Memories…they are either good or bad, usually there is no in between. They stick out because they were memorable in a fun, comforting, or difficult time. Facebook is good at reminding you of memories. If we are lucky, we have a ton of good memories. I can’t say that I have a lot of good memories with Jack, most of the times I remember quite vividly are times of emergency & I’m sure that holds true for Lee, Coleman, & Ava as well. Siblings typically get into trouble together, are close, & have good times to reminisce on. This is not true for our kids & that is sad for me as a Mama. They spend their time when around Jack trying to get away from him, rightfully so. Their memories are much like mine when it comes to Jack; emergencies, interruptions of celebrations due to seizures, violence, & not being able to go to functions because of health/behavioral needs. Coleman & Jack are only 15 months apart, pretty much Coleman’s toddler-teen years are flooded with memories of hospitalizations & acute medical care (he’s at NC State now, bet there are tons of memories Mama don’t know about). Coleman was very protective & caring for Jack when they were small. He worried a lot about Jack, but as Jack got older, Coleman’s views changed about Jack when he got older. Ava & Jack are 4 years apart, Coleman is 5 years older than Ava. Coleman spent a lot of time with my parents due to hospitalizations, days of nothing but seizing, then Ava being a newborn & Jack having so many medical needs at home. Coleman was extremely active, I had to nearly hog tie him to get him to sleep or nap. My Mama called me the warden. No one could get Coleman to have his bottle but me, no one could get him to sleep but me. Needless to say, my parents were wore slam out when Coleman stayed, they loved it though!

There were great times that I treasure more than anything, like the times we were able to play outside all day & into dusk without an emergency, the afternoon naps with both boys cuddled on each side of me, reading every night to all three kids was one of my favorite memories. I received a memory recall a few days ago from Facebook. Pictured below is the memory that tugged at my heart, was the inspiration for this blog, & made me long for these times once again. Jack & Ava had a close relationship when Ava was smaller. She was home more often because Coleman was in school (Jack went to a 1/2 day program), she became my little helper. She fetched different things Jack needed or for myself to help with his medical situations, she became Jack’s little nurse, empathized with him, they watched the same cartoons, played together. They truly enjoyed the company of one another. Coleman never, ever watched tv so there was no connection found through tv. This is the sweetest picture & really shows the bond these two once had. Jack & Ava were still dressed in their school uniforms & were playing rock, paper, scissors. How I wish for these days again! Although the times were not easy, the stress level was the same as present day, but Jack was smaller & we could contain him somewhat better than we can now if he does get violent. He was also much sweeter than he is now, but aren’t all kids that way? All of our children were once sweet, angelic angels, now, mine are mean, hateful teens! The smiles in this picture are so bright, the one that touches me so is Ava’s. She was actually able to spend meaningful time with her brother. Ava probably doesn’t remember this, I didn’t either frankly, the good memories replaced with bad ones. While a handful are so dismissive of Facebook, I am thankful for it. It allowed me to store memories of good times without having to tear everything out of my newly organized attic to find these sweet treasures. I would of had to climb over 10 years of tax receipts, Christmas trees, & Easter wreaths just to see these two interacting. Through Facebook, I saw it just by checking Facebook. I thank you, Mark Zuckerberg!

It was such a nice spring day this week without any rain on this particular day (can you believe it?). I went outside to enjoy the morning while I waited on Jack’s caretaker, Jack joined me outside on the front porch. We live in town on a busy road, a lot of people walk for exercise or because they don’t have a car, there is always someone walking by our house. Jack bebop’s on the porch with me dressed in a tshirt, underwear, & a toboggan only, it made no never mind to him if anyone saw him in his undies or not. Most teens would of been mortified! He has even greeted the UPS man in this same attire!

Speaking of memories, I think all of you that keep up with my blogs understand somewhat how very stressful our lives have been & are. This is a funny story about being sleep deprived when the boys were babies. I was already tired from having an extremely active 15 month old (Coleman) when Jack arrived. Coleman started walking towards the end of being 9 months old & was never interested in any toy in this world or anything babies & toddlers typically love. He took apart everything, even asked for drop cords for Christmas when he was 3! As soon as Jack emerged, his health issues began. He was whisked away to the NICU soon after birth due to a heart condition called Wolff-Parkinson-White Syndrome (WPW which has since been resolved with a cardiac ablation at the age of 4). This diagnosis was before the seizures started. Of course we were terrified. WPW can cause the heart to go into SVT which means a super duper fast heart rate in layman’s terms. His was discovered a few hours after birth with a heart rate of 250. Jack was placed on a beta blocker at birth & we were sent home about five days later. I was tired, I was spent! Being pregnant, no problem-I was made to have babies, I never once was sick with any of them. Having babies, no problem. Sleep depravity, Houston, we have a problem! Coleman was not a great sleeper at any age, still isn’t. Jack nursed plus he had what we considered (little did we know) a huge heart problem so he slept with us, plus, he was newborn. The doctor sent us home with Jack’s heart medication that had to be given every 8 hours. This may sound reasonable to you, it was not to us as newer parents of a new baby with a heart condition we had never dealt with & it could be life threatening. The 8 hour schedule the nurses put Jack on for his medication was fitting for them, there is always a nurse on staff, awake, & ready to hand out medication. At home, we thought we had to give the meds every 8 hours exactly to the nurses schedule, I think it was roughly 2am, 10am, 6pm. We were waking Jack up at 2am if he wasn’t already awake for feeding. We were so scared Jack’s heart rate was going to go through the roof & us not detect it that I watched him all the time when I wasn’t nodding off. Like any toddler, Coleman woke up bright eyed & bushy tailed at 6:00am, by this time, Lee was long gone. So it was me with two babies basically & one severely sleep deprived Mama. One night, Jack woke up to nurse earlier than 2am which was the time his medication was due. I told Lee after Jack was done nursing to go find Jack so we could give him his medicine. Lee walked all over the house trying to find this newborn baby who obviously couldn’t walk or do anything for himself. Lee comes back & says he can’t find him. We panic! After a few moments, it dawned on me that I was holding Jack the entire time! That is how very tired we both were! We were so tired that we didn’t even know I was holding the very baby we were looking for! Makes me laugh every time I think about it. Shortly thereafter, we met with Jack’s electrophysiologist cardiologist at Duke & he advised us on how to get away from the middle of the night medicine dose. We learned to adapt to a a very scary heart diagnosis.

Most people that have WPW don’t have symptoms & don’t discover it until an EKG for an upcoming surgery. I remember Jack having a really fast heartbeat in utero, but by the time the ultrasound tech got to me, it had gone back to regular rhythm-it was forgotten about afterwards. Jack also had it immediately after birth & then again during one of the nightly routine newborn checks, that’s when the nurses knew something wasn’t right when Jack’s heart rate was too fast to count. Later on in Jack’s young life at the age of 6 was when we found out about him having Dravet, which was connected to the WPW Syndrome he had. Both are mutations of the sodium channel gene (which is why Jack has Dravet & had WPW), a lot of Dravet kids have heart issues. A lot of the regular population have heart issues & don’t know about it until it’s too late. Just with hearing screening in newborns, I would love to see cardiac screening as well. It is not an invasive procedure to perform an EKG, the biggest feat would be getting the baby to lie still. I think this should be mandatory with all infants, it could prevent unnecessary deaths with one simple, easy, fast test.

Memories are a good thing, usually. Certain smells can take you back to being four years old sitting at your Grandma’s kitchen table waiting on cookies, a particular sound could dredge up the memory of an impromptu beach trip, or the thought of visiting someone at the hospital could bring back a flood of bad memories over the loss of a loved one. Even if the memories aren’t always pleasant, in some cases, we are fortunate to have them rather than not. They are necessary life experiences that give us the tools to cope, deal, & get through life’s adversities.

Some of my other favorite memories of years past of the kids: This is of Coleman with the biggest smile I’ve ever seen from him at Disney on Thunder Mountain roller coaster.

Another favorite of mine is of Jack on the same ride at Disney, his smile was infectious.

And this one of Ava, she is so hot, mad, & tired during one of her goat shows. She was so done with it all she decided to relax with a grape Nehi & give me an eye roll!

And this one of Mama, Daddy, Ava, & my sister Jodie at The Cheesecake Factory in Raleigh. Coleman had a fit to go there, he’s always loved that place. We hate going because the wait is typically so long. We were all mad, we are hungry people & don’t like waiting for food!

Go out & make some memories & take pictures, you won’t be sorry!

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner.

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