The Roller Coaster Forever Poised at the Top of the Biggest Hill

You know that feeling...right as the roller coaster reaches the crest of that first BIIIIIIIGGGG hill....that mixture of dread, anticipation, fear, excitement, wishing you could get off, stomach feels like it is located somewhere just south of your windpipe, which, by the way feels as if it has been stuffed with toilet paper and needs a plunger so you can throw up. That is the compromised state that I feel like life has become. Knowing what is coming but can't make it stop. Eliminate the excitment and screaming giggles and knowing that in a few minutes it will be all over but the laughing. There will be no laughing. And I never know when that front car will start to make it's decent. There have been several times when I have thought it was starting....this morning at 3:18 being one of them. When my phone rang and it was Adrianne my heart felt like it was going to explode in my chest. I didn't have time to have the rational thought that at least the call was coming from her phone and not the hospital number. But when I answered, and she told me that she had been throwing up all night and was running a fever and the nurse got on the phone and told me that she was showing signs of sepsis and they were bringing in a rapid response team to assess, I felt the car start to inch forward. A fever means she has an infection brewing...never a good thing. Oddly enough, admidst my many scattered panicked thoughts, one thing stood out so clearly; "Damn that Stites...I KNEW this would happen if he kept her inpatient so long." She was bound to pick up something being in the hospital that long. It is so easy to second guess and to have hindsight. I just kept thinking that there wasn't anything they were doing there that I couldn't do at home. It would have meant going in for xrays every other day, but that's OK. A moot point now. But panic reigned as I scurried around my kitchen,not knowing whether to get Declan and Lily out of bed and head for the hospital, ot take them to my sister's since my mom is out of town.
My biggest fear is that she takes such a sharp sudden turn for the worse and I am not there. What if she would slip into a state of unconsciousness and I didn't get to tell her for eighty zillionth time that she has brought more joy to my life than I ever could have imagined. What if she couldn't breathe and she was scared and alone and wanted me there? Sometimes she just wants me there just because she wants me there...and that is plenty good enough reason for me.
The doctor got on the phone and assured me that she was not in any eminent danger and that there was no need for me to drag my sleeping kids down there in the middle of the night.

But things happen quickly and sometimes the roller coaster operator likes to trick you into a short lull of comfort before He jerks the lever and down,down, down you plunge, unable to do a single damn thing about it.
I hate roller coasters. I want off so bad. So FUCKING BAD!!!!!!!!!!!!!!!

A Shadow of My Former Self

It used to take me one hour, at least, of primping, to go out into the world feeling beautiful. Feeling beautiful is so far down on my list of priorities that if society didn't demand it, I probably wouldn't even shower. Now, a fast shower, hair pulled back in a wet ponytail, and whatever sweats or baggy jeans I can find and I call it good. I just flat out DO NOT CARE! My mom tells me over and over "how much better I'd feel" with just " a little makeup". Oh.My.God. How can anyone think makeup will fix this? I DON'T CARE that the wrinkle between my brow has become permanant this past year. IF fact, the wrinkles that now seem to have overtaken my entire face. WHO CARES???? I don't care that my roots show. I know I look 10 years older than I did a year and a half ago. I DON'T CARE! Strangely enough, the only physical thing about myself that bothers me is that I've gained weight sitting in the hospital so much....I suppose I'm a stress eater. But I HATE putting on weight. Maybe I will become a stress non-eater.

I used to love to be the life of the party. Again, the farthest thing from my mind. I couldn't go out and have a good time even if I had the opportunity....the guilt would outweigh the buzz.

I have closed the door on my personal relationship because I don't want my attention diverted from Adrianne. I have done this to this person so many times in the past...whenever Adrianne would get sick, I always pushed the relationship to the back burner. We always seemed to find our way back. This time is different, though. I have such a sense of urgency to soak up every minute I can with Adrianne...I want to just breathe her in, embed her into my mind and my body, the fabric of my being. She is so much ME and I am HER.

I wonder if I will ever find me again? So much of me is intertwined with Adrianne. I know that I will never be the same again, but will I ever find any of the old me? The one who laughed instead of cried all the time? The first one ready for a party. Hell, usually the one who organized the party! Again, I just don't care. I don't care about that person anymore. I only care about the person who, right now, is lying by herself, in a hospital bed, wondering if she will ever gain any semblance of a normal life back. That is all I care about.

But Scarlet O'Hara Doesn't WANT to Eat an Elephant!!

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.