The Will of God

I wrote this journal entry in my journal November 9, 2010. Later that morning, we decided to take Tiffany back to the hospital. God was preparing me for the weeks and months ahead -- Don’t we serve a great God!

“I find myself going back to 2 Timothy lately.  This book has become a real source of encouragement and challenge to me over the last couple of years.  When I am going through hard times I usually come back to here as I have for the last three days. I didn’t get pass the first verse.

Paul, an apostle of Jesus Christ by the will of God, according to the promise of the life which is in Christ Jesus.

Two things jumped out at me today.

1. Paul’s position of life was established by the will of God. My position and status of life is clearly founded on the will of God.  Tiffany and I are in the situation that we are in with her health by the will of God.  I am president of IBC by the will of God. It is not my will but God’s will that I am where I am.

2. Paul lived based upon the promise of life in Christ. I must live my life based upon the promise of life which is found only in Christ. My identity is not found in myself but in Christ alone. Because of having this eternal perspective it gives me a foundation for living that is not myself but is Christ.  Who I am and how I live must be rooted in Christ. I am willing to faithfully endure because of the Life that Christ gives now and in the future. LIfe is not according to me but according to what Christ has established.”

The Value of a Good Nurse

Today I was reminded of the value of a good nurse especially a good home health care nurse. I was out to eat with a friend when I saw across the restaurant one of Tiffany’s former home health care nurses. This nurse is probably one of the best nurses that Tiffany had in our marriage and definitely the best home health nurse we ever had. She was great because she educated us and didn’t just tell us what to do. She taught us how to live better with all of the I.V.s and struggles that come with at home care. She is the one that taught us how to be independent with the port. Not only was she great because she educated us, but she was great because she genuinely cared. It has been at least two years since we saw her last but yet she remembered me and especially Tiffany.  Although it was hard to tell her of Tiffany’s death, it was a blessing to hear her remember Tiffany. She took time to listen to us today and the many visits that she was at our home. When it comes to dealing with a chronic illness, there really is nothing like a good nurse. They are of great value!

Midnight

The below was Tiffany’s second to last journal entry before she passed away, and I shared it with our church family this morning. I think this entry really points to the struggle that one faces with chronic illnesses but also reveals the hope and quiet rest that Tiffany had in God. Sometimes we think that God is only working if He gives us deliverance, but God is at work in our difficult circumstances and gives us His grace, strength, and peace.

“often i find that night time is one of the hardest times for me.  there is something about the stillness, the quietness that brings thoughts and emotions.  last night was a time of some frank discussions with my Lord.

there were some tough questions that He and I talked through....

why did he allow the cf? why was i the one blessed with it?  why couldn’t i just be normal and be able to enjoy a quiet life with my hubby-looking forward to many years together? why were we faced with these tough choices?  why is this sooo hard? why can’t it just be easy? i don’t think i can do this? i don’t want to live life like this?

it was a time of wrestling, of tears, of frustration, even sometimes anger and yet His quiet peace permeated it all.  i don’t have all of the answers and much is still raw, but i know i can rest in His grace-it is sufficient.  this is not out of his control...he is ordering each and every step. There were no new earth shattering revelations-just peace, a peace that it hard to explain-a quiet rest.”

Friday Fill-in -- Delighting in the Simple Things

Sometimes in the trials of life like what Cystic Fibrosis brings you need to just take time and delight in the simple things. When we go to one of favorite vacation spots our first and last stop is to a little store that sells ice cream, fudge, and huge variety of carmel apples. That little store has made a lot of money off of us! Tiffany’s favorite was a white chocolate carmel apple covered in cinnamon. That with some coffee made for a great treat. Take time to delight in the simple things of life. 

Never Thought About It Before

I think one of the greatest joys in marriage is when you do something for the spouse that they really enjoy or appreciate.  I just loved doing things for Tiffany whether it was something to do with her health or it was just everyday things.  I especially enjoyed doing things for her on special occasions like Birthdays and such. One of my really fun things would be to fix her a fancy steak dinner and get all of her nice dishes out and use them. It was just fun to watch her and to enjoy showing love to one another.

The day after Tiffany’s burial, her brother and I went by the old tree where Tiffany and I got engaged, and we noticed that one of the huge branches had fallen down in some past storm. The following day we went down and cut out the branch (about 18 inches round and 15 feet long) and brought it up to the ranch house. I had decided that I wanted to make a temporary grave marker so that there would be more than just a 3x5 card there until we got a permanent headstone. Well, over the course of the next couple weeks, I spent many hours cutting a flat surface, sanding down the 2 ft section I had cut off the log, routing in her name and dates into some cedar that I mounted on the log, and putting it all together. As I was working in my Dad’s woodshop routing her name in the cedar, I realized something that I had never thought about before -- Even following your loved one’s death, you still enjoy doing things for them. 

Is It Worth It?

Another question that ties right in with the question of “how could you marry someone with a terminal disease” is the following: was it worth it marrying someone who had Cystic Fibrosis? This once again seems like a pretty bold question but yet a question that some may be wondering if they are in a dating relationship or a marriage with someone who has a terminal condition. Not everyone gets to choose whether they will marry someone with a terminal disease because the disease may not show itself until after marriage. One of my good friends and roommate in college lost his wife while they were still in their twenties but yet I was supposed to be the one to lose his wife first. I also want you to notice that the question is not “Was” it worth it? but rather the question is “Is” it worth it?. You see, being married to someone with CF is not over for me. Tonight I went to starbucks and looked at pictures of Tiff on her mac as I took time to just stop and contemplate on the two month anniversary of her homegoing. Sometime soon I get to go to the CF clinic to deliver meds that can still be used by others -- being married to someone with CF does not end with the end stage of CF--it is a continuing effect in my life. So, looking back not only over the last two months but also at the last 17.5 years that I knew Tiff and looking forward to the years ahead that God may give me -- Is it worth it to marry someone with CF or a terminal condition?

I believe a key component to answering this question is having the right perspective on CF. I have read many blogs by CFers who live lives of anger and frustration and bitterness toward Cystic Fibrosis. The reality is that it is not an easy disease and that it does kill people much earlier than we would ever desire, but CF is not something to be angry about. I believe one of the problems is that people define themselves by the circumstances that they find themselves in rather than finding their identity in Christ.  For sure, CF shaped Tiffany’s life, but more than the actual CF, Tiffany’s response to it shaped her life.  Tiffany was not defined by CF, but rather she was and is defined by Christ and her faith in Him and Him alone. About a year ago, I had to work through some of these issues again. I found myself getting frustrated with CF and the hardships that it was bringing into Tiffany’s and my life. God worked on my heart again and brought me to the place where I could honestly say “Thank you God for giving Tiffany CF.” It is counting it all joy in the difficulties and trials of life not because pain and suffering and limitations are fun or “happy” occasions but rather that I can rest in God’s design for my life and my wife’s life. That God is using trials to bring us to a greater conformity to Him -- to teach us that we might change and give up our will to His will.

So I sit here in my house alone (o.k. our dog is keeping me company) having gone through the ups and downs of CF, having spent more nights in the hospital than I care to remember, having my wife die as I held her hand and quietly slip into glory, having experienced much of what CF brings and I ask myself, “Is it worth it?” YES!, it is worth every joy, trial, up, down, thrill, love, tear, loss, gain, difficulty, and experience as CF was uniquely used by God in Tiffany’s life to conform her to the image of His son and to conform those around her to the image of His Son. I have been changed forever by choosing to love that cute girl from CO who had a terminal disease -- It was worth it and I would marry her again!

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