A little boy just died. We are tempted to use other words, make it easier to hear. Passed away, left this world, became an angel. But it all means the same thing. He got sick and two days later was gone. I’m told that in many ways, he was stronger than Sami. He was less affected, less fragile. And yet. And yet.
There was a recent online conversation that caught my attention. A mom was told there would be no Make a Wish trip, because her child “Only” had CMV. Only. What a word. Yes, I do understand. Many children are born asymptomatic, or only mildly affected. CMV alone doesn’t guarantee a life limiting condition to most.
But to some, to those of us who deal daily with the affects of CMV, that word “only” is a nasty word. Most days, I find that we live the life we have adapted to, and don’t even notice the changes. Someone asked me the other day what the hardest part of my day was, and I really couldn’t think of anything. Every day follows the same pattern and it’s just our life. We do it and don’t even think about it.
Some days, though, some nights like tonight, the “only” comes back to haunt me. Only CMV. Only seizures and spasms. Only two tubes hooked up to Sami’s stomach 20 hours a day, only special formula and meds four times a day. Only special chairs and walkers and car seats and offloading and position changing. Only AFO’s and body jackets and hand splints and glasses. Only putting the cochlear on 4000 times a day, wondering if it really makes any difference.Only listening to every breath, waiting for that different sound that means something is wrong. Only wondering, every day, who is next to lose the battle, and when it will be our turn. Harsh words, I know. True, honest words.
God is the blessed bringer of peace. He is, after all, the Prince of Peace, and He promises us peace that passes our understanding. With peace, comes more “only” things. Things that only CMV has brought into our lives. That smile that lights up the whole room, every morning, when Sami sees each of her loved ones for the first time that day. That way she has of communicating that has every jumping to her every whim, and being absolutely delighted to do it. That demanding yell she gets when someone is wearing a hat and she wants it. That way she uses her whole body to “help” when she watches football and basketball. That way her siblings have of completely melting whenever they see her. That way complete strangers fall in love at the sight of her face. That way she laughs at each bath time, like it’s the best part of her day, and screams at me because she’s cold afterwards. That way that she giggles when I lay down with her and grabs my hand to fall asleep. And that way that her little foot reaches out at night, to make sure I’m still next to her. I treasure each of these things in my heart.
A mother lost her son tonight. I can only imagine her pain, and I pray that God gives her that peace that passes understanding. I am sure that she has her own treasures stored up in her heart, of all of the things that CMV brought in to her life, and for that I am thankful. But I am ever more aware that, good and bad, it will never be “only CMV” to us.