I Miss Her

I dream about her. Her beautiful hair flying in all directions as she runs. Her bright smile beaming at me and her sister. Her legs carrying her as fast as they allow. There's no shakiness, weakness, nor uncertainty. She's just free.

I miss her. I miss her shouting, "Mommy, higher!" on the swings and running circles around me. I miss her volunteering to get things with ease. I miss hugging her without fear of hurting her. I miss her pulling Selah in the wagon. I miss how busy she was all day long. I miss her running ahead and waiting for me. I long for her contagious giggles because she knows she can't be caught by anyone. This confidence and fearlessness I miss. These days, I can't get over the fact that it'll be a long time before she is back to this girl. Every playground is a reminder of what was, as are kids running at church and school and the grocery store and the library and the mall and...

It's become a tradition for Big S and Little S to sing and dance for me on a self-made stage at every playground we visited. I must have the same song recorded a dozen times at different places with different outfits. My girl is so happy and carefree in these videos. What I wouldn't give to have that back. I know I can't trade places with her, but I would. I would give my arms, legs, eyes, anything to have my daughter be free of this cancer. As a parent, some basic principles are that you want your kids to be healthy, happy, normal. I want her to be healthy, but now we have to worry for the rest of her life whether the cancer will come back and what side effects will surface from the treatments--and there will be many. Is she happy? I don't know. She's become more emotional and easily upset and frustrated. Normal? I don't even have to see people staring at her, I feel it. Everywhere we go. I just want to scream she has cancer, she is NOT a freak. 

From the beginning, I enforced a rule that no one is allowed to cry in front of Sophie. She is not to think that she did something wrong and I don't want her upset seeing others cry. But I've broken that rule a couple times now and it's harder not to do so. Each time she lays her hand on me and I know she understands why I'm crying. Last week, I kept telling her that I'm so sorry she has to go through this, I'm sorry that she has all these owwies in her body as I rocked her in my lap. But she's getting medicine to get rid of everything and we are praying that she feels better soon. I tell her everyone is praying for her and I list the people by name. Because that helps me too. To know we are not alone in this fight and that people do care and love our family.

Jason and I know we have to adjust our expectations for what kind of life Sophie will have in the future. Learning disabilities, hearing loss, attention issues, endocrine issues, obesity, special education classes, etc. are all real possibilities for her after this year is over. There's something like 27 "later effects" as well. People keep telling me that it's our "new normal." I just want to say, I love Oprah, but this phrase is such a disservice to families who suffer. This is definitely a new situation and direction that we have to go through, but never is it going to be normal. It's not normal that a 4 year old girl has cancer and has to undergo radiation and chemo treatments. It's not normal that the same girl loses weight and doesn't want to eat. And it's not normal that she loses her hair in 2 days and then has to hear comments about it from others. She's no longer running and walking or chasing her sister like before. Again, the norm is none of those things.

A friend emailed a parent's job description recently based on a book called Grace-Based Parenting. According to the author, it's not the parent's job just to clothe, nurture a child, or make them happy, secure, successful, athletic, popular, or the like. But for those parents who love the Lord, it's to teach them how to love Jesus and to love and help people. I agree with these points. Sophie's character, her true worth, will not come from what this cancer is doing to her body. It will come from what Jesus says--He is with her, she is made in His image, He will never leave her or forsake her, He protects her, He loves her, nothing can separate her from His love. Nothing.