20 years have passed since I gave birth and buried Donovan. With intention, today I created space to celebrate and honor this monumental life changing exquisite experience of once being a young woman whose childhood dream got turned upside down and inside out…
All I wanted was a big family. I don’t recall ever having any other calling or inspiration or desire for anything more than that as a young girl. I just wanted a half a dozen children that I could nurture and teach spiritual lessons of love and my end game was… when they were adults they would all come back home for Sunday meals. And the children who grew up to travel the world would travel back home on holidays. That was the big dream. So when I met a divorced man with three small children, it fit right into the dream. It was really that simple. So this man that I married would gift me with two more biological boys. For a brief period of time we had 5 children all together. His or ours, it didn’t matter to me who was biological and who wasn’t. I was literally one little human away from the dream of “a half dozen.” 16 days later, Donovan would die and so would the dream.
Donovan was born with Trisomy 18 and two holes in his little heart.
THE MEDICAL FACTS:
Trisomy 18, also known as Edwards syndrome, is a condition which is caused by an error in cell division, known as meiotic disjunction. It's an extra chromosome.
At conception, 23 chromosomes from the father and 23 chromosomes from the mother combine to create a baby with a set of 46 chromosomes in each cell. A trisomy occurs when a baby has three #18 chromosomes instead of the normal two. This is something that happens at conception.
Typical characteristics of Trisomy 18 include:
- Heart defects:
- VSD (Ventricular Septal Defect): a hole between the lower chambers
- ASD (Atrial Septal Defect): a hole between the upper chambers
- Coarctation of the aorta: a narrowing of the exit vessel from the he
It was an emergency C-Section where the baby was immediately taken away. In the recovery room I woke up to my husband leaning over me. His pained expression caught my attention through the haze of my drug induced sleepy state. I looked around for Donovan, not understanding why he wasn't with me.
My husband tried to delicately explain to me there was something seriously wrong with the baby. Yet, the more physical indicators he shared with me, the more irritated I became.
I heard "he's only 5lbs," "His eyes are very small," "His thumbs are bent in the wrong direction." And in my mind, none of those things meant anything other than maybe he wasn't the prettiest baby ever born and so what if he wasn't -we would love him wholeheartedly no matter what he looked like. My irritation stemmed from ignorance whereas, my husband had more information. He was conscious while I was coming in and out of consciousness due to surgery.
"I want to hold him." I said. And I was told I couldn't and I became more and more irritated.
Hours later they wheeled me into a room where Donovan was and it wasn't until this moment that I realized this was bigger than a small set of eyes or thumbs that were not pointing in the right way.
Donovan was hooked up to a mini machine inside a glass incubator. The kind where the only option to touch him was with the gloves attached to the glass. Touching your new born through sterilized gloves is its own kind of torment. I still didn't understand what was happening, I only knew it felt cold and wrong to not let him be in my arms.
Eventually we were told they would be taking him over to Children's Hospital of Philadelphia and due to my surgery, I would be staying where I was. That evening, as I used a breast pump in a dark room with no baby, I could hear and sometimes see, babies being wheeled into the other moms rooms. It was a new and deeper kind of torture. I cried most of the night.
The next day I demanded to be released, reluctantly, my doctor agreed to release me. She gave me a lecture and a wrap with Velcro for my incision. As we drove into the city, I began to meditate. I didn't know I was meditating at the time. I just knew I had to work with the piercing pain occurring in my own body, I had to breathe love and acceptance into it because there was something way bigger and more important than my pain waiting for me at children's hospital.
At children's hospital, we were taken to a conference room where all of the doctors sat with us to explain the diagnosis.
Our options were
1. They could operate on his heart and he would very likely die on the operating table and due to His genetic disorder he would not be able to heal from surgery
2. We could take him off of the machines and let him die naturally.
Both options didn’t feel like options, however, you think about the cold sterile environment of a hospital vs the loving energy within your home and the choice becomes simple. He would die at home, naturally in a loving warm environment.
When we decided to take him off the machines, many of our immediate family was in the room with us, all standing around watching as I sat in a rocking chair holding Donovan for the first time since he was born. The sadness penetrated the room as we held him and waited for him to die. I was in a greedy state of mind. It was all very intense. Every moment felt critical. If the only thing I could ever do was hold him in my arms when he died-that is what I needed to do. Period. This is when my obsession began to form around him needing to be in my or his father's arms when he died.
This was when Helen, the nurse floated in. She observed all of our gloomy faces and essentially told us that "this little guy isn't going to die today and could even be around for a couple weeks, maybe even longer."
To this news, we all looked at each other and all we could do was laugh. We were laughing at ourselves and this may be one of those "you had to be there" moments.
And this is when I eased up and let others who loved him, hold him.
Eventually we moved into a different hospital room. We had nonstop visitors and around the clock support.
We were told we had two more options.
1. Donovan could stay at the hospital and die there
2. We could take him home to die and home care nurses would come in to monitor him.
All I really heard was "you can take him home," so that's what we did.
First someone had to be trained in inserting Donovan’s feeding tube. I elected my husband for that training. I couldn't bare doing it. At the time, the very thought of sticking a tube down a baby's throat to his little stomach wasn't something I could tolerate. He needed this tube because his heart was too weak to even suck on a bottle.
We brought him home and settled in. We watched our 3 year old son Joseph have the joyful opportunity to be a big brother. We were living moment to moment. I loved being home with my two boys and I had hoped for several weeks, maybe even months.
On the one and only morning where everyone went back into their lives and I was home alone with my two boys for the first time, Joseph (my 3 year old) was still sleeping and I put Donovan in his cradle because he was sleeping too. I was so tired, closed my eyes and drifted off to sleep. When I woke up-I woke up in a panic for having slept. I looked over at the cradle and Donovan was not in it. I lifted my head up to see Joseph sitting on the floor watching T.V. And next to him there was Donovan sitting in his baby seat, strapped in perfectly! Two brothers hanging out watching T.V.
Joseph looked up at me excitedly and said "Mommy!!!! Me and baby brother are watching T.V. Together. He told me he wanted to sit in this chair so I put him in it."
I blinked a few times and calmly said "Can you show mommy exactly how you lifted Donovan out of his cradle?"
Proudly, Joseph got up and mimicked what he did. His execution on lifting a new born out of a cradle was absolutely perfect.
Toward the end:
A few days later Donovan started having apnea attacks. His heart would just stop. Then it would start again.
The first time this happened I was holding him and he just stopped breathing. I felt stunned. The next thing I knew he was breathing again and that's when I lost it. I remember vividly being out of my mind and thinking "Either go or stay. Either breath or don't breath.” I didn’t know what this was or that this was even possible.
And this became the new normal. The nurse told me gently "this means he's progressing.” It was the first time I’ve ever heard the word “Progressing” in a context that was not good and we all began to flow with this new normal. I’d be holding him, talking to someone, he would stop breathing and I would put my hand on his little neck and he would start breathing again and I would continue on. Being in the flow of the progression of death and those progression points becoming your new normal… is an interesting process to experience. Particularly when you are the mom. Love leads, even though intense grief and overwhelm, or the profound sorrow and confusion, you lead with a deep profound love through it all.
On the morning of February 25th, 1995 I fell asleep with Donovan in my arms. When I wake up, he was gone. The bone chilling sound of a young mothers wailing would be the sound everyone in the house would wake up to. No explanation necessary. The moments following this would probably still be a complete blur to me, if I wasn’t a true warrior with a deep desire to restore all of my memories, no matter how intensely painful they may be.
My grief began to transition into a level of rage that was almost instantaneous and mostly unexplainable. My desire for my big dream was buried with Donovan. I blamed my husband for Donovan’s death, I blamed God too. I wanted nothing to do with my husband or God. I hated them both until the hate turned into numbness and I felt nothing. So I left my husband and I ended my relationship with God too. I mean after all, how could he let this happen? It took me a very long time to put the pieces of my fragmented sense of self and spirit back together.
By the time I was healed enough or sane enough to apologize to my ex-husband for the extreme way I shut off to him, he had moved on and remarried and had a new life. He wasn’t interested in completing anything with me and although I expected that response from him, I did it anyway. Because what if some place deep in his subconscious, it did actually matter? I may never know and that’s okay
I have so many wonderfully beautiful Donovan memories. And I have all of them because I’ve been willing to walk through the fire of my grief and rage and come out the other side to where I can experience the gift and the beauty of this exquisite celestial child.
Happy 20th Birthday Donovan!