Dos and Don’ts When Someone has Lost Her Only Child

Dealing with someone who has experienced an unspeakable loss (of a baby or child of any age) is often difficult for friends and family. Here is a quick guide for dealing with those who are suffering. These are my experiences, all are true. My son died  of gM1 Gangliosidosis after 15 months and three weeks of life. 

PLEASE DON’T SAY:

  • “Are you trying to have another one?” -As if a replacement will help.
  • “What did you do to your HAIR, I HATE it!” -shouted at me  the day after my baby died, as I opened the door to a now departed relative. She had avoided me while my son was dying.  This was in response to a short, dark hair cut. My hair was not a priority at that moment. Apparently, it horrified her and she just had to let me know. In short, use your brain.
  • “Oh, I forgot. The rest of us have NO problems compared to YOURS.” -a relative’s favorite response to any attempt by me to put any problem in perspective, even if I don’t mention my late son.
  • We KNOW!” in an exasperated tone, when expressing grief or your new-found (or old) pain at attending (or refusing to attend) baby showers or infant/toddler’s birthday parties. Sadly, very close family were the worst offenders.
  • “Maybe God meant for you not to have a child . . .” (after a death of a 15 month old and many years of frustrating, failed infertility treatments.) Again, a close relative.
  • “At least you didn’t have time to become attached.”  (Blink)
  • “You are so lucky you don’t have kids!”
  • “You can have another one, can’t you?”
  • “Oh, you can’t? Why don’t you adopt!?”
  • The disease (that killed your son) only hits 1 in 100,000? You should play the lottery!” {THIS WAS SAID TWICE}
  • “Wow, you have the worst luck.”
  • Nothing. The pain of people simply dropping out of one’s life as if their child’s illness  and death is contagious to their children is horrible. 
  • “Are you still upset about that? It has been # months/years.”
  • “You really should keep your grieving private. Just between you and  your husband.” (said to someone I know)

BONUS: If a child is dying: DO NOT SAY THE FOLLOWING:

  • Have you gained weight?  – another relative. Ignoring my child, who we brought to a family function because nobody wanted to come to visit us in the city because of the parking. We had to bring our nurse and a portable oxygen pack, but really, my weight was the REAL issue.
  • If you are an MD at a teaching hospital, please don’t make guesses at the baby’s life span to your med students as if he were livestock in front of his 23 year old mother.
  • Again, if you are an MD, don’t say, in response to a missing immunization card, “it’s not like he is going to be going to kindergarten!” Dr. Lynne Karlson of New England Medical Center‘s Floating Hospital said both comments to me. I was stunned at her lack of humanity. I still am all these years later.
  • Just keep praying for a miracle. (in a tone implying that we haven’t prayed hard enough–not helpful)
  • And my personal favorite: “You should be happy you will have an angel in heaven now!”

It has been a long time, but I still bristle at the thought of those comments.

I learned that the people you THINK will stick by you might not, but God always puts someone else in your life to take his or her place. I have seen it happen over and over.

Don’t Discourage Talking About the Loss

Sometimes, people who think that they are doing the grief-stricken a favor by urging them NOT to talk about the death are thinking about themselvesTHEY don’t want to be uncomfortable so they attempt to make the one who had to bury their loved one feel guilty for sharing their feelings. If you don’t want to listen, read a blog, or look at a photo, don’t. But, keep your feelings of discomfort to yourself and thank GOD that you only had a millisecond of it, and not a lifetime.

The last thing someone dealing with grief needs is guilt about how their feelings effect YOU. It is not about you. You will be dealing with grief someday yourself so try a little empathy.

Sometimes just acknowledging that the grieving woman is having a bad day is enough. Birthdays, death anniversaries, holidays are often very hard for someone who has lost a child. Some people go overboard, but most don’t. Tact and kindness go a long way here.

If you are dealing with grief yourself and don’t like the way someone else is dealing with their grief, recognize that people grieve differently and keep your negative comments to yourself.

DO SAY:

The best thing to say in almost all situations like this is “I am so sorry.”  A hug is nice, too. Or, if you are so inclined, “. . .tell me about your son/daughter.”  It won’t make your friend worse. If she cannot talk about it, she won’t. More likely, she will be delighted to tell you about her child. One of the worst things about losing a child is the fear that he or she will be forgotten, even to the parent herself. Talking about it at times, helps.

How are you getting along? If you need to talk, I’m here.

And mean it. Like almost everything in nature, feelings need to be let out. If they don’t, they fester and explode or worse, back up and become poison. Listen to your friend. Ask her how she is doing physically. Encourage her to take care of herself. Sometimes, grieving can lead to depression, drug or alcohol abuse, or even suicidal thoughts.

Keep an eye on your friend. You can kindly steer the grief-stricken friend to talk about other things if you think she is stuck. Or maybe get her a book like How to Go On Living When Someone You Love Dies, by Therese Rando. 

Isolation makes everything worse. If you care, listen. It will do wonders. Invite your friend to do things to get her out of the house. Scrapbook parties, exercise classes, shopping, comedic movies, walking your dogs–anything is better than sitting in an empty house.

Keep asking. Sometimes she won’t accept an invite. But she will come around. Don’t give up.

Take it from someone who knows. Losing friends along with a child just adds to the tragedy. Don’t let it happen.

I love you. Everyone needs to hear that. ❤

Advertisements

Happiness Loves Company, Too

People have asked me,  over the last 20 years how I get up in the morning while knowing that my child is dead and I can’t have any more.  They expect me to be some sort of zombie or in a mental hospital. My answer to them is that I just try to make the most of my life here on Earth because my son was robbed of that opportunity. It would be an insult to his memory to not be grateful for every minute I have here, so being bitter and miserable is not an option. Poisoning my body with drugs or alcohol has never been an option in my life.  I have little patience for people who do that and oddly, most of the people I knew who did that had a lot less of reason to do so than I would.

Some people have asked me how I manage to be cheerful. I even had a boss of mine ask me not to be so cheerful in the morning as I was bringing him his coffee.  He was a miserable, cranky, negative person but he wasn’t going to take me down with him. I kept smiling, and got a better job. Life is too short to be around people who can’t deal with cheerfulness. There is enough misery in the world. Why spread it around?

It’s easy to be cheerful if you count your blessings.

I learned how to count my blessings and deal with what life gives us with grace and dignity from my late Uncle, Billy Petrino.  A detective for the Town of Lexington Police Department in Lexington, Massachusetts, he had a unique approach to life and work that I have tried to adopt.  He died at age 56 of cancer. He worked up until a month before he died. He never lost his hair so he looked a little skinnier but he just kept going. That in and of itself was amazing and admirable.

What I took away from my many talks with him was that one of the worst things one can do to another is to assume you know all about them. To think you know everything they possibly could  possibly say about a subject and act bored. That kind of prejudice is corrosive. Keeping your mind and heart open to people, regardless of YOUR OWN past experiences is difficult but key to loving people the way God wants us to love.

My dear uncle Billy told me that the reason he did his job so well is because he treated every one who stood in front of him as if they were his only case.  As a detective, he dealt with the families of murder victims as well as people who were locked out of their car.  Treating them both with the same amount of respect and patience was his key to success.  The attitude that the person locked out of their car, while lucky they aren’t the family of a murder victim, still had a problem that deserved his full attention won him awards and commendations. He was just keeping his heart and mind open.  He was keeping cynicism away and a smile on his face.  I try to follow his example. It isn’t easy.

My dad, from the time I was able to comprehend speech, told me to “count my blessings.”  He told me at Christmas that there were people who had nothing and to remember how fortunate we were to have what we had.  He told me that there were kids who were deaf or blind, or couldn’t walk or were in Children’s Hospital fighting cancer and to “thank God that I am healthy.”

When I complained about never going anywhere in the summers, he told me to be grateful that I had a fenced-in yard with a pool because lot of kids without a yard to play in at all. When I complained that I wasn’t thin enough or tall enough, he told me I should consider myself lucky that I didn’t have a big weight problem or horrible acne, etc.. Dad ALWAYS had a answer for why I shouldn’t be complaining.  Bless him.

Sure, Dad’s approach flew in the face of my uncle’s (his brother) approach to life. He minimized whatever I was going through by comparing me to people going through “real problems” but he was partially right. Things can always be worse and that way of thinking has really helped me through some dark periods.

Thinking “it could always be worse,” I smiled when I had a baby who was suffering from a fatal illness because he was able to be held without pain. There was a mom in my support group whose baby was in so much pain she screamed at the slightest touch, regardless of the methadone they gave her for the pain.

I smiled because my baby while possessing the course facial features that are hallmarks of his disease, was still cute and cuddly and not severely deformed like the little baby in the waiting room next to us, whose skull was not fused properly at birth for some reason and whose eyes were not in the right place.

Nobody started at my baby with a tortured face. I had to count my blessings. I smiled because I had him 15 months and three weeks, while there are many who don’t get that long and some who couldn’t bear children at all.  So, I smiled.  I cried later. “I had the rest of my life to cry, why make my baby boy upset?”  I told myself. I still cry as I wander this world without him, but I laugh more than I cry now.

I just kept smiling and dealing with the blows of life with a “things could be worse” attitude. Thinking of Uncle Bill, I wring happiness out of whatever situation life throws my way. Sometimes it is hard to find the happiness and blessings in certain situations but it is always there.

I am still smiling because I can see, hear and think. I can smell the flowers in the summer, the crisp autumn air and the Christmasy snow smell in December. I can see the delight on my husband’s face when he sees that the dog has learned a new trick or when he has put the finishing touches one of his wonderful, homemade soul food recipes. I hear my beautiful friend Tanya’s voice on the phone, her adorable son cooing in the background.  I can see and hear my mom, sister and wonderful niece on Skype. My sister and niece do artwork that I can enjoy and my mom knits me scarves and blankets, though she is legally blind. I can behold my precious sister Lauren and her culinary feats. The list of things for which to be happy goes on and on.

Shockingly, this approach really makes some people really sick.

People roll their eyes at me. They say I am too cheerful.  One malcontent said she can’t bear to hear me talk. Some have even said things so hurtful that I cannot repeat them because it just spreads pain.  This has been said to my face by people who are just rude and behind my back–conveyed to me by people who thought they were doing me a favor.  Those people are not in my life anymore.

People who are powered by negativity and cynicism tend to be especially prone to what I call, “happyphobia.”

Happyphobia is the inability to be around people who have a good attitude. It is as if your happiness contributes to their misery. It a zero sum game to them. It is a horrible way to be, I’m sure. I find myself being empathetic and imagining how awful it is to be misanthropic and negative all of the time.

To them, I say, “Smile.” Life is too short to waste it on being miserable. If you frown and are negative, you will only get more negativity. If you smile, count your blessings and think of the happiness in any situation, you will get more blessings and at the very least,  a lot more peace.

An Old Blog About My Son

This is not a pity party. Just a reflection. I was a mom for 15 months and three weeks.


For those of you who don’t know, his name was Jamie. James Wyatt. His birth remains the happiest day of my life. His father and I were married and we were very happy. I had never been so happy in my life than I was being a wife and mother. I can honestly say nothing else has come close to matching that experience. I am thankful to have had it but I have accepted that it may never happen again.

He was born normal and seemingly healthy. He had 9s on his Apgar tests. Nice and big even though he was born a whole month early. He had stopped moving a lot so they thought my dates were wrong and after a month of monitoring me by ultrasound, they induced labor. “Are you ready to be parents?” the doctor asked. We said, “Absolutely!” 22 hours later, Jamie, the very first grandson on my side of the family was born.

Of course he was cute. He was kind of uncooked looking when he was born and yawned a lot. But he was still precious to me. Nothing out of the ordinary for a preterm baby.

When we took our baby home, the phone was ringing. Nobody knew we left the hospital. I knew something was wrong. My heart started racing immediately. The hospital called us back in because he needed to get some additional blood tests. He was so little and cute. He did not like the blood tests. He screamed in pain and to this day I get a lump in my throat thinking of that.

My OB called, to “check” on us and I thought that was unusual. I had this feeling everyone knew something we didn’t. He finally told us that a routine lab examination of the placenta arose some suspicions among the doctors but we were not told it was anything to worry about. “Just love him” we were told. Jamie was having trouble eating and startled easily, but his doctor thought it was because he was a month early.

We kept going to the doctor for little things. Eye infection, and some other things. I was so scared. I just wanted to be home with my baby and be normal but I was plagued by this nagging feeling of doom. I looked at his name, printed on his prescription bottle and suddenly pictured it on a gravestone. I was told that was postpartum depression. I couldn’t stop crying.

At his one month check up, pediatrician took a look at him, without really telling us his fears, and sent us to the hospital and we went to see three specialists. They admitted him immediately. We were scared and confused. They mentioned something about a “storage disease.” I foolishly thought of the storage warehouse where we put most of our belongings a few months earlier.

We were told it could be something that requires a diet modification or (after much pressing from me) something that could kill him before he is 2 years old. It would take TWO MONTHS for them to find out which. “Take him home and love him,” another doctor said. I started to wonder if that was code for, “you have a very sick child and we are too scared to tell you.”

After all of the tests were performed we took him home and waited. It was the scariest, longest time we had ever endured. Meanwhile, my little sweetheart was very easily startled and cried a lot. He loved to be held. I sang to him all of the time. He loved a certain James Taylor song, and “You Are My Sunshine.”

When he was 2 months old we were called in to see the doctor to discuss the diagnosis. The minute we got into the doctors office and I saw the social worker we had met when he was admitted I started to panic.

The doctor was rattling off all of this medical jibberish and I interrupted her and said.. “is my baby going to die?” Hoping she would say no. She said “yes.” My husband had to hold the baby because I collapsed in a heap. I wanted to run from this awful fact but I was trapped in that little doctors office with it all. Hearing my husband say, “I finally find someone I want to have a baby with and this happens.” Our marriage was never the same.

What happened after that was a nightmare. Telling my family was horrible. I felt like I was taking back a gift that I had given them. Telling my mother was the worst moment in my life, period. My whole family was in grief and distress, but as I have shared previously, after we made our phone calls and cried and grieved that I was not going to get to be a Mom after all, I had had such trouble getting pregnant to begin with and it is genetic.. and I knew in my heart I wouldn’t have another.

I heard my baby crying. He was still here. He needed me. I had to be strong for him. I looked at him, tears in my eyes, while he ate. I decided right then and there that he was going to have the best life I could give him and just because I know a little more about his future than people knew about mine, I was not going to treat him any differently if I could help it.

He needed to eat. He needed care just like any other baby. I made sure he got it. I had to be there for him until the very end. I owed him that.

I learned from other mom’s that had babies like this (through www.ntsad.org) that most babies with his illness (for more info on Gm1 Gangliosidosis click the link above.) succumb to pneumonia from aspirating food. Their muscle tone slowly fails and causes everything to shut down. Their brain stem gets affected by the disease and interferes with breathing, heart rate and other basic functions.

Thanks to my nurses and me, he never had pneumonia, bed sores from being unable to turn over or anything preventable. He never lost weight. We had a feeding button installed when he was 5 months old. We were warned, by a fellow parent through NTSAD not to wait. I will be forever grateful for that advice.

He was lucid and happy, giggling a lot because we had his seizures under control early–again, we knew to to that from talking to other parents who lost kids to this illness. He never went blind. Or deaf. We were very grateful for that.

James was  the first baby with this to have been followed from birth to death and information about his life has been published in medical journals and it has helped other people, I have been told. It is a small consolation. It wasn’t all for nothing.

His father and I spent the last day of his life (when he was 15 months and three weeks old) holding him and singing to him. His family and all his “aunts and uncles” came to say good-bye. The doctor said he could feel the love in the room. We didn’t want him to be scared. Crying was discouraged in front of him. He died when I left the room for 2 minutes. I rushed in and saw him expel his last breath. I fainted. We held him and cried. My father gave us a ride back to our apartment. It was surreal. I wasn’t a mother anymore.

We went home to our empty apartment that filled up slowly with friends and family. That was the worst feeling. Going back home and having him not there. Worse even than thinking I was going to “see” him again in the funeral home, only to see him look like a doll, dressed in an outfit his Aunt Holly gave him and the baby ring given to him by my grandfather, who died a few months before Jamie did. I have never been able to get used to that “quiet.”

We all said good bye.

It was the hardest thing I ever had to face. I pray that nobody who reads this ever experiences this kind of loss. But if you do, there is life on the other side.

It never goes away but you can live a life and go on. I am proof. I laugh almost every day.

I remember all of the happy times with him. How he smelled. His beautiful blue eyes. His curls. The chubby cheeks. How he giggled when I made raspberry noises on his chest. How he laughed out loud at his father making squeaky noises. How he loved the song “Close Your Eyes” by James Taylor. I sang that song to him every day. I sang it at his memorial. He was such a tremendous gift.

I thank God for him. I don’t dwell on it but he is part of who I am. His life was short, but powerful (kinda like me). I am honored to have been chosen to be his Mom.

Now, many years later, I try to live my life to honor him. I am lucky to be here and want to make the most of my life because I have one and his got cut so short.

People say I am still a mother. I am HIS mother, but I am not a mother anymore. I miss it desperately at times. Other times I say to myself, “maybe he was all I was meant to have and my job is done.” God has another plan for me.

I have been unable to bear children ever since. His life was a miracle according to my fertility doctors. I am starting to believe he was a real angel, sent to me for a reason. People call me strong. I just did what any good mom would do.

We passed out the following poem at his memorial.


Little Angels


(author unknown)


When God calls little children to dwell with Him above,


We mortals sometime question the wisdom of His love.


For no heartache compares with the death of one small child,


Who does so much to make our world, seem wonderful and mild.


Perhaps God tires of calling the aged to his fold,


So He picks a rosebud, before it can grow old.


God knows how much we need them, and so He takes but few,


To make the land of Heaven more beautiful to view.


Believing this is difficult still somehow we must try,


The saddest word mankind knows will always be “good bye”.


So when a little child departs, we who are left behind,


Must realize God loves children, Angels are hard to find.


Thank you for reading if you got this far. Please don’t think this is what I am all about. I just have to remember once in a while.