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!
Cruel & Unusual Circumstances 
Very well written. I admire your strength and from what I see you are doing a fantastic job with all of your many titles. I look forward to following your blog. 😊
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Thank you, Sandra! Just hope you get time to read future blogs with your busy season cranking up!
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Love this!!
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Thank you, Ella. Are you a Dravet mom?
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Love the blog Amy!
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Thank you so much, very nervous about starting it, but people need to know what we go through!
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Congratulations on starting your own blog and I look forward to keeping up with the very busy Berry’s! I had no idea of the daily struggles that go along with Dravet Syndrome and it was a real eye opener reading about it. So glad your starting this and don’t forget to also be working on your book!!
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Only if you will be my ghost writer!
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You may not like to write, but you do it Beautifully. I “Wonder” how in the world you do it all. I look forward to reading more, and will be Praying for you and your family as you continue your “Wonderful” life..
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That’s so sweet, Carol.
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I absolutely loved this. You have inspired me to want to write again. I use to keep my thoughts in a journal. This is wonderful! Prayers for Jack and your family.
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Thank you!
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Love it Lady.
Everyone’s journey is a gift from God.
Can’t wait to read more.
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Thank you!
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You did a great job writing this Amy. I’m glad you decided to write this blog. I remember the first article in the Daily Journal about Jack and the family struggles with his condition.
You are a strong woman, funny, talented and a good mother. Pat Mills raised two wonderful daughters and I know she is very proud of you.
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Thank you, Annie! I enjoy you & your family immensely! ❤️♥️
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Love your first blog! You are an amazing lady! I realize your struggle is real and scary. I pray for you and your sweet family. From the outside you all look amazingly together. “I Wonder” how you do it all. Y’all have always had a special place in my heart. Question – are you homeschooling Jack?
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Hey friend! Yes, Jack is homeschooled. Thank you for your kindness! ❤️
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Enjoyed the blog, one day maybe you should write a book. I admire the way you and Lee handle the life y’all have been given. Thankful that I have gotten to know you and all the family, y’all are special people and glad to call y’all friends.
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I’ve often thought of writing a book but it really seems like too much work! Maybe someone will pay me for writing these blogs lol.
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This is an amazing idea!! You rock Amy!!! You are such a beautiful inspiration and your husband and kids are so lucky to have you! I can’t wait to read your next one!!! Oh, and tell Jack he has AWESOME taste!! Love you! ❤️
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That’s very kind of you, Heather. He does have good taste, but just plays it too often lol.
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Thank you for introducing your family to those of us who stop at The Strawberry regularly for ice cream and produce. Also for educationing us about your son’s medical condition. We were at The Strawberry yesterday for ice cream on our way home from the beach. Prayers for you and your family.
Alicia
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I hate I missed you, Alicia…maybe one day you can introduce yourself. Hope you enjoy the blog!
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Amazing blog!!! You will definitely receive blessings, as well as be a blessing, in expressing yourself through your blogs. You are an awesome Mama and I admire your strength and courage everyday! When you are feeling overwhelmed remember this Bible verse:
1 Peter 5:7 Cast all your anxiety on Him because He cares for you.
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Thanks, Shelly! You’ve seen it from the beginning…maybe you should do an excerpt one day!
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Amy,
You and Lee are awesome parents and such a true blessing to not only your family but the community as well . Thank you for all you do daily Your strength is amazing I hope your family has a wonderful holiday season
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It has always been a blessing knowing you, Cindy! Thank you for your kind words.
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Love it. I often think about this aspect of y’alls lives when I go by the stand. I know people see the outside and don’t know y’all personally and all those issues. I enjoyed the read. Keep it up!
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I thank you for your response & glad you enjoyed the read. Best!
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I happened upon your blog when a friend shared it on FB. I quickly noticed that big berry in the background! My family has come to know and love that big berry on our many trips traveling from VA to my hometown in NC! My son knows that exit 25 will get him the best blue vanilla ice cream that any little boy could dream of! We’ve unknowingly supported your family for quite some time, but I feel a connection to you now! I’m sure we will make a stop soon (like, probably this weekend), and I’ll be reminded to pray for such a wonderful family!!
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Thanks, Jessi! And thank you “berry” much for being a customer. Such a sweet response, hope to see you soon!
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Great job Amy!! You inspire me always..growing up with parents who owned a business was hard enough, I can’t imagine having a sibling with special needs too. Trust me when Ava and Coleman become parents they will fully understand and appreciate what you all have and will do!
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I appreciate you so much, thank you!
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I’m so excited you are doing this not only to raise awareness for Jack’s condition but also so I can keep up with your family now that I’m far away. Can’t wait to keep reading your posts!
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Thank you, we miss you so much!
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Excellent Amy! I’m so glad you’re doing this! I think writing this blog is going to be a great creative outlet for you! Great job!
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Thank you!
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I enjoyed reading your blog! You must be an awesome mom and wife! Remember you are only one person and you can only do so much. Dealing with a special needs child I’m sure is quite a challenge. I’m sure you love all your children the same and I’m sure that Coleman and Ava understand that Jack needs most of your time and attention. Don’t beat yourself up thinking that you are cheating them out of your attention. Keep up the good work with your family and I pray that your life gets easier! I think that Jack might have been in my grandsons preschool class. My grandson is Cooper Godfrey!
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Yes they were, thank you for your encouraging, kind words. My sister, Jodie Mills used to date Mark. Small world!
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Thank you for leading me to your blog…I often wonder about those same issues. Do the other children receive as much attention as they need. I’ve come to the conclusion as you have that we just try to do our best and try to remember them as well in different situations. And I hope to foster an atmosphere where they are free to let their emotions out even and learn to give straight feedback and I have to learn to take it without getting in a huff. It is after all their genuine experience. None of us are superhuman even if we try to be. Hugs to you ❤️
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Great feedback, all we can do is try our best.
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Parenting a special needs kid is tough. My heart goes out to you, your son, and your entire family.
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I had so many thoughts while reading this post. Like, how my sister’s disability is different from your son’s and how that impacts the sibling dynamic differently. I am one of those people who have never heard of DS. Thank you for explaining it more and making the clarification about the vaccaines because I would definitely have been wondering about a possible causation. Great post! Thank you for sharing some of your son with us!
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