Tag Archives: real

The Struggle is SO Real

This past week was horrid. Lots of mix-ups, including miscommunications at the hospital and among the doctors of our clinic. I ended up on the phone with our Allo Nurse for about an hour and a half yesterday after I sent an email to our doctor (who read it on vacation and asked her to please call me) about how things had been unacceptable as of late.

Cancer aware

It has also proven to be the most taxing ride our bodies, minds and souls have ever taken. Literally, Mark got super sick on Monday April 14th… today is the 16th of September!!! If anyone asked me if I thought we could last this long when it all started, I would have guessed- no. This has been five solid months of uncertainty, pain, heartache, grieving, surrendering to a life completely different from your intentions and plans and trying the entire time to have some sort of acceptance and some sort of strong fight as well as the ability to continually go with the flow and not allow yourself to succumb to the negativity and the suckyness of the situation. At times, I have run hard or done some kickboxing to fight through my emotions. Many times, I close my eyes and remember how it felt to allow myself to float in the waters of Belize as we snorkeled. Most of the time, though, my body seems to be struggling just to get through a day, let alone add to it any type of real workout.

Ribbon Color Chart Pop-Up 3

Until you come up against this kind of battle yourself, a life and death situation that lingers, I feel like it’s impossible to imagine all that goes along with it.

It gets more and more difficult for me to take care of the everyday little things in life- laundry, changing light bulbs, cooking, cleaning… these are all demands that by the time I come home to spend time with my girls seem so meaningless…. unimportant…. I ask myself, is this really what I want to spend the little energy I have left on?  I have to remind myself that my girls need a home that is warm and inviting and letting them know that they are cared for. I do what I feel I need to do and then I feel like collapsing.

Sunday, I spent about 2 1/2 hours bawling in bed. I literally said, “I feel like I want to quit eating and die a slow death.”  If I had not had some friends reach out to me, I may have called the doctor yesterday and asked for some medication. (Y’all know I don’t take medication!) Yesterday I went to Denver and Mark fell apart in my arms twice. Ladies and gents, this has gotten to this point. We need held up. The psychologist has told us we need to be in this boat together riding the hard waves of this great storm. If our family separates and we each stay in our own boat, we are just going to drift apart and ride the waves alone. So, we are riding together. We are having difficult talks, we are being honest with each other about our emotions and what is happening as we go through this as individuals and as a family.

It’s weird, because we don’t at all expect people to get it unless they have lived it and to try to find words to explain it all just doesn’t work. There really are no words that can express the difficulty of this.  I wouldn’t wish anything like this on my worst enemy, I can tell you that. And I try to remind myself, that when this is over, we will be able to use what we have been through to help others. I look back and remember how God has provided all along and I remind myself to trust Him still and that He is always good and will take care of us.

This battle has been long and hard, and it’s not over my friends. I was raised not to make more work for other people and so it is hard to feel like that keeps happening. My family keeps needing…We got the good word that cancer was gone last Friday, only to face the worst week we have had so far. At least with the diagnosis in the beginning, although unexpected, we had a definite plan of attack and we knew what to expect in many ways…

At this point, no one really knows what to expect. The doctor’s analogy is that it’s like being in a war and going through a mine field. You never know what you will step on at this point….

Mark is having what looked like Graft V. Host Disease from his endoscopies. His intestines are VERY fragile. He is in a TON of pain! Stem Cell transplants are different from other transplants in that they are not rejected by the body, rather, the stem cells reject the body and fight it as they adjust to their new home. It’s not all bad that this happens as it also means that they will attack cancer cells, but it is more than hard to be Mark Neu right now and have this new battle happening within your body, having not had much time with friends to speak of in months and missing your kids and your wife when they are away…and it is very hard to be me right now feeling torn as I live again (Still)  trying to take the best care I can of Mark in Denver and our daughters in Firestone. I can’t speak for my girls, but I just cry when I imagine their lives. So, if you are involved in our lives, I just want to prepare you, just about anything is possible right now if you are around us- but I think what all of us needs the very most is prayer, lots of hugs and unconditional love.

I hope you can continue to hang in there with us and be there with us. As I read in my studies, it is just as I suspected, PEOPLE NEED PEOPLE. It’s so much worse to go through something like this alone. You would much rather have someone look you in the eye with fear or tears and tell you the honest truth that this shit scares them, they feel helpless or don’t know what to do or that they don’t like to see you like this and wish you were healthy but be present, than to just disappear and have to go through all of this feeling isolated and alone.

Cancer punch

CANCER, I HATE YOU!!!!!!!!!! I ABSOLUTELY HATE YOU!!!!!!!!!!!!

 

Clenched Fists/ Clenched Heart- Opening Up

I had quite a bit of time to reflect on things over the last week while Mark was sick and I sat quietly in his room watching over him.

This came like a revelation to me. I saw a picture of my heart closed up tight like a fist. (Honestly, this was very easy to imagine because I often notice while just sitting or even when I wake from sleep, my hands are fisted.) This fist represents a lot. First, it obviously represents a fight. We are definitely in a fight. Second, it represents tension. You don’t just ball up your hand into a fist usually in life- it happens when you are ready to punch something or someone, or when you are grasping a hold of something, tightly.

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In my situation, trying to engage in this battle, unlike any I have ever fought, and trying to hold life together for myself and my family at the same time, I can easily understand why my fists are often clenched.

However, the thing I hadn’t noticed until I had so much time to just sit quietly, is how the same thing has been going on with me internally. My heart has been like a fist. Trying to hold on and ready to fight at the same time.

The problem with this is that when my heart is clenched tightly, it is hard. Like a closed fist, when a curve ball comes in there is nothing soft there to absorb it or catch it- there is no “finess”. This explains why it’s been my first reaction to just be frustrated and angry when I get that curve ball. It’s like something is being thrown at me that just hits me- no absorption. No way to soften the blow -no way to receive it; it just bounces right off.

Tied to this is the fact is that I know our family is one strong machine in day to day living. We have moved not just to new cities, but new states three different times in about 10 years. We have home schooled and therefore decided to do without extras and luxuries compared to what we could have had and done if we would have chosen to be a dual, full -time income family. We have lost loved ones together- not just once, but a handful of times. These are examples of some of the struggles…. and none of them has put a dent in our strength, our faith, and our ability to keep making the most out of life.

This time it’s been the biggest test by far. Kids, living life with part-time (at best) parents. Responsibilities of running a home, figuring out schedules and taxiing and the like suddenly shoved at them full force. An exceptionally active mom, giving up all activities and normalcy of her life to become the servant between two places to two different groups trying to keep them both accustomed to life that seems as normal as she can, while grieving all that she has left behind herself. A dad, used to being the bread winner, and strong, never-sick-a-day-in-his-life hero, suddenly unable to walk more than a foot or two without being winded and needing to rest. A guy, who if you asked him, would tell you that when you take coaching basketball and being with all of his kids and wife is like taking drugs away from a drug attict – who lives without those constants as he battles. And so, there is more change, and those changes for these parents, bring even more change for   the kids. They see their mom struggling to identify how to live and how to live with joy. They see their hero fighting a battle and getting more and more slim and the battle getting more and more difficult for him as he goes. So, I know these kids want to help. They want to be strong, have compassion and keep going- because this is how they have been raised. But, you see this is hard on everyone. And the way it affects one, absolutely affects the others, because that’s the kind of family we are. We have always done everything together…. until recently. And sometimes, now, the people in this family feel alone.

This is where the devil wants us. He wants to destroy. He wants to try to break our faith, joy and love. Separate us from each other and from God. He loves to make us think and feel we are alone. I am reminded that this is indeed the biggest battle of our lives- it’s against him. Our battle/struggle :

Ephesians 6:12- For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.

But, as I remember that and see that actually happening so strongly in our family right now, I reflect on this:

1 Peter 5: 1-11

“To the elders among you, I appeal as a fellow elder and a witness of Christ’s sufferings who also will share in the glory to be revealed: Be shepherds of God’s flock that is under your care, watching over them—not because you must, but because you are willing, as God wants you to be; not pursuing dishonest gain, but eager to serve; not lording it over those entrusted to you, but being examples to the flock. And when the Chief Shepherd appears, you will receive the crown of glory that will never fade away.

In the same way, you who are younger, submit yourselves to your elders. All of you, clothe yourselves with humility toward one another, because,

“God opposes the proud
but shows favor to the humble.”
Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.

Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen.”

I think this passage speaks volumes to and about our entire family right now. I know, I can’t believe Mark and I are actually elders – we are both getting gray and growing older, though, and this speaks to my heart. Everything in me has felt like I need to shut everything else out now… but I don’t. The opposite is true. I need to continue to shepherd the flock- that is first and foremost my kids- my family… but I am a servant – and must be willing to serve HOWEVER God is asking me to right now.  And even though there are many new responsibilities on my kids, they have to continue to respect us elders and submit to us and serve. We all need to be aware of the fact that the devil is up to no good and trying harder than ever to destroy us, so we must hold tighter to our faith. Having a humble spirit and thinking of others before yourself is imperative right now. Giving our cares to God and trusting him, believing that He will continue to make us strong and that He will restore us. We certainly are not alone!

I’m unclenching. It takes too much energy to keep your fists and for heart all balled up!

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I believe there are people out there on this same kind of journey and that is why I share HONESTLY from my heart with people so publicly. There is no shame in the difficulties we face in life- we all share them, just not everyone is so willing to let you know you are not alone by sharing their own struggle.  I don’t look at this sharing as being negative – I look at it as being REAL. Only when we are REAL can REAL change happen.

God bless you as you struggle. Each of us does in our own ways and in our battles. I hope me sharing this struggle, gives you encouragement as you fight. Don’t give up- just give your cares up and TRUST and PRESS ON! <3

Callico