Saying Goodbye with Grace

This has been a whirlwind of a year so far. I've got lots of things swirling through my head all competing for space, wanting to bust out in words. I've got tons to blog about, but the fingers can't seem to type what my mind feels and wants to say. It feels like my mind is firing thoughts a mile a minute, jumping from one thing to the next. I start to write and overwhelm consumes me. What the heck is wrong???? I've never been like this, never unable to write what I feel.

But I do know this, I owe a blog dedicated to a very special, vibrant, remarkable, loving woman named Eva Markvoort from Vancouver, Canada. I've never met Eva nor directly interacted with her. But in the CF world, you would have to live under a rock to not 'know' Eva. She has made herself a very public face of CF, with her LiveJournal blog and subsequent moving documentary film, showing her struggles with end stage CF and receiving her double lung transplant.

The cameras followed 23 yo Eva as she waited for her new lungs that would save her life. The lungs did come in Oct 07, she had the successful transplant surgery, and regained her glorious, flamboyant love of life.

She spent her new found health and time promoting her documentary, CF Awareness, and organ donation. All the while being surrounded by her unending support circle of family and friends. She became a very public figure in Canada, between her documentary '65_RedRoses' many newspaper and magazine articles, and TV news and talk show interviews. Eva became the face of CF and of organ donation.

Life was good for her again, until 9-09, when chronic rejection set in. Who knows why a body all of a sudden rejects a donated organ after welcoming and celebrating it's arrival 2 years earlier?

All of a sudden, at 25, Eva's gift of life turned against her, gradually losing function. Within months, her lung function plummeted to the 16% range of function, barely enough to sustain life. She was listed for a 2nd lung transplant and put on the waiting list. The waiting has come to an end, and the inevitable, unspoken end is near. Eva knows this, her doctors telling her she has just days left of her life. In typical Eva-fashion, she chose to share her courageous final goodbye's to the very public she drew close to her.

Her bravery and acceptance in the face of death is an inspiration. Her message of love and be loved touches everyone who watches this heartfelt video. Surrounded by her family and speaking from the heart, it is clearly evident that she is loved by so many people. She posted this on her blog Thursday, Feb. 11.




God speed and peace Eva as you travel your final journey. May God wrap you in his open loving arms, take your pain away, and welcome you into heaven. You will be truly missed.

Eva's Live Journal blog


Here is the trailer for her documentary made in Canada. It has not been shown in the US yet.
65_Redroses Trailer

Out with the old and in with the new

Time to post a short one, if nothing else to rid my blog of the last negative entry about 2009 . . . LOL.

The year has started busy as usual. Packed up all the Christmas schtuff, and cleaned the house like crazy. I can't wait to return my house back to normal after the holidays, even though it looks bare.

Jen celebrated her 30th BD on Jan. 19th, yikes!! It just seems like yesterday I turned 30. I can't believe I have a 'child' who turned the corner into her 3rd decade. Other than feeling old, Jen is actually doing very well. She is finally letting go of her marriage, accepting that fact that her and Brent are over. She's looking forward to her 30s as a new chance to start fresh.

She has been attending a divorce care support group at church, it has been a tremendous help. Her friends are a great support to her, helping her to move forward. Plus she started a new job as a dental asst. which she really likes. I still watch the kiddos while she works which keeps me and Terry both hopping.

I had a clinic visit on Wed 1-20. Not too bad, but could be better. My FEV1 numbers are down a little bit to 47%. The numbers drive me crazy, because I feel pretty good. When the numbers don't reflect how I feel, it's frustrating because I expect them to be higher. Dr. R assures me to not focus on numbers so much, rather how I feel. I agree, but still . . . The good news, if you want to call it that, about my numbers being down, is my FEV dipped down to 1 liter. : ( That number officially qualifies me for a handicapped placard for parking in a handicap stall. There have been a few times when I don't feel well or on IVs, that walking distances is a chore and makes me SOB. I will use it for those times I'm under the weather. Dr. R gave me the necessary paperwork and I'll take it to the DMV this week. UGH, hate going to the DMV.

So, I'm up to speed, I'm going to try to be a good blogger and keep this more up to date. For now, I took a cue from Jen and rearranged my attitude, to start 2010 anew as well.

Good F*ing Riddance 2009

*to the tune of It's My Party by Lesley Gore*


"It's my blog, and I'll rant if I want to,
rant if I want to, rant if I want to . . .
you would cry too, if my 2009 happened to you!"



Yep, this is a bitch session for which I think I'm entitled. I usually try to stay upbeat, but my outlet is my blog. I'd rather spill it here than to take it out on someone. Plus, I'm not one to hide my feelings, I am transparent. I speak my mind, I don't sugar coat or ignore how or what I feel and I try to be honest. Hopefully this blog, will wrap up my 2009 bad attitude and I promise to follow up with a positive blog in the next week. Because after all, through all the hard times, comes lessons learned and positive outcomes. For now, here's the nasty, raw deal that was 2009.

2009 has been one of the most stressful years of my life. I feel like the year as a whole chopped 5 years off my life, both physically and mentally. I blogged about just some of what the year brought us back in March, here. I could see then that the year was setting up to yield a doozy. Little did I know that the bad news year was not done with me yet. It still had a few more surprises for me to chew on, spit out and chalk up to the stinkin' list.

~~ 2 more hospitalizations on IV antibiotics, one in August and another in October, just 8 weeks apart. Both started as a cold/virus I caught from the grandkids, went directly to my lungs and the rest is par for the course. I was very sick in August, I should have stayed the whole 2 weeks in house instead of coming home to finish the IVs the last week. I don't feel like I fully recovered from the first bout before the second one began. The year tallied up with 3 hospitalizations total.

~~ We sold the cabin in October. I was not prepared for the bittersweet heartache it caused both Terry and I letting it go. It represented the embracing, embodiment of us . . . our peace, quiet and respite from real life. Snatched away from us, certainly not by choice. Not to mention, the $$ ass whipping we took on it, selling out at rock bottom. :(

~~ Work for Terry continued to be non existent until late in the year. Some dribbled in, couple days here and there. But we managed to survive on a fraction of a normal year in addition to taking in 3 more people. How did we do it? I still wonder. But after being a single Mom myself for many years, I retreated into the all too familiar 'ultimate frugal mode', buying only the absolute necessities.

~~ Extreme drama on the home front. I haven't blogged about this family problem previously but I think by now, everyone I know has heard the story. In a nutshell, Brent up and left Jen and the kids last Feb. Said he didn't want to be a husband and father anymore, spun out of control with other women, drinking and used bi-polar as his 'excuse' for bad behaviors. Hmmm, don't think so. Jen, a stay at home Mom, had no job and no place to go, so she and the kids moved in here. Almost a year later, they are still here.

The drama coming from him, his family, and him not taking responsibility for the kids is unbelievable. Brent wanted his 'freedom' and filed for divorce June 1. He is a deadbeat living with his parents for free, not working since last March and living off the fat of the land. His naive, loser parents support him at all cost and let him loaf. The court awarded Jen a temporary child support order for a whopping $57 a month from Brent!!!! That doesn't even pay for diapers. BLECH!

Meanwhile, Jen is doing everything she can by getting 3 jobs and going back to school. This means I'm watching the kids while she tries to get her life back on track so she can support them. I'm struggling physically trying to babysit kids, having them live here and trying to stay healthy. I can no longer protect my health and stay away from the kid's colds. My life has been non stop, not getting the rest I need to regroup. The whole situation has taken a deep toll on me, healthwise. My PFT numbers reflect the toll beginning last Feb.

I could certainly write a book about all the sh*t we've had to deal with on this chapter. The continued sheer pain and grief he has caused Jen and the kids is unfathomable and inexcusable. To say I'm bitter towards Brent and his family, is an understatement. There are no words harsh enough I can use to fling their direction. And believe me, I have given them a HUGE piece of my mind, I don't mince words at all. Not many people have had the pleasure of seeing my 'passionate Mama Mia' Italian persona erupt and spew, but they sure have. Thanks Dad, for that genetic gift? ; )

~~ Lastly, nothing is as devastating as a death. As I have said in previous posts, our CF community suffered a overwhelmingly sad year, losing too many young lives. I have known a total of 6 online and real life friends pass away in 2009.

The last was most definitely the one online friend that meant the most to me. Dear, sweet Melissa who passed away in early December. I haven't even been able to blog about her because I was weary of death, in denial, unbelieving that this could happen to her. Not her, not now, no way. In my mind she wasn't that sick, just going in for another routine round of IVs and tune up just before Thanksgiving. She started having complications, not being able to breathe in the hospital. She made the decision to stop all treatment, to fade away and let her die. She was done. She still had so much to live for, to keep her going. It just didn't make sense.

She lived in a small town in New York, was 41, married and had a 12 y/o daughter. She was the heart and soul of the cf.com support forums. One of it's first members, she was the unofficial greeter to all those who joined. She became a friend to everyone and spent hours a day responding to posts, blogs, and threads. She chatted in the evenings to anyone who would talk and got along with everyone. I loved her sense of humor, her honesty when warranted, her supportive nature and her empathy towards our fellow CFers. She was truly a gem and will be sorely missed in our online family. The silence left behind by Mel's absence is deafening.
RIP Melissa, I think of you often friend.

I believe that is enough, I'm emotionally drained and I'm done.
See ya 2009, I'm not looking back.
You are history.
*Rant over.*

Tune in for a more positive 2010 blog.
2010 HAS GOT TO BE a better year.
Nowhere to go, but up.



See, with all that out of my system, I can now smile again. : )

Merry Christmas!

It's that time again.
Family, friends, baking & cooking.
Shopping, wrapping and decorating.
Eating, gaining and New Years resolutions.
Opening, tearing, smiling, and thanking for blessings.
And when all is said and done, I'm thankful for yet another Christmas to add to my memories.

Merry Christmas to all.
May you and your family have a joyous and fabulous holiday season.

And on that note:
My Dream for CF ~ make CF stand for "Cure Found"

Giving thanks for life

Another Thanksgiving has come and gone. We did the usual holiday fare, cooked a turkey with all the trimmings. We kept it simple this year, without inviting my brothers and their families, it's just too much this year for me to entertain 16 people. So it was just us, Jen and kids, Josh and my Dad. Small and easy. Then Jen, Josh and kiddos hit the road to visit their Dad and spend the night. Our Thanksgiving was cooked, ate, and cleaned up by 3.

When all is said and done, I've reflected quite a bit this year about family, my mortality, my health, and just life. I've always appreciated every year that the Lord has graced upon me. My heart knows I've been kept here for a reason. My heart knows that my longevity is in the Lords hands and no one else. Why am I counted among the new face of CF? A 50 something, Grandma, with grown kids. One thing for sure, I don't know why I have lived this long, when the median age for CF survival was a mere 12-14, when I was diagnosed in 1981. Thanks to new drugs and therapies, the median age has increased to 37.

I belong to several online CF forum boards, blogs, Facebook and chat rooms, and we all seem to know each other in one way or another. Our connections via CF is instant and we become virtual fast friends, even though we are spread throughout the country and in some cases in other countries. Some meet in person, even though our CF centers discourage it because of cross contamination issues. But I still see my friends at clinic or the hospital, keeping our distance, wearing masks and gloves. That is about the extent of my physical interactions with other CFers. I don't take chances as some do.

Our online community know the screen names, who's sick, who's in the hospital and who is not doing well. We are a tight group who know everyone's story, which is all to familiar to all of us. Our journey's are vastly different, but we are on the same boat, battling the same enemy, to the same end destination . . . death.

This year has been especially tough, losing too many CF aquaintances and friends. Some truly shocked me, because either that weren't that far into the disease progression or they went down hill very fast. A few had a major hemoptysis, (bleeding lungs) and literally bled to death.

But I have to say that one brave 26 yo woman has impacted me like no other. A special, sweet, spiritual gal named Courtney Hill from Texas. Her death has literally put me at peace about my own death. Her last days have reinforced my personal feelings that I don't really fear death itself, but what I have to go through to get there. Her last 6 months were sheer torture for her, having failing kidneys, failing lungs, being on a vent for months at a time, being near death, receiving her double lung transplant just in time, and failing kidneys again. After 6 months in the ICU, she cried uncle and said enough. She decided to stop all further treatment and die on her own terms.

Her extremely supportive and spiritual family, stood by her wishes and made her last days joyous, full of love and memories. The Hill Family deserve a gold medal for helping Courtney die in the most peaceful way possible. Her older sister Megan, keep a blog over the last 6 months to update friends and family of Courtney's journey. I've copied and pasted the last 4 days of her blog here. Such a truly, loving inspiration to read, have a box of tissues near by. The whole blog is here: http://courtneylynnhill.wordpress.com/

I pray to God that when my time comes, that the Lord bestows upon me the dignity and grace to have my final exit just as peaceful.

God bless you Courtney, soaking up all that Heaven has to offer.
I know you are at total peace and breathing easy now.

Blog:
It’s her final decision
November 20, 2009 by BigSis Meg
This post comes to you all with great sadness, but at the same time much happiness.  I’m sitting in Court’s ICU room, her residence for the last 6 months minus 1 week at home back in September.  We have backed Courtney’s final decision today to stop any further procedures and medications so that she can go home with the Lord, with our Dad and our Pop Shea, our grandmother Muzzie, Popsy, our cousin Diana, our Marsha, other Cysters and Fibros who have passed on and so many others who love Courtney dearly. 

As I was sitting in Courtney’s hospital room this morning, waiting for Mom and Nanny to arrive, her Dr. Blewitt came in and told me that they were going to have to do the shunt procedure for her to survive this battle. He told me what the procedure was and explained to me the possible side effects and complications that could happen. All of this Courtney was aware of and had already told us that she didn’t want it done. He then turned to Courtney and asked her if she wanted to move forward and she shook her head and mouthed “No, I’m ready to Die”.  We have witnessed the challenging struggle she has gone through her 26 years of life, but mostly the last 6 months. 

They have stopped the Dialysis and all antibiotics she’s been taking, and we are now waiting for the Comfort Team to consult us on how to make this most comfortable for Courtney.  She’s told us that she is not afraid, she’s ready!  We are so proud of her.  She’s so strong!  She has taught us so much and will continue to touch our lives.  As we all sit here with her in her room, we have told her that she’s going to have a big job being a guardian angel and keeping over all the babies up there in heaven.  

I’m so happy for you Court that you will be moving on with your life with God. You have told us about the times when you saw Jesus in your room and Dad was leaning up against him. You’ve told us about the Angels who have come to you. That goes to show that you are an Angel on Earth.  Only one so special and pure like you would have the gift to witness such delight.  I’m so proud of you and have witnessed the strength that will live in me forever. Now you get to go have an Eternal Vacation and go dance in the streets!  You get to go breathe easy and play golf with Dad. You will go walk the beaches with Uncle Jack and Pop.  Just rest for now.
I love you!  We love you!


Holding On
November 21, 2009 by BigSis Meg
The last 12 hours have been comforting. We want to Thank You all from the bottom of our hearts for all of the love and compassion you have shared with us about Courtney.  Thank you for sending your thoughts and prayers. We have shared them all with her and she absolutely adores it. Your comments have kept us warm and like I said…comforted.

Courtney was able to see her nieces and nephews last night and say their goodbye’s. They all talked to her about school, Cub Scouts, Choir and Camryn sang “Jesus Loves Me” to her. Nothing brings a smile to her face like her kids – Kaden, Shaffer, David, Daniel and Camryn. Courtney told them that she’s missed them and she loves them. That’s what they needed and wanted to hear and she loved to hear it back. 

We had over 12 people in her ICU room at one time, all our family. It was like we were all at home with Court sitting around just laughing and talking. Because Court can’t talk back with the trach and on the ventilator, she just loves to hear us all talk around her and laugh. Aunt Joan flew in from NJ and surprised Courtney last night around 11pm and she was so happy!  We all left a little after midnight last night but  Nanny and Aunt Joan stayed with Courtney all night so that she wasn’t alone. Mom returned around 4am and Kelly, Lindsay, Chapin and I returned around 9:30 this morning.  

Dr. Blewitt came in this morning to check on her and he told my Mom that she could hold on for the next couple of days.  Courtney understands that, but she’s ok with that.  You should see how comfortable she is. I believe it was a huge relief to her that we have all supported her decision and she’s so ready. I will keep you all posted as things progress because I know how many people are checking on her.  Please continue to pray for Courtney as I know she’s feeling the Love.



Angels Among Us
November 21, 2009 by BigSis Meg
Thankfully I have brought my laptop down to the hospital to use while Court is in an out of her resting, so I’m able to share this time with you. I just had to do a quick blurb of a story Court just mouthed to us. My Hill side of the family will appreciate it.  Court told us that she had a dream yesterday that our cousin Diana was with her in the hospital room, following her around. 

Court said she was introducing her to everyone in the room. Diana stood behind her while she walked over and sat in a chair.  You see, what’s so cool about this story is that Courtney never really knew our Cousin Diana.  Which would explain the introductory…we knew her but Courtney didn’t. She was in a horrible accident over 20 years ago and passed away. Courtney was just a baby when she passed. She described to us what Diana looked like and that her bright Aqua/Blue eyes stood out.    This is a true testament to Angels Among Us. I know Courtney is on heavy meds right now, but how would she know what Diana looked like.  If you only knew some of the beautiful things Courtney has shared with us.



Quick update
November 21, 2009 by BigSis Meg
We have been blessed to have Court with us one more day. Her vitals dropping just slightly. She had some great visitors today and Alyssa made her day. If you could only see the smile she gave today. Kelly is staying with her overnight.



Making special requests
November 22, 2009 by BigSis Meg
These last couple of days have been so special, and moments I will never forget but one who never forgets is Courtney. She has had some particular moments when she has stared to mouth some stories and remember things that bring back memories. She’s still sharp as a tack. Yesterday afternoon she asked for a slice of supreme pizza, and she got it. She even ate half of a breadstick with marinara sauce.  

Kelly stayed all night with her in her room. This morning I got call from Kelly and Court wanted rice crispy treats and I brought it. She heard Scotty made Chicken-n-Dumplins yesterday and she’s asked him to bring her some. Anything for Court!   Courtney has been good spirits, with lots of smiles, although she’s starting to feel some pain. They’ve turned her morphine up to 7mg and her blood pressure is at 86/58. 
Thank you for your continued love and support.



Sunday night
November 22, 2009 by BigSis Meg
Courtney is hanging with us and as always in good spirits. She’s had a lot of special visitors and has had a busy day. Not a lot of resting so I know she’s tired. Her friend Jennifer just left for the day and currently she has Aunt Joan, Nanny, Aunt Jane and Cousin Laura. Mom will be coming down shortly. I am going to spend the night with Court.  She just ate her third rice crispy treat for the day and I’m sure will be resting soon since they increased her morphine to 8mg in the last 30 min. 
Rest Easy my Lil’ Sis. I love you with all my heart!



I’m Alive, I’m home
November 24, 2009 by BigSis Meg
These last few days with Courtney have been some of the most amazing days of my life and I will never forget them. As most of you know, Courtney has been battling her life with Cystic Fibrosis for 26yrs. Courtney resigned from her battle on Friday the 20th and since that day it was like a huge burden was lifted from her. No more anxiety, no more worries, and no more pain.  

I’ve lost a lot of people in my lifetime, more than most do until they are “older”, but this loss has never been so comforting and so bittersweet. These last few days, Courtney has had lots of smiles. She was able to request food she wanted.   We were all surprised when she asked for Mom’s Chicken Chow Mien yesterday, and when she heard Mom was making it for her she mouthed “YES” and made the motion of pulling the elbow to chest with a fist. So cute! She had so much energy yesterday, moving her arms around and mouthing stories, keeping up with everyone. At one point, she acted as if she was bummed and mouthed that she wished someone had a camera, because she wanted her picture taken with Nanny, Aunt Joan, Aunt Jane and Cousin Laura and her friend Courtney Stevens. Thankfully Aunt Joan did have her camera on her and they were able to take her picture one last time.

Mom spent the night with Court last night and at 8AM this morning Courtney requested that Chaplin Ryan come in.  She said she was ready to go home. Mom thought at the time she wanted to go home in Allen, TX. Courtney threw the sheets off her legs as if she was about to get up out of bed. Mom told her you can’t get up. Courtney mouthed, “Yes I can walk now”. Mom covered her back up and got her comfortable. If you only knew that these last couple of months, Courtney has had no energy and unable to walk because of her muscles and legs deteriorating from being in the hospital bed for so long. She couldn’t even lift her legs to get off the bed.

What I’m about to tell you all, is the purpose Courtney was here. The gift to share this with you all is one of the many reasons God created Courtney. This is the shortened version, there is much more…  Around 9AM this morning with the Chaplin, Mom, and our Brother-in-Law in the room all of a sudden Courtney got wide eyed and started waving her arms in the air and mouthing that she was Alive, and Home. She waved her hand and said “Hi Daddy” to our Dad who passed away over 8 years ago. She was being greeted by all the Angels and loved ones who had passed on before her.  She started running with her legs on the bed, making the running motion with her arms along her side.  

She was saying over and over “I”m Alive, I’m home”  Her legs were coming off the bed, which she hasn’t been able to do the last 2 months.  Lindsay arrived and was able see her waving her arms and praying with the Angels around her.  Lindsay said it was like she was already on the other side and they weren’t even in the room.  Kelly, Nanny, Aunt Joan and I arrived just before 10am and they had just given Court some medication to help her sleep. She slowly started to decline.

She slowly closed her eyes and raised her arm over her eyes as if something was very bright. She took her last few breaths and just like that she was gone. There was no pain, no suffering.  It was a very precious morning. Courtney gained her Angel wings at 10:54am.

Thank you all for following Courtney’s story and giving us the strength to get through this. We’ve had so much support from family and friends and this transition has made it easier on us.
Courtney made some final wishes before she left us.  She has asked us to continue to support her Cysters and Fibros and wants our CF Team Cookie’s Monsters to raise $15,000.  

Anything for you Court! She said she wants to wear jeans and a t-shirt at her viewing. She wants everyone to wear her two favorite colors pink or green to her funeral, no black!

Courtney – it’s no surprise to me that you get to go home just before Thanksgiving.  I’m so happy for you and I’m thankful for the time I had with you. You are home with Dad, Poppy and many others who love  you dearly. You are in no pain! You are running the golden streets.  Have fun and we will see you soon!!!  XOXO
PS, Court said no flowers, donations only.  The link to donate is on the blog.
http://www.cff.org/Great_Strides/MeganThomas5889

We are back . . .

Yep, back to the real world again.

This was a dream trip I had envisioned would happen maybe in another couple years. I couldn't wait for the day to take my grandkids to the magical place that is Walt Disney World. The trip was most definitely waiting near the top of my bucket list. But I also knew that timing was everything. The kids had to be ready to ride and experience everything the World had to offer. Which means growing to at least 44" in height. Aaron more than fit the bill, especially since he has lost his fears and willing to ride just about anything and everything now.

Terry and I love going to WDW and always have a great time, just the 2 of us. The last time we took 'kids' was back in 1996 when our kids were 15 and 16. An age where they did have fun but also didn't really want to vacation with the parents anymore. We also chose the worst time of the year to go, JULY. Ugh the heat and humidity were unbearable which made the trip miserable. We vowed never again to go to Florida in the summer.

So why the change and take the kids now? Our timeshare exchange company, RCi, recently added the Disney World properties on their list of exchange options. In the past we exchanged for condos in the Orlando area and rented a car. But we always wanted to stay 'on property' making use of the Disney perks, all inclusive immersion and extensive transportation. We have priced independent WDW vacations on property but they were expensive with a capital E. We just could not justify spending that much when we could exchange just outside WDW property for $169 a week exchange fee instead of $300+ per night. Big difference. Our timeshare exchange has given us many happy, fun trips to WDW with very little expense.

In March, when I heard about the exchange, I immediately got on the phone to RCi. An agent explained that yes we could exchange to WDW, but there was such a demand that a wait list formed and it could be 2 years to actually get an exchange. Perfect I thought, the kiddos would be just about the right age, I added us the wait list.

Fast forward to June, I get a call from RCi. They had a 1 bd villa at the Wilderness Lodge available in Nov. WOOOO HOOOO, that was our first choice, how could we turn THAT down?!? We accepted and paid our $169 exchange fee for the week. Beats paying the going rate of $425 a night!! Our trip was officially fast tracked. We used frequent flyer miles for airfare, and bought the WDW tickets through the trusty wholesaler we have always bought from. Audrey was a total freebie this go round, in both airfare, eating in the restaurants and park admission.

We had a blast . . . amazingly fun, non stop smiles, forever memories, over a 1,000 photos and beyond exhausting . . . just what we needed in this very stressful year we all have had.

Bucket list has one less entry scratched off. I would say mission accomplished.

Here are of few photos of the Wilderness Lodge.

The last week countdown is on!!

We leave for Walt Disney World one week from today on Nov. 8 . . . Woot!

We are all so excited to revisit the mouse. This is probably Terry's and my 8th (?) visit, we always have a great time. Jen last visited when she was 16, so 13 years ago. Lots of changes since then. And the grandkiddos? THEIR FIRST VISIT!!!

Yeee Hawww!! One more thing scratched off my bucket list. Hopefully I'll be able to take them again in a couple years when they will remember it better. But no matter, I'll take this visit. We plan on taking lots of pictures, planning to buy them each an official autograph book for character signings, and they can each pick out a Disney Christmas ornament for their tree. This is a tradition we started way back when, and every visit since. We just love our Disney ornaments.

We finally told Aaron we were going in August, when we received our free WDW planning DVD in the mail. We had him watch it several times, and he'd say, "I wanna go there some day." It took everything in us to not tell him until the timing was right. We finally told him but it really didn't sink in. How is a 4 yo supposed to understand? To make it seem more realistic that yes, we really are going, I made him a 30 day countdown calendar. From Oct 8 to Nov 8, he puts a sticker on that day each morning first thing when he wakes up. He runs down the stairs, to place his sticker. And then, like clockwork, he carefully counts the days until we leave. This has been an excellent way for him to learn not only his calendar skills, but also practice counting, and patience. Good thing Halloween was the last weekend before we leave. It gave him something else to look forward to.



Plus this will be their first airplane flights as well. We've tried to explain how it works, going to the airport, boarding the plane, but not sure he gets it yet. Oh heck, it was hard enough to explain our hotel room to him, since he's never done that either. Lots of firsts for this vacation and just glad I'm able to share it with both of them. When I ask Audrey, "do you want to go to Disney World?" She just giggles. But she sure knows Disneyland and gets excited every time we go now, so I know she'll love it too.

So tomorrow, the sticker goes on Nov 2 with only 6 more days to go.

I don't know who is more excited, me or Aaron.

Sprung and Spry

Well a 10 day hospital stay and 5 more days of IVs at home, I'm good to go. I pulled the needle after this mornings last dose. I feel so much better than even at my August discharge. The 2 drug combo I was on this time Cefepime and minocycline really kicked butt.

I mentally prepared for my hospital stay to last 14 days in house. But the swine flu was going around the hospital. It was decided that the risk staying in house was greater than if I was sent home. Infection control on our hospital floor was increased, anyone entering the room had to wear the special N95 respiratory mask. The nurses absolutely hate wearing them because they are suffocating to breathe in while wearing. They entered our rooms, did whatever they had to do quickly, and made a speedy exit.

Two of my CF friends who go to my clinic, were admitted to the hospital at the same time as me, both with swine flu. They were both very sick and miserable. I decided on discharge that I didn't even want to go there, that I would seek out the vaccine as soon as available.

The LA county public health dept started their H1N1 free vaccine clinics the week I came home. I bit the bullet and decided to try to get it on my own rather than wait for my clinic to have it available. They still had no ETA when they would have them. On Sat, I arrived at 7:30 am for a 10am clinic opening. The wait was in a Whittier park, which was nice. The line swelled to 5,000 people in no time at all. I kept my distance from people and wore my mask when I went inside to finally get my poke. So far I've had no side affects at all. My concern of course, was to try to have some immunities built up before we leave on vacation in 2 weeks. The timing couldn't have been better. Now I  just to need to wait and see if it really keeps me from catching it. : )

So soon?

Well, I wish it weren't true, but it is . . . I'm back in the hospital. Between 2 back to back colds, no rest, lots of stress, here I am again, less than 2 months since the last admit. I think this is the fastest turn around I've ever had. I'm expecting my Docs to keep me 'in' for the entire 2 weeks, to make sure I have a chance to rest my immune system from every day life. In a way, I'm not going to push for the second week on home IVs, because I know I need to recoup.

Besides, we are leaving on vacation in 3 weeks and I certainly want to be in tip top shape for all the fun we're going to have. We are taking Jen and the kids to Disney World on Nov. 8 - Nov. 16. We all have had a stressful year and NEED a break. Even though we really can't afford it, we decided since we sold the cabin, we'll use funds from the sale to finance our fun. Woo hoo, another wish scratched off my bucket list.

I just heard some awesome news this morning. A CF friend of mine, Katie who also goes to USC, got her call last night. The call that will forever change her life. She has been on the lung transplant list for 2 years. A match was made last night, and she headed to the hospital at 2am this morning. Late last night I heard the helicopter coming in and land on the roof. In my mind, I thought to myself, someone is getting a transplant of some sort. USC does transplants of every organ possible. Little did I know at the time, that delivery was more than likely Katie's lungs.

I have chills just knowing that she is 6 floors below me, getting her new lease on life. She is 28 and engaged to be married. I pray that Katie has a successful surgery, speedy recovery, and a great life to look forward to. I also want to say a prayer for the donor family for the loss of their loved one. They made the unselfish decision to give someone else life. And Katie said it best herself on her FB page as she was on her way to the hospital:

"Please pray for the family that has just lost their loved one. Our joy is their sadness."

Godspeed Katie!

The End of Another Chapter

My life has been full of chapters . . . some have been great and others not so good. I certainly have enough to fill a book, just not sure how interesting it would be. I always look back at a closed chapter, with memories, be it good or bad. And hopefully, that whatever has just been closed, I learn something valuable from the experience and move on.

This year has been a financial nightmare for us. Terry has had no steady work since last November 08. Little bits here and there have trickled in, but clearly not enough to even cover the most basic of expenses. When May rolled around and the usual busy work period yielded no work for another month, we knew it was time to take action. Something we figured may be in our near future, but now we knew. 

Time to sell our cabin, our mountain home in Lake Arrowhead.

When my Mom passed away almost 10 years ago, (yikes has it been that long?: ( ), I got a small cash inheritance from the sale of her home. We decided to not spend a dime and instead invest the money. My Mom worked hard for her money and I wanted to make sure I gave her memory genuine validity, by doing what she did, invest it. And what better way to invest, than in real estate. 

We decided that we wanted a mountain getaway, close enough to home, yet far enough from everyday reality, to seem like we were away on vacation. We looked in Big Bear Mtn and in Lake Arrowhead. Big Bear was just far enough away @ 2 1/2  hours on a good day with no traffic. Lake Arrowhead, on the other hand, was 90 minutes door to door. We scoured the internet and came across several properties we wanted to see. Our cabin was on the list, even though it was a little more than we wanted to spend. However, being built in 1991, it was fairly new and needed no work. So many properties were fixer uppers, and that would have defeated out purpose of having a relaxing home away from home.

The minute we stepped foot in the door of our place for the first look, we knew that this was it, the cabin of our future. We still looked at other places, but our hearts kept going back to the little home on the corner lot, with a stream running along side. We justified to ourselves that the price and excellent condition was worth our peace of mind to just come up, and enjoy. We made our offer and it was accepted!! We were in heaven, knowing we had our own slice of heaven.

I poured my heart and soul into decorating every room to look, cabin-y. I sewed curtains, pillows, quilts, recovered chair cushions, added snowmen, bear and deer accents. Forest green, maroon and navy blue was the common color theme throughout. I found an old snow sled and a set of deer horns at garage sales and hung them on the wall. I also found an old army trunk, painted it and decopaged whimsical snowmen pictures on top, to be used as our firewood box/coffee table. This place was us, the first place Terry and I bought together as ours.

We made too many trips to count over the years, thoroughly enjoying our little cabin. We had many a lazy weekend with no TVs or computers. Just enjoying the nature, feeding our squirrelies, critters and birds, sitting on the deck watching the ginormous trees blow gently in the wind. We enjoyed trekking over to the old Santa's Village site, where the summer weekends exploded with concerts, picnicing in the meadow as we listened to the Beatles and the Stones. We loved walking into the Village and the Lake area, soaking up the mountain atmosphere. And grocery shopping at Jensens for the best homemade breads and warm tortillas. When my lungs still allowed, we took long walks through our neighborhood and the forested roads. Winter brought on a whole new magical experience, with snow and freezing days and nights. Glorious times sitting by the huge fireplace watching snowflakes gently, pile on our deck. And nothing was more satisfying than going to sleep at night and waking up to a foot of snow. How we loved looking out our windows at the beautiful snowy landscape. *sniff* 

POP!!!

Back to reality . . . the dream ends. Between no money coming in and my lungs not being able to handle the 5,700' altitude anymore, we knew it was time. We called the real estate agent we bought the house from over 9 years ago, to schedule an appt. We ended up listing that day in May to see what happens. The market up there is flooded with foreclosures, people losing or dumping their 2nd homes. Our asking price was no where near where we thought it would be. *sigh*

June and July brought in 2 ridiculously, low offers. We pretty much said "no thanks." I'd rather keep it and rent it out than sell for 'that'. We're not that desperate. We made a few trips up to gradually move out personal items, knowing the inevitable would happen eventually. Finally a decent offer came in mid August. We settled on a price and entered escrow. The last week of September we went up for the last time, to move out the remaining items. We sold it furnished for the most part, except for a few upfront must haves, like the army trunk, Terry wanted it for his office. 

As we finished loading up the last box and took one last look around, I started crying like a baby. Terry and I hugged, in the somewhat empty living room, as time stood still. I couldn't believe this would be our last time in 'our cabin'. 

THIS WAS OUR PLACE, OUR HOME. We closed and locked the door for the last time. I felt like it was a death, the death of a family member and of time treasured.

Escrow closed today. Our cabin is no longer ours.

It hurts like hell to have to do something you don't want to do.

We will forever miss our little cabin in the woods and everything it represented in our lives. It will always be our cabin in our hearts and memories. 

Time to mourn and move on.

Time to let someone else enjoy 'our cabin' as much as we did.