Written by: Grace Grutter
All my life, I knew I wanted to be a mom. I knew I wanted a large family, and I fell in love with a man who wanted the same. We were blessed to get pregnant with a beautiful boy named, Bowen. Shortly after he turned one, we found out we were expecting again, and were devastated when I lost that pregnancy at six weeks. We were so lucky that we were able to conceive again quickly, and were blessed with a beautiful baby girl, named Nella. I remember coming home from the hospital with her, and wondering if this life was real? If I was really lucky and blessed enough to be coming home with this precious healthy baby girl to my sweet boys? I never took a single second of my motherhood for granted. I knew what a tremendous blessing and joy it was to be one. So many women struggle to grow their family, and I had exactly what my heart had always wanted.
A few short weeks later, I started noticing little things that were off with Nella. She didn’t seem to kick her legs much, and she hated tummy time. I started mentioning these to family and friends, who brushed it off quickly, as Nella looked so healthy. I started to feel crazy, as I knew in my heart something was wrong, but no one seemed to agree. After bringing Nella to her pediatrician at 11 weeks, and crying to him telling him I knew something was wrong, my worst nightmare came true the very next day. She was diagnosed with a terminal genetic disease, Spinal Muscular Atrophy type 1, that would quickly and progressively get worse until it took her life. There was no treatment, and no cure. We had weeks to months left with her. They told us to go home, and love her for the short time we had remaining. Paralyzing and suffocating grief took over our life for the next few weeks. Disbelief, anger, depression. It all came intensely and quickly.
We started a prayers page on Facebook, as a way to update friends and family on what we specifically needed them to pray for. Her prayer page rapidly grew, and was shared many times. Strangers we didn’t know were praying for her, commenting on her pictures, sending us sweet messages to let them know they were thinking of us. Friends and those we haven’t heard from in a very long time brought us dinner. The community in Kansas City rallied alongside us. From Nella’s prayer page, we have met the kindest, most generous people who have the incredibly beautiful hearts.
"We stopped worrying about the insignificant parenting woes, and started to spend our time together “choosing joy.”
Nella didn’t progress as quickly as they predicted. In fact, within days of her diagnosis, she started giggling. While our hearts were aching, hers was not. She felt safe, and secure and knew she was loved fiercely. Her tenacity and spark for life were growing. We realized that we couldn’t let her precious life, no matter how short it may be, be defined by our grief and sadness. We knew we could not control what life had given, and it was up to us choose how to proceed forward. We realized that our time together was a gift. We stopped worrying about the insignificant parenting woes, and started to spend our time together “choosing joy”. We were going to be grateful and find the beauty in everything, even the really, really hard things. We knew we had to make her life nothing but one of joy and love. We couldn’t fall apart, when she desperately need us.
Today, Nella is nearly three, and is growing into the most beautiful and sweet little girl. She loves life, and isn’t phased by having a few extra machines that accompany her at all times. Her mind is blossoming, and she is constantly trying to soak in all the new and stimulating information that she can. She loves and adores princesses, hates bedtime, and laughs at her daddy and brother. She is loved and adored without end, and I still look at her can not believe how I got so lucky that God chose me to be her mama.
It’s not to say that our life isn’t hard, and hasn’t been met with challenges and a few disappointments along the way. We have learned to live with grief and fear as a constant companion, however it now takes a backdrop to the joy and love we feel. Our eyes and hearts have been opened to all of the beauty in life that could otherwise go unnoticed. And our hearts are so grateful and full.