“LIFE ISN’T NECESSARILY SUPPOSED TO BE A CAKEWALK.”
~ TRACY HAFEN
I was always the kind of kid who had to excel and be the best at everything. I had to break the school record on every fitness test; I had to get straight As every year; I was valedictorian of my high school class. My mom said I was always like this from the time I was tiny, so I think I was just largely born with this perfectionist type A personality. I also believe myself to be a fairly capable person. I think when you have that combination, you do end up largely creating a very good life for yourself that you feel quite in control of. Growing up, I felt a direct cause and effect between what I chose to do and the outcome. I could get the outcomes I wanted by doing what was necessary to get that outcome—for example, studying hard to become valedictorian. That’s just the way life works, I assumed.
I was married in my early twenties and living in Chicago with my husband and eighteen-month-old son and was pregnant with our second child. My husband and I were resident heads on the University of Chicago campus while he was getting his Ph.D. In the middle of the night, when I was nineteen weeks pregnant, I felt a sudden a gush of fluid come out of me. The bed was soaking wet. My water had obviously broken and I knew it probably wasn’t good, but I just didn’t know how serious it was. We went to the emergency room, and the doctors didn’t believe my water had broken.
I insisted it wasn’t just my bladder, so they finally did an ultra- sound to check fluid levels. The fluid levels were on the low side of normal, so there was still some fluid present. They sent me home and told me to stay down and not get up for anything. I called my parents, and they flew out, picked up our baby son, and took him back to Utah with them so that I didn’t have to do anything but stay still. They said there was nothing they could do in terms of helping me until I got to twenty-four weeks, when a fetus is technically viable.
I sat for the next five weeks. I literally sat up on the couch for five weeks straight, night and day. I never lay down. I never did anything. I used a bedpan. Every time I lay down, the amniotic fluid would start gushing out, but as long as I stayed sitting up, it leaked out a lot slower. By the end of those five weeks, I had horrible open sores from just having the pressure always in the same place.
My doctor had me come in once a week to do an ultrasound, and they saw the fluid levels go down, down, down to where there was no fluid. When I hit twenty-four weeks, I was hospitalized for the next four weeks, and literally my feet never touched the floor, and again, I stayed as still as I could. I did everything in my power at the time to keep this baby. The whole time that I was lying there, the doctors thought that we had a 5 percent chance that our baby would be born and be fine.
Ultrasounds work by bouncing off fluid. By this point, since the baby wasn’t in any fluid, they couldn’t get much of a read on the baby, including the gender, even though I was having ultrasounds every week.
The doctor prepared us for what would most likely happen when I went into labor or when they decided to induce. The baby would probably live for a minute or two and die because it wouldn’t be able to breathe. The baby would not have lungs that could expand and contract. The alveoli, the air sacs in the lungs, develop from the baby breathing in amniotic fluid. The baby breathes this fluid in and out throughout the pregnancy. If the baby has no fluid to take in and out, the air sacs never become pliable and able to expand and contract. So that’s what I was mentally prepared for, although I certainly hoped for a miracle.
They decided to induce labor at twenty-eight weeks. They took me down to labor and delivery, and it was right off the ICU, because they knew this baby was going to go right into the neonatal intensive care unit. We were pretty much all expecting the worst, hoping for the best.
When she was born, the doctor just started crying, and then she said, “It’s a girl.” And our little baby girl was just screaming her head off! She was crying and yelling like any healthy baby. It was very clear that she could breathe just fine and had great lungs, her color was great, her reflexes were good, she was a good weight, everything about her was just robust and healthy. And so, of course, it was a very emotional experience for everybody because no one had known what to expect. They even kept her off a ventilator for a few hours because she was breathing normally. She was fine. Everything just looked great. Basically I had done everything in my power to keep my baby and it had worked and I had my miracle.
She had to stay in ICU for a while, though, as all premature babies do, so we were there pretty much day and night. When she was eleven days old, I wrote in my journal, “Something is different with Chaya. Something’s wrong. And I don’t know what it is. But something has changed.” Something had changed.
Soon thereafter, our doctor told us that she had periventricular leukomalacia (PVL) and probably would have cerebral palsy. It meant that she may never walk. It was a 50 percent chance that she might be close to normal and just walk with a limp, but you can’t tell with babies and you just have to wait and see how the baby develops.
Chaya never rolled over. She couldn’t sit up. She couldn’t drink well without choking. She couldn’t grasp toys. So we knew from fairly early on that she was not developing in any way normally.
She never hit any of the milestones you look for in child development. She’s never been able to take a step, she’s never talked, she only was able to eat on her own for a few years and was developing aspiration pneumonia, so she had to be put on a feeding tube when she was six. Basically none of her muscles work. She has the understanding now at fourteen of about a four-year-old. Her case of cerebral palsy is extremely severe. She is one of the most incredible people I know and one of the greatest joys in all of our family members’ lives, but she is definitely severely handicapped.
When she was somewhere between ten months old and a year, we were watching a videotape of our family. I had not even remembered my husband filming me while I was in a wheelchair outside the hospital the day after Chaya was born.
My hair is blowing in the wind, and I look so happy. And he said, “So, what do you think?” And I said to the camera, “She’s just perfect. She’s perfect.”
And that’s all—that’s all I said. I was smiling, saying she’s perfect.
It was that moment for me. I just remember staring at the screen with this sinking, amazed feeling. I was so clueless. It wasn’t that I was smug, because I wasn’t. I did seem grateful. But I definitely had this air of inevitability. As if I was saying, “Of course she is. I did everything I could and it worked, just like it’s supposed to. She’s perfect. We beat the odds. We got our miracle and that’s how it works.”
Knowing what was to come, it was shocking to see me the day after she was born saying those words. The reality was, I didn’t do it. I didn’t save her. I didn’t. She’s not perfect. Now, I think she’s the most perfect person I know, but in terms of her physical condition she’s very far from it. The whole time I fought to save my baby, even though I was preparing for the worst, I think the whole time I honestly did expect things would work out like I wanted them to because I was doing everything I could and was willing it to happen.
We don’t know to this day why she is the way she is. We found out in going back through the records that on day eleven during the nursing shift change she had pulled out her ventilator tube, and in the records it said she was found dusky and desaturated, meaning bluish. Two weeks later her brain ultrasounds show this problem. It could be that there was a hostile uterine environment that they could never detect. There are things called cytokines, which can cause brain damage in utero that may not show up for a while. So we don’t know. It doesn’t matter. It is what it is.
It didn’t hit me that I had this belief or notion or air of inevitability until I saw that video. I was so naive. I realized in that moment that life is not easy, nor is it fair, and I believe it’s not necessarily meant to be. Now I don’t expect life to be easy. I don’t expect it to be fair. I don’t expect things to go the way I want them to just because I do everything right anymore. I hope they will. I still do everything in my power to create my own circumstances and the outcomes that I want. I always have to try to create a good life for myself and for my kids and for the people around me. But I don’t expect that it’s always going to work. And I don’t think it’s supposed to. I don’t think life is necessarily supposed to be a cakewalk. I don’t think it’s supposed to be fair from the outside—from what we as human mortal beings view as fair.
It does change a life when you come at things from that perspective. It changed mine. Seeing that and realizing it and also then just dealing with and growing with a handicapped child has greatly changed me and my outlook and approach to life.
I see things differently than I used to. Things that would have been big deals to me before just really aren’t anymore. I have eight children now, and I am not a parent who tries to overly protect or control my children. I am very much into letting them fail. I do not put the same kinds of pressures on my kids to be like I was, and I think if it were not for this epiphany, I would have expected or tried to demand them to be. I appreciate more other people’s way of doing things and what they bring to a situation.
I’m still somewhat of a perfectionist, and I’m far from perfect, but I truly do believe myself to be one of the happiest people that I know, in terms of just finding joy in life and even in finding very difficult and hard things rewarding. I believe it’s because I know that, while I can control much of what happens in my life, there are plenty of things that remain outside of my control and ultimately all I can do in any given situation is act to the best of my ability. ~ Tracy Hafen, Epiphany
To Read More About Tracy and the Behind-the-Scenes of our Interview, Click HERE.