Well it's been two weeks now, Monday was anyhow... My mom's off all medical support including oxygen and has been enjoying true wireless freedom now for a little over 24 hours... It's funny you know.... She was afraid to take it off... thought she would be in a panic for breath... I can't begin to imagine what that all must have felt like. Being sick...
Just before the call, my mother's lung capacity was estimated between 16 to 25 percent... That's not a lot of lung capacity, each breath was a severe struggle. She was getting one infection after another and it was starting to really look like the end of the line. I remember a week prior to the call she had the meropenum antibiotics via a portable battery powered pump that she was carrying around. And like a trooper she tried to go to the physio therapy room. We parked in the garage and she said, take me to the washroom I have to go before we get upstairs... So to the door we went... There was a bit of a cafuffle and I had a feeling something had gone wrong in there although each time I called into the bathroom... Are you ok? I heard a reply that was barely audible and broken up between gasps of air... "Yeah, i ahhhhh just .... i'll be....... ....... .... ok... " at that point when a lady opened the door for her and she was hanging on to the wheel chair as if it were her only hope I knew that we were in trouble... So instead of the physio room I brought her to the Emergency where she spent several hours and at the end of it all they said there really isn't much more they can do she's already on meropenum and isn't in immediate danger...
So a day later we ended up at the good Respirologist's office looking for some dire help... He is an honest man who has really carried her through all of this since she arrived in Ontario. He has prescribed meds, and therapys that have worked miracles as far as bringing her back to her baseline... He rushed her off to the hospital directly from his office once and even had pre arranged to have us admitted so we did not have to wait when we arrived. But that day... The day we begged for help from him he hung his head down and shook it saying there isn't anything more he can do.. We just have to wait for the call... It was really hard to deal with. I choked back my emotions and didn't for one second show my mother it bothered me. Instead I smiled at her and said "Bahhhh.. don't you worry, the call is coming"
I knew though, my mother was afraid... and as much as I tried to put on my poker face she saw right through it and knew I was afraid too...
So now that that phase is over... we walk the halls each day, meeting up with various people we have met through the program. Some are having a really tough time, one who we knew quite well is not expected to make it after fighting in MSICU for over 8 weeks... His wife, trying to be strong told me this in the elevator just after I broke the news to her that my mom is going home on Wednesday...
After an awkward silence all I could think of saying is, I'm so sorry...
During some of the physio visits we joked and laughed about when the call would come in and how we would react etc.... None of it was true, not a single emotion stood up to it's plan. The entire journey was not at all like we expected.
I wonder sometimes, how other friends are doing. We have not heard from them in over a week. I heard rumors that he was back in physio but I have not caught up with them yet to speak to them...
Today, in the halls I met with the spiritual councellor in the hospital. He was putting up some St Patricks day decorations and as always I joked and made comments on the lighter side... I asked him to come speak with us sometime and told him we are here until Wednesday... Like a man of God should he was enthusiastic about it and told me he is looking forward to our chat. I am not looking for religious guidance but rather advice on how to put our emotions and thanks for the donor family into words. Words that will honor... I somehow have this sense that no matter what we say, what we write down... It will never be quite right, it will not portray what we need to say...
I rationalize what happened to the donor, saying to myself that they would have died no matter what my mother's health was like. I remind myself that in Canada this is a gift, a gift from the donor and their family... And that gifts, must be honored... And in this case the only way I can think of to say that it will be in honor is to remind ourselves that we have a duty to keep her healthy for as long as possible. The gift will live on for as long as we can possibly let it live on and in doing so, I pray they will have peace...
I know, that as I ramble on here my jumbled words can not assemble themselves without some guidance... I am throwing away gramatic license and trading it in for real emotional thought. I care little about the way the sentences are strewn together, I only care to share with you my emotions about it all... To let you see a little about what makes us tick as a family... I intend to work on a project, some kind of project for which the details have not quite come to me yet. I believe in doing this I can get some closure to all this and move on... Until then... I sit.... I mull... and I pray for the family of the Donor... whoever he/she may be...
I ride the roller coaster of life with nothing but a smile on my face and hugs for my kids...
I think this may be enough... I am quite sure actually!
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