One of the most difficult days of my life was June 25, 2015. It was the day that our precious Noah's heart stopped beating and was a day I wished I could go along with him. It's hard to put into words the horrific sadness and pain a person feels when their child dies. If you can imagine everything you thought, wanted or wished the world to be, sucked out from beneath you, the air from your lungs incapable of giving you the sustenance you need to live and then realizing that while you suffocate in sadness and hurt, your heart beats on, when theirs doesn't. I believe it the worst pain one can endure. Perhaps I'm wrong but my heart tells me I'm right.
When a child or baby dies too soon, there are very few things that can bring comfort. There are no words, no explanations to justify the loss and no amount of "I"m sorry's" that can help. In that moment of pure devastation and hurt, I think there is only one thing I found myself asking for and that was that
I wanted more time.
Time.... I wanted more time with my baby, more memories to create, more times to tell him how much I love him, and more moments to try to find a way to say goodbye.
After Noah's heart stopped beating here on this Earth, Jarrett and I invited our parents to join us as they escorted us down the long hall to a section of the NICU that wasn't used. Unlike the lucky ones who get to graduate to the "feeders and growers" side of the bay were transitioned to the dark end of the hall, where fewer people come by, where the lights are dimmed and the extra isolettes are stored. It is what it is but in those moments of feeling like my feet were carrying my numb body, I knew one thing... I didn't want to let his body leave me.
For approximately an hour, our parents, Jarrett and I got to hold Noah, got to tell him we loved him and we tried to find a way to celebrate what should have been his entire life. I remember holding him in front of me, no wires, no beeping machines, just him wrapped in a tiny blanket. He was at peace. I remember looking down at him and without saying a word I tried to tell him everything I could ever have wanted to tell him in his life. From talking about who he looked like, to telling him about how we would have loved to celebrate his birthdays, how much joy it would have brought me to take him to kindergarten on his first day. I could picture him wearing a red shirt with denim shorts and having a blue backpack way too big for his back weighing him down from behind. I smiled as I held him, and talked to him about our life together. I cried as I held him and long to be back in Pod D with those constant noises coming from all his machines. Instead I looked around the room and then passed our precious baby around for his grandparents to hold him. Their one and only time. I wondered how they must have felt. How robbed they must have felt to only have gotten to hold their grandson after his breath had stopped. It was all so unfair and the entire time, we knew we only had a few more moments together.
......
I was sitting at our kitchen table eating breakfast, another morning after my life changed forever. I had come out of the valley that is grief in losing a baby but still found my heart permanently marked with a wound barely scabbed over. The Today show played in the background and I listened as the kids rummaged around in their rooms getting ready for the day. A preview for the next segment came on and I remember putting my spoon to my cereal down, getting up from the table and walking over to the couch. The preview of what to come made my entire surrounding world disappear and the noise of our house become mute. I sat through the commercials not recalling what they were but taken immediately back to that afternoon hour of June 25, 2015 and I thought to myself, "if only we had had this that day." I waited with anticipation hoping the tease of the story was going to be as promising as it looked. A few minutes later I sat and watched the story of a family who lost their baby and had heard about a source of comfort for parents available for mothers and fathers after their child's passing and that gift was called a Cuddle Cot.
Here is the link to the
story that stopped me in my tracks.
A
Cuddle Cot is a specially designed bed for babies that have passed away that can preserve the body and give the families more time to say goodbye. Without going into too many details it is a bedside cooling device that prolongs the final moments and gives grieving parents the time to begin, even in the smallest of ways, the time they need to find away to say that final goodbye. Families can have many hours, even up to a few days to be able to spend with their baby. I wish so much to have been able to have that time. I'm very confident I am not alone in that wish, if one were to ask other grieving parents.
For the family in the story, they had heard about the Cuddle Cot and raised money to be able to donate one to their local hospital. As the story ended and the program went to commercial, I got up from the couch, walked over to my computer, sat down and opened up my email and started typing away. Less than 5 minutes later I hit send on an email to one of my nurse friends at the NICU and asked her if they had one of the Cuddle Cots and if not, if we could give them one. I then called Jarrett and said, "I know what we have to do for Noah's Kindness Project next year. We are going to donate a Cuddle Cot."
...
I started talking about the Cuddle Cot to all of my family and I sent a message to them asking them to consider helping us raise money. The Cuddle Cots are not cheap, over a few thousand dollars just for one. But I felt no hesitation in my determination that we had to find a way to gift one, even if it took us a few years to raise the money.
Our family supported as they always do but know many of them were balancing tight budgets as well. One night Jarrett and I were talking about the project and how we spread our budget out to make all the projects we want to do work, when I said, "Well if it takes us a few years that's okay, I just know we have to do this."
The very next day, at church our friends Carrie and Shane Faulkner and their beautiful kids greeted us after the service and Carrie and I got talking about Noah's Kindness Project. Their amazing, and I do mean AMAZING son Campbell started
Campbell's Crew Cares, a non-profit charity whose mission is to GIVE HOPE. While Campbell has faced more challenges and health obstacles that most of us combined ever will, Campbell wanted to start a charity to share love and kindness with others. I encourage all of you to visit his website https://www.campbellscrew.com/ and read about the truly awe-inspiring kid that he is.
As Carrie and I were talking, she said, "We want to support you in Noah's Kindness Project. Let me know what ideas you have." I smiled and while the idea was already swimming around in my mind, I needed to have a few moments to put my thoughts together before spurting it all out. I told her I'd email. I couldn't wait to get home to draft my ideas into an email.
I shared these same words I share with you today about what it feels like to lose a child and how finding anything that can give comfort feels like an army of love has helped you to find an unimaginable battle. I knew Carrie and her family could understand. I sent the email and hoped they'd think my ask was as valuable of a wish as I did.
It wasn't more than an hour after I sent my email and I'm sure only a few minutes after the Faulkner's read the email that I got a text saying they completely supported the idea and wanted to help us make it happen. It was for me, a sign that we were meant to make this happen.
Campbell and his family are truly some of the most generous, giving and loving families I've ever met. Campbell took this cause under his wing and while I was setting a goal of fundraising over the next few years to make it a reality, Campbell had a different idea. Over the next few months at the different events Campbell spoke at he talked about his activities of giving hope and included in that was the hope to give through a gift of a Cuddle Cot.
I'll never forget the phone call when Carrie called and with tears on her end of the phone she said, "We've raised the money, you got your Cuddle Cot." I broke down. I couldn't find the words. It was incredible. All I could say was wow and thank you. While I pray there are never anymore families that go through what so much already have, I knew that reality was not to be and I cried tears thinking perhaps we can give some peace and take away some of the hurt by giving this gift. We cried together on the phone and in that moment our heart strings grew closer together. Carrie always says, "You have my heart." and in that moment I knew truly what she meant. She too, they all, had mine.
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So it is with great heart-giving hope that we share with you one of our biggest announcements of Noah's Kindness Project. This coming October 6th, thanks to Campbell's Crew Cares and his generous donors, we will be donating the first Cuddle Cot to Banner Desert's NICU. We will present it to the hospital on Noah's Kindness Project day.
This is an effort so close to my heart because I know how crumbled a mother's and father's heart is after the loss of her child. I pray that comfort can be found through this gift and that healing can begin even earlier because more time was given to be able to say goodbye.
Campbell's Crew Cares has made it a goal along with our help of Noah's Kindness Project to raise the funds to be able to give another Cuddle Cot for the next 5 years. This is where we ask for your help. We ask you to consider giving to Campbell's Crew Cares, an amazing non-profit charity, all started by the wishes of 12-year-old Chief Inspiration Officer Campbell, to give more hope in this sometimes hope-strained world. Campbell uses the funds raised to spread hope in many different ways. I encourage you to visit his website to see https://www.campbellscrew.com/. Including in the way of supporting Noah's Kindness Project and our desire to give Cuddle Cots.
To donate to Campbell's Crew Cares and our Cuddle Cot mission, please visit his website and click the donate link. You can specifically request that the funds go toward the
Cuddle Cot.
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In the quiet few minutes we got to spend with Noah saying our goodbyes, I wishing for his heart to beat, his lungs to breath and his body to have had the strength to keep fighting for more time. Time. The time we so often take for granted, the years that fly by, the decades we blink and are gone. It is time we never got but so longed to have.
For families enduring the hardest loss, the gift of time is priceless. The gift of saying a true goodbye and creating final memories cannot hold a price tag. I speak from my deepest moments of grief when I say, without them, it is impossible to be able to carry on. Thank you for considering your support of this important gift and for helping us give hope, give love, give kindness and give time.
Until next time,
Angie and Jarrett
