Devon Renae Jenson was born on June 14, 2000. She was the second daughter for my big brother Daren and his wife Dawn. Their other little girl named Drew was 2 years old and was the apple of my eye. When Devon arrived, my heart exploded with more joy than I thought was possible and I knew that I for sure wanted to be a mother myself. Drew and Devon were my girls - it was the first time I ever understood what it meant to love someone more than you love yourself. It was as if my heart was now beating outside of my body and inside these two girls. Devon's birth seemed to be completely normal and we were thrilled to have this gorgeous new member of the family join us. However, at about 24 hours old, she went into distress. We knew something was very wrong but we had no idea what it was. Devon was rushed to Children's Hospital in Minneapolis where we learned she was born with a rare and often fatal heart defect called Hypoplastic Left Heart Syndrome (HLHS). In the most simplest terms, she was born with half a heart. We were all devastated. I remember walking into Children's for the first time, carrying Drew in my arms to see Devon in the NICU. Drew put her hands on my face and said, "I love baby Devon." I just held her close and tried to not show her my tears and sheer terror.
The doctors gave us 3 options for Devon:
1) put her on a heart transplant list - although we were told the chances were slim for us to have a donor baby heart arrive in time for her to survive.
2) go through a series of operations over her first few years to try to "re-plumb" her heart so it could function well enough for her to live in the hopes that she would one day find a donor heart.
3) bring her home and love her for whatever time we are given.
Daren and Dawn chose option 2 and as a family, we embarked on a roller coaster of extreme highs and lows and we savored every second we had with Devon. She had multiple surgeries in her short life as well as hospital stays whenever she caught a cold because it would turn into pneumonia. We banded together as a family to hold each other up and hoped we would be able to keep Devon with us. Unfortunately, that wasn't the hand we were dealt. Devon went in for what we hoped would be her last surgery for quite some time in September 2003. She made it through that surgery and we all thought we would be "safe" for awhile. However, Devon's body did not react well to the surgery and she contracted a relatively common infection called RSV. But with her fragile health, the infection ravaged her and she started to falter. She spent the next six weeks in the hospital - as we did everything we could to keep her with us. Six weeks of agony, stress, tears, hope, despair, love, desperation, sleepless nights, grueling days...but we never gave up.
However on November 13th, the doctors informed Daren and Dawn that there was nothing more that could be done to save our baby girl. At approximately 5:30pm that evening, her machines were turned off and she peacefully left us. Every year, around mid-October, I find myself going to a darker space within myself. I re-live the events. I get lost within. I have a more difficult time coping with the stresses of life. I am always grateful but there tends to be a shadow over me that is hard to come out of.
In 2010, I posted the eulogy I wrote for Devon's funeral to my facebook page. I would like to share it here as well. Thank you for taking the time to read it.
November 12, 2010
"It is that time of the year again when I struggle to put on a happy face. I have a lot of wonderful things happening in my life right now that I am so grateful for - especially with the rocky road I had to travel on over the last couple of years. But even with the wonderful people in my life today, there is still someone missing. My niece Devon died on November 13, 2003. She was nearly 3 1/2 years old. She was my baby - she IS my baby. Not a day goes by that I don't think about her and yearn for her to be with us on Earth still. I can't say that I am a believer in any religion but I do have faith that there is more for us than life here. There has to be. Below is the transcript of what I said at Devon's funeral. My brother and I are alike in many ways and both of us had written out some words of what we needed to say that day. We walked up to the pulpit together and supported each other while we poured our hearts out to so many friends and family gathered to show their love for us - and for Devon. What I wrote was unedited and came from my soul. There is mention of my ex-husband (my husband at the time though) in there and I considered taking that out for this note today. But I decided I would just keep it all in there - even though I now find it embarrassing that my mention of him is in conjunction with finding dress pants for him at Target. Who goes to Target for dress pants? Apparently I did in November 2003 while in a depressed fog over the loss of my beloved niece."
Did you know that you are looking at one of the luckiest people in the world? It's true. No, I didn't win the lottery. I don't own a huge house and I don't have lots of nice cars or clothes or jewelry. My good fortune transcends anything material. I am the luckiest person in the world because I got to meet an angel. An angel named Devon. I have often wondered these last 3 years and 5 months how many people met Devon or even just glanced at her in a store and never knew how lucky they were because they were in the presence of an angel and didn't know it. I'm sure many of you have recognized those amazing blue eyes held far more wisdom than a normal child. Perhaps some of you even knew yourself that Devon was more than just a beautiful little girl - maybe you too saw that glowing aura about her that only an angel could have.
I don't know if I am like most aunts. I have always felt that Drew and Devon were as much my girls as they are Daren and Dawn's. It is because of Drew and Devon that I knew I wanted to have kids of my own. If anything, having my own daughter has just strengthened the love I have for Drew and Devon. A couple of years ago, Daren and my husband Jay were watching me play with Drew and Devon. I was just hanging out with my girls like I always have done. Jay turned to Daren and said, "I hope Kris loves our kids half as much as she loves yours." And Daren just smiled. He knows how I feel about his babies. After Devon had passed, Dawn was holding her and I sat on the floor, just wanting to be near. Daren came in the room and Dawn asked Daren if he wanted to hold Devon. He said, "Kris can first." And I looked up at him, sort of shocked - I didn't expect them to want anyone to hold her. I said, "Are you sure?" And Daren said, "Kris, she's your baby too." Thank you Daren and Dawn. Thank you for giving me the gift of sharing Devon with you. Thank you for letting me be a part of everything. I was allowed to hold that wonderful creature soon after she was born and soon after she had died - it was the most precious moment of my life.
I would have taken Dev's place if it meant she could have lived. I would have given her my heart without a second's hesitation. I don't say this lightly. I mean it with everything I am. I would have no regrets or reservations.
As I struggle with my grief, anger, and confusion at her passing, I am also feeling a sense of peace because I know absolutely everything was done to keep Devon with us but it just wasn't meant to be. It was not in our control. And then a couple of things happened to me this weekend to make me believe that Devon is in a better place.
On Saturday night, I went to the video store. I wanted to rent some movies so that I could zone out and forget the world for awhile. I picked out a bunch of movies and stood in line to pay. While I waited in line, I noticed an area with kids toys and I saw a Hello Kitty blanket. Immediately, I thought of Devon. She loved Hello Kitty. And I sort of sank into myself, thinking about her, oblivious to the world around me. Someone said, "Ma'am, you're next." I walked to the counter and handed my videos over. The man at the counter said, "If you rent one more video, you get a $5 gift card." I absently said, "Oh, ok," and walked off to grab one more video and set it on the counter. Again I was lost in my own world when the clerk said, 'You have a free rental on your account. Do you want to use it?" I said, "Yes" and then looked up at the clerk for the first time. His name was Devon. I just shook my head and a small smile came across my face. Coincidence? Maybe...
Then on Sunday night, I went to Target to return some clothes and to look for something for Jay to wear to the memorial and funeral for Devon. I wandered through the mens section and didn't see anything good for the occasion. Normally, I am the type of person who goes into a store for a specific item and then leaves right away - I don't wander around. Well when I didn't find anything for Jay, I did wander around the store, looking through the toy section, wandering through electronics, staring at calendars and address books - lost in thought about Devon. I finally told myself to leave the store and passed the mens section again. I decided I would look around one last time. This time, some nice pants caught my eye and I started to look through them for Jay's size. I found it and pulled the pair out. The pants had names on the label to signify the particular style and the name on these pants was Devon.
On both of these occasions, the time I saw the name "Devon" was also at the time that she passed away Thursday night. It was as if she was trying to yell at me that she is here.
Devon is still with us. She is all around us and within us. She will be with me every day of my life. Whenever I look at Drew or Abi, I will see Devon and think of her. Devon is an angel and now she is the one who will take care of all of us.
Daren and Dawn, I am so grateful to you for bringing this miracle into the world. I cannot express properly how much I admire you two for your strength and devotion to Devon. The pain you are feeling right now is something that most of us cannot imagine. All I know is that the pain I feel right now is overwhelming but my love for Devon is still stronger and the memories I have of her brings me some comfort. I will always feel that someone is missing but I know she is with us.
I would like to close by reading something I wrote soon after Devon was born. Most of you have probably read it from the caringbridge website or in her obituary but I still want to read it now. It says everything I feel for her.
Being born with half a heart does not make you half a person.
It means your heart works twice as hard to make each beat.
But it is also twice as strong.
You are twice as brave.
Twice as beautiful.
Twice as loving.
Twice the person I hope to be.
You are my hero.
I love you baby. Auntie Kris loves you Sweet Pea."