Living a Different Dream - Aria's Story

differentthumbUp until about a year ago, when someone from my past would ask me what I've been up to I would always respond with "I'm just living the dream". It was true. We were living the dream.

Before Daisy was born, we were that couple who went on weekend getaways and vacations with our dog and cruises with our friends. After we had Daisy we were that family who went on frequent weekend getaways, day trips, and vacations with our adorable little daughter. We couldn't wait until Daisy was two so that we could take her on her first cruise.

Since having Aria we've become that family who everyone pities. We're that family who can't go to the grocery store without fielding a million questions. We're that family who is afraid to go on a vacation. We are that family who won't go visit the grandparents two states away because we are afraid our child might get sick and need medical intervention that can't be provided locally. We are that family who will never again go on a cruise because our child is too medically fragile to be floating in the middle of the ocean, far away from a surgical suite. We are that family who will never again leave the country because we always need access to the best care at a moments notice. We are that family whose dream has been shattered. Most days, if you were to ask me what I've been up to, I'd reply, "I'm just living a nightmare".

With that said, I still realize we are quite lucky. I'm slowly coming to terms with the fact that I need to redefine "the dream". We can still live the dream if we're willing to change our expectations. I'll get there. I need to get there for my family.

So, over Father's Day weekend Kevin and I decided to get back to living a different kind of dream by going on our first family getaway since Aria got home from the hospital. We wanted to stay close to the children's hospital just in case so Kevin booked us a room at one of those hotels with an indoor water park that happened to be within a couple of miles from Aria's doctors. Daisy loves splashing in the water and Kevin loves slides so it was a perfect choice for a Father's Day getaway.

I was so afraid I was going to forget something. Aria requires so many supplies and it's not like it's stuff that you can just head to the local pharmacy to pick up. If you forget something you are screwed. Once packing was completed I had one small suitcase full of diapers and clothes for the whole family and three other bags full of supplies for Aria (drugs, food, tubes, pummps, syringes, aspirators, etc). I can only imagine what the hotel staff thought as we checcked in for two nights with our bell cart full of four bags, a feeding pump bag, and cooler, a pack-n-play, and a double stroller. They probably thought we were high maintenance. They would be horrified to find out just how high maintenance we really are.

livingdreaminsertWe checked into our room and immediately headed to the indoor water park. On the first day Aria was really frightened by the water. Even though she and I weren't able to spend as much time in the water as I had hoped, I loved watching Kevin and Daisy play. The second day I took my time getting Aria into the water. Guess what? When I really focused on her and followed the cues she gave, we were able to get all the way into the pool. In fact, Aria loved the lazy river. By the end of the second day I could simply hold my hands under her head to keep her face out of the water and let her float along the current on her back. She was so relaxed in the water. I think she cried less that day than she has on any other day of her life.

Between multiple trips to the pool we went out to eat, ordered room service, and just hung out in our room. Our first trip as a family of four was more low-key than any trip we had been on before but I wouldn't change it for anything.

It was the perfect getaway for our family...creating a new kind of normal...living a different kind of dream.