It was on this day, 25 years ago, that our infant daughter Margaret Rosemary died in our arms at home in the bed that we sleep in every night. I still wake up sometimes and feel her presence with us in that space. She will always be here in our house and in our hearts. She is always with us, as her blue urn is in our bedroom. And one day when I die, my wish is for us both to be buried together in the cemetery on the reservation where my ancestors sleep.
She was born on August 10, 1997 at 1:48pm, at a free-standing birthing center, attended by nurse midwives. She was 4 lbs 14 oz, born late at nearly 43 weeks of gestation, but she needed that extra time to be strong and ready.
Shortly after her birth, we named her and filled out details of her birth certificate while her APGAR score was determined, and the score was worrisome. I know, because the midwives chose to never share that information with us. I know they didn’t want to cause a panic, but the thing about panic is that it always arrives eventually.
A doctor “stopped by” to have a look at her, and we were told she would be taken by Life Flight to the nearest Neonatal Intensive Care Unit. As Maggie’s mother wasn’t in any fit state for travel, I went with Maggie to the hospital. After hearing the words “Life Flight,” I sort of expected a helicopter even though I knew it was only a short trip to the hospital. I’ve never gotten to ride in a helicopter, and I’m not exactly sure that I ever want to. Maggie was bundled up and placed in a small lucite container with tubes and oxygen connected, as though she was a tiny E.T. being whisked off to a government lab for study. We were loaded into an ambulance and drove casually to the hospital, I don’t think they even put on the flashing lights.
We arrived at the hospital and the NICU staff explained they would evaluate her, hook her up to IV fluids, and generally do things that parents would find alarming. Frankly, they didn’t want me present because people freak out. I am not the freaking-out type, but they wouldn’t know. So I sat by my lonesome in the waiting room, contemplating what other surprises lay in store ahead. By the time a baby is born, her parents have very likely laid out at least a vague game plan for who she would be. Maggie would have her own ideas about who she was. She would have a real knack for kicking your plans in the butt and teaching you how to live life on her terms.
As I sat in the waiting room feeling kind of sorry for myself, a family of about 8 people came in and held hands in a circle to begin a prayer. They didn’t pray though, they just paused and looked at me, and I realized they left an opening for me to join hands with them. Without a word, I got up and joined them and they prayed for their loved one and their recovery, and also kindly prayed for me and asked me to name the loved one I was praying for. These were really the first people Maggie was introduced to.
After about an hour I was collected and taken into the NICU to find our daughter connected to tubes and oxygen. The NICU doctors explained that there was concern about her heart from chest X-rays and doppler flows, and it appeared that there was a correctable problem called a Patent Ductus Arteriosis where a tiny shunt between heart and lungs normally shrivels up when the lungs start processing air. Before too long, Maggie’s mom arrived and we both got to hold her and learn how to do Kangaroo care — placing the baby on our bare skin for warmth and contact.
In the ten days that followed, every day revealed new problems: confirmation of the Patent Ductus Arteriosis, discovery of a Ventricular Septal Defect and an Atrial Septal Defect, neurogenic bladder, muscle tone problems, and feeding and swallowing issues. A karyotype was ordered because the pediatrician suspected a genetic syndrome, and days later the diagnosis came back that Maggie had a genetic anomaly called Trisomy 18, or Edwards’ Syndrome. Most Trisomy 18 babies do not survive the birth process, and of the survivors, more than 90% of Trisomy 18 babies do not survive their first year of life.
We had a troublesome meeting with a genetic counselor who only seemed to be saying that if we had undergone prenatal genetic testing, we could have avoided this “problem” which was deeply upsetting. You just don’t tell the parents of a beautiful baby girl their daughter would have been better off aborted. I was very put off by this and asked questions that would better serve our circumstances like, how should we prepare to care for this child? What will her needs be? The genetic counselor seemed to be of the opinion that Maggie would be a vegetable, which also wasn’t very helpful.
We had discussed at great length during the pregnancy that despite being raised Catholic we thought it might be more meaningful for us not to baptize our children as babies — after all, God has no grandchildren. But faced with Maggie’s dire situation, we called for the priest from the nearby Catholic church to drop into the NICU and baptize our daughter. I do believe that sacraments are a celebration in a time and place and in the context of a community, of something that is always true. It is always true that God wants to save his people, therefore I have always believed that unbaptized people are always welcome in heaven. Performing a baptism is enveloping that salvation in a community of love so that everyone becomes a participant in the salvation of the baptized person, whether child or adult.
It puts me in mind of Black Elk Speaks, where Black Elk explains that if you have a dream or vision that is good for the community, you should dance it with everybody and tell the story so that in hearing it, everyone will, consciously or not, bring the dream to reality.
So we baptized Maggie in the NICU with a Catholic priest, who afterwards gently reminded us to have our mountainside wedding convalidated in the Catholic Church. Always good to have your bases covered I guess.
The baptism was like magic. Maggie started doing so much better and the NICU finally started to talk about us taking our daughter home. We had to get a special lying-down car seat for her, and we were especially nervous about how to keep her alive. She needed around-the-clock care. We had to learn how to put in a nasogastric and orogastric tube so that we could feed Maggie breast milk, since with her heart running a constant marathon, breastfeeding would be difficult if not impossible since she needed to breathe. We also had to learn how to massage her neurogenic bladder so that it would empty and not cause urinary tract infections.
And before we were even quite ready to take off our training wheels, we were driving our baby home and looking at each other nervously. But having Maggie at home was so much more serene and relaxing. We had to sleep in shifts because we had to follow a strict schedule of feeding, changing, and engaging with the baby so her heart would get enough calories for her to grow and not waste away.
Also once we were safely home, all the family began to drop by for a visit. Maggie charmed every single one. She had a way of looking absolutely lovingly at whoever was holding her. She was just a bundle of love.
We were getting really comfortable with the day to day details of caring for our daughter and tending to her needs. It required us to both be fully capable parents, and we were often exhausted, but we learned to take over and give each other breaks to see a movie, visit friends, or go grocery shopping. I can’t tell you what a powerful life lesson that was. In retrospect though I was a sweet person, I was not mature enough to handle caring for a child and a family. In very short order I had to learn to be supportive and helpful. I think if my first child had been anyone but Maggie, I would never have been the father I was to my other three kids. I certainly was overly career-oriented and didn’t put much emphasis on work-life balance before Maggie.
Before having our child, my wife and I interviewed pediatricians. To tell the truth, I was less engaged at that time so she did almost all the legwork, I just had to show up and look pretty. We decided on a pediatrics practice that was just amazing. Shortly after Maggie was baptized we called them and explained that our daughter had Trisomy 18 and we weren’t sure if they were prepared for that. They pretty much laughed and said, “we have a nurse A. who has a 27-year-old daughter with Trisomy 18 and she literally wrote the book on caring for Trisomy 18 children.” This was such an unlikely coincidence that I still wonder about it. The pediatrics practice was so helpful for us in seeing our daughter on short notice for her frequent care needs. We will always be grateful to them for that.
Despite both our parents living in Virginia, it seemed like every weekend one set or the other was visiting to give us relief and spend time with their granddaughter. My in-laws, Grandma K. and Grandpa J., loved cuddling with Maggie and learned whatever they needed to learn to send us out on a dinner date and give us a bit of normality in our lives.
We had a vintage pram that Maggie enjoyed rides in, and it also served as a daybed where she could sleep beside our bed. We were so in tune with her breathing that if it changed at all, we would both wake up in an instant and be ready for anything. It is strange how attuned you become to even baby breaths.
Not unsurprisingly, Maggie was nowhere near the vegetable we were led to believe she would be. She had strong preferences and made the most unbridled expressions of joy, annoyance, or wonder. I don’t think anyone expected her to have such a strong personality.
My sister does quilting and made the most beautiful bunny quilt for Maggie. Saying that my sister does quilting is like saying your heart does beating. She has about a thousand incredible quilts out there in the world, and this one stays in our bedroom now and always gives me a smile and warm fuzzies when I see it.
Maggie had a pose that we called “baby power” where she would raise a fist in the air. I used to wonder why she made this pose; was it a feelgood stretch or some kind of statement that the power of babies cannot be denied? Then I caught a photo of baby and mama sleeping in the baby power pose, and I realized maybe it was inherited from Mom.
Uncle J.D. lived close by and this is one of my favorite pictures of him being charmed by Maggie. She was so engaged with people, and would just stare into their eyes exuding love and admiration. It comforts me often to think of them together in the Sky World, Uncle J.D. going exploring with her and teaching her all his earthy and pragmatic life wisdoms.
Maggie loved sleeping on my chest, despite the fact that I burn like a furnace and we would both get sweaty. I would worry about her temperature regulation, and would also be super self-conscious about not falling asleep myself. So I spent a lot of long hours watching my little baby sleep. If she was fussy it always comforted her to be warm and snuggled up. To tell the truth, I can’t think of many times that she wasn’t being held by someone, and she made it quite clear that that was her preferred state of things.
Maggie continued to grow and thrive against the odds. There were some difficult times, like when we had a big hospitalization where an out-of-control urinary tract infection left her weak and needing serious medical care.
The almost-hourly blood draws left her low on blood and needing a transfusion. It was stressful and a very touch-and-go time, but the hospital staff were always hopeful and encouraging and helped keep all our spirits up.
But Maggie was a fighter and pulled through to be her bright, sparkling self in no time.
As Maggie grew to more than 10 lbs, we were told she would be big enough to tolerate surgery to close her Patent Ductus Arteriosis. The hospital surgeons ended up deciding that it wasn’t moral to subject her to the suffering of a surgery and its recovery, if her quality of life wasn’t ever going to be that high (because, vegetable). As a result, her heart struggled to get enough oxygen so we ended up with an oxygen concentrator giving her blowby oxygen to help keep her comfortable.
Maggie got bigger and spent more time awake and engaging with her family and her environment. We had a bassinet beside our bed and we stopped putting her in the crib in her own room. We were just too attuned to her breathing and sounds to be comfortable not hearing them. Our cat Turbo would sleep on the shelf below Maggie, and was shockingly never attempting to get into the bassinet with her. He seemed to guard her when she was sleeping.
After a hospitalization her health situation became more dire. Without surgery to fix heart issues and her continuing to grow thus making the heart issues worse, her systems were all becoming strained. Urinary tract infections, antibiotics to treat them, and greater nutritional needs were taxing her more and more.
Kermit was one of Maggie’s favorite things to look at. She would study him carefully.
In the end, Maggie had a severe bleed in her stomach (ulcer), that led to her quickly deteriorating and passing away on December 6. My parents were down that weekend to help out, my father was raking the yard, my mother was cooking, and none of us were ever going to be ready for the moment. I remember being inconsolable when she died, and we held her for a long time until our friend M, a funeral director, took her from us. Or maybe we took her there. I remember both things happening.
25 years later, I remember all the good memories and don’t visit the bad ones enough for those memories to be vivid. After 25 years now, I have to say grief doesn’t get better, and my heart always goes out to all parents that have to grieve for their children. For me, I embrace it, I remember the anniversaries and birthdays, I wrap myself in a blanket of happy memories and in doing so, I move to a place of thankfulness where I celebrate their memory always.
Now I just feel incredibly lucky to have shared a life with Maggie Rose, she was an exceptional person and I learned more valuable life lessons from her than anyone might have expected. Especially, after Maggie I disabused myself of the notion of having expections of who my children will be, what they will do. I have faith in them that they will find themselves, and I will be the support beneath their feet and the encouragement they need to be whoever they want to be. Make all choices with LOVE and persevere.