Harder than my reality… is their reality.

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Today was a good day, Sophie is doing well and is the healthiest she has been in a very long time. We have bad days but recently they have been easier to control having all of her medication right here without having to wait for doctors appointments when there is a flare up. I feel like her doctor sometimes, I am definitely her nurse.

Somehow today though two of my kids brought up death. My teen son while out with me running a few errands brought up the subject and I don’t even remember how it started. We began discussing the natural process of being born, growing older and dying. Then it became a conversation about how our lives are not guaranteed and how unfair life is.

And then somehow the conversation shifted to Sophie, and I began to speak to him about how every moment with her is precious and that we must remember just how fragile her life is. We talked about the severity of her diagnosis and the reality that one day her lungs will cease to function and we will have to let her go. The tears flowed so painfully. He asked me not to talk anymore and we rode the rest of the way without speaking, just shedding tears and supporting that beautiful love we share for our girl.

A couple of hours later while hanging out with my younger son he began asking me questions about why we die, he is eight years old. It was odd, neither of them had been together nor discussed anything. I found myself again explaining the cycle of life and I made the difficult decision to talk about what the future holds for his sister. That was HARDER because he is so young and because I had to relive that so soon, again!

I explained to him that his sister has a disease that has no cure and that one day her body will get so sick that it will not be able to work and her body will pass away. I told him her soul will always be with God and when that happens she will then be watching over us but that all the love and memories will always live on through us.

He hugged me and cried. He told me he didn’t want his sister to die. He then went off to pray and told me secretly that he asked God to help doctors find a cure to her disease so Sophie could live a long life, like him. He came to me two other times throughout the evening to hug me and tell me he won’t stop praying for God to make her healthy. Each time I felt like I was withering a little more inside.

The thought of having to let my daughter go is so hard, but watching my children absorb the reality that their sister will one day be gone leaves me speechless. I don’t even know how to describe the heartache that watching their pain brings.

I had not even begun to deal with talking to the kids about this devastating truth but somehow it felt like the right time. My heart hurts, there is this deep heaviness that grows within me each day and it lingers in the depths of my soul just building. I know that one day it will become so heavy that it will debilitate me but I still try to live each day to the fullest regardless.

Each day Sophie learns something new, each day we watch her flourish more and more and her father and I enjoy every moment of her beautiful life. And in between those beautiful moments there are those moments that our eyes meet and the sorrow of what will come comes through without having to say a word, as if our souls know the magnitude of the loss we will have to fight to overcome.

Often we forget about the siblings. They suffer a tremendous loss and suffer in silence because it doesn’t seem a great as the loss of a parent but the reality is their love is powerful, their loss is just as great and we must do our best to prepare them, to support them and help them understand.

It doesn’t make sense, this beautiful child continues to defy the odds, she has become so much more than what doctors ever expected of her and yet each day her body is fighting an arranged fight. She fights to remain alive while her body fights to shut itself down. The doctors tell us they don’t understand how she is still alive but I can tell you why, her soul and will to live are powerful. She will not give up her fight until it’s time to go home and rest and until that moment arrives we will continue to fight for her and with her.

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