I was 20 weeks pregnant with our third son when our world was shattered with a prenatal diagnosis of Spina Bifida (specifically myelomeningocele- he was born with an open hole in his back), Hydrocephalus, and Chiari II Malformation of the brain.
Life further took a turn for the worse just two weeks later when he went into respiratory failure and spent the next thirty days fighting for his life.
Over two months later, our son came home with a tracheostomy tube in his throat to help him breathe, a feeding tube to keep him alive, and on a ventilator 24/7. Along side, this was home care nurses.
Through the years our son didn’t fit in the box of Spina Bifida and instead was medically fragile and complex. By the time he was 12 he had over 50 surgeries.
A few months after an inpatient hospital stay, I found myself crumbling under the weight of grief, even though it had been a few weeks since the stay. It was then that God revealed to me that I was grieving and as long as I was caring for my son, I would be living in a grieving cycle: anger, denial, fear, grief, sadness, and acceptance. This wasn’t as a result of the loss of my child, but the loss of a dream of having a healthy, able-bodied child.
I realized that I had a choice in the middle of all of this – I could choose to just survive or thrive and I could choose joy or anger. The only way to do this is through the power of the Holy Spirit and trusting the One, who is the source of my joy even in pain.
I immediately began writing, mourning, and started a caring bridge site to update friends and family every time our son went into the hospital. It helped me process, grieve, and also see the ways God was working and providing. Then I began to volunteer at our local children’s hospital speaking/sharing our story, started a support group for other parents with medically complex kids.
Digging my roots deep into the God’s hope, sharing our story, and connecting with others has become a place of healing for me. It can do that for you too!