I married my high school sweetheart Justin at age of 21 i was too young and deeply in love. At age of 23 Moriah’s anatomy scan we learned she had a serious heart condition.
Moriah was born very sick and had to fight for her life. She needed heart surgery as a newborn baby. Later, she was diagnosed with a rare syndrome called charge. It was overwhelming and scary for us as a young parent. Her courage and our faith helped us keep going through everything happening and we never lose hope.
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 extubating, 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 taught us to find joy even in hard times with her and laugher we learned on humour family support and each other to survive hospital life after two long year she finally came home with medical equipment and amazing nurses. She grew stronger went to school and became a loving big sister to Jadon and Olivia.
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 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.
She showed us how to love well, and how to love deeply… how to investigate 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 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
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.
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. Moriah changed our lives and I’m thankful to share it with Justin now with Shane, I feel Moriah’s smile watching over us.
