No Life to Live

Lee & I were recently talking about timing. Timing is an amazing thing, I find it very intriguing, fascinating even. Some examples of how I think timing is perfect are how home chefs have a whole meal ready & put together all at once, it just magically comes together. Or how when I throw a ball to either first base or third base, that’s exactly where it goes-the ball mystically falls into the glove of the opposite person. Another strange example of unique timing, is how you think about seeing someone you haven’t seen in a while & boom, there they appear.

Speaking of time, Jack’s birthday is coming up Sunday, August 2 to be exact. He’s going to be 19! It is truly hard to believe we have been riding this roller coaster with him for 19 years. The “Cyclone” coaster launched on exactly August 2, 2001 & has not let up yet. Normally, birthdays in our family are celebrated at a restaurant of his or her choosing, gifts, cake, & family & friends would be in attendance. This is not an option with Jack, sadly. I call Jack the event upsetter. Part of having Dravet Syndrome is not being able to handle stress of any kind, whether it’s distress or eustress (meaning happy stress). At nearly every birthday celebration as low-key as ours our, he has seized. Not only at his own birthday party, but others whether family or friends. Countless upon countless times, we have attended friends parties, VBS, family gatherings, games, etc & he seizes every single time. This is one of the reasons why we don’t take him anywhere really. He is far too big now to have to transport after a seizure to take to these places & the risk of him getting seriously injured from a fall from the seizure itself is too great.

I find myself questioning our Creator constantly, though only when Jack is intolerable which is most of the time. I talk to God frequently & ask Him why we have to be tortured day in & day out? What I hear back from God is, “let him go”. Meaning, place Jack in a residential facility. Is this torture a daily reminder of God’s message to me? Maybe. It’s not that I haven’t looked for a home for Jack, it’s only that one has not presented itself to me in a manner that would be fitting for Jack’s needs. I do BELIEVE placement is the very best option for our family, I am not going against God’s message-I am waiting for the right place for most of his needs to be met. In the meantime, I still unfortunately continue to question God on the why’s of the absolute torture chamber Jack puts us through. He is relentless in his forms of punishment upon us. Jack would be a wonderful weapon on his own to torture criminals for information. He would have Jeffery Epstein & Ghislaine Maxwell talking in a matter of minutes. All they would have to do is wait for Jack to wake up in the mornings & they would confess all just for Jack to leave them alone. I scream silently in my head all the time when I’m home with Jack, I roll my eyes every time he calls my cell phone when I’m away because I know there is a foolish demand on the other end, I say bad things that my head only hears when he is acting up which is pretty much all the time. This is no life to live (no life to live-good name for a soap opera).

We have a big beautiful pool that none of us can enjoy. If we swim, we close all the blinds, his door, & have to remain as quite as possible. Swimming with Jack would kill Michael Phelps, Jack runs around that pool like a chicken with his head cut off. Most of the time, it’s not even worth the effort of preparing to swim. He wears you down. Jack started well over a month ago on his birthday planning. He is obsessed with Roy Cooper & his lack of opening up the state of North Carolina, it has made Jack very irritable, at times almost violent. He always celebrates his birthday at what I refer to as Chuck E Hell & we always go to the one on Greensboro, NC. When Jack learned the ones in NC were not opening up because of Corona, he lost it. I was prepared for it & came up with the solution of visiting the one in Florence, SC since their state is a little more relaxed than ours & the drive is about the same. It would be all fine & dandy if he could of been satisfied with that, but no! He was satisfied with going to Florence, but as I’ve said since I started writing, Jack can’t get no satisfaction (with anything)! Jack began calling everyone in the phone book (literally) about his birthday trying to drum up gifts. If he saw a name in the phone book (a strange anomaly for teens his age), he called them. Jack has zero inhibitions. He then began calling Chuck E Hell-multiple times, daily even with questions about their facility & trying to make reservations . Then of course he wanted me to make reservations but I had to have a credit card. Mine of course was compromised (wouldn’t expect any less) & I had to wait on a new one to be mailed to me. In the meanwhile, Jack called our bank to see if he could find out any information on the person(s) who may of hacked my card. Then Jack started watching the video of his kindergarten & first grade year at Hamlet Presbyterian. These are the only kids he remembers from school in the videos, these are his friends to him even though he hasn’t talked to any of them since first grade. He still considers them his friends. He called them to ask them to go to Chuck E Cheese with us. What is so awesome is these kids would of gone, but I knew it would be too much on Jack & he would possibly have seizures & then I would have a mess on my hands with being so far from home. The list goes on & on with things his has done about this birthday. I so wish it was like when he was younger & didn’t pay attention or know anything about dates. He wouldn’t know anything about his birthday until a few minutes before it happened! Jack’s real-life story is mimicked after the children’s book If you give a pig a pancake. One day, I’m going to write a story about Jack in an adult storybook version.

Y’all just won’t believe what all we have had to contend with about this birthday. From Jack’s two caregivers, our family, friends, random phone book people, the employees of BB&T now Truist lol, the employees of The Berry Patch & Chuck E Cheese. It has been absolutely unreal & I think this year has been the worse yet. I dread going to Florence on Sunday. Thankfully, we’ve drummed up several adults that are going so hopefully they can help me keep him occupied & the ride to & fro won’t be so terrible. My biggest worry is him interacting with the games which is why he wants to go & being germy. But there is no virus big enough to keep him at home, we will have to face whatever repercussions that come from our Chuck E trip. He would beat our tails on a regular if he didn’t get to go. Then there is the dreaded junk prize counter to cash in your tickets for some dollar store trinket. It never fails, Jack always wants something that needs 5,000 tickets & he only has 289! Conveniently, if you don’t have enough tickets, you can also purchase items. It makes no difference to me though, I would pay $100 for a shirt & a Chuck E Hell pencil that will never be used just to get us out of there! Seizure-wise, Jack is doing better & Pekin Wok-wise, he is doing so much better. He was on an eating kick, we were unable to fill him up. Once we increased one of his seizure meds, both the excessive eating & excessive seizures slowed tremendously. All I can say is, y’all pray for us!!!

Author: dravetsyndromeblog

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

17 thoughts on “No Life to Live”

  1. Amy, you and your precious family is always in my heart,thoughts and prayers…. please if ever I can help in any way I there… simply text or call and I’m on my way. Love you all

    Liked by 1 person

  2. Per the Bible God never gives us more than we can handle, he places these kids in our lives to care for and keep safe until they get back into His arms. So many of us have special needs people in our lives, even though not everyone is the same and we don’t live what you do, I sincerely hope Jack never reads what you post about him. He didn’t ask to be born this way and I’m sure he’d rather not live like he does. Prayers for all.

    Like

    1. Per the Bible, do you not also believe that God gives us all wisdom? As this lady mentioned she has sought God to give her answers, sought to figure out what the right thing to do is? I read her message and envision her being liken to the woman at the well who had tried everything except drinking of that LIVING WATER 🙌. Just what if Jack could get help in a home? Somewhat routine, better way of life, since of normalcy? The Bible also actually says also “and some having compassion, making a difference Jude 1 v 22”. I literally could go on and on about your judgemental remarks while I never argue and even more so with an anonymous person but I will leave you with this. If more Christians “Christ filled” would show more compassion, empathy, and love. Our world would be a brighter place. I will also add that I wholeheartedly stand with Lee & Amy because I actually know what beautiful souls they are and I wholeheartedly believe they have sought out WISDOM.

      2 Corinthians 1:12
      For our rejoicing is this, the testimony of our conscience, that in simplicity and godly sincerity, not with fleshly wisdom, but by the grace of God, we have had our conversation in the world, and more abundantly to you-ward.

      Continued support and prayers for you guys 🙏❤️

      Liked by 1 person

  3. When you are given a child with a disability or any child of that matter, he/she is a blessing and as a parent you should do everything in your power to help your child live life to the fullest. This upsets me because he is seen as a problem, Jack is a wonderful kid and as his parent you should find loopholes to let him experience things everyone else experiences. Instead you post about how much of a burden he is on social media and I pray he does not see these things you say about him.

    Like

    1. How would he see if unless you show him? Why not reveal yourself so we can chat about it since you’re so concerned. Also, if you really knew anything about the situation, you would know that our lives are in danger every single day with Jack. I only hope our experiences could help someone else. He is a burden when he is threatening, a burden on our safety.

      Liked by 1 person

    2. And furthermore, he can’t do experiences because of his behavior & seizures. You know absolutely nothing about this situation obviously. Please block me & never respond to anything else I have to say. You have made an already stressed mama that loves her children more than life itself very upset.

      Liked by 1 person

    3. What really makes me upset is you have no idea whatsoever the lengths we go to to keep Jack from having violent rages. We do whatever is necessary to prevent him from acting out because he will literally kill you. Does that sound safe to you? I can take constructive criticism, but when you critique my love for my child, that’s a different story. I have exhausted every single loophole as you call it there is. Why do you think Jack is still at home? If I gave up so easily, he would not be. If I didn’t love him, he would be in an institution right now. I hope your prayers are sincere because you really sound like an you could be an evil person.

      Like

      1. And lastly, I write my blogs in hopes that someone could help us. Jack is a part of the system that is broken & has not been able to. It allows me to access all different types of people who may know someone in similar shoes & can offer suggestion or help. Meds haven’t helped, the doctors haven’t helped, the system hasn’t helped. But you know what has, prayers. How will people know how to help if they don’t know the issue? How have you helped me? In fact, through this, a friend put me in touch with a family member who had a similar issue & told me about a program for her daughter that might be a possibility for Jack.

        Like

  4. Amy, I understand! Sometimes when life gets so hard and so stressful we have to vent to keep our sanity!!!i know when my husband had dementia and I was his caretaker, there were days when I thought I would lose my mind trying to deal with him and the daily struggles! I would lose it and act ugly! Don’t listen to these people who have probably not had to deal with anything as stressful as what you are dealing with! I am praying for you and your family!

    Like

  5. I’m so sorry you all have to live this almost daily. My prayer is a perfect home for Jack will be made known to you soon . You have raised him for 19 years and I know you love him . I sort of relate this to most Alzheimer’s patients, there comes a time when you’ve done all you can physically and mentally do and have to find a safe place for their safety as well as yours. I admire you and Lee for everything you have accomplished while dealing with Jack’s illness too. You are in my prayers…. hope everything goes well with the party.

    Liked by 1 person

    1. Thank you sweet friend. Only those that have lived in similar shoes know what I mean. I can deal with so much, we all have & do daily, but our safety comes first.

      Like

  6. Amy, you and Lee are amazing parents to Jack (and Coleman and Ava). Don’t let the feelings of one person get to you. I throughly enjoy reading your posts. They make me laugh, make me cry, and most importantly teach people about Dravet. It’s a great outlet and as moms, and humans, we need an outlet sometimes to spill our guts. I get your questioning Him sometimes, I find myself doing the same with Kai. Know that you and your family are covered in love and prayer by so many people from all over. ❤️

    Liked by 1 person

  7. Amy you and Lee are precious people and I’m so sorry that y’all are having to go through what you’re going through. I pray that God will put a hedge of protection around you and your family & keep you safe, well and in good health and give you the peace that you need. I pray for that God will instill a spirit of peace & calm in Jack & fill him with love & joy. No one has the right to judge you because the Bible says judge not lest ye be judged. I have a plaque in my house that says if you can be anything be kind. Kindness & prayers are what you need, because nobody knows what you’re going through except God and you. God bless you hon & know that you have far more people who care for y’all & who are praying for you also than the few that would come against you & try to make you doubt that what you are doing for Jack & your family is wrong & not enough. Out of all the good God sends your way, there’s always going to be that one who will be cruel. God is a good God & an on time God. He will never leave you or forsake you. Your help comes from our Lord Jesus Christ. You & your family will continue to be in our thoughts & prayers.

    Liked by 1 person

  8. Amy you and Lee and your family are precious people and I’m so sorry that you’re going through such a trying time. I pray that God will put a hedge of protection around you and your family and keep you safe well and in good health. I pray that God will instill a spirit of peace and calm in Jack and fill him with love and joy. Y’all are good parents & no one has any right to judge you. The Bible says judge not lest ye be judged. Just remember that you have so many people who love y’all & are praying for y’all. God bless you

    Liked by 1 person

  9. Amy I didn’t mean to send 2 of basically the same message but it was showing that the first message that I sent last night, didn’t go through. Just take it as double the love ❤️ from us to you.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s