A year ago, I was almost paralyzed by the constant thought that my daughter is dying....because she most certainly is. And I do mean paralyzed...emotionally, mentally, physically. To actually SAY such a thing....well, you just don't. For 20 years I didn't let my my mind wander into that dark corner because I didn't have to. She was healthy enough that CF hadn't forced me to become an ostrich by the name of Scarlet O'Hara. To actually say these words means that I believe them....and I do. I just don't know when. In the last 18 months there have been several times when I've thought the time was eminent. To the point we had my son come home from his specialty training in the Marines. I had the strangest thoughts at those times. I kept thinking what a mess my house was and how would I get it cleaned before a funeral?? I tried to think of something to wear, as sitting in the hospital room and grazing all day had added 15 pounds and nothing but sweat pants and post-prego clothes fit and Adrianne would certainly not be proud of me in that! She has always been proud of her mama and my sense of style and the way I did my hair and makeup (things I don't seem to do much anymore). Strange thoughts. And then the nitty-gritty stuff that had to be discussed with Adrianne. First we talked about life support parameters, because as I told her, I can't make that decision without the selfishness of a mother's love influencing and possibly overriding what she would want if she didn't flat out tell me. We talked about Mass, and songs, and being buried right next to her beloved Poppo, which comforted her and me and probably would have made my dad happy,too...he always took care of us in life, this made me feel he would lay there and hold her close in death (silly, I know, but it helps). We discussed gravestones and Adrianne surprised me with what she wants it to say. That's for her and I to know and the rest of the world when it happens. Beleive it or not, there was some laughing involved in some of this, as we talked about the funeral and what a celebration of life it would be. I made my Bean many promises that day, all written down because my mind was very foggy at times during that awful, awful time.
What am I scared of? "I suppose of life becoming too real and not having a place for me," as Ashley Wilkes would say. (That's two GWTW references in one post!)
When my baby goes, the realness, I fear, will overwhelm me, but as my mother says, we are made of strong German stock, and even though I don't know how, I will survive. It's the quality of that survival that I wonder about. I will be so utterly lonely, lonely like I can't foresee yet, but just know that it will be my hell on Earth when everytime I turn to laugh with Adrianne over something only she would understand and she won't be there and I won't ever hear that tinkly little burst of laughter again. We have the wonderfull odd ability to finish each other's thoughts, find the same quirky things funny, understand without explaining. Our favorite thing to scream at each other is "Get out of my head!!!!" . I have to say that I have had 22 years of thebest mother/daughter relationship I khow, sothat makes me far luckier than those mothers and daughters who are better at butting heads than at touching hearts.
So where will my place in life be? How does one go from being the mother of 4 for over a quarter of a century to being the mother of 3 in one fell swoop? Obviously I have 3 other kids who need me, two of them young, one grown, but a year ago I was convinced that I could only harm them more than help them. I know now that isn't true. In fact, they will probably be my salvation, take my mind off the child I treasured so much that she and I tried to invent new words to add into the lexicon that were stronger than just plain old :love: because I love her more than there is a word to express it. So now we have out own little code word that,in essence, means she is more loved than any other person on Earth times a million gajillion.
I know it seems macabre to talk about this when we don't know if it will be next year or 6 years or 20 years or 8 days or tomorrow. The only thing I know is that I will bury my little bean before it should happen. And before that happens, she will have suffered more than I can imagine suffereing, and she will most likely do it with the same dignity and grace with which she has done everything else in her too-short life. I have started to talk about it in small bits to my mom and my sister and a fewnclose friends. I see the look in their eyes that they think I have "given up." Do they see the look in my eyes that says "STOP FOOLING YOURSELF!!!! Don't you understand this disease at all?!?" It is time to shed the Scarlett O'Hara gladrags and be realistic about this and get on with the business of keeping her as healthy for as long as we can. I'm nt giving up....I will continue to fight until Adrianne gives me the signal. If I don't allow myself little times every once in awhile to deal in reality, I most certainly will not survive. I have to chew this little bit by bit or I will choke to death if I have to swallow it all in one bite.
People are ask me how I deal with this. The same way you eat an elephant...bite by bite.
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