What Do You Say When it Hurts to Say Anything?

I haven’t found the energy to write in days. Longer, it seems. Everything breaks my heart. Everything hurts. Home, work, dinner out with friends…everything. I cry everywhere at everything. Tears sit on the rims of my eyes all day long and they ache and burn from trying to hold it in by the time I’m able to fall into the door at home at night. We collapse in a heap for about an hour, standing in quiet desperation, searching for her, searching for what to do, how to be. How to BREATHE. We pull ourselves together long enough to eat and crash into bed, once again fighting back the nighttime heartbreak and tears knowing that we await the nightmare to begin again when the sun rises and brings us into a new day without our girl.

There have been many moments of peace. So many moments of knowing that she’s with us and that she is perfectly healed and happy. But many more of WHY. Why did this happen and how? I am wracked with doubt and guilt and pain and sorrow and it feels like I’m drowning in what will forever be a flood of grief. Someone recently said to me, “we have been frozen in Kate time. A huge part of each of us wants to stay there.” That just made me catch my breath. This so accurately puts into words how we feel. Frozen in time and afraid to move forward. Every day farther from that fateful morning feels like a decade. It is unimaginable to me how much time has already passed; how long it has been since I got to hold her and kiss her and hear her voice. I am frozen in Kate time, too. Missing her desperately.

Much as I try not to, I spend my days wracking my brain to remember our last exchange of words. What did we talk about that Monday morning before clinic? Did we snuggle? Did I kiss her more than normal? I knew she felt worse. I knew it was a matter of hours before we received the news I had already prepared myself to hear, never imagining the twist the day would take.

I spend my time trying to figure whether she knew we were there with her on the oncology floor and then in the PICU. We had a stack of books ready to read to her overnight that night…and had her white noise sounds set and ready to play for her while she was intubated, keeping her company until she woke up. Did she feel us kissing her, tickling her feet, stroking her hair? Did she watch me climb in bed with her after she left? Was she there then?

As much as I believe my baby is in heaven and the most beautiful angel the skies have ever seen, I struggle with holding onto that. I don’t doubt, but I do question. Did she know she was sick? Does she understand now something that we don’t yet? Was she scared when we were in the hospital? Every time Kate was ever in the hospital, through surgeries and treatment, I was in bed with her. Not just in the room – but in bed with her, with her on my lap or laying just beside me. I was wheeled to every procedure cradling her in my arms. But this time, I only got to take the ride with her. Did I only just imagine her saying “I love you mommy” just before I had to leave her there? I didn’t get to stay with her – i didn’t get to be in bed with her and hold her while the horrible things happened to her while we watched. I wasn’t there holding her she took her last breath. Instead I sat outside of the room and cried for her and shouted for her to stay with me. Could she hear that? Did she know I was there?

I worry that she is upset with me over the fact that she relapsed at all. Did I miss a dose that caused it? Give her too much food when she wasn’t supposed to eat on the 6mp chemo? Could I have saved her if I took her to the doctor earlier when my suspicions of her relapse surfaced? What could I have done differently so that she would be here now with me?

Guilt and grief and sadness overwhelm me. It is remarkable that I sleep, but I do. I sleep because it’s the only place I don’t feel pain. It’s the only place I am free to dream of her in all of her perfect light. Here, on earth, there is no more.

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