At the beginning of this month my family went on a wish trip for my daughter, Carla. Carla is 4 years old and was born with a heart condition called Hypoplastic Left Heart Syndrome. Essentially, half a heart. She has had a very difficult couple of years and in March she was listed for a heart transplant. Carla, being a princess herself, wished to meet the princesses at Disney World. So, we left on October 2nd for her Disney World Adventure. And I have to tell you....what an adventure it was. Carla got to meet and visit with all of the princesses. We were given the opportunity to spend 3 days in Disney World, a day in Sea World and 2 days at Universal Studios. On top of that we were staying at the Give Kids the World, which was kind of like a theme park in itself. Everywhere we went, everyone referred to Carla as Princess. It was all about her. She got to meet Pluto, Mickey and Minnie, and all the Princesses. Every day for a whole week it was a new adventure. And, as the week progressed, we watched our daughter grow. Her imagination was taking off and so was her confidence level.
The week before our trip, Carla said to me. “Going to Disney will be kind of like going to the hospital.” I told her it would be so much better than going to the hospital. The funny thing is that, going to the hospital has been the only planned trip our family has been able to take since Carla was born. Before she was born, we used to go on a family vacation every year. But since, it has only been surgeries or hospital stays. So this trip was special for our whole family. It was also special because this year has been a particularly difficult year. In March, Carla was hospitalized for 6 weeks. She was on the brink of death more times than I can count and this is when she was listed for a heart transplant. Even after coming home from Salt Lake, nearly 10 weeks later, it was hard to believe that everything was going to be alright. If you have never been through it yourself, it is hard to imagine what emotions go through a parent’s mind, when a child is so sick. Even after she was better, we couldn't get our lives back to feeling normal. We still have the upcoming heart transplant, and the sheer horror of what we had gone through had somehow sucked not only the joy but also the optimism from the very depths of our marrow. For the past several months, we have been living as shells of the people that we once were. Just trying to make it through to the next day, having serious anxiety issues and being thankful that we still have our daughter.
Carla’s Make A Wish trip was such a huge turn around in our family’s state of mind and well being. That much needed break from the world, all the love that was placed upon us, and all the happiness we saw Carla experience, watching her grow, change and acting more like a “normal” four year old, had a way of somehow filling us back up and replenishing our souls. Before Carla’s wish trip I was broken. Not a day went by that I wasn't filled with anxiety and worry. But now I am whole again. So, if you are inclined to donate to a cause, I whole heartedly believe that Make A Wish is an amazing cause. It not only changed our daughter’s life, but also our whole family’s. We cannot thank them enough. Thank you.
As I said these words the Once Upon a Dream picture medley played behind me. The sound was turned off, but everyone got to see our vacation pictures as I spoke. Afterwards there was a lot of kleenex and hugs going around. I found the experience to be very rewarding and told Cynthia, the Make a Wish lady, that I would be willing to speak again if they ever wanted or needed me to.
In other news: Carla had a finger poke on Wednesday and they have decided to bump her coumadin up to 4 mg a day, instead of 3.5 She has had a couple of low readings, so that's good. Also, when I refill Carla's meds, we are changing her blood pressure med to one that the transplant doctor feels a little better about, to get her ready for her transplant. Also, we have spoken to the doctors about changing transplant hospitals to Seattle Children's. I know, this is a big decision, and nothing has been finalized. I wasn't going to say anything until after we finalized everything, but I changed my mind. I like the idea of Seattle for a couple of reasons. We have family and friends in the area, a support system that we just don't have in Salt Lake. Also, Seattle is pretty darn close to sea level, and Carla did so well at sea level, so we think that it would be easier on her. Also, we like the Seattle area. It is someplace that we have considered living in the past (and Bobby actually spent his teen years there) so, it just feels more like home than Salt Lake. We look forward to talking to and meeting our new medical team in the near future.