"I have a dream. I have a dream, I just wanna see the floating lanterns gleam!" Are you singing the song from Tangled right now? I really hope so, if you have no idea what I am talking about, then check it out...it's a pretty cute song. Now some people may say that their dream is for the medical community to find a cure for CU, but to me that is a wish because it's left out of our control. What I am talking about is something else. It could be a dream job or the experience of a life time and nothing infuriates me more than hearing someone with CU tell another that a dream job or experience is out of the question due to this condition.
Right about now you are probably wondering why am I telling you this. Simple. I have seen people in the CU community tell others to give up their dreams because it will never happen, and their dreams are a lot more realistic and obtainable than mine. There is one story I still think about today, which happened almost 5 years ago.
When the kids were first diagnosed, I like many others started checking out support places. Facebook was the place I found something. At that time there was one page, so naturally I clicked the "like" button. I only made it a couple of weeks before I decided this page was not for me and in part one of the reasons I have started everything I have. So what did this page do that irritated me so much? They completely thrashed a mother's hope for her son.
This mother, like me had gone to the page for support. Her teenage son had been just diagnosed with CU and like we all are in the beginning she was having a hard time wrapping her head around it. She talked how he wanted to be a chef, it was his dream job but she was concerned because of the frequent hand washing and holding cold things. Instead of supporting this mother, the page responded to this post with "he will never be a chef and he needs to find another dream." No support, no let's try to think of other ways he can do things, no question as to meds or telling them to work with a Dr. and try a different med combo....there was NO HOPE. I still wonder about this mother and her son, but most importantly I hope that he's in or has graduated culinary school.
I think this upsets me so much because of Taylor. She wants to be a marine biologist when she grows up and if we are going to tell people they can't be a chef, what are people going to say to her and will they think I am crazy because I fully support her. Do you think I'm crazy for supporting her? Well let's break it down like this. We all know that marine biologists work around water and the ocean. Some of us may even picture the guys riding around in the little boats during "Shark Week". After all they're marine biologists. So the questions start: What if the boat sinks? What if she goes into anaphylaxis in the middle of the ocean? What about the breezes? Why don't you talk her into something else? How can you set her up for heartbreak by supporting this? Simple...because not all marine biologists ride around in those little boats in the ocean. They work at Aquariums and Zoos, Wildlife Rehabilitation Centers, and at colleges or consulting firms to name a few. So why, WHY would I tell her no, you can't do this? She can have her dream job and still be safe. If she changes her mind between now and then, that's on her, but I will never tell her not to go for it.
Connor's dream job changes from day to day but he's only 7. He's gone from a NASCAR driver, a monster truck driver, to most recently a football player. Now a football player gives one huge obstacle, the weather. And that may be something we can't get around unless he plays in the arena football league. But there are other options for this as well, like coaching or a general manager of the team, but again he is 7 and things change so fast for them.
So for now I will continue to encourage my kiddo's to follow their dreams and I hope you still encourage your kids or follow your dreams yourself. And while your at it, let me know in the comments section what those dreams are!
ABSOLUTE HILARIOUS UPDATE: We had to take our son to the Dr. last week. Our PCP was out, so we saw the doctor covering for her. After making sure Connor was OK the Dr. and I started talking and he said that with how severe Connor is and Taylor's problems with air conditioning, he would recommend Southern France. FRANCE!!! Of course I started telling him about my dream and we talked for about 20 minutes about how amazing the experience would be. I came home and told my hubby and the look on is face was priceless. While I wanted to hug the doctor, my husband was praying we never saw him again. BUT that night, he agreed if I could find a way to buy a class 1 and pay for the renovations he's in!!! So, any psychics outs there, feel free to contact me with the winning lotto numbers or stock predictions. ;)