Saturday, May 26, 2018

So Big and So Small

We've had an intense week and I have a lot I want to share but I'm gonna have to do that over a series of posts so stand by for a few blog posts with updates over the next few days/weeks. Today, I want to talk about something that struck me throughout this hospital stay.

We arrived at Cincinnati Children's Hospital Monday morning at 5:30 a.m. for Tillery's 16th surgery. She walked across the street and up the sidewalk and all the way to the desk by herself. When we got onto the 3rd floor, Tillery went straight to find the TV that shows cartoons and when they called her name, she navigated the back halls to do her height and weight check without instruction. As I watched her, I kept thinking how big she has gotten. I reflected on all the times we have brought her over in a stroller and the days when she needed instruction on where to go and what to do. But she's grown up in this hospital and she isn't the same fragile baby we first came here with. Now, she's a fierce warrior child who has fought her way to survival for 3 and a half years. Now, she's so big!

Then they put her in the hospital gown and put her on the bed. She laid back and they gave her a blanket to cover up with as she watched a movie. The same day surgery room became a revolving door of nurses and doctors coming through with many of the same questions and asking for repeated signatures. They went through lists of risks and emergency plans. We signed consent to treat, consent to give blood, and consent to save her life. As we went further down the rabbit hole of surgery prep, I would look over at Tillery laying on that bed and think, but she's so small!

When we started to roll her down the hall to the operating room, I remembered the 15 previous times we had walked this walk. This isn't our first rodeo and this surgery didn't come with the fears that many of those other surgeries came with. This time was different because we have watched her be a survivor of surgery for 15 previous surgeries. So I start to think, she's so big!

But rolling her down the hall, we passed many doctors, nurses, and other hospital staff and they all make the same face. It's a face that says both "she's so cute" and "bless her heart" and really communicates the thought...She's so small!

After surgery, we were called back to the all too familiar post op recovery area, where Tillery lay on a bed, sleeping. She is much bigger than previous times and fills more of the bed. It's not a baby laying there, but she really looks like a kid. Her bandaged head isn't as scary as it has been other times because it doesn't look as massive as it has in the past. She's bigger and it's all a little more comfortable. But then, I sat back and looked at Joe looking down on his little girl and I see the relief in his eyes. Even though anesthesia and surgery are nothing new, as parents, we hold our breath until we see them again on the other side, no matter how many times we've done it previously because they are still our children and to us, they are still so small.

This paradox of her being both big and small continued to play out throughout our stay. She was so big when the nurse asked if she needed anything and she responded with a detailed answer of her needs. She was so small when she felt strange and cried without knowing the words to communicate what she was feeling. She was so big when she wanted to go for a walk down the hall but so small when she got out there to walk and you saw her tiny self in her tiny pajamas walking down that big hallway. She was so big when she was asking for toys or wanting to watch a favorite movie but so small when she was tired and needed breaks to rest.

Tillery is only 4 years old but can navigate the hospital better than most adults. After a major surgery that caused swelling, fevers, and even seizures, Tillery took nothing stronger than Tylenol for post op pain. When they came in to remove the bandage and they asked if they should do it fast or slow, Tillery requested fast. She's strong and she's brave and she's tougher than most of us would be in her shoes. But she didn't have a choice in the situation she has faced. She probably wouldn't have chosen to face the pain and hardships that she does but rather, has had to adapt to them. She had to learn to be so big, even though she is so small.

3 comments:

  1. This is beautifully written - trying not to cry - she is big of heart and bravery and still small in size for one fighting such a huge battle - thinking back to the first time i saw this sweet little tiny baby in her hospital bed and learned of Tillery's story - all the tubes, etc. and this precious baby - she has come a long way and watching her walk even now makes me smile. much love to you all- Cindi

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