Last Friday the chief of Rehab visited Mark, and in my absence, asked him if he wanted to go home. Of course, anyone who has been in hospital for over two weeks aches for home, so of course he said "Yes". Was that all that was spoken at his bedside? I will never know. Was it clearly explained to Mark that going home now would mean being "bed bound" and he would basically be sent home to die as he will never recover? I don't know and Mark can't remember the conversation, which makes me wonder if there even was one. All he remembers is some doctor asking if he wanted to go home.
I was furious to say the least and I soon tracked down this person and asked the meaning of question. I was advised that Mark's condition had deteriorated further and that rehab would be a waste of time and resources for a person who is unlikely to make any progress. Keeping my despair under control, the hospital social worker quickly jumped in and said, "Let's have another meeting to discuss where we go from here" and the arrangements were made for Monday at noon...TODAY!
So I had the whole weekend to wait and stew over this meeting, knowing that yet again, Mark would be left in his hospital bed without any exercise, movement or even sitting up in a chair. Physio had promised two sessions per day in the hospital ward and that indeed happened on ONE day, then one session the next, then nothing. The hospital ward is not the place to try to rehabilitate someone and resources are stretched way too thin. It's an impossible task.
Thankfully Sebastian was looking forward to a wonderful weekend with one of my many Guardian Angels and after seeing his Dad on Saturday morning, he happily went off for his weekend adventure, leaving me at home to try to catch up on hours and hours of study. Another one of my Guardian Angels also came to the rescue to help me to give Mark some physio therapy over the weekend. If the professionals were not going to do it, then me and my Angels would. So on both days, Mark had three sessions of exercises in bed plus two times of sitting up on the side of the bed, supporting his body and practicing sitting up straight.
After spending as many hours as I could studying, with only an apple for lunch, I decided to have an early dinner. As luck had it, I had some left overs in the fridge. While heating it up I had the idea to have dinner with Mark as I knew that he would be having his dinner delivered about now. With no need for a baby sitter, I packed up my dinner and some special treats and headed for the hospital. Together Mark and I ate our dinners and chatted, then put on a movie through his "Telstra Bedside Movie on Demand" system. It was a lovely evening and having the ability to close the door of his private room and just be together was priceless.
The following morning, I decided to make pancakes and also bring them in to the hospital. Sunday morning pancakes is a tradition in our household and it seemed pointless to make pancakes for one, so I grabbed the picnic basket, and loaded it up with freshly made paleo pancakes, coconut yoghurt and fresh berries - the taste of home. Mark's eyes lit up and together we enjoyed our pancakes and another special moment together, as well as a shave and some more physio work. Once satisfied that I had completely worn him out, I headed home to cram in more study before Sebastian would return home that afternoon.
I have lost count of how many nights I have gone without sleep. Even sleeping tablets, which I have never taken in my life, are having little effect. Mark's fate was now in my hands. At Noon today, I was to state our case as to why Mark deserved to go to rehab. Another Guardian Angel was at my side today. She supported me, held my hand and gave me strength as I sat at the head of the table and gave my speech-the speech I had been rehearsing for days and nights. My hands shook and my voice began quivering, but then I found my inner strength and I stated the facts about what had occurred over the past 15 days. The entire time I spoke, every person in the room (around 8 or 9) had their eyes firmly planted on me and my speech, all except the head of rehab, who bowed his head the entire time, until it was his time to speak. It was most nerve racking and as he spoke, he stated his case as to why Mark should go home. I held my breath and held my Angel's hand, thinking, "This is it, he is going to refuse him". I did my best to keep all emotions in check and stick to factual information, again adding more information into the discussion. Eventually, after a one hour meeting and input from others in the room (Palliative Care, Physio, Social Worker), the Chief of Rehab, reluctantly accepted him and began making arrangements for a bed for him in the Rehab ward.
Everyone left the room with the exception of my friend, the social worker and the Pal Care Worker, and when the door finally closed, I burst in to tears. I was congratulated on my hard work and dedication to Mark, but it did not feel like a win to me. I had to fight too hard and there is now so much pressure for Mark to show some improvements. Parting words from Rehab where, "it is unlikely that we will see any improvements at all. If so, we would have already seen some improvements by now. No I don't feel victorious, just exhausted. I went to give Mark the good news, took one look at him and as he smiled at me (something he doesn't do much these days), I sobbed and sobbed and hugged him so tight. "You're in" is all I could get out, "You're in". I held his face in my hands and looked him in the eyes as tears streamed down his face. "I hope there happy tears?" I asked. "Yes" he replied "Thank you so much". We hugged and I sobbed some more, before pulling myself together and turning into a sergeant major.
Time for your workout, and off we went, exercising in bed and sitting up on the side of the bed, in full knowledge that it would be unlikely now that he would receive any more physio while on the ward. Picking up Sebastian after school, we called in to the hospital for one more physio session before heading home and giving Sebastian some quality time with his Mum.
I have been commended for my dedication and been told I am an inspiration and while I am truly touched by these comments, I also feel a little confused. Mark is "the one". He is my true love, my soul mate, my world. Yes I have Sebastian of course and he is the other part of my world, but we are a trio. Our love for each other is infinity. I can't imagine doing anything else but fight for the rights of the man that changed everything for me. No other person on this earth understands me like he does. He loved me at my worst and admires me at my best. I constantly say and do things that offend or upset people, but never with the intention of hurting anyone. I would do anything for anyone that I care about, but I am often misunderstood. My mother shares the same fate, always giving herself to others, but often misunderstood because of bad delivery. So I guess it's genetic.So now we wait for Mark to be transferred which, I am told, will take a day or two. Tomorrow is College for me, but first I must see the Osteopath to unlock the muscles in my shoulder. I cannot give Mark much physio tomorrow, nor will I be able to spend as much time with him as I normally do, as I feel I am failing my Pharmacology subject and missing just one lecture would surely seal that fail. One day at a time is all I can do, just one day at a time, one foot in front of the other.
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