Hello ....
Well ... yesterday I thought I made a post, I know I had this big long list of complications and the digestive system ... upon logging on here, I see it didn't get posted ..... hmmmmmm ..... I will say only one thing, it was either due to Maggie interruption, or I just completely forgot to hit post. Now, if that indicates to you what sort of day I had yesterday ...... run with it!!!
Yesterday was a roller coaster of emotions for me. I was and am not prepared to deal with the wide range of emotions flowing at the moment. Yesterday marked the one year anniversary of my mother's service, and I actually spoke at this event. On top of that it was Veteran's Day, I always get a tad sappy at this mile marker anyway, to remember all who have served, those family members I have who continue to serve, and where we might be, or what language might be the prominent one of the day, if not for these individuals.
That being said, I was off from work yesterday (I hate days off in the middle of the week as I thought today was Monday all over again). I had a fairly mellow morning, cleaning up, collecting crap for the yard sale, dancing with Maggie ... LOL ..... she is part of my family .... and she is a good dancer for a lil'one!! :D Hillary had classes yesterday and was home about noon'ish when we went back into town to pick up some food. Prior to that ride, my mom had been weighing heavy on my heart and mind, I miss that woman so much that words cannot begin to describe my void. Some people often thought that our relationship was too close. I don't believe that, I believe and wish that every woman could have the sort of relationship I had with my mother. It was as a card I gave her once said, "Ours is a strange and wonderful relationship, You're strange, and I'm wonderful!" Oh how we laughed at that one ..... and so many other things in life that it made those few rough, rocky patches seem like a small speed bump!! My missing her went deep yesterday, as I had mentioned before, I have not had a really knee dropping cry since she left this earth.
Well .... it hit yesterday. At approximately 3:15 pm Arizona time yesterday my cell phone rang. Not sure why I answered it as I didn't recognize the number. On the other end of the phone was the nursing coordinator for the transplant team. I must have sounded odd as she asked me if I was alright, I said yes. She continued to tell me that yes, it was a holiday, but she had gone into the office to do some things while it was quiet. She wanted to let me know that her fax apparently had lots of paperwork, documentation on it with my name on it. ..... (my gut became a little more queasy), she wanted to let me know that all my paperwork had now been received, and that the "Team meets on Wednesdays to review the cases up for transplant (Now I can feel not only my gut ready to blow, but my knees have become shaky). She continues to tell me that I will be reviewed on Wednesday and a decision will be made as to a final decision as to whether I will be a good candidate. She proceeds with "I think you are and excellent candidate!" (I thought I was going to pass out!!!! It was like reality had hit me from behind all in a 6 hour period. She told me that I should be hearing about my "Virgin Trip" to SF for all the typing and cross matching tests (a 3-4 day trip). Then it will be ........ WAIT ...... for a suitable donor.
I have so many questions .... when I hung up the phone I went to my knees. One, cause I wished my mother could be here to share this with me. I know she would be excited. She used to say she would "never see a cure in her lifetime" and she didn't. I didn't really expect research to come this far either in the time I have been following the research (over 20 years). You always hear about these remarkable new advances ..... but they neglect to tell us that they are in monkeys or rats, and it could be YEARS .... before they ever get to be used or tried on a human being. Hillary came running across the house as at this point she can hear me bawling like a baby ....a teething baby..... God I was wailing !!! It was like a sea of emotions, built up for so long, hit me.
To add to that, this afternoon a reporter from the hometown newspaper came by the clinic to do a photo op and a few questions with Hillary, myself, and my "support team", and my new fill-in family. It is to print in next Wednesdays paper. I guess what struck me as odd this afternoon was when the woman asked me if I was afraid to die. I answered calmly, and with conviction that I have already hung out on the door step a few times and No, I am not afraid to die, I am afraid of the mess I will leave behind. She seemed shocked to hear my answer. Not 15 minutes earlier I had been on the edge of tears telling Hilly and my coworkers I wasn't sure I could do this, (the publicity stuff). Yes, I want to share my story, I want awareness to be known, I want change, I want a better future for kids diagnosed today, that they not have to go through childhood, adolescents, young adulthood with such a stigma. I was not contagious then, I am not contagious now, and no kid should have to cope with such harsh realities.
Okay .... so we all have the big picture now ??? I am on the cusp of a potentially new future for myself..... and with hope for a real cure for the kids of tomorrow. When I asked Hillary after the interview was over what she thought about that comment (death) ... she looked at me and asked "it is a reality mom, did you not think of it?" To answer her question, I did think about it. It is a fact .... I weighed both the risks I am dealing with now, with the risks of the transplant, matched with the benefits of living as I am, knowing full well I could drop to a critically low blood sugar and NOT wake up ..... I have been so incredibly lucky in the sense that someone always picks up on my "stupidity" as we have dubbed the episodes. I am all too aware of the potential of failure with the transplant, but it is a risk I am willing to take and even if it should fail with me (an option I refuse to look at as I don't like to be that negative) I am helping research take the next step. Surely, that must be worth something ?????
I don't consider myself a very religious person, I do, however, have some deep seeded faith in a God that has been pretty good to me in the overall scheme of things... and I have plenty of scars to show for it!! Battle wounds I like to call them .... as for without these battles I have had to face, basically on my own, from deep within me, I find my mother ...... she was always quietly routing me on...... she knew how to do that with remarkable grace. As a mother myself, I don't know how she did it for so many years. As I learned as I aged, and my mother became more and more open about her thoughts, her fears, things she overcame in her own life, how very much alike we were in our inner strength. She often told me she wished she could have been more like me, I never understood that comment, as it was her, that I learned this grace under fire strength. I ache heavily for her presence at this time, sitting here typing through my tears I would so love to have her sharing this with me ..... and all I have is her spirit, and with that I will continue my fight onward. (hoping any typos will be overlooked tonight mom :)
To my extended family and friends; who have been so incredibly gracious with your support, I, nor my words, could ever convey my gratitude and heartfelt appreciation for your love and support.
With that .... I am emotionally exhausted and at this time will retire to a more peaceful place in my mind. I can't imagine what lies ahead for me .... and with that, need to get my rest.
Love to all !!
et
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