My Dear Alan

My dearest Alan,


Today (5/3/12) marks 3 weeks that you're gone and I've been struggling with what to write to you.
You were/are by far one of the most amazing people I've ever been lucky enough to call a friend.
I will forever cherish that day we met (in person) May 25th, 2011. (even though Alli couldn't come =(...)
It was less than one year ago, and even though it was raining and my mom felt the need to tour an old church, we still had fun. And of course, who could forget that terrifying ride in the Ferris-wheel, it was bad enough that I'm afraid of heights, plus the rain didn't help. But it was time together and I will never forget that day.


And when I think of you
I will forever think of those skype chats we had for days at a time.
I will forever think of how loyal a friend, how devoted a husband to Alli, and how pure at heart you were.
I will think of all those times you were there for me, no matter what hour. You listened to what I had to say, never once did you judge me. I could tell you things I couldn't tell anyone else and know that it was safe.
I will forever think of the laughs we shared.
I will forever think of you when I hear a P!nk song. (especially "Perfect")

I know that my life, will never be the same.


You left a hole in my heart that will never be repaired. And while I am comforted to know you are finally at peace, it still hurts to know you're gone.


I love you more than you know and I miss you every day.


My Shiny.
My Best Friend.
My Hero.
My Alan. <3

Breathe Easy

June 24th, 1984 - April 12th, 2012

Breathing Hope for Alan -facebook page

Donate to Breathing Hope for Alan

More stuff from my brain

I just have a few things on my mind.

figured I'd write them somewhere.

first off. Mebsie is here, for my birthday. On Monday we went up to Conneticut again, to see Melissa & Emily. I know I had said that I wasn't going to go back up, however Melissa had to be moved to a facility because the home care nurses were unable to control her pain. The facility is much closer to me (1 1/2hrs) and its also about 10mins from Emily. So we had a nice day.

yesterday was my 23rd birthday, meaning I am now 21yrs past expiration date, lol. (I was not supposed to live to see 2) I had a pacemaker check in the morning, battery has 1-8 months left on it. The rest of the day I spent in bed. I was super cranky, and not feeling well. I did get a bunch of camera accessories & a gift card for a massage, which is awesome.

I leave for the condo on April 3rd, I'm excited to get out of here again. I'm really wanting to go on a road trip but right now my mom doesn't want me to go. I'm frustrated. I hate not doing anything with my life, but I've been told I'm not mentally stable enough to survive in the real world yet.


there is more, which I'll get back to later....

Real Life

for part of the past 2 weeks I've done things that normal people do.
went to a bar/karaoke, a party, hung out with friends. I do wish I had other friends that lived near me. I'd love do do things like this more often. *foreveralone*

one of the hardest things I've had to do

I know I say this a lot, but this is one of the hardest things I had to do...

As many of you know, one of my dearest friends Melissa Hauser is on hospice. (end of life home care) 2 weeks ago yesterday we were talking and I asked her if she thought she would make it to Monday (which would be 3 days later) and her reply was "I'm trying hun, I'm trying".
the next morning (saturday) I backed up my shit, and got in my car, and drove to her. I spent that day with her before returning to Emily's house, which is where I was spending my nights. The next few days I made the drive from Cheshire to Vernon & back to visit Melissa. Then I decided to give the family more alone time and started going only a few days a week. It has now been exactly 2 weeks since I got here, and true to form, Melissa is still hanging on. Unfortunately I need to go home on Monday. It breaks my heart, but I have 10 doctor appointments to make, and go to, before April 3rd. I also may be getting surgery during this time as well. It has also been 3 weeks since I've seen my mom, and she is getting VERY anxious. Yesterday I said my goodbyes to Melissa, for the last time. We hugged for a long time. It was so hard, walking out that door and knowing I'd never be back. I'd never see her again. I'd never see her sweet and loving dog, Abby, again. We would never make our heart hands again. It felt so wrong, I felt so cold, just walking down her driveway. I sat in my car, just looking at her house, crying, for a good 15mins before I drove away, for the last time. Now I know, Melissa is not gone yet, however, I will not be back. It is a 3+ hour drive, and it makes my mom very nervous. I will most likely drive up for the service, when that time comes. But that will be different, I will not be driving up for a visit with my dear friend, I will be driving up to mourn her. Melissa is an amazing friend, and it kills me that I cant be there with her. I love you Melissa.






Hand Hearts Forever <3



Saying Goodbye

Update on my life (cindy)

I really don't know where to start.
I was sick from Thanksgiving till New Years.
in and out of the hospital a few times.
most of you already know the details on my hospital stays so I'm not going to go into that. My last hospital stay ended early January, after being discharged I basically moved into the ICU waiting room at Columbia Presbyterian in NYC. I had to be with Cindy. I spent countless days and nights at her bedside. tearing my heart apart by the minuet. watching my best friend go through this. it was more then I can even explain.
I always imagined she'd get her lungs in time. I wasn't prepared for this. I......I will get back to this blog later.

TO BE CONTINUED...


Resuming:

I always thought she'd get her lungs. losing Cindy was never an option. never a possibility. I knew she had CF, and I knew her life would be shortened. but it was not supposed to happen now. she was supposed to get those lungs. she SHOULD have gotten those lungs. I blame the Hospital in so many ways and due to my emotions, I am going to write them all out.

: They waited FAR TOO LONG to list her, they kept giving her excuse after excuse. they waited until she was on her death bed before a doctor from St.Joe's called and told them to get their fuckin acts together.
once listed she got a few false alarm calls. One of those calls, SHOULD have been hers. The donor family consented to organ donation, but the decided they didn't want to donate the lungs. for God knows what reason. I was beyond furious. once she was in the hospital, dying, they chose to put her on ECMO, and put in a TRACH to help her breathe. Cindles began having seizures and was taking a long time to wake from sedation. so the ingenious hospital decided she was no longer fit for transplant due to minimal brain activity. Even though the girl was still squeezing my hand, and saying that she wanted the transplant.


I was not prepared for this. Seeing her that way. Being there, Holding her hand, crying with her family.
hugs. prayers. tears. whispers. love.

I spent 2hrs talking to her from 4am-6am the day we lost her. She shared some of her wishes, and planning things we would do in her honor.
holding her hand and watching her slip away. was the hardest expirence of my life.
I'll never forget her. Ever.

Breathe Easy Cinthia
8/17/89-1/12/12

This Losing Battle - poem

My heart has been yanked from my chest.
My lungs struggle to take a breath.
My vision fades, I drift away.

My mind is gone, its in a trance.
There are spoken words I cant comprehend.

The world spins fast around me.
I crumble.
Something deep inside me cracks, my soul shouting, "just let go".
I know I should, there is nothing left.

but then your voice comes through the wind.
Convincing me to try again.

I stand once more, to face the world.
And I fight this losing battle.

This fight is all I've ever known.
The war is something I call home.

but I won't give in, I won't say "quit"
not until the pieces fit.

and if they do, if that time comes,
I'll march to paradise by the sound of drums.

When my mission is complete, and my journey through,
With wings blazing, I'll watch over you.

A Heavy Heart

As many of you know I lost an amazing friend last night.
a friend who has touched the hearts and changed the lives of literally thousands of people. The person I'm talking about is of course, the beautiful and courageous Rachael Wakefield

Rachael's fight was a long one. She has been ill since she was 13. and has been on oxygen since then. She fought hard with her lungs never letting them defeat her. on March 11th, 2010 Rachael finally received her double lung transplant, the gift she'd so desperately needed. It was a difficult recovery, but as with everything, Rachy overcame and was 'healthy' at last. Unfortunately, it didn't last. One side of Rachael's diaphragm became paralyzed due to her being on the ventilator for so long after surgery, this paired with the immunosurpressants made her very susceptible to respiratory infections, and pneumonia. In addition to this, Rachy also developed Primary Pulmonary Hypertension.


Rachy fought so very hard throughout her 23 years of life. Her smile and spirit were contagious. My prayer had been that as her time came she would float to Heaven peacefully as the angel she already was. And she did. And I am thankful that she is no longer struggling to breathe, or fighting off pain. I'm comforted knowing that she is at peace. But I will never stop missing her. She was a true gift to this world. Her bravery will not be soon forgotten. Her spirit and her legacy will live on. I was so honored to call her a friend and proud to have met her. The sky shines brighter now as the heavens have gained a most brilliant star.

Breathe Easy, Fly Free, Rest Peacefully.
Rachael L Wakefield


Live Life then Give Life.
Be an Organ Donor.


Links:
Rachael's Legacy
News Tribute to Rachy












http://www.youtube.com/watch?v=gbQfBupI2Cg