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.

Hospice – Up Close and Personal

I used to be a hospice salesperson. Actually, I was a social worker in a cancer center. Many patients did well with their treatments and went on to live long lives.  But many ran out of options after experimental treatments.  The doctors had nothing else to offer them.  I was often called in after the doctor dropped the “hospice bomb,” as educating about hospice was not always in the oncologists skill set.

Here’s what I would say.  Home hospice care is a way for your doctor to continue taking care of you, without you having to come to the doctor’s office.  The hospice nurse functions as the doctor’s eyes and ears, seeking input and guidance from the patient’s primary oncologist.  The hospice nurses are on call 24 hours a day, so if you or your family member has a concern or are scared, they are available by phone or will come to your home (even in the middle of the night.) Social workers, home health aides, clergy and volunteers help round out the hospice team. I would reassure patients that they were not being dumped by their medical provider, but that it was felt that the hospice model of care was the most appropriate at this point in time.  I would tell family members that hospice nurses teach families about the dying process (from cancer, in this case,) so they know what to expect.  That death had been taken out of the home in the last several decades, so most of us have no idea how someone dies.  I would advise the family about the things that would be helpful to care for their loved one at home – a hospital bed, a bedside table, a bedside commode.  I explained that home hospice does not provide 24 hour care – they are there to support the patient’s primary caregiver and their network of family and friends.  I would help families decide if this was  realistic for them to do, taking into consideration the patient’s wishes.

And then I was suddenly on the flip side of this conversation.

My mother had cancer for 12 years.  She had 2 years of treatment, an 8 year remission, and a recurrence 2 years ago.  She actively pursued every treatment available to her.  She endured awful chemotherapy.  Fortunately, she was relatively symptom-free from her cancer until a year ago when she developed pain in her arm and chest. She consulted with her oncologists and a pain team, with little relief.  My petite mother, who only took one aspirin when she had a headache instead of two, was on whopping doses of serious narcotics.  She hated it, but preferred being sleepy to being in pain.  The months wore on.  She continued to pursue treatment, though her options were dwindling.

I said to my father, “Sometimes I think she’s going to be fine, and sometimes I think she’s dying right before my eyes.”

It was a very difficult process to watch.  I respected my parents’ autonomy and my mother’s desire to pursue life.  I wanted to “navigate them with grace,” as her oncologist (and mine as well) so beautifully articulated for me. But hospice was always in the back of my mind.  The pain medicine did not always bring relief and my mother was in stoic agony.  My parents would call the oncology practice for advice and would have to wait for the nurse to call  back.  My father felt helpless, as Mom’s primary caregiver, and at a loss, not knowing if he could offer her more pain medicine.   In August, while still receiving a new chemotherapy, I finally broached the subject with my Mother.

I said, “Mom, I really wish you had some home care.”

“You mean, hospice?” she asked.

She knew what I used to do for a living and what was in the back of my mind.  She was reluctant at first, saying she wasn’t ready for that.  I told her that I wasn’t suggesting that she crawl into bed and die, but rather I wanted her to live as long as possible.  I just couldn’t watch her live in pain and suffering any longer.

My father was very agreeable and my Mother relented soon after.

“Mom, you had to make decisions for your mother that she wasn’t always happy about (she had Alzheimer’s) but you knew were in her best interest.  I want to do the same for you,” I told her.  It was really hard.

The hospice people came to do the intake.  My mother was completely dressed, had make-up on, and put out cookies for them.  Always the lady.  Regal, my sister says.

She didn’t want to call it “hospice,” which the staff said was fine, as long as she knew what the type of care was all about.  It’s about allowing the disease to take it’s natural course.  No heroic measures.  Don’t call 911, as the EMTs are obligated to perform all possible life-saving actions. A person could end up in the hospital where they determined they didn’t want to be by choosing home hospice.

We took care of Mom in her home, my Dad at the helm and the rest of my family helping out.  The hospice nurses were phenomenal, visiting regularly and tending to my Mother in the middle of the night when we called.  They helped with her breathing, which had become labored, and best of all they found the right medicine to get rid of her pain.  They eased the pain for all of us of a very emotionally and physically draining and painful process.

Tending to her and watching as she slowly slipped away was wrenching but it allowed us to give to our mother in her last days the way she effortlessly gave to us our whole lives.  She brought us into the world and we were going to honor her by helping her peacefully transition to the next world.

She died peacefully,  three and a half weeks after signing on to hospice, at home, surrounded by her family.  I learned that having my Mom die in the home that she loved was a gift.  Even when she had a hospital bed, she made sure she had a view out the wall of glass in her bedroom at the scenes of nature that were such a source of comfort and joy to her throughout her life.  It was so much better to be caring for my Mom in the family home than in a crowded hospital room, with all the inherent sounds, smells and strangers.  My husband noted that rather than focusing on the fact that she died in the house, the predominant feeling that people share is her absence from the space that she was so positively associated with.  Hospice helped make it happen. We were all grateful for that.

Evolution of a Parent

My 15 year old son has a genetic disorder called Familial Dysautonomia.  Search it and you can learn all about this awful disease.  Ben is our 2nd child, 16 months younger than his older brother.  Since our first child was typical, it was obvious to us right away that something was wrong with our second child.

He was unable to breast feed, took forever to drink a bottle, seemed to have a lot of reflux and projectile vomiting.  At six months I took him to the emergency room because I thought he sounded horribly “junky” in his breathing.  It was during that hospital admission when it was discovered that he was aspirating when he drank a bottle.  They gave him a nasal-gastric tube, followed a few months later by a gastrostomy tube (since the aspiration had not resolved.)  After visits to many specialists, the mystery of what ailed him was discovered when Ben was one year old.  As awful as it is to get a diagnosis, it is comforting to know what is wrong and have a medical team to guide you along the way. And fortunately, one of the characteristics of people with FD is a sunny disposition when they are feeling well.  Ben is blessed with this disposition, which is an asset to our family – we get to skip the sullen teenage years with him.

I give you this background to set the stage for raising this child.  We did everything we were supposed to do: early intervention, first in our house, then in special preschool.  Speech therapy, physical therapy, occupational therapy.  Individual Education Plans (IEPs), special ed, regular ed.  Ben always seemed to be just a little behind and we worked hard to keep him as “normal” as possible. As his peers and siblings aged, the gap became more pronounced.  His limitations became more obvious.  We came to accept that Ben is probably not college bound; that hopefully he will get a high school diploma.  If not, we will still help him get a job where he can be productive and happy.

As he’s aged, Ben’s balance and gait have gotten worse.  His stamina is not great and it is difficult for him to walk long distances.  Last summer, we had him use a wheelchair for the first time.  We were in Boston on a family vacation and Ben had had one of his “crises” (a constellation of symptoms, including a very high heart rate, nausea and uncontrollable retching) that required heavy medication to put him to sleep so his body could “reset.”  He was so lethargic, he required a wheelchair at the Aquarium so we and our other 3 children were not stuck in the hotel room for the day.  Ben was thrilled and the other kids thought it was novel.  My husband and I exchanged a meaningful glance.  This was a huge milestone for us as parents of this disabled child.  It was a very public admission that he is fragile and weak and will continue to be so. Our family has to adapt to an ever changing reality.  It made us very sad, but it salvaged the day.

We decided to buy Ben his own wheelchair this past summer.  Annual visits to New York City to see Ben’s specialists, which we combine with a family trip to see the sights, led us to get the chair to avoid dragging him on an unrelenting march across Manhattan in 90 degree heat.

Recently we were in a Smithsonian Museum to see an I-Max movie.  We forgot our wheelchair but came across the ones for lending in the museum.  It occurred to me as we pushed Ben around that this was a good thing for him.  He seemed so much more engaged in the environment as he comfortably sat in the wheelchair, instead of dragging around, squatting every few steps to rest.  And because it was more pleasant for him, it was more pleasant for us.  We could enjoy his company instead of being dragged down by it.

A person can learn to accept a lot, as time goes on.  The stares of others, wondering what’s wrong with your child.  The curious questions about your son’s feeding tube.  Ben’s siblings take it all in stride.  I suppose they follow our lead, as we have always tried to be as normal a family as possible.  We had two more children after Ben, so that he would be part of a “pack.”  His siblings and our family’s circle of friends are his friends and his support system.

It’s not the family we envisioned, but it is ours and we love it….most of the time.

Death of a Mother

I never gave any thought to being in the Dead Mother’s Club.  I know it is universal but you don’t think about it until you’re in it.  Of course I know many people who have lost a mother, prior to losing my own.  They seem like normal people – walking around, talking, functioning, enjoying life.  Who knew they walk around with a hole in their heart?  Sometimes a hole from all the love that is missing.  And some have a hole from the love they never received from their mother and never will.

I have been in many “clubs” in my adult life.  I have made many friends who have children with special needs, like myself.  I connect with other women who have had breast cancer.  I’ve been a runner, practiced yoga, swam, read books.  I have been a happy participant in most of these groups (as happy as one can be with a disabled child and breast cancer).  I have never worn one particular “membership” as my primary identity or badge of honor.  I have accepted these roles in my life and try to pay it forward by helping others.  They all contribute to the gestalt of me.

But this time it seems more deeply personal.  And more comforting to talk with people who had a “good” mother and experienced a similar loss.  One woman told me that 15 years after her mother’s death she still feels the urge to introduce herself: “Hi, I’m Judy, my mom died.”  She told me that my Mom will “settle in with me” after a time, and guide me as I continue on with my life. Another friend said she hates the term “lost my mother.”  Thinking of her mother as “lost” is disconcerting; she died.

Dads are equally as important as Moms, but different.  And everyone has different, unique relationships with each parent.  Somehow speaking with people who have lost a Dad is not the same as talking to a woman who has lost their Mom.  These people still know loss; it’s just different.

My sister and I recently cleaned out my Mom’s closets.  I am more sentimental than my sister so we were a good team.  She helped me to let go of things that would just clutter up my closets.  I was a task master, keeping us focused so we could complete the job in the one day my sister was in town.  Neither one of us are particularly into shopping or clothes.

She said, “I hate shopping.  And I hate shopping in Mom’s closets.”

Mom had a Kleenex in every single pair of pants she owned.  It made us chuckle.  And she labeled a necklace in her jewelry box “for Naomi’s sweet 16.”  My daughter is only 10, but my Mom was thinking about gifting her as she had her older granddaughters.  It made me cry.

I made my sister take a purse, some jewelry, some shoes, scarves, etc.  She was particularly drawn to Mom’s comfy clothes, that we really never saw her wear – sweat pants, a cardigan sweater.  We laughed, knowing that Mother would find this amusing.

That task is done.  We have things that were Mom’s that are meaningful to us; myself more than my sister.  My husband finds it a bit curious, since he teases me for being unsentimental most of the time, constantly cleaning out our house and giving things away.

“You can’t take it with you when you go,” I always say.  Also,

“I’m pretty sure our son’s wives won’t want a  box of their preschool scribblings.”

Contrary to what my husband thinks, I am sentimental, and having things of my Mom’s makes me feel her presence more strongly.

I have taken to cooking and entertaining again, something my mother and I shared in common.  I find it therapeutic to bustle around in the kitchen, sauteing onions and garlic, trying new recipes.  It makes me think of my Mom, who was a wonderful hostess.  She created a warm environment, where people felt enveloped in her home and appreciated for what they “brought to the table,”  She had a knack for creating delicious meals and presenting them with great style – good taste all around.

My father and I are muddling through, helping each other deal with our loss.  I am his “rock;” he is my surviving parent.  I always include him in whatever my family is doing, to help him fill his days and ease his loneliness.  And my family and I benefit from his wisdom, presence and love.  He has his friends, old and new.  He goes to coffee, dinner and the movies. It is strange to see my Dad as a vulnerable man, available on the dating market.  He is figuring out how to be in the world without his beloved spouse of 54 years.   I love my Dad and know that he adored my mother.  I trust that he will find a way to live a different, happy life.  It is an adjustment for all of us.

Mother is gone. Thank God I have my father, husband, sister, children and friends.  I’m slowly finding my equilibrium.