This post is part of the Epilepsy Blog Relay™ that will run from June 1 through June 30. Follow along and add comments to posts that inspire you!
This post is written by Rachel Ablondi, who lives in Mount Airy, Maryland with her husband Dave. They are parents to Andrew who lives with Lennox-Gastaut syndrome, Amelia, Ava and Jenna. Living Well With Epilepsy™ is grateful to Lundbeck, a Sponsor of the June 2016 Epilepsy Blog Relay™.
“Laughing, Loving, Kissing and Hugging….”
You don’t hear that so much from other dads, but you say these words quite a bit! You wouldn’t have expected such uplifting warm words to come from a tough guy dad whose son is diagnosed with cerebral palsy and a severe seizure disorder, named Lennox-Gastaut Syndrome. Early on when I was pregnant with our first child our dreams of our future with our kids played out much differently. You’ve told me your dreams involved father and son fishing trips, hiking trips to the mountains, baseball practice and games and all that kind of manly stuff. You grew up this way, and frankly neither of us knew life any other way, until the day Andrew was born.
Instead of dwelling on the “normal” child we lost, you focused on the perfect child that was now a part of our life. Andrew required extra care, but that didn’t stop you from focusing on bringing out Andrew’s smile and his laugh. Remember how you would bounce Andrew on our couch until he giggled out of control, and when you massaged his belly after his bath so he would gleefully yell, “EEEEEE!!” Hearing Andrew’s laugh and seeing him smile made all of his difficulties non-existent just for those moments in time. We all needed that. When Andrew was three we took hiking trips even though Andrew could not walk himself. I’ll never forget how you carried Andrew up the Jenny Lake Trail in the Grand Teton Mountains so that Andrew could feel the mountain air and see the tallest trees all for himself. Even though you were exhausted, what was important to you was that we were all together doing our favorite things no matter what obstacle was in our way. Not every dad takes his young son for walks, around and around, up and down hills in the neighborhood for hours just because his son liked the sensation to just keep on moving. Every summer there is no doubt that Andrew will be playing on the beach with his cousins. You wouldn’t have it any other way. You push that awkward wheelchair in the blazing sun through the deep sand just to get him there. Andrew may not play baseball, but you do make time for him to roll on his ball, one of his favorite things. Did you know you had such strength, did you know you had that kind of love inside for somebody else? You do, and you are the best dad.
Your dedication isn’t only to Andrew and our girls, but to me as well. You have given me the greatest support over these past 16 years. You are always available to listen and stand behind any decisions I make. For those scariest of times such as hospital stays when we are the most consumed with worry you hold down the fort at home so that I can be where I want to be, by Drew’s side. Our date nights are simple. They consist of hamburgers and a movie on a late Friday night, every single Friday night, and I wouldn’t have it any other way. We have made this time for each other because we know having this time helps us to be better parents. You make sure I have time away with my friends whether it is for a lunch date or a weekend getaway. I know taking care of four children by yourself is overwhelming, but you don’t complain.
Andrew’s daily seizures are our biggest worry. That worry is with us no matter where we are. I know it’s hard for you to grasp that religiously giving medicines several times a day have little to no impact on the daily seizures that are interfering with our son’s brain. It is so difficult to not be able to help Andrew, when he needs help the most. I know you wish there was more we could do to help him. I wish that too. You fix everything, but somehow we can’t stop Drew’s seizures. You don’t let the unpredictability of these diseases get in the way of the love you have for your family, especially for your son. That is to be commended.
Happy Father’s Day
Happy Father’s Day to you Dave, and also to all the great dads like you who put their child with special needs first. You are great dads, the best of them all. Here’s to even more laughing, loving, kissing and hugging!
NEXT UP: Be sure to check out the next post tomorrow on https://livingwellwithepilepsy.com for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET.