I’m going to share something with you, my dear readers, that I don’t normally share. Obviously, those close to me know, but generally, I haven’t spoken about this publicly. The reason I’m doing so today is because many times, when you experience an indescribable tragedy, you feel alone. So alone!
Logically you know you aren’t the only one. Your rational mind tells you there are others, but your heart isolates you inside this cocoon of tragedy, agony, and loss. So you internalize and try to forget…
… Until you run across something so heartwrenching, so unreal through which one of your friends has suffered, that your own pain pales in comparison.
It happened yesterday, when my friend Chris posted something that made my breath catch. He graciously wrote this post that explores his unspeakable agony for me to publish, because I asked him to. Maybe I’m posting this as catharsis. Maybe it’s catharsis for both me and him.
In 2002, my daughter Jordan Nickole died at 32 weeks of gestation. It was a difficult pregnancy. We did amniocentesis because the OB found a large cyst or bubble that covered the entire back of her neck in an ultrasound, which denotes Turner Syndrome and can cause a panoply of medical and developmental problems, including short height, failure to start puberty, infertility, heart defects, certain learning disabilities and social adjustment problems. It means that the X chromosome is either completely or partially missing.
I was told I had the option of aborting if the test came back abnormal. We thought long and hard about it, but decided not to. The amnio came back negative, and as relieved as we were (I remember getting the call at work and getting dizzy and falling down on the floor weak with relief), the doctor watched me and Jordan closely from then on.
At 32 weeks, she couldn’t find a heartbeat. She tried several times, stayed late until after 1900 hrs., and finally sent me to the hospital.
Long story short, I was forced to give birth to a stillborn. I refused all night. I told them I wasn’t ready. I couldn’t do it. But in the end I had to.
For years, I pushed Jordan’s death to the back of my mind. And then Chris wrote this. Maybe it sounds monstrous, but I feel a little less alone.
I hope Chris does too.
This is a hard post to write. I’m not even sure of the reasons for writing it. I’ve had 14 years to process. Maybe I want to help someone else with my struggle. Maybe I want to just get it out. Maybe I just want someone to relate. I don’t know.
Interpret as you will. I’m not sure I care.
Usually when a person starts talking about regret, it’s in reference to some boneheaded mistake they’ve made in their lifetime, or the trip to Disney World they didn’t take.
For me, it was about looking for a piece of machinery.
Jessica Elise was born January 17th, 1994. Most people who take the time, either remember it as the California Earthquake or Ice-Storm#1 (There would be another icestorm in a few weeks that made this one look like a piker) Babs Streisand’s house got damaged. I remember that one acutely because I sincerely dislike Babs. Love her singing voice… don’t like her.
We knew things weren’t going to be “normal” with this one. Our son, bless his soul, had been a rough delivery and Jessica had been rough pregnancy. We’d seen doctors, and more doctors, and genetic experts and more tests and all we got were more questions.
We got answers that afternoon. The best answer is that we had a beautiful baby girl. Jessica Elise (“I will see the promise of God” loosely translated. I actually didn’t know that when we picked the name, but it actually makes a little sense now.) The not so good answer was that she was going to be a challenge, medically.
Jess was going to be a both a blessing and challenge. Micropthalmia meant she was never going to be able to see without some sort of “eyeball transplant” or Star Trek level technology. Esophageal Atresia meant surgery to connect stomach and esophagus so she could at least keep from drowning in her own saliva. So… challenges.
For eight and a half years, my wife, my son, our extended family and friends and I, and the people we came to know because of Jess faced the challenge of raising and helping that little girl live. That little girl who one OB/GYN told us would be a “monster,” and we ought to consider aborting her. The little girl who we were assured would never laugh, never talk, never walk, never love us back, and so we ought to allow “nature” to run its course and let her choke on her own spit and snot…which “might not be a bad thing.”
Sixty plus surgeries. Countless days and hours spent in hospital rooms and hallways. Hours hoping and praying for another breath on her own. Watching a pediatric nephrologist jumping for joy because she peed on her own because that meant her kidneys hadn’t failed.
Challenges and blessings.
Eight and a half years. How in the world do you try and recount all the amazing things you learn taking care of a baby like that? How do you recount all of the times when medical science was either flat out wrong in its predictions or flummoxed by a little girl with a snaggletoothed grin? (She lost two of her teeth during a surgery when the OR tech accidentally knocked them out during intubation.) How do you talk about the tears that roll down your face when your daughter, grabs your hand and desperately, frantically wants you to tell her that she’s “pretty girl” (using tactile sign) because her face was massively bruised from having eye socket expanders placed that day, and she had apparently heard her parents talking about how bad she looked (remember she wasn’t even going to be able to know we loved her)?
Having that little girl was the biggest challenge and one of the three greatest blessings I’ve ever known. My son and my wife are the other two.
Eight and a half years. That level of care will take it out of you. Even with help, it will drain you and exhaust you, mind, body and spirit. It drained all of us. We were happy to do it, glad to do it. You don’t do any less for someone you love, but there comes a time where there is nothing left to give.
There also comes a time where the body just will not work anymore. For most of us, that doesn’t happen until we reach a good ole age. But not for Jessica. For months, she had been having problems digesting food, getting weaker, getting sick easier. Looking back it’s easy to see the problems, but inside the storm it’s harder to make out, you just brace and wait for the next blast.
We’d all had it. We’d taken so many hits. We were tired. And when you’ve gotten that tired, you rely on, depend on, some sort of routine to maintain your sanity in an insane situation. That routine, almost a complacency, is dangerous. They say the most dangerous place to drive is right near your home. The reason is that you relax from the routine… you’ve driven this stretch so many times, you could do it in your sleep… right? Up until the deer jumps out from nowhere.
I was out of work but starting school for my degree. I was homeschooling Christopher and taking him with me on school days (we lived right down the street from the Christian College I was attending, and a classmate’s wife was more than happy to kind of ride herd on him with her own kids until I got out of class). Christine was working on the other side of Baltimore and thus had the only real working vehicle capable of hauling all of us. She hadn’t wanted to go, things weren’t “right,” but I made her go, so that she’d have some sort of “normal.”
The weekend had been abysmal. Jess was getting sick and was miserable. We almost couldn’t console her; we’d go into her room, quiet her down, put on her favorite music album and make sure everything was OK; then back out into the living room. Then an hour later do it again. And again. Lather, rinse, repeat.
She had gotten skeletally thin, like a prisoner of war or a famine victim. There was no muscle tone anymore. The peritoneal feeding went through her, literally. It was almost undigested.
She was breathing heavyly that day. She was probably getting an infection, I thought, as I changed her and her bedding that morning. I’ll keep an eye on her and maybe start getting things ready for a trip to the hospital.
By afternoon, I’d already contacted Christine and let her know that we were definitely gonna be doing an all-nighter at the hospital. “But don’t worry,” I said. “Don’t kill yourself getting home.”
“What are her SATs doing?” my wife asked.
“Not sure; I’ll dig the Pulse Oximeter out and run a check. (For those who don’t know, it’s that thing in the hospital you wear on your finger or two with the red light. It measures the amount of oxygen in the blood.) At least that way, we’ll have number to throw at the ER docs.”
Christopher was watching Buffy on TV as I started looking for Jess’s Pulse Ox. I had made sure the O2 cannula was in her nose earlier and had been running O2 during the day to see if her breathing would calm down. No dice.
Also, no Pulse OX. We had recently moved and were living out of boxes, but I could have sworn we’d used that Pulse OX since we moved in. I looked everywhere for that thing. I tore closets apart. I tore boxes apart. I re-tore boxes apart.
I looked in on Jess. She was breathing more labored now. She was nearly thrashing, she was in so much pain, from exactly what I don’t know, but it was breaking my heart to watch.
I had to take a break. I sat down and watched TV with Christopher for a little bit, trying to rack my brain where the machine was. I called her nurse that cared for her on weekends. Nope. Didn’t know. Hadn’t needed to use it.
I went back around the house, now frantically trying to find a piece of equipment that did not want to be found.
Christine called and had left work. Traffic around Baltimore being what it was, it was going to be an hour or more before she got home. I had to find that machine before she got home. I had to get the baby ready to go.
I went in and started stripping her down to give her a cleanup and new change of clothes. There was something really wrong. She was gasping for breath, even with O2. I had to find that damn machine.
I don’t know exactly how many minutes later it was. It couldn’t have been very long. Ten? Fifteen? I gave up on looking for the bloody thing and was just going to get her packed up.
The first thing I noticed is that she’d messed her bed. Well, that was “normal” for the day. I think I’d changed her bed at least four or five times. I also noticed that she was quiet. I went over to the crib and realized that she also wasn’t breathing. She was a very odd pale shade of… when they say blue, it’s not. It’s a weird pale.
Some people get hysterical when crap really goes wrong. I get very calm. It’s weird in its own way, I suppose. You can tell just how far it’s dropped in the pot, by how calm I am. I get bent out of shape by some of the most mundane things, but…
I told Christopher to call 911 and tell them to send an ambulance. I started doing CPR and begging her to cry or move or do something.
The EMTs didn’t take long to get there. I told them what the situation was, and they set to work. The police arrived at the same time… of course they did. I’ve been around enough LEOs and EMTs over the years to know the drill.
I calmly told them the event of the last however long it was and the name of Jessica’s doctor at Johns Hopkins where she was a patient.
I knew I was going to jail. The house was a wreck. I mean seriously a wreck. The baby’s room was a mess. She was nearly naked, covered in crap, pill bottles, medical supplies, boxes, clothes, everything was strewn everywhere during my search for the O2 monitor.
I was calm. Too calm. I was going to jail.
Didn’t really care.
No punishment could ever come close to what I was feeling. What I AM feeling even today.
My little girl died, and I wasn’t there.
I’ve said that before, and people invariably explain it away. But the bottom line is I WASN’T THERE. I will go to my grave and I will not ever feel good about that.
We spent eight and a half years preparing for the day she left us. Knowing it as a fact of life every day for eight and half years. And when the time came, was she surrounded by people who love her? Was her daddy there holding her hand and giving her to the angels. NO. She died alone in puddle of crap fighting for her next breath. How do you tell yourself that’s OK?
Intellectually, even in my faith I know that it worked out as it needed to. I want to believe, I DO believe that in her final moments God was with her. But it really doesn’t make a difference. Even if God WAS there, I wasn’t, and that’s what I regret. I probably always will.
You can say what you want. At this point I really don’t care.
I don’t know. I don’t know why I’m writing this, intending for someone to read. Some will probably say I’m looking for attention… maybe I am. Maybe I need someone to tell me one more time that it’s OK. Maybe I’ll believe it this time. Maybe I just want someone else to know that if they’ve gone through this, they’re not alone. A new set of friends lost their baby to miscarriage yesterday. I can’t say I know how they feel, but I know grief and regret, and the endless what-if’s.
I don’t know. Take from this what you will. Do with it what you will. I don’t give pat answers anymore. All I have is a hope. That I’ll see her again someday.
I miss my girl.
One more year, Jess. Miss you, pretty girl. Hopefully, I’ll be there sooner or later.
P.S. I found the Pulse Ox the day after the funeral when we returned to the house. It was sitting right on top of a box that I had torn apart several times looking for it.