Are You Honest With How You Feel??

Question from reader

I love when I get questions from the community and I always hope that my answer can help more than just the person asking the question. We all seem to undergo similar experiences in this life and I figure it can never hurt to share my own personal life experiences. 

Question:

I am meeting lots of new people who don't know anything about CF, or what that means in my daily life. I am very comfortable talking about what CF is and how it effects me, but I don't know how honest to be, and how best to explain it to people who don't know me well. To look at me you would never know (unless you saw me sick) that there is something "wrong" with me, so I find when I try to explain it, it's almost as if people don't quite believe me, or think I'm being overly dramatic about the time I put into breathing treatments, or how sick I can get. I don't know how to explain to my jogging buddy that I ran 2 miles with at 6:00am (feeling junky but not too bad) that by 9:00pm that same day, I was coughing up blood and had a fever of 104. I don't know what to say to a new mommy friend that I canceled a playdate with on Monday because I wasn't feeling well, that by Wednesday I had a PICC in and am now doing a full course of IV antibiotics. She, being a kind person, texted today (Friday) to see if I'm feeling all better, and the truthful answer is no. No I don't feel better, I actually feel worse. I can barely carry my baby up the stairs because it's that hard to breath. I'm exhausted because I've spent 2 whole days in and out of the hospital and hours in waiting rooms. But saying things like that freaks people out, and then they don't know what to say. However, pretending things are fine when they aren't isn't exactly a good option either for any kind of lasting friendship.

So how do you handle it? Where is the sweet spot between complete honesty, and pat answers like, "I'm getting better!"?

Answer:

The answer to your question is a tough one (as if you didn't already know that).

For me, I've rarely been totally flat out about how I feel with my friends and family. If I were to say "not great" or "pretty bad" I would always follow it up with "but I'll be alright" or "I just have to keep pushing". I've never wanted to put an unneeded burden on someone who really can't do anything to make me feel better. Sure they care, but they can't actually heal my lungs, do my medication for me or take my place in the hospital. I'm the only one that can do those things, so I've always internalized a lot of those different "I feel like crap" feelings.

In times that I feel helpless, I don't want to cause those around me to feel helpless as well.

Even with my now wife, I was very honest about what CF was, how it affects my body and what it could all potentially look like in the future, but I always quickly followed that up by, "but I'll work hard to make sure I'm always living the dream!".

Think about this too, will anybody around you ever really "get it" no matter what you say or how you say it? Probably not. The only people that could get it are others with CF or maybe other chronic illnesses. For me, I'd rather others in my life see me for my perseverance, positive attitude and faith in Jesus - than for something they will never be able to truly grasp.

Response: 

Thanks so much for getting back to me so quickly! That does help, and I think you are absolutely right. Thank you for affirming that for me, and for the encouragement to be positive. I am generally a very positive person, but this go 'round has been a little rough. I know you are right and so I will keep on, keeping on!

If, as a reader, you ever have a question for me, please never hesitate to send it along. You can send it via CysticLife, Facebook or my email address (ronnie@cysticlife.org)!

Did God Give Me Cystic Fibrosis?

Once in a while I get questions that really get me thinking. This was such a question. I'm no theologian or Bible scholar, but I have a deep love for God and believe in His deep love for me. I also don't think He makes mistakes. Most importantly, I don't think I need to know all of the answers. I only need to know one thing...God is in control and His eternal plan is a perfect one.

Question: 

I just finished having a really deep intense discussion with my 14 year old son (with CF) about God. Little by little he has started to share with me his doubts about God. After much probing by me I realized that some of his doubts are coming from the fact that he doesn't "get" how God who is suppose to be loving gave this disease to people. I answered his questions as best I could.  

You seem to have such a strong faith now; did you ever question if there was a God and how people could have this disease? If so how did your questions get answered?Any insight is appreciated!

That's a tough one. My perspective on this may be a little different though...

Problem is, I never once thought the CF was a terrible disease. I simply was raised to believe the opposite and my mom did a great job of always pointing out the opportunities that CF afforded me (I'm not saying that you're not doing that). She was always quick to point out the man that CF was molding me into. Quick to remind me of all the people I would have never met had it not been for this disease.

As far as my faith, I don't think God gave me CF. Sure, He allowed it to happen as He could have stopped it, but He didn't. I believe that CF is more of a tool used by God to shape my heavenly body than it is to destroy my earthly one.

He also promises to work ALL things for the good of those who love Him. It never says that everything that happens is good, but we serve a God that can take 100 bad things and shape them into something that brings Him ultimate glory. And that's what this life is all about for me. God shaping me into the man that will ultimately receive the joy of worshipping Him for eternity.

I don't get caught up too much in my suffering or the suffering of those around me. This life on earth is but a blink of an eye, and in the big picture, pretty "insignificant". I'm not living for the here and now, but the later and forever.

The one time I questioned God and His works was when my 16 year old cousin died in a roll-over car accident. It was sudden. We didn't have anytime to prepare. She was young, vibrant, beautiful and had a huge heart for the Lord. I wondered how in the world God could ever use that for His glory. I questioned why He would take someone who could end up doing so much for His Kingdom here on earth. I brought these and many other questions to my pastor.

What he said solidified my view on my own life. He said that each of us have a race to run. Some run it faster than others. Because some run faster, they will finish the race first (die). We're all running towards the same finish line, and as all of the other runners, the goal is to cross the line. Whether we finish first or last is of no consequence to God, it's that we finished and finished well. He watches how we are running. Once we cross that finish line we will be in His presence and get to hear the words that we all want to hear more than anything, "Well done, good and faithful servant."

When I took the focus off the death of my cousin and the sadness it created for me, I was able to see the joy it was bringing to her and to my Savior. He wants us in His presence more than anything else. The fact that my cousin got to see His face before me may be because she ran such a darn good race!! I may also never know why she was taken from this earth so soon, but I do have faith that God is true to His word and will work ALL things for the good of those who love Him and have been called according to HIS purpose.

So, why does God allow me to have CF? I don't know. I do however know that He doesn't make mistakes. I do know that He views me as a perfect creation formed in His image. And finally, I do know that one day, all will be revealed to me and will be more clear than it could ever be here on earth.

Like I said, this is a tough one, but hopefully something I said here will help you and your son.

How was your day?

Me: God, can I ask you a question?
God: Sure.
...
Me: Promise you won't get mad?
God: I promise.
Me: Why did you let so much stuff happen to me today?
God: What do you mean?
Me: Well, I woke up late.

God: Yes.
Me: My car took forever to start.

God: Okay.
Me: At lunch they made my sandwich wrong and I had to wait.

God: Hmmm.
Me: On the way home my phone went dead just as I picked up a call.

God: Okay.
Me: And on top of all that, when I got home I just wanted to soak my feet in my new foot massager and relax, but it wouldn't work!!! Nothing went right today! Why did you do that?

God: Well, let me see. The Death Angel was at your bed this morning and I had to send one of the other angels to battle him for your life. I let you sleep through that.

Me: (humbled): OH...

GOD: I didn't let your car start because there was a drunk driver on your route that would have hit you if you were on the road.

Me: (ashamed)

God: The person who made your first sandwich today was sick and I didn't want you to catch what he has.

I knew you couldn't afford to miss work.

Me: (embarrassed): Ok...
God: Your phone went dead because the person who was calling was going to give false witness about what you said during that call. I didn't even let you talk to them so that you would be covered.

Me: (softly) I see, God.

God: Oh, and that foot massager had a short that was going to throw out all of the power in your house tonight. I didn't think you wanted to be in the dark.

Me: I'm sorry God.

God: Don't be sorry, just learn to trust me in all things, the good and the bad.

Me: I will trust you.

God: And don't doubt that MY plan for your day is always better than your plan.

Me: I won't, God. And let me just tell you God, thank you for everything today.

God: You're welcome, child. It was just another day being your God, and I love looking after my children.

- Author Unknown

The Year Ahead

I'm not a big New Year's resolution kind of a guy. I figure that if I need a certain day of the year to get me motivated, then making some a "must do" resolutions is the least of my worries. I do however like to look at the year ahead and figure out some things that I would like to accomplish or continue to do. They're not resolutions as much as they are plans for the future.

My number one focus this year is my family. Not only do I want to be the husband my wife has always dreamed about, but I want to be the kind of husband that blows away her expectations. I know that she would never say this, but she deserves that from me. The day I was blessed enough to make her my wife was the day that she made my life complete. I was finally given the woman that God created just for me and I could not have been happier. She "checks off all of my boxes" and my hope is that I can check off all of hers...and then maybe add some that she never thought about.

I also want to be the dad that my precious daughter deserves. There really isn't a whole lot that I can do right now besides meet her basic needs, but I can prepare myself for the future. Part of that is taking care of myself physically and also being there for Mandi so she can take care of herself. If we're there for each other and co-parent like we've always planned, that gives us both the much needed mental breaks once in a while as well. As we anticipate Mckenna growing from an infant to a toddler to little girl to a teen; I just hope that I can continue to sharpen my skills to be the father that God created me to be.

A big part of that is making sure that I'm capable to be the spiritual head of this household. I'm sold out on the fact that God has already laid out a plan for our family that is perfect, and a big part of that plan is for us to seek His Will. That of course is always a tough thing. How do I know His Will for my life? I don't have a blueprint for my life, or my family's(although that would be nice), but He did provide a blueprint for all of humanity to follow. This year I need to be sure to open up that blueprint, focus on what it says, talk with the Author and then wait for His response.

There are also some other things that I'd like to see done this year, but compared to what I've already talked about, it seems very arbitrary. I'd like to continue to pour into CysticLife.org and make sure it's the space that the CF community deserves. I'd like to I'd like to replant and spruce up my garden. I'd like to do a couple of house projects, not sure what they'll be, but something cool. I'd like to travel with my family of three. I'd like to continue to reach a couple of people with this blog.

So that's what's in store for me (if I have my way) - what about you???

Trusting in His Will

First of all, happy belated V-day to all of you lovebirds out there. Mandi and I had (and I quote myself) "a day just like any other day, only today I got you flowers". Mandi said it was "perfect" therefore, I shoot, I score. Anywhoo, as most of you probably know, we had our embryo transfer on Monday and now we go into the waiting phase of this ever so lovely IVF game. I know that Mandi shared with you guys some of her feelings so I wanted to do the same. I'm not a big "feelings" guy, but many of you expressed how helpful it is when we really share our mindset throughout this whole process. I figure it can't hurt anyway.

Let me set some background. From the very beginning of this IVF process, all we've ever heard was "you guys are going to do great". This I'm sure was for a multitude of reasons, but it often came back to Mandi's age and the fact that, as far as they could tell, she had no infertility issues of her own. You would have thought that this was all just a formality and we could start decorating the nursery after our very first appointment. I can tell you this (and I think it probably rings true for a lot of women out there), when you have a wife who may have trouble managing her expectations, it's actually not what you want to hear. Since the beginning of this whole process I've been very aware of the fact that we could very easily get ahead of ourselves only to be hurt and let down in the end of this. The fact is, when going through the IVF process, couples have a better chance of "failing" than they do succeeding. Our doctor is one of the best in the state (statically speaking) and he still only turns in a 67% pregnancy rate, and please notice that doesn't say live birth rate. Needless to say, the odds were against us.

Knowing the struggle and heartache that could come upon us throughout this process we knew that we needed someone to lean on. The great part is that we're both blessed with incredible families and happen to be pretty connected with a very loving and embracing online community full of peeps that we have had the privilege of getting to know these last couple of years. Having those type of connections are great to have in our back pocket, but we knew we needed someone that was always going to be available for a chat or had a big enough shoulder for both of us to lean on. And thank God, we knew just the guy...literally, thank God.

We've turned this entire process over to Him. He knows the desire of our hearts, but the fact of the matter is, His desire is always perfect and ours is not. We've been in prayer with Him daily just asking that His Hands be all over this thing and that He would grant us a peace that passes all understanding no matter what the outcome. Now, it's much easier to throw out prayers and write blogs about this topic than it is to actually live it out. I think Mandi eluded to that a bit when she shared with you her moment of just needing to be alone in the bathroom after we got our embryo results. The great part about it is that we know we can't rely on our own strength to get through this, no matter what happens. No babies will be extremely tough. Babies will be extremely tough. I often hear people say "God will never give you more than you can handle". This is not only NOT in the Bible, it's just simply flies in the face of a sovereign Lord. God will give us more than we can handle if for only the fact that we're reminded that we must lean on Him and draw from His strength to get through it. If we were never given anything "too big" for us, than what's the point of having a Savior?

Point is, I'm sure glad we handed all of this over to Him. When the doctor showed us a sheet full of embryos that "didn't make it" I felt like all of my strength had been taken from me. The old expression "wind out of my sails" couldn't have painted a more perfect picture. But, just as quickly as I felt that feeling, a new and much more powerful sense took over, a sense of peace. And clear as day, and almost in an audible voice in my head, I started to hear a prayer that Mandi and I had prayed literally every day since this process began. "Lord, please provide the exact number of embryos that you would like us to have". We knew that number could be 10 and it could be 0. I then nodded my head and said to Mandi, "He wants us to have two". Here's the thing, He may provide more later and He may not, but right now I believe with 100 percent certainty that God provided us just 2 embryos out of the original 15 because that's exactly how many are perfect for us right now. My God doesn't make mistakes.

We could also come out of this whole process with no babies. That will of course be another blog for another day were that to happen, but I'm very comforted in another truth that I know about God. My God doesn't waste pain.