So here we are now, during the past 5 years, our family has experienced "the unknown", sadness, joys, and happiness. There was a time that I never thought I'd be able to feel pure joy. When Isabella was born, just 7 weeks shy of the 1-year mark of Dylan's death, I was overcome with joy. Then when Sophia was born in 2013, once again that magical feeling of joy was felt. Joy has slowly found a way back into our life on a more regular basis.
Over the years, as our family hears motorcycles go by, we smile and sometimes laugh. I can still hear Dylan laughing. It's as if he's here with us sometimes. It's the little things that I miss the most. He would literally bust up laughing. Were his senses overstimulated or did he really think it was the funny sound ever? I'm going with the second one!
As we approach, the 10-year anniversary of his unexpected death, I am filled will all kinds of emotions. Sometimes I'm numb. Sometimes I'm angry. Sometimes I'm sad. This past Saturday was a tough one. I made a post on Facebook about grief and how heavy I was feeling it. Grief has often been compared to "waves". The rushing feeling coming in and crashing against you. Sometimes it knocks you down or pulls you under no matter how hard you try to stand. Last year while in Maui, I tried to bury my feet in the sand and let the waves crash against me and tried to stay standing. Others have done that right?? I tried to "control" my surroundings; like I could really control a crashing wave. There were times I stood tall, others where I fell backwards and others when I got caught in the waves. That's how it is with grief. Sometimes I can stand tall and keep moving. Other times, I'm knocked down and found rolling through all kinds of emotions. Ranging from sadness, angry, disappointment, regret, and guilt. A friend shared this pic with me; it sums up grief really well I think.
When Dylan died, I remember that sometime during those first few months I told Kalen that I wanted to have a race to benefit The Epilepsy Foundation and honor Dylan when 10 years came around. It's amazes me how fast 10 years came. It wasn't going to be a "big" race with lots of sponsors, official timers, race bibs, or live music. If I was lucky, I would have had race shirts made/donated and had family and friends participate in it. While I was struggling yesterday, the thought came to me that maybe, just maybe we could pull a virtual 5k run/walk off. There are no race shirts but people are participating to remember and honor Dylan. My friend, Hannah, helped me come up with the hashtag - #5kfordylan2020 (search for it on Instagram and Facebook). So, if you want to participate, we'd love to see your posts. Make sure to use that hashtag or tag me if we are friends on social media. The outpouring of love and support since I posted about the run has been amazing. THANK YOU!! To see Dylan's sweet face on Instagram or Facebook has been so touching. For me one of the things I've wanted most since Dylan died, is that he is remembered. That people knew he existed, how special he is and how loved he is.
Dylan died from #sudep. Maybe you've heard of it but my guess is you most likely haven't. One of the goals our family has as we approach the 10-year mark, is that others can get the help and support to understand seizures better and find a cure. It would be an honor to have people donate in Dylan's memory to the The Epilepsy Foundation. Dylan was on seizure medicine when he passed away. We were transitioning him to a different medicine because the one he was on wasn't effective for him. His seizures weren't as controlled as we had hoped. We tried so many different meds for Dylan's seizures. Some worked great but lost their effectiveness. Others had horrible side effects. There was a period of time that Dylan screamed pretty much around the clock, because his liver was inflamed and no lab work was testing for it. Those were some really tough months. Ironically, in March of 2010, just 2 months before he died, he had a colonoscopy and endoscopy. That's what started the process of the medicine change. I can still see Dylan's smiling face while he was about to go to anesthesia for the previous procedures. He was so loopy from the pre-meds.
I wanted to give a HUGE thank you shout out to those of you that have donated to The Epilepsy Foundation in honor of Dylan. It truly means so much. And to those of that have committed to run or walk in honor of Dylan this week, thank you. Thank you for taking the time to remember a 6 year, 10 months and 4-day old little boy. Thank you for the love and support throughout the past 10 years.
Here's hoping that I can survive this week in one piece. Between Dylan's upcoming angel day, my mom's chemotherapy and everyday life, I have a feeling it's going to be one very long and emotional week. Trying to stay positive but it's super hard.
So, until next blog post, hang on tight and make sure you have a life jacket because you never know what's coming your way.
