When Peace is the Missing Piece

How is it possible to be a faithful Christian when life is so very difficult is a question I ask myself often. I’ve asked myself a billion times in Jack’s 20 years on earth, how is it that so many people carry on wonderful lives of travel, happiness, joy, health, carefree living & the most important gift one can have, peace. I don’t understand why we aren’t able to obtain peace, I mean I feel like we are good people, I am mean (mainly because of a lack of sleep), but we don’t do harmful things to anyone & we try to help anyone that needs it. I’m not even slightly jealous of friends that hangout with other friends, go on nice trips, ride boats on the lake every beautiful weekend in the summer or even those that work only five days a week. All of that would be nice, it’s nothing I really care about at this point in my life, all I want is a healthy child & peace. Why Jack’s life has to be so full of suffering is beyond my thinking ability. It really does seem so unfair & unjust that Jack has to suffer everyday.

What does having an unwell child do to a person? I can’t speak for all, but I know there are commonalities, especially in the Dravet world. There is a huge adjustment in one of the most important daily routines of life-sleep. When Jack first started having seizures, he was only 6 months old. Coleman was 21 months old, Lee was a busy farmer & I was a 26 year old stay at home Mama. Though young, I was already sleep deprived from nursing Jack, then keeping up with a very energetic Coleman, then Jack began having seizures all day & night long which continued for many, many years. Then we had Ava & the sleep deprivation started all over. I wouldn’t take anything for those years, they are actually what helps me get through the lack of sleep now-they trained me! How I wish I liked coffee, can’t stand the taste of it at all, but I sure do need it. Can’t drink energy drinks either, so I am an au-naturale sleep-deprived fool!

Another thing that has changed in myself is a lack of empathy. People can get so bent out of shape about little things & I am continuously saying I wish I had only that to worry with. Admittedly, I have turned into a callous person. I don’t mean to be & I’m not sure when it exactly happened, just a buildup over time due to trauma. Is it a fight or flight response, I’m sure it is, I’m not so cold that I don’t care about people, I have a great big heart for those going through very difficult times be it medical or personal. It takes something major to get me to cry, not that I ever really cried to start with & I’m glad, the only makeup I wear is mascara & it would be a shame to ruin that as it is the only thing that makes my eyes appear open! I think most things are foolish that people carry on about, but when someone told me I had a dark shadow above my upper lip (aka a mustache)-that cut! The fun has been zapped right out of me. There’s not one desire I have to do anything extracurricular except when I was playing softball this fall & my heart wasn’t in it this time as it usually is. Any of the fun that is seen on my videos with Mama is pure force. If I’m out, it’s because I am forcing myself to not yet go home to my unhealthy son. Is this selfish? Yes it is, is it cold, yes it is. Is it needed, yes it is. I know if I go home directly from work, I will continue to work for Jack. Fetching this or that, him worrying me, being his one & only. I am straight up the only person Jack wants from the time I walk in the door until he goes to sleep at 1 or 2am. Jack’s disorder has also changed my whole love of doing things I once found joy in. Decorating our home for each season, now it’s summer pillows on the futon almost year-round & a Christmas tree only at best. Shopping, don’t care a thing about it, although I have to a lot of it for The Berry Patch, I find no pleasure in shopping for me. I use to sweep our porch several times a week, now it’s about twice a year. I used to love reading, wore out our local library, but I couldn’t tell you the last time I partook in reading for myself. The energy nor joy is there any longer. Some of the changes were rapid, others developed as Jack’s disorder worsened.

Self-care is yet another downfall of the special needs parent. My love for exercise was true! I was watching 1000lb Sisters the other night & the sisters brother Chris is trying to lose weight for gastric bypass so he is starting to exercise. The trainer he is working with asked him if he liked exercising, he said “No, they don’t nobody like exercising & if they do, they already skinny!” How right Chris was (I talk like him too)! As a youngster, I would wake up at the butt-crack of dawn on Saturday mornings to exercise with Richard Simmons, Jane Fonda & any other person I could find. When I took gymnastics, I stayed for the ladies workout after I had already whirled my way through the studio for two hours for my lessons. Then I got into walking & I could not miss my walks for nothing, until I did. Being healthy was always a top priority for me & now it is not because I don’t have the time nor desire. Life happened. It happened too fast, too crazy, & too plain brutal for us. Personal health nosedives when taking care of a loved one.

One of the most scary changes has been my memory. Sometimes I feel like I have early onset dementia & I am being totally serious. The things I forget are worrisome & the things I remember like so & so wanted a bushel of Dixie Lee peas or this person wanted a box of canning tomatoes, but it’s also comforting to know I may not have dementia if I can remember things like that. I do forget things like picking up Jack’s prescriptions of all things or calling the doctor. Inadequate sleep changes your way of thinking, reaction times, everything. Every relationship you had and/or have will falter including the ones in your home as a result of having a special needs child. Many will think you aren’t doing enough, some will think you’re too much of a helicopter parent, others just don’t care to be associated with you when they once were very active in your life. You get forgotten about, people no longer ask you to be a part of things & that’s understandable when we never could do things because of Jack’s condition. An old friend used to call me smiley a few years ago, can you believe that! There doesn’t seem to be much of that going on any more. I feel guilty doing anything for myself when Jack isn’t doing well, including laughing.

The type of stress we are under & Jack’s little body is in, is unbelievable. With him being in starvation mode currently, he is weak & depleted. Two weeks ago I started him on a medication that was supposed to help stimulate his appetite, but we ran into an issue that I am unable to say 100% what happened. He was lethargic upon waking that morning but not unusual when he is in a bad cycle. New med was given & he slept all day on & off. He had planned on going hunting with Lee that day but when Lee came to get him, he was too tired to go. Jack ended up calling me 30 minutes later demanding for Lee to come back home & get him, which he did. After getting to their destination, Jack slept the whole time. Lee had to carry Jack in the house because he wouldn’t wake up. Blaming this on the new medication, I swore I wouldn’t give this to him again-much like all the other stimulates, they all put him in a catatonic state. We are honestly between a rock & a hard place. I have never seen anything like this. I was by his side from 8pm-1pm into the next day, even slept with him. Jack developed a cough in his sleep shortly after I fed him some dumplings friend Nora Hudson made for him. He got strangled on them & I thought that was causing the cough. Later on he told me he didn’t feel good & Jack never complains. My first thought was he has developed pneumonia. It comes on quick with Jack & there has never been any warning that he had it. Jack is more prone to it due to several factors-epilepsy (aspirating), lack of moving around, & getting choked easily. I dug around & found an antibiotic & got it in him & his doctor called in one that morning. He slept & slept, into the late afternoon. When he was awake, he was in & out. Requested food but would only eat tiny bits & then start coughing. After a full 24 hours of antibiotics, he was better, but coughing up lots of phlegm. So very thankful for his doctor that listens & is so helpful. He did complete eating a whole bowl of soup after that rough 24 hour period. Honestly, I never know from day to day if he will end up in the hospital or not.

The trials Jack are going through currently are all because of Dravet & I have to wonder if it is from my pleas with God. Back when Jack’s behavior was so violent & we lived every moment in fear of him, I pled with God to take that away from him, the evilness that lived inside of him would rear its ugly head almost every single day. Our prayers were answered after several years, but with that came different types of worry & scariness-health changes & some violent streaks are still within but no where near what we were going through. We were & are in a damned if you do, damned if you don’t situation. The clinginess Jack exhibits towards me is exhausting. Moments alone to myself are a rarity. Moments spent with Lee alone are not to be had. We are on totally opposite sleep schedules. If I want to spend time with anyone including Lee & Ava, we have to do it after work at a store or a restaurant because if I go home, I am Jack’s. It is unhealthy to be someone else’s possession but I am & there is nothing we can do about it. He has no interest in anyone else in the house spending time with him. And not to mention the impact of having a special needs child with other children, they suffer. They are often pushed to the side & it seems to them they have been forgotten about.

I got a new car (new to me) two weeks ago & I have yet to open the door to it. We’ve been looking for a while now & had to get this one shipped in & also had to buy it before looking at it. When I woke the morning Lee got it, he said go look outside. I did, I wasn’t even excited. Haven’t driven it, nothing. I’m actually afraid to drive it with my luck. After hitting a dog a few weeks ago, I have extensive damage to the front of my Yukon, done on the same day Lee had it detailed-it was just about to be sold too. Berry luck is unlike any other luck in this world-not good! We have a new, young driver on our insurance now & I hit a deer last year, Lee hit one the previous year, & he reported some hail damage last year. We are probably going to get dropped from our insurance we’ve been told. Great! What the heck is insurance for? And now Ava has been involved in an accident. Someone ran a stop sign & her car got totaled, though not her fault & the person didn’t stop that made the error. We just got her another car yesterday. This will make three newish cars purchased in a month! Who other than a Berry does that! Not only all of this, but someone tried to steal Lee’s tractors (yes tractors with an s) on Thanksgiving night. I’m so sick of people. A few years ago, Lee hit a bear, now who else in our county can say that?

Friends of mine/customers step-daughter was injured while she was running when a car struck her. She has been in the hospital for over two months now & has a long recovery ahead of her. Our customers husband said it best, a parent is no happier than their saddest child. That statement certainly holds true for us & if you are a parent, you know those words are 100% factual. If y’all can continue to keep Jack & us in your prayers a little more extra, we would surely appreciate that. This too shall pass is a favorite saying of mine, I surely pray that this feeling that we are in & Jack’s mode of health changes all for the better very soon. The single most valuable lesson I have learned with having a special needs child is how very precious peace is. Having a sick child makes you realize that nothing materialistic, any feuding you have in your life or drama are of any relevance at all. Peace is what I crave the most & I can’t obtain it. I need prayers to help me accept this life. Rationale brain knows that I have done every single thing possible to care for Jack, non-rationale brain says I haven’t done enough & can do more. I am haunted by the fact that Jack is not doing well. I know I have done for Jack all that he will allow. I still keep trying, aiming for other alternatives & treatments, but am exhausted both mentally & physically. If I were a lady of the 90’s & newspaper ads were still a thing, I would run a newspaper ad saying:

Married woman, late 40’s seeks peace from a crazy, hectic, sleepless life. Any Sugar Daddy’s available??? If you are willing to enjoy delicious, home cooked meals by a 1/2 nutty Mama & in turn stay up for third shift with son, you are hired!

Not really…but maybe (y’all don’t tell Lee)!😂😂

Author: dravetsyndromeblog

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

5 thoughts on “When Peace is the Missing Piece”

  1. I hear you and continue to keep you all in my prayers….I have felt and had the same feelings….for us, it did get better with age…Noah now 38…but with DS….we just keep on, keeping on….and you will too….

    Liked by 1 person

  2. Oh, Amy. So much of what you said resonates with me. D becomes my appendage especially when not feeling well, and without a caregiver, it is constant. Peace seems elusive. Y’all are in my prayers daily!

    On Tue, Dec 7, 2021 at 10:27 PM Cruel & Unusual Circumstances wrote:

    > dravetsyndromeblog posted: ” How is it possible to be a faithful Christian > when life is so very difficult is a question I ask myself often. I’ve asked > myself a billion times in Jack’s 20 years on earth, how is it that so many > people carry on wonderful lives of travel, happiness, jo” >

    Liked by 1 person

  3. Robbie (Debbie’s son that I raised) is bi-polar. Even though not living with me now, I am still looking for signs of extreme lows or highs. I worried him and myself about making sure he got his medical insurance straighten out and worried if he would be able to afford it. He informs me at 24 he has it handled. I know he is right but there is still that part of me that fights with myself , you have done all the right things, have given all the right/best guidance , have I done enough. Even 2 states and 500 miles does not stop the worry and concern, have I harped on it enough that medication is going to be for life, have I given him enough warning signs to look for. The biggest problem is when a bi-polar is on a high they feel so good that they do not to take meds, which in turn leads to a very low where, there is the thoughts of no way out.
    Peace? no not sure there is ever more then a glimmer, every once in a while. Robbie and Jack have a life time medical condition, good /bad days. great /horrible days. I have had people say “you need to remove yourself a little, do YOU things”. My mind and heart keeps saying “God gave me this child to care for, I have to make sure I have done everything I can do”. A thought that sustains me “God has a purpose for this child life” and as usual God does not tell me his plan. Is he destined for greatness? a light that gives others hope? Is our interaction the example that someone else needs? Peace? still not sure but Joy, love, comfort maybe those moments were fleeting but they were there for a period of time and maybe peace will be in the future when God say ” welcome my faithful servant” .prayers, hugs and admiration. For what it is worth, I think you are doing a great job.

    Liked by 1 person

  4. I’m so with you on so many levels. Our kids struggle unimaginably and I pray the we all get some sort of hope and relief for the future. Taylor has different struggles from Jack but I am the constant in her life. They are their worst enemy. There has to be something out there that can help but there are so many things that make things worse. I too do not like the person that Dravet has turned me into, callous, unemotional and little empathy for others. I do want to enjoy the good things that life has to offer. And for Taylor to enjoy her life too. Right now she will not allow any Christmas decorations in our house. I want to give up but I can’t. Know that you are not alone in this battle.

    Liked by 1 person

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