My name is Shelby, and I’m a mom without a child.
My two-year-old daughter, Sophie was diagnosed with Stage 4 T-Cell Lymphoblastic Lymphoma in May 2017. We had 12 weeks of her responding well to treatment when she unexpectedly had a MASSIVE relapse in August. Our doctors had never seen a child relapse so soon in 40-plus years of practicing.
We were in the club that even cancer families don’t want to be in, the “rare disease” club.
We spent nine days in the ICU getting 15 doses of adult “rescue chemo” that saved her life and knocked her into remission but, it came with huge neurological consequences. Sophie began slowly declining and losing her independence. By the end of August she could no longer sit up, walk, talk, eat, play, use her hands, or do anything at all on cue. She basically ended up with the horrific side effects that 1% of patients end up with. She was truly unique, the ONLY child living in America with relapsed T-Cell and severe neurological deficiencies.
We started physical, occupational, and speech therapy trying to get her strong enough for our only shot, a stem cell transplant, but her tiny body just couldn’t handle it. On December 22, 2017 we were told the devastating news that her Lymphoma had again relapsed and was invading the left ventricle of her heart. She neurologically couldn’t handle any more chemo and we were out of medical options. At that time, we decided to withdraw palliative chemo and let her spend what time she had left without poison consuming her body. We spent 13 days singing, holding her, watching movies, and being together before she passed away in our arms on January 4, 2018 at 2:11 p.m.
Ever since that day, I have been dreading the question. The question I know I will eventually get asked when I go out and meet someone who doesn’t know my story. The question that I fear will knock me completely to my knees and shoot me back into that hospital room. What question is that?
So, do you have any children?
I know as soon as I say something like “Well, I have a daughter in heaven,” I’ll get the pity look and the awkwardness that comes with being different. People don’t know how to respond to that. I saw it for nearly eight months when I’d tell people my child had cancer and was in the hospital. People don’t know how to respond to open grief and that’s OK. I can’t fault anyone for that, but the thought of answering that question fills me with so much fear and anxiety. I am a mom. I carried a baby for 38 weeks, labored her into this world for 13 hours, and spent two years and nine months with her, but I don’t have any children here on earth with me. I don’t spend my days at play dates, changing diapers, cleaning up toys, or making snacks. Instead I spend my days with my face buried in her hospital suitcase trying to find her smell.
Then, my God whispers, “Trust me with this.”
The question is just another unknown in this life. I have no idea when I’ll get asked but, I know what my answer will be and I know that no matter what, He is here for me. He is big enough to handle my grief and my fear. I can’t keep fear of a question from letting me go out and live my life. In fearing the question, I’m actually just afraid of facing more instances where I’m reminded of her absence. When in fact, nothing extra can remind me that she’s gone. I feel it all day, everyday and a stranger’s question doesn’t have the power to make or break me. I think fearing that question is just another way the enemy is trying to manipulate me into thinking God isn’t big enough to help me through this. He wants me to be too afraid to share my pain that I clam up and fall apart or even lie to avoid feeling uncomfortable. We are called to be overcomers of fear, to call on the name of Jesus when we feel weak and let him strengthen us with the truth of who is.
Psalm 145: 18-19 says “The Lord is near to all who call on him, to all who call on him in truth. He fulfills the desires of those who fear him, he hears their cry and saves them.”
I’m still Sophie’s mom. I’m still here even though she isn’t. It would be insulting to the eight-month-long war she waged against cancer if I stay in fear of a question instead of using that question to share her story. So, maybe instead of dreading the question and seeing it as a source of grief, I should look forward to it. Maybe I should go out seeking people to share her story with. It won’t be easy. Nothing about this is easy. She was brave and I can be too because the Lord is my stronghold and I would miss so much by not sharing just how much he has done for me.
The Lord is my light and my salvation—whom shall I fear? (Psalm 27:1)