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. :)