Dreams Come True?? If Only....

Warning...this will be an emotional post. One of the first things we thought of when Tucker got his diagnosis two weeks ago was signing him up for a wish. I have actually thought of it before then....I knew that "whatever" he had was not good, and that he would likely qualify for a wish at some point. And we have given him so much over the years, but there are some things he might wish for that we just can't give him right now....which is what those wish organizations are for. So I knew about the local Dreams Come True organization, they give wishes to kids who are 2 1/2 or older with life-threatening conditions in Louisiana. Chris and I want to give Tucker every opportunity in life that is available, whether he is with us for a short time or for 90 years....we will take every opportunity available. That being said, it felt kind of funny to fill out the dream application. Here was my 4-year-old boy, running around at my feet, happy as can be emptying out and refilling my purse-why was I bothering this Dream organization with my kid's problems? Surely there are kids and families out there more deserving than us and in greater need....kids who actually "know" that they are sick and live with that fear everyday....Tucker lives life with no fear ;) and he wouldn't know if he missed out on a wish. Chris and I filled out the application, Chris actually wrote it since my handwriting is atrocious. So we faxed it over to Dr. K's office and waited for an answer. On Monday morning I had an email in my inbox from Dreams Come True (DCT) saying that Dr K marked that Tucker's condition is not life-threatening, therefore they could not give Tucker a wish. My heart leapt for a moment, thinking the last two weeks was just a bad dream....there is a song on Christian radio where one line is "you're wide awake, in the middle of your nightmare, just believing that your situation's unfair" well I have been thinking that a lot, just hoping it was a nightmare. So maybe Chris, Mom, and I all had a hallucination and misunderstood the doctor? I replied to the email, saying that of course we hoped Tucker's condition was not life threatening, and I apologized for the misunderstanding. Then I emailed Dr K's nurse. I explained that my family has been dealing with this diagnosis for nearly 2 weeks, and we were fairly sure it would take his life....so to hear the opposite from DCT was very surprising. Then I waited for a reply, while we all silently hoped for good news. My friend Missy (saving the day with information as usual!) explained that Dr K often defines life threatening differently than other docs, so just keep that in mind. Well, she was right. The nurse emailed me back, she said that Dr K only labels kids as "life threatening" when they have a year or less to live. At this time, Tucker seems to be in a healthy state, and barring metabolic crisis or infection he should stay that way for a long time. Any of this could change at any moment, and if that time comes, they will re-apply for us. So I sent this information on to DCT, and I again apologized for any confusion and wasting their time....but really, in the back of my mind, I "knew" that Tucker was eligible for a wish. Because by the time his illness gets that bad, he may be too sick to actually go on a wish trip....so I think Tucker is exactly the kind of kid they are looking for. So today I was sitting on Tucker's bed watching him play toys (per his instructions!), and I got a phone call. It was Becky with DCT saying that Tucker's wish is approved. We chatted for a few minutes, and she said Tucker's condition is definitely eligible, and Dr K's nurse was happy to explain more about mito to the DCT committee so that they could grant more wishes to mito kids in Louisiana in the future. The DCT lady thanked me for helping to open doors for other kids to get wishes. Two people will be coming out to our house next Tuesday to meet Tucker and "interview" him to decide what his wish will be. We are not really in a rush for any of this, I am sure that many of you are wondering if we are moving too fast or are jumping the gun....we know how quickly this disease can change and/or progress, and if Tucker had greater medical needs I just don't think we would feel comfortable going on a trip at that point. Back to my original point that we want to give Tucker every opportunity as it comes, not wait around... Well I have so many emotions about Tucker getting a wish. I'm kind of happy, but not really. That would just be bizarre. No parent ever wants their child to be eligible to receive a wish. I have so many dreams for Tucker, so many wishes....and this organization can't grant any of these. They can help Tucker, Chris, and I to create some happy memories by granting us a wish, giving us a chance we would not have had otherwise....but our real dreams, that mito will go away, that we will be guaranteed a happy and healthy son that we can watch grow through the years....not so much. On the other hand, if DCT had denied Tucker a wish, I would have been upset also. I would have felt that they didn't really understand his condition and its severity. Also, DCT can give our son a wish that we likely wouldn't be able to give him for a long time, whether that's going on a trip or whatever else. So right now I am just grateful that organizations like Dreams Come True exist. Our family is going through a rough time right now, and organizations like this are there to give these kids and families a wish, to help them have good memories, and maybe a chance to be more "normal" for a short time. I think knowing that Tucker was granted a wish makes this whole situation seem more real...and along with the fact that Tucker starts 4 year old preschool tomorrow in a class for special needs kids....I have had just about as much as reality as I can handle today! Look for more updates about school and the wish process, I am sure Tucker will love both!