Previously posted on Caring Bridge
Today is a really shitty day.
I have been having flashbacks to when Sloane was in the hospital and all of the procedures she had to endure. MRIs, CT scans, NJ tube placements, suctioning, ventilator, nasal cannulas, arterial lines, PICC lines, chemo port, IV lines, hourly finger sticks, hourly neurological checks, 2 brain surgeries, 2 EVD placements, chemo drugs so toxic that they had to hyper-hydrate her so it would damage her internal organs and that isn’t everything. I just think about how scared she must have been. How she didn’t understand what was going on. Why we couldn’t hold her all the time because of all the lines and tubes and why her body wasn’t working the way it was supposed to. Her brain was thinking clearly and she had so much she wanted to say but that damn tumor kept her body from doing what she wanted it to do. I start to wonder if it was all worth it. It was worth it for us because we didn’t want to lose her, but were we wrong in being selfish and putting her through all of it? We just miss her so much. Pictures are hard to look at because we long to hold her. Videos make us ache for the sound of her voice and her outstretched arms for us to pick her up. This is the face of a grieving mother. This is the face of someone in so much pain from taking a breathe without her daughter. This is what you don’t see. You see us being strong for Cora and Quinn. You see us living life. You see what we want you to see. The reality is though that this is how we feel inside every single second of every single day. The world keeps moving forward around us and we are stuck in a place with no end. We will forever be grieving for Sloane. There is no light at the end of this tunnel. No matter what we do in her name, no matter how much money we raise for Pediatric Chordoma research, we will never be done grieving. It will always feel this way inside. We will just learn to live with it and grow around it. It is hard to see everyone moving on as if nothing happened, but that is because nothing happened to them. It happened to us. It happened to a little girl who was as pure as sunshine and didn’t deserve to die from a one in a million tumor. I was supposed to be with her right now. I was supposed to be playing with her at the hospital and finishing up our last round of chemo. Instead I sit alone, keeping myself busy or punishing myself for not doing more. For not being able to save her. Today is a really shitty day.