Grateful

Screen Shot 2014-09-01 at 5.47.52 PM

I am so deeply grateful to be celebrating my fourth “transplantaversary” today. Yesterday marks the day I entered surgery to receive a new liver, and today marks the day that I awoke for the first time with new life within me.

Without my gift of life, I wouldn’t have received the opportunity to love again, complete my education, visit new countries across the world, become a godmother, meet new friends, touch more lives, or savor every ordinary day.

The journey has – at times – been treacherous and almost too much to bear. There has been fear and pain. But today, I live a beautiful, charmed life that has only been possible due to the generous gift of my organ donor and his family and the support of my family, friend, and even strangers around the world.  There aren’t enough words to express my gratitude.

Please consider signing up to be an organ donor, if you’re not already. It’s a pretty simple, yet empowering thing.  Just go to this website and sign up. Next time you renew your license, make sure that they put the tiny heart symbol on it, signifying your wishes. And most importantly, tell your family so they can authorize it when you’re not longer able to do so yourself.  120,000 people are waiting for what a lot of us take for granted.  18 of them die each day because there aren’t enough organ donors.  By signing up to be a donor, you can save up to 8 lives and heal up to 50.  Once you die, you won’t need any of your organs anymore, so why not share them with someone less fortunate than you? Think about it…  Feel free to contact me with any questions you may have.

With love and gratitude,

Amanda

Screen Shot 2014-09-01 at 5.48.08 PM

Leaving a legacy

This week, my uncle went home to be with Jesus.  I want to tell you a little about him and how he played a part in my story, and now in the story of so many others.

God must have needed a very loving angel when he called my uncle home. We may say his life was too short or we want to keep him here to love or to do more good, but God’s ways are higher than ours. Uncle Kirk is going to touch more lives for our Lord through his death as complete strangers learn about his legacy and the life he lived.

I was his second niece and flower girl, the little girl who would come over and entertain his girls and play with his dogs.  I will always remember his hugs and devotion to his family. He loved so many people and so many things. He brought our family a lot of joy.

In remembrance of my uncle’s love and humility, I want to write about something that is special to both of us. Uncle Kirk and I are the only people in our family who now truly, personally understand the gift of organ donation through being a recipients or donor.

During the summer of 2010 while I was waiting for a life-saving liver transplant, I rallied to raise money for a fundraiser for Lifebanc, our area’s organ donation and procurement agency. Without any asking, Uncle Kirk took it upon himself to personally raise hundreds and hundreds of dollars for my team. At the day of the fundraiser, Uncle Kirk wanted to sign up to be an organ donor. I had no idea at the time.

At the hospital this week, shocked at the sudden state of my uncle, I found out about his decision, and I was moved.

How like my Uncle Kirk was it to want to be an organ donor? To want to use his healthy body to someday save and change the lives of dozens of strangers? Kind of predictable in hindsight.

He got his wish, and I’m in humble awe of how my story helped move him to that decision. Today, so many people are beginning their new lives all because of my uncle and his giving heart.

As a 2-year liver recipient, I cannot even express what a gift Uncle Kirk has given to not just one person, but so many. A dad could have sight today or a young boy have a new, beating heart. Maybe like my story, a college student and an infant are sharing a strong, healthy liver. Perhaps a burned, injured soldier has a chance to look normal again, and a woman on the verge of death is breathing through pure, healthy lungs.

My uncle made a difference every single day, but I want everyone reading these words to know that he will continue to make a difference every single day…. Literally.

He will live on and make a difference through his legacy, without a doubt, but you all know that. I want you to know and forever remember that he gifted his body to dozens of people and his love is literally living on all over the nation. And it will continue to, just like the memories in our hearts.

Thank you for loving my uncle and my family, and thank you, Uncle Kirk, for leaving a beautiful legacy of love.  You will never be forgotten, and you are living on through your death.  In heaven and on this earth.

Liver Mamas

“My name is Kai.  My last name is Fairy Princess!” she’ll tell you.  She’s a happy, spunky preschooler.  You’d never know that when she was 4 months old, Kai received a liver transplant because she had biliary atresia.  Her daddy donated part of his to her, saving her life.  Read About Kai on her mom’s blog to get a picture of what a little girl with a life illness is like.  Seemingly healthy on the outside but living a life just like I did at her age – adjusting normal to mean meds, hospitals, tests, procedures.  Growing up thinking that is normal.  Oh, to be that innocent again.  To be too young to realize that your normal is not normal.  Stay young, sweet Kai.  Stay young.

Jasmine, Kai’s mother, keeps a beautiful blog chronicling her daughter’s journey.  I asked if I could share one of my favorite posts of hers, and she gave me permission.  I think everyone needs to understand what mothers/fathers/parents of “sick kids” have to go through.  Now at 24, I’m really realizing that it wasn’t only me suffering for all of these years.  It must have been hell for my parents.  I wonder if some days still are hell for them.  None of us signed up for this, but together, we draw strength, and we get through whatever is coming up next.  I hope you enjoy this post by Jasmine and visit her sweet blog.  I would love to meet the Hollingsworth family one day and give Kai a big hug.

Watch this sweet video of Kai…

Now without further ado, here is “Once a Liver Mama, Always a Liver Mama” by Jasmine Hollingsworth.  I dedicate this to my Liver Mama – you know you’re not alone.  Thank you for always fighting for me and for never leaving my side.  Only a few months until you’ll be a Liver Mama of 20 years.  I love you, Mom.  I wish you could be some other kind of mama, but I’m glad I was blessed with you.  I can’t imagine going through these years with anyone else by my side for every single moment of fear, all of the pain, and even the bright beacons of hope.  We have a unique relationship because of the battles we’ve fought hand in hand for 19 years, and I treasure you all the more for it.

As I sit and keep a distant, online vigil for a baby and a family I have never met, I am forced to reflect.
 
Liver Mommas: We support each other. We share our stories, our joy, our pain, our disappointments, our triumphs, our hope, our advice… But, most of all, we share the experience of having a child with a life-threatening liver disease, more often than not, leading to transplant and the life-long trials and complications that come with that.
 
When someone announces “THE call has come; a match has been found!” We rejoice. Those of us who have been through transplant feel the excitement, the anxiety and the rush of conflicting emotions that we remember from our own experience. Those who have not, I imagine, feel the excitement and hope, fear and longing that goes with the waiting and watching your child grow more ill. 
 
When we hear “There are complications, we need prayers!” We bow our heads and fervently whisper words of love and hope to be carried to heaven, knowing the fear and the way time freezes as you wait to hear that, hopefully, everything will be okay.
 
Sometimes, with a profound sadness that cannot be expressed, we receive the devestating news that a tiny spirit was too great for this earthly world and was called to heaven. Those of us who have never experienced this have a mixture of emotion… grief for the life lost and the family, a desire to reach out to comfort where we know there can be none, a gripping fear in the knowledge that our story could have followed the same path (and maybe still could), guilt that we were “the lucky ones”, and a renewed appreciation for the life of our own children and each day we are blessed to spend with them.  
 
To those of you waiting, we know it seems endless. We remember the hope and we hope with you. To those of you recovering, it’s a long road, but you and your child will get there. One day you will look back at how far you have come and marvel at all that has been accomplished. To those of you who have come out pink and rosy on the other side, we celebrate and cherish each day with you, knowing that tomorrow could bring new challenges and fears. To those of you who have experienced the loss of your precious baby, I have no words of comfort; saying that I’m sorry for your loss does not even begin to adequately cover the depth of my empathy. 
 
I can say this, though: Once a Liver Momma, always a Liver Momma.

Fear of flying / Refinement

Today, I’m sitting in my hospital bed thinking and wondering, dreaming and hoping.  I’ve come up with an idea, a proposition… Bear with me as I get there.

I suppose it’s like the fear of flying.

See, airports aren’t scary, but for some people they facilitate fear just because of their proximity to take offs, landings, and turbulence.

I’m not scared of nighttime, but it facilitates fear because I know bedtime is soon approaching.  It means that soon the people will go away and the quiet will set in.  It means I’ll soon be alone to fend for myself.  Plus, it’s all too clear to me that I don’t sleep well at night, and I have memories of some very traumatic nighttime attacks.

In the same manner, I can say I am not afraid of hospitals, IVs, tests, or doctors.  Even surgery, really.   They just facilitate my deepest fear that I know I’m in over my head with illnesses science can’t even control. Illnesses that prevent me from achieving my dreams, make each day a struggle, and put limits on my life in all sorts of ways. Illnesses that play with my mind, making me worry about where my insurance will come from once I leave my parents’ and what kind of guy would ever want to marry this kind of a disaster. Illnesses that produce hours of phone calls and sorting through bills, dealing with insurance, and filling out forms. Illnesses that easily fill a pillbox full of medications that have taken over my body. Illnesses that self-adjust differently each and every day, illnesses that threaten my ability to make plans.  And ultimately, illnesses that could one day kill me, taking me from the people and the life I so greatly love.  That’s the only thing I truly fear.

But for now, I think maybe my illnesses are like the 6th grade. You have to go – you may not want to but have no choice.  Reluctantly, you bring home new knowledge every day.  You can’t help it.  Fortunately, it makes you a better person as you learn about the world and gain social skills. 

Likewise, I don’t have a choice whether or not to be sick, but I can be grateful knowing at least it’s making me a better person. This lifetime has given me so much love, increased my patience, and given me an empathy most people can never obtain. It’s given me opportunities and experiences that are important to my life and career studying to be a nurse. And most precious to me, it has given me a choice to put my life in the Refiner’s fire as somehow He refines and uses this damaged life for His glory. 

And finally I say, if all of this has been for even one person to know Him, if all of this has been to keep one person afloat, then each and every painful part of it has been worth it.  All 19 years of it.

I can’t get the thought of “Refiner’s fire” out of my mind.  Malachi says,

For He will be like a refiner’s fire. He will sit as a refiner and purifier of silver; he will purify and refine them. 

John Piper states,

He is a refiner’s fire, and that makes all the difference. A refiner’s fire does not destroy indiscriminately like a forest fire. A refiner’s fire does not consume completely like the fire of an incinerator. A refiner’s fire refines. It purifies. It melts down the bar of silver or gold, separates out the impurities that ruin its value, burns them up, and leaves the silver and gold intact. He is like a refiner’s fire.  But it does say, he is like a REFINER’S fire. And therefore this is not merely a word of warning, but a tremendous word of hope. The furnace of affliction in the family of God is always for refinement, never for destruction.

May the crazy miracle of just getting through my days be to the glory of Him who holds my future.  Praise God for the hope of refinement, of our ability to choose to be bettered through the pain and turmoil of this life.

Here it is…

Today is a very special day. 

It’s my 1-year Transplant Anniversary.

12% of us who receive new livers don’t make it to this day, and that in itself is so sobering to me.  I’ve been given a gift and my body has nurtured it to live within.

After what I’ve been through this year, the polarity of the ups and downs, the critical moments I’ve been though, I’m so thankful to have come out alive.  I pray though I’ve been tried through fire, I’ve come forth like gold.

The memories are so strong today.  Waiting for my organ, the surgery and recovery, trying to merge my new and old lives… Often I don’t like my mind to go to these thoughts, but they are a part of my soul.

Today,  I remember sitting at the kitchen table on a summer night, during the waiting period, reading every word in my transplant binder. I can close my eyes and feel each cool saline flush running into my jugular line, the taste of it behind my throat. Then I remember trying to read the lunch menu only to find the words vibrating beyond recognition all because of the high-dose of steroids I was on.  I remember spending two days at the Clinic in an exhilarating whirlwind of exhaustive testing – all to gain UNOS’ approval.   Then there’s the sick feeling I get when I remember leaving my parents and best friend for the last time, not knowing whether or not I would ever see them again.  I cringe to remember a week propped up on pillows, thoughtfully arranged to take away as much pain as possible.  I remember going into a fake diabetes cycle while I was hospitalized after my transplant.  I had to get my blood sugars drawn and usually had to get insulin afterwards.  I was miserable.  I remember great nurses I had during my 3 hospital stays on the transplant unit, like Chrissy, Natasha, and Kat… and a few who are nameless in my memories, but all as much special.  One word: chemo.  I hate reliving Dr. Peter pulling out my drains like snakes coming out of my abdomen.  I can’t even keep up with the ups and downs of my blood counts! The Epstein-Barr virus was a disaster.  I so love Michelle at LabCare.  I can’t stand remembering the pain that no pain pump could control.  I remember going home – so glad to be home but too extremely uncomfortable to be happy about it.

Sigh.

This year, I realized I was stronger than I thought.  I learned God had the final say and everything before that was in His control.  I really, truly suffered – mentally, physically, and emotionally. I watched my family all but break.  I met new friends.  I learned so much.  I pushed myself.  People sacrificed for me.  I grew.  Yes, somehow I grew.

My transplant was a miracle in many ways.  It is first and foremost a beautiful, selfless gift to me from a complete stranger.  I am humble.  I am without words.  I am forever indebted to the family of my donor, whomever, wherever they may be.  On my day of gratitude and celebration, I know they are mourning the one-year anniversary of their son’s accident and death.  That makes this day so bittersweet.  There’s a little dark cloud in my sky that won’t ever go away.  It’s extra dark today.  If only I could know his first name, even if only for my mind’s sake.

It’s so hard to “get” … 

Someone had to die so I could live.

On another note, I’m thankful for this year although I feel a little “at capacity” right now.  I pray God keeps His hand on my life and on my health, and I’m eager to see what comes from here.

Lastly, I owe a thousand “thank yous” to people literally around the world who have shared in this journey.  If you played any part at all – big or small – in my miracle during the past year, please take a thank you for yourself.  I pray I can give back what has been given to me.

So much love,
Amanda

Surgery, Frowny Faces & Pain

Oh, I am not looking forward to tomorrow.  Surgery.  Insert frowny face here.  We have to be at the Clinic at 5am.  Insert another frowny face here.  I’m almost glad it’s scheduled early, though, to get it over with.

Lots of frowny faces in my mind today…  I don’t want to be cut open all over again.  I don’t want to be in ICU, hooked up to half a dozen machines, at some in-between level of consciousness.  I don’t want to be babysat by nurses and residents for a week.  I don’t want to close my eyes and count my staples with my fingers for the first time.  I don’t want a feeding tube.  I don’t want to count the bruises on my arms from all of the IVs.  I really don’t want to miss out on several weeks of life, and I am still aching from the grudge I hold to whoever or whatever caused my transplant surgery and complications.  I don’t want to be medicated to the point where I sob when my mom leaves the room.  I hate wearing hospital gowns.  I don’t like being in major pain without having any more meds to take.  I don’t like not being able to care for myself, be it drying my hair or putting shoes on.  I’m a real person, and this is real stuff that I don’t want to experience again.  In fact, I don’t want anyone to ever experience again.

I think pain happens because we are here.  God – in His all-knowing reasoning – leads us down these paths we don’t want to cross.  Sometimes I think He has to.  We pull back and still He leads.  

Amazing grace, He carries us across the valleys.  We can close our eyes and rest in the palm of His Almighty hand until we get to solid ground.  

Yes, we’ll get there…

Abba, Father.

6 months

6 months.

Are you kidding me?

I was laying in bed last night when it hit me – I passed by my 6 month transplant anniversary (3.1.11) without even noticing.  I’ve been feeling that good.

I’m floating through school, maintaining an amazing social life, volunteering, spending time with my kiddos, being a mommy to Haylie, and so much more.  My DVR is so backlogged and my homework doesn’t get done as often as it should – I’m just so busy diving headfirst into everything with this new life I’ve been given.  I’ve never been able to keep up a pace even remotely close to this.  My mom keeps telling me to slow down, but I can’t.  Everyone is trying to get used to my new life, booking my days full and going, going, going.  It’s amazing to all of us.

I’m so grateful.  I will never forget how life was before, how different it was from today.  It’s a huge part of who and where I am now, and I want to make sure I never lose that.  I think remembering only magnifies the gratitude in my heart.

With that said, I haven’t updated you all in a while and I want to ask you to hold me close to your heart and in your prayers right now:  The surgery and the time before are beginning to come back to me a lot lately.  I told a close friend that the memories are really starting to haunt me.  I’m trying to process them and heal, to give them to the Lord and to move on.  While my life may be going great right now, the intense fear of my story is beginning to hold me back.  I suffered from post-traumatic stress disorder after my childhood illness, and I went through exposure therapy to move past it.  I think that experience has made me fear the potential that any memories like these can have, and I pray God gives me peace before it gets out of control.  

I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.

John 16.33

So six months, wow.

We are so blessed.