It is difficult to imagine how you will react when one of life’s worst nightmares happens. I might be weird, but in my youth, I would look at others in difficult situations and try to imagine how I would be. At best, I hoped I would do whatever was needed, but truthfully, I hoped I never had to find out.
I was 30 when it happened. After trying for 7 years to get pregnant, having lost one tube in the process, I finally gave birth to a son. Eli was born prematurely with a heart defect. When I brought him home 3 months after his birth, at 5 pounds, there were no how-to books on mothering a preemie who had to be fed through a port to his stomach, who wore a band around his chest covering wires hooked up to a monitor 24/7. I had to wing it. I was living the Air Force life with my spouse and was in Omaha, Nebraska far from my home and parents in Florida. We didn’t know anyone. I had been on bed rest for the pregnancy. It was 1989 and the internet wasn’t the internet yet. From the start, I was in a difficult situation.
Eli had to have 14 hospitalizations, 4 heart catheterizations, and 5 surgeries during his 14 and a half months of life. He was beautiful with dark hair, dark eyes, and laughed easily in spite of all he endured. When we took him to Boston for the big heart operation, he was saying several words, standing with help, and was a happy boy. Sadly, complications followed the successful open-heart surgery and he died 3 weeks later, with tubes and wires everywhere and his little body on a bed, instead of in my arms. Yes, I wanted to die with him. It was and still is, the hardest thing I have survived. I say that, though currently, my 27-year-old son, who I adopted after Eli died, lives with my husband and me. As a young teen, he was diagnosed with a neuromuscular disease and has a myriad of symptoms and his diagnosis is degenerative…but that is a story for a different time.
Grief was and is the most difficult burden I have ever experienced. I am convinced losing Eli changed me on a cellular level. I remember thinking the first year will be the hardest. Nope. Not even close. Year five was brutal. I don’t know why, perhaps it was because between year one and year five several things happened.
The first year was horrible as you can imagine but I got through the unrelenting sorrow and pain. At the end of year two, we adopted a two-year-old boy and newborn baby girl and that was wonderful. I gave my best to loving them and not to grieving. At the end of year three, I thought I was doing fairly well, but my father, aged 62, was diagnosed with kidney cancer and died 5 months later. His death was devastating. Watching my mother find her way and the abyss he left in both of us was difficult on a level I didn’t know existed. Even so, I really thought I was going to get through it all. Unfortunately, the misery, though I tried with much determination to give it plenty of room to breathe and flow out of me, had in fact, taken up residence in my soul. I believe it moved in, subtly, one heartbreak at a time.
Then year four happened. I discovered I was pregnant and I thought my heart was going to be healed through the process of having a baby, like being given a chance to reset. I was filled with hope. I was given medication and put on bed rest immediately. However, a couple of weeks later, I awoke in pain. The doctor said to come in right away. It was ectopic, again. I had emergency surgery and that ended the possibility of ever having a baby. It was all too much. It just was.
Through the years, I had made great efforts to heal. I started a grief support group and did that for two years. I restarted my family adopting my son and daughter. I finished a master’s degree. I made a friend who still is a friend—and that is saying something given my disposition at the time. I designed a medical practice and helped run my spouse’s office. I saw a therapist. Actually, I saw two. Neither seemed to get it. I was getting pissed, deeply, widely, extensively pissed. I needed someone to tell me what I had done to have life turn on me; only I didn’t really know the question exactly, much less the answer. So yeah, the fifth year after Eli died, the misery was palatable and it was the most difficult.
I plummeted into the dark night of my soul and tried to hydrate it with alcohol. It took months to figure out nothing on earth was going to fix me. Ever. There were NEVER going to be good enough answers. Although I functioned as a wife and mother and looked fairly normal on the outside, on the inside, I was pretty much screaming a good deal of the time.
Grief lasted as long as it lasted until somehow, in the day-to-day living and being called Mom a million times, my soul slowly resigned to the way life keeps on keeping on. I unfurled eventually, bit by bit, and I think my misery got tired. The anger took too much energy and somehow my body and mind stopped or let go. I am not sure which but I believe I found salvation in loving my children and living daily with their ability to love purely and with joy. I had lots of talks to God after I decided to talk to Him again. I began to give myself permission to feel good when good presented itself. I intentionally slowed down, started appreciating the smallest of things like clean sheets, a well-made dinner, my children laughing, coffee in the afternoon, or laughing with a friend.
I discovered if you suffer a great loss, when you are around someone else with a great loss, yours will come to the surface. Every funeral is a reminder. You have to fortify yourself by knowing that. I learned it is fine to be angry, sad, and grieving and find yourself laughing over something ridiculous. Over time, I became less concerned about presentation and more about the process. I stopped complaining about stupid things I cannot control and looked for things to appreciate. I took nothing for granted, intentionally made conversations better, and worked on being a better listener. Friends mattered and I cared deeply for them. I determined they will always know how I feel about them.
So life is going to keep on keeping on and grief is sure to come again, but I know that hugs keep my heart tender and laughter is my favorite thing; well, and really good hot coffee of course.
ElizaBeth is a full-time caregiver and a part-time consultant to parents of a child with special needs, who enjoys spending time with her husband, family, and friends. She has a Master’s in Counseling and Ph.D. in Human Services and is writing/ researching on the subject of chronic pain.