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.