Stuff

Ramblings...  

At times when I have been discouraged, it was cards and E-mails from

friends which greatly helped me. Here are two I will share.

Dear Lori:

I was so glad to hear that "the four sisters" were able to come and see you. What a wonderful surprise that must have been.

I am so sorry you have been so ill. I can certainly understand how you must be very discouraged.

One thing God tried to teach me when my mother was so ill and in so much pain for such a long time (9 years) was that God's timing was not my timing on things and no matter what I thought should be happening in my Mother's life, it was not going to happen unless it was completely in God's Will and in "His timing". Trust me Lori, that was such a HARD LESSON for me to learn. I don't know if I ever did learn it properly.

Another thing I had to learn was to "take one day at a time". Sometimes if we look ahead, it becomes overwhelming and FEAR overcomes us." FAITH CHASES OUT FEAR, OR FEAR CHASES OUT FAITH" is something I read and thought about and it does have some truth to it. But I also know that as Christians we are not immune to FEAR AND PANIC in our lives. When fear and discouragement overcome us, David, the Psalmist said "Think of God and consciously trust Him" in Psalm 56:3 David said "Whenever I am afraid, I will trust in You".

Lori, Bob and I will continue to pray for you and Brian, as you travel this very very difficult road together.

God Bless, Love Joan

 

 

Hello Lori,

I read your post and I know how you feel. When my surgery did not work that I had in December, I was so depressed and ready to give up and learn to live the way I am now. I feel like you are like me, the Lord has a special plan for you. And right now it requires no change in your life, but that doesn’t mean that it will always be that way.

With me not being able to talk it really has been so difficult and hard at times. But, I am seeing the road that the Lord is steering me in. It is on this computer being able to share my life, my up's, and my down's with others that the Lord has working for Him here on this earth. We may suffer here on this earth, but we will be greatly rewarded one day. Then we won't need a trach or a new set of lungs, a rebuilt windpipe or anything like that.

Living for God is the hardest task that we have. But I do believe with all my heart and soul that when we reach the gates of heaven we will not be disappointed in the glorious place the Lord has waiting on us. It will be magnificent..............So, hang in there and know that you are not alone and a prayer is being said for you each night. Take care & God bless.

Love Janet

 

 

To Remember Me

At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped. When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don't call this my "DEATHBED." Call this my "BED OF LIFE", and let my body be taken from it to help others lead fuller lives.

Give my sight to a man who has never seen a sunrise, a baby's face or love in the eyes of a woman.

Give my heart to a person whose own heart has caused nothing but endless days of pain.

Give my blood to the teenager who has been pulled from the wreckage of his car, so that he might live to see his grandchildren play.

Give my kidneys to one who depends on a machine to exist from week to week.

Take my bones, every muscle, every fiber and nerve in my body, and find a way to make a crippled child walk.

Give my lungs to a person who has struggled endlessly everyday to capture a breath of fresh-air, so they might be able to run life's journey and know THEY WILL reach the end.

Explore every corner of my brain. Take my cells, if necessary, and let them grow so that someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her windows.

Burn what is left of me and scatter the ashes to the winds to help the flowers grow.

If you must bury something, let it be my faults and my weaknesses.

Give my sins to the devil. Give my soul to God. If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. Please sign an organ donor card and let your family know your desire to give the gift of Life. If you do all that I have asked, I will live forever.

Author Unknown

 

Twas the night before Christmas

Twas the night before Christmas and all through the town
Not a sign of Baby Jesus was anywhere to be found.
The people were all busy with Christmastime chores--
Like decorating, and baking, and shopping in stores.
No one sang "Away in a manger--no crib for a bed."
Instead, they sang of Santa--dressed up in bright red.
Mama watched Martha Stewart--Papa wanted to nap.
As hour upon hour the presents they'd wrap.
Then what from the TV did they suddenly hear?
'Cept an ad--which told of a big sale at Sears.
So away to the mall they all flew like a flash--
Buying some things on credit--and others with cash!
And, as they made their way home from their trip to the mall,
Did they think about Jesus? Oh, no--not at all.
Their lives were so busy with their Christmastime things
They had no time for Christ Jesus, the King.
There were presents to wrap and cookies to bake.
How could they stop and remember the One who died for their sake?
To pray to the Savior--they had no time to stop.
Because they needed more time to "Shop till they dropped!"
On Wal-Mart! On K-mart! On Target! On Penney's!
On Hallmark! On Dillards! A quick lunch at Denny's!
From the big stores downtown to the stores at the mall
They would dash away, dash away, and visit them all!
And up on the roof, there arose such a clatter--
As grandpa hung lights--using his new stepladder.
He hung lights that would flash. He hung lights that would twirl.
Yet, he never once prayed--to Jesus--the Light of the World.
Christ's eyes--how they twinkle!
Christ's Spirit--how merry!
Christ's love--how enormous!
All of our burdens--He'll carry!
So instead of being busy, overworked, and uptight--
Let's put Christ back in Christmas--and enjoy some good nights!


 

Wade Hello

Nov. 24, 1961 - Oct. 4, 2003


Living with a terminal disease never quite prepares you for the inevitable.   You always want a few more days, a few more visits, a few more phone calls, another movie, another football game. Wade has been a silent hero for many years because of the positive, intentional life he led in spite of the ominous opponent called Cystic Fibrosis. He was diagnosed in 1977 and spent 26 years coping with the limitations of Diabetes and CF. God's gift of a new life came rather suddenly to Wade while he was at his home on Saturday, releasing him from having to suffer more difficult hospitalizations and continuous treatment. Wade was a model to everyone he encountered for his incredible courage, endurance, commitment, and positive attitude. Wade is survived by his parents, Jack and Darlene Hello of Austin; sister, Amy Hello, of Round Rock; plus numerous other extended family members in Texas and South Carolina. Wade graduated from Anderson High School in Austin in 1980, and he received a Bachelor's Degree in Business Administration from St. Edward's University in Austin in 1989. He was employed as a Staff Accountant for Austin Regional Clinic until taking disability from his job in 1996. In 1998, through the guiding hand of God, Wade found the love of his life, Debbie (and her children). Brought together by the ugly disease they had in common, they shared a beautiful, loving relationship until Debbie's death in September 2000, also from CF. He felt very blessed to have loved and been loved. Though physically restricted by the confines of his disease, he did not allow the disease to define who he was. He was an avid sports fan of the Texas Longhorns, the Dallas Cowboys (even in bad years), and the Texas Rangers. He was the league commissioner for a fantasy football league consisting of friends for over 15 years. He was a fun-loving competitor, and he stayed occupied with movies and music. Wade had many friends who helped him along the journey he has traveled for nearly 42 years - a phenomenal life span for someone with CF! We invite you to join us at a Memorial Service in celebration and remembrance of the courage and character of this special man on Monday, October 13, at 6:30 p.m. at Church of the Savior, 3402 Little Elm Trail, Cedar Park, Austin, TX. Wade would have preferred casual dress! We'll celebrate his beliefs, his music, his interests, and we'll share food and fellowship. In lieu of flowers, Jack and Darlene have requested memorial gifts to the CF Foundation (Central TX Chapter), 505-B West Lynn, Austin TX 78703, or to Church of the Savior.  

     

    "Life is measured by its depth, not its length."

    -- Dr. Joe Phelps (at the memorial celebration for Wade Hello 10/13/03)

    Lori,                                                                    December 2, 2003

    What a privilege and a blessing it was to speak with you in our long telephone conversation yesterday. I feel like I found a new friend.

    We were so grateful for your donation to our church and to receive your long letter introducing yourself and telling us about what your relationship with Wade meant in your life. It is truly a blessing to parents to read those words from someone they have never met.

    There appears to be a common thread between your life and Wade's life. You both were born with a gene that caused a part of your body to operate in a defective manner. You both later contracted a bacteria that restricted you in many ways from being as interactive with other persons with CF as you'd like to be. These facts brought you to meet in a CF medical study for which you both volunteered. You then became friends and encouragers for each other. But the most common thread that I see between you is your courageous spirit that empowered you to keep on "keeping on". I see within each of you the commitment to live life well and fully - grabbing all the gusto you can along the way. Maybe the cloud of CF hanging over your head gives one a sense of urgency about doing things and not procrastinating. Maybe it makes some of life sweeter and not to be taken for granted.

    Often, those of us who don't wake up every day dealing with disease as a constant companion, are lazy. We whine a lot over small inconveniences in our lives. We are not thankful enough just to be able to get up, take a deep breath, and do our daily routine, without giving a second thought to helping our body handle the tasks of breathing, eating, and doing nebulizer treatments 4 times a day. You and Wade have given us a wonderful gift. You have modeled for us what it's like to walk in your shoes and be thankful. Wade shared with some of us for the last year or so that he felt he had a good life - he said he'd had great parents...he'd found the love of his life...he'd been a step-parent for a short time...he had loved and been loved...what more could you want? In that statement, there was no complaining about being dealt a bad hand...or the unfairness of having a life-threatening disease. There was only gratitude. And Wade constantly lived that attitude with us (his parents)...always thanking us for every little thing we did for him and reminding us that he loved us.

    We feel incredibly blessed to have been Wade's parents. He left a wonderful legacy that will live on. And the lives he touched, such as yours, will in turn touch ours and others in new and fresh ways. We look forward to getting to know you and following your journey with you. And whether that road takes you to new lungs or living a full life with the old lungs, we know you will do it right with God's loving guidance. God has brought you this far, and he will see you through it. As the words to the hymn say: "Strength for today and bright hope for tomorrow, Great is Thy faithfulness, Lord, unto me."

    Love,

    Darlene & Jack Hello

     

    My dear new friend, Lori...                    December 15, 2003

    I share your pain in reading about your transplant cancellation. I know this has been your total focus for the last few years. Perhaps that news would have been easier to hear if they'd never put you on the list. But having been there and having been hopeful about the surgery, it's very difficult to re-group and change directions.

    Lori, there is one line in your diary that I was disturbed about: I am ready to walk away from everything and die at home. I hope that was only your disappointment and anger being expressed. I know that you are a person of deep faith (from talking with you and from reading your journal), and I believe that you also believe that God is in charge and He will take care of you, regardless. May I be so bold as to suggest that you repeat that same sentence, I am ready to walk away from everything and die at home but substitute the word "live" for "die"?  I can see by your website that you do indeed live a full life. And I'm betting that once your original grief over the transplant being canceled is past, you will again call on the deep spiritual faith that lives within your soul to pick you up and put you back on the road again. I hate to quote scripture to people because it sometimes sounds so egotistical and holier than thou, if you know what I mean. But a passage that came to my mind is found in Romans 8:28. "We know that in everything, God works for good with those who love Him, who are called according to His purpose." That is YOU, Lori...you are definitely called according to His purpose. You are a believer, a follower, and a good disciple.

    I may have told you that I am the instrumentalist at our church - Church of the Savior - a small American Baptist Church here in the outskirts of Austin, Texas. I added your name to our list of Celebrations and Concerns on Sunday. We prayed specifically that your soul would indeed be soothed and that God would give you the strength to move forward.

    Because of my musical background, I have an interest in how hymns were written and some of the history behind them. I have always been moved by a particular hymn, entitled: "It is Well With My Soul" after I found out that the author (Horatio Spafford) penned these words in 1873: "When peace like a river attendeth my way, when sorrows like sea billows roll; What ever my lot, thou hast taught me to say, It is well, it is well with my soul." The remarkable thing is that he wrote these words upon learning that his entire family (wife & children) were lost at sea when a ship sunk in a huge storm. I've always admired that kind of faith in the face of such a loss and have hoped that I would someday feel that kind of confidence and assurance that God loves me and He is in charge. I played this hymn as the Prelude at church the Sunday after Wade died.

    Lori, please know that many (who have never met you) are praying for your well-being and for your continued faith in the God who holds you in His hand. I'm wishing for you and Brian a healthy, quiet, blessed Christmas filled with God's blessings and love.

    Christ's peace,

    Darlene Hello

 


Dear Transplant Team:                          Christmas 2003


 When Brian and I started out on the path to lung transplantation, we had only two choices: life or death. We know it was a last ditch effort to maintain my life. We realized from the beginning that although the actual surgery is now fairly routine, the post-transplant care is not necessarily so routine. Those who do well are sometimes lulled into thinking they will live forever. The difference in breathing is as night and day, so I am told by those who have had the chance to breathe again with new lungs.


When we hear about those on the transplant list who have died waiting for lungs which never came, or died as a result of complications, these deaths very quickly bring us back to reality. They frighten us, anger us and discourage us. The transplant team too, is also affected greatly. Day in and day out, you deal with the deaths of patients you have formed very strong personal relationships with and we look to you to carry on, hoping the triumphs outweigh the disappointments.


Please know that as your patient, hopeful lung transplant recipient and friend, I am extremely grateful for the skills, caring and compassion shown to Brian and I by the transplant team. I am grateful for the extra time you have given me to discuss my concerns and issues, and dream with me as I look forward to a future without the pulmonary problems living with CF has challenged me with.


Brian and I hope and pray that you and your colleagues will be encouraged by the successes you contribute to and by your patient's gratitude and support.


Sincerely,

  Lori

 

 

The Dash

 

I read of a man who stood to speak
At the funeral of his friend.
He referred to the dates on her tombstone
From the beginning to the end.
 
He noted that first came the date of her birth
And spoke of the second with tears,
But he said that what mattered most of all
Was the dash between those years.
 
For that dash represents all the time
That she spent alive on earth,
And now only those who loved her
Know what that little line is worth.
 
For it matters not, how much we own;
The cars, the house, the cash.
What matters is how we live and love
And how we spend our dash.
 
So think about this long and hard.
Are there things you'd like to change?
For you never know how much time is left,
That can still be arranged.
 
If we could just slow down enough
To consider what's true and what's real,
And always try to understand
The way other people feel.
 
And be less quick to anger,
And show appreciation more
And love the people in our lives
Like we've never loved before.
 
If we treat each other with respect,
And more often wear a smile,
Remembering that this special dash
Might only last a little while.
 
So, when your eulogy is being read
With your life's actions to rehash
Would you be pleased with the things they have to say
About how you spent your dash?
 
By Linda Ellis 1996

 

 

Dear Lori...                                                   June 2004

I read your diary entries for 2004 through today, in fact. Lori, despite the prankster that I am, I will say in all seriousness, you are a true inspiration. I really admire your faith and your fortitude. I can not fathom how you have complete, unconditional faith in God. I have known too many people when faced with adversity, they either give up, or curse.

You hang in there, Girl Whether you live 6 months, two years or ten, it will be very short compared to the eternal life you will receive because of your love for God. Lori, I am not good at spiritual things. God and your husband know I am base, or, I guess you say, carnal. But, I believe that there is a person, a being who is in control of everything, even when the whole world seems, AND IS, spinning out of control. You are a good witness! I want you to have your lungs and I will pray to God that you have them. If He listens to sinners such as I, then truly He is the author of miracles.

Still no Chloe??? Darn it!

Seriously, though, you stay well and take care of yourself. I hope your phone rings soon and UNC will tell you to COME ON DOWN.

Sincerely and Always Your Friend,

---John C.---