Thursday, December 8, 2016

No One Fights Alone

It's often said in the childhood cancer world, "No one fights alone.". It's not a solo journey. Lately, I've been reminded of that more and more.

Yesterday, I reached out to friends and family to call their Senators to ask for support of the Childhood Cancer STAR Act. As I watched my Facebook post be shared and copied multiple times over the past 24 hours and read numerous comments and posts from people who made calls, I was humbled. This is an issue that directly affects my family, my child, and our future. But for many who made calls today, they don't have a direct impact on their lives. People called and shared to help ME, to help MY child, and to help MY family. This issue doesn't affect their lives or their families but they have joined our journey and because they are alongside us, they feel affected. When I saw my friends who have healthy families and friends without children who stood with us and made calls today, it brought me to tears. That's what they mean when they say, "No one fights alone.".

We have recently partnered with Alex's Lemonade Stand Foundation and have set up a Hero Fund in Tillery's honor. When we were in Cincinnati, ALSF helped cover some travel expenses for us before we were set up at the Ronald McDonald House. When we looked into them more, we learned they raise a lot of money for research and the TIL Fund is set up with all funds raised being used directly to fund pediatric brain tumor research. It's come pretty naturally to us to discuss ALSF and our hopes for funding important research. A few humbling things have happened over the past week. In addition to our usual supporters (thanks Hendleys and Burkes!) we had two donations this week that really touched my heart. The first came last week from my students, who took up a collection to present to me on the last day of class. (Don't listen to all the negative things you hear about this upcoming generation, these college kids have big hearts!) The second was from our favorite 12 year old, Natalie Vaughn. Natalie is a special girl and a great role model to hang around with our kids. On Sunday, Natalie gave me a handful of bills and asked me to put it towards our Christmas Giving fundraising. We have been doing fundraising efforts for over a year and we have so many people who have been involved. There are people who give every time we ask for donations and people who feel led at certain times or events to make a donation. Regardless of when, why, or how much, since our first fundraiser in August 2015, we have raised almost $14,000 for childhood cancer research! That's what they mean when they say, "No one fights alone."

Tonight, I went to dinner with two friends. I met these ladies when we were each going through some of our hardest days. We met at Cincinnati Children's Hospital. We were all miles from home with sick children and unknown futures. Before going in to meet my friends for dinner, I was texting with a friend who is spending the night tonight at Cincinnati Children's with her child. Earlier today, I spoke with two other mamas I met while living at the Ronald McDonald House. We became a community. Through the hurt that we were going through, we formed unbreakable bonds of friendship. We hugged each other on hard days. We shared meals, Cherry Cokes, and medical supplies. We laughed and cried and told stories that no one else we have ever met could relate to. That's what they mean when they say, "No one fights alone."

If I haven't said it lately, Thank You! Thank you for fighting alongside us. Our lives were forever changed when Tillery was diagnosed. The change was that we learned that we were not alone.

To make a donation to the TIL Fund's Christmas Giving, click here.

Sunday, November 13, 2016

I Just Want a Coke!

My dear friend, Christina was diagnosed with lupus nephritis a little over 8 months ago. Her symptoms came on quickly and her body was experiencing kidney failure when she was diagnosed. Immediately, she began chemotherapy and started taking a huge regimen of daily medications to keep her symptoms at bay and to allow her kidneys to heal. This all meant that she was immune compromised and the life she was used to living had to be altered. The plans she had upcoming had to be cancelled. Her daily routine became daunting as fatigue set in. Overall, life changed.

Last week, Christina challenged me to take the Cut it Out 14 day challenge to end lupus. I agreed to give something up for 14 days in support of my friend and will make a donation at the end of the 2 week challenge. Without thinking, I followed the others I saw joining and said I would give up Cokes.


Here is what you need to know about me. Every afternoon, I drink a Coke. I've done this for as long as I can remember. When I was working, it was a little pick me up to get me through the rest of the day. When my kids were babies, I planned my Coke time during naps so I could truly enjoy it. When Tillery was in the hospital, there was no "afternoon Coke". I would drink one in the morning, another in the afternoon, and even have another once she went to bed during my unwinding time (don't judge unless you've lived it!).

I began my challenge last Thursday. I'm literally 4 days in and it's messing up everything!

Thursday's I teach and I normally get a Coke on my way onto campus and sip on it through my 2 classes. Those little bubbles keep me going through back to back lectures on the same material. Sometimes, I skip my pre-class Coke and instead, opt to get one on my way home. A celebratory beverage after surviving 3 hours of college students.

Thursday was different. Instead of my peppy Coke during class, I had water. It was fine but not nearly as fun and the ride home without my extra caffeine boost was no fun either.

Friday, I again missed my pick-me-up and noticed I was getting pretty run down and irritable in the afternoon. I was feeling tired but my usual caffeine boost was no longer an option.

Saturday was a long day with a big church event that took all morning and kept me busy. I came home and the kids went down for naps and I wanted to do my usual routine. I even thought of cheating and having a Coke to reward myself for the busy morning.

It was as soon as I had that thought that I immediately flashed to Christina and how much she must wish she could cheat. She has missed time with her daughter and travelling with her husband because of the fatigue. She has missed participating in group meetings and outings because of germs, and when she was able to participate, she had to wear a silly mask that immediately made her stand out in the crowd. She's had to change so many things in her life and give up so many of the things that bring her little bits of joy. The same kind of joy that my afternoon Coke brings me.

I got sad. I started thinking of all that was running through my head about my Coke and how it all could relate to my friend's struggle.

"Why can't I just have one?"
"It's not fair that I can't but anyone else around me can."
"Would it really hurt to just do it once?"
"I miss my routine."
"I miss my energy boost."
"I'm sad."

I am sad! I hate what Christina misses and how her life has had to change. It brings tears to my eyes to think of this sweet friend, who always does for others, having to make sacrifices in her life. To think of how it must hurt and how that hurt probably comes and goes so she never really feels like she's over it.

For the next 10 days, I will miss my Coke. When Thanksgiving Day arrives, I will leap out of bed and rush to get my favorite bubbly beverage that I miss so much. I will give thanks for Coke! I will also give thanks for my friend, Christina, who is currently in remission. She's done with chemo and done with masks. She's celebrating her life and I'm happy to be a part of it.

Cheers to you, Christina! (Water cheers while I wait for my Coke!)

**To donate to the Cut it Out Challege, Click Here.

Wednesday, November 2, 2016

Hope in Milestones

A little over 2 years ago, we travelled to visit a friend in North Carolina. On our visit, he introduced us to his new girlfriend. We really liked her and she seemed to be a good match for our friend. Over the days that we spent with her, something was revealed...she had cancer as a child.

This was the first time I can remember meeting someone who had cancer as a child. I remember thinking it seemed odd. After all, you don't hear a lot about kids having cancer and I just imagined them bald and sickly in a hospital bed. I couldn't picture what they might look like if they survived and grew up. Did they survive? Did they ever recover?

I didn't think too much on it and I didn't really ask her much about it. We enjoyed our visit and then came home with hopes that we would see this girl again, as she seemed like a good partner for our friend.

I thought of her again a few months later, on the day that my daughter was diagnosed with cancer. As my mind immediately conjured up those images of bald, sickly children in hospital beds, I remembered our friend's girlfriend. She was an adult, lived on her own, had a job, and appeared very normal. She made it! I started trying to think of her every day. As we sat in the surgery waiting room, I thought of her. As we started chemotherapy, I thought of her. As my child had scars, bald patches, and started to look sick, I thought of her.

I didn't know her well. I only spent a few days with her and I couldn't really remember what we had talked about. Just normal stuff. She was just a normal person. In the scary days at the hospital, I clung to those very normal, almost non-memories I had with this woman. She was the face of survival for me and she was what I hoped my child could grow up to be.

Tomorrow, Joe and I travel again to see these friends. This time, we are going for their wedding. When Joe got the call from our friend to let us know they were getting married, I cried tears of joy for our friend. We love him dearly and I was so happy that he had found his match in life.

Then, I cried a different kind of tears. I thought of all this girl had gone through in her childhood. I thought of how much was stolen from her in life because of her diagnosis. I thought of the things she probably missed out on and the things she never thought she would get to do. I thought about the milestones in life we all experience and was so overcome by thinking of this girl who survived so much to be able to get to this moment to walk down the aisle.

Saturday, I will be joyful, like many, over the union of these two who are so right for each other. But Saturday, I will also be filled with another emotion...hope. Hope for a future filled with milestones and normalcy.

Congrats Chris and Sara! May you experience all of life's milestones together!

Monday, August 22, 2016

Back to School

I started my first teaching job at Walters State Community College the same week I found out I was pregnant with Tillery. For 2 semesters, Tillery attended every class I taught right along with me. At the end of the year, my students left for fun filled summer adventures and I went home and put my feet up and await the arrival of our sweet Tillery.

This week I'm going back to teaching, but this time it will just be me. After having Tillery with me for every class I've ever taught and then spending the last 23 months dedicated to taking care of her, I'm going out on my own.

For these past few years, I've often thought of what it would be like to go back to working. On some days, I've longed for this day while other days I've feared it. While going back to work gives me some independence and also means that Tillery is doing really well medically, there is still fear. The biggest fear is an emergency arising and me not being able to get to her. It's been so amazing to be able to always be with her and I thank so many faithful supporters who have financially contributed to our family over the past few years so that I could always be with her.

But it's time to step out of the fear. She's been really healthy for about 10 months, she's been eating by mouth for about 8 months, and she's been walking for almost 5 months. She's no longer the sick little girl that kept us on pins and needles. She's now a sassy little chatterbox who is super independent.

As I go back to the classroom tomorrow, I do so as a very different person than I was 4 years ago. I believe my time with Tillery has made me a better person in many aspects of my life as she has made me much more empathetic. I'm excited to begin down this road again and see how our story continues to unfold.

On a related note, I've often spoken about my Ronald McDonald House friends. We lived under the same roof while we were all experiencing some of the hardest days of our lives. We were each other's support and family so that we never went through any of it alone. I want to give a shout out to my old housemates who are also out in the working world again, doing an amazing job of keeping on in this world, even after hardship.

So way to go Leslie, Mary Ann, Sandy, Cassie, and Julia! And an extra high five to RMH dad, Brandon, who left the RMH and went back to school to become a nurse! I thought we'd never see the "real world" again!

Tuesday, July 12, 2016

Circle Me, Lord

Circle me, Lord.
Keep protection near and danger afar.
Circle me, Lord
Keep hope within. Keep doubt without.
Circle me, Lord.
Keep light near and darkness afar.
Circle me, Lord.
Keep peace within. Keep evil out.

Prayer by David Adam.

For the past few weeks, our church services have started with the reading of this prayer. I have not yet been able to say all of the words before tears begin to well up in my eyes and my voice catches.

Three weeks ago, we came to Norwood United Methodist Church to attend for the first time the church that our family would be serving in ministry. My husband would begin preaching the following Sunday so our first Sunday we planned to just worship from the back pew and observe. This was the first impression I had and I knew that God was speaking to me during this opening prayer.

We moved three weeks prior to my daughter's surgery and packing and unpacking boxes was a nice way to take my mind off of the looming date. Whenever I let my mind wander, the fear is always there. The fear I experience isn't about the surgery itself. Instead, I'm taken back to the paralyzing fear from November 15, 2014, the fall that caused it all. The time I laid my daughter down and turned my back just long enough for our lives to be changed dramatically.

I hate to always talk about that day. I really hate to relive it daily. But the truth is, I see that moment in my mind almost every single day. I see her hit her head on the wood floor. I see her face, red and crying, as I picked her up. I see her eyes flutter as Joe and I shouted her name and shook her. I see Joe run out the door with her, heading for the hospital. It's with me, always.

Friday's surgery should resolve all issues that remain from the fall. From brain bleed and bone flap removal to bone replacement followed by the bone recessing, my child's skull has not been round and there has been a visible reminder to me daily of the accident that almost took her away.

Following the night of the fall, I struggled with my faith in a way that I never have since accepting Christ as my Savior. My child had been spared, but I felt so undeserving. I doubted myself and questioned my ability to keep her safe. I was living in fear and while I was so thankful to have her, for the first time, I began to feel like that would not always be the case. After being so positive for so long, I had hit the bottom and did not know how to come back up.

One night was especially awful. I wrote this blog about the nightmares I experienced nightly. After my writing and the prayers of so many faithful prayer warriors, things began to improve. I let go of the fear that was controlling me and began to trust God again to lead my path.

As we prepare for this surgery that will finally leave my daughter with a round head and remove the physical reminder of that dark time, I have felt some of the fear coming back. It's as though I'm being reminded that our time is not promised. Like my nightmares many months ago, Satan is creeping into my life and telling me to be fearful.

This week, when I feel the pull to fear I've been instead saying "Circle me, Lord". What a beautiful mantra to carry with me this week! I encourage you to read it again and join me in asking the Lord to circle us all. He is our protection, our hope, our light, and our peace. May we feel Him circle our lives.

Circle me, Lord.
Keep protection near and danger afar.
Circle me, Lord
Keep hope within. Keep doubt without.
Circle me, Lord.
Keep light near and darkness afar.
Circle me, Lord.
Keep peace within. Keep evil out.

Thursday, July 7, 2016

What Kind of World

In recent months, we've been fed a lot of fears. Here is a short list of things we have been told to fear: bathrooms, gorillas, nightclubs, Muslims, transgender people, guns, alligators, foreigners, police officers, radicals, conservatives, liberals, Mother Nature, and everyone running for president.

Over the past few months, so many friends have made social media posts that make mention of the "kind of world" they are living in or their children are growing up in. I understand the fears because so much we see is scary. There are so many people or things that would or could hurt us. I also know that we are not meant to live our lives in fear.

I know I am a white woman. I know I am a straight woman. I don't go to nightclubs or Disney, either. So in many ways, I'm on the outside. I don't know what it is like to be judged by my skin color or my spouse. I have a master's degree and while I'm not rich, I've never experienced true poverty. I can sympathize but never empathize on many accounts of struggles.

What I can offer is love. It may sound silly and like that's not enough. "Oh, love, like that's gonna save us!" Maybe it won't keep me from harm or you from harm. But, we are called to love our neighbors. It's the biggest Bible takeaway after "love the Lord your God." (Matthew 22:37)

I've been doing a Bible study on 1 John and there is a verse I read recently that sums it up. There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love. 1 John 4:18

No fear in love. If we focus on God's love towards us, what have we to fear? I don't want to die but if I did, I know I will be with Jesus and free from the worries of this world. And if we show love to others, we show them God and give them the power over fear.

I know this seems very simplified and doesn't sound like it will solve anything. But honestly, is your Facebook post of fear solving anything? Do you think rules, government, signage, language, or elections will solve it? We can't wait on some major shift to happen without making minor changes ourselves. How about starting with love?

Instead of asking "What kind of world are we living in?" we could exclaim "What kind world we are living in!"

Tuesday, July 5, 2016

God Helps Us Handle What We Are Given

People often try to offer comforting and encouraging words to me as I care for my daughter with childhood cancer. One of the things that people say is "God only gives us what we can handle."

I want to discuss this phrase.

To start, let's look at the first part, "God gives us". This tells me that God has given me this situation. So when you say this to me, you are saying that God has placed that tumor in my child's head. God gave me a sick child. God is the reason that my child has cancer.

If I were not a believer in God, I'm not sure that would make me very interested in learning more about Him.

Then, let's look at the second part, "what we can handle". I assure you, I cannot handle this. This mass in my daughter's head wasn't placed there because God knew that I could handle it. I'm not any more equipped to handle it than you or anyone else.

Again, if I were not a believer, I would think that God obviously does not know me very well if He thinks this is something that I can handle.

Now, let's look at what the Scriptures say about  troubles.

The Lord is a refuge for the oppressed,
a stronghold in times of trouble.  Psalm 9:9

Though I walk in the midst of trouble,
you preserve my life;
you stretch out your hand against the anger of my foes,
with your right hand you save me.   Psalm 138:7    

In this world, you will have trouble. But take heart! I have overcome the world.  John 16:33

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.  2 Corinthians 1:3-4

These verses tell us that we will face troubles. Hard times will come. Not that He will send them, but that they are there. The verses also say that God is our stronghold, He saves us, He has overcome the world, and He will comfort us. It isn't about what we can handle but what He can handle alongside us.

Perhaps, instead of "God only gives us what we can handle." what should be said is, "God helps us handle what we are given."  

Tuesday, May 17, 2016

Hush Little Baby

Tonight, I did my normal nighttime routine. Put the kids to bed and flopped on the couch to scroll through my Facebook feed.

The first post was from a friend, another brain tumor patient's mom. It wasn't just any Facebook post, it was THE post. The post I've seen too many times in my news feed. The post that says hospice has been called in. And just like every other friend who has lost or is losing a child, she requests "hold your babies a little longer and tighter each night".

Immediately as I finished reading the post, my daughter began to cry. I went back to her room and asked "what's wrong?". Her response, like every night when she cries out, "I want you hold me". Most nights, I tell her that I can't hold her but I will sit in her room for a few minutes or I will sing her a song. Tonight was different. Tonight, I snatched her up and hugged her close.

We got in the rocking chair and as tears flooded my face, I tried to sing to her. The song I sang is the same one I sang every night when she was a baby - Hush Little Baby. When my son was first born, I started singing it to him and realized halfway through I didn't know the full song so after "if that looking glass gets broke", I added "mama's gonna buy you a Cherry Coke" and then made up ridiculous lyrics to end the song.

While I sang tonight, I thought of the lyrics - both the real ones and those I made up. It's all about a mama who will stop at nothing to make her child happy. It begins "Hush little baby, don't say a word, mama's gonna buy you a mocking bird..." and continues to offer more and more gifts if the previous doesn't work. As I was singing, I thought about my friend and her daughter. For the past few years, all she's been doing is jumping through hoops to try to save her. Trying different medicines, radiation, chemotherapy. Everything she could to help her baby.

When I finished the song, Tillery looked up at me and asked, "Why you crying?". I said, "Because I love you so much." She just looked back at me and said, "Oh, I love you so much."

I held her longer and hugged her tighter, just as my friend requested and then sang one last song - Turn Your Eyes Upon Jesus. It's the song we sing every night at bedtime and her little voice chimes in with me:

"Turn your eyes upon Jesus
Look full in His wonderful face
And the things of Earth
Will grow strangely dim
In the light of His glory and His grace."

Tonight, I am sad for my friend but I am so thankful for a loving God who has promised us an eternal life with Him. If we turn our eyes to Him, the things of this world will be dimmed and all we will see is His glory and His grace.

Hug your kids and teach them to turn their eyes to the One who can give them everything they need. The mocking bird. The diamond ring. The looking glass. Even the Cherry Coke.

For those who MUST know, here are my lyrics to Hush Little Baby. Enjoy!

Hush little baby, don't say a word, mama's gonna buy you a mocking bird.
If that mocking bird don't sing, mama's gonna buy you a diamond ring.
If that diamond ring turns brass, mama's gonna buy you a looking glass.
If that looking glass gets broke, mama's gonna buy you a Cherry Coke.
If that Cherry Coke goes flat, mama's gonna buy you a ball and bat.
If that ball and bat aren't good, mama's gonna buy one made of wood.
If that wood gets eaten by mites, mama's gonna buy you an airline flight.
If that airline flight gets booked, mama's gonna buy you some food that's cooked.
If that food is not very tasty, mama's gonna take it away very hasty.
And once that food is taken away, Til and Mommy will go and play.

Friday, May 6, 2016

Confessions of Super Mom

Once my child was diagnosed, everyone started commenting on how strong I am and what an amazing mother I am. Some days those compliments are encouraging but many others, they just feel like a lie.

I have often said that whatever your hardest mom thing is, it's still valid and it's still really hard. My hardest days might look harder to you but in reality, we all experience things on a relative scale to what we already know.

Before my daughter was diagnosed with a brain tumor, she had only had well child visits at the doctor. However, my son had pneumonia twice when he was about a year and a half old and both times resulted in ER trips. Those ER visits were a terrifying blur for me. Remembering holding him while they tried to start an IV, my heart still aches. It was the absolute hardest thing I had ever experienced. Ever.

Now, with my daughter, when we have to go to the ER, I take a shower before, pack a snack, and come in like I own the place. I walk to the desk and tell them that we need to go straight back to a room because she has a compromised immune system. When the nurse comes in, I give her the specifics on her port, the best supplies to use, and how to hold it and her to get it on the first stick. I ask for toys, drinks, snacks, whatever I want, as though I'm some A list celeb that can make crazy demands. I don't fear the hospital anymore because it's become a comfortable place.

I have taken my daughter to the operating room 12 times. I have slept on the blue vinyl pullout couch/bed more nights than I care to remember. I have held my daughter while someone put stitches in and when someone took them out. I have had to give her medicine and give her injections. I have been trained on how to maintain a PICC line, a port, and a feeding tube. I have been covered in vomit, blood, urine, poop, stomach contents, and cerebral spinal fluid.

But, it's all relative.

To those who think I'm super mom, to those who think I'm doing something you could never do, let me give you my list of limitations.

I cannot volunteer in my kid's class. There are too many kids, they are very loud, someone has a runny nose, and quite frankly, I'm scared.

I cannot do Pinterest. Any of it. Baking, crafting, decorating, none of it. When someone shares a Pinterest idea with me, I just shut down.

I cannot juggle multiple kids' schedules. Last summer my son took swim lessons 2 days a week and my husband had to take him because I could not remember that on top of my daughter's busy schedule. I don't know what I will do if they both decide to become active!

I cannot plan a birthday party. My son turns 5 Monday and his party is tomorrow. I verbally invited a few people this week and today I gathered some generic party stuff. Know what the theme is? Birthday party.

I cannot clean my house. I'm a stay at home mom who's house looks like a bachelor lives here.. I wish it wasn't so messy. I just don't know how to do it. Seriously, to clean, I just move the mess from one room to the other, or sometimes, from one counter to another.

I cannot make plans. I would love to have people over (the kind of people who overlook my messy house) but I just never invite them. I would love to have a girl's night out but I never think to plan one. I would love to do play dates, I just need someone else to plan it.

We all have the things that we just don't think we could ever do. Often, we just hang up on those things and we forget all the awesome things we can do. Come on ladies, we birthed these people! (Or adopted them, in which case you jumped through some crazy hoops and just getting fat for 9 months probably looks easy!) You keep them alive, daily! Some days, you don't think you will survive, and then you do. You survive so that you can do another unsurvivable day the very next day!

So, to the mom who has medically fragile kids, I salute you, Super Mom!
To the mom who is the Room Mom, I salute you, Super Mom!
To the mom who has more kids than hands, I salute you, Super Mom!
To the mom who has lost a child, I salute you, Super Mom!
To the mom who is still in pajamas, I salute you, Super Mom!
To the mom who reads "Hot dog, Hot dog, Hot diggity dog" and sings it, I salute you, Super Mom!
And, to all the moms who are surviving this thing called motherhood, I salute you, Super Moms!

Thursday, April 28, 2016

Making Our Normal Normal

We've tended to keep our physical therapy at home. The leg braces and gait trainer that assist my daughter in standing and walking are usually replaced with cute pink princess shoes for "going out". Recently, as she's started doing more standing and walking, the equipment has left our home and started traveling with her.

This week, something amazing happened.

I made a decision to take her "as she is" to pick up my son from his school. We arrived early to allow time for her to make her way from the parking lot to the classroom. She had her braces on her legs and her bright yellow gait trainer for support. She would take a few steps and then stop to talk about the wind in her hair or the birds she could hear in the trees. Slowly, slowly, she got all the way to the main doors. There were a few others approaching the doors with us and they all smiled and patiently waited while Tillery worked her way through the opening and into the hallway.

As she proceeded down the hall, parents and children encouraged her and cheered her on as she headed for her brother's classroom. It warmed my heart to hear the support and see people genuinely happy to see her getting around. My fears had been that people would gawk at her and kids would make fun but instead, all I saw was love.

Leaving the school, another mother told me that her daughter used to have a gait trainer. She said her daughter had hydrocephalus and a VP shunt (just like Tillery!) and that it took her a long time to get the hang of walking. She encouraged me by sharing that now her daughter is 5 years old and is well adjusted and you wouldn't know the obstacles she has overcome. I really appreciated her sharing her daughter's story and was thinking of how encouraging everyone had been as we made our way out of the school.

Tillery walked all the way to the car and I got the kids buckled into their seats and the gait trainer put back in the back. As I looked back at the school, I saw the mother who told me about her daughter coming out with her child. I was amazed to see her daughter was a child I had recently spent time with on a field trip. She was right, I never would have known the struggles she faced earlier in life. I smiled as I thought of my own daughter and the obstacles she has overcome that people around her would never know.

The day I took my daughter out with her braces and gait trainer, I embraced the life we are living. I accepted that this is what it takes to build strength and make advancements. In a world where we sometimes feel different, I made our normal normal.

Saturday, April 23, 2016

4 Things in 4 Years til 40 Years

Today marks 4 years until 40 years for me. Forty seems to be such a milestone and often people make goals or a bucket list of things to accomplish. I decided to go simple:

4 Things in 4 Years til 40 Years

1. Make The TIL Foundation a reality. A busy life with two kids makes getting the momentum behind this foundation much harder than I thought. In the Fall, Luke starts Kindergarten and we hope to start Tillery into some sort of day program that will allow me some uninterrupted time to focus on making this launch really happen.

2. Raise $100,000 for pediatric brain tumor research. This seems lofty but I figure if I set an easily attainable goal, I'll allow myself to underperform. Reality is, I've always been an overachiever so if I set a high goal, I'll work as hard as I can to get there. (Note, this goal can only be accomplished with the assistance of my super awesome family and the support of everyone reading this and everyone you know. I'll be calling on YOU for your time, your money, your resources, whatever. Get ready!)

3. Write a book. I've said many times over the years that I may write a book one day and now seems like a good time. For friends who have been with me through the years, you know I have plenty of material to pull from so perhaps a series is in order!

4. See our family be on the healthy side of this diagnosis. Having a sick kid is hard. Having a sick kid who looks healthy can be even harder. The day to day challenges aren't always visible to outsiders and even sometimes we forget how different our situation is from the norm. We have made it through some really hard times and some kinda hard times and now I'm ready to coast. We know there are a few more surgeries and chemotherapy in the near future but by this time next year, we may be through all of that. We have a very good chance of spending less time in medical offices and more time on playgrounds, ball fields, school hallways, etc.

I feel every single bit of my age. I have earned these years. I'm ready to make the next ones really meaningful. Who knows where this may lead? I'm ready to jump out there and try some things.

Thank you to my awesome and supportive husband who believes in me. Thank you to two crazy kids who inspire me to make this world better. Thank you to all of you who encourage me and our family as we go through life.

(If you are interested in getting the ball rolling on #2, you may make a donation to The Cure Starts Now online here or you may send a check to The TIL Foundation; 9508 Dayton Pike; Soddy Daisy, TN 37379.)

Wednesday, April 13, 2016

Sometimes You Gotta Feel It

You know the feeling when you went through your first breakup and you felt like everything in your life was falling apart? You were sad and hurt and you couldn't imagine ever moving past those emotions, but people kept telling you that things would get better.

Remember being pregnant and feeling like you were as big as a house and how uncomfortable you were? Unsolicited people everywhere would come up and say, "You're going to miss this special time."

And when your kids were babies and you were up and down all night long and all you wanted was sleep and people would tell you "they're only little once"?

Remember the thoughts in your mind about those people? Even if what they said was their way of trying to be helpful, sometimes it just wasn't. Sometimes you wished everyone would leave you alone and let you live in a hole. But, of course, as soon as everyone would leave you alone you would start to wonder where they all went and why no one cares.

Having a sick kid is like the first breakup, 40 weeks pregnant, and the first month home from the hospital every single day.

I want people to read my mind. I want people to know exactly the right thing to say or I want them not to talk at all. I want people to be funny when it doesn't feel right and to cry with me at weird times. I want to speak the running commentary in my head and for people to understand what's going on.

To all of my friends and family who I have stared at blankly, not responded to, or seemed agitated with, this is what I'm dealing with.

People love to remind you to be positive and that things will get better. People love to be a cheerleader and believe in miracles. People love getting in your corner.

What people don't always know is that some days, I need to be down. Some days,  I want to feel the sadness, the disappointment, the hurt, or the loss. Some days, I want to do nothing. Some days, I want to eat chocolate peanut butter straight out of the carton. (Ok, every day I do that.)

Recently, my daughter's surgery was postponed. I've been mentally preparing for this surgery for 6 months. I was prepared for a major surgery with some pretty big risks. About 2 weeks ago, we changed the scope of the surgery to be less risky and I was so relieved! I could not explain that relief to anyone because I had not fully explained the fear that I felt for this surgery. I had a very true and very real fear that I may lose my daughter or lose some part of who she is in that operating room. For months, it's been weighing on me and in one short phone conversation, that weight was lifted.

Once the scope changed, my mindset changed. I was so ready to get this surgery done and to move on with recovery and the next phase of treatment. Then, last week, she spiked a fever from a quick bug and it affected her white blood count. For her safety, surgery has been postponed.

I don't have a rescheduled date yet, I can't start planning for it, and everything I had planned has changed. So now, my mind is racing with all the "what ifs" and scheduling concerns. I'm not happy with the new options on rescheduling because now I'm wide open but postponing falls into a busy time on my calendar. I had finally gotten to a place where I was at peace with surgery and now everything is changing and the uneasiness is back.

So, of course, the comforting words have come. Let me throw out a few things.

- I rationally can understand that surgery when she isn't well is a bad idea.
- I know that her health is more important than my calendar.
- I understand that God has perfect timing and He will be just as present with us on the new date as He would have been on the original date.

Let me also throw out something else.

- It still sucks.

Remember that when you are looking at the big picture and trying to provide comforting words, there is still a person living in that situation right then. They can't always pull back and look at the big picture because they are scraping by in the day to day. Yes, it's awesome to find the positives in a yuck situation but sometimes that person needs to feel the yuck before they are ready to zoom out and move past it.

So, let them cry into their pillow over lost love.
Let the mom-to-be gripe about how she's outgrowing maternity clothes. (Seriously, it's a thing.)
Let the new mom recount the last time she slept for 'x' amount of hours straight.
And for me, just let me whine about my calendar!

Friday, January 8, 2016


I heard a story yesterday that has stayed with me. A family travelled from Alabama to Ohio for treatment for their daughter at Cincinnati Children's Hospital (the same hospital that cares for my daughter). While their daughter was recovering from surgery, hospital staff found the mother dead in the child's room from an apparent drug overdose. The father was passed out in the bathroom but was revived by the team that was supposed to be attending to his sick child. Both parents had guns found on them. The mother was gone and the father was arrested. The child was left alone.

There are many reasons to be bothered by this story...the drugs, the guns, the children who will suffer. The thing that I keep thinking about is what was going on in the minds of these parents. What makes you think you need to have a loaded gun with you when you enter a children's hospital with your baby? What makes you think you should bring needles and heroin with you into your child's hospital room? Those questions I cannot answer.

There is one question that I can address, though...What makes you do something extreme, crazy, or even possibly out-of-character when your child is in the hospital?

I haven't crossed a line to the extent of these parents but as a parent of a child that has spent a lot of time in the hospital, I've done and said things that I later wished I had not. Watching your child endure surgical procedures and medical treatments and miss out on normal childhood development and playtime is very trying on parents. It takes a toll on you and pushes you to near breaking points. Everyone handles the stresses and pressures that go along with this life differently but the thing that gets you through one day and wakes you up to start the next is a choice. A choice to see either the horrible, awful, and hurting that surrounds you or the good, kind, and loving. They are both there.

This choice is not easy. Every day the choice is before you. Sometimes multiple times a day. I'll be honest, I don't always make the right choice. Sometimes the hard is too hard and I feel like I'm drowning. Sometimes it feels like its more than I can handle, more than anyone could handle. There are times that you want to not have to feel that anymore.

Drugs are not the answer. Guns are not the answer. Hurting your child is not the answer. Hurting yourself is not the answer.

The choice is the answer.

I've met people who endure so much pain as they watch their child suffer. In many cases the suffering lasts for weeks, months, or even years. Sometimes the children do not survive and those parents must continue on without their children. These people can still smile, still laugh, and still find joy.

There have been two Ronald McDonald House mamas who were living in the house at the same time as me who were arrested in the hospital for endangering their child. One of those moms I talked with daily. I ate meals with her and she was a friend to me at a time when things were very hard. I would have never guessed that she was doing the things that were videotaped of her doing. Her life was hard, her child was sick, and she made a choice.

I'm not defending the people who have done some very bad things. I'm saying that there is something that happens when you are pushed to the edge. In a split second, you don't always know what choice you will make.

So what helps you make the right choice?

Surround yourself with loving and supportive people. If you don't think you know anyone like that, keep looking until you find them. You may also need to let go of the people who are not loving and supportive.

My command is this: Love each other as I have loved you. Greater love has no one than this, that he lay down his life for his friends. John 15:12-13

Constantly be on the lookout for blessings around you and focus on them. Even in some of the hardest and lowest times with my daughter, I could always see blessings. If you start noticing them during your good and neutral times, it will help you find them in the hard times more easily.

The Lord bless you
and keep you;
the Lord make his face shine upon you
and be gracious to you;
the Lord turn his face toward you
and give you peace.
Numbers 6:24-26

Know that even if the worst case scenario happens, you can handle it. We have been told on a few occasions that our daughter might not survive for one reason or another. That is my worst case scenario. The way I handle that is to constantly focus on the fact that this world is a blip on the radar of God's plan for us. We are promised Eternal Life if we believe in Jesus Christ and follow Him. Eternal Life means that an Earthly death is not our end and does not have to be feared.

For my Father's will is that everyone who looks to the Son and believes in Him shall have eternal life, and I will raise him up at the last day. John 6:40

You always have a choice. And the best part is, if you make the wrong choice, it's not the end either.

Repent, then, and turn to God, so that your sins may be wiped out, that times of refreshing may come from the Lord. Acts 3:19

Saturday, January 2, 2016

Blessings of Sick Kid World

When our daughter was diagnosed with a brain tumor a little over a year ago, we entered a new world - Sick Kid World. Sick Kid World is very different than the world I was living in before. While I would give anything to have never had to enter this world, I am grateful for the lessons I've learned and the bonds I've formed here.

In Sick Kid World, the parents are all supportive of each other. No one cares about bottle feeding vs. breast feeding, cloth diapers vs. disposables, spankings vs. time outs. We live in a world of life vs. death. If your child is making it, keep doing what works. We don't judge and we don't make fun of one another. We are supportive. We uplift. We encourage.

In Sick Kid World, the parents allow themselves to not be perfect. We don't have time or energy to keep up with the Joneses. Instead, we try our hardest to do all we have to do and try not to stress the rest. If someone comes by the house and dishes are piled in the sink, it's ok, it's life. If we never do a Pinterest craft, we're okay with that. Our families eat three meals a day but a few of those might be takeout. And, we may rarely wear make-up, jewelry, or real clothes, but we often wear a smile.

In Sick Kid World, others around us show us love. We get cards from friends and family but also complete strangers. We have a prayer network that is bigger than our friend network. When people learn that we have a child who is sick, they offer to help in any way they can. People are kind. Kinder than they ever have been before.

In Sick Kid World, the kids are kids. Often, as parents we say, "don't play with that", "don't do that", "don't run", "don't talk too much", "don't, don't, don't". In a world where our children spend too much time in hospitals and at doctor appointments, we cut them some slack to be kids. And it's not only the parents but others around them. I often have people from church come and tell me, "we love hearing your children play during church". Normally, noisy children can be seen as a distraction or annoyance but when people know of a sick child's story, they smile when they hear them laughing, playing, or even fighting with their brother.

I've formed the strongest bonds of my life with other members of Sick Kid World. In our previous lives, our paths may never have crossed and we may not have had much to talk about. In Sick Kid World, we strip away everything that matters in the "real world" and we are just our real, raw selves. We talk about more than just our sick children. We talk about the blessings we see around us, the things in our lives we are grateful for, and the hope we all share. We celebrate together and we grieve together. We are the truest form of real.

So yes, I have a sick kid, but I am richly blessed. My world is loving, supportive, kind, and encouraging. I wish that described everyone's world.