minutes later, she was under the covers and crying.

“I was watching the videos and I saw Bubbe,” she said.

“I guess you haven’t seen Bubbe since she died,”  I replied. Weird, I know. She had watched a video of her 7th birthday party, and my mother was there.

“You don’t have to protect me from your sadness honey.  We can share our sadness.  I feel sad too.  I still can’t believe that Bubbe is really gone,” I told her.  We laid in her bed, hugging and crying – grieving together.

And once again I was touched by the extent of my 10 year old’s grief and grateful that she knew the love of her Bubbe.  I guess I witnessed our family’s version of the famous saying by Alfred Tennyson.  And I do think it’s better to have loved someone and lost them, than never to have been loved by that person at all.