Pray, try, cry, repeat

It’s been a while since I last blogged about the goings-on’s with Jack. The last time I wrote, I talked about how Jack was in a particularly worrisome state, sleeping most of the day & night, not eating, drinking, nor taking his medications regularly. It truly was a very scary, dark time for us because we didn’t know what to expect from day to day. The very fact that Jack didn’t receive medical intervention is an absolute miracle. He would never willingly seek medical treatment, it would have to be a forced situation & that could get very ugly-very quickly. Several years ago, Jack became combative when Lee tried to urge Jack to shower after not having stepped in a shower in nearly two months. Jack went ballistic by tearing down everything in his room & then started an altercation with Lee. After 30 minutes of trying to get Jack to calm down, we had to call 911 for medical help. Because Jack was tied down & unable to be unrestrained, the attempted attacks went on all night long & into the early morning hours until he had worn himself out. The multiple emergency medications didn’t even touch him. Plus, they caused a life-threatening and what could of been a life-altering response a whole day later as a result of one of his seizure meds not mixing well with the emergency medication, but it had to be done because he was so forceful & full of rage. All because of a shower we spent days in the kids intensive care unit & several on the pediatric floor at Chapel Hill. We went racing up the road in an ambulance that night with nothing packed at all since we were in such an emergent state. And to top things off, I started my period once we got there & had to ask a male nurse for products since the durn gift shop was closed! Periods always come at the most inopportune times-if you’re a male or my child, sorry that I just made you uncomfortable! You’ve not lived until you have taken a shower in an intensive care unit facility. The shower was for anyone staying there so it was a shared shower, “ugh” is all I can say. I had no flip flops to shower in so I wouldn’t get plantar warts or athletes foot which I didn’t, terrible, awful shampoo & conditioner because my options where limited & my hair was so knotty, had to get right back into my day clothes & we all know that trying to put a bra on a damp body is worse than trying to put on jeans that are two sizes too small. Not to mention the shower was in a scary hall, but I didn’t care, I experienced silence those ten minutes, no beeping monitors, no IV getting kinks, no one opening the door to do a new assessment. So now, we suggest a shower instead of urging. If he says no, we don’t revisit the subject or push it on showering or anything else. Thank goodness he’s a cold-natured fella & doesn’t sweat! The point of this whole story is to explain why we won’t use forced medical intervention unless absolutely necessary.

My last post was also about dealing with some bits of depression. What a struggle it is to see your child fight to live each day. Now Jack doesn’t know that is what he is doing because of his mental disability, but we know. Finding the courage to go out into the world each day takes a lot out of me. It would be so easy to do if we didn’t have a business. A business that depends on me each day. Most everyday I leave the house, Jack is still asleep. A year ago & even into early last year, I would never leave the house until he woke up. Then, he woke at normal teen hours & would be wild as a bull in a china shop. He would try to pull my clothes off, aggravate every nerve in my body from putting a wet, dirty mop on my head to hitting me. It was like being tortured by the most misbehaved kid in third grade times 1,000. As Jack grew & his strength grew, the threat of violence on his part became something I was fearful of day in & day out. Fearing my child was not anything I ever thought I would encounter with my kids. As Jack’s needs changed medically, his demeanor has changed, basically he hasn’t had the energy to get out of bed since January.

During this change in Jack, lent was growing closer. Having never participated in lent, I began to wonder what I could do to grow in my relationship with God. How could I show God my devotion to Him? The answer was simple & one that most of us could do without, social media. At night, I would often get on Facebook & scroll aimlessly for hours when I couldn’t sleep. For lent, I decided to go off social media from 10pm-10am everyday, I also decided to give up Pepsi. I never drank them a lot, but they were definitely a special vice when I was struggling even if it was only a 1/2 can, I savored it. Now 10-10 off social media doesn’t sound like anything, but it is to me. It allows me to read my Bible every night, that time is carved out for me, something that I wasn’t doing & any downtime I had to be spent with God had been replaced with social media. I would go off of it completely if we didn’t have a business.

My whole life, I have wanted a worn Bible, worn from reading the word of God, & worn for learning how to apply the word of God to different life situations. I’ve tried to read the Bible many times, I honestly could not grasp it. I sat in church unable to relate to stories in the Bible often times because I had not completed the book. Before lent, I dug out Joyce Meyer’s most helpful book pictured below. If you have struggled reading the Bible yourself, I highly suggest this Bible, it has helped me understand everything that I am reading. I have become fascinated by God’s word. There is so much in only the few completed chapters I have read that relate to my life. The Bible is so much better than any novel I will ever read or have read.

Moving forward, Jack is again not doing well. His neurologist is working on getting a healthcare team to come into the home to help with needs that he refuses to go to the doctor or hospital for. Needs like hydration therapy, Jack doesn’t drink hardly anything at all. I think if he could get that, he would feel so much better & more energized. Also to do labs if needed & they are needed. And possibly be seen by a physician when the need arises. I was contacted by hospice today about his needs, which is a hard pill to swallow. I know he isn’t in dire straits yet, but to even have that associated with Jack, has brought me down to a new low. Now I don’t know that hospice is the right fit for Jack, maybe home health care is best, not sure at this point. We are looking into different options. Jack has little to no desire to do anything now. I successfully weaned him off of one of his behavior meds. I was hoping that it would of made a positive impact on his health, appetite, & lack of energy but all has remained the same. But I am thankful that it’s one less pill he has to swallow. This whole paragraph is the reason why my shirt is wet, wet from tears. Most days, Jack doesn’t wake until 2:30 or 3pm, sometimes naps a few times throughout the day & evening even after sleeping so long, gets up to pee once a day & then right back to bed. He’s not on his phone any more, not playing games or watching tv. The sad part of it is, I have to go to work everyday, do errands, & life. When I leave the house each day & he’s still asleep, a bit more of my heart breaks. I check my phone constantly for news from his caretaker to see if he’s up yet, has he taken his meds, what’s his mood like. It would be so easy to crawl in bed with him & just hold him & not leave his side. Throughout all the violence, meeting strangers online, being catfished, food demands from all over totaling sometimes $100 worth, the attitude, & having us buy gift cards for the catfishers, that Jack has done, I never wanted to see him get low like this. The spans of lows are longer lasting than they used to be which I’m told is a Dravet thing. He is resilient if nothing else.

As I dry my tears from my face & shirt, I look to God for relief & answers. I pray for Jack to be reenergized constantly. I am reminded of different biblical beings hardships. I try to remind myself that Jack does this often, that he is going to be okay. Then I cry again. Pray, try, cry repeat.

Author: dravetsyndromeblog

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