Monday, July 6, 2009

Reality

It's not something we often talk about between the two of us. It's certainly not something that we usually feel comfortable discussing with even our closest friends and family. It's not even something that comes up in our recent conversations with Tricia's medical team.

But, the reality is, even with the transplant, Tricia is still very sick, and, without a miraculous, unforeseeable medical breakthrough, her life will not extend beyond a handful of years more.

Yes, we do know of transplant patients who have lived well past the 8 year average life-span post double lung transplant, and certainly, a second double lung transplant is, at least, a very narrow possibility. But, those cases are the exception, not the rule.

Reality for us is that Tricia weekly, sometimes daily, deals with an incredible array of physical issues, most of which we choose not to blog or talk publicly about. Relatively speaking (say, compared to a year ago today), Tricia is doing incredibly well, and we are beyond thankful for each day we've been given. The past few months of maintained health have given us more hope than ever that we might be able to enjoy "normal" for a while. She has truly not felt this good in years, and for us to complain about, or even discuss publicly these health issues would be exhausting, depressing, and would not be reflective of the joy and happiness that we sincerely live each day with.

But, the reality is that Tricia's body is and will forever be in a very frail state (those who live with a chronic illness and transplant can relate, I'm sure)...with every fever, every cough, every strange side-effect a bit of worry creeps in, quickly followed by a prayer to hope that it won't be anything major. And, although she is doing so well for Tricia (and much better than many other double TXers at one year out), her bouts with lymphoma, pneumonia and other illnesses this past year have slowed her progress and kept her from doing as well as we had originally hoped for coming out of transplant surgery.

Of course, to maintain a healthy relationship and a healthy grasp of things known as well as things hoped for, the reality of our situation is discussed between us at different levels from time to time...we are grateful that life and death and all the stuff in between is something we have been able to talk about freely since the beginning of our relationship. But, the truth is, it can be difficult to discuss these things with others who know and love us. To talk about it so seriously usually leads to a deep well of emotions, which makes it difficult to talk. To talk about is lightly just seems to lead to confusion and concern...

But, the reality is, we really only see a small piece of true reality. I cannot know what tomorrow may bring, and I am not guaranteed any more time on this earth than Tricia. We make our adventurous plans and dream big just like anyone else, but we also take advantage of every moment together and live for today, believing that God continues to hold our past, present and future in His incomparibly tight and gentle grip.

I never understood what carpe diem was really all about until recently. We have been given an incredible gift...a glimpse of what life could be like without the miracles...and we don't want to go back to the way things were before, taking so much of life, both the "good" and the "bad", for granted.

It is now 4:36am, and I've already been up with a grumpy 18 month old for an hour. My body tells me that I should be sleeping right now, and a few years ago I would have not been too happy about being up at this time of day. But my reality has changed, as has my perspective, and, although I will never perfect it, I am learning, albeit very, very slowly, to find the joy in each and every situation. I wouldn't trade a single, late-night hour with my grumpy daughter for anything...neither would I trade the reality of crawling back into bed with my sleeping wife in a few minutes.

Nate

104 comments:

Cheryl said...

you brought me to tears...that is such a heartfelt written post, you are an incredible Husband and man...thank you for posting such a beautiful look at "life"
I wish you, Trisha, and Gweneth many happy days together...

Irene said...
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Irene said...

Hi Nate, I am up early, for me, its getting ready to get on the road to Norfolk for doctor appointments. You said that very well, at least from my point of view ( a lung transplant recipient myself). On my car, and several places around my house is the phrase, that I have adopted, "Celebrate the Day!", much like Carp Diem. Day to day, things can change so it is best to take advantage of the good things contained in each day. By the way, I am a little over 9 years out from my transplant, so stay positive and both of you stay proactive with Tricia's health. When people ask me if I am working now, I tell them, yes, I am working to stay as healthy and alive as possible!
God Bless you both,
Irene in EC

ellen charge said...

jsut saw this and felt commpelled to respond you all r so great so pinspirational and ture i have charge syndrome i have been in and out of hospital many times out here in aus and have been in with many cf people sadly lots of them died one did get the transplant but did as you said can happen in this world got complications and died a year and a half later all i say now is hope that ricia keeps goign but know she will join all my angel freinds that i have floating abo e me but hope its not v\for a very long time give her a hug form me pls

"Just Me - NC Beth" said...

My heart hurts for you, Tricia and your sweet little girl....

I had the great privilage of meeting twin sisters back last May that had both had double transplants..they spoke at our Great Strides walk where my great-niece had a team (she too has CF)...these ladies ae 36 now...live in California..I cried when I realized that there is still hope...HOPE...that with new breakthroughs, the life span can be longer for those with CF...

My prayer for you and Tricia is that God in His infinite mercy will continue to bless your family...and no matter what time Tricia has on this ole earth, they will be some of the best times you'll ever experience.

Blessings, my friend!

Love in Christ,
~Beth

aprilmoonflower said...

This is true on so many levels. The moments before us are the ones we should celebrate. I very suddenly became a widow at the age of 31 with a 2 week old and 17mo. So I know firsthand how fast "reality" can change. Celebrate today as if it's your last because not one of us knows what tomorrow will bring.

Andy Lawrenson said...

2 Corinthians 4:7
Now we have this treasure in clay jars, so that this extraordinary power may be from God and not from us.

Read your post then opened my Bible (youversion.com) and read the next chapter in my daily reading and saw this and thought it fit well.

Sharon S. said...

Thanks for sharing your heart. The realities of this fallen world can be gut-wrenching. For you, it's CF, for me it's a son with severe autism. But I'm glad that we serve a god who promises grace sufficient for each day in Christ Jesus.

Emily said...

Great post, Nate. "Carpe Diem" has been my motto for a long time, and it's a great one!
I am about to hit my four-year anniversary. Most of the time, things have been fantastic. I am really so much better than ever before! And yes, some progress has been slow.
I too have worried about "Reality" sometimes. When I date, I always wonder how to bring it up. BUt then I say, "no one knows how many days they get. It is bette rto live each one fully and with God, so that if today was the last day, I would have no regrets." And so far, I don't have any.
Remember how NEW lung transplants are. They've only been doing them for 20 years! Recipients like Tricia, and like me, and all the others, are setting the curve!

Michelle Jamie said...

:)

Kim said...

Spoken perfect and beautiful. I am living this with my family, I had leukemia 14 months ago and did well. I live in the blessed reality every day and do my best to keep true each day. I am learning even more now as I relapsed and in hospital now doing chemo and going on for a transplant after this. All this goes on and you just want to be a parent. I have three little ones, I know about those sleepless hours, hang in there they fade away and then you want them back.

Your a beautiful family who will be having fun for a long time,

Nancy said...

Getting to know your family through all of this and seeing how faithful you all are has certainly changed my "reality." Excellent post Nathan.

Melanie said...

Thanks for your openness and honesty.

Rene said...

So beautifully written and well spoken. For the past 3 years, our life has been living moment to moment. First, with our medically fragile son (that we lost in August at 23 months old to heart defects) then with my husband who lives with congestive heart failure at only 35 years old. I completely relate to everything you are saying.

God bless you and your family. Only He knows how long we will have with our loved ones and it is up to us to make the most of the time we are given.

Tara said...

Nate, your post has brought me to tears. You are a gifted writer. You are so right when you say your need to cherish each day and that you are enjoying early mornings...or trying to.

I try my hardest to wake each day and remind myself to savor THIS day because it just may be my last. You never know what God has in store for you.

God bless you all.
Tara

My Little Cuties said...

Thank you for your perspective Nate, I think I should print and frame this entry, especially the last paragraph. We all need to understand that life is fragile and can change in an instant. Even those of us blessed with 'normal' every day. Boy do I take it for granted!

Mrs. Bee said...

Nate, I am praising God for the miracles He has performed in your family's life. I also praise Him for the struggles. Fear comes when Faith Falters...

Mel said...

when i read this i made my heart leap for its transparancy because life is not fair. Yet your heart shows that while life is not what you always want, you and Tricia strive to view the blessings you have.

Paul and Christy said...
This comment has been removed by the author.
Paul and Christy said...

Wonderful post. We have a sister from church that had brain surgery last Thurs. She has already had many complications and then good reports yesterday. Time is but a moment. Reality has a way of getting away from us sometimes. We discussed a lot of reality last night at church. This post came at a good time. Time is precious. Good times, odd times and not so great times are all something to hold on too. I seem to be thinking a lot lately too about singing through the battle. In the old Testament, they sent the singers in first. In our lives now, what if we praise and worship as we go into the trials. Don't know if it makes sense to others but it does to me.

Anonymous said...

I have thought about just this so so so many times while reading your blog... a double lung tx gave my friends 2 'bonus years' with their little boy, all the while, knowing that they truly were strictly a 'bonus'. I have always assumed that conversations such as these are a regular (albeit still painful) part of life in your household, and am sure that if I were you, I wouldn't want to share much about them either. After all, your public story is about the HOPE and GRACE of God that shines through all of this.

Yesterday's sermon in our church focused on one single powerful verse... John 14:1... which is really hitting home for me with a specific situation right now... and I think it's also 'good medicine' in this case too.

Have a wonderful day with your sweeties... and if you haven't seen "UP"... go see it...

Amy E. said...

As always, your post makes an impact and blesses me. You, Tricia and Gwyneth are such a blessing and a beautiful picture of what God would love for all of us to have. Love for HIM, Love for our spouse, Love for our Children, Love the world...bless others.
Thanks for your honesty. Know that you and your girls are prayed for often.
Have a wonderful day

Julie said...

Very well said. Thanks for sharing something that many of us don't think about too often...we just take for granted that our friends and loved ones will always be around. It's a good reminder to live each day to the fullest!

Avery & Hailey said...

Thanks for this. We've had some late nights over the past few weeks with both our 3.5 year old and 8 month old and it's so easy to get frustrated and just want to sleep, but we really should cherish those times too because they won't last forever. Thanks for the jolt. I needed this.

Kori said...

Beautifully written Nate.

Isn't it amazing to think that God knew our realities and our lives before we could have ever dreamed them. Even though it's tough most days I am thankful for the reality and the gift of it all as I know you are too.

Much love you guys.

Kristi Bowers said...

Thank you for sharing your heart and for being honest. As a mother of a child with CF I "get" what you are saying although we are many years behind you in our journey. It is a hard concept to explain to people "outside" the CF world the concepts you were touching on in your post and when I read this I was moved to tears and very appreciative of all you have shared with the world. Whether you know it or not you encourage others that are on similar journeys... We see what you go through, how you deal with it, your Faith, your honesty, your passion and your devotion to your family and we (I) realize that I can make it too and you remind me not to take for granted any moment I have with my son, with my family because you are right, we do not know how much time we have and we must enjoy each moment we have....thank you again for your transparency, your devotion to your daughter and wife, your faith in and to the Lord and for putting yourself out there for all to see. Praying for you all daily....

Anonymous said...

Hi Nate,
I have been reading your blog for some time, but have never left a comment. Your latest post was beautifully written and a reminder for all of us to not take for granted those that we love. G-d has blessed you and your family and I hope that He continues to do so for many years to come.
I know that you and Tricia make each day count and fill those days with love and joy, and are making wonderful memories.
G-d Bless!
Debbie H.

Bonnie said...

A friend of mine has a note posted in a highly visible place.

"Don't waste this day...."

Sometimes, I get so busy trying to do all the right things for the family, that I push the family away so I can get the things done.

My prayer each morning is that invest the time in the right things. thanks!

Loretta said...

You and your precious family, and your unwavering faith, are so inspirational to me. I'm battling stage IV metastatic breast cancer and consider every day a bonus. You are absolutely right that you have no more guarantee of a certain number of years of life than Tricia does. Only God knows when our time here is up. I try to leave that in His capable hands and continue to live my life seeking His face and His will. Meanwhile, I pray for a cure for CF and for cancer. One day, those of us who know the Lord will ALL be free from ALL disease. :)

God bless you & your family.

Hugs,
Loretta in GA

InDeeds said...

Thanks for sharing your honest thoughts! It was very touching and inspiring

Faithe said...

Nate, I don't comment very often to any blog, but have been following yours for over a year now. I just want you to know you are an INCREDIBLE family, and a large part of it is due to your INCREDIBLE unselfishness, love and dedication. You and Trish both are an inspiration and Gwenyth is one BLESSED little girl!!
I appreciate your transparency, and because of it I feel like you are friends I know personally. I have come to love and appreciate you like my own family.
I pray you have many more happy years together. Now...go get some much-needed sleep!!!

Scarlet and Gray said...

Beautifully written. Carpe Diem!

Sewconsult said...

I have been following your blog for a few months. Your post today expressed what so many of us (I) needed to read. Reminding us that we must take advantage of the present & live each day. My terminal brother & I have recently resolved decades of antagonism. I wasn't sure that it would happen before he died. The night that I was able to tell him that I loved him was a burden lifting moment for me.
Beckie in TN
Be kinder than necessary, for everyone you meet is fighting some kind of battle.

marcia said...

Beautiful post, Nate! Thank you for sharing from your heart! Hope you got a bit of nap before you were up for good! :)

Wilbanks World said...

So beautifully put Nate - thank you for being so transparent and sharing with all of us. Your post really puts my own middle of the night feeding angst in perspective and makes me so grateful for them!Thank you for sharing your journey with us!

The Bear and The Bug said...

Thanks for the perspective on life. I actually really needed that today.
I pray that the three of you have as much time together as possible and that every moment of it has at least a little bit of joy. God bless.

asplashofsunshine said...

Your reality is one that not many in this world will ever face. Thank you for bringing me back to reality... even though my reality is different than yours. All three of you are an amazing family. Thanks again for bringing me back to reality.

Anonymous said...

Probably the best you have written. Very touching and oh so relatable.

KK

amy smith said...

what a gift you have been given... it takes so many a lifetime to realize what they have. praying for continued health, and for living outside of the complacency so many of us find ourselves in.

ShEiLa said...

Reality is tough to swallow.

Yesterday in church a woman named Dee got up and talked about the passing of her dear husband... his funeral was July 4th so its recent.

She told us all to take advantage of the time with our loved ones. Not one of us knows when the person next to us will be called home... so we should cherish every moment. Dee is an incredibly strong woman and made me ponder on how short life is... shorter for some than others.

In a nearby town a few short weeks ago 2 teenage girls were unexpectedly called home. What a shock!

It is not easy knowing that the days on earth are numbered... but I can tell that you both cherish the smallest of miracles.

May Heavenly Father continue to bless your little family... Thank you for sharing emotions that are so very personal.

ToOdLeS.

Momof2bz said...

No matter what the reason, there is no shame in seizing the day. God gives us a gift each day we wake. You truly touch us with the love you have for your family. Your honesty about the realities and fears you face is profound. You are all in my prayers for continued health and happy long lives.

jessica claire said...

your and tricia's faith in God has helped me with my own more than you will know. God knows the number of all our days already, they were set before we were ever born. were it not for Tricia's situation, who knows how many days would have passed without talking, without treasuring every moment. you might want to check out this blog sometime: jumpdavidjump.com/ David was diagnosed with a brain tumor a few weeks ago, and his perspective is refreshing. he is an amazing writer and easy to ready.

xoxo

T.S. said...

Thank you for sharing your lives and choosing to be a blessing to so many. God is glorified through your uncompromising faith in Him.

Taylor Smith

Amy said...

We should all choose to live in a way where we don't take things for granted and can appreciate what we have. Thanks for this post and reminding all of us how important each and everyday should be in our lives.

Mrs. Dan said...

We're praying for you guys!

Side note: Is Gwyneth really 18 months already?!

Bugtheteacher said...

Thank you for sharing this.

Rachel E. said...

Thank you for sharing this. I had wondered about some of these issues, since you have touched on them before, but didn't want to ask. Your unwavering faith and choice to live for today and enjoy what you have right now inspire me, as well as, I'm sure, many, many other, to live the same way as well.

Anonymous said...

So beautiful and wonderful to tell people to put their trust in God who guides them through their life.

My computer screen saver is "One Day at a Time" Teach me to pray - show me the way - one day at a time.

In church yesterday, we received word that a fellow student of my son (11 years old) received good news that there are no signs of leukemia in her body! Tears of joy flowed down my checks.

God is good. I know you will keep your faith in Him.

Love in Christ,
Kristy - Nellysford VA

YoungNaNa said...

Thank you for sharing! You are truly helping others. Looking forward to hear more about the fundraiser and home made jewelry.

momnananelson said...

Nathan, I really became emotional reading this post. You are something to be admired Nathan. I honestly feel if all men shared your views it is safe to say there would be alot more happy woman in the world and a much better place to live.
As a parent i have to say your, parents must be absoulty totally 100% proud of you.
I keep Tricia, Gwyneth and yourself as well as your other family members in my daily prayers.
There are alot of wonderful things in store for your beautiful family of three. I just know it ....
GOD BLESS YOU & YOURS ALWAYS.

Jaime said...

Nate, you could never know how perfectly inspirational this was to me at this precise moment.

Thank you. And God bless.

April said...

Well said!!!!!!

Clair said...

If any family encompasses carpe diem it is you, tricia and gwyneth. You have more joy and love in your lives everyday than some people achieve in their lives and you choose to share it with everyone! Thanks!

Cheryl said...

Another Cheryl here and one that is always amazed and blessed by your writings. I recently became a statistic when I became LAID OFF. When even a hint of dispair tries to creep into my brain, something stops me in my tracks and reminds me how fortunate I really am.

God bless you and your family. Thank you for sharing what you can of your incredible story.

A Dusty Frame said...

Thank you for sharing.
I've wondered how her health really is.

I'm sure that thinking about it all is really sad and difficult.

It's a blessing that you know to seize the day and do your living now. You won't have any regrets.

((Hugs)) and prayers
Lizzie
www.adustyframe.com

Sandra Glewwe said...

Thank you for sharing your reality with us. We are priveleged to see your family in action, even an "edited" version.

Radar's Mom said...

When I was reading this post I was thinking about how relatively "normal" your life now seems to all of us blog readers who have been following your story for the past year and a half. Since I've started my own blog I now get how you choose to share certain stuff and keep a whole lot of other stuff for yourself... partly because you might not think it interesting for readers, partly because you don't want to hurt someone's feelings or partly because there's lots of stuff that just can't be put into words or that you just don't want to share with strangers.

I am so glad that you continue sharing the pieces of your life that you choose to share. I know that I don't really know you guys... that I don't know all the little things that make Tricia such a wonderful friend, mother, wife, etc. But you've certainly given us enough of a taste so that we really care for you guys, learn from you and wish every happiness for your family. This was yet another of your wonderfully thoughtful posts and since all of our days here on earth are numbered and most of us have no idea what the number is, carpe diem seems like the perfect advice for all of us!

Love,
Christena

Anonymous said...

May God continue to bless Trisha,Gwyneth and you with many wonderful days ahead. Your an incredible person Nate. Thanks for sharing such a heartfelt post.~ Darlene

DogsDontPurr said...

((Big Hugs))

I completely empathize with you in this post. My boyfriend has diabetes and bad heart disease. We practically live at the hospital. Paramedics have been to our house more than our friends. It's tough, but somehow you grit your teeth and get through. But all the time that little speck of fear and reality are in the back of your mind, hanging over everything.

I don't know how people who don't believe in God get through these types of situations. The power of prayer is that one bit of magic hope that I can hang on to.

I continue to keep your family in my prayers, and continue to think good thoughts for you. Thanks for sharing your story.

Sheri said...

I wish we all lived with the attitude that you guys do. I for one am guilty of taking things for granted.

Ya'll give me such hope that my nephew Dameron will have a chance at life. Thank you for that.

I posted a few new pics of him here for his 2 year bday if you want to see him.
http://noahandgrace.blogspot.com/2009/06/happy-2nd-birthday-d.html

Oh, and Gweneth just keeps getting cuter and cuter!

Anonymous said...

Nate.....this is so beautifully written and poignant. Thank you so much for sharing. It puts it all into perspective.

Jess

One Down, One to Go said...

Carpe Diem - my favourite words. My life has been full of so much 'stuff' and it has made me seize these days that are good and live them to the fullest. Even pottering in the garden pulling out weeds whilst listening to music has great joy - truly.

How incredibly blessed you are.

BMom said...

Beautiful post, Nate. Simply beautiful and something we all need to remember. Thanks for that - I needed that today.

Always in prayer,
BMom

The Beaver Bunch said...

Well put Nate. After sitting with my 16 year old half sister this past week and watching her morn the loss of her mother(my step-mom), I understand that this short life is a mere blip on the radar of eternity. Yet, we should hold fast to the precious moments that our God has given us and share His mercy, love and joy with those around us.

mom2LEAA said...

I wish I could remember to give thanks in all things and find joy in each day. You remind me that each day is a gift and that we should give thanks. Ptayers continue for health and peace in the days to come.

Cindy

Danifred said...

This post is the reason I keep coming back to your blog. Thank you for reminding me to appreciate ALL that life has to offer... the good, the bad, the in-between.
Thank you.

Karen said...

You are wise, and I listen to you. I always learn something about love, and life, and God.

Anonymous said...

Truly beautiful. Hard. Beautiful.

Anonymous said...

Nate and Tricia,
You both are a living testimony of Jesus Christ our Lord. I have been following your story for a long time. Have cried with you, laughed with you, prayed with you, and am thankful to the Lord for you both in my life. You have changed me through your story. I continue to pray for you both and your precious daughter. May God ocntinue to give you blessings and may you live a long life serving the Lord together and reaching so many with your testimony of His love and faithfulness! I love you! and someday in eternity we will meet.
A sister in Him!

Ang said...

Nate, I am so blessed that a friend directed me to your blog. I pray for all of you alot. There are certain times things trigger it more than others but just wanted to tell you I am praying for you!

Anonymous said...

Nate,

You're a dear man, and a fortunate one for knowing the value of what you have.

Best wishes and good health to your family.

Hallie

Anonymous said...

What a wonderful post. I have been struggling with the challenges of being the parent of three very young children lately, and this just jolted me back into the reality that I SHOULD be living in. Plain and simple, I think I've been complaining too much. Of course it is healthy and good to be honest about our struggles and share the bad along with the good....but I know I have been giving too much attention to the "bad" lately.

Anyway, thank you for setting a great example, and reminding me to savor the incredible gift of each day with my kids--potty training mishaps and all!! I feel much better already.

This was also a good reminder to keep the three of you in our prayers, Tricia especially. Those of us who do not live with serious chronic illness cannot possibly know all of the ways it affects your lives on a daily basis. We need to continually ask for God's peace and joy to guard your hearts, no matter what each day brings.

BrunetteKoala said...

Thank you for your honesty Nate.

Whatever happens you can bet that there are a ton of your friends and family 'in real life' (from what I can tell) plus a ton of blog readers that will be there encouraging and praying for you, Tricia and Gwyneth.

With every blessing to you and your gorgeous girls,

Laura Anne in Scotland

Kira =] said...

Your attitude is a good one and how fortunate to realize these things early on. =]

jessica said...

you have an understanding most people don't get till it's too late, praise god for that! and carpe diem!

Lexie Loo & Dylan Too said...

My thoughts and prayers are always with Tricia and your family.

Danine said...

I pray that Tricia breaks miracles and you two can enjoy your 50th wedding anniversary (I know I've said it plenty of times...say it enough it'll come true!).

It's the same thing with my mother and her brain anneursyms. We take each day, day by day. And that's exactly how I tell someone when they ask. We can't dwell on them because it'll eat you up inside. You take what God dishes at you at the time being and love it for all there is.

Tricia said...

I check and read your blog everyday. When we were at the outer banks several weeks ago-our favorite place on the planet-all I kept saying is this is where Tricia lives-(somewhere on the outer banks) this is where Tricia and Nate go to church and so on.

I have been living and dealing with Rheumatoid Arthritis-for the past 12 years so while my aches and pains and meds are different-I understand what it is like to live with a chronic illness.

I am so thank for-for all that I can do and turn over to God those things that I can't. I praise God everyday for the husband and life that I have.

Anyway-your blog post touched me and I just wanted to send cyber hugs to you all.

From One Tricia to another-Joy to your day and God's Peace and Grace and Seize the Day-the moment- Everyday!


Tricia in Richmond, VA

megasam said...

Nate that was wonderfully written! It hit close to home for me. My husband has a terminal illness and will someday soon need a transplant. I struggle with our reality all the time. And with two young daughters sometimes I find myself overlooking the important things. I get so wrapped up in the bad stuff and the worrying that I forget to focus on now. Only God knows how long I will have my husband and I really want to enjoy as much time together as possible. Thank you for this post. It was so heartfelt.

Gail said...

I have been reading your blog since before Gwenyth's miracle birth and Trish's transplant and have offered so many prayers, and tears of thanksgiving to the Lord and have been blessed by your sharing more than you will ever know this side of heaven (as I'm sure so many others can attest to) Today, your honesty has compelled me to respond with thank you, thank you ,thank you for trusting the Lord and for expressing the truth about life's lessons and specifically, what true love, and yours and Trish's life's journey has taught you about what is important. I was brought to tears of remembrance when you said that you understand what carpe diem means now. You see, I lost my 17 year old daughter to cancer(leukemia) in 1995 after her three year battle against it, and she wrote some profound things about what God taught her before she died and one thing that she wrote about the little children she saw in the hospital with her was that "even though they may have been so sick the night before, they would be up and around the next day playing and smiling,as if nothing had happened the night before, and they taught her the meaning of carpe diem; of making the most of each day, or many times- each moment. I,in turn have learned that from my daughter, Shayne. Now I do know that every minute of the good and the not so good times we experience is a gift from God and I try not to miss any of them. Today, your blog was one of those cherished miracle moments that have blessed me beyond these mere words.Thank you for allowing God to use you to bless others like me in this way. I'm so glad that we're united in these shared truths and through our faith in Jesus.

Emily said...

Carpe Diem, indeed. I am thankful you posted this, it's something that I don't think people see about life with a chronic illness. The reality of life is something I wrestle with each day as someone with CF but knowing God's is ultimately in control and holds each day is such a gift and a comfort :). Praise God for His work and plans!
Thank you for being open about this, sharing this with the world- my heart agrees with you! My prayers are with you guys today.
-Emily

lauriemcfarland said...

Thanks for the reminder to cherish every moment, even the difficult ones. It helps me remember how much I have to be thankful for, especially when my kids drive me crazy, my house is really messy, and many other little things that can distract us from what's most important.

Becky said...

My head and heart are very full after reading this post. I think that in spite of the crazy health issues your family has had to face, you keep an amazing perspective on what is important. God bless you.

leannenannette said...

This brought tears to my eyes as well. I got on here to tell you something, and it goes so well with this post. I was going to tell you that God just recently brought about a situation that had me thanking the Lord all over again for the miracle He gave you all with Tricia's transplant because a dear family friend who was in her 20's passed away b/c of CF as she was waiting on the lung transplant list. It just was a great reminder of what a blessing, and truly miracle, it was and is that Tricia was given another chance at life. I am so thankful that He did and you have several more years together as a family. Many blessings!

Kenzie said...

Thank you for sharing the intimacy of your lives with so many of us... I continue to check in often, loving the pictures of sweet Gwyenth, your beautiful, strong wife and you all spending precious time together. Your friendship, prayer and support for us through our darkest days will always mean so much to me. Thank you Nate!

brad.kellie.carter.lucy said...

We can somewhat relate, even if it's on a different level. After spending 4 months in the NICU praying that my son would survive, I cherish every moment and look forward to the day that he colors on the walls and furniture. I'll frame it! Thank you for sharing your heartwarming story and your beautiful family. We will continue to keep your family in our prayers. You are a wonderful father and husband, as I know your daughter and wife can attest.

Krista said...

So incredibly put...I will continue to pray that you, Tricia and Gwyneth have many, many more days, weeks and years to be together!

Anonymous said...

Beautiful words Nate......so precious :) Thanks for sharing them with us. After losing my Mum to cancer and having my son fight it, I too teasure each and every day. My son has continued health issues, but thankfully he is here with us :) GIANT HUGS TO YOU ALL!! GOD BLESS, Liz & her precious gang from the Land Down Under XOXOXOXOXO

Tara said...

Hi again Nate,
I haven't checked out your page for a couple weeks so I was catching up today so here is my second comment. First I don't have to tell you that God already has our lives planned out. I understand how scary life can be post tx and like you I don't like to talk about the fact that tomorrow I could wake up be sick and then not overcome that sickness and leave this earth forever. I have had my rough patches since I got my lungs 17 1/2 years ago. Being that far out is a miracle in its self. When my now hunsband proposed I thought deeply about calling if off. Because I knew I wouldn't live to be that old and I didn't want to put him through that. And like Tricia right now I am feeling the best I have felt in years. But is has me scared. When is the bad coming? Will that be the one that I don't recover from? If you or Tricia every need to talk feel free to email me. You both are always in my prayers.
Tara
tarahaddix@yahoo.com

Smashley said...

Have faith Nate! I work in transplant and my co-worker/friend just had her second liver tx. Her first liver tx. kept her healthy and strong for almost 11 years, but sadly she has an autoimmune disorder that attacks her liver. She is doing well and just came home from the hospital. She was getting really bad, but luckily she got her liver at just the right time. Even working for an Organ Procurement Organization (OPO) won't get you an organ faster! :):):)

Anyway, I guess what I am trying to say is while you have to continuously deal with the health problems associate with CF and the transplant, you just have to live. Don't look at the "timelines" and don't worry about "what ifs." Just keep on living life the way you want to and deal with the possibility of another transplant if and when it comes up. You know what the possibilities are, don't dwell on them. And thankfully, miracles do happen, people do survive multiple transplants, and autoimmune and other chronic illnesses can be beaten back with modern medicine and a whole lot of prayer:)

Stacy said...

"To talk about is lightly just seems to lead to confusion and concern..."

I just want you to know how much I understand this statement. My best friend has been struggling with breast cancer for almost 10 years now and it has recently spread. We often joke about things that others just can't understand. It is sometimes easier to laugh at what she does and doesn't want me to say at her funeral than if we would talk seriously about it.

Thank you for sharing that little bit. I completely get it and am glad that someone else does it also.

Kelly said...

Thank you for the perspective! It is difficult to take each moment, remove our own selfish agendas and wishes, and see the positive in it. I admire you for being able to do this, and thank you for reminding me to do it as well! Ultimately, we are all called to put our selfishness aside and be Christ-like martyrs for each other. A task that is difficult to say the least.

Spencer and Michelle said...

You really know how to put things into perspective for me. Keep blogging, you are an inspiration to me, and many others. Thanks Nate.

Coffespaz said...

Nate - this is an amazing post. Thank you for opening yourself up and sharing such an emotional topic. You and your family are truly an inspiration to trust in God and know that He is the true Master, regardless of the circumstances. I pray that He allows you, Tricia and Gwenyth many days together.

Anonymous said...

Thank you for the reminder of appreciating what is important and not taking things for granted.
-DS

JonesFam4 said...

beautiful

JonesFam4 said...

beautiful

Andrea said...

Nate - thank you for this post. It perfectly describes the mixed emotions and paradoxical reality of loving our 20-year-old daughter with CF. Every day is a gift and I have to remember not to take them for granted. The days spent sitting by her hospital bed serve as a reminder...It is incredibly validating to hear someone else describe what most days, you cannot put into words.

Scart said...

Hi Nate,

I totally can relate too a lot of what you say. While my wife and I may be a little better position currently with her health. CF has shown us that each day is precious! We are greatful for everyday that we have and were blessed with children also. I can understand the fears and worries. But I know that I know our Redeemer and Savior and Greatest Friend truly lives. His love is far greater than we can think. We can cry, yell, talk, ect. . . . to Him and he loves us and shows compassion more than we could ever imagine. You are in my prayers! Thank you for the blog. It has been much help and encouragement to me! Plus seeing the miracles in your life is another testimony to our Great Savior!

Sandi said...

Thank you for sharing this, Nate. May God bless your days together as a family.

~j~ said...

Thank you for that reality check...
the reminder to pray about those challenges for both of you, it's hard to remember when seeing all the "normal" things you are getting to do but the truth remains the same and the prayers must continue to be offered. I love that this reminder to live each day to the fullest applies to each and every one of us.
I am very,very grateful for you and Tricia and the baby.
The Lord bless you,
j

Kayla said...

I'm just catching up on your blog and this post made me both smile and cry. My sister faces the ever constant battle of a failing body in her own struggle with CF. Every day we have is precious... and sometimes we forget to think about it. We let the moments slip by. Yet, because of her struggle we have all learned to enjoy the smaller things a little more and take delight in the moments many people wouldn't find that incredible. Thank you for writing such a real post. And thank you for the reminder.

Kayla Becker
http://mkbecker.blogspot.com/

Julie said...

a perspective that the majority of us don't face on a day to day basis but true reality is, as you stated, that none of us know the number of our days. Thank you for the reminder to 'carpe diem'. Continued prayers for strength and joy in each day you have together. Your lives continue to be an inspiration. God bless,
Julie

kreed said...

What a beautiful post. Thank you for sahring your heart with us.