Wednesday, July 8, 2015

Broken Hallelujah

Last year, I wore my "HOPE" outfit. Last year, I lived in a world that felt like a constant battle. Sometimes it was a battle to advocate for my husband, fighting to keep my children's lives as normal as I could, fighting to stay strong for my family, fighting to take care of myself.... I had never been in a battlefield like this one- so I prayed and did my best. For some my best wasn't good enough and I eventually reached the point that I passed my people pleaser mentality and decided my life was better without them in it. (That actually took me about a year to do! Oh why of why do I worry what someone else thinks when I know we all have one judge?)

Fast forward to this year...... CRAZY!!!!!

Especially this past couple weeks.

You hear the doctor tell your husband that one of three things will end his life, cancer, chemo or fungal infection and then they offer him to go home and you have said from the beginning, a beginning of 16 months ago that you JUST DONT WANT HIM TO SUFFER NEEDLESSLY.
You see, I am a Christian. I don't believe death is a part of God's original plan for us and I DO believe that when we leave this world, there IS NO MORE PAIN AND SUFFERING. NO MORE SICKNESS. NO MORE TROUBLE. I would rather know that he is healed and in heaven than struggling on this earth with a pain and suffering I can only imagine and watching him fight against it all..... that is one of the hardest things I have ever seen in my life. The second hardest thing I have seen is watching our four daughters watch it, too. If he can beat it, then by all means, fight. But, if you can't.... don't suffer needlessly.

So, I felt like they were saying, "There is no hope." I put on my "I will be strong through this battle." outfit, if you will. I also have researched and studied and I realized that the AML coming back wasn't at all favorable. I realized that adding to it pneumonia, a fungal infection on the brain and the fact that induction chemo did nothing to the cancer was simply NOT GOOD.
The odds seem stacked more and more against us this time.

The doctor said that some of us are more guarded now ... and that is true of me. I am. I have always prayed against having a hard heart and this is the hardest my heart has been in my whole life. I have seen the unfair and hurtful judgements of people and the unfair harshness of sickness and my heart is very guarded. I am guarding it for me and I am guarding it for my kids. I literally often feel like I am waiting to punch someone or something at any given moment - to take someone down.... I feel like a warrior. I am not a fighter, by nature... I am a lover, a peaceful person, a hippie. This is all new to me.

Two days ago, the doctor said that if his marrow showed any sign of cancer, they would be unable to do anything else for him. Yesterday, they said they will now allow up to 20% cancer cells to allow him to continue to fight. 5% or less  is required for remission. I never have claimed to be logical.... but...None of this is making sense to me. The doctor told him, he feels like Mark should fight, but if at any time, he says he is done fighting, that is ok.

How can you go back and forth so much concerning something- especially a life or death something??? It is hard to adapt for me especially in the midst of preparing myself still from the last news only to get new news to prepare for again, in a different way. How could you be ready to let him go home two weeks ago and then swing over here? I don't feel like I trust the doctors now. I don't feel like I trust anything.

Mark, if you want to fight, fight. I will fight with you. If you want to stop, stop. I will be there to support you. No choice is an easy one and none seems fair. I am sorry you are going through this. I am sorry to watch our kids go through this... and your family. I feel empty and helpless....

So, there is a song I sing right now... a song that resonates from within....
 "Broken Hallelujah". The Afters

Tuesday, June 23, 2015

Healing- One thing you can count on.

Holding my baby girl in my arms as she asked me the tough questions...
"What if he doesn't make it?" "This could end badly, couldn't it?"

I tell everyone that I am the kind of person who hopes and prays for the best and prepares for the worst. I need to know the spectrum I am dealing with. I have four kids to think about.

Yes, this could end badly. I would be lying to you if I said I knew that everything this might not end poorly. None of us have that guarantee in life. No one knows what could happen- I could walk out into the street and be hit by a car tomorrow.

The first church we went to was a church called the Chapel at Blendon. A woman had cancer and she had her hands lifted as they prayed for her healing. When they finished, she said, "I will either be healed here on earth, or I will be healed in heaven with God." That has always stuck with me. That is how it is with all of us. We pray for healing and we WILL be healed. Either here on earth, or in heaven with God.

Is that comforting? in some ways it's not- Not to the people who love you- who want more time, have plans and need you. But, to know that if healing doesn't happen on earth, having the peace that it happens in heaven- no more pain- no more suffering. That is hope! No matter what, you WILL BE HEALED!

Monday, June 22, 2015

Being "with"

One thing last year that I did not do near enough of is spend time with my adolescent daughters through the biggest trauma of their life- their dad having Acute Myeloid Leukemia. I was torn between two places and it was easy to physically see who needed me most. Him- he was anemic, getting transfusions, fighting cancer and affects of chemo.... He was physically sick. You knew by looking at him.
What you could not visibly see is the torment, torcher, confusion and heart ache that my daughters went through.
What was I going through? Who even cares. I was in fight mode. I was fighting for all of them. I didn't take a lot of time to think about how I was. I knew I needed occasional breaks. I knew I needed to rely on people to take care of everything else because I had my hands full with these five. I knew I needed to work out and to stay positive and to vent some.... But life was about them. Mostly about him.
I respected the wishes of my husband and my kids. They all felt most comfortable only having me stay home with them or me stay at hospital with him. I allowed a lot to be on my shoulders. I respected their wishes and I leaned into everything that was happening as if immersing myself in water and allowing the current to take me in whatever direction it needed.
I did not see the things my daughters needed as much- because it wasn't apparent on the outside and because I wasn't around them much. They are designed a lot like their parents and most people and are pretty good at making themselves "look good" to outsiders.
This year, I have help. I am thankful. This year, I can help my sister-in-law help my husband fight and I can be with my girls more. They have already been through hell.... and that hell took its toll. This time I am glad I can be here to at least make sure they have a person here - some stability in their life. Some structure and reassurance.
I have been with people who have suffered loss and stayed up right beside them all day and all night. Sometimes it isn't in what you say or do- it is simply in the being "with" that is most helpful and most meaningful. You don't have to have all the answers and you don't have to fix things... just being there... that can mean the world.
This part of the journey is comparable to depression. You can't see it the way you can see a person has a broken bone- but both hurt and both need to have help in the healing process.
Many people have told me they are also "with" me. Those words and that action means the world.
God bless you!

You don't know

You don't know - you think you know, but the reality is so much more happens behind closed doors than people imagine. 
You think you know because a person shares with you what happens, or how it feels... but the reality is that you compare it all to your own experience... and it is not your experience at all- so you don't know.
It is empathy that makes you relate... RELATING is NOT KNOWING.
I have discovered that it is the case with many people- to realize this phenomenon and to respect it. To talk to a person going through something and to understand that they personally don't know, but might be able to relate. That because they don't know, they can't judge- but they can choose to be there- or they can choose to walk away. Being there is what gives a person more insight, more understanding... it doesn't mean they will ever know. But they will have supported and loved a person through something big and powerful. Being there with that love and support is often the biggest gift a person can ever give or receive. 
Allowing a person to be on their journey and to learn from it because it is their journey is often hard- especially when you want to help them and think you know what is best. But, what is best, is not trying to be more than God is in their life. Not trying to control them or make them see or do things the way you think you would- again- the way you THINK you would because you DON'T KNOW- you haven't experienced life quite like another person has. God gives us free will. God gives us free will and then tells us to love and not to judge lest we be judged. God has each of us on our own path- a path designed specifically for us to help us grow... let people grow and learn. Respect that you don't actually know, even though you can probably relate.

Wednesday, December 31, 2014

The Struggle... Weeding

My whole life I have been forgiving. Chosen the high road. Focused on positive.

This year was the most difficult of my life mentally, emotionally and physically as our family's entire life changed when my husband was diagnosed with Leukemia. Everything and I mean absolutely everything changed. My roles. The amount of time I could invest in anything other than taking care of my husband and my four girls diminished to being pretty much non-existent. I didn't sleep in my bed or any bed for about 4 months out of six... maybe more. I could not hang out with friends. I could not attend my kids' events. I no longer taught my fitness classes. Grocery shopping- planning meals, cooking- what were those things? Asking for help? I went from being one of the most helpful people I know to being in need of the most help. I felt as though I went from being healthy and having a great life to being helpless and sick (without actually being sick).

The strangest thing happened. In the midst of me trying to do what was best for the five people in my life I had to bare the biggest responsibility for, and keep my own head above water so I could actually function enough to still do that,  I had some people who simply said, "What do you need?" and they did whatever it was no questions asked. I had some who knew I wasn't thinking clearly and they just did SOMETHING, ANYTHING that they imagined might help. Others, though, they completely backed off- they disappeared. Or they became angry as they disliked a choice I made or the way I handled something. I had a flood of people I never really knew before becoming my biggest support and I had some that I thought might be my biggest support in a time like this who were just not there- or even worse- made a huge freaking stink of a drama and put even more crap on my already way too full plate. Then there were also those who lingered. They didn't push their way in to be present, but I knew that if I called them, I could count on them.... they called once in a while or sent a card. I am forever grateful to the many, many people who were there. Who didn't judge me at the time in my life when nothing made sense- including my thought process and actions, at times, but chose to love me through it - whatever that looked like.

What a mix! I realized in this struggle that in reality, nothing changed. It was just that what already existed in people was magnified... Myself, included. And this might actually be my biggest struggle now.

A huge wake up call came to me over the past nine months. I had been told I lived in a bubble and boy did I! I ALWAYS looked for the best, focused on positive, overlooked the bad.... It seemed though, that through this time of crisis, the pain and strain and overload I was under, couldn't, wouldn't and didn't allow for any kind of leeway. I quite bluntly had to call it like I saw it. And, now, I am left feeling like weeds have grown in my life and that in large portion, I have allowed those weeds to grow and have not pulled them. Now, they need pulled and their roots are deep and they are sturdy and I wish I had noticed them growing before so I could have yanked them- but I didn't....I chose to ignore them and focus on flowers.... and now I struggle to do what I know needs done.

The struggle is real, but I can't allow the weeds to take up space in a beautiful garden when they suck the life out of things I purposely planted and water and care for that I want to grow. Including weeds that attack me- almost as if they are poison ivy..... those weeds are the most deadly. I picture that old cartoon where the weeds reach over and strangle the plants beside them and that's how I feel. They make me feel like I can't breathe, like I need to escape.

Thursday, December 4, 2014

I Hope You Dance

I'm going to share a piece of my story that was a very painful part of my life. I am sharing it simply because I hope it encourages you to talk and lets you know that if you need someone who will listen, I will, without judgement.

When I was in the end of my 5th grade year, I was 10ish? My very best friend (only the second best friend I had ever had in my life because we moved so much) called me up after school to see if I wanted to go on a bike ride with her. I was home alone, but always a responsible kid, so I told her I couldn't go because I had some things I had to do at home- chores- I told I would go with her after I finished.

Before I knew it, my phone was ringing and kids from school were calling me and asking if I was ok. They were telling me my best friend died.

That seemed impossible. I just spoke with her. Someone was playing a not funny joke, I thought.
Pretty soon a friend that I trusted who was pretty mature for his age called me and asked if I was ok. I told him about the not funny joke and he told me it wasn't a joke. He told me to call and talk to her mom. He told me she had been hit, by a drunk driver while riding her bike. He was there. I knew it then that it must be true. I could hear it in his voice.

I called her mom. It was true.

I was still home alone and I threw everything I could around our apartment. I was so ANGRY. How does this happen? WHY does this happen? She was so young! She was my best friend!

And then, GUILT. I was supposed to be with her. What if I was there? Maybe I could have caught her as she flew back down from the air? Maybe I would have been hit and not her? I SHOULD HAVE .....This is my fault. I could have stopped it. I still cry as I type this, because I can remember that pain.

I considered ending my life. I didn't want to live.

"Rainbow Connection" was the song they played at her funeral- she loved that song.... and to this day, when I see a rainbow or hear this song, I think of her.....

I went on living, though, I cried a lot. I hurt a lot. I lost more loved ones in between then and now. I also saw a lot more of the world, I met a lot more people. I made some new friends. I moved some more. Some of the friends I went through that with - and her mom and her little brother- are still in my life today. And you know what? We all remember that pain. But, we all also have learned a compassion for others that I am not sure we would have if we hadn't gone through that pain.

Years later, when my oldest daughter was 9, my next one, 8, then 6 and 4..... she lost her best friend- they all lost a cousin they loved tremendously. She was also hit by a car- but he wasn't drunk and she wasn't on a bike. Our whole family felt those feelings again. Anger. Then guilt.... It was a very powerful thing to be able to know how my daughters felt because I had been there. It was good that I could walk them through the feelings they had, listen to them, let them be angry, let them know I understood them feeling guilty- even guilty that they could go on dancing and singing and living without her, let them be sad and crumble in my arms, just let them be.....

But I could offer them a hope that this wasn't going to last forever. I could tell them about my own story and how painful it was, but that it didn't last forever. I could share with them that just as I came to know that my best friend would still want me to live and laugh and love and ride my bike... their cousin would still want them to live and laugh and love and dance and sing like they all used to do. Mostly, I hugged them a whole lot and told them how much I loved them. I wrote scriptures on note cards to give them truths to focus on whenever their mind pulled them in a different direction. I listened to them whenever they wanted to talk and I encouraged them to live and told them one day, they would see how this tragic loss would make it so they could be there in a way for others like I was for them- with a heart full of compassion because they knew what it was like to lose someone you loved so much.

That song, "I Hope You Dance" was popular then.... and it still makes me think of her. I told my daughters that I believed that the lyrics from the song would be the message their cousin would have for them.

Life is hard sometimes. It sucks sometimes. But, life has a lot of beauty to offer ....
Listen to this:

Monday, April 28, 2014

Here I Am

I'm probably just gonna ramble. I feel better when I write.
I have no answers - only questions in my mind.
There is no easy way of making troubles light.
But there is an easier way of taking on the fight.
I remember I don't stand alone, I don't sit, I don't breathe… I am surrounded by armies of angels and they are all around me.
It isn't even them I feel, at least I don't think it is. It is the presence of my Lord, his strength encapsulates me.
Here I am, His strength comes to me through people who walk on this earth by my side.
Here I am, His love comes pouring out from the many helping hands.
Here I am, His hand are wiping my tears with the hugs and embraces I feel.
Here I am, His hope it filling my life as I see every need being met.
Here I am and I call on the Great I AM, He is God, I am not, I won't pretend.
Here He is through it all and I have learned I can call on Him time and time again.

Sitting at the hospital watching my husband sleep ….. Callico S. Neu