Me, Who?

This is a look back. My life today is wonderful and I am grateful to God for every day.

It’s not easy to know what is true for you or me
at twenty-two, my age. But I guess I’m what
I feel and see and hear, Harlem, I hear you:
hear you, hear me—we two—you, me, talk on this page.
(I hear New York too.) Me—who?
—Langston Hughes, “Theme for English B”

I read those words as a young woman, in college for the first time at around twenty three years of age. I was too old to be in college, I thought.  My 15 month old son had just died after a lengthy, fatal illness. I didn’t fit in anywhere. The question, “Me—who?” was one I was asking almost every day.

I was definitely a daughter, sister, niece, granddaughter and friend. But the question didn’t go away.

There was a reason I questioned my identity so much just then. My sense of self was damaged from the ordeal of caring for and losing a precious baby. I was unsure if my husband wanted any more children and it was unclear by my history of infertility if I could even have another child even if he wanted one. I wasn’t even the same woman he married. I was stronger. Fearless in someways but scared of more loss but really, what could be worse than losing your child? I found out. Losing your child and your husband within a few years of each other.

Was I still a mother? I was no longer a wife. Would I ever be a mother or wife again?

I was every woman’s worst nightmare. I was happily married, gave birth to a beautiful baby boy and even though he looked perfect, he had a fatal disease that took his life. Worse still, it was genetic between my husband and me. Meaning, if he met a woman on the street and had a child with her, he would have an almost 100% chance of having a healthy child with her.

And he did just that within a few short years after I read the question, Me—who? I was replaced utterly. She even worked at my old job. Had a healthy child for the man I once adored completely. The man whose child I bore. My heart broke. I was a failure as a woman in that man’s eyes and I feared, the eyes of those closest to me and even strangers on the street. Friends chose their sides. More loss. I rallied and made a comeback but I was hollow. Nothing I was doing then made any sense until I finished college.

It took me years to heal.

Am I still a mother? Before you say, “of course,” think about it. You are sitting with a bunch of women who are chatting about (complaining about,usually) their children and the subject of childbirth comes up. Someone describes a situation you encountered in your labor and delivery but do you share your story? Or do you become quiet because you don’t want them to ask you the typical questions such as, “how old are your children?” or “how many do you have?” You don’t want to see their horrified or shocked reactions to your truth. So you stay quiet. You are a mother in secret.

Then when someone learns you had a child who died and your husband left you for someone he worked with it is awkward. People so don’t want to be you they avoid you. They don’t want that fate!
Nobody says, “when I am a little girl I want to bury my only child and have a man I love grow away from me and leave.” It can be a very lonely place. I am someone nobody wants to be. Ever.

But, I don’t let it get to me. I am my son’s mother certainly and my identity has been shaped by my son’s birth just as surely as any other woman, but people don’t want me to own that part of myself. It makes them uncomfortable. They want me to move on. They want a tidy ending for me. It makes them angry at me at times. It sounds kind of mean but it happens.

In a way I got my own happy ending. I am grateful to God that I finally found a man who loves me even though I cannot bear children.  He actually just wants me. So, the answer to “Me, who?’ became clearer.  But the “mother” question nags at me.

So, what am I to do?

I pretend that I am just a childless woman who has dogs, a cat, chickens and a loving husband. The mother part of me is still there, but not doing anything, like an old, rusted car in the yard.

Happiness Loves Company, Too

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.

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.

Laughing the Pain Away/Plans

I laugh inside when people recite their plans as if they have complete control over their destiny.

I had plans. After a really stressful childhood and adolescence I couldn’t WAIT to be an adult. Specifically I planned to be a wife and mother. I fell head over heels with someone, got married in a proper “church” wedding, and after being told I might have a problem conceiving, I had a beautiful baby. I felt truly blessed. We had moved to a suburb of Boston into a townhouse to prepare for him. Our condo in the South End of Boston was too small. We put it on the market.

As I discussed in an earlier blog, he was diagnosed with a fatal illness (NTSAD’s site). We quickly moved BACK into our tiny condo in Boston. I loved that apartment but was about 650 square feet and had no washer and dryer. I still felt blessed. I felt God was with me, helping me function. I know that to be true.

Our home was very close to the Floating Hospital and Jamie’s doctors.

It is called the Floating Hospital because it used to be on a boat.

Anyway, I thought I would be a mom. I was. But not for long. I didn’t want to hear about God’s plan at that time. In fact, I was pretty mad at him. I had my own plans. I wanted to be a mother. I wanted a healthy child. A happy marriage. I was losing it all.

While I was struggling through the nightmare surrounding the gift of my son’s existence, I relied on laughing. We had no cable television and there was no internet. I watched “Late Night with David Letterman” and “The Simpsons.” Back then there was a comedy channel called “Ha!” and then one called “The Comedy Channel.” There was no other way to live. My friends, nurses and I found something to laugh at every day, even in the face of one of the most unfunny things we had encountered in our lives.

I did cry. I cried when I looked at my little baby, struggling to smile, all the while trying to burn the memory into my mind, knowing his smiles wouldn’t last. I cried when he had surgery. After I brought him back after he nearly choked to death. Sitting in the dark on his rocking chair after getting him to sleep after a long night of seizures. But I needed to laugh too. My laughing made him laugh. I always smiled at him. I never wanted him to see or hear me cry. I discouraged people from crying around him. I figured I had the rest of my life to cry and only a short time with him.

Then, he died. Not a mother anymore.

New plan: Be a fundraiser and advocate for my son’s charity. After my son’s death, I did a lot of fundraising. Comedy shows and rock concerts with my (now ex) husband’s old employer (a radio station). I did it for a few years. That lead to selling advertising. I went to college at Emerson College and finished at the University of Massachusetts in Boston. It took me almost a decade but I graduated.

Next plan! I thought I would have a career. I did, sort of, but again, not for long. God tried to guide me but I went down the wrong path, apparently.

During that time, my husband decided he didn’t love me anymore and didn’t want children, despite going through extensive, painful infertility treatments and a home study for adoption. Hilariously, he took up with his boss’s secretary and had kids, one of whom looks a lot like our son. We were completely replaced.

I never fully recovered from that (it took me over ten years) and ended up wasting a decade with someone even worse for me. I will not waste time writing about that person. I consider that time as officially “lost” and not worthy of discussion, but the only thing I learned from that experience is that I officially cannot bear children.

New plan: Childless Career Woman.

So all I had left was my career. Until I got sick. Really sick. Not “cancer” sick. Just “pain so bad most people would kill themselves, sick.” I am dizzy almost very day. I cannot hear out of my left ear very well. I was on pain medication that made me sick until they found the right kind. I went to college and wasn’t using my degree. So much for THAT plan. Funny movies and cartoons helped ease the pain and despair but something had to change. I wasn’t laughing much anymore. The pain was all I had. I lost everything. Again.

New Plan: Self Sufficient Disabled Person with two dogs.

The cold weather and financial reasons drove me South. I couldn’t stay with family. I felt completely alone there. I had an online friend in Kentucky who told me that it was really cheap to live there and I could have an apartment for me and my dogs-who were the only creatures I could really count on at that time to stand by me. I could support myself. So I did it. Really, what had Massachusetts afforded me? With the exception of my sister and my friend, Tina, every close friend I ever had moved away or took sides in the divorce. So why not me? I wanted to support myself and my dogs. I thought God’s plan for me was to be alone, with my dogs. So, off we went.

I put what was left of my belongings (long story) into a moving truck and loaded my car with my precious dogs and clothes and drove the longest way I had ever driven in my life.

I felt like someone was guiding me. Like I was walking through the dark and feeling around for the walls until you find the light switch. I had no idea what lay ahead but it had to be better from the pain, both physical and mental, I had endured.

As we drove into the rolling pastures, the temperature rose and the sun was shining. We were driving to an apartment I had only seen in photos. I couldn’t help but smile.

I laughed as Finnie (my little dog) barked at the cows. I was in a place where nobody was hurting my feelings, questioning my illness, making fun of my hearing loss or lack of balance (implying I was drugged out), stealing my medication, or criticizing my very existence and there was an excellent chance that I would meet some nice people.

And I did. I met Tanya and her husband, Ben.

Then I met Aaron and his wonderful family and friends.

Once that happened, we have been laughing and not looking back. God led me here and I finally feel home. I trust Him and His plan. My plans were all wrong. God is driving the bus. It is better to sit back and enjoy the ride.

An Old Blog About My Son

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.

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 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.