Sometimes Grief Tastes Like Chocolate Ice Cream

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Photo by Calebe Miranda on Pexels.com

“Daddy, can we go for ice cream?” The answer was always yes. Even when I didn’t finish my dinner the answer was yes.

This was our ritual for years throughout my childhood.

When I was young, I thought all fathers took their daughters for ice cream at least once a week.

When the summer evenings became hotter and hotter, my Dad would pile us up in the car and take us to Carvel for ice cream.

Take me into a Carvel and I am immediately transported to my childhood. My senses begin to dance with the aroma that I can only describe as sweet vanilla heaven. Even if I’m not hungry once I step foot into a Carvel ice cream shop I find myself wandering around for a scoop of ice cream feeling like a 5 year old little girl again.

When my father lost his ability to eat from his cancer treatments, I lost a tremendous piece of me. Watching a parent endure a horrific illness is one of the most difficult things in the world. I stopped going into Carvel, stopped indulging on delicious treats. I spent four long years watching my father survive on a feeding tube. For a very long time I walked around angry, and because ice cream was such a big part of my childhood memories, Carvel became an innocent victim.

Grief makes a simple trip to a place like Carvel anything but simple. Carvel was loaded with landmines that I was not ready to face. Abandoned rituals that were once fun are common in the land of grief.

But last week, for the first time in a very long time I stepped foot in a Carvel. Just walking in there was a major accomplishment. I was positive the entire store could hear the sounds of my heart breaking all over again. Tears quietly began to roll down my cheek past my dark sunglasses. My hands began to tremble as I remembered what once was. And suddenly my grief let go for a moment and I was able to remember my Dad as he was. I was able to remember my Dad before the cancer took over. I could see my Dad standing before me, smiling and healthy. And somehow I was able to stand in Carvel and smile as memories of my Dad came rushing in.

Eventually the tight grip of grief will let go, even if for just a brief moment and you too will be able to remember your loved one as they once were.

My Dad is no longer here, but I raise my ice cream cone to him. Chocolate ice cream with sprinkles brings me back to the sweet, cool, creamy taste of a simpler time.

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Be Thankful For Your Ability To Eat

 

 I think about my father every single day.  I think about the pain and suffering he endured. I think about my father every single time I enter a restaurant or roam the food court in the mall.  I think about him every time my senses are overwhelmed by the robust smells of food.  I think about my Dad every single time I take a bite of food.

When I enter my favorite Italian restaurant the exquisite smell of food is so powerful I am moved to tears.  I am reminded of the life my father lived for 7 years.  A life without a morsel of food or an ounce of liquid.  Choking on what little saliva remained in his mouth. Yearning to eat again, fighting with every fiber of his being to stay alive.  Putting on his brave face and trying his best to sit at the table with us while we ate and he fumbled with his feeding tube.  Listening to our guests complain that their food had too much salt, too many peppers (yeah that really happened!) as he quietly inserted the syringe in his feeding tube and administered his feeding via a peg tube.  Quietly wishing that his biggest complaint was not enough peppers but also quietly forgiving our village idiot, I mean our guest for his ignorance.

The majority of our social lives revolves around food.  We are constantly “breaking bread” with others.  Holidays, special events, everything revolves around food.  My goodness just count how many television commercials have food in it!  Food is everywhere we turn!

My father died unable to eat a morsel of food or drink an ounce of liquid because his cancer prevented him from enjoying something so many of us take for granted.  My father died choking to death on what little saliva remained in his mouth after aggressive radiation treatments.  I’m haunted by the memories of suctioning giant clumps of phlegm from my father’s mouth during the final days of his life.  My hands trembling as I stuck a massive tube in my father’s mouth, tears brimming my eyes as I pleaded with God to help us.  Quietly praying, begging and pleading with God to make my father comfortable during the final days of his life.  My father watching me with tears in his eyes apologizing to me that he was too weak to do this himself.  Both of us emotionally exhausted and heartbroken from this trauma.  When I finished with this medieval contraption I kiss my father on his forehead and remind him he’s still my superhero and a little suction machine wasn’t going to change that.  I’m certain the sounds of my heart breaking were deafening that night.

I proudly wear the scars from my father’s battle.  I helplessly watched my father bravely fight to regain his ability to eat again.  Years of endless swallowing therapy, having his esophagus stretched.  All sorts of crazy things just to enjoy one last bite of food.  I become enraged at the cruel, out of line jokes when you mention swallowing therapy to someone unaffected by a swallowing disorder.  Therapy that in the end only gave my father unnecessary anguish and was never enough to jumpstart his muscles allowing him to eat again.  I see no humor in my father’s dysphagia.  I see no humor in anyone that suffers endlessly and dies longing to eat.  Even a criminal on death row gets a final meal before dying.

I choose to live my life and embrace it.  If I choose to indulge today and have a big greasy cheeseburger washed down by an ice cold beer I will enjoy every last bite.  I will not go complain to my Facebook friends how I “cheated” on my “diet”because I know better.  I will not fall victim to the latest and greatest fad diet.  I will thank God that I’m able to enjoy my meals.

On the days when my life becomes overwhelming I will take a deep breath and be thankful because I know it could be so much worse.

Prader Willi Awareness Month

I don’t have children of my own, but I’m a proud Auntie.  I brag at every opportunity and share their photos excessively.  I’m fortunate that two of these magnificent little girls are my sister’s children. I absolutely adore each of these babies.  My oldest niece is 4 years old and my youngest is 3 years old.  I’m blessed that my sister has made me an integral part of their lives.  I remember putting a flashlight on her belly during pregnancy to feel “my babies” move and eagerly counting down to their arrival.  I started spoiling them pre-birth.

My younger niece, Ciara has a rare disorder called “Prader Willi Syndrome.”  When you ask my sister what PWS is below is her response:

PWS is a rare, life threatening disorder with an unknown cause. There is no cure. There are no words to explain how it has changed every aspect of our lives. Aside from developmental delay there are multiple medical complications. Many kids don’t make it to adulthood.

It’s very difficult for my sister to discuss her daughter’s diagnosis.  Both my sister and her husband are amazing parents.  I watch them in awe as they balance full time careers, a 4 year old daughter,  a 3 year old daughter with a rare disorder and now two foster dogs.

Parents with a special needs child are our silent heroes. Their only goal is for the comfort and well being of their child. They quickly learn how to seize the day because they know the value of life. They take nothing for granted.

Our entire family celebrates when Ciara reaches a milestone that most parents take for granted.

Our entire family loves someone with a rare disorder now.

My sister’s family lives a lifestyle that is rare.  Frequent doctor visits, therapy since birth. Diet modifications. Nightly growth hormone injections. They live a routine, one that is uncommon to most families.

My niece illuminates pure, unconditional love. She loves me for who I am.  She can teach the entire world a thing or two about love at just 3 years old.

My niece is the definition of strength, hope and courage.  She is brave, she is my niece and I’m proud to be her Aunt and share her DNA.

May is Prader Willi Awareness month.  This is for my beautiful niece Ciara Elise who defines bravey and courage.  She is my little hero.

Click here for information on Prader Willi Syndrome.

The below photos are a collection of her mother’s favorite pictures.

Why I Cannot Diet

 

Dear Friend:

I’m sorry but I will never buy the latest fad diet that you are selling.  It’s not that I don’t want to.  I want to support you and be a good friend.  I want to be your cheerleader.  I really, really want to.  But I cannot buy into the latest trendy diet.  I hope when you read my story you will understand why.

My father recently passed after a horrific battle with Stage IV tongue cancer.  My father died unable to eat or drink orally.  He lived on a peg tube.  A peg tube is a tube that sticks out of someone’s belly and they receive all their nutrition through this tube.  My father lived on a peg tube for 4 of the 7 years he fought his battle.  He had a diet of medically prescribed shakes, Gatorade and water for 4 years, nothing else.  Unless you count the numerous medications he consumed, also through the peg tube.

Cancer forces you to open your eyes and appreciate life. After you view life through the eyes of a cancer patient you will have no choice but to fall to your knees and thank God for all the little things you have taken for granted.

The last time I sat in a restaurant with my father was well over 3 years ago and it was a pizza place because after his radiation treatments he had difficulty eating most foods.  He had to put a powder called “Thick It” in all his drinks giving them a thick nectar like consistency so his liquids would not aspirate into his lungs.  He lived like this for 4 long years, then one day he was rushed to the Emergency Room with a very high fever. We were informed he had aspiration pneumonia due to damage to his epiglottis from the radiation treatments.  Everything that he consumed orally; food, beverages, medications, even his saliva was entering his lungs causing aspiration pneumonia.   A peg tube was inserted into his belly and he never ate or drank again.

From that point on my father spent the rest of his life yearning to eat again. Holidays, birthdays, special events were never the same.  I would walk into the room to find him watching “The Food Channel.” My heart would sink each time he would discuss a new dish Giada prepared.  We would sing Happy Birthday to him only to take the cake away.  Not because he was on some fad diet, because cancer stole his ability to eat.

Of course pre cancer our big fat Italian family would diet. Because that’s what we do. We indulge, then punish ourselves for being “bad.” But cancer knocked on our door in 2009 and had other plans. Cancer left our family begging for just one more bite of anything, even that dreaded fattening chocolate cake or that big greasy hamburger smothered in cheese or a big dish of carb filled pasta! Oh how my dad dreamed of having just one more plate of Sunday macaroni!  But cancer said, “No, not today, not tomorrow, no more eating in this life.”

The week before my father died I had to suction his spit from his mouth because he was too weak to do it himself. I bet you never knew they had a machine called a suction machine. I didn’t.  It’s basically a long tube you stick down someone’s throat and it pulls out all the gunk they can’t cough up.  I’m not sure what’s worse the deafening noise of a machine sucking the gunk out of someone’s mouth or the sounds of your larger than life father choking from a tube being stuck down his throat.  And when I was done with this medieval contraption I couldn’t even offer him water or a sponge soaked in water to relieve his VERY dry mouth.  All I could do was put some lip balm on his lips and pray that it would offer him some relief to the dryness on his lips and he would forget about his dry mouth.

The night before he died he asked me for a glass of water and I had to tell him no because everything he ate and drank aspirated into his lungs. I hugged him and we both cried. I denied my dying father a lousy glass of water. I’m haunted by the sounds of my sweet father’s voice asking me for a glass of water on his death bed.  Maybe someday I can forgive myself for saying no. Despite my rational mind knowing if I gave him that glass of water I would have caused great distress, my heart hurts knowing I denied my dying father something so simple as water.

So I will not be dieting and depriving myself of foods I enjoy.  Not today, not tomorrow, not in this life.  I would much rather workout and indulge in the foods that I enjoy.

Cancer gave me a front row seat to witnesses her destruction. Cancer forced me to witness my larger than life father die starving to death. Cancer is a real bitch.