I am back!

In recent weeks, I have not felt inspired to blog. Really, I have been torn & questioning whether I should blog ever again. Some people have messaged me inquiring about Jack’s condition & people asked me about him around town or at The Berry Patch. If you are new to my blogs or are not caught up on them all, then you missed the negative comments I was so unfortunate to have received about how someone thinks I am not doing my best with Jack as his parent. This person said I write terrible things about my son & that I need to let him experience things that other kids his age do. I know all of this is a lie. This person hurt me. Why did it hurt? It hurt because I know his or her comments were not true. I have tired everything in my power to get Jack help, therapies, multiple medical treatments in different states, natural therapies, the list goes on & on. He has been to Disney World three times. There are a lot of normal children that will never get to experience the magic of Disney even once! I may not be the best Mama, but I am a good one, this I know! I will not carry on about this hostile person any more, but I do want to thank the many, many family & friends that came to my defense. You all are my tribe & I appreciate each of you that offered to whoop some tail, offered caring words, & sent encouraging messages. Much love to all of you!

One person made me want to quit writing, now one person has inspired me to write again. I was really fine with never blogging again. As I have expressed before, I actually do not like to write & it hurts my wrists typing! I was always a horrible writer in school. I think it was mainly because I had to write on silly things in my opinion. I am a cut & dry person for the most part. If I had a job that had to have meetings, I would lose it. I would scream at all the ridiculous people asking foolish questions that were addressed in the beginning of the meeting or they should of already known the answer to. I was never good on going into detail about “who is your hero & why”-I could do that in a sentence or two, not wrote an essay on it or writing an essay on my interpretation on The Canterbury Tales. That stuff didn’t make sense to me, although I can still recite what I had to memorize in The Canterbury Tales even though it is all gibberish to me. I wanted to write about what I experienced-food, gymnastics, my Aunts that smoked cigarettes all night long while drinking pots of Sanka & discussing what was wrong with this world, or write about how I disliked brown paneled walls with brass-toned door knobs (sorry Mama). Never ever was I given one of those assignments to show off my writing skills. And coming up with a conclusion was & still is the hardest part of writing to me. Diagramming sentences gave me more horrific nightmares than long division-math was not fun either by the way. I was not a studious student, only in PE! Writing about personal experiences is totally organic for me now which is how I like it! I am thankful I don’t have to do outlines, make rough drafts (although I should), or any of that complicated such & such.

I am a member of several Dravet Facebook support groups. These support groups have helped me with Jack’s care on numerous occasions by asking questions to the forum & allowing someone in similar shoes that I am in with Jack reply with advice or help. Let me just say, if you suffer with an illness, find a Facebook support group, it can truly help. A few nights ago, a fellow Dravet Mama, which in our support groups the Mama’s on there are referred to as ‘Tiger Mama’s’ because of all the challenges we are forced to go through with our children, a Tiger Mama asked a question to the group about her son’s behavior. Her son acts very similarly to Jack although he is a little younger. She was wanting advice from fellow Mama’s that have been or are on the same behavioral journey as her son. As I have preached before, Dravet is more than just seizures. If behavioral issues were taken out of the equation, life would be much better, but in the same breath, seizures can cause behavior problems. I commented like many other Mama’s, giving a brief synopsis of life with Jack & I shared my blog with this concerned, deflated Mama to let her know she is not alone. The very next day, this Mama reached out personally to thank me for writing blogs about Jack. Her son shares some of the many issues Jack does. Her feelings are literally the same as mine, this Tiger Mama just hasn’t found anyone to write so honestly about the behavior issues before. My writings about Jack are not lies, they are 100% truthful, real, & things nightmares are made of. I will not apologize for being honest because through my honesty, it has helped another Mother. A Mother who is struggling with the same decisions our family is facing & living the same hardships we are going through. We have made a connection through my blogs. Although I can’t help her physically, I know that my experiences that I write about with Jack can help her feel like she is not alone.

Just to give y’all an update on what has been going on with Jack since my last blog as a ticked off Mama, things have calmed down significantly with Jack. His birthday tore him up, meaning he couldn’t eat, sleep, nor rest for thinking about his special day. He had a great time at Chuck E Cheese in Florence, SC. We had to go to SC because in NC we are still in phase 2 & our CC is closed. This particular CC was awesome. It worked out so perfectly, the first Sunday of each month is dedicated to children with special needs. The crowd was low, we had a personal helper, & Jack did not contract Corona (it’s been 14 days since him going-yay)! The personal helper he had was absolutely amazing by the way, so very accommodating & caring. There were several touch & go moments while we were there, there were multiple times that we thought Jack was going to have a seizure. In fact, on the way there, I saw him have several of what I call small seizures but are technically called myoclonic seizures. I also developed a migraine on the way to CC. It’s about an hour & a half drive there & 20 minutes into our trip, I noticed that I couldn’t see part of the road. I knew what was coming. I typically get an aura then the migraine hits. I took 5 ibuprofen & prayed that the headache would not get super bad & it didn’t-it was manageable. Once we arrived home, I was finally able to breathe a sigh of relief! Jack is back to not eating very much though. He is in an extremely calm demeanor right now that is so welcomed. I only wish that he could have both a calm demeanor & have an appetite at the same time. His nutritional needs are not being met. A lot of Dravet children have g-tubes but that would NOT fly with Jack. This would help us tremendously if he would agree to it, however, he will not. Ensures are out, he hates them, meds to ramp up his eating affect him negatively are out, so we just do the best we can.

Here I am at the hard part-the conclusion. In conclusion (lol, this is how all my school papers sounded). But really, in conclusion, you all will never know how much your prayers & concern for not only Jack but our entire family mean to us. You each (except for that hateful person with his or her negative comments) hold a special place in my heart. And to my new followers or even anyone I have helped with similar struggles as my own, thank you for sharing your words with me. We each can help one another with love, laughter, & most importantly, hope no matter what your problems are. Until next time….

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner. View all posts by dravetsyndromeblog