ERASED

Adrianne was born with cystic fibrosis.  Anyone with CF is born with it. You can't "catch" it.  For most of her life, she was able to hide her disease, and she did it well.  She was one of the "cool" kids...not by design on her part, simply because people are drawn to her.  Her vivacious sweetness is like a warm blanket...it just make you feel comfotable and happy and loved....and it is so genuine.
Her good friends knew some of the ins and out so her disease, which at that time (in grade school and most of high school) it consisted of taking meds when she ate, doing respiratory treatments and going into the hospital usually once a year for a "tune up", which we could schedule during the summer and she could cry "vacation" or some other such excuse. 

As she began to get more and more sick in middle of high school, and her conditions became more complicated, it became harder to hide....it wasn't such an "invisable" disease anymore.  Hospitalizations became more frequent and the stays became lengthier.  She dealt with constant pain and then diabetes and frequent pneumonia among many other not-so-pretty to describe conditions.  But still, because of her spirit, her strength,and her indomnitable optimisim and her DEMAND that she get the most out of every experience, she perservered and endured.  She managed football for 4 years...up at 6am, hauling water jugs and equipment and loving the excitement of standing on the sidelines at Friday night games.  She worked every bit as hard as those players...probably harder...because her lungs only function at about half capacity.  But she loved it and was proud.  She was voted "Most Inspirational" in her senior class after spending a good portion of time in the hospital her junior and senior years.  We dressed and curled hair and did make up for prom in her and so many other milestone events at her hospital room "dressing table". She didn't let it get her down, even though at times she seemed to weak to dance...but she was bound and determined never to miss out on whatever life had to offer.  She worked every day after school, was often "mommy" to her young siblings when I was at work, maintained her grades and just loved life. 

She enrolled at K-State and immediately fell head over heels in love with Manhattan.  The summer before her freshman year, she also fell head over heels with Andrew, her first love.  Andrew ended up going to K-State, also, as did Adrianne's BFF, Kaitlin.  She was so so sooooooooo excited for this chapter of her life to begin.  It didn't last long.  Frequent hospital stays caused her to have to drop each semester, but every semester she was determined to try again.  In Septemeber 2010, right after school had started, she called home and said she was so sick and in so much pain she was going to  the ER in Manhattan.  I went down as soon as I got my little kids off to school and was there by 10am.  She was SICK....I took one look at her and I knew.  We stayed in Manhattan for 3 days and then her KU doc said get her home....Manhattan wasn't equipped to deal with someone with the magnitide of Adrianne's problems.  They lifeflighted her back to KU Med, and I sat bawling in my car as I watched the helicopter rise into the air with my baby on board.  Andrew and Kaitlin were in a seperate car, I'm sure doing the same thing.   I drove back to KC in about an hour and a half.  She was in KU for the next for months, sedated for the first month.  Her room was like Grand Central Station, full of well meaning visitors, but she was so terribly sick, and her dad and I were numb and exhausted to the point where we asked for a strict NO VISITORS policy until she was stronger.  That was so terribly hard on my mom and my sister who complied with our wishes.  The other half of Adrianne's family still felt free to just "pop in" whenever they felt like it.  We created a monster problem of sorts because when she was up to visitors, no one came, other than family.  Her friends, probably out of fear and being young and not knowing how to deal with this disappeared.  Oh, they might drop a note on her Facebook wall once in awhile... "Love you, girly...hang in there....you are so strong."  but that was it.  Andrew was still in the picture and oh how she loved that boy...they had dated two years and I have no doubt that he loved her, too.  For the two years prior, when she would be inpatient, he would sometimes come and stay with her at night, which were the only nights I was halfway comfortable going home and leaving her.  He had a way of handling things with her without getting flustered, which is a great quality when you are a caregiver.  She HATES being fawned over. 

A month or so passed and by this time she was awake, although in great, hateful pain.  Her doctor had not yet told me that he didn't think she was going to pull through this.  That came a couple weeks later . But I asked for a meeting with ALL of her doctors, her dad and I, and Adrianne, so that we could talk about what life was going to be like from here on out (although one uninvited aunt, who is a nurse, bulldozed her way into the meeting claiming that she could help Adrianne's dad understand everything that was happening....he's a smart man...he didn't need an interpreter, but if she isn't in the middle of the drama she doesn't know what to do with herself...yes one of THOSE people.  I remember the stench of her cigarettes in Adrianne's sterile hospital room and wanting to choke her...but not the right time to start an ex in-law war).  Because Andrew was such a big part of Adrianne's life, I included him in the meeting.  I felt that if he were to be in Adrianne's life for the long haul, as he always claimed to be, he should know what he was in for.  It would be a long time until Adrianne would start to recover...and life as we knew it was gone.  He lasted another month and then began to fade...the visits home became less frequent, the calls and texts went unanswered.  and I truly could not blame him....short of quitting school and his 40 hour a week job to pay for school and running home to sit by her bed, what else could he do...it was inevitable.  The pain, though, and the wicked sized thorn in my side was Kaitlin, who every day couldn't wait to post her pictures to Facebook showing Adrianne what she was missing....her old life.  Most of the pictures usually included Kaitlin hanging on Andrew in one way or another...the usual drunk college party pics.  I asked her over and over to just be a little compassionate. Was it more important for the world to see how drunk she was every night and what a cute dress she was wearing and all the parties she went to with her sudden new BFF, or could it possibly be more important to spare Adrianne a little of the devestating emotional anguish she was going through on top of the physical. ....afterall, this was the girl who claimed she couldn't live without Adrianne, loved her more than life, would do anything for her, was her other half blah blah blah...bff's for 8years and all of that.  My pleas fell on deaf ears...well, not exactly deaf; she turned it around so that she was the victim and claimed that no matter what she did, I found fault with it and that she was so emotioanlly distraught without Adrianne she couldn't get out of bed to go to school...her parents had to come get her since they feared for her mental state and didn't want her to drive alone.  Such BULLSHIT!!!! Give me a break....doctors are asking us to make life support decisions and Kaitlin is so overwhelmed she can't drive.  Have I ever mentioned that she has the worst case of only-child-syndrome I've ever seen.  She has quite a knack for turning Adrianne's tragedy into her own.

I am sooooo off track of where I initially wanted this post to go.

So now, Adrianne, while still often sick, would give anything for a friend to come see her.  I know they all just graduated and are getting jobs and getting engaged and living their lives (KState's graduation day was pure agony and anguish for Adrianne....that was supposed to be HER!!....and yet Kaitlin couldn't understand why Adrianne didn't go to the ceremony).  So now, all of those BFF's who swore they loved Adrianne soooooooooooooooooooooooooooooooooooooooooo much...always the message "IF I can do ANYTHING please call me!"  She calls.  They don't come. One friend had promise 6 different times and comeupwitha new excuse every day.  Even Kaitlin usually always finds an excuse...after so many broken promises...Adrianne acts like she's hardened to it, but I see the tears creep quietly down her beautiful little cheeks.  Her friends are now almost all virtual friends who have CF, also.  And now many of my friends have become her friends, too,  specifically Deanne and John Stephens, who in such a short time, have made her feekike one of their own...I love them more than anything for that.  Her very bff is her stuffed hippo, Hermie.  I am Hermie's "Mimi" and he is her baby...complete with secret language and all.  Her best friend is a stuffed animal because Hermie can't let her down.  Hermie doesn't say he will come see her, and then give her a bogus reason why he can't, and then the real reason for the blow-off shows up in the form of FB pics the next day.   Every single other friend has let her down.  I think it's because they are scared of seeing her look so different, so weak and fragile.  She's had a couple of grade school friends come back into her life that have put a smile on her face. 

She told me she feels like she has been erased. There are days when I don't think my heart could hurt worse....but that statement HURT like hell.  I am so  proud, yet somewhat saddened, that she usually tells people that her mom is her best friend.  But she has always said that...way before she got sick.  God, how I love that child.  But a Mom doesn't replace those friends who just forgot all about her.

This post was supposed to be about not being scared when people get sick....and of course I have rambled as usual.  But then, since I am my own therapist, I will just charge myself an extra hour of "treatment."  People, (meaning 22 year old kids) she is sick, but she is alert and laughs and jokes and is still ADRIANNE!  What are you scared of????  What is wrong with you?  Just because she can't go out and party every night doesn't mean she doesn't have the gift of the greatest friendship you could ever know....and you all know what an amazing friend she has been to you. She was the one you all went to with your problems, hers was the shoulder you cried on.   She was the glue that held you all together and now you have erased her. She is a living, breathing, feeling, beautiful girl whose heart is broken, on top of her body being broken, especially when it comes to Andrew.  How dare you, you selfish, self-absorbed sloths!!  Or maybe you are just cowards...you can't deal with disease.  I hope to hell none of you ever have to face  anything like this in your breezy, carefree lives.

How dare you ERASE my baby?

It's a good thing computer screens don't soak up water drops as paper does...then again, I guess I better back away from the keyboard a bit.

Perhaps sleep will come now that I've vented. Whew!  Now I am just mad and revved up, so maybe a glass of wine at 4am is not out of order...you think??

Please don't forget her just because she'snot doing shots at P&L or in Aggieville.

What Perfect Timing

I have this friend.  I've come to rely on her for so many things.  Her wisdom, which is so spot on it amazes me.  Her ability to understand a lot of things about my life.  Enduring some very, very tough circumstances in her own life and to have handled them the way she has is a book that needs to be written. She boosts my self esteem, she says the exact right thing or knows when not to say anything. She's become my therapist, whether she likes it or not.  She sees beauty in everything.  We share a great love of music and find both solace and joy in just the right song.  We share the same very quirky sense of humor.  Nothing is off limits or too weird, which I love!!   She rails at the injustice of the world like most people, but unlike most people, she tries to change it. She always has a ready smile, a ready tear, and the backbone of a steel sword.  She has a marriage that makes me green with envy....25 years of ups and downs and you can still just feel the raw powerful love that dissipates for most couples after about 6 years. And not to be too crude, but she is one heck of a sassified woman, in the words of Clarence Carter, (if you don't understand, google the lyrics to "Strokin'!!)  But that's off the subject!  Back to her and I!   She has become ESSENTIAL to me in the last 18 months. SHE JUST GETS IT.... probably because of her own life circumstances and dealing with a very special special needs child and the fact that she is just this free spirit who sees life through eyes that very few people possess.  Obviously, I've come to value and treasure our friendship greatly. What is so ironic about our friendship, is that we have lived very parallel lives; we went to the same grade school, the same high school, we have many of the same friends, we have always known each other by name and sight, but we didn't become friends until about a year and a half ago.  I have Facebook to thank for that. We've marveled at the fact that, despite the fact of being very kindred spirits, it took us 40 years to become friends.  Last Saturday, she spent the day away from her own family and came and sat in a tiny, claustrophobic 8x8 room in the ER and acted like it didn't suck. I always have volunteers to come to the hospital with Adrianne and I, but I almost always politely turn them down because the room is cramped, constant people in and out, and frankly ,I just don't want to make small talk. But talking with her isn't like that. She somehow manages to get below the surface that I don't usually go with many people. But anyway, back to why it took us so long to connect and create one of the most authentic friendships I've ever had.

It was just the right time.  During the worst time of my life, I found the friend that JUST GETS IT and what a blessing she is in my life.  And Adrianne gets how fabulous she is, too, and she made sitting in that crappy ER room almost fun....Adrianne has the same irreverant sense of humor as she and I so it was perfect, and I wanted Adrianne to get to know this person who has come to mean so much to me and vice versa.  I wanted her to understand the beauty that radiates from my daughter's soul...and it only takes one meeting to get that. 

So there is my answer as to why we have known each other for over 40 years and have only relatively recently become friends. And now I don't know what I'd do without her. 

Deanne Tomasich Stephens, I love you with all my heart.  Thank you for you.

A WHOLE LIFETIME AHEAD OF YOU

My daughter is going to die.
I don't know if I am becoming unhealthily obsessed with the thought or if I am healthily trying to process the fact and prepare myself for when it actually happens. Which no one knows when that will be. Could be tomorrow,could be in 10 years. I feel like such a pessimist when I say that it's more likely to be closer to tomorrow than 10 years...I would be so grateful for just a few more years.....if they could be less painful years. I don't want her to suffer 4 more years the way she suffers now. So many levels of suffering that you just don't think about until you just don't have a choice anymore. Her mental and emotional suffering have started to catch up to the physical as it is dawning on her that life is not going to get magically better. Her life got ripped out from under her a year and half ago and it's not going back. It sucks. This would have been the semester she should have been graduating from K-State. Her friends, or the people who always called themselves her friends, are planning their lives, careers, families, paties, waiting tables, who knows....they have their whole lives to look forward to. That's one of those sayings we say but no one really puts real thought into. YOUR WHOLE LIFE AHEAD OF YOU!!!!!!!!!!!!!! What a thought. What a giddy, throw your arms up, dance in the rain twirling round and round while you sing a Cranberries song at the top of your lungs thought. That's what it should be anyway. Right now, the thought of having my whole life ahead of me is about more than I can stand. Oh GOd, what I wouldn't give to trade places with her. Sacreligious or not, I truly would make a deal with the devil to give her her WHOLE LIFE AHEAD OF HER. I know she has a life waiting for her on the other side...as mad as I am at God, I still cling to the beliefs that are supposed to get you through times like this. They aren't working very well for me personally right now, but I do believe in the afterlife and that God will welcome my baby with gentle open arms and then her Poppo will scoop her up and smother her with kisses upon kisses upon kisses. And she will have no pain. Her whole life, INFINITY, with no pain. Just pain free joy. And yes, I know we will be reunited. But God help me, what do I do in the meantime. People will say life goes on, that I have other children who need me, that somehow it will get easier with time. But those people don't know this fabulous, miraculous, so funny and fun, oh-so-unique relationship that has been at the core of my life for 22 years. I try so hard to imagine how I will fill that, I worry terribly that I will somehow damage Declan and Lily, especially Lily, making her feel that she somehow has to live up to or replace this phenomenal child that I built a special pedestal for the day she was born. I'm so afraid Lily will feel less special or loved because I go on and on about the daughter I lost.

One thing I've become aware of lately is that I have started to realize that if she isn't going to get better,and by better I mean just to a level that she can function without excruciating pain, I don't want her to live like this. I almost feel like I am going to vomit as I type and realize what I'm saying. And I get the sense that she is coming to the same conclusion. We've had some good conversations about this. Probably what I love the most about Adrianne and I is that we can talk about ANYTHING. Even how she wants her funeral. But we are learning together to accept the unthinkable. It is so unthinkable and yet it's all I think about...not very funny irony, is it.

When I start writing these posts I never know where they are going. They usually don't have some profound point.They usually ramble in many directions,none of them poignant. But for some reason I am stuck on the thought of having ONE'S WHOLE LIFE AHEAD OF YOU! And fucking unfair it is that that means something different for Adrianne than it does for other fresh -out- of -college, set -the-world -on- fire 22 year olds. I grieve every minute of every day for the things that won't be, that she won't experience. I grieve for me and I feel so cheated. I grieve that we won't shop for wedding dresses together. I grieve that she won't find that overwhelming white hot love that you think you're the only one in the world that feels that way!!! I grieve for the moment she realizes that she's carrying anothing human being inside her and even more so for that moment 8 1/2 months later when that nurse lays that little pink and white gunky squirmy package of pure love on her tummy and she knows that she can never love anything else like this again. Again, I grieve for me, because I would love that baby so much I can already feel it in my heart. It already hurts andit'sonly a thouhgt! I would pray that she/he could be the teeniest bit as special as his/her mama. But I would know that's not possible..although, from what I hear about grandbabies, they way outshine their parents! My whole life ahead of me....it just seems like a vast empty field. Wha do you do in an empty field? IT sounds so selfish to be bitching about having a life ahead of me when so many people don't. Life without Adrianne seems lke that vast empty wasteland. I will figure out what to sow or build in that space...I know that whatever I do with the rest of my life, it will center around Adrianne in someway, be it raising CF awareness, fundraising, creating a foundation in Adrianne's name to help grant the dreams of other CF kids...I don'tknow. I just know that I wish life was a little more fair and the playing field a little more equal. OUR WHOLE LIVES AHEAD OF US.....it shouldn't mean 89 for some people and 22 for others. Andif it means 22 for some...it shouldn't be Adrianne that gets the short stick. I'm sure the other guy who gets the bad card disagress, but Idon't care!!!

SO..Adrianne's whole life ahead of her...I can only promise her one thing for sure....that time will be filled with all of the love and smooches she can stand.

Then again...some very cool things have been happening in the CF field lately. PLease, please, please God, let them happen in time. Give her time to fall in love. She wants to be a mommy so bad. Please give her time. Let her have just a few of life's great moments...I'm begging, praying. I could make deals with You all day long. I will do every good work I can think of. I will be a better mother. I will be a better daughter and sister and aunt. I will meet my neighbors and I will be a friend to anyone who needs me. I will be a better person in general. Take anything from me....give her some of life's golden times. Please, oh please. Oh please.

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.

What's in a BFF?

Adrianne met the girl who calls herself Adrianne's BFF the summer before freshman year of high school. They met at Camp Tekakwitha at the climbing wall and for whatever reason, they just clicked. It's not always been what I consider a perfect friendship, and I know Adrianne would agree. "K" has always been extremely territorial of Adrianne, often, I felt, limiting Adrianne's other relationships, none so much as those with boyfriends. K likes to be the puppeteer, the arbitrator, the bearer of all news Adrianne Orel. She also has the worst case of "only child syndrome" I've ever seen. Case in point,her own birthday is extremely important to her. Every September, for the last 8 years, Adrianne gets stressed to the point of tears, trying to make sure that K has the best birthday yet. On her 20th birthday, Adrianne checked herself out of the hospital too early, despite my wishes and her doctors' very strong suggestions, in order to hightail it back to Manhattan for K's birthday. She was back in the hospital at square one three days later. She knows she messed up that time, but K has always had this strange stronghold on Adrianne. Last year, for K's 21st birthday, Adrianne was so, so sick, in the hospital, being talked to about life support parameters, and K literally told Adrianne that she had once again managed to steal the limelight from her birthday by being sick. Are you freaking kidding me? Needless to say, K and I don't get along. The past couple of weeks have shed a lot of light to Adrianne and I about lies that K has told to Adrianne for past year regarding Adrianne's ex-boyfriend, Andrew, and in reverse the spoonfuls of absolute shit that she has fed Andrew during that time, always playing them against each other but always crying innocent when she's called out.
I have for years wondered what Adrianne gets out of this relationship. I wonder why she isn't absolutely filled with rage, as I am, at K for stomping out every little last ember of hope Adrianne had about Andrew this past year. I have thought about it so much this past week and finally it dawned on me. K is Adrianne's last link to life as she knew it, when things were normal, before she got so sick that we permanantly live in this compromised state. Her other friends might stop by her Facebook wall once in awhile, or text her now and then, but they are all living their own lives, as they should. Adrianne has no other vehicle to make new friends right now...me and Hermie are it. Hermie is her stuffed hippopotamus whom she truly does love...Hermie is really her best friend, now. I told Adrianne the other day that I finally understand why she puts up with K and her lies. She just looked at me with those beautiful eyes that I have loved more than life for 22 years and said "I just don't want to be left with no one."

My heart broke.

The SINGLE MOST THING that I am proud of in my life are my relationships with my kids. When Adrianne was in high school, her friends would get mad at her for telling her mom too much. When asked her her best friend is, she usually says "My Moom." Does she know how absolutely terrified I am of being left alone? Yes, we've talked a lot about it...it's probably one of HER biggest fears. Last year, when her doctor's didn't think she would be coming home again she said "Moomy, Dad has Kathy, but what will you do without me?"

What indeed, my beautiful baby girl. I truly have no idea.

Well Meaning Words

Adrianne has had CF her whole life. Her whole life we've heard phrases like "She's a trooper" and "What a fighter!" and "You are so strong" and "I don't know how you do it." I have never given these things much thought because I just took them for granted. They are just the things people say when 1)they want to say something, anything to make you feel better, or 2) they don't know what else to say. They truly are well meaning words. This past 16 going on 17 months, I have had an abundance of time to think about these things. What do they really mean? What does it mean to say that Adrianne is a fighter or that we are strong? It means absolutely nothing, I've realized. We are no different than anybody else. We had this nasty, horrible disease dumped into our lives out of random fate and anybody else would react the exact same way. At least, I think they would, because I can't imagine acting any differently. Adrianne is a fighter because she has to endure horrendous, endless, sometimes gross, sometimes very painful, sometimes just bothersome, but always life-threatening things? Am I strong because I hate the fact that my child has this disease and would give anything in the world to be like the character in "The Green Mile", I think his name was Big John, who could suck the pain or disease or badness out of someone's body and take it into his own? We aren't special. We just have no choice. I think sometimes Adrianne feels like she has to live up to people's perception of her. I know I feel that way. I feel like such a phony, a fake, like my life is a big lie because people think I'm something I'm not. I feel like everyday might be the day I fall off the edge into the dark abyss of a nervous breakdown. Sometimes I hope for that day because I wonder if losing my mind might be some kind of sweet release. ( Realize, this is just babble...I don't truly want to lose my mind!! But it's kind of a strangely deranged, fun thought once in awhile. )

And yet, as I sit here thinking about how cliche' these things seem and knowing that they are said out of the need to say SOMETHING, I still find comfort in just knowing that people do care. It's not the actual words that have meaning; it's the fact that someone cares enough to try and find those right words to help us get through the day. So truly, the words, whatever they are, do their job! SO, thank you, to each and every one of you that send us your thoughts and prayers and good wishes everyday. Please know that they do reach their target destination! And please keep thinking of us because I realize more than ever how much those thoughts and kind words mean to me. Adrianne and I will do our best to live up to them! She will fight this ugly disease and try and gain some semblance of her life back, and I will try to ward off the nervous breakdown that would leave my kids without a crazy mother!

Just the musings of a mind with too much time on it's hands....I suppose this too shall pass.

No, it's not OK, it's definitely fucking not OK!!!!

I guess I should have included a parental language warning with my first blog. Well, now you have it. Sometimes, the F word is just the only word that works for me. If I offend you, I apologize, but you don't have to read my blog!
Adrianne started not feeling well on Thursday. I wasn't toooo overly concerned yet, just watchful. She took a shower and I sat on the toilet talking to her while she was in there in case she needed help or got dizzy. As I was drying her off and combing her hair, she said "You know, Moom, I have been thinking a lot lately. I know I'm headed back to the hospital soon. I can feel it. And I think I have come to accept that the stays are getting longer and more frequent. The time between stays is getting shorter. It's just my disease and I am resigned to the fact that that is just how it is. And it's OK."
My mind was immediately screaming. "It's not OK. IT is absolutley fucking not OK! IT will never be OK. It's not fair and I fucking hate it!!" and then my next thoughts went something like "Oh my God, no, don't let her become accepting, don't let her give up yet. They told me to let her make her own decisions, let her 'drive the bus'. They (the palliative care people) told me that she would know before anyone when she was ready. But she can't be ready! It's NOT OK!!"
Last year, when Adrianne was very, very sick, and her doctors didn't think she would make it, I had a lot of counseling by hospice and palliative care professionals who told me that the most important thing was to let her die without feeling guilty that she is disappointing me by "giving up" or to not let her worry about leaving me behind. They told me not to push her....to let her make her own decisions as to when her body was tired and ready to let go. I listened to them and I did what they said. When Adrianne was more coherent and I told her everything that had been told to me, she gave me very specific instructions to disregard all I had been told (pretty sure she used the term "bullshit" several times ) and to always keep pushing her, to never let her give up, because she has a lot of living to do and she says she's not going anywhere but home. So, I'll take her directions over theirs anyday of the week. THEY DO NOT KNOW MY DAUGHTER LIKE I DO! They don't know how charming and persuasive she is, how much she loves life, how she walks into a room and people gather around just to be near her.

So, to CF and all of it's cronies that keep on attacking her body, understand "IT'S NOT OK, you stupid motherfuckers and I will keep fighting you til I have nothing left. Do you understand??????!!"

Because without my girl, my little bean, nothing in life would ever be OK again.