And just like that, the party is over

When Jack entered the hospital December 13, 2021 for what we thought was going to be a simple operation for g-tube placement, our lives quickly got turned upside down within hours when Jack was placed on a ventilator. Lee & I waited for days praying for a rapid change in Jack’s condition, when that didn’t happen, we were lost. The days turned into weeks, the weeks turned into months. We never would of guessed what was supposed to be a three day tops ordeal end up being three months! Richmond County (the county we reside in case you’re not familiar with), is small. It’s kind of like the sitcom Cheers where everybody knows your name. Our little town of Ellerbe has only one stoplight & we love that! Our county is full of loving, caring friends that would do anything for a neighbor. Where Jack was in the hospital, it’s not so little. Located in Chapel Hill, NC, it’s a major city that is surrounded by other major city’s. After nearly two weeks of Jack being at the hospital, Lee & I became the welcoming committee for UNC for Richmond County residents. Honest to goodness, it seemed like everyday there was a post on Facebook asking for prayers for a fellow friend who was at UNC, we would run into their families in the halls, the elevator, bumped into them in the cafeteria while they were passing the time while sitting with a loved one. With most of them, we developed a connection-it was hard not to. I would look forward to running into a familiar face most days because things were so isolating for us. That was also around the time we developed Covid, after my five day quarantine, I went back & then Lee was out for weeks leaving me up there alone a lot of time because of the severity of the last Covid wave. This is when I really anticipated seeing local friends. It’s amazing how little a big town can really be sometimes. We could relate with one another, understand the hurt & pain, distract the other with small talk, & pray for one another. There were many connections made.

A friend gave me a book while Jack was hospitalized that I have become to rely on, Red Sea Rules. One of the “rules” says that you are exactly where God wants you to be. That quote has been a strong reminder to me since reading it of how true that statement is. I chant it often. As bad as Jack’s illness was, I was reminded of this during his tenure & thankful to have had that lesson brought to me. People were so kind & caring during his sickness. Sending him wheelbarrows full of cards, stuffed animals, games, gift cards, and so many people & groups helped us with expenses. Since being home, the generosity of friends has continued. Lee & I eat lunch out frequently since it’s our only time together without interruptions. When we go to pay, we find out our tab has been paid often times. We are truly blessed to live in such a fine community surrounded by wonderful family & friends. I always say it, but I would not want to live anywhere else. So a big thank you to all who supported us in prayer, love, & gifts throughout Jack’s journey.

Unfortunately, not all that go through the doors of the hospital return home. Without going into specific details, this has been a hard pill to swallow given the closeness of our relationships. Knowing the intense & critical struggle Jack went through & many local friends who went through similar fights, we were all rooting for one another, we felt each other’s pain, but Jack came out on the other side. I have been so saddened that all were not as fortunate as Jack. The moments I have of guilt are strong as I think about those that didn’t make it, but I also know that was the fate of each. It has been a year ago to the day as I write this blog that Jack was in the hospital with pneumonia, we were there almost two weeks & I thought that was tough. Jack was very hard to deal with then once he got over the worse part of the pneumonia. He didn’t want the IV’s, oxygen in, didn’t want to take his medications, didn’t want to be in the hospital. He tried on multiple occasions yanking everything out. It took being hard on him telling him if he didn’t do what they wanted, he would die. That helped the situation. As I reflect back over the last year & a half of Jack’s life, I honestly think he had been sick for that long & we didn’t know it. The lack of eating, drinking & life is a big indicator for me. After receiving months of antibiotics, we pray he is healed from that nasty pneumonia.

Jack’s current status is great! He is still eating excellent! My last Mother’s Day was spent in the hospital with him, this years was way different. Jack got me his traditional gift he gives me-Pepsi, popcorn & Reese Cups. When I indulge, this is it. Coleman came in for the day with flowers, & Ava blessed me with the sweetest words any Mother could ask for. Everyday is a blessing & I am grateful for each. Anytime Jack sneezes or coughs, we get worried. His left lung when we left the hospital back in March still had damage, so we are always worried about him getting sick again & not being able to fight it off with two healthy lungs. I’ve enjoyed being able to take Jack to the dentist willingly, out to eat & to stores. He is much more obliging than ever, needs no prodding any more. He will walk up to us & randomly say “I love you”. Now his sleep is still aggravating as all get-out & he can be, too, but we have full & overflowing hearts so it kind of evens out.

Flowers Coleman got me.
Ava’s kind words.

As stated in many other blogs, I despise writing, always have. It takes up too much time & I have never been one to like anything pertaining to school-type stuff (and blogging is school-type stuff to me). It takes me a long time to write, mainly because I don’t have a lot of extra time. My extra time right now goes to making chocolate covered strawberries, bills, sorting papers, & the kids. Our whole house is nothing but boxes & papers, I’m about to go insane. When I wrote the above paragraphs, things were good. Ever been feeling really good & happy & then something horrible happens & you are down & out. This is when the party ended: Thursday, May 11, a few of our employees were having a really bad day, so Ava & I took them to eat after work. Always thinking about Jack & his need for takeout, I asked him what he wanted & of course the list was a mile long. I ordered the food, brought it in & the restaurant didn’t send the right food. Jack got angry, ran to his room, slams down the dog gate, & slams his door, too. This is when our bubble burst. Nothing & I mean nothing can bring us down like behavioral outbursts do, these outbursts affect me more than they do Lee. We thought we had that licked, but we were proven wrong. All the other stuff that Jack goes through is dealable, violence is not. I am now back to feeling jumpy at every little noise thinking it’s Jack getting violent. Back to not being on a cloud. Back to being nervous about leaving the house & him in the care of another. When he gets like this, I want to be a crazy person, but I can’t. I want to tell him how foolish he is being over food, storm into his room & be the warden, but I can’t. I have to be meek & mild so that a war will not start, pet him for acting ridiculous, we all must remain calm to avoid further, possibly more violent attacks. Not only is this a worry, Jack is now wanting the feeding tube out. He is pitching a fit for it to come out, which is why I hesitated in getting it to start with. It has become a problem. We haven’t used it at all since he has been home other than flushing it daily, but it was there as a backup should Jack get into a bad cycle of not eat and/or drinking.

This blog did a whole Jekyll & Hyde situation! Jack ended up apologizing which he usually does. Is that commendable, yes, but to me it doesn’t matter because the behaviors always continue even though I know technically he can not help this due to his medical condition. Dravet is the disease of all the diseases in my opinion. Every single cell, mechanism, thought, every single aspect of their lives & the people that care for them are affected. It’s the cruelest of the cruel. I know of no other disorder that robs patients of not being able to go to events, be active, or get excited all because of seizures and/or behavioral issues. My hopes & dreams on taking a family vacation this fall were crushed in 30 seconds after his outburst. Life will go on. It will be hard as it has always been, but we each are used to it. Our prayers that smooth sailing would be in our favor for once were not yet answered. I will just chant harder, “I am right where God wants me to be”.

One of my favorite songs I learned during my youth group days inspired the title of this blog, here’s a link if you’d like to listen.

Author: dravetsyndromeblog

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

2 thoughts on “And just like that, the party is over”

  1. Amy, you and Lee deserve some kind of an award for keeping up your business, your bank account and most of all the kids! Y’all are such a good example of how families should be! I love y’all!

    Liked by 1 person

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