Strength

The last few days have been heavy. I feel like I have been cramming for final exams, even though there was not a test. Trying to fit every piece of information into your already overloaded brain. Words like missense, truncation, channelopathy and dysautonomia coming through in your dreams.

We learned a lot at the IDEA League conference. Even though we listened to lectures and I had a sense of de-ja-vu about being back at medical conferences, like I was working again, we came out with more than information. We came out with friends. Some of these people will be our life long friends and even though we don't live in the same state, town, or even country; we will share in the joys and triumphs and also the trials and sorrows it comes from raising a child with Dravet Syndrome. Here is a picture of the group who are lucky, we all got diagnoses fairly early. Kids in this group range from 10 months to three years old.It was liberating to have multiple people who understood our version of "normal". To swap horror stories and laughter felt great. We have not been social for a while, for obvious reasons, and we are both social people. It was kind of an out-of-body experience to witness multiple seizures and everyone knew what they were doing. One child at the conference accidently pulled the fire alarm and we all started to worry about the same things. The noise, the flashing lights, we will have to go outside-get the glasses and hat, bring the cooling vest. It was almost comical. At least we can laugh at ourselves.

I think the main thing that I will bring home from the conference is strength. Strength to keep fighting. Strength from good people supporting each other when you feel like you are so alone. Strength to know that I have resources now. I am exhausted, kind of similar to after finals week, glad that it's over...but realizing that the knowledge you gained will probably help you someday.Cole had a blast with his grandparents. He had an incredible week, with no major seizures! When we walked in the door this afternoon, saw his smiling face and heard his laugh, we felt strengthened to fight for him-because he deserves it...just like every kid out there with Dravet and other rare disorders.

In the words of my lovely friend Vanessa from Australia..."You are my friend. I love you. You can come to my house anytime...and I will make you a milkshake". Each of you is welcome into our world, virtual or physical-and I can make a mean milkshake. Strawberry is Vanessa's favorite. Find the strength to fight for her.