In 1997, after suffering from two miscarriages, I found out I was pregnant. It was a complicated time in my life to be honest but the realization that I was lucky enough to have my own little miracle growing inside of me was amazing. I made sure every single day that I did everything possible to make sure I would not have to yet again say goodbye. On March 24, 1998 I gave birth to my “little man”. Devyn was perfection. He had a head full of dark silky hair and beautiful skin that was like satin. He was beautiful. We spent our first hours together and I just held him and when the nurses offered to give me a break and rest and take him to the nursery I refused. I didn’t want to let him go. I began to feel ill while spending our few days at the hospital. They treated me for the high fever I began to run but told me it was all normal after childbirth. We went home after our few days and I questioned whether I was up to it because I felt so sick but I figured the nurses and doctors wouldn’t have sent me home if it were that bad.
Once home, we settled in together. I didn’t have much strength to move around much so I just rested and had him sleep on me. It’s crazy how although I didn’t know that our days were numbered together I acted as if they were. I couldn’t put him down. I couldn’t be without him. I luckily started to feel better. On our ninth day together I was nursing him and noticed that when he was done he had a mouthful and milk and wouldn’t swallow– it was mother’s instinct. I immediately got into the pediatrician and the doctor said he was slightly dehydrated and that we should go to the hospital to get an IV with fluids and see what was going on. The minute we got to the hospital and they began what should have been a simple procedure of starting an IV was the beginning of the end. They told me that he needed to be airlifted to the nearby children’s hospital. Once there they told me that they were trying to save him but that he was in major organ failure. That night was pure hell and I witnessed his body give up. The nightmare wasn’t stopping. He had seizures and then the machines began to scream as he flat lined numerous times. The next day as I walked back into the room through the cold steel doors I remember seeing his doctor standing at the sink washing her hands and I still can’t hear her words in my ears but I heard her tell me to go to him. Everything had changed when I turned the corner. He was laying there still hooked up to the machines but things were quiet and nobody was rushing around. There was a rocking chair at the foot of his bed that wasn’t there before. They asked me to sit down and then once again the words came that I couldn’t hear out loud but instead deep crushing words felt inside. I watched as they unhooked one last tube and then he was in my arms finally. I hadn’t held him since the day before. I had held him for nine straight days. He was still so perfect. I was then saying goodbye. I don’t know how long we were in that rocking chair together but I remember being put into a wheelchair with him and they took me to a private room. In that room I held him until for as long as I could. They came later and took him away. I had to leave that hospital without my life….without my heart.
Fast forward to when I started to breathe a little again. I met my best friend and we married a year later. He is my rock. I was so happy to begin a new chapter in my life and we knew immediately that we wanted a family. We began to have miscarriages. They were devastating and I felt defeated but strangely what I realized was that there was a numbness to it all. We were then in the hands of a fertility specialist. A few failed cycles passed but then came the news and it was TWINS!!! I’m breathing again. This is all worth it, I thought…..until the brakes were hit again at 17 weeks. I was in labor and the numbness came back. They managed to stop the labor and after a few days sent me home to spend the rest of my pregnancy in bed. I made it to 35 weeks and 2 days and in December 2002 we welcomed Kyle and Kailyn. They spent the first couple of weeks in the NICU for preemie related issues and although it was nerve wracking to be back in a place that I left without my child once I guess my mind knew they were coming home. Their first couple of years in regards to health were rocky at best. We spent many nights at the hospital with bouts of pneumonia with Kyle and Kailyn’s seizures. They were described to us as febrile seizures but they were complex instead of simple seizures and they were scary. Right before Christmas one year Kyle had just been released from the hospital after spending a few days there with pneumonia. We got him home and settled and got both he and Kailyn down for a nap. I ran to the grocery store and no sooner did I walk in the door Duane was calling me to tell me that Kailyn was seizing and that it was bad. He already had called 911. When I got there they were already working on her. This one was different though. It wasn’t stopping. They let Duane ride with her in the ambulance while I left Kyle with a neighbor. When I walked into the hospital it was the horrific nightmare that I once had replaying in my head again. There was panic running down the hallway towards me. It was the doctors, nurses and my husband and my baby girl. She was breathing through a bag that they were pumping and when I saw Duane’s face I hit the floor. The next thing I remember was that they had finally stopped the seizure after 55 minutes and she was now on life support. We spent the next couple of days in that same place I silently begged not to go back to. The place where I had already been before too many times. Her neurologist had conversations with us about if and when she comes off life support what we may possibly be faced with. Everything we knew about this sweet little baby girl who had just learned how to finally walk in her adorable white leather Mary Janes and all the times we got to hear her say “Daddy” and “Mommy” might be all gone. When they weaned her off the oxygen support and gradually brought her back we saw the same little girl with the water sprout of hair wearily pull herself up in the crib. She had a fire inside of her though and crushed the odds. In no time she was back to everything we nearly lost and once again I could breathe.
In 2006, we decided to add to our family. We were surprised when we found out we were pregnant so quickly after all of our previous struggles. We were shocked when we found out it was twins again! I held my breath most of the pregnancy. I was so afraid of all that I knew could go wrong but the pregnancy sailed by without many problems. We made it to 36 weeks and 3 days and in July 2007, Colin and Connor joined our family. Everything from the beginning was so easy. They were in my hospital room before I was…no NICU…not being whisked away. Duane and I joked to each other how easy these babies were in every way. Clearly my guard was down. And then it all changed. Par for the course, it was a Friday and Colin had a cold that seemed to be quickly headed to his chest. Knowing my kids track record, I knew he would have pneumonia by the next day and of course it was a Friday and the doctor was closing soon. I had my best friend and neighbor’s husband who was a firefighter and EMT come over to listen to Colin’s lungs. He said all clear. A little time passed and my instinct was screaming at me. I got into my pediatrician and although he also said his lungs were clear something didn’t seem quite right. He sent us for a chest X-ray to rule out possible pneumonia. We got that taken care of and home we went. That evening when my pediatrician called us and I was assuming he would be telling us that we needed to go pick up a prescription because it was actually pneumonia I knew the minute I heard his voice that something far more serious was going on. He hesitated to tell me anything other than to ask where Colin was and that we needed to get him packed up and to head down to Scottish Rite and that a doctor was waiting for us. I demanded he tell me what this was all about and I heard the words “mass” and “head of oncology”. The minute we walked into the hospital the tests began. In the middle of that night as Colin slept on my chest and Duane sat next to me the doctor came in and said that things were not hopeful and that because of what it was and where the mass was he probably wouldn’t survive.
I knew in that moment that I wouldn’t survive having to hold a child in my arms again that had stopped breathing and that I would have to say goodbye to. After more tests they told us he had Neuroblastoma. The next couple of days were spent figuring out what to do. We brought him home to wait for him to get over the cold he had because they couldn’t operate on a sick baby. It gave them more time to also run tests specifically for Neuroblastoma to see if the cancer had spread. Things actually started to look hopeful and that it even might be completely benign. It’s the only cancer that can actually transform itself from benign to malignant and vice versa. The surgeon was hopeful that is was completely benign. Surgery day came and we waited for the news. It wasn’t benign which would’ve been the best news but we were told they got all of it and the surgery went well. Colin spent the next two years going through a battery of tests and in the end he was diagnosed as cancer free with a 90% survival rate. We have watched him learn to ride a bike, have his first day of school and so on. He continues to amaze us with everything he does.
It’s all very surreal what we’ve witnessed in the last sixteen years. The memories and flashbacks have always played through my mind like a movie real. I can still hear noises and voices but it all seems like someone else’s sad and tragic story that I’m remembering. I’ve kept it all in a place inside of me not quite letting it completely sink in for fear of completely falling apart. I absolutely have had to keep putting one foot in front of the other and making sure to force myself to take a breath each day.
So this is my story. I have never figured out quite how to comprehend it all really. The vision of this park is emotional and amazing all at once. I never found a way to memorialize Devyn. Everything that I tried to come up with didn’t feel good enough and felt forced. I have always felt that if I gave my permission to take it all in I would be closing those chapters of my life. The possibility of this place existing where I can reflect on Devyn and to celebrate Kyle, Kailyn, Colin and Connor will possibly be a sense of peace that I thought would never find.