This is something I have been meaning to write about for a while, but I haven't been able to get my words around it clearly. It is such a deep chasm that I often lose myself in it as I try to explain it. It catches me almost daily, just little things, sometimes much bigger, but often the most unsuspecting thing brings it on.
We began the battle for Scarlett's life a year ago, and it has been difficult, to say the least. One year later, I am still grieving. I wake up every day to her beautiful smile and her sweet little voice, but I am still grieving inside. It might be difficult for others to understand, but it is something very real for me.
Sometime early in this journey, during one of the many long and arduous hospital stays, our hospital social worker brought up the idea of our grieving. It didn't sound right - we usually think of grieving death, and Scarlett was very much still with us. But then she explained - we were grieving the loss of the child we had dreamed of. The one we had hoped for and imagined all those years before we had her, while I was pregnant and for those first two unblemished months. We had to grieve the loss of that imaginary child, of the dreams we held for that child.
I know it sounds like we had to give up on her, but it was quite the opposite. We had to give up the illusion and accept her, with all the scars, delays and complications to fully appreciate the triumphs and celebrate her. We had to let go of the fantasy child so that we could fully embrace the one in front of us. Having a child diagnosed with any kind of medical condition or special needs is difficult, and while it does not compare to the death of a child, it still represents a deep loss. While the child is still present to be held, every day is a reminder of an unknown future, continued challenges and pain, and that can bring new waves of grief.
Unfortunately, I have been witness to a lot of grieving lately, and I have seen a whole range of experiences and ways that people handle it. Some grieve very publicly, and want others to join in to help ease the pain; others want to hide and quietly process on their own. I have done both, though I know it seems like this blog has been an all-access pass to our journey. I am working my way through the infamous stages of grief, and while I can pinpoint some events in each category, I don't find that they come in a definitive order.
Denial was a short-lived stage, as we were put face-to-face with the tumor that was overtaking her brain on the first day; I remember a fleeting thought of "Maybe they have the wrong scans!" until I blinked again and could recognizer Scarlett's profile, with her tiny nose and round chin, in the MRI image.
Anger comes and goes. Unfortunately, there is no person or thing to be angry at, so it had been a fruitless emotion. The anger comes in more in the lack of options, the lack of information and the overwhelming number of kids I have met who are also battling this.
Doctors don't bargain much, but I tried my best with God. We asked Him to make this stop, to take this pain away from our innocent child. While some may argue that God brought us to the surgeon who removed the tumor, I have a hard time giving Him credit for that. Ultimately, I don't feel I had much to bargain with.
Depression ebbs and flows, like the tides. There are good days, where I feel like she is making such great progress and that all of this will be a distant memory that we will tell her about. Other days it sits around me like a thick, soupy fog that I can't see my way through. Luckily, I am pretty good at identifying the bad days and finding ways to combat it, and I almost always have someone or something that can distract me.
We are, and may always be, learning acceptance. We accept that Scarlett will not fit any kind of development schedule or curve. We accept that she will never hear perfectly. We accept that Scarlett will always need some medical interventions, monitoring and even further treatment down the road. I am learning to accept the way people look at her, like they are sad for her, and just a little scared of what might happen if she sneezes too hard.
I will, however, never be able to accept that this happened to her. She did not deserve it. Honestly, I don't think I did either. Nevertheless, I am learning to accept that it was always going to be this way. She was always going to be our daughter, was always going to be a Scarlett, and was always going to be born with brain cancer. There was never a "before", only Scarlett the way she was meant to be.