b”I married my high school sweetheart, Justin, when I was 21. I was so in love and ready to take on the world with him, considering we had known each other since we were 12, dated since 10th grade, and made it through college without breaking up! Plus, we had our faith — I thought we were ready for anything. We had our first child, Moriah, at 23, and while we were at what was supposed to be an exciting anatomy scan to find out the sex of our baby, we were told the devastating news that our baby had something wrong with its heart. Oh, and it was a girl, who we would later name Moriah.
From the moment our precious baby Moriah was born, she was intubated and placed on a ventilator, immediately fighting for her life. At a few days old, she went in for a heart catheterization where cardiologists determined Moriah had a very complex heart defect, and she would need surgery within the next week of her life. I remember I wanted to just take her and put her back in my tummy, where she would be safe again, and not have to go through any surgeries. While in the parent’s waiting room, we saw a father run out into the hallway of the cardiovascular intensive care unit, fall to his knees, and start crying because his child had died. We realized how close death felt for all of us parents there. I tried to be what I thought was ‘strong,’ but I finally found myself bawling on the shower floor asking God: ‘Why? Why Moriah? Why us? Why heart surgery?’ It was too much. She was so little. How could God let this happen? Until I felt like I ‘heard’ God tell me in my spirit that ‘this would all be for a purpose.’ I literally picked myself up, said ‘okay,’ and I didn’t ever question ‘why?’ again.
After Moriah recovered from her first open-heart surgery, she went from the CVICU to the NICU due to feeding complications, and it was there where she was diagnosed with a rare, medically-complex syndrome called CHARGE. Each time, my heart sank with the doctors’ somber looks, their whispers as they tried to figure out what was going on, and all the new medical terminology. I just kept looking past all the cords and tubes coming out of Moriah, all the diagnoses that were being given to us on a daily basis, and I looked right into my baby’s eyes… the beautiful soul who would look right back at me with her big, sparkly brown eyes, and I knew I had to keep going because she kept going! Of course, I was scared of all the medical needs and unknowns, feeling so ill-equipped to handle it at 23 years old, but Justin and I continued to be on our knees praying since it was the only thing we knew we could do. I pictured God walking with me, holding my hand through all of it, carrying me on the days my body was traumatized from yet another code blue, infection, or a long night of comforting Moriah through her cyclic vomiting episode. It was always something, but Moriah pulled through every time.
We went from: ‘You need to take her home and let her heart give out. Her heart is too complex’ to ‘surgery was 12 hours, but her heart is now fully repaired, and her toes and fingers are pink.’ From ‘she’s going septic and she has a 50% chance of living’ to ‘her numbers are stabilizing and she will pull through.’ From ‘she is failing extubation, and she needs a tracheostomy’ to ‘she is doing well with her trach and respiratory rehabilitation.’ It was up and down, down and up, and we continued to just put one foot in front of the other, following Moriah’s lead. Our motto was not ‘one day at a time, ‘ but rather moment by moment’ to get through it whenever it felt too overwhelming.
Moriah showed us how to persevere with smiles and laughter even though circumstances were difficult. We forced ourselves to find joy in the little moments. We played pranks on Justin with the Nurses by filling a syringe with chocolate pudding and squeezing it on him when he held Moriah to make it look like she went to the bathroom on him — his reaction was priceless. We made up silly songs for Moriah where Justin may have worn a Boppy pillow over his head and danced like Barney — and Moriah loved it. We had to choose joy in the midst of living in the hospital and all the trauma or else we would have just cried. Our families were also there to support us every step of the way. Since Justin and I grew up together, our families were close, and we all just held onto one another, lifting each other up.
We survived two very long and arduous years in the hospital — one year in the ICU and one year in a sub-acute facility — and we finally went home when Moriah was 2 years old. We learned to navigate a new life with her now that she had a tracheostomy, ventilator, gastrostomy tube, oxygen, medical/adaptive equipment, and nurses who lived in our home to help us take care of her. It was the tiniest apartment stuffed to the brim with all her medical supplies, but it felt like a palace to me after living in the hospital and Ronald McDonald House for so long. Moriah finally started getting strong enough to go out into the world, and she began attending school with her Nurse Sharon — she absolutely loved it, and loved being with friends! Justin and I went on to have more children, Jadon and Olivia, and they became some of Moriah’s best friends. They loved each other, and had a special sibling bond (and rivalry when it came to them trying to take her Yo Gabba Gabba and Sesame Street toys)!
When Moriah was just shy of turning 7 years old, she got an infection. I thought it was just like all the other infections, and that she would fight it as she usually did. But this time, the infection went to her heart, and she had to be hospitalized. On December 1, 2014, Moriah’s heart started to lose function. They attempted to put her on ECMO, but couldn’t even find access into her legs with all the scar tissue that had built up over the years. We knew there was nothing left to do, and we just lay over her crying and told her it was okay to go. Her body became too tired to fight, and she finally passed away. At the moment that her soul left her body, so did pieces of our hearts. We were utterly and completely broken. Even though it was a day we knew would come eventually given that Moriah’s life was a gift from day one, we could have never prepared to see our daughter die right before our very eyes. I couldn’t believe we were leaving the hospital knowing Moriah would never come home with us again.
There’s not a day that goes by that I don’t think of her, and miss her. We all do. She brought us into a world that we were never really aware of until we had her. She taught us about love. She taught us not only how to love her, but to love others. Justin and I couldn’t help but look beyond ourselves, into the world she brought us. Whether it was the friend at the bedside next to her, her Nurse, her Doctor, her Therapist… she showed us how to see beyond the surface. Moriah taught us that there was so much more beyond words, beyond looks, beyond what is ‘normal,’ beyond what is expected, beyond what is in our control.
She showed us how to love well, and how to love deeply… how to look into someone’s eyes and see that they are beautiful, and see their value, or even see their pain.
While we saw so much goodness that came from people during our time with Moriah, we saw that there was still room to grow as a society in the way we see and value people with disabilities. I saw that not everyone saw Moriah for who she was, nor valued her the way she should have been. She was often stared at or ignored when we would go out in public. Because she looked different, I was asked: ‘What’s wrong with her?’ (In front of her, might I add). Because I knew of her heart defect in utero, I was asked ‘why didn’t you abort her?’ When I questioned why there weren’t certain medical programs available for kids like Moriah, I was told that people would rather put the money towards children who didn’t have such severe disabilities. While we were in the sub-acute facility, we saw how little support and acknowledgment she and the children received from the world around them, although they were located in one of the wealthiest cities of the country — Silicon Valley. Also, growing up in an Indian, South Asian culture, I saw the shame and stigma that surrounded having a child with a disability, knowing families who would hide loved ones as if they didn’t exist (thankfully I had a family who loved Moriah wholeheartedly, and treated her no different than any other child).
Because of everything we learned from her, our lives started taking a different direction after she died. I wrote two inclusive children’s books called ‘Hiya Moriah’ and ‘I Am Me from A-Z.’ I want to create spaces where Moriah’s friends can see themselves and their experiences represented and I want to encourage children to wave and say ‘hiya’ to boys and girls like Moriah instead of just staring or ignoring people who are different than them. Through my series, Moriah & Friends, my hope is to raise awareness, acceptance, and representation for children with disabilities.
For Justin, he could never shake that moment from the beginning of our journey when we saw the father run into the hallway after his child died, crying on the floor. Justin, being a person of faith, remembers telling God at that moment: ‘If anyone really needs you, it’s now.’ This was a defining moment that led Justin to quit his job as a top account executive in Silicon Valley to attend seminary and become a chaplain who ministers to families in the hospital. Justin has begun his work at the height of COVID, and while it has been extremely intense, it’s exactly where he feels called to be.
As a couple, we’ve learned to go with the twists and turns that life has taken us on, especially when we found out that we were pregnant again after Justin got a vasectomy following Moriah’s passing. We didn’t want to open our hearts to any more children because of all the pain we experienced — plus, three c-sections were enough for me! However, God once again had different plans, and we had a baby boy named Shane. Shane has brought so much joy and healing to our lives, and he even has so many of Moriah’s mannerisms and quirks. Just this past year, Shane was diagnosed with Autism Spectrum Disorder, and instead of it being a shock, it has felt like a blessing, and even like a familiarity that we once had that had now returned., something that I don’t think we would’ve had the eyes or heart to see without our moments with Moriah. She shaped our lives, and even though it wasn’t the journey that I expected to take when Justin and I first got married, there’s no other person I’d rather be doing this with than him. And now, when we are working on some of the same therapies and games with Shane that we once did with Moriah, I can just imagine her looking down from Heaven, smiling, and saying ‘Hiya’ to all of us.”
This story was submitted to Love What Matters by Victoria Nelson from Phoenix, Arizona. You can follow their journey on Instagram, her series Instagram page “Moriah and Friends,” and her website. 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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