‘Our son’s entire 18 hours and 16 minutes of life, he was never alone. He was fiercely loved, deeply cherished, and widely celebrated.’: Mom turns loss of son’s ‘fleeting life’ to Trisomy 18 into ‘something of value’

“When I found out I was pregnant in April of 2017, I was terrified. But even in the midst of my fears, I knew this is also what it felt like when your dreams come true. I knew in my heart that since God decided motherhood was ready for me, that I could trust in him to make me ready for motherhood. I saw an array of possibilities to make it all work out and I envisioned the greatest adventure for my son and I. We were going to travel, tackle, and triumph over every inch of this world.

The pregnancy wasn’t unlike others. I had morning sickness and lots of it, and almost as soon as that faded away, even the thought of any food or drink gave me heartburn. And then at 20 weeks, everything changed. The pregnancy went from being typical to being the start of a nightmare that even on my best days I feel I’m still stuck in. At 20 weeks we learned that Cole was growth restricted and we would need to see a specialist to find out why he was measuring 2 weeks behind. After many more ultrasounds and few echocardiograms, Cole was diagnosed with congenital heart disease at 25 weeks. And after finally having an amniocentesis completed, we got the diagnosis of Full Trisomy 18 at 30 weeks. We didn’t have too much longer to process the news of a lethal diagnosis before Cole and God decided it was time for us to meet him because just 2 short weeks later, he was here.

Courtesy Natalie Castoreno
Courtesy Natalie Castoreno

Born on October 24, 2017 at 4:04 p.m., he was beautiful, and he was everything I had imagined that love could be. For Cole’s entire 18 hours and 16 minutes of life, he was never alone. He was fiercely loved, deeply cherished, and widely celebrated. Cole taught me more about unconditional love, unrelenting perseverance, and undeterred acceptance in the 8 months I carried him and 18 hours he lived, than in my entire 27 years before him. And as difficult and painful as this road is, I am thankful for the way my life has begun to grow deep roots through this storm. I am thankful that I can stand firmly on the truth of friends’ and family’s love and support despite my circumstances. And I am thankful that I get to call myself Cole’s mom.

Courtesy Natalie Castoreno

I miss my son every day, and I will never stop grieving him. I will never stop posting about him or advocating for him. And I will never stop keeping his memory alive. But I do feel like in the 21 months since I lost him, I’ve gained my life, and my hope back.

Courtesy Natalie Castoreno

This time last year, I was stuck in my grief. I was drinking every day. I didn’t know the top from the bottom, and I was lost in my faith. A year later, I finished my first year of grad school with straight A’s for the year, I was promoted to the Lead at my job, and I am 6 months away from moving away from the only home I’ve ever known in Colorado. My relationship with God is strengthened again after I lost my faith, and my family and friends keep me going everyday throughout my every decision or mistake. I know Cole is with me. I feel more whole now despite a piece of my heart being forever missing than I ever have. And I can say – yes, I carry my grief every day. But it’s changed. I’ve changed. I am at peace again. I know happiness again.

Every decision I have made since I lost Cole has been with him in mind, including going back to school. The decision to apply for entrance and acceptance into a master’s program didn’t come lightly. After 10 years, three different schools, and one Associate’s Degree, I graduated from the University of Colorado Denver in May of 2017 with my Bachelor of Arts degree in Psychology. With my four-year-turned-ten-year degree came a degree of certainty that my time in school was finally complete. After his death and through my grieving process, I thought long and hard about what I wanted or needed to do with my time and with my circumstances. I asked myself one very important question, ‘How can I transform my son’s fleeting life and too-soon death into something of value?’ I realized my hunger for change and growth was now much greater than my former complacency to stay the same. My first year of grad school is finished and I couldn’t be more blessed to have been given the opportunity to go back to school and have a platform to share Cole’s story. In each of my three classes I had the opportunity to share about Cole, his Trisomy 18 diagnosis, the taboo surrounding talking about infant loss, finding @walkwithmedotorg and my tribe of other bereaved parents, and how I’ve navigated the last now-21 months. While I thought I would be teaching my son about the world in my lifetime, I instead get to teach the world about my son; and everyday Cole’s legacy continues to transform and grow into whatever greater purpose we are working towards.

As I reflect on parenting after a loss, it seems obvious that I’ll never know what kind of parent I would have been if Cole had not died. Sometimes I wonder about this, but mostly I simply exist through it. Sometimes I wonder if I’d be less anxious, less fierce, less attached, and not intimately know my son could die. But I am learning to embrace who I am now and ultimately the parent I am/will be when the time comes to raise Cole’s earth-side siblings. I remember writing a year ago how I was certain I would always be broken. There was no way I could feel whole again; no way I could smile or laugh again, and no way I could live the rest of my life without my son. There was no way my body would ever move or feel the same way as it did before the c-section. There was no way I would learn to trust my body again, and no way I could ever trust this world again. Of these things, I was certain. But the broken pieces did start to mend together, with time and with patience. The empty spaces did start to fill up again, now with so much more than ever was there before. Life has found an almost synchronized way of transpiring over the last year. Alternating characters in and out of my life, bringing forth new challenges and blessings, and always keeping me humble and grounded in this purpose that is so much greater than myself. I thought I lost the chance to have a great adventure with Cole when I lost him, but I think our great adventure together is really just beginning.”

Courtesy Natalie Castoreno

This story was submitted to Love What Matters by Natalie Castoreno, 29,  of Englewood, Colorado. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

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