What Great Love!

Here is a chorus for which a good friend of mine wrote some music. We sang it this last Sunday morning, and all I could do was weep as I thought of Tiffany enjoying the boundless love of Christ in His glorious rest above!


O the deep, deep love of Jesus, vast, unmeasured, boundless, free!
Rolling as a mighty ocean in its fullness over me!
Underneath me, all around me, is the current of Thy love
Leading onward, leading homeward to Thy glorious rest above!


by S. Trevor Francis

How Could You?

When I think back to my college days and when I first started dating Tiffany I had a number of issues and questions to work through.  I remember one of the guys in the dorm asked me how could I marry someone with CF who would die early. Although it was probably an innocent question at the time it was also an offensive question that someone would even ask it. The reality though is that it was a question that needed answered. Perhaps now I am better prepared to answer that question than I was 16 years ago when we started dating. 

When I asked my father-in-law for Tiffany’s hand in marriage, and we talked about the future ahead I simply told him that I loved his daughter. Tiffany and I were hitched 27 days after college graduation, and we were married for thirteen and a half years and one day. When I think of all the years that we spent together, my mind and heart are flooded over with such great memories. Memories of love, laughter, hardship, CF clinics, a little apartment, new houses, her grand piano, music, piano playing, recitals, ministry, family, traveling, IV treatments, vacations, crying, talking, planning for a life together, planning for dying young, dreaming, making her music CD, prednisone, grad school (in our thirteen years I think we only went one year when one of us was not working on a grad degree), business, choosing to slow down, Big Bear, the beach, college students, more health issues, diabetes, progressive issues, chronic illness, enjoying little things, God’s grace, ranch life, brandings, rural life, sinus surgeries (we lost count, around 5-7), city life, disappointments, successes and the list really could go on for awhile. As I look back, I am faced with that question -- how could I marry someone who I knew had CF and would most likely die young -- I love her. Yep, that pretty much sums it up -- simply put -- I love her! That is how I could marry someone who I knew in all likelihood would get to worship God face to face sooner rather than later.

I.V. organization part 4 -- Ports and when to get one

This is was my last post that I wrote last summer for the series on I.V. organization. Tiffany had posted all the other entries but had not gotten around to posting this one.  If you are interested in reading the others you can click here for the July entries and you will find 3 other entries about organization. 

This was a tough decision for Tiffany and I -- when do you get a port put in. A port is a semi-permanent (Tiff’s first port lasted around 4 years) line that is put in with a reservoir that sits right below your skin that you access with a needle.  To start IVs your simply put the needle into the port and you are good to go -- you are up and running in 15 minutes.  PIC lines are temporary and have to be placed in every time you do IVs. Usually they are now considered a surgical procedure so you have to get admitted to the hospital as an outpatient to have it placed.  Tiffany’s first PIC line after we were married was put in by her CF nurse in the office -- they don’t do that anymore. PIC lines are more fickle but then again, you don’t have something permanent in your body.

The hardest part of the decision is the feeling that your are giving in again to CF and that you are progressing. To have to need a port makes you feel like you are in a different stage of treating the disease. We finally based our decision on the number of times that Tiff would be on IVs.  We felt like if she was only on them once a year, it was worth the hassle of the PIC line so that everything was temporary.  When she needed to be on IVs more than that we decided to get the port.  We are very thankful that we made the decision to get it.  This year Tiffany has been on IVs three different times. Of the last 7 months, she has literally spent 50% of the time on IVs -- having a PIC line now would be miserable.  Once she had to be on IVs for 5 months to treat mico-bacteria. The port gives us convenience and speed of therapy.  We can go to the Dr., decide to go on IVs, and have them running that very same night -- that is usually not possible unless you check in to the hospital if you have a PIC line.

For us, the port has given us more control and convenience and it is when you reach that place with treating CF, you should strongly consider getting a port, because the reality is -- CF is progressive and you probably have reached the next level of treatment to maintain your health.  That doesn’t mean you are giving in, it just means you have to be more aggressive in the treatment in order to stay healthy -- and that is the goal -- staying as healthy as is possible in God’s plan.

So this concludes what started out as a simple explanation of our IV organization but turned into a diatribe.  Would love to hear your tricks of the trade on how you organize and what you do to help maintain your health!

Updated title, description, and about me

Well, I was advised to update the title, description, and “about me” section so I have made a stab at it.  Hopefully it clearly communicates what the blog is and what it is about. I found the following description of what Tiffany hoped that this blog would accomplish. She wrote this back in April.

“Starting this blog has been a long process--a long process in evaluating whether the transparency necessary for a blog of this nature would be worth it. A good friend of mine (and many others) has been challenging me to share with others what I am learning as I live the life that God has given me with Cystic Fibrosis.  The intention of this blog is to inform others about CF and practical ways of dealing with it, to encourage a dependence on our only sustainer (God), and to promote a Biblical view and response to life. I hope that as you read what is in my heart, that it will help you in your life.”

I am looking forward to carrying forward what Tiffany began.

Our Inner Strength

So where does the inner strength come from in order to handle the difficulties of life.  The more I understand what all Tiffany went through and understand her personal strength the more I am coming to understand where her inner strength came from to handle those difficulties. Tiffany’s greatest strength was not physical with the ability to fight but it was an internal strength with the ability to rest in God. I think God specifically had her studying Ephesians and the gospel because understanding who you are in Christ is that key. Eph 3:14-20 are key to understanding.

It is by understanding who we are in Christ that we are strengthened. It is according to the riches of His grace and in the context of Ephesians it is according to how much we overwhelming have in Christ because of who He is and what He has done for us. My strength is not rooted in who I am as a person, but it is rooted in who I am in Christ.  When I understand these great riches of who I am in Christ, then that strengthens my inner man because my identity is not based in me but in Christ and His grace.  Understanding who I am in Christ helps me understand the love of God and then I am content and willing to do God’s will for me life. That road may not be easy, but when I know how rich I am in Christ I love him more and am willing to follow him anywhere.

What is needed most to handle the trials of life such as a chronic disease is not physical strength but rather inner strength. Our greatest battles were not physical but rather emotional and spiritual. When I understand this reality, then it helps me focus in on what I actually need.  I need to know who I am in Christ and what I have because of my faith in the gospel of Christ that salvation is by faith alone in Christ alone. The key to battling any type of physical hardship is the inner battle -- I must endeavor to know my God!

My First Night

Written last Wednesday.

Last night was my first night alone since Tiffany’s passing. I miss her. Because I had a dinner appointment with work I didn’t get home till 8:30 so that made the night go quicker.  Honestly, I think the day was worse anticipating the night than the actual night was. It was not a night of emotional breakdowns but rather it was another step in the finality of my life situation that Tiffany is no longer here. How weird it was to drive up to my house at 8:30 p.m. with having not been at the house since I left for work in the morning. I could never do that before if I was going to properly take care of Tiffany these last six months or it would have meant that she would not eat till 9 p.m. My schedule change so far has been one of the biggest changes.  CF took up so much time in our life. It was not something that was despised or to be mad about it, it simply was our life. I also see now that my life choices have to be much more deliberate because before Tiffany’s health would dictate so many of our choices while now my choices are simply dictated but what I choose to do or not do.

Friday Fill-in Catch Up -- Never Thought About It

I am going to start a new series of blogs that will come and go as life happens.  They are called “Never Thought About It.” You see, when you live with someone who you know will most likely die at a young age you have some very interesting conversation, and you think through many things about what life will be when the Lord finally does take that person home. This series of entries will be about those things that I never thought about -- some will be serious, some will be funny, and who knows what the others will be because I simply don’t know what they will be as I have never thought about it.

One of my first ones happened the Saturday after Tiff’s memorial services.  I had just dropped my brother-in-law off at the airport, and I needed to stop somewhere for lunch. Well, right now I am going through a lot of firsts without Tiffany and that was the first time that I went out to eat alone following Tiff’s death. I decided to go to Taco Bell (not because I really wanted to but because that has always been one of Tiff’s favorites) and finished eating.  I had a two hour drive ahead of me, so I decided that I had better use the bathroom before I leave. Who in the world is supposed to hold your drink for you when you have to use the bathroom at a restaurant and you are alone? I am not sure as I never thought about it before!