Hospice – what a scary word- so many fears and stigmas. A service for children many can’t fathom. I, myself, couldn’t either.
I never imagined my firstborn daughter, would die before me. However, on a beautiful Sunday evening in November, she did. She was in the most loving, peaceful environment—her home. My daughter Veda was ushered into heaven surrounded by the love of her family and the sweet care of her hospice nurses Stephanie Brister and Greg Tisdale.
At 22 weeks gestation, Veda Julietta Garner was diagnosed with multiple congenital heart defects. During her first year of life, she had four open-heart surgeries and many other life-saving procedures. Despite her disease, Veda exuded happiness and had a wisdom that was far beyond her years. She had the calmest demeanor and the most peaceful spirit. She was simply beautiful.
I still remember the first day her nurse Stephanie stepped in Veda’s room to assess her. She looked at me and said,“I feel as though I’m on Holy Ground with that one.” I just laughed and said, “I know. It’s wild isn’t it?”
It’s hard to explain. The sheer amount of joy she radiated is unlike anything I’ve seen. I know I’m biased, but the word “joy” would be a word used to describe her time and time again. Veda came on hospice just six months before she passed away from congestive heart failure. Six months doesn’t seem like much, but to a parent with a child who has a life-threatening illness, time is all too precious — no matter how much.
It was a devastating blow when I realized Veda was not getting better and our time with her was limited. I felt immense pain for obvious reasons but also hurt just as much for the different generations of my family, those like my parents and grandparents, great aunts and cousins. There is something so very difficult about breaking the natural order of things, and the death of a child is horrible and unthinkable and, quite frankly, not how “it’s supposed to be.” Conversations like that are heartbreaking for everyone, and this is where hospice initially helped so much. They really broke down the barriers for us to have a very hard, but real, conversation about Veda’s diagnosis and what life here until then would look like. Hospice helped us put time in perspective; it showed us we had not lost hope, but we could hope in something different instead. Maybe not hoping for a cure but for good days, fewer appointments and hospital visits, and more time with family. I hoped and prayed for not just more time (quantity) but also quality in our time, and hospice really helped us live in the moment.
I wanted everyone to be aware of how she was doing so that they could spend this time, all that was left, to love on her — their way. We had some of our best days while on service with Hospice Ministries. Veda loved spending time with her grandparents, going grocery shopping, and browsing the candle section at Home Goods. She went on night trips to the neighborhood pool, and friends even rented her a princess bouncy castle one Friday.
Veda lived life and with the support from hospice, we lived those six months well. As the months passed, the team at Hospice Ministries became family. We shared a common goal, and as we grew closer, our love and care for Veda intensified in the most beautiful way. I’m not saying there weren’t really tough days because there were gut-wrenching, hard days. On November 15, 2015, the worst day of my life was experienced, but even still, we were supported and never alone. Even to this day, they still support us by remembering and honoring her by speaking her name.
The greatest gift that hospice gave to me was during Veda’s last moments. It was the ability to be able to just be “mom.”
I had been so unsure about what my role would look like. I had been all the things, all the time, but, for once, I was able to be all-present and all-mommy. I was able to just sing to her, hold and kiss her, and give her all the love I could in those moments. I was a mom and no one else. That gift will take me into eternity and is something I’m forever grateful. I don’t know how I would have done it without the love and support of her nurses Mrs. Stephanie and Mr. Greg and the incredible staff that loved her from a distance. Our social worker Donna, the bereavement department, and so many more played such an instrumental part of our story. They each helped guide us with grace through the most agonizing moments of our lives for nearly four years. They have remained a constant, loving presence in our lives, and I am so very thankful for that.