I said I wasn’t going to write, but it’s always been what I do when I feel broken. To be honest, I don’t even know what I’m supposed to write about. Everything else has been updates about plans moving forward, but now there’s nothing. No plans, no miraculous cures, and no hiding from the fact that in days or weeks, we will have to say goodbye to our baby.
I’ve written a few times before about how I didn’t know if I’d be planning a birthday or a funeral this year, and look how it’s come full circle. 3 weeks before our baby turns 10, and all I find myself doing is thinking of the best ways to make her days precious and bearable, before I have to think about the latter. I find myself adding songs she loves to a playlist labelled “funeral” and each time it brings me to tears.
Grief and bereavement are a very funny thing. Sometimes I’m okay, but other times I can’t stop the tears from flowing and racking my body with sobs. It was never meant to end like this, not when she fought so hard, and I can’t let go of the anger. Back in January I had convinced myself that it was the end, that we should start preparing for the worst, only for Aurora to do a complete 360 and surprise everyone with complete remission.
I let my guard down. I wanted to believe everything was working, and now everything is as bad as it’s ever been and I’ve let myself fall from a height.
Initially when Aurora started complaining of pains and aches, it was put down to engraftment, but gradually the got worse. After the MRI, we continued the treatment for infections, all the while disease was plaguing her body, which meant all the antibiotics and antifungals in the world were going to do nothing to alleviate the symptoms. This wasn’t infection, this was disease, and I know better than anyone how aggressive and fast Aurora’s is. It spreads like wildfire, once it’s there, it’s everywhere.
In the week between her first and second MRI, aurora’s disease has progressed from one side of her brain stem, to surrounding it completely, along with her spine. When we first found out we were told she may have weeks or months, but we know all too well how quickly things change.
After the bone marrow and the MRI confirmed how far spread it was weeks and months turned to days and weeks. We were told that she is deteriorating extremely quickly and that based on her symptoms, there will likely be a sudden event. A major seizure, or stopping breathing, and that’s when you have to make the hard decisions.
With a heavy heart yesterday we agreed to a do not resuscitate order. Although it pains me to say it, I want her to let go now. She’s fought for so long, and she’s in so much pain, I don’t want to delay the inevitable. I don’t want her to suffer because I’m not ready to let go, I’ll never be ready. She’s been my driving motivation since the minute she was born and this isn’t right. It doesn’t make sense. It wasn’t supposed to happen like this.
People are confused and rightly so, but I’m not. I knew going into this that there was a 90% chance of it coming back within a year, and no matter how many people told me to be optimistic, I never was. I always aired on the side of caution because we’ve been dealt this blow time and time again. Every single time I think we’re getting somewhere my heart gets torn out and ripped into pieces again.
I wanted to tell her, I wanted to be honest, but now I can’t bring myself to allow her to wake up every single day thinking it might be her last. I want her to be comfortable and happy, not weeping over something we cannot change. If I could change it I would, I’d swap places with her in a heartbeat so that she could grow up and be healthy and happy.
I can’t believe I’m not going to watch her grow up. My baby will be forever that, and I’ll have to go on every day pretending like I’m fine but I won’t be. I know I won’t. I want to go back to when we were happy and all of my babies were healthy. I’m not just losing my daughter, my babies are losing their sister. Their big sister that they love so much isn’t going to be there to watch them grow up either. It’s not fair and I don’t think I’ll ever be at peace. I’ll be happy she isn’t suffering, but I’ll have to keep on going knowing that I am suffering without her.
We have made the decision to bring Aurora home on Monday so her remaining days or weeks are spent in familiar surroundings with her parents and her siblings. This week has taken its toll on her body, and I want people to remember her the way they last saw her. Happy and not in pain. We will navigate through the hard times until she is at peace and we can finally grieve with everyone we love.
I’m so sorry that everything we did wasn’t enough. I’m sorry that so many people are about to lose someone they treasure. But mostly I’m sorry that this world has been so cruel.
Growing Pains and Paper Planes 