Eight & Seventeen...

December 10th I celebrated 8 years breathing with my angel lungs. It's crazy to be so healthy so many years out...with the statistics for Cepacia and transplants in just feeling really blessed. 

Bryan threw me a nice little party & surprised me with a beautiful anniversary ring. I'm so lucky to have such a loving & supportive spouse. 

Seventeen...next week Bryan and I will celebrate our 17th wedding anniversary!! Now that's incredible. I remember when I was young, growing up with CF, I didn't expect I would live to be an adult. It's amazing that not only did I live to be an adult, but I've been married and enjoyed 17 years with my best friend, my biggest supporter, my reason to keep fighting! 

Life is good!! I'm healthy, I'm happy, and everything that I've been through in life has molded me into the person I am today. I am very blessed!! 

Things on my mind....

Okay so I have my music playing and I can sink into my thoughts....

So many nights I lay awake and I have thoughts bombarding my head that sleep is far from being prioritized. In fact if it wasn't for my sleep aids I may never waste another second in deep slumber, but only in deep thought. I think about things simple like 'what do I have to do tomorrow'...to deep compelling thoughts like 'what will be the expiration date of my donor lungs, how terrified will I be enduring rejection, watching Bryan face the reality of the possibility of losing me again, the suffering'...i fear losing the wonderful life I've been loving the last 7+ years. It's overwhelming and it's inevitable to have these thoughts. It's the hard truth of the decision I made 7+ years ago when I got my double lung transplant. I feel like my life has been a dream/a fairy tale in fact and I fear the day it comes to an end. I just never in my life imagined I would ever have a life like I have and it's a beautiful gift...one of the most treasured gifts I've ever received. 

I listen to myself breathe in the quiet darkness at night and the sound of the air moving through my donor's lungs is a lullaby reminding me that she lives through me and that I live becaue of her. A soft and steady sound that bonds us together through life and death, I have a rare opportunity to share a part of someone who I will never meet on earth...it's a strange relationship that although it may seem one sided, I feel her and I know she watches over me...I mean us. Organs are just a physical body part that serves a purpose...but it's so extremely more complicated than that.  There aren't words to describe how deep these thoughts run through my soul to allow anyone to understand...it's personal to me and me alone. 

I have recently lost a very close CF Cyster...it was painful to know she was no longer on earth and would be so missed...my heart broke for her faithful and wonderful husband who was by her side till the end. My heart broke...but not just for him, but for the thoughts I could not push out of my mind of my husband facing the same loss, heartbreak, and loneliness. I love him so much the thought of his pains hurts so deep I cannot bring myself to believe it real. But it became very real when I said goodbye to my beautiful friend. Her husband has found comfort, love and happiness with another woman and I'm happy for him, but again my thoughts are wandering to my one true love...will he find new love, if not how long will he be alone and will he ever be the same person. I do find joy in the thought that if he does find new love perhaps she can make him the father I always wish I could have but I was never able to. 

There's a lot of guilt of feeling like I cheated him from having a family like his siblings all have experienced. It has alienated us some from family & friends. We are misunderstood and unintentionally left out due to being "childless" when others our age have kids as young as infants to highschoolers. We are not selfishly choosing to not have kids...but we can't because I am broken in many ways. But Bryans loves me broken and pieced back together again with spare parts, scars inside and out and the knowledge that our fairy tale life is no real fairy tail....it's been hard and it continues to be hard. We just have to be happy that we have pages still left to write our story in. 

My thoughts often wonder to my childhood dreams and aspirations of becoming an actress...I remember feeling like I could do anything even become an award winning, inspirational famous actress. Such BIG dreams for a tiny young girl. I was confident nothing could stop me from doing anything I put my mind to...I'm glad I have that younger version of me still hiding inside me and pushes me to pursue other dreams and take on things I try to convince myself are impossible. 

I wish I did more for others...every day I could do more. I'm selfish & I'm not afraid to admit it. I pray that someday I can live up to become the person I hope to become. 

I am a good person...I try hard to be that. I love God and strive to live my life pleasing unto him...I believe I chose my life and my trials knowing the person they would help me become...that is how I can look at all my trials, tribulations, pain, suffering and Be grateful. I don't wish it away because then I would have missed out on the beautiful, happy, touching, spiritual, amazing experiences and people I have had throughout my life story. 

This is just a glimpse into my thoughts...there's so much more...so very much more! 

Forgetting CF

The farther out from my transplant I get the harder it is to 'remember' what life was like when I had "CF LUNGS". The memories are still there. . . but the pain and frustration and sadness are almost gone. It seems as though I have memories in my head that somehow don't seem like mine. They feel more like a dream or a movie I watched at a young age and now I can only remember the good parts & the scary parts but not all the in between stuff. I feel emotionally numb to what life was like. The hospital stays. . .every 4-6 months since I was 10 years old, they seem like they just weren't real. My life is just not like that anymore. My PFT's are something I no longer dread, although now I'm scared to do them for a different reason.

I feel like I don't relate to Cystic Fibrosis patients much anymore. I have compassion and understanding but I have also lived with the CF outlook on life. . .and I see it for what it really is. Not saying that I am pessimistic about it at all, but it's similar to watching a movie that has a plot twist at the end after you have already seen it before. The twist is just so obvious the second time you watch it. It can be so hard to not give the plot twist away to others who haven't seen the movie yet. Does that analagy make sense? I just know how CF ends. I know the harsh, raw, horrifying truth of what is inevitable. . . facing reality comes with some consequence, the truth hurts and believe me when the wall of denial I had built around myself and CF crumbled it left me feeling alone and scared for the first time in my life. I had to learn how to pick up the pieces and face the truth that Cystic Fibrosis is an unstoppable terminal disease. My lungs were "diseased". I had to accept that and brush myself off, get up and say "okay, then what do I need to do next". No looking back for excuses or to feel guilt for missing a few treatments or to blame myself for what was happening to my body because at that point I knew I no longer had to feel like I could control CF, it was what it was and the only way to go was forward.

I am blessed with the strong, powerful, upbeat, optimistic personality that most CF patients seem to also be blessed with and that will never change. I must say that I believed with my heart and soul that if I did my treatments, and exercised and did everything possible I could BEAT CF, and I did for 28 years. . .but when my body had finally became too weakened by the disease, it was at that moment before I was put on a ventilator that I surrendered to the torture that CF caused my frail body. It slowly stole my physical strength but it will never take my will to keep fighting. I knew that when I could not bear my burden any longer it would be taken from me. I carried it with strength and willingness for as long as I physically could and in the last few hours of my consciousnesses I had to surrender, I surrendered my will and put my life in Gods hands. That is when my burden was lifted and it was made light.

Every single person in this world is carrying their burden and we are made stronger as we do so and we are capable of doing amazing things and grow into amazing people. We can inspire, help, teach and be a beacon of hope in life when others have none. . .we have enough hope to share it with them.

My life with CF was my prelude to my new life. Without my prelude I wouldn't be creating the symphony of life I am now. I wouldn't appreciate every tiny miracle that is a gift to me. Without remembering what life was like I wouldn't believe that all the things I have now in my life are so wonderful. It's good to remember, it's good to be able to see the twist in the story and it's good to be able to learn from them & combine all those components in my lifetime to overcome the pain so I can create more chapters of my life story.

Believe there is hope. . .believe you can beat CF. . .and when your honorable fight starts coming to an end, find it in yourself to keep believing that life with CF can and will get better. . .and perhaps like me it will mean you'll have a new fight towards getting new lungs. But NEVER lose HOPE, that was my armor through it all.

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