A Week of Yes and No’s

Padgett Magic Team

I can’t arrange the thoughts in my mind.

They’re all too loud. (Thanks, Jodie)

The past week has been a blur of too much and not enough.

We’ve had the 3K walk for the Brain Tumor Center at Duke last week. Followed by a week full of paperwork, rejections and a doctor’s appointment.

Then, we ended the week with a 5K that some of our dear friends ran in Chris’ honor.

Needless to say, the week was full of up’s and down’s.

The 3K walk at Duke was wonderful. A magical group of people that actually know the pain that I feel on a day to day basis. A gathering of souls that are beaten down by the word, “Brain Tumor”, but still manage to rise above the hurt and anger and fulfill their own or their loved one’s legacy. The main highlight being the group of survivors standing on a stage and beaming with pride out upon a crowd of people who wrapped their souls around their hearts and lifted them up. Probably higher than they ever imagined.

There was a lowlight, though.

A sobering reminder of my future.

A raw and unexpected feeling suddenly washed over me at one point.

The “In Memorium” shirts.

The team shirts with pictures on them. Printed with dates of birth and dates of death.

Smiling photos of people who fought the same fight my husband is fighting.

Smiling photos that reminded me of reality.

I was so happy to go to this event. So happy to take part in a walk with my family, with Chris by my side, holding my hand. So damn happy that, for a moment, I actually forgot the truth.

Chris’ brain cancer isn’t curable.

One day I will be wearing one of those shirts. One day my smile will be forced and my hand will be empty.

One day will come.

And that was the undeniable reality that I overlooked in my happiness. And I believe Chris felt that reality, too. His eyes were wide. His sentences shorter than normal. Obviously, clipped by fear. All I could do was rub his back as we walked and whisper, “I’m right here, love.” Only then would he smile. Only then did I see a glimpse of my fighter.

We left quickly. He was complaining of headache. And while I don’t believe he was lying, I do believe the headache was brought on by something more than four brain surgeries. I believe it was brought on by heartache. He’s only human and had a natural human reaction to what most would call a reality check.

So, we came home. Somber and restless. Needing to be busy and needing to rest.

My week was full of paperwork and tireless hours of research and phone calls. You see, I want to dot every I and cross every T. I can’t miss a thing. Be it a prior authorization for a new medication to phone calls to various and sundry doctors, doctor’s offices, government agencies, pharmacies, aphasia groups, home care nurses, speech pathologists, social workers and the occasional friend. Without constant diligence, my world will crumble beneath the weight of uncertainty. It’s all about keeping organized in a disorganized world.

And I do that. Stay as “on top” of everything as possible because the one phone call missed or the one email that doesn’t get sent could be the downfall of this teetering thing I call life.

I took Chris to the doctor on Friday and boy was he happy to get his stitches out! He wanted to cut his hair so bad he could barely stand it!

But, they didn’t take them out.

They weren’t ready to come out.

Another blow to his self esteem. Another no, when all he wants to hear is yes.

Damnit! Somebody tell this man yes! Give him control of at least one thing.

But, no.

No is all we have heard so far. And little by little, they are taking control of a man that once prided himself in his appearance and intellect. They’ve taken thirty five percent of his skull. He won’t say it, but I know he shudders when he looks at himself. I know he curses at the mirror. He gets frustrated when words don’t come. He knows they may never come. And he knows he’s lost control. Watching someone that fills your heart with overcapacitating love lose control is a hell I wish on no one. A hell I live every minute of every single day.

But, then there was Saturday.

How to explain the way Saturday made me feel? This is one of those times when words can’t possibly be enough. There’s no way I can explain how love and pride feel.

On Saturday, a group of our friends ran a 5K race in honor of Chris and his fight. There were tee shirts made and worn with his favorite catchphrase “Padgett Magic” on them. Team Padgett Magic was full of love and hope. I was filled with a sense of gratefulness that is undefinable. Watching each and every one of them cross the finish line, knowing that it was their love of Chris that propelled them to it, was beautiful.

You know what was more beautiful?

Chris’ face when he saw each person. I live for that face. His smile was big. His eyes sparkled and I’m sure I saw his chin quiver when he hugged one of them. He was happy, y’all. And it was the love of others that made him happy. I am thankful. I am grateful. And, for once, I was speechless. How do you say thank you to someone who spent their precious time getting special tee shirts made? How do you say thank you to the people that bought them and wore them with pride? You can’t. But, I hugged each and every one of them after they finished and exclaimed, “Thank you, thank you, thank you!”

They will never know how they touched my heart. They will never know the depth of my gratitude. I can only hope they know that my hug was genuine. And despite everything, they made me forget, if for only a moment, the reality of my life.

So, now we look forward to another week. Another week of diligent work and mindful living. Another week of our fight.

And that’s all I can ask for.

Another week.

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10 thoughts on “A Week of Yes and No’s

  1. Jenny Lloyd says:

    What a beautifully written piece that tells of true love. For better or worse. It is hell to wTch someone you love struggle and knowing there is nothing you can do other than love, support and pray! I know that feeling as I have a son wi h cystic fibrosis and I watch him struggle to breathe each day. God is my strengt and I pray he is yours. I know Chris from being a teacher at Youngsville school. My prayers are with you

    Liked by 1 person

  2. You have been on my heart so much. You are an amazing writer and you share your experiences with such vivid details that I feel like I am right there with you. I am so sorry that you are going through this really tough journey. You are handling this all so well and Chris is so blessed to have a wife who cares and loves him so much. I will continue to pray for you for strength and perseverence for the journey. I pray that you will find joyful moments in the midst of your trials. May you know that God is with you on this journey. You are not alone. Blessings.

    Liked by 1 person

    • Thank you for your prayers and thank you for reading my posts. The Lord is working in my life. I am currently looking for jobs. If you could add that to your prayer list I would appreciate it so much. I have to go back to work. Chris and I have a GoFund Me site that I shared in one of my posts, but it is running out. It has paid our bills for a while, but even though Chris is still on IV antibiotics every eight hours, I have to go out and make a living somehow. The link to it is in my post Brain Tumor: My heart is full. If you’d share it, I’d be very grateful to you. Someone, somewhere may be touched by our family’s struggle and may find it in their heart to donate. Every penny goes to helping us live day to day. So, please share Joyfull Mom. And please pray that people will find it in their hearts to donate, as we have 21 dollars to our names. And pray that I can find the right job soon. I adore you for commenting and I thank you for your compliments. I’ve never been a writer, but even the smallest words of confidence help me to grow.

      Like

  3. My heart and prayers are with you on this journey. “Lord, you are our Provider, Healer, our ever present help in time of need. Lord I pray for this beautiful family that you will provide for them financially, physically, and emotionally. Open the doors for the perfect job for this family. Carry them through this journey. May they see your faithfulness and love even through the struggles. May Your name be praised! In Jesus Name, Amen.” I will continue to pray for you and your family. I will send out a post with a link to your site and I will be praying specifically over that post. You pray too, ok? God is in control even when our life is out of control. Be blessed and encouraged my friend. Tisha

    Liked by 1 person

    • Hi, Tisha!! I hadn’t heard from you in a while and that may be because I haven’t written in a while. My heart hasn’t been in the right place, so to say. I know you said in our last exchange that you’d write a post about my family and add our link. If you haven’t done that yet, I encourage you to read a new one that was just set up. Our old one expired. I think you’ll enjoy this one even more. It made me think of you when my friend set it up!

      Hey, I’m supporting this fundraiser, please have a look – ‘Working together for Christ. ‘ https://dm2.gofund.me/26z6yy4

      Let me know what you think and if you’d still be willing to share. God has been working in my life and my underlying feelings are still of happiness and hope. Despite the money I hope will come. And I hope this post helps!!
      Allison
      I pray today for this post and for you, Tisha. An unexpected friend in a daunting world. Amen

      Liked by 1 person

      • Hi Allison! It is so good to hear from you. I have not forgotten you, my friend. As a matter of fact, I was just praying for you the other day. I am sorry I have been out of touch. My husband was out of town for a week, then we rolled into another full week, weekend, and then a survival mode week this week. I have been neglecting my blog so to speak 😦 but not holding back on prayers! I still plan to send out a post on your behalf. I will check out your fundraiser link. I am happy to see a friend of yours helping you raise money through Christ. I want to encourage you through this journey. I know it is hard to see Jesus in all of this, but He is there with you. Don’t give up on Him. Instead, reach out to Him and let Him carry you. I can’t imagine what you are feeling. Even in the little trials I face, it gets hard to see God through it.But when I remember to reach out to Him, I am filled with strength and peace. Be blessed and encouraged. I will be covering you in prayer. Blessings to you my friend. Tisha

        Liked by 1 person

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