NICU Journey
When Rebekah Del Collo was 28 weeks pregnant, her son, Elias, was born. At only four days old, Rebekah and her husband were woken in the middle of the night to news that Elias was being life flighted to a level 4 NICU. His umbilical catheter had punctuated a vein and he couldn’t breathe on his own.
“Things came crashing down in the middle of the night on day 4 and that was the worst day of my life. That day felt like an out-of-body experience and so did the week that followed,” Rebekah tells Love What Matters about the time in the NICU. “I felt numb and in a fog. My body was shaking uncontrollably and I just wanted to sleep. I kept thinking if I could go to bed, I would wake up to find out this was all a bad dream.”
Because of the injuries he suffered, Elais has Cerebral Palsy and Cortical Visual Impairment. Like many other medical moms, much of Rebekah’s days are spent advocating for him to ensure he can live the best life possible.
“It’s exhausting to constantly have to be advocating for him. We have an incredible therapy and medical team for Elias, but even so, as his mom, so much falls on my shoulders. Being a caregiver to a medically complex kiddo like Elias is a full-time job,” Rebekah says. “Truthfully at times, it feels extremely isolating. While our friends and family members are taking their kids back and forth to sports, school, social activities, and planning summer fun, our days are filled with therapies, doctor visits, phone calls, medications, and feeding schedules.”
Remaining Grateful
Despite the difficulties, Rebekah is thankful for the experiences she has had and the opportunities her son has had. In an Instagram post celebrating his second birthday, Rebekah expresses her gratitude for his life.
“Grateful doesn’t even begin to describe how I feel. To every person who prayed for Elias, from the bottom of my heart, thank you so much,” Rebekah captions her post. “To every single healthcare worker in both of the NICUs and on the life flight that worked with it on Elias, you will never understand what you mean to our family, and the impact your work has had on our life. Thank you a million times. Because of you, we got to celebrate the life of our incredible little Elias today.”
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Beyond the gratitude she feels for her little boy, Rebekah feels that she has become more compassionate, patient, and empathetic in all parts of her life. Seeing Elias in the NICU and learning from the disabled community has broadened her view of the world and given her a community of people and support.
“We don’t want or need Elias to be ‘fixed.’ I want people to know that there is a lot more to life than someone’s IQ or physical abilities. I don’t care if my children are the class valedictorian or if they are the top athlete. I care much more about if they are kind and how they treat the people around them.”
Everything that Rebekah has learned through her experiences has not only helped her, but hopefully can inspire change and support for others. She and her son show that raising disabled children is not bad, but different. Letting go of certain expectations and embracing the journey allows her to be the mom her son needs her to be.
“I want to bring hope and community to parents that are receiving hard news and to know that parenting a disabled child isn’t a ‘bad’ thing or something to be feared,” Rebekah tells Love What Matters. “It’s a different path, and at times it’s a hard path, but hard doesn’t mean bad. There is so much joy ahead, and there is so much beauty in appreciating and celebrating what makes each of us unique.”
This article was written exclusively for Love What Matters by Anna Steingruber. You can follow Rebekah and Elias Del Collo of New Jersey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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