Moriah was born January 23, 2008. We knew she was going to be born with a heart defect, and the NICU team was there, ready to intubate her.
Soon after her open heart surgery at 5 days old, we learned that she had something called CHARGE Syndrome, a rare and medically-complex syndrome.
From day one, life with Moriah was BOTH challenging, scary, difficult AND incredibly rich, inspiring, profound.
Moriah had several challenges with eating, breathing, hearing, learning, and physically moving. As her mom, I looked past all the cords and tubes coming out of her. I looked past all the diagnoses that were being given to me on a daily basis. And I looked right into the eyes of my precious daughter, who I loved with my whole heart…the beautiful soul who God blessed me with.
She was so full of life and love. I was both smitten and scared of all the medical needs and unknowns…and clung to God, which is the only thing I knew how to do. I felt God carrying both me and Moriah through all of it.
After a life-saving open-heart surgery at 10 months old, we navigated living in the hospital for one year, and a sub-acute facility for another year. And as Moriah grew stronger, we could see her spunky personality come through.
We noticed she had her own way of communicating if you took time to watch her, and learn her movements. When we were finally able to take her home, we couldn’t wait…even though she was coming home with a trach and ventilator, oxygen, feeding tubes and pumps, medicines, therapy equipment, and a team of home Nurses!
Moriah finally started getting strong enough to regularly go out into the world (she was rather immune-compromised), and she began attending school with her Nurse. Moriah absolutely loved it, and loved being with friends. She enjoyed playing, singing songs, and learned to walk with a walker to her favorite destination, the garden. Her face would absolutely light up doing these things! She loved being out and about, and around other children. We went on to have more kids of our own, Jadon and Olivia, and they became some of Moriah’s best friends. They loved each other, and had a special sibling bond.
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.
Moriah passed away on December 1, 2014 with me and Justin by her side. Her body became too tired to fight. 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 I was never really aware of until I had her. My eyes were opened to the incredible determination and vibrancy that Moriah and her friends lived each day with, despite the many challenges they faced. They were so strong and brave. I was not only humbled, but inspired.
I wrote this on the one year anniversary of her passing.
“Today I stop everything, and remember my sweet, precious Moriah. From the moment she was born, she taught me about love. She taught me 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 in 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…to look into someone’s eyes, and see that they are beautiful, and see their value. Her spirit was unbreakable. Her joy was contagious. Her faith was immeasurable. I thank God everyday for her, my blessing, my gift. I am honored to be her mother. And thanks to a good and faithful God, I have the peace of knowing that I will see her again…”
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