Rare Disease Day

Today is Rare Disease Day. Eleven years ago, today would have passed without a blink or a thought. Eleven years ago I didn't know what "Dravet Syndrome" was... shoot, many doctors didn't even know! This is what a Rare Syndrome has brought into our life:

1. Humbleness : I have had to learn to lean on people more than I want to. I have learned to accept that there are times during a "bad spell" that it is hard to get dressed in the morning because Melorah needs me every minute. Those days are usually the days I have to sign for a package or something else equally mortifying. :)

2. Tiger Parents: From our dear friend in Greece who coined the term "Tiger Parent" after a poem he wrote, we have become Tiger Parents. We have learned to become Melorah's advocate in all ways.

3. Seize the Day: We don't know what tomorrow will bring or if there will be a tomorrow. We have learned to be more spontaneous and try to make every day count.

4. Adaption: One room in our tiny house is now a therapy room. We now have a HUGE therapy horse that sits in there (see above picture). A small Christmas tree is up year around. Why? Because it bring Melorah joy and we can decorate it for each season. I recently found a three ring binder of all the pictures I had collected in our early marriage of how I wanted the house to look. My tastes have not changed much but our life did, so I put the book back away. It is not about things or how decorative your house looks, it is about your family and their needs. That is what makes a home.

4. Leaning on God: I am a self confessed control freak. I can't control Dravet syndrome. Shoot, half the time I can't even understand it. We are learning (which I needed to learn!) to give up control and give it to God. Yea, I still struggle with that one.

5. Joy: To be 11 years old and function at a younger age with complete innocence. She takes great joy in her friends and family. Holidays are so exciting to her. She even saw Santa Claus looking out the window on Christmas Eve and woke up at 1: 30 AM Christmas morning singing "Happy Birthday to Jesus." That is joy!

For more information on Dravet, please visit: dravet.org

Just added: Epilepsy Foundation just announced a grant for Dravet Syndrome! So exciting to see a new grant especially by the Epilepsy Foundation. Had to scratch my head at some of the comments though. There are definitely some contradictions out there. Hmmm. :)

I lost count today.

Of how many times I washed Melorah's sheets, comforter, blankets, p.j.s and wet pad. I stopped counting after 5 times and vinegar (my tried and true) wasn't cutting it this time. It was not a good night (again). I had to get a garbage bag to carry everything down because things were dripping. And this is where I say "thank goodness we have hardwood floor in her room." My nose could STILL smell the urine. It was kind of like when she had the accident over the heating vent. Yea, I had forgotten that until today. It is amazing how your sense of smell can bring a memory back. :)

On My Soap Box

Last week in the Washington Post, there was an article about another Dravet family. You can read it here. I have signed up for "google alerts" that tell me when something is posted about Dravet syndrome. Since that article was written, many people have blogged about it.... in very ignorant ways. So here are a few tips to those bloggers (as if they are going to read this... LOL):

1. If you are going to blog about an article, please read it first. You look ignorant when you blog about it and admit that you don't read it. Also, if you did read it, make sure you read it all the way through, it seems that many people (by the content of their blogs) only read the first page or maybe just read what they wanted to read!

2. If you are going to state your opinion on a syndrome, again research it. Don't believe the comments that are written after then article because many are just plain stupid. Does anyone remember the "telephone game"? This is how rumors get started!

3. If you have the audacity to say something about someone's house, make sure that it is in the article because no where in the article does it mention that this family has "toxic mold" in their house. As most people should know, mold is everywhere... including outside. And most people are allergic to it.

4. AND to clarify... no where in the article did it say that the vaccines CAUSED the syndrome.

5. To finalize, if you feel that you MUST share your opinion, you really ought to also open your wallet and make a donation to dravet.org, since you feel that you can express an opinion about a syndrome and how it affects the children with that syndrome. Get off your bum and do something worthwhile. :) Now, THAT will help the children.

And to tall the commenters (or at least a vast majority of them) that commented after the article, I believe you just like to argue. One commenter even said that he did not read the article BUT he still commented. Now, that dear friends is ignorance in its highest form.

Okay.... stepping down off my soap box now....