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