The On Coming Alive Project: Stories of rising from the ashes and coming alive...

15 February 2016

The On Coming Alive project: Stories of rising from the ashes and coming alive.
I am honored to have recently been asked by Lexi Behrndt- writer at Scribbles and Crumbs - to be a part of a special project - to share my story- my deepest moments of grief- but also the moments in which have helped heal me. Along with 70+ other grieving parents and families, our hope with this project is to shed light on our pain and grief, but also share the ways in which we have started to heal- how we have started to come alive again...


Hayden’s life earth-side was short but impactful nonetheless. After five painful, yet empowering hours of labor, he entered this world screaming like any seemingly healthy pink baby does. As highly requested to the doctors, he was placed on my chest for but a mere 60 seconds. And although I am forever grateful for that minute, I didn’t need that time with him to fall in love- I knew well before he was even born that I loved him more than I loved myself.
Hayden was prenatally diagnosed with HLHS (Hypoplastic Left Heart Syndrome), a heart condition in which the left side of his heart does not fully develop. He was projected to undergo three open heart surgeries within the first three years of life to reconstruct his imperfect heart. Little did we know at the time that it was through Hayden’s journey with an imperfect heart that the world around us learned what perfect, unconditional love is all about.
Hayden lived and fought for five months and four days, almost always with a smile upon his face. His death was a tragic, unexpected accident in the medical world, and when he left to be with Jesus, I knew life on earth would never be the same for me again. I feared with every bone in my body that I would never come out of this depression, that my body would always physically ache for him, and that I would forever be broken beyond repair. Losing a child is a pain no one can describe and only those who are in it can understand.
For what felt like forever, my body ached daily, and sometimes still does, for that five-month-old baby to occupy his spot on my chest and snuggle in for a nice, quiet nap. The first year without him was gruelingly painful. I lost who I was. I lived for my oldest son, Jackson and thought often of what my purpose would be on this earth if he had not existed. I aimlessly walked around my fairly quiet house trying to find my purpose again. I wanted to go in a closet with Jackson and my husband, Rob and hide from the world. I wanted to wallow in my sorrows and stay in the fetal position until it was my turn to go and welcomed the day when I would get to see Hayden again. But for Jackson, Rob, and Hayden’s memory, I didn’t go into that closet. I tried with every bit of energy I had to put one foot in front of the other. I kept telling myself to just ‘fake it till you make it.’ I still, on occasion, took Jackson on play dates, went out to dinner with friends, chatted with friends on the phone, FaceTimed with family, all the while not knowing who I was or where I fit in, like an alien forced to function on this earth.
Two months after Hayden died we founded Hayden’s Heart, an organization designed to honor and remember Hayden, help heart families through their financial struggles, and raise awareness for CHD. The amount of times I was told how amazing I was for doing this, how strong, I can’t even begin to count. Only to a select few would I reveal my secrets. I’m not doing this because I am amazing or strong. I am doing this because I am selfish. Because if I don’t do this, I don’t know what else I will do. I needed something to bury myself in and something that would help distract the pain in my chest without him here.
I didn’t start this foundation for anyone but Hayden and myself. And I made sure it served its purpose and kept me busy. With the close of each event, I would develop a new one. And then I had my first rainbow, Hudson, who will forever be known to me as my angel on this earth who saved me. And life in general got busier and fuller. And soon I wasn’t doing Hayden’s Heart to keep me busy; my kids did that. I was doing it because I loved what it was doing for others. I loved what Hayden was doing for others, what Hayden’s legacy had become. And then it didn’t take long for me to realize that my chest wasn’t hurting every day, that my broken heart was starting to heal. That I wasn’t just existing anymore; I was surviving and thriving. Helping other heart families in his name was healing me and was healing our heartbroken family. I started using the word ‘blessed’ again and really truly felt it. ‘Grieving and grateful’ often came to mind.
I am now three and a half years into my new life, my life as a grieving mother of four incredible boys, three in my arms, one in my dreams. All have my heart. It has felt like a roller coaster, and I assume it will always feel that way at times, but I’m okay with that. I wouldn’t want it to be all or nothing. Feeling pain from his loss is normal and so is smiling. At this point in my life, I am more than surviving. I am thriving. I am alive again. I may not be the same person I was three and a half years ago, and I may never be her again, but I survived the greatest loss known to man, and I live to tell about it.
After three and a half years of the deepest pain I have ever felt, I am coming alive again. I go on play dates with my kids and don’t leave crying. I have dinner with friends and most times feel at peace with being in their company. I laugh and smile A LOT. And yes, I still cry a lot too, and I still have very dark, sad moments and days, but the recovery happens faster and the good days outweigh the bad.
Hayden’s life was glorious. His death was a tragedy, but what he left behind is something so grand, so great, and lately I find focusing on what good his life has brought comes with ease. His purpose is becoming crystal clear. To our family, he brought two rainbow babies that have in turn brought us so much joy, laughter and smiles, and I could not be more grateful. And because of his legacy, we are able to make an impact on many heart families around the world. We are able to provide support and comfort to those so desperately in need. Beyond that, we also provide a platform for others outside of the heart community to support and donate to. Numerous times our supporters have thanked us for allowing them the opportunity to do good for others and have mentioned how in doing so, they too, feel good.
I look at my life and will always see Hayden’s death as my tragedy, but will forever see his existence and what he left behind as a true blessing. And as much as I’d always choose him over the good his life has brought to this world, I am blessed and proud beyond words that he is mine, and that I am his.
Finding myself again after losing Hayden took a lot of time, inner strength, and patience, but it was so worth the wait. I never dreamed I’d be where I am today. There is no denying I miss him with every breath, that I would give every limb on my body to have him back, but I have chosen to enjoy this life as much as I can, not only for Hayden and his three beautiful brothers, but also for me.

3.12.12 - 8.16.12

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