Ellie’s Gift: Lessons I’ve Learned from my Dying Daughter

I have a daughter. Eleanor Elizabeth Bowman. A big name for a tiny, 23 pound 4-year-old.  We call her Ellie, and it suits her. Like most parents, I think my daughter is the most beautiful being to ever walk this earth. She is delighted by the most insignificant, simple things – the button that starts the dishwasher, cracking eggs into a pan, blowing bubbles. I believe seeing the world through a child’s eyes is one of life’s greatest gifts.

Unfortunately, I also see the hardest parts of life through my daughter’s eyes. Ellie is dying. It has taken me 4 years to be able to write that sentence.  Born with a genetic condition called 22q11.2 deletion, Ellie has several severe heart defects, pulmonary hypertension, a soft palate cleft, adrenal insufficiency, and many more diagnoses. My husband Patrick and I have gotten used to the terrifying names of the 220 possible health problems associated with 22q, but nothing could have prepared us for Ellie’s most recent diagnosis; terminal heart failure. Despite the 3 open heart surgeries, a diaphragm surgery, and more procedures than I can count, our sweet girl’s heart and lungs are worn-out.

Recently, Ellie caught a cold. Rhinovirus. For most of us, rhinovirus causes a few days of congestion, headache, and annoyance at the disruption in our daily schedule. For Ellie, it caused an emergency helicopter ride to the hospital, and heart failure so severe that the doctors asked Patrick and I if we wanted them to save her or make her a DNR. DNR – Do Not Resuscitate. In my mind, those words only applied to the elderly people who had lived a long full life and were ready to move on from this world. These words were not for children. Certainly not for MY child – my beautiful, happy, curious child so full of light and love and everything that is good.  No. These words do not apply to her. That is what I told the doctors, and thankfully Ellie survived.

In a way, it was good that we had that scare. In those dark hours, when the doctors were preparing us for the worst, we experienced what it feels like to face Ellie's impending death. We felt desperate to hold on to her. The things we had always said we did not want for Ellie's life and death in hypothetical situations suddenly became our only options.  We realized we were willing to do almost anything to save our only child.

Ellie is stable for now, but we have to face the fact that we will probably be in another scary situation soon. We have some big decisions to make. The doctors have told us that this is the best time to make these decisions – the fear is still very real but the desperation has subsided.

I completely changed my mind about a heart and double lung transplant after the DNR conversation. My husband and I have always said that we wouldn’t put Ellie through such a risky surgery, but when the transplant team suggested that she might be candidate, I started clinging to that little sliver of hope. When your options are certain death, or almost certain death with a tiny percentage of hope, the decision seems easy.  But that tiny percentage of hope comes at a very large cost: living in the hospital for months while on the waiting list, a grueling surgery that she might not survive, and months of recovery with a million possible complications. Putting Ellie through a LOT of pain. Straining our family and our resources even more than we already have. Even if Ellie survives the transplant surgery and recovery, it is unlikely she would live more than a few years. We might just be prolonging the inevitable.
 

Our other choice is to keep going the same way we have been, and brace ourselves for the time bomb that is Ellie's heart. Trying to cherish every day at home, but also being very careful not to expose her to too many germs. It will only be a matter of time before she contracts another illness, and next time we might not be so lucky. Death from heart failure is not painless either. It usually starts with organ failure from not getting enough blood flow and quickly goes downhill, or the process is sped up by an acute illness. I say this only because there is probably no situation where Ellie dies painlessly in the arms of her parents while watching a sunset at home. This is not a movie. It's reality. All the options suck – they are all horribly scary and painful.

I don’t know how we will find the guidance and strength to make these decisions. Some days it seems like some horrible form of torture. To decide how your child will die. It is hard to imagine a choice that will not lead to immense guilt in the future.  I do know one thing though – when I look into Ellie’s eyes I don’t see fear or sadness. I see love, and joy, and a fierce will to live. I see HOPE.

When I look at the world through my daughter’s eyes, I learn profound lessons about life. Ellie isn’t worrying about her future. She is happy every single day, whether she is at home or in the hospital. She has never known a life without pain, surgeries, and prolonged hospitalizations. Yet she lights up the room with her contagious smile and deep belly laugh, often smiling and waving at the nurses as they poke her with needles. She is, and has always been, surrounded by people that love her more than anything in the world. She loves a good meal, her family, and her favorite episodes of Peppa Pig. She lives fully in the present, enjoying every minute of her life in true 4-year-old fashion.  

No matter what happens, Ellie has given us a wonderful gift.  Patrick and I have always known we were operating on borrowed time with her. This has given us a unique perspective towards parenting. We have tried to cherish every moment, every seemingly insignificant day.  We let her eat ice cream for breakfast and stay up late with us. She shares our bed and we cuddle every night. She has taught us not to bother comparing ourselves or our situation to others, and to focus on the things that are truly important to us. Most of all, she has taught us how to appreciate what we have right now, instead of worrying about what we might lose in the future.  

Do me a favor. Hug your children and your loved ones tightly today. Share our story.  Be conscious of your blessings and what a privilege it is to be in good health. Life is precious and not guaranteed. Don't waste your time worrying about the small stuff.

Please remember Ellie if you are having a rough day. The best messages I receive are from people sharing how Ellie has changed their lives by helping make them a better parent, or spouse, or human being. A small shift in perspective can go a long way; I have to believe that Ellie's life and death are not in vain. If my sweet daughter has to die, it will help to know that her life made this world a little kinder, a little brighter, and a little more beautiful.  

Ellie’s parents set up a fundraiser to help support her care – you can contribute here.