It is amazing how one can take things for granted as I look back at her ordeal. It is a thought that keeps coming back - why did we not spend more time with her? Why did we not do more activities with her? Why did we not show more empathy towards what she was enduring? Its strange how, in the moment, you can get so easily lost with the everyday chores, needs, and desire to get one more thing done instead of using that time to spend with someone in your care who you know, in the back of your mind, that they may pass away soon. I fell into that trap, that zone, that pitfall and I am now left in this human world suffering with my guilt and my pain of not knowing whether Supatra understands or understood that everyday things needed to get done. Can a seven year old who's brain has been scarred and dulled from radiotherapy and drugs understand this? Did she understand that special meals and medicines had to be prepared at regular intervals, that medical logs had to be kept, emails sent everyday to the doctors, and preparations made for our move; just to name a few? Can she forgive me for not being more attentive to what her needs might have been? Supatra was a relatively easy person to care for in that she would say something if she needed help or something brought to her and if not she went about her daily routine of playing with Jason or watching some cartoons if we were not engaged in other activities. But this put us into a routine mode that we think we should have snapped out of as the last few weeks drained her of energy and she became more symptomatic of her disease. We should have grasped the severity of it and changed our daily focus to better accommodate Supatra and spend much more precious time with her. To talk with her more. We should have considered reducing the treatment regimen to allow her body a bit of a recovery. We should not have tried weaning her off the steroids three weeks earlier. All these things are like little slivers of guilt poking at us, deepening our heartache. For me it is a deep remorse for not being a better and more capable father to Supatra - something that keeps my heart from healing even a little and the pain fresh. I still cry a lot. Sometimes it is in the morning when I walk into her room to look around and talk to her as if she was there lying in bed. Other times it comes as I try to organize all our pictures of her on the computer, something we had not done for years. But whenever it does come it rips into me and I become inconsolable in my grief of not being able to hold and feel her in my arms; to not hear her jabbering about silly things; or watch her play and interact with Jason. We just can not come to terms with losing her, something so permanent, final, forever.
Our pain is only interrupted by our need to 'get things done' for our impending move back to Canada this coming week. If it were not for this task I think both me and Punny would be lost to the world only alive just enough to sit and think about our loss. Both of us now want to leave as soon as we can, to leave this house that is now too big for our much smaller family and our hopes to leave some of the memories of Supatra's last few days behind as well. Not the memory of Supatra per say but the memory of watching her die over the last few days of her life and the constant rehashing of events over those days that leaves us wondering 'what if.' Hoping that a change in living space will somehow cure or lesson our pain and open our minds to only the good times and healthy images we have of our daughter.
This past week we took a short 4 day trip to Venice, Italy to try and get away from our pain and hopefully spend some quality time with Jason. Punny had always wanted to visit Venice but we never really had an opportunity and of course when Supatra was diagnosed the idea quickly disappeared as we focused entirely on finding a treatment for Supatra. We probably could have gone before our trip to the Burzynski Clinic but we were also bogged down with the need to find new accommodations and move home because our then landlords decided they wanted to sell their house forcing us to move. After starting the Burzynski treatment there was no way we would be able to go as any flights with Supatra would have meant taking her off the treatment. At first, I did not like the idea as it just did not feel right going on a vacation so soon after Supatra's death. How could we go and try and enjoy ourselves without Supatra as if to say to her spirit; 'finally we can do enjoyable things again without worry or complications?' But in the end it kind of made sense to go and get away from this empty house and the thoughts of her death. So, off we went this last week but unfortunately it did not really help me; I don't know how much it helped Punny but I do know that no matter what we did or what we saw we immediately always thought of Supatra and how much she would have enjoyed being there with us. Supatra loved travelling and going on adventures and Punny had talked to her about Venice in the past so we knew she would have been very excited about this trip. Venice also has lots of fantastic souvenir and art shops that Supatra would have loved brousing through. Buying a Venetian mask maybe? A glass rose? Or some costume jewellry from the many jewellery shops? All would have gotten her extremely excited, made her very happy and I am sure she would have come home with an additional suit case of goodies on our return. Supatra would have loved the Italian ice cream that we had several times each day because of the hot weather, and she would have lapped it up with delightful glee. And so our little escape from our house was constantly interrupted with the thought of how Supatra would have loved to have been there with us and the sadness, guilt, and utter despair remained with us for the entirety of the trip. I am sure if you see our pictures from the trip you will see us smiling but they are only superficial smiles forced for a brief moment in time. Luckily we managed to hide our feelings from Jason and he seemed to really enjoy the trip but we can also see his frustration poking through now and again probably from the growing realisation that he no longer has a sister that he can talk with, play on the DSi with or watch movies on the iPad with - adults are just not the same!
So now comes the next tough job of packing up Supatra's room tomorrow in anticipation of the movers coming on Monday to start packing our belongings. I think many tears will be shed again as they are everyday, tearing down her room and ever so carefully packing up her personal belongings. We intend to box all of the most precious things ourselves as we do not want strangers touching her stuff. Stuff like the last clothing she wore, the pillow she used, the blanket she was wrapped in over the last days, her most precious toys, stuffed animals and her many written notes, journals, and art work. A tough day it will be with many more to follow. I feel weak, exhausted and lifeless as my sadness consumes me from the inside out. If only we could go back in time and correct our faults and mistakes - what a perfect world it would be.
Miss you Supatra....