It has been 110 days since Kate had a bone marrow transplant. 110 days since we jumped off that cliff with Kate in our arms.
It’s been 16 weeks since my 10-year-old son bravely walked to the OR to give his bone marrow to his sister.
To Hope to curb the disease that we were told she would die from.
It’s been a little over 4 months in hospital for Kate…for our entire family. Watching the bravest, most stoic and loving child endure what would reduce most of us to tears. To watch her suffer. To watch her smile. To see the recognition in her eyes that she knows she has no choice. To know that who she is, the life she has had, the choices we’ve had to make for her, the challenges she has had to face are beyond anything anyone could ever have imagined or what many can understand.
How do I express my feelings after 4 months of this. Of watching this. Of knowing what I know. Of living what we have lived. Of feeling what I have felt and continue to feel.
Of interrupting her life and of being terrified I won’t be able to get her back to it.
My greatest fear was disrupting the life she had. And she did have a life. It wasn’t easy. Despite the smiles on our faces to mask the daily pain and challenges, it wasn’t easy. It has been 8 years of not easy. But it was her life and she was living it and making the best of it and we were (so far) keeping her safe and the monsters at bay.
…now there is uncertainty again. Where there was confidence in managing her disease, there is fear of her recovering from this. Where there was excitement, there is a sense of loss for her – time at school, time with friends, time with family, time in the water, time spent outdoors at parks – on bikes – running. Where there was a sense of Kate being happy, I’m now not sure.
The day-to-day fatigue dealing with chronic illness and developmental challenges has been replaced by profound exhaustion. Endless nights on the hospital room cot, sitting by her bedside crying over her small frail body and wondering “what have we done”, moments of hope for recovery that slide back into complications and fear for her life. Grief. Loss. Sadness. Fear. The emotions mix in a melting pot of pit of the stomach sickness.
You try to hold onto Hope. Because Hope is real and it is powerful. But you are the mom and the dad and you are responsible and Hope gets overshadowed by Fear. And it’s a dance between the two. And you want Hope to win and you want to understand Fear and accept it, to not let it take over and it is an exhausting day-to-day struggle. And you feel worn out. And you feel annoyed at constant reminders to “stay strong” “be positive”. You want her back. You want another chance at the decision to do this. And you can’t. There is nothing to do but go forward.
I try to remember who this is about. This is happening to Kate. It is her life so severely and terrifyingly interrupted. But as much as it is about Kate and has always been. It is about Jack and Brian and Julie and our family. Being scared for them, for us…for myself and how we will come through this.
It has been 7 years and 9 months of facing down the SIFD monster. A monster that had no name. A monster we fought to name. A monster we had come to understand and had learned to live with, but a monster we were told time and again had surprises for Kate. Nasty – life limiting – surprises.
I know she is strong and she is incredibly resilient, and I’m jealous of the kids who go home. Who suffer less. I am jealous of the kids playing in the park and crying over scraped knees.
I am amazed that she still smiles and giggles. That she still belly laughs at silly antics and strives to make friends with anyone she meets. That she loves her nurses and trusts her doctors. Where does that LIGHT come from? How can there be that much strength and will and love and FIGHT in such a tiny little girl?
This has been her life and we’ve brought it to some sort of crazy junction of Hope that she will get better and live an easier life, or Regret that we have chosen poorly and we have hurt her beyond repair.
Which is it?
I think she lives the Hope and I feel the waves of Regret.
The answer isn’t clear yet and it will be many more weeks and months in hospital and delicately stepping through this new existence of the post-BMT world before we know.
We are relearning her disease and what we have transformed it into by doing THIS. The doctors don’t even know. I think deep down we knew it would be up to us again to forge the path and guide them, lead them, help them navigate Kate. I don’t think they realized that Kate would have the lead. I bristle at the work I have to do to get them to listen, to engage, to discuss and debate and understand that WE, Kate and I, know this best. That we have the lead and they need to listen, support and follow. So I step back and start to build the relationships Kate needs to be safe. It’s not easy.
It’s not Fair. It’s hard. It’s exhausting.
It is what it is.
Put one foot in front of other. Take one more step forward. Ignore the pain and heartache. Wait for the good moments. Try to pain attention to them and enjoy them. Get through the bad. Try to recognize the Good and the Bad.
Try to live our best life. Despite.
Try to help her live her best life. And Jack.
How did we get here?
I just want her to be well.