It's November 30, 1998, I'm at Sick Kids Hospital in Toronto Ontario… My 8 year old daughter Rachel has been transferred here 2 hours ago after spending the night at Ajax Hospital due to a flu bug she has been fighting for a week.
The doctors haven't figured out why Rachel is so lethargic and what kind of flu bug she has. The paediatrician at Ajax Hospital advises me that the flu bug has triggered a condition called Idiopathic Thrombocytopenia Purpura (ITP) where your antibodies attack your platelets instead of the virus.
My ex-husband and I are standing by her bedside while they poke and prod her, taking blood to check her platelet count. It seems like they are drawing blood every 5 minutes. If the platelets get too low there is a slight chance (less than 1%) that she could get a spontaneous bleed in one of her organs. Rachel remains asleep through all the commotion. I feel like a helpless bystander.
I stepped out of the room to check in with my work messages. When I return to Rachel's room, reality punches me in the face. The doctors still haven't figured out what is going on with the flu virus. Rachel sits up and looks at me with her eyes glossed over, but somehow as only a mother would know I hear a cry for help wash over her. Her limbs are stiff, she is trying but unable to move and she is very agitated. I call for help and the doctors come running. I tell them something is very wrong. I think she is having a stroke because her right side won't move.
They order a CT scan suspecting that the virus may have attacked the brain, or there is a bleed in her brain. I have never been more horrified in my life. The CT Scan confirms that there is in fact a bleed in her brain and they have to operate. But first they have to get her platelets up to a high enough level so she doesn't bleed to death while they are removing the front left lobe of her brain to release the pressure.
While we wait in the waiting room, family and friends start showing up at the hospital to offer us their love and support. They tell us that once they remove the front left lobe of the brain it will change her personality, her motivation and her memory will be affected. Immediately, I go to the chapel and drop to my knees in a heap and surrender Rachel to God. They call me out of the chapel and tell me we have to hurry. I run down the hall beside her bed as we wheel her to the operating room. I kiss her and tell her to be brave and I will be praying and waiting for her.
2 & ½ hours later the surgeon comes out and tells us that Rachel didn't make it. She is pronounced brain dead at 7:30 a.m. on Dec 2, 1998. The hospital is silent from the night shift except for my desperate fatal scream that echoes through the whole hospital.
As we gather around Rachel's bed, she still feels warm to touch, it doesn't seem like she is dead. They explain that the machine is keeping her breathing. Her heart is beating but her brain is dead. I say "Ok, well what do we do now, how do we fix this" and the doctors and nurses just look at me. I look at my Mom as she puts her arm around me and it sinks in, this can't be fixed. Shawn, my 6 year old son, crawls up on the bed and lies on top of Rachel kissing her. Shawn looks up at me and asks "Who's going to walk me to school?" I reassure him he won't have to walk to school alone, while I ask myself questions like "What about her dance recital later this month?" "What about high school?", "What about falling in love and getting married?" "What am I going to do without her" … the thoughts are racing through my head, and yet I muster up the strength and we say our goodbyes and send her off to be with Jesus.
The doctor asks me if I have considered organ donation and I immediately remember an incident 5 weeks prior.
In the Toronto Sun newspaper there was an article about a 12 year old boy that had undergone a double lung transplant. He was sitting in his hospital bed with his arms raised in victory. Rachel peaked over my shoulder and asked "why is he so happy"? I told her that his lungs were better. She said what was wrong with them? I told her his lungs were sick so he got new ones. Where do you get new lungs she asked? I told her what organ transplant was She said "oh" and she walked away and started playing… and then a couple minutes later she said "when I die, I want to give my organs to kids to save their lives". I was so proud of her in that moment. Never did I think I would ever be drawing on that conversation, much less 5 weeks later.
But in that hospital room in that moment of powerlessness helplessness, the loss of hope and reason for my life showers over me like a heavy grey blanket and the only thing I can do is to fulfill her wishes.
Rachel was able to donate her heart, lungs and 2 corneas. Her heart went to a 7 year old girl. Her lungs were flown down to Pittsburgh to be transplanted into a 12 year old girl who had undergone a heart and lung transplant surgery in 1991, and this was to be her 2nd lung transplant. One of Rachel's corneas went to an infant who was blinded at birth and the other went to a toddler who was blinded during surgery, giving both of those children the gift of sight.
The young girl that got Rachel's lungs died after 2 & ½ months from pneumonia, but Rachel gave her a second chance.
I met the young girl that received Rachel's heart 2 years later and created a close relationship with her. She died 2 years later after having many complications, having lived with Rachel's heart for 4 years. Shawn and I continue to have a close relationship with that family.
Paying It Forward
At Rachel's funeral, a man attended that played hockey with my brother. He was a writer for the Toronto Sun newspaper. He was very touched by the organ donation that was spoken of at her funeral and approached my brother to have him ask me if I would let him write a story about Rachel and her organ donation. I said "No.. my daughter died, it is not a news story". But after a week or so I remembered the impact that the story had on Rachel with the young boy having his lung transplant, and I reconsidered realizing that if Rachel's story could touch one person then we would be paying it forward. I met with the writer and he wrote a story about Rachel. It ended up on the front page of the Sunday Sun newspaper with a 2 page spread about her on page 4 and 5. The writer, Kevin Hann, won an award for this story and his editor encouraged him to submit it to the Chicken Soup for the Soul and it was chosen as the #1 story in the chicken Soup for the Parents Soul book and now her story is touching millions of people.
The Gift Of Purpose
Although tragic for me, I have been blessed with my most treasured gifts in life from this tragedy. By confronting my grief, I have been able to live again! I learned what was important and most of all I learned what I am made of, who I am as a person and who I am for the universe. I learned what my purpose is, how to strengthen my faith, my consciousness and my awareness, and how to share tragedy and have it be an inspiration to others.
It's been a long road in some respects and in others, a blink of an eye. Soon after Rachel died, I suited up and went back to work, but it was like I had brain damage. I couldn't think straight, concentrate, relay information from one person to another, or recall information I had read just minutes earlier. On certain days, even getting Shawn off to school was a large feat. I was a wreck and for me, if I couldn't do it well, I didn't want to do it at all. I had a lot of pride and I did not want my peers of 18 years to see me crumble. I thought it best for me to just leave gracefully. I left my corporate job after 18 years of employment. In order to keep the roof over our heads, I started cleaning houses. This allowed me the freedom to cancel on days that I was struggling and avoid dealing with the corporate grind as I called it at the time. I could just go home and cry or sleep or whatever I needed to do.
As time went on and I grieved Rachel's death, I got stronger and stronger, but let me tell you time does not heal. I have never worked harder in my life than the first two years of grieving. It truly takes something. If I had just sat around waiting for time to heal I would still be laying on my living room floor in the fetal position howling like a wounded animal. In my experience healing is a verb which implies action.
The Road To Recovery
My world was shattered and it felt like I was putting together pieces of broken glass. I was desperate to have the life I used to have and yet that was impossible because my life used to have Rachel in it, and she was gone.
I decided that after Rachel died, I would survive life, take it passively and make the best of it. I walked through life with that attitude and outlook, in the first year and at times, I just wanted to lay down and not wake up. Death at times seemed like a viable option, but then I chose Life. And it is a choice.
I decided life was going to be full of joy, happiness and laughter. And I decided Rachel's death was not going to define who I was but it was going to shape me into who I become. My circumstances would no longer determine how my life went, I would be doing that.
In 2008 my ex-husband committed suicide and it has been devastating to my son Shawn. From my own grief work that I had done with regards to the divorce, I was complete with my ex- husband and was able to host a memorial service for him and honour this man, and a life that mattered and be a demonstration of Love and Forgiveness in front of my (at the time,) 16 year old son. I continue to support Shawn while he works through his grief. I closed my cleaning business after 8 years and I returned to the corporate environment and stepped back into leadership roles and I enjoyed it. I continue to do public speaking, life skills coaching. I am also currently running grief recovery workshops and working with grief clients one on one to help them work through their grief and reclaim their lives in the face of loss so they can fulfill on their dreams.