It was a cold, clear day in February, the sun was shining through the windows of our playroom and my daughters, Avery and Lily were busy investigating a new toy, pushing every button and making every song sing over and over and over again. Unfortunately, their sister Zoe was not feeling her best. She had not kept anything down for over 24 hours and her fever was running 102.3 with a faster than normal heart rate, even when sleeping. After our second trip to the pediatrician we were sent to the Children’s Hospital for a chest x-ray and echo. Zoe was 13 ½ months and had been home from the NICU just shy of 4 months. She was on oxygen, had hearing aids, and a g-tube so her fragility was always at the forefront of my mind as well as that of our pediatrician.
Our daytime nurse went with me to the ER where we were quickly greeted by a triage nurse who led us into a private room, away from the general ER waiting room. The doctor soon came in, smiled softly at me, gave a playful wink to Zoe and listened attentively as I shared my concerns and a bit of Zoe’s history. As he was writing his notes he looked up and said “I’m going to prescribe Tamiflu as a precaution. She may just have a bad cold or some kind of virus, but with her history I’d rather err on the side of caution.”
We were discharged not long after the consultation and on our way back home where Zoe spent a few more fatigued days. Before long she was back to her smiling self, making the cute little raspy noises her scarred vocal chords would allow her to make and playing “steal the paci” with her sisters.
In my daydream, that’s how February 6, 2008 would have played out. Instead that attentive doctor was actually a cold, young resident who looked Zoe over quickly and gruffly said “Why are you even here? Her heart rate is up due to fever so I can’t even justify the echo. She has a cold, give her Tylenol.” I was in such shock that he did not share the concern of our pediatrician that my trembling voice trailed meekly after him as he left the room. Two days later Zoe was admitted to the hospital. Eight days later she was dead after developing full-blown pneumonia, Influenza A, Influenza B, and ultimately a MRSA infection in her blood.
IF ONLY…I had known about the rapid flu test…THEN MAYBE it would have shown positive and a different course of treatment would have been prescribed.
IF ONLY…I had demanded the doctor do the flu test and prescribe Tamiflu…THEN MAYBE she wouldn’t have gotten so sick that she had to be admitted.
IF ONLY…I had exhibited more courage and not accepted “She has a cold, give her Tylenol.”
IF ONLY…I had listened to my gut that something was really wrong with her and not let that doctor leave the room until I was satisfied with a course of treatment.
IF ONLY…I wasn’t so worried that if I challenged a doctor they would not give my daughter the very best treatment she deserved.
IF ONLY…I had demanded the IV team insert Zoe’s IV the day she was admitted instead of allowing the nurses to use her as a pin cushion, pricking her delicate skin eight times before finally finding a vein…THEN MAYBE MRSA wouldn’t have had an entry point into her blood stream and ravaged her organs in a matter of hours.
THEN MAYBE… Zoe would be sitting in her first grade classroom today along with her surviving triplet sisters, Lily and Avery.
THEN MAYBE…we would have three sets of everything, instead of two. And, I wouldn’t’t have to watch movies of my sweet baby girl to remember the sound of her raspy noises or try to glean from those images the sensation of stroking her soft, silky black hair.
‘If Only” and her best friends “Could Have” and “Should Have” taunted me for more than a few years after our daughter passed away. The guilt, as I have described it before, was like a boulder sitting on my chest that I did not feel I had the right to try to remove. Those If Onlys did not stop with that first ER visit. Oh no, they went on and on, back in time, throughout the 14 months that Zoe was alive. On the day my girls were born at 25 weeks 5 days I cried in my hospital bed “If Only I had not sought fertility treatments, then I would not have had triplets and they would not be fighting for their lives.”
I could slice and dice every difficult moment Zoe faced in her short life and find something I did or did not do that, in my grief-stricken mind, could have saved her life. The “rotisserie thinking”, as my grief counselor called it, was quite content to be my best friend and live inside my head. I used it to punish myself for not being the mother that Zoe needed or that she deserved. The movie reel played over and over without stopping, I did not have to rewind the tape in my head, because it never ended.
It has been over six years since Zoe died, and after many months of grief counseling and treatment for depression, anxiety, and Post Traumatic Stress Disorder, I have finally found a gentle peace inside about her death. There were several moments along the way, words of wisdom from various people that I recall. I think of them as seeds planted inside of me that would eventually snap the entanglement of guilt around my heart, eventually blooming into acceptance and even joy.
I’d like to share these seeds with you in hope that they too may be planted in your heart as you struggle with the If Onlys, the Could Haves, and the Should Haves.
From my first Christian grief counselor: “We do not have perfect knowledge. Only God has perfect knowledge. You made all the right choices and decisions with the knowledge you had at the time.” She was right, I didn’t know about the flu test or even Tamiflu six years ago. I knew Zoe was sick, so I took her to the doctor, as any parent would do. The second thing she said to me was, “You can allow this experience to make you bitter, or you can allow it to make you better.” Bitter is the easy, it doesn’t take much work because guilt and grief and depression feed off bitterness. Being better requires that you face the tragedy, process it, and work towards healing. It can be exhausting, but far more rewarding.
Several months later I found Jeanine, another Christian grief counselor who helped me find my right path to healing. My turning point came when she said, “Keira, you love Zoe deeply and completely and you have to let that be enough. Let that be enough. You don’t have to do anything else.” Nothing can quantify or measure the love I feel for my daughter, or your love for your child. Your love IS ENOUGH.
I met once with another mom of 25 weeker triplets. She told me this: “Guilt is an unproductive emotion. It does nothing positive for anyone, you or your family. So, just toss that one out the window.” Straightforward and to the point!
Not long ago I wrote a post for Preemie Babies 101 entitled “A Letter of Gratitude”. I quoted a dear friend who was widowed several years ago. In the dawn of my acceptance of Zoe’s death, her words ring so true, “I loved him more than anything. But, I can’t change the fact that he’s gone. So I choose to live a life of gratitude. I choose to be thankful that I know what it feels like to love and to be loved.”
As you struggle with your own If Onlys, Could Haves, and Should Haves, whether due to your child’s premature birth or the devastating loss of your baby, remember these four things:
- You can be bitter or you can be better.
- You love your baby deeply and that is enough.
- Guilt is an unproductive emotion.
And finally, the most difficult:
- Choose gratitude.
Remember to give yourself time. Everyone processes their own traumatic experiences in their own way and in their own time. I strongly recommend seeking the help of a professional counselor experienced in treating PTSD or a grief counselor who can support you along your path.