Laughing the Pain Away/Plans

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

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.

There is Nothing New Under the Sun: Bullying

REPOSTING FOR BULLYING AWARENESS

Hi. I am Cheryl. I also answer to “Cherie” and “Bunny”

Me, at 16
I was 16. Notice my dad had me wearing a Massachusetts Marksman Assoc. T shirt.

After decades of ups and downs, (really bad downs, at that) living in Massachusetts I decided I needed a change. I moved to Kentucky for reasons that will become clear in future blogs.

Today, I am thinking of “bullying.” I grew up in Bedford, Massachusetts. At the time, it was viewed as sort of the bastard child of Lexington and Concord as it was in the middle and not as historically significant. Now, of course, most of us who grew up there can’t afford to live there. But, back in the ‘day,” it was a fairly respectable place in which to grow up. 

We lived in the poorer section of town. My dad was a cop, which made my twin sister and I even more conspicuous than twins usually are in a small town. He stopped people speeding and emptied out their beers at the boat landing. We were called “pigs” from the time we were in 4th grade. That made our lives hard.

If that wasn’t enough, girls hated us because we were blonde, identical  and somewhat pretty and “developed”early. A girl in sixth grade called me ugly and I believed her. At the time I thought I was a troll. A jilted “boyfriend” of my sister’s who was a year ahead of us spread rumors all over  John Glenn Junior High that we were “easy.”  This made the girls happy to hate us before even meeting us. I remember all of their names. I wish I didn’t. 

Boys liked us because we looked a lot older than we were. This made the girls loathe us even more. One girl actually accused me of “stuffing my bra” and finally one day I took it off under my shirt to prove it wasn’t stuffed after she and the other girls she hung with cornered me in the bathroom in sixth grade. I remember everyone who was there. They seem to have hoped I forgot. Some are Facebook friends. I have forgiven them. 

My mother told me not to sink to their level. My Aunt told me they were jealous. Jealous of what?? I just wanted to be left alone. I didn’t look like any of Charlie’s Angels so I thought myself a beast.

Then there was the boy who liked me so much he punched me in the face when I said I liked his friend better. He cracked my cheekbone. It did wonders for my self esteem. His dad was high up in town government so nothing was done. My dad was a policeman. It made no difference.

Junior high was more of the same. Being called a ‘slut” before you know what one is was horrible. Seeing your name on the bathroom wall is something you never forget. I remember who did it and why. It made me very intimidated and withdrawn for a while.

One of the people who did this to me actually laughed about it at our 10th high school reunion. She said it was because I ‘got all of the cute boys” and that is why they gave me a hard time. I asked her if she would like to chip in for my therapy bills. She thought I was ‘SO FUNNY!” I was only half joking.

I have no idea why, but by ninth grade I was my own person and thought didn’t care about these girls anymore. I made friends with boys and briefly had one boyfriend. After that ended, I just hung with my “boy” friends and worked on cars with them. First theirs then my own. I learned about computers because in shop class, the teacher thought my time would be better spent learning how to create a database than to rebuild a lawnmower engine. I joined that class to be away from the girls who hated me. And hate, they did.

One girl put the word out that she was going to “kick my ass.” One day after school, she approached me and two friends of mine. Bullygirl decided to pick on my friend first. She grabbed her by her face and dug her nails in to her flesh. Too bad for Bullygirl that I was born with a sparring partner (my twin) and my Dad taught me how to fight. After I told her to leave my friend alone, she turned on me. She went to punch me, I ducked and proceeded to kick the living crap out of her. She went away bleeding and saying she was going to sue me.  For reasons I will never understand, she wanted to be my friend a year after that. She will be getting her own blog. 

Ironically, the person who I was sticking up for turned on me, too. She turned into Bullygirl 2 and smashed my sister’s head into a locker. Why did they never just go at me first? I lost it and mopped the floor with her, earning a suspension from high school. This girl and her older sister never let up. They keyed my car which I had just painted myself with the help of my “boy friends” and they chased us all over town in their cars.

Their mom was a local prostitute who hung out in the local hotel lounge and was crazy so she let the BullySisters do whatever they wanted. It got so bad that I had to take them to court to get a protective order. The court granted me the order and told them to stay away from me. I didn’t want anymore fights or suspensions. I just wanted to live in peace. My family was falling apart but that is a story for another blog.

My point is, that “bullying” has been around since the beginning of time and will continue if parents and teachers don’t do anything. My parents tried to help but no teachers or administrators took it seriously.

They slashed our tires. They constantly called me a slut, usually across a parking lot or hallway. One day, one of the BG‘s had her brother loosen the lug nuts on my old Camaro’s brand new rims. My “boy” friends worked at a garage and had them put on with a hydraulic thingamagig so they were definitely loosened on purpose.  After my tire fell off, thankfully I was only going 30 miles per hour, I took my Dad, the cop, to the BG’s.

When confronted, they laughed and said they did it but I couldn’t prove it.  My father was never predisposed to be on my side so he really didn’t do much. So, feeling completely alone, I got out of Bedford. It held nothing but bad memories for me. I lived with my Aunt so I could attend another school. I had one friend in Bedford and I missed her, but I needed to get away from the craziness.

Lexington was the next town over and was a much bigger place. I loved it there. The Bedford Bullygirls drove a big truck (her boyfriend’s)  over to Lexington High to key my car.  They did damage the car but thankfully, I saw them at it from my computer class and contacted the police.

They were supposed to be in school then so they got in trouble. A policeman who was friendly with my Uncle, a detective, put a stop to the nonsense. They finally left me alone. I made good friends that I still have today at Lexington High and graduated on time. How I was able to concentrate on my studies is anyone’s guess. I still have nightmares about not graduating on time.

If I had it to do over again, I would have gone to the principal and NOT engaged in fights. I hope girls today have more sympathetic teachers.

Epilogue:

The kid who punched me: Lots of arrests. Total loser.

The girls who harassed me in elementary school? Let’s just say they have led interesting lives. Most are okay now. 

Bullygirl 1–Dead of drug overdose after several abortions and two children, one born addicted.

Bullygirl 2-Pregnant at 17. Gave birth sometime after graduation. Whereabouts unknown.

Bullygirl3/Brother: Both did jail time for drug charges. In and out of trouble with the law

Bullygirl4-who ran me off the road–dead in a wrong way crash, while driving drunk that killed an innocent man. What a legacy.

Me? I went to school after my son passed away and it took almost a decade but I got my Bachelor’s in English from UMASS Boston. Working my way through most of the time and raised lots of money for my son’s charity.  I got As for the first time in my life. I could concentrate and actually loved my classes. I relearned all of the skills I missed while being constantly anxious and harassed in high school. 

I am happily married. 

The lesson I learned is to be true to myself and God will sort out those who are evil.

And He will. That is his job, not mine.