I remember the first time we took Meg to Walt Disney World! It was for Mickey’s Very Merry Christmas, she was 4 months old and I was really nervous about the trip. Meg had started having seizures just three months prior and we had spent so much time in and out of the children’s hospital they had begun to know her by name. It was our first trip as a family and I remember talking to her epileptologist and asking him if we should go? Where were the hospitals? What if she were to have a seizure at the park? How would we handle the people around us? Our epileptologist reassured us Orlando had great medical care for children with epilepsy “just go… enjoy yourselves!” So we decided to go with our family, who had originally planned the getaway!
I remember arriving late and being so nervous, so full of anxiety! The parade had already started so we made our way through the crowd and found a spot where we could see. Erich had picked up Meg and there were these big, bright, illuminated toy soldiers marching towards us. I glanced over at my daughter, so content in her daddy’s arms, and I could feel my throat start to tighten and my eye begin to well, she was so beautiful and she was smiling! I wasn’t sad! For the first time, in our short journey, I felt like everything was going to be okay! For that brief, but precious moment I could let go of all the fear and anxiety and just fully submerge myself in her joy! Tears streamed down my face as the parade came to an end and we made our way to the hot chocolate and cookies stand. My husband looked at me and I didn’t have to say a word, he embraced me and even though we were standing in the middle of thousands of people we shared a special moment, just the three of us!
Eleven years later, we are more informed about epilepsy and aren’t quite as nervous or scared about taking trips to Disney! We now know with most parks or venues we can always call ahead to find out where the medical facilities are located and what their protocol is in the event of an emergency. We know seizures can be scary, but we also know Meg’s seizures can be managed with the right combination of meds and her epilepsy should never prevent us from getting out and enjoying life.
Lately there’s been a lot of controversy surrounding Walt Disney changing its Guest Assistance Card Program. Our family could easily benefit from this program, being my daughter has epilepsy and I suffer panic attacks, but we choose not to use it!
Not because we don’t need it, but rather we’ve always felt there are other families who need it much more than we do, but knowing the program exists is comforting!
I’m deeply saddened and disappointed by the poor choices of a few and outcries of others who don’t fully understand the negative impact they’re having on special needs! They don’t realize how their actions can and will change the system in place that has worked so well for so many special families. It is so important for Disney to send a strong message that they stand with special needs as they’re such a huge force and really set the standards and pave the way for other corporations. In my heart I feel Disney will do the right thing and continue to make magical memories while still providing accommodations to special families. As for us, we take each day/moment as it comes and try not to sweat the small stuff! We see every day and milestone as a blessing and are thankful for those who don’t join the lynch mobs, take the time to educate themselves and fight for the rights of others.