As Tillery’s mom and caregiver, I’ve been through almost all of this journey right alongside her. I’ve written many of the posts and blogs you have read so most of what you know is my perspective. Many of you have commented on my strength and how you don’t think you could do what I do. Allow me to share the full truth…
On the day Tillery was diagnosed, after they told us about the tumor and then took us back to see her, I was scared to touch her. I had very little experience with hospitals and sick people made me uneasy. I didn’t know if it was okay to hold her or if it would hurt her. I didn’t know if I should sit or stand in her room and I definitely didn’t think I should sit on her bed. It took many days in the hospital before I started to feel a little bit “comfortable” with our surroundings.
When Tillery had to have her bone flap removed for 2 ½ months, I was scared of her again. I didn’t know how to keep her from getting hurt. I didn’t even know how to wash her head or hair. The side ponytail style was invented to distract from the indention on the other side of her head that seriously terrified me.
Last summer was a sea of vomit and thermometers. There were countless calls to the hospital and many ER trips. I was unhappy with what our reality was shaping up to be. While people praised my positivity, I was secretly very sad. I started to think that was the “new normal” everyone kept telling me to embrace but I most definitely did not want any part of it. Again, I was scared.
That’s what this journey is, it’s a rollercoaster of scary new challenges mixed with exciting walking highs. I try to be pretty transparent here about our experiences. It’s not always easy and we aren’t always strong.
Lately, though, things are good. I feel like we are normal people (or at least the amount of normal that we will ever achieve). We are slowly cutting out medicines, weaning therapies, and cutting back on time in medical offices. We are going to playgrounds and dining out. We have come to a time when I can breathe and sometimes even forget.
Now, I’m a mom who wants to pee in privacy. I want my kids to stop whining and to pick up their toys. I want to go to Target and get a Starbucks. I want the kids to eat their lunch instead of claiming not to be hungry, only to ask for a snack 20 minutes later. And, I want my kids to always be best friends. Pretty standard mom stuff.
My super mom strength only kicks in as needed in times of crisis. The rest of the time, I’m fueled by caffeine and the hope of a long nap.