‘You can do it. You’re Norah’s mom after all.’ Our future changed. The weight of the day was so heavy.’: Mom honors late daughter with nonprofit, ‘Where there’s grief, there’s hope’

“I’ve heard it before, and maybe even said it, but it’s true. Your body and heart remember so much, even if it slips past your mind.

I woke up a few days ago feeling the extra weight of grief and I couldn’t figure out why. What was the trigger? Sadness and longing are now a constant buzzing in my heart, so what was new? I eased into my morning with my phone and there I found my answer. Four years ago, on July 17, I found out I was pregnant with our Norah.

We had tried for five years and the tests in the past had all come up negative, so I didn’t get my hopes up over a late period that day. Everyone in my family said to take the test… I was annoyed. We had given up trying months ago so pregnancy tests were a thing of the past, but I took one anyway. When I got the first positive, I couldn’t believe it. I, of course, took three more. I remember coming out of the bathroom and saying, ‘If these are all false positives, I’m going to be mad at you all!’ I was shocked. I didn’t get the cute tell-your-husband story or tearful moment. Ours was filled with excitement, but also disbelief and fear it might not be real. Eight months later, Norah Cole Fregoso was born. She was real.

I would be lying if I said July 17 was easy or a ‘normal grief day,’ if there is such a thing. It wasn’t. The hopes and the future I had planned for us as a family changed.

I have been blessed in my life. I met my husband as a teen back in 2006 and we married a year after our high school graduation. It’s been eight years of marriage and he continues to make me laugh and gets under my skin like only he can. Every crazy thought, dream, or wish I’ve ever shared with him has always been met with support and now his powerful words of encouragement: ‘You can do it. You’re Norah’s mom after all.’

Norah’s life was just as unbelievably wonderful and unexpected as the day we found out I was pregnant with her.

Diagnoses like level three brain bleeding, hyper insulin, cerebral palsy, strokes, moyamoya, and hypertrophic cardiomyopathy all came trickling into our world, but that didn’t stop us. Hospital living and doctor offices became our new normal. For us, together was home. We made chairs, cots, and window ledges our beds. At night, hospital halls became so quiet. The weight of the day sometimes felt so heavy and overwhelming.

In Norah’s two and a half years, we saw and learned so much. We never knew about all the lifesaving meds or operations these heroes in lab coats and scrubs have up their sleeves. Love, prayers, and her medical team helped us keep our girl for more days. We were gifted with more time.

She was so much more than all her diagnoses. She was silly, sassy, cuddly, and smart. We experienced holidays, birthdays, baseball games, cabin life, and so much more. Every moment of her life was filled with a love we will forever and always cherish. There was love before she was born, while she was here, and even after. That is what I want people to see. To see beyond the thick medical fog.

Norah was amazing and had so much magic and wonder about her. Even with her last moment here on earth, she was able to give us all one last gift, showing her true strength and love for us. She gave us a bit more time. She held on and stayed with us long enough to be surrounded by her whole family. It was then, in a peaceful and quiet room filled with her family, and in my arms, we all saw a warrior rest.

After her passing, my husband and I felt… homeless. She was our home. Our world went gray and cold. But we weren’t alone. Our family and friends were right by our side, showing up in more ways than I could ever have imagined, giving us so much support and love. Truly, my list could go on and on about our beloved support team, so I will just say thank you, you know who you are. We couldn’t have done it without you all.

After her service, we left our life for a month, looking for all the shattered pieces. It wasn’t easy but ten months later, we have picked up the pieces of our hearts and work every single day to put them back together and keep our promise to our girl. So many children like Norah are in the hospitals fighting their own battles for health and happiness. Families, right where we were, helping their warriors recover by their bedsides, loving them fiercely. Our hearts still roam the hospital halls, reside in each hospital room, praying and hoping alongside them.

Starting our nonprofit was never a question of ‘will we?’ but a question of ‘when?’ We knew right away that we wanted to honor and celebrate the journey we had with our rare love bug, Norah Cole Fregoso. In April, we became official and by May, we sent out our first Care Package.

Reaching out to these amazing children and their supporters, hearing their stories, and witnessing their strength has been inspiring to say the least. Our mission became clear, bring light into the hospital nights. We want to bring comfort and a bit of fun to their hospital rooms and even after when they go home. Being able to spread this small amount of joy in the form of a Care Package has been such a blessing in our lives. Having people know Norah and see her light shining is more than we could ever have asked for. She was and she is.

To your reader, wherever you are in life, you are not alone. The world can seem big and distant, but you matter. At your job, in your home, or in a hospital bed, you can make a difference. Where there is grief, sadness, illness, or anger, there is hope. There is a light, no matter how small or dim, and that is what we must all fight to make brighter. What we all need. So shine your light dear one, the world is waiting.”

This story was submitted to Love What Matters by Miranda M. Fregoso, Executive Director of Under The Norah Lights. You can follow their journey on Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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