Happy Rare Disease Day..

Today is Rare Disease Day. A rare disease, in the United States, is defined as a disease that affects less than 200,000 Americans (www.rarediseaseday.org). Cystinosis affects approximately 500 people in the United States. Sometimes, when I actually think about this disease, and the fact that it affects our little boy all I can think is "Seriously?!" Today is one of those days. It all brings about mixed emotions. I'm proud of how far Landon has come, we have come, in the past 8 months. Yes, it has been almost 8 months since he was diagnosed. He is doing so well, but it still feels like a dream at times. That's why I don't let myself really think about it often, because I think I would go crazy. We accept the cards that were given to us and we make the best out of it. We wouldn't trade our son for anything in the world and are totally convinced that he truly is the sweetest, the cutest, and all around best kid in the world. He is a blessing to us. We are so proud to be his parents.

Jimmy was talking on the phone the other day and I overheard him telling the person on the phone, in so many words "I can't let myself think about him being sick and what's going on. If I thought about it like that then I'd be pretty messed up." It's not denial.. At least I don't think. Thinking about what may or may not happen, the fact that everything is a little more complicated for Landon and that he doesn't just sit at the table and have a meal with us but gets most of his nutrients from a feeding tube, and then he takes so much medicine, and that so many doctors know him so well... Thinking about the odds that two people who fell in love, who chose to welcome a child in the world had the same "messed up" gene...If we thought about those things on a regular basis, we may not have the same optimistic attitude about it all.

I shared something with one of the Cystinosis groups that I am a part of on Facebook the other day. Someone posted about feeling guilty as a parent who is healthy, in having a child who society says is not "healthy." My response was that I get it. I have been to the doctor a few times in the past 6 or so months. I fill out the intake form and always indicate that I have no health concerns and take no medication. I am a very healthy person. And when I complete these forms, I get a surge of guilt. Here I am, no health problems and when I complete these papers for my son, I run out of space to write all of the medications he takes (total of 8) and all of what he has been diagnosed with (Cysinosis, Fanconi Syndrome, Delayed Gastric Emptying, Hypothyroidism, Rickets- I think that's it). Another mother responded that God makes us healthy because we would be useless to our children if we had our own issues to deal with. Smart woman, right? She's right. I have been blessed with good health and I have a responsibility to take care of my health so I can continue taking care of Landon. Beginning on January 1st, I started to make some healthy lifestyle changes. It began for vain reasons... I wanted to lose about 20lbs and feel good about the way I look. But, it has become more than that for me now. I will be honest in saying that I've had good weeks and bad weeks and good days and bad days. But, I have lost over 10lbs now, have lost inches, am exercising regularly and have made some changes in my diet. I no longer drink pop (soda) and have stopped by food items that are high in sugar. I also drink a lot more water than I used to drink. I want Landon to see that exercising, eating a healthy foods and living a healthy lifestyle is just part of what we do. I hope to not only set a good example for him, but also to keep myself healthy so that I can take care of him. I owe it to my family.

So, friends, Happy Rare Disease Day (it sound strange to add "Happy" in there)! Do me a favor and send extra hugs and kisses to Landon today!