I am a 42 year old mama of three kids: Coleman 17, Jack 16, Ava 12. I am also a wife, I am also tired. Why tired you may ask? Well…not only am I a busy mama, I am a business owner along with my husband Lee, of a farm market/homemade ice cream shop, but I am the mama of a child with Dravet Syndrome. Jack age 16 has Dravet. Most people have never heard of Dravet Syndrome-which I will refer to as DS or just Dravet in most cases, but thanks to social media, more & more individuals do know about the evil syndrome that has robbed our family of so much. Yes, we have seen blessings from Jack’s illness from the community & meeting different friends afflicted with Dravet or similar diagnosis, but people really have no clue what we have to deal with on a daily basis.
For those that do not know what DS is, let me give a quick run down of the main characteristics-will elaborate later on the symptoms as I continue to blog. The first symptom is seizures. When Jack’s seizures first started, he was literally having 100’s A DAY! The seizure types vary too. DS reared it’s ugly head at the precious age of 6 month for Jack, it typically shows up prior to the child’s first birthday & often after a series of immunizations. No, immunizations are not the enemy. Often vaccines can cause a slight fever in kids & it is the fever that brings out Dravet. Other side effects of DS are weakened immune system, severe behavior issues, speech impediment, bone issues, problems with eating, GI issues, sleep issues, & more.
I actually hate to write. I despise sitting down at a computer to type thoughts-always have. For some reason, I have felt drawn to start a blog about what we deal with daily. There is so much to talk about with DS. I will only touch on what gave me the nudge to be fully inspired to start this blog.
Last night, I took Coleman & Ava to see the movie Wonder. Wonder was a great movie that I highly recommend ALL (including children) watch. For those not familiar with Wonder, the story was about a little boy (Auggie) going to middle school for the first time (1st time for any type of school, was always homeschooled) born with severe facial deformities. Not only did the movie showcase how Auggie felt going to school, but it told the story of Auggie’s older high school aged sister (Via). This part of the movie is what gave me inspiration.
You see, Via felt ignored by her parents. Her parents dealt with so many surgeries & health issues with Auggie that she never wanted to give her parents anything to worry about. Much of her time was spent in her room or with her best friend, playing a low key role so that her parents could devote their time to their special son. Via was normal health-wise, but missed out on spending time with her parents that kids so critically need.
What a strong comparison! I often “wonder” if we are doing enough for our “normal” kids. So much time is spent tending to Jack that I beat myself up for missing out on soccer games, goat shows, getting the opportunity to spoil the kids with something special, or just hanging out with them. After watching Wonder, I asked myself, do Coleman & Ava feel neglected? I’m sure they do but I realize my husband & I are doing all we physically can to be in all the directions we are needed. Our hope is that Coleman & Ava will one day understand why we had to make some of the decisions we have & will make.
It’s so hard to create normalcy in a home that where so much chaos is created by one person. That chaos is Jack. Jack bounces off the walls, has severe sleep issues-he may go to sleep at 1am or 2am & wake at 6am & when he wakes, he is like a bull in a china shop! All day long he calls my name, is completely & utterly obsessed with various things & beings. Right now his obsession is Keith Urban. When I say he plays Keith’s new song Female at least 100 times a day, that’s what I mean! He blares the music, has zero reasoning skills, & the list goes on & on.
This may sound like a blog of complaining, it’s really not. I do know that we have HUGE blessings. I have a great support team from many, my husband, parents, other family members, & friends that reach out to us & most importantly pray for each us. BUT, I do love to wonder what three healthy children would feel like. I am truly thankful for my sense humor because without it, there would be NO way I could of gotten through this journey thus far.
Thank you for reading my first blog!