Kittymomma's Adventures

When I think back over my time with Lucy, some of my best memories are from when she was in the hospital. You wouldn’t think that would be the case. The hospital is not usually a fun place to be. But she did spend roughly a month altogether of her 15 month life in one hospital or another, so there were bound to be some good times.

Lucy spent ten days at Dell Children’s Medical Center when she was first diagnosed last November. She was mostly in the PICU. She was hospitalized again for a “tune-up” last February. The night before she was to be released, she had an episode of ventricular tachycardia. She was summarily returned to the PICU and then airlifted to Children’s Medical Center of Dallas the next morning. She spent the next two and a half weeks there, first in the Cardiovascular Intensive Care Unit, then on the regular cardiac floor.

One reason for the good memories of these places is that the people who designed them obviously put a lot of thought into making it easier for children and their families to be there. Dell Children’s has a great coffee shop, the Holy Roast, as well as a darling gift shop. The cafeteria is decent and there are sibling playrooms and a “Healing Courtyard” that looks exactly like it sounds. The doctors, nurses, and staff are wonderful. Not to mention, it is right in the Mueller complex, so there is a Starbucks and a Chipotle right next door.

Children’s Medical Center has a Starbucks INSIDE IT (Although it was pretty far from Lucy’s room and not open on weekends!?!?) and a trainscape that takes up an entire room. Max still talks about going back to it. There are also playrooms and several good dining areas. Ryan Seacrest even set up a recording studio in the lobby (which has a ceiling of sparkling stars) and Stephenie Meyer had a book signing while we were there.

All of these amenities went a long way towards making living in a hospital for weeks at a time easier. But the real reason I have such wonderful memories of my time with Lucy in the hospital is that I got to be with her all the time. I got one-on-one time with my second-born that most parents only dream of. And especially after Chris and I both started staying there every night and we were transferred to Dallas, I just felt like almost everything important in the world was in that little room. The only person missing was Max. Those hospital rooms were our world. I would curl up next to Chris on the foldout hospital bed every night (The bed in the CICU in Dallas was no bigger than a couch.) and listen to Lucy breathing and feel so content. And I would wake up in the morning and see her first thing and just be, well, so glad to see her. Especially at first when we never knew whether she was going to make it through the night.

Being in a situation like that gives you such clarity. It helps you cut through all of the b.s. and focus on what’s really important. I’m sure you’ve all heard that before. I always hoped that it would last once we were out. But part of me knew it wouldn’t. I also knew that was the way it was supposed to be.

We were able to just appreciate the present more once Lucy was released from the hospital. Whenever I would get worried about the future and getting through transplant and possibly losing her one day, I would remind myself that she was alive right then. Every night, I would remind myself that everyone was alive and at home together and that was enough.

But life did return to normal. The last two months of her life were beautiful. There were times between doctor visits that we could actually forget she was sick for awhile. We would get caught up in all the flotsam and jetsam of life and it was heavenly.

I remember telling my former therapist once that it was so nice to feel “normal stress”. Never was that more true than in those last two months of Lucy’s life.

So, I think back sometimes to those days at Dell and Dallas. I remember the heightened emotions and how it was a victory when a minute, an hour, a day, then a week went by without vtach. How we found joy in our daughter’s presence. How we experienced uncontrollable panic every time we thought we were losing her. How everything was right in the world when we finally brought her home and Max rushed into our arms and tackled his sister joyfully saying, “Everything is back to normal!”

I would like to go back and visit those rooms. Lucy finally learned how to sit up at Dell. She learned how to hug her doll and smile for the camera at Dallas Children’s. We lived a lifetime and became a stronger family in those rooms. I hope that everyone who ends up in them now can feel the same joy, determination, love, and devotion that we did.

An update on the potty-training situation today – three accidents, one of them in public. Sigh.