Life is tough my darling, but so are you

Life is tough my darling, but so are you. Stephanie Bennett-Henry

You never know how tough and strong you can be until you have a sick child. You want to run and hide. You get angry. You scream. You cry. You feel helpless. You feel fear. You don’t understand all the big medical words.

Confusion sets in. You feel small, helpless, weak.

You fall to your knees. You look to the sky. You pray.

You find strength. You find hope. You find understanding. You find peace.

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She Made It – A Little Snippet on My Thoughts of Mallorie’s Last Chemo Shot

1510006_747034938705261_5810347543368150990_nI just saw Mallorie’s tweet……”19-hour countdown and then bye bye chemo.”

I have imagined in my head many times what this day would feel like. The day when we no longer have to plan our lives around cancer. And in less than twenty-four hours, Mallorie will receive her last shot of methotrexate.

Emotions are a bit overwhelming at this moment. I think back to the beginning. The beginning of Mal’s journey, our journey. It was so unexpected, this diagnosis the doctors called leukemia. At that time, leukemia seemed like a monster trying to steal from me, my little girl. Now, it’s all gone.

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Mallorie’s battle was one with many twist and turns. Rough, exhausting, painful, and unknown. She lost her hair, she lost weight, she lost strength, but she never lost her spirit. She had good days. She had bad days. She had days she wanted to give up. She had days she told me to not give up.

There were tears. There was laughter. There was anger. There were screams.

Watching Mallorie slowly start to wither away in the early stages of treatment is something I will never forget. Flesh on bones. Shunk in cheeks. Frail and weak. Makes me nauseated just thinking of it. Thankfully, we had a fantastic Oncologist and wonderful nurses.

Speaking of nurses, we were blessed by so many people, but the ones who kept us going were the nurses. They became immediate family. Seeing us at our worst. Giving the meds. Hearing the cries of pain. Lending an ear in the middle of the night. The nurses are heroes.

 

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Days turned to weeks. Weeks turned to months. Months turned to years.

Mallorie got stronger. Her hair came back. (Curly and brown. Before cancer, it was straight and blonde.) She grew. Hospital stays decreased. Lengthly chemo stop. Port came out. Things were semi-normal.

Now, hours away from her getting to ring the bell. I am excited. She did it! We did it! By the grace of God and prayers. By wonders in medicine and skills of our doctors, Mallorie will be heading into her Freshman year cancer free. Mallorie Wall

Just Keep Swimming.

 

You Just Don’t Know How Far You’ve Come Until You See Where You Are Now.

I forgot to post this photo over Christmas. The picture on the left is from 2013 about a week after Mal was diagnosed. When we were at the Wichita Littlest Hero’s Christmas Event, Mallorie wanted to replicate the photo from 2013, so that is the photo on the right. Sometimes you just don’t know how far you’ve come until you can see where you are now. From a straight-haired girl to a curly young lady, we are thankful for such wonderful progress.

 

Christmas redo

Speechless

Heavy on my heart this morning is my friend Teresa. This past weekend, she lost her daughter to brain cancer.  When something weighs on me, it usually means I need to write. I looked at a blank page for over thirty minutes trying to figure out where to start. Then I realized, I can not find the words to portray the sadness and pain I feel for my friend. Really, what can you say when someone just literally lost of piece of their soul? Sure, you can tell them you are sorry, which I did. You could say, “She’s in a better place and is no longer hurting.” Or, “My thoughts and prayers are with you and your family through this difficult time.” These are all great and valid options to say in a situation such as this, and even though you mean well, I imagine these words bring little comfort for a parent who just lost their child.

As I think of my friend, I can’t phantom what she is going through. I could probably make up some metaphors at what I think she could be feeling, but I’m not. I just don’t think there are words to capture such a situation.

In the future I hope to write more about my friend and her daughter’s journey. But for now, I remain silent completely at a loss for words.

 

 

 

 

Down She Goes…..

What do yfallingou do when you find yourself slipping? Do you try to catch yourself? Do you blame the thing you slipped on? Do you reach out to grab something to stop the fall? Do you just expect the worse and hit the ground? No doubt about it, falling down is no fun and embarrassing. You could get hurt, you could hurt others? Did you know “slipping” is both a physical and spiritual thing? You can get tripped up and fall physically, but you can also get tripped up and fall spiritually.

As you know, the past year has been a crazy ride. And I am pretty sure the past year is taking a toll on me. I don’t like to admit defeat or show my weak side, but just keeping it real, I feel like I am slipping in both areas. I am physically and mentally drained most of the time. I haven’t opened my Bible in a couple of months. I have an negative attitude way too much. I find myself in dream land more than reality. This is a sucky, sucky place to be. But one thing I do know is I need to refocus myself and allow God to be in control again.

Just like when we physically fall, when I feel like I am slipping spiritually, I start to reach out and start grasping for anything to help the emptiness go away. Instead of hitting my knees and asking God for his hand, I turn away. And it seems the more I turn, the worse and more lost I feel. I have been here before, but it just seems like this time it is harder to find my way back. It is freaking me out.

So I am asking for a favor. If you are reading this and are a praying person, please pray for me. Pray for the fog to be lifted off me and I can find my way back to my killer-awesome self. I ask that you soften my heart for my family and to others. I want to bring God back as number one. Thank you.

Just Be……..

As December 15th approaches, my heart is filled with many emotions. That day marks a year since Mallorie was diagnosed with leukemia. This past year has been a whirlwind of change, sacrifice and growth. I can remember the feeling of losing my breath when we heard the words “your daughter has leukemia.”  The room was full of family, but I felt alone. I had no idea what laid before me in this unplanned season of life.

The hospital became our home on and off for many weeks. Just when I thought she was getting stronger, she would be sick. I wanted to be home with my husband and other two children, but I couldn’t. I didn’t know how to express myself. I was running on anxiety and fear. Cancer changed me. Some of the changes are good, but some are not. There are days I worry she will relapse or catch something she can not recover from. It always lingers in the back of my mind. Every~single~day. On the other hand, I am more compassionate to others with illness. I have made many new friends. And I try not to take anything for granted. There are still days, even though she is in remission and doing so well, I get angry and frustrated at this monster. I often wonder if I will ever be able to relax.

It seems hard to believe we have come so far. I can remember the first few nights in the hospital at diagnoses thinking, “Will this ever get better?” Many doctors and nurses would tell me it would, it just takes time. They were right. It does get a bit easier. Treatments are less harsh. Appointments become fewer. Hospital stays less frequent. However, the thought of cancer and all it has destroyed never vanish from my thoughts. Not only do I worry for my child, I worry for all the other families and children dealing with cancer. So many children have been taken away. Families are broken. Dreams are lost. It makes me want to scream.

 

Even with all the doubts, fears and frustrations, I know deep down we are blessed. And I know there is always a purpose for the things that happen. I have amazing support and prayer warriors all over the country. It is hard to be a care giver of a sick child, plus be a focused wife, mom, daughter, friend and employee. There are times I feel like a failure, but then moments I even surprise myself. I have learned it’s all about perspective. I have days when I am alone, I break down. And in those moments, I think I become a bit stronger. There are days I am happy. There are days I am mean and selfish. There are days I want to quit. There are days I want to dance. There are days I want to run. But at the end of those days, no matter what emotion I am feeling, I know my purpose in this moment in time is to “be”. Be flexible. Be willing to love. Be open. Be okay with what I am feeling. Be honest. Be understanding. Be silly. Be ready for anything. Be available. And most importantly, be still.

One of my favorite verses is “Be still and know that I am God.” I love that verse so much I have it tattooed on my wrist. It reminds me I don’t have to have the answers. And when I am a complete mess, I can rely on God to carry me. He has been the only reason I have made it through my daughter’s cancer and all the other junk associated with it. I truly do hate cancer. It is a thief. It is a destroyer. It is a selfish beast. But I believe good conquers all evil. And when I get to tuck my daughter in at night or I see her smiling and hear her laughter, she is winning this battle.

Life is to short to play games and carry baggage. I try to let go of all the crap that comes at me. I am learning to become comfortable with expressing myself.  I guess if I had to thank cancer for one thing, I would have to say thank you for showing me I am not prefect. I will stumble and fall. I will continue to make mistakes. I will cry and be angry. Cancer has reminded me to reach out to God. I don’t need to be a super hero. And I am discovering it is okay to just be, well, me.

I am a Christian. I am not a door mat.

There are some people in this world, who for some reason, feel inferior. Like the rules don’t apply to them. Somehow in their “jacked up” mind feel they can control and manipulate people and situations. Sadly, I know a few people like this. They are difficult to work with on any level. It is so frustrating, especially when you have tried to be accommodating and the better person.  Eventually you get to a point where enough is enough. You put on your boxing gloves and hit the ring. You are pumped and proud to have gained the strength to fight. Your opponent jumps in and the first blow delivered is – “I thought you were a Christian? Christians don’t act like that?” There goes the wind out of your sails. Now you start to doubt your intentions, you put your tail between your legs and run away. They won, right?

“Battles are won in moments that don’t feel like victories.” ~ Pastor Mark

How many times have you felt like you finally have the strength to take a stand and you are left feeling empty? I just had an experience like that. Not going in to much detail of the situation, but understand it is a very personal matter. I had a run in with someone who I must deal with often. No way around it. And recently things have been getting out of hand. I had enough. I called this person out. I am tired of letting things slide, especially when it comes to the well being of others. Of course we had some nice, colorful things to say to one another. Then I received this message “You sure are hateful for a ….. Christian?” Hold the phone! Are you serious? There are few things that really get me fired up. Don’t mess with my kids. Don’t be shady. People who don’t pull their weight, but expect credit really get under my skin. But the number one thing on my list is when someone comes at me questioning my love for Christ. It blows my mind when people do that, especially when they claim to be a Christian themselves. I feel people who throw out the “I thought you were a Christian?” card are cowards. No one has the right to confront you on what they think your relationship with God is. It is something between the two of you. And let me clarify, this post is not going to get into the nuts and bolts of Christianity, what’s right and what’s wrong. This post is simply this ~ Yes I am a Christian, but I am not a door mat.

Here’s the deal, God made all our emotions. Every-single-one. So thinking you need to be happy and pleasant all the time because you wear a cross around your neck is absurd. And I think sometimes, Christians, have been taught or  believe they should always have a halo around their head. Like they shouldn’t rock the boat or ruffle any feathers. You may find yourself thinking, “It must be a sign of weak faith if I get mad or have anxiety, because if my faith were stronger, I wouldn’t get upset or worry.” To me, that is a lie from the devil himself. It is not a sin to get upset. Life stinks and God knows that. Becoming fed up with ridiculous, unfair situations is okay. God still loves you. And you don’t have to agree with everything. Conflict is natural and it shows we were all made unique. You can be a Jesus follower and have an opinion. Of course, how you deal with these situations is key and a post for another time. Personally, I don’t always handle conflict with grace and mercy, but because of my faith in Jesus, he gives me grace and mercy even when I don’t show it to others.

“Those that talk down to you are just trying to walk tall by making you feel small.”

Understand this, just because you love Christ doesn’t mean you should allow people to walk all over you. Stand up for what you believe is right. Defend the weak and for those who have no voice. And yes, it could mean things are going to get ugly. So what?. Sometimes life has to get messy before it can get cleaned up. Don’t let anyone make you feel inadequate or small when they question your faith. The only one you have to answer to is God. If you feel in your heart you are doing what is best and your motives are pure, you continue to fight.  Now, I am not saying to go all “Braveheart” on people. Don’t go bashing in doors, kicking butt and taking names. What I am saying is it is time to realize, being a Christ follower doesn’t mean you have to remain silent and allow people to rub their dirty, muddy paws all over you. Remember the big fad back in the day, WWJD? Jesus was prefect. The only prefect person to live on earth, but you know what I think Jesus would do? He would show his emotions. In fact, he did. He got fed up with situations. He stood up and made himself heard.  He laughed, he cried, he sang with joy, he got tired, and he even got angry. Since Jesus had these emotions, why would we feel it is not okay for us to have them? It does not make us any less of a Christian to have certain feelings. Period.

 

 

We All Need A Little R&R

Take care of yourself. Make sure you get enough rest. Take time to focus on you. 

Those are statements I have heard a million times. It is hard, when you are a parent, wife, co-worker and friend, to take time for yourself. Just when you sit down to take a breath, someone needs something from you. I don’t think that is a bad thing, ya know, to be needed and wanted. But I will admit, from time to time, I get overwhelmed with my responsibilities adulthood brings. Trying to juggle home, work and social life can really bring a strain when you are trying to be all things to all people. And of course to add to the stresses of every day life, I am also managing and taking care of a child with cancer. (On a side note, I am not sure which is worse, dealing with a 15 yo teenager or my 11 yo cancer child. Stay tuned for a post about that. LOL.)

I can not think of a time in my life where I have been more stressed out. I remember thinking college finals were stressful. Then I started working in the advertising world  and that was stressful and demanding. Wait, having a husband and a baby was stressful, demanding and overwhelming.  So why not add two more of those. Kids, not husbands. But trying to manage home, work, kids, job and cancer is really putting a strain on me mentally, emotionally and physically.

I think I do a pretty good job of keeping it together, from work meetings, school functions, doctors appointments and house duties, but here lately I just have not been feeling like my normal self. I have become easily fatigued, grouchy, foggy and unmotivated. It seems like I have been this way for years, but reality is only a couple of months. Everything I tried to feel better wasn’t working. I could tell something was wrong health wise, but couldn’t put my finger on it. I started with allergy medicine, (living in the midwest it is allergy season 24/7) and that wasn’t getting rid of the symptoms of stuffy nose, headaches, dizziness, clogged ears, the normal allergy signs. I let it go for about two weeks and finally called the doctor. I got in and he said the same thing I already knew, allergies. So he gave me antibiotics and told me to take Claritin. Sweet, no problem. I knew I would be back to my ol’ self soon.

I finished the antibiotics and still was not getting better. I was so bummed. I was tired of feeling like crap. I kept thinking, I am too busy to be ill. I will just ignore this a keep on trucking. A week later I was in the ER for a UTI. A UTI  is really far away from my sinuses, so where in the world did that come from? So, I was given antibiotics for that and said I should be feeling better in no time. Great! I was excited to be feeling better in that area too. Still fighting the head cold from hell, I did get over the UTI and was feeling better. I still kept pushing myself, even though my husband kept telling me to rest. He kept saying something is wrong and I should go back to the doctor. I kept blowing him off because deep inside I knew there was something wrong, but I didn’t have time to deal with it. I am the amazing woman ~ no time for sick.

Anyway, about three weeks ago Mallorie had a spinal and chemo. I felt horrible, but I got out of bed early that morning and we went to the appointment. I could not breath out of my nose and I had no energy. I wanted to crawl in a hole and die. I actually curled up in the bean bag on the doctor’s floor and slept while Mallorie was getting treatment. By the time we got home, I was running a fever, had the chills and pretty sure I was going to die. Rob loaded me up and took me to the ER, again. Diagnoses, sinusitis. I got another round of antibiotics and a steroid. This time I know I will get better. Right?

I took my medicine just like I was directed. Starting feeling better. I could breath out of my nose, the pressure was pretty much gone and so was the dizziness. I am on the mend! I kept up my busy schedule. All the hustle every mom knows. I was still very tired and my body ached really bad. I was not sure why this was happening. My upper back was achy and my lower chest felt a bit tight. Breathing was becoming painful. I was told I now have pneumonia. What the heck? Are you serious? I have never in my life had sinusitis or pneumonia. And within two weeks, I have both. This is not ok.

I received my first breathing treatment yesterday. Worked really well. I was given MORE antibiotics and an inhaler. I now notice that breathing is rough at times and my body still gets very achy, like I don’t even want to walk. I get tired just walking down the stairs to the basement. I have started coughing a lot and it hurts. It is really no fun. I am just praying that this time the medicine works and I will start to be back to my normal self soon.

I feel guilty for being ill for so long. I feel like I have let my family and my job down at times. I take my role as wife, mom and co-worker very seriously. And I would feel horrible if I gave my illness to my husband and kids, especially Mallorie who has a jacked up immune system already. I now understand how important it is to truly take care of yourself first. I am no good to my family or work if I am not healthy. I have got to get it through my thick head that I must take time for myself and chill out every once in a while. The past couple months I have felt worthless and miserable.

One hand full of rest is better than two hands full of work and trying to catch the wind. Ecclesiastes 4:6. This verse reminds me that I don’t have to be everywhere all the time. I don’t have to try to be Wonder Woman trying to save the day, or conquer the laundry in single bound. If I don’t ~ oh well. As long as we have clean underwear, I should not feel guilty if the laundry sits one day while I rejuvenate not just my body, but my soul. I write this post with the hope that others, who are in a similar situation will realize they are not alone and we need to take time for ourselves. We should not feel like less of a person because of it.  And since I have chosen to not take care of myself like I should, (I know my husband will read this and silently think to himself ~ I told you so.) I am having a harder time getting to 100 percent. I should have just stopped and rested in the very beginning. It makes me think of what my high school gym teacher, Teach, used to say, “Do it right, do it light. Do it wrong, do it long.”  Please take time to rest your body, mind and soul. The world will not stop and your home will not collapse. It will make you better in all areas of your life.

Blessings.

The Calm Before The Storm

It is Sunday morning. Another day in the hospital. I really don’t know how to feel right now. The wind is forcefully whirling outside our room window. Mallorie sleeps.

I got to sleep at home last night. I slept well, but still feel exhausted. I was hoping when I got here this morning, Mallorie would be feeling better. She’s not. Actually, she’s worse. The infection she has is one of the worst side effects from chemo. She can’t eat and is in pain. The nurse and I were talking this morning about her state of health. During the conversation I realized that cancer is not just a disease of the body, but it is also a disease of the mind. 

Mallorie has to want to get better. I can’t make her better, her dad can’t make her better. She has to want it, but right now she has no control of anything going on in her life. She can’t control the pain, she wants to eat, but it is too painful. And every single day she stays in that bed she loses 10 percent of her strength. It breaks my heart because she was the most outgoing, always on the go child. 

Today we just rest. Even though she sleeps, I know she is thinking constantly how to beat this. It has to be on her time. I want her to fight now. I want her to suffer through the pain and eat. I want her to get up and walk. But I have no clue what she is going through. All I can do is be there and love her where she is, hold her when she cries and pray for her. Right now, this cancer may be in the lead, but it won’t be for long. When Mallorie makes the decision to fight, it will be with a vengeance. And as she rest, God is working in her. God has her wrapped up in His arms. I honestly think that this is the calm before the storm. Who knows what is going on between her and God while she sleeps. And when it is her time to fight, watch out because Mallorie ain’t no joke when she sets her mind to something. 

This morning as I rest I the bed next to Mallorie, there is peace. The nurses aren’t coming in, the halls are quite and besides the howling wind and the sounds of her machines there is silence. It has been a time of reflection and understanding. It is not our job to understand why things happen. But it is our job to live by faith and trust God. The bible states many times to cast your worries, fears, troubles and doubts to the Lord. Even though I still get upset, I still cry, I still get angry and I still at times have self-pity, I believe with every once of my soul, God is in control. It is funny, over the summer our family went on vacation to see relatives in South Carolina. While I was there I got my first tattoo with my cousin. So on my left wrist, inked in red, it reads, “Be Still’. It comes from the bible verse, Psalms 46:10, Be still and know that I am God. I wanted something to remind me to stop trying to be in control of everything. I never knew back in the summer that this tattoo would carry a more significant meaning by winter. I have said it many times and I will say it a thousand more, God makes everything beautiful in His own time. I stand by this statement and I look forward to that moment when God says, Mallorie, it is time. I have given you all you need. It is time to fight.