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!