Last week I mentioned our daughter Sarah Grace who lived for one short month in 2014. As we’ve walked this journey of being parents who have experienced infant loss, there have been new and unexpected challenges. I often describe myself as a reluctant homeschool mom. It wasn’t something I’d always dreamed of doing. But when the time came, we decided it was the best option for our family. Since so much of my attention has been on establishing our Charlotte Mason homeschool this year, as our middle child’s 4th birthday approached, it struck me that I will never be able to homeschool her. I thought it fitting to honor her short life by sharing her story.
Sharing Sarah Grace’s Story
When we found out we were expecting our second child in 2014, we were excited. Things seemed to be going well with the pregnancy, and we began sharing the news with family and friends. Then, during our routine anatomy scan, we learned there were a few abnormalities with our baby girl, and we were referred to a specialist.
The testing the specialist performed revealed that our daughter had a rare, lethal genetic disorder. We weren’t sure whether she would survive the pregnancy or how long she would live when she was born. While we felt devastated, we decided to enjoy whatever time God would grant us with her.
After the diagnosis, we began to prepare for our daughter’s arrival. This was a challenging task. How do you prepare for the unknown?
We also did things that don’t usually go together. We toured the hospital, including the NICU, and had to make decisions about end of life issues. I went to lots of doctor visits and also met with our hospice care team.
We were grateful that our daughter was doing well when she was born and was able to come home with us. For her one month of life, we loved her deeply, and she touched many people during her brief life. Family and friends came to visit and held her. She was baptized.
Around Thanksgiving, our daughter’s health began to decline, and we knew that her time would likely be short. We prepared ourselves as well as we could. When you know someone’s life is ending, it seems like there is never enough time. You always wish for more. We had another two weeks with her before she went to be with the Lord.
Sharing Our Memories
If our daughter had lived, she would be 4 years old this week. Every year her birthday is a bittersweet day. We take time to celebrate her life and the time we had with her. We talk about her with our children and show them pictures of her. We remind them of her story and say her name. We want them to know her.
Losing a child is a hard thing. It changes you, and never “get over it.” You can’t replace the child who died even if you have 100 more children. Each year you think about the milestones your child would have achieved, mourning what could have been. And while I don’t mourn like those who have no hope (1 Thess 4:13-14), I long to hold my daughter once again. But until that day, I find comfort in the hope of the resurrection.
I’m sure some of you have walked through miscarriage and infant loss. You know what I’m talking about because you’ve experienced it too. Even though it is such a hard thing to share, we can honor the children we won’t homeschool by sharing their stories. If you have a story to share, I would love to hear from you. Feel free to email me at hello(at)amblesidetales.com