Friday, June 13, 2008

Choose To Be

When your life involves Cystic Fibrosis, it also involves death. Unless a CFer dies in another premature way, they will die because of their CF, until a cure is found. And, there's no way to know when.

CF is an unforgiving disease that takes no prisoners. Nobody chooses to be a CFer, and there is no easy road for a CFer, even the most healthy. Death is a harsh reality, and those who choose to ignore it tend to die much younger than they should have. To attempt to prolong death means considering incredibly painful and risky surgeries, medications, and other treatments.

And, it's incredibly unfair and unpredictable. The same common cold that might kill one "healthy" CFer might go unnoticed with another. The same drug that could help prolong one life could irreversibly damage another. Some are diagnosed early and live for 30+ years without any major issues, while others aren't diagnosed until their 30's and die a few months later.

When Haley was born 12 years ago, her parents were probably told that their daughter had a 50/50 chance of living to see her late 20's. She didn't even make it half that far. Yet, there are a few thousand other 12 year old CFers living right now who will survive into their 30's.

In the time we've been at Duke during the past 6 months, no less than three people we have met and known personally at Duke have died because of their CF.

One was in her early 20's, just months removed from her second double lung transplant, the first one having failed her after only a few years.

Another was much older, diagnosed just last year, hoping to work her way onto the transplant list before her body gave out on her.

The human will can only take one so far...unlike most cancer and many other diseases, CF is one that simply cannot be "beaten", and even the most determined person can't do a single thing about it when their body turns against them.

Yet, despite all of this, I have never witnessed a CFer complain. I've never heard a CFer say, "I can't". I've never seen a CFer not be able to smile. I've never known a CFer who didn't love and care for others more than themselves.

Perhaps it's the closeness to death that gives these people so much life. Maybe it's the pain and frustration that causes them to find such joy. All I know is, at the end of the day, they are blessed if they choose to be.

And those of us who know them are as well.

Nate

62 comments:

Andria and Co. said...

This was such a moving post. Thanks for sharing not only your story, but the story of others.

http://andria-and-co.com

Kristen said...

That was very moving. Especially at this time with CF and its horribliness showing its ugly head. Thank you fot that post from a mother whos daugther has CF and knows the long road ahead but we see the blessings.

melissa said...

This post has prompted me to tell you that you and Tricia are such an inspiration. You both clearly know how precious each day of life on this earth is. You and Tricia really embrace the life you have together and are unafraid to face the challenges you've been given. Your unwavering faith in the Lord in the face of these medical issues is amazing. I, for one, am so glad you've chosen to share this journey with all of us. Know that you are both loved by God and by your blog readers! Bless all of you!

Fern said...

Those of you who make the conscious choice to share your lives with those with CF remind me of firefighters who run into burning buildings when everyone else is turning away to run the opposite direction. You put your hearts at risk as firefighters put their lives at risk. In the process, you must reap such rewards. Bless courageous people like you and Tricia.

careysue said...

Thank you Nate, from a mother of a son with cf.

God bless you and your family.

Kerry said...

Well said, Nathan. Thank you for sharing sooo much with everyone. It means so much to me..... It has made me not feel sooo alone. Thanks from a sister of a sister who has CF and is waiting for a double lung tranplant.

The Stevens said...

Powerful

Paul and Christy said...

That is an awesome post Nathan. You get it. I had cancer and that is the way I had to think. We are all completely just blown away by Tricia and her zest (only word I could think of, doesn't really begin to describe it) for life. I also feel like she is blessed to have you. It would be easy to cop out sometimes. You are involved and part of the process. I totally thank God daily for you, Gwyneth, Agnes, Tricia's other family, Rick, Gail and your family(I almost forgot the dog and cat). It is always a blessing to have a cheering section. YOU ALL ROCK!!! Give Tricia a big Way to Go for getting today done from KY.

LisaS said...

Thank you so much for your post and for your blog. My daughter's best friend has CF and I really never understood the depth of what she goes through until I started reading your blog. I have directed so many people to your blog this year as our school has held a fundraiser for CF in Olivia's honor. Thank you so much for bringing this disease to the attention of so many people. I know that they have been blessed as much as I have. I am praying for you and your family!

beanieb said...

speaking of smiles and joy- that is exactly what eminates from Tricia's smiles- JOY! You can just see the sparkle and love of life in her eyes. She is beautiful inside and out. She is a very lucky lady to have such an awesome husband to stand by her side. Gwyneth is just as blessed with such wonderful, special parents. Praying for a peaceful night, a quick diagnosis and getting on the road to recovery again. Sleep tight Lawrensons.

ttulizzy said...

Beautiful. Thanks for sharing.

Rebecca said...

Hugs...

marcia said...

Beautiful tribute to all who have lived with this disease, and all who have lived it with them, Nate!

Beebe said...

WOW! You are such a great person. I really enjoy all you blogging. I am prayying continually for your family. God Bless

Marsmile said...

Gosh, that was very very touching, Nate.

I read about Haley and it made me tear up. It has to be sooo frustrating and difficult to deal with the ups and downs of CF and how the disease can just take away one's life regardless of all the fighting and determination. People with this disease have got to be sooo brave and yes, the support from families, friends, doctors, etc. help greatly.

So sad... but as you would say, we have to trust in God and he will take care of us all.

Thank you for sharing others' stories as well as your own perspectives.

Marissa

JoythruHisGrace said...

Wow! Beautifully written, Nate. Tricia's life and what I've learned about her, mostly through you, continues to inspire me on a daily basis. She inspires me to live life to the fullest, to be joyful and thankful, to love...I could go on and on. Thank you for writing this.

jamie said...

Heroes of the spirit. That's what these folks are. Beautiful and thoughtful post.
God Bless
Jamie in Texas

Katelyn said...

Thank you.

Jennifer said...

very, very moving. I had to finish reading this with tears in my eyes. You are an excellent writer Nate. Thanks for all the 'extra' information that you give all of us. It means a lot that you add this extra information.

Prayers from GA

Julie said...

Wow! Poignant... Beautiful...
Thankyou.
Still praying...
Julie
Moonta, S Aust

marie/nhc said...

The first time I met Tricia, I knew she was an extraordinary person--that was even before I found out about her CF.
I'm awed by the reflection of Christ that I see in both of you and your families.
You give hope to people that are going through horribly painful situations that they too can receive strength, comfort and peace from the Almighty God that you love and serve so faithfully.
We at NHC look forward to having all of you back home.

Rob & Amy said...
This comment has been removed by the author.
Rob & Amy said...

Nate:

Here is another precious girl fighting the fight of her life with CF, Tuberculosis, and now Leukemia...

www.caringbridge.com/kathymarder

Angela R. said...
This comment has been removed by the author.
Tracy said...

This was a great post...

The mother of a CF daughter (11 yr old Molly)

Tracy

Sue said...

This is an amazing post.

Heidi said...

Very well put Nate! It's a tough battle for CF'ers (I am one) their families, friends, and eventually boyfriends/girlfriends and spouses. It's a borrible disease that like you said, takes no prisoners. I think CF'ers learn way too early about the harsh reality that is theirs...and their friends. I have lost countless friends to CF. All of the very close ones from childhood CF camp are gone...and it breaks my heart. I've also learned that it's part of life, a part that sucks...but it's the cards I was dealt (along with thousands of others)and I will deal with it. The pain, both physically, and emotionally is something that is a part of my life whether I like it or not. Pray for a cure to CF.

Piper said...

Nate, I have been reading your blog for several months now as a "lurker" after having been tipped off to your story through cf.com. You and Tricia inspire me to no end, not only with your strength and determination against this disease, but also with your amazing willingness to share your faith and personal life with others. For all the attention and awareness you have brought CF, for all the amazing messages of hope and strength, and for all the beautiful smiles, I can only say, with deepest gratitude, thank you.

This post in particular touched me more than you know. As a 26 year old CFer, I wanted to thank you from the bottom of my heart. YOU and your gorgeous wife and baby send a shiver of hope and faith down my spine everyday, and I will forever remember this generous shout out to all of us facing this terrible disease. In the meantime, my thoughts and prayers are with Tricia and your family. You are wonderful examples to us all.

Rita Andrews said...

Nate
You ane Tricia are both amazing people. I am so glad I found your blog months ago and have followed your journey. What an amazing one it is. I too had cancer at 29yrs old. I overcome the obsitcales and now feel like I have life again. We are now the proud parents to 6 awesome kids, and out of those 4 are adopted. Three of which have Down Syndrome. I wouldnt trade a SECOND of my life! WE have to look at each and everyday as a new blessing from our Lord. He gives us the strength to carry on with our walk....bless you my friend. Keep getting that stregth because you will be God's hands and mouth to your precious wife Tricia and the loving arms of our God to sweet Gwyneth....May He Bless and keep you safe in HIS arms.

Rita A
Alabama

Taylor and Devon said...

Nate...my husband was diagnosed at age 42 ,2 years ago. Having some scarey issues right now both with him and our kids.
It is so wonderful to read of you and Trisha's strength and faith. I pray you continue with this blog. Every day you story and strength inspire me to keep going. My thoughts are with you.

Nikki said...

Your blog, your life, your love for Him who sees you are ALL incredibly encouraging. My 3-year-old daughter with CF is a strong-willed pain in my booty sometimes, but when I read about people who love Jesus and that have CF(or that care for those with CF like you) I am reminded that there is a reason for her "i can do it myself(and better than you could do it any day)". CF is big but He is bigger and this is what we strive to impart to her daily. Blessings to you and your precious family!

Jack said...

Very enlightening post! You know, ALL of us face certain death, we're just not faced constantly with it like CFers are. I wonder what would happen if more people chose to be blessed with the exact and specific life God gave them, whether healthy or sick. Why can't we all choose to be content, right here, right now, in this moment? Why does it take illness and death to bring out that contentedness ?

~j~ said...

this was really hard for me to read...but totally inspiring giving me even that much more dedication and committment to prayer and getting the word out about cf.
How many more times will I thank you Nate Lawrenson?! probably a thousand more..
thank you

Christy said...

I am so blessed to have so many CF friends. Tricia, you are such an inspiration to me as I have told you before. Nate, as a caregiver, you give so much and ask for so little. God bless you both!

Amy Lynn said...

Thank you for writing this, Nathan. You have a beautiful way with words.
What a wonderful reminder to always live life to the fullest. What an inspiration Tricia has been to so many. Thank you for bringing an awareness to so many about CF.

Blessings!
Amy in Oregon

Princess Talana said...

Thanks for the post Nate :) I'm less angry than I was earlier, it just, I've always been so hurt when I see people with CF that are younger than me die. This disease, and all it's nastiness, this is one of those things that hurts the most.

But still, even though I'm upset, a smile crosses my face, the fighting fire that CF has lit within me burns still...

Erin said...

incredible...

I have a question I do not know if you can email me about it. My daughter is almost 7 and went to the ENT this week. The doctor looked inside her nose and then suggested she is screened for CF. I am SO confused. After reading this post and seeing that people can be diagnosed later in their life... I am wondering if I should have opted out of the testing or not. When we were pregnant with #3, because of complications, we had genetic counseling done... and due to my husband having a pancreatitis diagnosis... they decided to screen us with a blood test for CF... NOW years later, I can not recall if it was a 1 in some number chance we would have a child with it.. or yes or no... So, now I wonder if I should make an appointment and have the screening done. The doc today (pediatrician) did not see the need to do the screening. ugh. I need some advice.
sorry to bust in to your post...
my blog is http://bellfamily1999.blogspot.com
I have a posting in there about it.. but I am now even more confused because I assumed she would have been diagnosed by now especially with the battery of tests she has been through in her short life.
Thank you in advance... I am continuing to pray for you all.... thank you for sharing your life with all of us...

Angela R. said...

Nate, as a 22 year old CFer that was truly touching on so many levels. There was so much truth in it and I honestly don't think that could have been put into better words. So on behalf of myself and others living with CF I would like to thank you from the bottom of my heart for sharing that post as well as your journey with all! You and Tricia are a true inspiration and have opened a door of hope for others with CF.

God bless Tricia and all others living with CF, as well as the lives lost. Praying for a cure found!


-Angela

Denise said...

Thank-you for writing such a beautiful, heartfelt post. It caused me to pause, reflect and give thanks.

Adrienne said...

I have no words that are profound enough to comment on this post so I'll send a cyber hug to your family. I have never met you guys, but yours in the first blog I check when I get online. Even though I don't actually know you IRL, I feel like I am a part of your prayer team. I can never claim to know what CF is like (although I know what it's like to have a family member play a sub-zero game that they can't win) but posts like this give me just a taste of what you guys live with everyday. Thanks for taking the time to share!

Chelsea said...

Wow, that was an amazing post. Thank you for sharing. My dear friend, Krista battles this disease every day. Her strength, Tricia's strength never cease to amaze and astound me. You are in my constant prayers and thoughts.

Leslie said...

Very well written, from a mommy of a 3 year old little girl with CF. Our daughter Ashley has already been through a lot in just the first 3 little years of her life. I am always so proud and amazed at her and the fighter that she has already shown to be.
Thank you for being so faithful to the Lord throughout your challenges. It is an inspiration and encouragement to many!

Emily said...

Nate,
That is one of the best descriptions of a CFer life I've seen...thanks for portraying us, as CFers accurately- its a gift from God to choose to live life well.
Thanks so much Nate, I'm praying for Tricia's recovery tonight.
-Emily Haager

Jen, Dave and Leah said...

Beautiful post Nate. Makes me think of how short life is and to live each minute to the fullest.

Scott said...

This was a great post. I couldn't help but think what a lesson to me. Knowing all of us are terminal in one sense. CF helps a person realize their days are numbered while most of us without it go on blindly thinking we have forever!

Toria said...

Thank you, though I, and pretty much all other people with CF was brush that kind of praise off, we thank you for it from the bottom of our hearts x

Erin lee said...

that was wonderful. as always you guys are in my prayers.

mom2LEAA said...

WOW
God bless you and Tricia, for sharing your lives, with those of us uneducated about this disease and the life of one who lives with it. Thank you,
Cindy

Somer Love said...

Thank you Nate!!!

What a moving post, you and your family continue to be an inspiration to the CF community.

BREATHE EASY HALEY!!!

Erin said...

That was beautiful.

Rene said...

I will keep on praying for you and your family.

It is such an honor to care for our cf children/wifes/friends.

God bless

Rene
South Africa

jen said...

Beautifully written.

Candy said...

Beautifully written. Thanks for your honesty and insight.

donna jean said...

i cannot agree with you more- my sister died of cf when she was 17- but she helped and touched so many lives- more than i ever will- and i am 32...
she never complained- just dealt with what was given to her- and still lived her life the best she could..

so- i pray for your wife and that poor family who had a child die way too young... i have seen what it has done to my parents-- no one should have to go through losing a child..

and i know that you give inspiration to all who have cf- that they can find happiness with someone- and they will not be rejected when someone they want to be with- realizes that they have a life threatening disease...

donna jean

holly said...

Thank you Nate. I needed this. From a cf mommy!........Holly.

Patti said...

Thank you so much for this post Nate. There are so many people who think that they understand CF and they really don't. Sometimes it is really frustrating trying to explain the severity of it too. I remember one time when I was working, someone asked me how I came into work all the time and smiled, knowing the future that lay ahead. I told her that it could be much worse, and she still didn't seem to understand. At that time, I was being evaluated for transplants (double lung and liver) and I was only 23. It is really hard to deal with CF, let alone having the slightest cold that is normal for one person and turns into a 2-3 week illness for us CFers.

I have "met" a lot of people on the Internet who have CF, in their 20's, and are just getting by, others who have had transplant at the age of 10 or so and then didn't make it, and then on the other hand knew a guy personally (who helped me through so much) who lived to be 48. People say he died so young and I say he was "old" for a CFer. I miss him dearly.

I had my very successfull double lung and liver transplant 1 1/2 years ago and am doing great. I am thankful for any life that I get out of these organs now as I would not be here today if I did not get them. My organ donor and their family saved my life and my family. My husband still has his wife and my son still has his Mommy.

Thanks again for you post!

walkingbyfaith said...

Beautiful.

Thank you. :)

Courtnie said...

Thank you. I posted something similar to this on blog the other day.

Many thanks from a mom of a CFer.

Dragonfly said...

I completely agree.

Haley & Dustin said...

cf isn't fun but it makes me who i am. i'm really hard headed and tend not to be compliant sometimes. i need to be for my daughter. i quit my job the other day so i can be a full time mom and take care of myself.

hopefully one of these days we will have a cure for our disease.

Sarah said...

thats beautiful.

Princess Bishop said...

thank you for sharing. My eyes and heart have been opened by your BLOG and my prayers for you and your family and other CFers many. I will keep you close in my heart.....