We received information this week about the recipients of Hayey’s Organ donations. The gifts. After I called about 12 people to tell them specifically about the recipient of Hayley’s heart, I decided to sit down and write a letter to that nameless woman. I wanted to write it while it was fresh and real. Well the letter turned out to be more of a journal post and 7 pages. I am still deciding on if I send this version or maybe ease her into Hurricane Dawn. I will probably share the depth of detail for future correspondence. I am going to share the letter now because it is the most real thing I have written. It made me really understand what Organ Donation meant to our family. It made me realize that it was not the recipients that needed to thank us, I needed to thank them. Thank them for allowing part of Hayley to live on and for me to have a purpose in that horrible time.
September 2, 2017
Dear “Recipient”,
“Recipient” seems so impersonal a way to address you. We are now connected in a way that is really beyond imagination. Typing this letter also seems impersonal. I feel that I should be hand writing this. But due to my handwriting, I am going to type because I want you to be able to read it! Plus, it is going to be a long letter.
I am Hayley’s Mom. My daughter’s heart continues to beat thanks to you. We are so grateful to you. You gave me the gift of not witnessing my daughter’s last breath. Because of you I did not have to watch her heart stop beating. Because of you, I could say goodbye, lay my head on her chest, hear her heart beat strong and give that heart my blessing to beat for another. During the worst weeks of our lives we were faced with decisions that no parent should ever have to make. This was not supposed to happen. I am uncertain where to start and what information to share with you. I need you to know that you have provided me with comfort during an incredibly painful time. I think I will just tell you the entire story.
Our donation story:
Hayley turned 19 years old on April 29th of this year. She had just finished her first year of college at Western Washington University. She loved Bellingham. If we meet I can tell you stories about how homesick she was that first quarter, how our relationship grew and what we learned about parenting college freshman! Since you have three children, I am guessing you would appreciate that advice. Hayley loved her family, Scott her father, Henry her 15-year-old brother, myself and our three rescue dogs. Everyone says their child loves their family. But I mean she LOVED us. She humbled us with her love. We worried at times that it wasn’t normal or healthy for a teenager to like her parents this much, maybe we were doing something wrong.
Hayley was my daughter and my best friend. She would rather spend time with me and my girlfriends than anything else. Don’t get me wrong she had plenty of other friends. But we needed to be near each other always. That is one of the reasons she chose WWU. We were less than 2 hours away from each other and because of my job and her job we never had to go more than 14 days without each other. We worried this was keeping her from really becoming connected to college and making new friends. But she had so much love to give she was able to balance both and was ready to really spread her wings September 27th with the start of her Sophomore year. She was majoring in Sociology with Criminal Justice as her focus. She was on track to graduate in 2020, the same year her brother graduates high school. She was well on her way and her class schedule laid out all the way to graduation to earn her major and a minor in Psychology and Communications. I would love to tell you in person about the ride-along she did with the only female campus police officer and how much this solidified that she wanted a career in law enforcement. She wanted to change lives and make a difference. By saving and changing the lives of so many people with her donations she basically accomplished her career goals on one big day.
Hayley’s passion was Dance. From her first dance class at age 3 she was hooked and I was in for quite a ride. Now I was not just a Mom but a Dance Mom (ugh). She trained in Ballet, Jazz, Hip Hop, Lyrical and Tap. She began competing at the age of 7 with a local studio. She competed with several studio teams until Freshman year of High School. At that time, she had the opportunity to be the first Freshman class at a school with a very competitive team. This team change helped to reduce our travel load and be involved in school spirit. She made this team. She was so happy. We have been told that you are a dancer, but what does dance have to do with her donation story, you
may be asking. It does. During the third year of competing we had an “issue”. Back at the start of sophomore year she had been hospitalized for ovarian cysts. She ended up having her first surgery and being diagnosed with PCOS. One of the symptoms of PCOS is weight gain and brutal hormone issues during puberty. During her Junior year she began to grow and gain some weight. Her breasts grew from perfect size B to large double D. The coach had a taste for skimpy and daring costuming much to the horror of the parents. But this was a situation where if you messed with the coach, she messed with your kid. This was the first domino in a row that led to Hayley’s death. This costume was backless and strapless. Which is quite an amazing feat. The costume looked beautiful on girls with size A or smaller. This described most of the team, with one exception. During the first competition one of Hayley’s girls came out of her costume and she had to continue to dance for an excruciating 3 more minutes. I spent the next few months leading up to the state competition trying desperately to make this costume work for her. She was mortified and self-conscious. They do not make backless and strapless dance bras for a 34DD. The coach promised to make costume changes for the state competition. Many of the other girls were thankful to hear this. Two weeks before state she cut Hayley from the performance instead of changing the costume. Not one to stay quiet when someone hurts my kid, I brought it to the attention of administration and we got nowhere. In fact, at the next tryout, she cut Hayley from the team entirely, a fourth-year senior. A returning member had never been cut from the team during this coach’s ten-year tenure. You can imagine the devastation. She had been on a dance team for ten years at this point. She danced 20-30 hours a week for years. She was never the best on the team, not even close. But she always smiled and she loved it. The rest of the story is irrelevant. Her passion was taken away without notice. Her spirit was damaged. Her self-esteem low. This is when she started talking about wanting breast reduction.
For the next two years it was all she could talk about. By the end of her freshman year of college she was a 36H. Yes, an H for Hayley! I still encouraged her to wait until after college. At the same time, this summer my job with a local nonprofit ended. We have more in common than just my daughter’s heart. In 2009, I suffered Cardiac Arrest at the age of 38. Heart Disease ran in my family. It killed my father at age 52. This won me a pacemaker and led me down a path of volunteering for the American Heart Association. DON’T FREAK OUT. Being a very paranoid Mom, both my children have been screened multiple times and did not inherit my heart condition or my eye color. Your new heart is perfect!
In 2012, I changed careers to run youth programs in Western Washington for AHA. I worked with schools fundraising for people with special hearts. My focus was Jump Rope for Heart, in Elementary schools. My job was to fundraise, educate and create awareness about heart disease with a focus on women and moms. I raised over two million dollars in four years. I also developed a passion for working with High School students and started a mentoring program where I worked with a handful of High Schools to create awareness amongst their peers for prevention, and CPR. I covered Blaine to Auburn and was the contact for 800 schools. This is what allowed me to spend time in Bellingham during Hayley’s freshman year at WWU. Hayley was constantly by my side. She worked the Heart Galas, Go Red for Women Luncheons, the Heart Walk and even wore a Lion costume at school assemblies this past year.
The physical demands of this job finally caught up with me last fall. Often driving 200 miles a day and organizing 200 events in a 9-month time frame was physically demanding even for the younger directors. Add being someone living with Heart Disease and it was a recipe for disaster. My job ended for these reasons in April. We made the decision that I would not look for new work until the fall. I will forever be grateful for the time she and I spent together from June 6th to July 11th. I had good insurance with AHA that would be ending at the end of July. Hayley was still insistent that Breast Reduction was what she wanted. She had gained a maturity over the past year. I knew this was not just about what happened her senior year but a thoughtful decision made with her health in mind. It is very difficult to be physically active with a 36H rack.
I relented and made her a consultation appointment in June with a surgeon recommended by friends that had been to him for mastectomy reconstruction work. I told Hayley that if the insurance agreed to pay we would go ahead and do it in July to allow time to recover before school. But honestly, I had heard from so many people that insurance companies make you jump through so many hoops before they will pay. I just didn’t think it would happen. She knew if insurance did not say yes, it would have to wait until I was working again. I was shocked two weeks later when surgery was approved as 100% medically necessary and her surgeon said it would be “life altering” for her. Her pain would go away, she could be active and her confidence would return. The surgery was scheduled for July 11th. He fit her in because he just really fell in love with her personality and wanted to make this happen for her and he was due to leave for a long vacation and it was now or wait until next summer.
I will tell you what happen, but not in detail. I would prefer to share those personal details in person. To be honest they are still very raw emotionally. The surgeon used an upper half epidural for the surgery. I did not even question this decision because that should be much safer than general anesthesia. From the minute, they handed her off to us in recovery she was vomiting and had a horrible headache. They sent her home with us, it was a Tuesday. By ten that night on the advice of our surgeon we were in the emergency room of the Issaquah Swedish Hospital. The symptoms appeared to be from a lumbar puncture from the epidural. She was admitted to the hospital to control her pain and decide how to proceed. She did not receive adequate care. At one point our plastic surgeon drove to Issaquah and begin giving orders on how to care for her. She had not eaten in several days and threw up every 1 to 2 hours, yet they had removed her IV Fluids. He even threatened to put her in his car and take her to Seattle where they had more depth in their care. On Saturday, we chose to discharge her ourselves with the plan to take her to an appointment Monday in Seattle to a specialist. We were exhausted, but she seemed to be turning the corner. On early Monday morning things escalated and we had her transported form our home to Swedish First Hill. They struggled to control her pain. By 10:00 am a CT Scan finally revealed a clot on her brain and she was transferred to Swedish Cherry Hill ICU around 7:00 pm. I will not share all the details unless you need to know. But at 1:00 am Tuesday, Hayley suffered a stroke. I witnessed Chest compressions being done on my child. They could intubate her and go to surgery. The clot was extensive and in a very rare location. It was incredibly rare. The surgeon that tried to clear the clot is the one that has performed the most of these surgeries in the nation. Her body survived the surgery on Tuesday, July 18th. We were told the surgery was not successful. There was too much damage and we would have to wait and see. As a mother, I knew. I was not shy to look in her eyes. I knew she was gone. The shock set in. I am not telling you any of this to make you feel bad, do not cry for me, I have a huge support group of friends already doing enough crying for me.
I just need you to really hear me. You are the reason I survived the next week. It was all about you.
On Wednesday, we were told she was probably brain dead. Scott and I sat with our pediatrician as we listened. We all were holding hands. He asked us to sign a Do Not Resuscitate Order. I refused. He again persisted. I asked him has it been determined 100% that she is gone. He said the protocol to declare her officially brain dead was not complete yet. With our pediatricians support we refused to sign the DNR. Again, I truly knew in my broken heart she was gone. But there was this tickle in my brain that I could not quite reach. It told me this journey was not over.
On July 20th at 9:31 p.m., Hayley was pronounced dead. It was surreal. She was warm, I could hear her heart beat, I could hold her hand and caress her face and her hair. She was truly beautiful. Again, we were asked to sign the DNR. We did. At this point Scott and I retreated to privacy to make decisions that are every parent’s worst nightmare. My brain barely was functioning from lack of sleep, stress and ugly crying for days. Remember that tickle, it was still there and I was desperately trying to reach it. Finally, I did! I asked my partner in life of 27 years did I miss the mention of organ donation? He said no, that was never mentioned. He said I think that is what Hayley would want. I told him I KNOW that was what she wanted. I begged him to find that doctor and rip the DNR to shreds until we asked about the possibility of organ donation. While Scott sought out the Doctor, I told my friend to guard Hayley. If she coded I didn’t care if she had to do CPR herself but we were not done yet.
You see I DID KNOW.
About a month before, I waited in our front room for Hayley to get home from work. It was Father’s Day Weekend and she was home from school to work a weekend and be there for her Dad. I had the news on. As was our routine she threw herself in the other chair and complained about her feet and how rude customers at the café had been. A story caught our attention. A man, Bill Conner, was riding his bike from Wisconsin to Florida to raise awareness about organ donation and to tell the story of his Daughter, Abbey. Abbey had died tragically at age 20 while on vacation with her family in Mexico. Abbey gave the gift of life. That day in New Orleans as he rode his bike into town a young 23-year-old man waited for him with a stethoscope in his hand. You see he was the recipient of Abbey’s heart and his Father’s Day gift to Bill was the opportunity to hear it beat again. I sniffled. Hayley said, “Mom are you crying, Geez!”. I denied I was but noticed she reached for a Kleenex too. After the story was complete and our tears (the ones that were not there) were done. I turned to Hayley and asked, “Hey would you ride your bike across several states to listen to my heart?”. Her quick-witted response was “F@$k NO, but I might consider riding one of those cute mopeds, it would probably be retro blue”. She then asked me the same question that she asked me the day she was 15 and we were in the DMV getting her permit. She was asked if she wanted to be an organ donor. She said, “Mom why would somebody NOT be an organ donor?” I didn’t have an answer. I came up with some possibilities but we both agreed that as far as we were concerned anybody that did not donate if they could, was being selfish. Yes, it was judgmental but it was how we felt. That day in June, Hayley was passionate and thoughtful in this conversation and very clear about what her decision would be. She then transformed back into a 19-year-old, said she was taking a shower and catching up on the Kardashians.
So, you see, I did KNOW. Hayley wanted you to have her heart. This was HER choice and I could not be prouder of my child. This was when LifeCenter Northwest became involved. We answered all their questions and listened to how complicated the process would be. Our team was amazing. (remind me to tell you the tattoo story) We were not leaving that hospital until she did. Pretty quickly we learned that we had a match for both kidneys and that both were 100% matches. Which we learned later was extraordinary beyond comprehension. It would be as if those two strangers were receiving their own genetic kidneys. We talked about other organs and the work that was being done. It was explained that most procurement surgeries take place at night when the Operating Rooms were available. Each evening for 4 days we had to make the decision if we could wait one more day to continue looking for matches or to proceed on the kidneys. I asked constantly about her heart. You see there were no takers yet. I was appalled how could no one want my beautiful, loving compassionate daughter’s heart. But there was hope that day, her heart function had improved significantly over night. If we could stay the course there was hope that a match might be found. I can only tell you that yes it was a roller coaster and it delayed the inevitable. We were not leaving that hospital with our daughter. She was our sunshine. Our family truly revolved around her. But this is what I NEED you to hear. Those extra hours, days in the hospital were worth the extra pain because we knew without a doubt Hayley would want us to fight for her. Fight for her right to help as many strangers as possible. Her body and her heart were not giving up despite the doctor’s predictions.
Saturday night, I will confess when we got ready for the family meeting with our donor team, we were feeling the weight of our pain and were ready to go home. This is when we were told there was a potential match for her heart. Before it had been only a possibility of a match. Now we had a match, we had a recipient to think of. It was not some random endless list of people. There was a person. That person had family and friends. I knew that this was my final purpose as Hayley’s mom. It was my job to make sure she got through that night and that I might have the chance to hear her heart beat for another. Prior to Saturday I struggled to stay in her hospital room for extended amounts of time without losing all my strength. My husband spent the nights with her, there was only room for one of us in the room. That last night he finally crashed in our little rented room on another floor. It was my job to guard her for that final night. You see we never left her alone that week. We had a support group made of family and my fierce group of girlfriends (always known as the B.U.M.s, Back Up Moms). All of them were just as determined to make sure our wishes happened that week. There was always one of us in that room. I was obsessed with making sure she made it to procurement. I encouraged her, I did everything to make her comfortable that night. I spent that night telling our amazing nurse all about Hayley. That morning we were told that the recipient’s surgeon was willing to move forward with the transplant despite less than perfect numbers on the tests. I knew in every cell of my weary body that it was going to happen. We had a time, 5:00 Sunday, July 23rd. Hayley was going to save the lives of two kidney patients, a liver to Canada, corneas for sight and countless others with tissue donation. But I thought of that father on the bike and the dream of hearing my daughter’s heart beat for another. Her heart had found its next home. This gave us feelings of hope, love, pride and comfort that were a balm to the grief and excruciating pain we were feeling.
Her amazing night nurse asked to come back even though it was her day off and personally escort Hayley to the O.R. Our support group waited outside of her room as we met the procurement team. They were amazing compassionate people. We knew we were handing over the most precious thing in the world to them. We were not just putting our daughter in their hands but giving them the enormous task of making Hayley’s passion for organ donation a reality. Our nurse, myself and Scott held hands and walked behind Hayley as she was taken to the elevator. Our team of friends and family, walked behind us. It reminded me of a parade.
You gave me the gift of not having to witness her last breath. When she left our presence, she was alive and had a purpose. The essence of Hayley was gone, but her body would accomplish something miraculous. It was the greatest comfort. We waited until the elevator left and came back empty. We finally left that hospital after a week and our support group gathered at our home. We all waited to hear that the surgery was done. We finally ate, we all cried and we told Hayley stories. I could not focus on what was happening, but only what the result would be. We were not expecting to get the call that it was complete until after 10:00. At 8:13 on July 23rd I received a text from our donor team. Well – Hayley’s heart is PERFECT! There was more about her Liver and Kidneys. I barely saw that. I took the first deep breath in days. Of course, her heart was perfect. She was Hayley. I had fulfilled my duty as her Mother. We were so deeply grateful that because of Hayley several other families were not going to walk the same path that we were on. I need you to know that YOU did that. You gave us comfort that no hugs could. Something good from the bad. I could not have her back but another family could have their person back.
Last night we received the letter from LifeCenter that gave us a little information about our recipients. I got the mail late in the evening. We debated opening it. My husband thought we should wait but he knew as soon as he went to bed I would be opening that letter. I HAD to know if the recipients were doing well. I needed to know if I had to grieve for another person. I read the letter out loud to my husband in a steady voice until I reached the 5th paragraph and had caught some key words. I was barely able to get the sentences out.
Hayley’s heart was given to a woman in her thirties with three children. She began feeling better immediately following the transplant surgery, and is looking forward to spending time with her family, and returning to yoga and dance classes. She is so thankful for this amazing gift.
We were both crying hard when we read three children. When we saw the word dance it was an all-out sobbing, ugly cry that startled our son when he walked in to see what was going on. I cried out “Hayley’s heart will dance again; our person is a mom AND a dancer. I am so happy”. I think our son was confused by the happy part, and a bit skeptical because both of his parents were weeping at this point. I then spent the next several hours calling every single person that had supported us that week. Some didn’t even mind being woken up. I read them the entire letter and just like us they all begin to weep at that 5th paragraph. So many responses “How could that happen? How could her heart go to exactly the right person? A mom and dancer, are you joking”
I scanned the letter and emailed it to my brother and sister in law and my mom just so they could see it in black and white. For the first time in a month I felt that the nightmare that started on July 11th had ended and we could move on to the next phase of our tragic journey. My grief is not less. My pain is not softened. My days are not less lonely. But now there is that tickle again. Except now I know what that tickle means. That tickle in my grieving, hazy brain is hope. Hope that Hayley’s heart, the one I heard for the first time this exact week 20 years ago in utero; would continue to beat for you. That it beats long enough to raise your children, long enough to have the memories that I won’t experience with Hayley. If this letter is it. If we don’t meet. I will survive. But that tickle is there, the hope that I can say to you and your family in person, to say Thank You for what you gave us. They say the donor family is the one that gives the gift of life. I disagree, the recipient also gives a gift. The knowledge that Hayley has made a difference for another person validates my love for her and my role as Hayley’s mom.
I look forward to telling you Hayley stories. I want to tell you about her amazing sense of humor, her love for Disneyland. I want to tell you about the #belikehayley movement, the glassybaby named after her. I want to tell you about her service, about the number of people that she impacted in her short 19 years and how admired her heart was. I want to tell you about her love of music. I even want to tell you about the times she drove me crazy and her potty mouth.
I would love to meet you. I would love to know what I should call Hayley’s heart. Because it is no longer hers, it is yours. I would love to have your name so that I can call it something other than the “recipient’s heart”. Your joy in no way will make my grief worse. Nothing is going to take away my pain. But know that meeting you and your family would be the greatest gift you could give to our family.
With Pride, Joy, Grief & Hope,
Hayley’s Mom, Dawn
You are phenomenal, Hurricane Dawn!
XO
C