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.