Mary’s Shoes

In her shoes:

These are Mary’s shoes. Adorable and pink and spunky like her. I remember the day we went shopping for them. She knew just what she wanted so we went to the mall and she picked them out. I sometimes wear them. They make me feel close to Mary. They are very comfortable. They are also about a half size too small, because they are her shoes and not mine. I keep them around and look at them often. I recently got to thinking that most people have no idea what it is like to have walked in her shoes. They can’t grasp the concept of a day or minute or even an hour in her shoes. I walked closely beside her while she wore these same shoes but even I can’t understand how it felt to actually walk in them. I realize most people couldn’t have survived very long in her shoes. And no child should have to walk the same path Mary traveled. Some children battling cancer walk a shorter, easier path and many walk an even more difficult path. A more difficult path is difficult for me to comprehend. I tried hard to remember what a day in her shoes looked like during cancer treatment and it went something like this:

6 a.m. You don’t really wake up because you never really went to sleep. 

7-8 a.m. Nurse changes and medicine given.  

8-9 a.m. Doctors visit and my parents try to make me eat something even though I am feeling nauseous. What I would like to eat isn’t on my “special diet”. I really wish everyone would quit poking at me. It’s annoying. 

9-10 a.m. I have to get up to go to the bathroom. It takes about 20 minutes so I hate going. I have what feels like 100 wires tangled around me. My body aches all over and I have neuropathy (nerve pain) in my feet. It feels like 100’s of needles poking me at one time. When I get up a huge pole with all kinds of buttons and monitors and tubes and medicines has to go with me. It’s awkward and cumbersome. It takes forever to unhook me from it. Sometimes it trips me up and pulls at my skin where the needles and bandages are secured. This HURTS! I need
 help from at least two people to sit and wipe my bottom. Embarrassing and frustrating-Ugh.🙄.

10-11 a.m. I try to text my friends and watch a little YouTube but I have to go physical therapy. I go in a wheel chair because I’m too weak to walk that far. 

11-12 I am made to eat again, food I don’t want and can’t really eat anyway. My teeth and mouth hurt.  I have mouth sores and everything just aches. 

12-1 p.m. I doze off just to be woken up for a  change of the bandages around my chest tube. It is tedious and painful and takes about 30 minutes. Sometimes it bleeds and gets infected. 

1-3 p.m. I am taken down for X-rays, MRIs and radiation. 

3-4 p.m. I am so tired but a counselor comes in and wants to talk about how I’m feeling. Really!?!?!I feel like sh*t.

4-5 p.m. The nurses make me walk laps around the BMT unit. They try to make it fun. They play music and make jokes and dance. They are silly and ridiculous, but I love them. They love me even when I am grumpy and 
mean to them. Really, I just want to be left alone and to have a little peace. 

6-7 p.m. Doctors return and talk about me, in front of me. I try to block all the information out. It’s too much to comprehend. My parents explain things to me later. I just want to get better and go home. 

7-8 p.m. Nurse change again and I don’t eat...again. The night nurses are not as friendly. I really just want a Starbucks and Zaxby’s chicken nuggets. Yummmmm.

8-9 p.m. Bath time means 100 tubes getting in the way, 3 people in my business and no privacy. I can’t get certain areas wet, that’s why I need help. I would love a real bath and to wash my hair. Oh yeah, I don’t have hair. Ha. 😆. Oh and really good smelling soap from Bath and Body Works would be a treat, not this nasty antibacterial hospital soap. Ewww. I’m 12 yrs old. I need some privacy. 

9-10 p.m. I wish I could sleep. I wish I could get comfortable. I wonder what my friends are doing. I wish I was a normal kid in school. What are my brother and sister up to? Do they miss me? Will my life ever go back to normal? How did I even get here? Will I ever get better? Does God hear me? I am so uncomfortable. This is not even a real bed. It’s tiny and scratchy and small. I am in so much pain. Maybe I can ask the nurse for some pain meds and try to sleep. Please God make me better. My mom looks so sad and she never sleeps either. I just want to go home. 

10 p.m.-6 a.m. Constant beeps and nurse visits. Constant pain and stress. Endless nightmare. 

This was just an example of one day of 100’s just like this Mary had to endure. Some were better than this and many were much worse. 

Please pray for those who are fighting this same battle and soon to face this battle. Pray for strength and perseverance. 

Thank God if your children have health and normalcy and problems that can be easily solved. Be thankful for illnesses that can be treated and easily cured. 

A day in my shoes looked like walking beside Mary, holding back tears, trying to disguise worry, begging God to save her multiple times a day, spending countless hours scouring the internet for information and new treatments for my child’s disease, encouraging her, trying to find time to eat, sleep, bathe, and to smile and laugh with her. Life was still worth living if you could find a real reason to smile. I tried hard to avoid mirrors because the person looking back at me was a stranger I no longer recognized. The person I now saw reminded me that I was also sick and sad and lost. I didn’t need to see that person because that person didn’t matter anymore, the only thing that mattered was saving my daughter. 

Mary would be 16 Feb 5th. I imagine she should/would be wearing different  shoes today. Shoes not made for comfort but for fun like-heels for a school dance, dance shoes for dancing at RISPA or tall boots for stylin’ in the high school halls and hanging with her friends. 

Mary,

There should be another word for missing you because I more than miss you. When I lost you a physical piece of my heart and soul was forever ripped away. My heart forever aches for you. I can’t wait until I get to see you again. I hope you are driving the car of your dreams in heaven. I imagine you are driving a pink convertible blasting your favorite tunes with your best friends in the passenger seats. In Heaven you don’t need seat belts or speed limits. How fun. 

I miss you. 

I. Love. You. Forever. 

New Year 2019

I know I am excited for a new year and for new beginnings. These past few years without Mary have been tough. Tough is not even the proper word. They have been brutal, exhausting, trying, frustrating, maddening, depressing and so much more. But I “try” really hard to not dwell on the past. I “try” to live in the moment and focus on moving forward into a more positive future. For a long time I was stuck in limbo and sometimes stuck in the past. Being stuck is the worst feeling. When I look back over the past few years it seems like an eternity. When times are bad it seems they drag on forever. When times are good I want to hold on tight to those times but they seem to fly by.  I am excited to see what 2019 brings. I am excited that I have the ability and the opportunity to make positive changes in my life. After some really dark days, one day I woke up and realized I had two choices: 1. Throw my life away and continue to fall apart 2. Fight to live and make the most of this life...I chose #2. That day everything changed for me. It’s been a daily struggle but it is what I needed. I decided to take charge of my own health and happiness. The truth is no one is going to care for me as much as I care for myself. It’s my job, not someone else’s. I can only control my actions and my behaviors so I decided to focus on me for once in my life. It was really hard to do. It felt selfish although taking care of yourself is not selfish. It is necessary. Honestly I realized that if I didn’t take care of myself I wasn’t sure I was going to be around many more years to take care of my children. That was my biggest motivation. My kids=my world. Stress can kill you, you know!?!?If you don’t know, well it can. And it will be a slow agonizing painful death. 

Recently I had a memory of some conversations Mary and I shared in the hospital. We use to spend  hours talking about being frustrated with how badly we wanted to get out and make change happen in the pediatric cancer world.  But we felt trapped and unable 
to do much while we were stuck in the hospital and while she was undergoing intense treatments. We killed time and stayed positive by designing T-shirt’s to raise $ and making Facebook posts sharing her story and awareness. We talked about and planned all the things we would do when she finally got out of the hospital and was healed at home. It kept her mind occupied and her motivated to get better. After she passed I was stuck in a type of limbo and unable to make myself do much. I now finally feel motivated to do what Mary and I always dreamed about and that was to find big ways to make big positive change. I know it’s possible. I feel the same about my everyday life. There was a time I felt alone and lost and stuck but I’m ready to find more peace and happiness this year. God has shown me in many ways that he didn’t ever abandon me.  Although at one time I was positive that He did. He has shown me mercy and love and hope. I can now see that sometimes you need to get knocked down to learn to surrender and trust Him. I am very thankful for this. I am a much different person than I was before Mary’s cancer. I like this person. It’s not
 a “new” me but the real me. The person I was always afraid to be. After living through cancer and losing a child not much scares me anymore. It doesn’t matter if anyone else accepts me or understands me. Those that really love me will always love and support me. You get one shot at this life and it is mine alone to live. As long as I am proud of who I am then that is all that really matters. I aim to be a good mom and make Mary and my other two children proud. If I accomplish this then I am a success. If I am a healthy and happy person then I AM the best mom I can be. I’ve had to do a lot of soul searching these past few years. I’ve had to learn who I was, find my purpose and create future goals. These are things I’d never really thought about before losing Mary. I always lived my life for others and for the approval of others. Life is short and mine is not over-so I plan to make the most of it. Bring on 2019!!!

Lessons learned in 2018

Take chances, it’s better than never knowing

Everyday is a blessing, make the most of it

Never apologize for who you are

You don’t have to accept being treated poorly, walk away

Fight for what you believe is right

There is bad in the world but there is also a lot of good

You are stronger than you believe

You will have bad/wasted days, get through them and move on

You will make mistakes, leave them in the past and look forward

Use your voice and speak loudly, make people hear you

Love yourself and be good to you

Don’t worry about how others perceive you as long as you feel good about yourself 

Everyone deserves to be treated with love and respect 

Actions speak louder than words

When in doubt always choose love and kindness 

Life is hard but it is also beautiful 

God will fight for you, even when you don’t feel Him there. Sometimes you need to just “Be Still”

*Most Important lesson... “Be Brave”

Thank you Mary

~Wishing all my friends and family the best year ever! 2019 🥂

Isaiah 40:29-31

“He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”