Passing in the hall

Lee does not know he named this blog, but he did as we passed in the hall one day.  This title is so representative of how our lives are currently.  I am home all day with Jack, most days not seeing anyone until Coleman & Ava get home from school, Lee comes home in the evening around supper time, & lots of times, I pass him in the hall leaving as he is coming in.  Me leaving is either to take Ava to dance (Thursdays-yuck), run to the store for groceries, errands, or simply to get out of the house since I am secluded inside all day, many days of the week.  As I was walking out one day, Lee said, “I feel like all we do is pass each other in the hall.”  Now this statement was made a few weeks ago, but it has been weighing on my mind ever since.  It’s only every few weeks that Lee & I actually get to see each other one on one.  We try to go out on a date depending on Jack’s mood, twice a month.  Although we LOVE Southern Pines, it is a bit played out.  We try to go within 30 minutes of the house in case we need to get home quickly.  These Saturday night dates are not the most enjoyable nights either.  We feel like we are taking a chance.  Taking a chance with the safety of Jack’s helper, Linda.  If the phone rings, we panic, if she doesn’t answer the text I sent to check on her & Jack quickly, we panic.  Our lives feel like a constant game of Russian Roulette.  If we could make money from worrying, we would be billionaires!

The ramifications of the turmoil of Jack’s behavior is not lost on us.  We worry about what this is doing to Coleman & Ava.  When Ava gets home from school, she goes upstairs & locks the door because she is scared.  Ava is an early riser like her Daddy, on mornings when there is no school, she stays in her room being as silent as a mouse because that is how she has been trained.  We live in a 1923 built home that has creaky floors & thin walls.  Ava knows that Jack will hear any little sound & will wake up before he is due to if there is noise in the house.  So whoever is home, whether Coleman, Ava, or myself, we are held hostage in our rooms until Jack is awake.  Even then, they don’t like to come out because Jack is so wild (bull in a china shop wild).  Often, it is 11am before I see them.  What a tragedy.  Though it’s just a few hours, time adds up.  The thought of the kids upstairs alone in their rooms so frequently breaks my heart.  I never thought I would have to text my children to communicate with them while they are inside the same house as I.  Not only do Coleman & Ava have to live in fear, go to bed with music blaring through the house & listening to Jack & his “friends” talk in those chatrooms until wee hours of the morning, have no vacations with their parents, but they are dealing with severe isolation from the very family that lives with them.  We are a small family in general.  Coleman & Ava don’t have cousins their age, most relatives are elderly.  So they truly depend on me for their entertainment.  Most kids don’t want to have sleepovers here due to our situation & I can’t blame them.  I just want to have normalcy for them & for Lee & myself.  Over 16 years of day in & day out worrying is draining to say the least.

The other heartbreak is the lifestyle that Jack is leading.  Jack is perhaps one of the most complex medical individuals I think the world will ever see.  What I have written & write about, does not do what we deal with daily proper justice.  One minute he is singing Hot Potato by The Wiggles (that is music for toddlers), the next singing Rockstar by Post Malone which is a song littered with horrible language, then onto Keith Urban.  He gets mad over simple things like trying to put his McDonald’s food in a plate versus the containers they came in.  He pretends he is asleep very often which is never a good sign, this is often a symptom of impending violence because he isn’t getting enough attention, but in the same breath he does not want our attention (confused yet?).  He plays his music as loud as it goes, but the closing of a cabinet hurts his hears.  You never know what to do, how to react, what to say, it is a game of constant guessing.  He refuses to eat anything cooked at home & I love to cook.  His meals have to come from a fast food place or freezer food.  Jack calls Lee roughly 5 mornings out of the week requesting gravy biscuits from Dixie Burger.  When I do get to go town, he is calling asking for a Big Mac or something of the like.  Being the parents of this child is expensive!  If we go out, we have to pay someone to watch him, when I work, we have to pay someone to watch him.  Money is dished out all the time for a child that does nothing but sit in his bed all night & day.  I feel like I am servant to a very ill & unkind King.  After he gets settled on his devices, I only go in a few times a day to check for drink refills or food needs.  I must close the door after leaving.  If Jack needs something, he screams my name or snaps his fingers.  The only time he calls is, if he needs something like food, drink or the internet is out.

Decisions are going to soon have to be made.  Do we add onto the house we live in now & have separate living quarters for Jack, do we remodel a house that we recently purchased (but that is going to take a long time), or do we find a residential home to place him?  These are all extremely hard decisions to think about, but imperative that we do so soon!  Please think about us through these next few weeks as we dwell on what is best for our family.  Pray for guidance, the weight of worry to be lifted from each of our shoulders, & of course safety.  Pray that our passing in the hall will turn into smiles rather than tearful eyes.  I never want my blogs to come off as a list of complaints, I write the blogs because so many people ask about Jack & his condition CAN NOT be summed up in a 60 second paragraph.  Thank you all for your prayers & feedback on my blogs-keep them coming!

Author: dravetsyndromeblog

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

8 thoughts on “Passing in the hall”

  1. I love ya, Amy! And, I love that sweet Ava! She was precious in my classroom and still is to me! I pray daily for y’all. You are an excellent mom and a great example to many! I cannot imagine your pain as you take care of Jack and his needs. Ava is one of the most responsible and respectful children I have ever been around. I think Ava and Coleman will turn out as better human beings because of the way they’ve grown up. Love you & your family!

    Liked by 1 person

  2. Amy I know you are a good mother and wife and I don’t know if I could handle what you do,I know that you all would soon make a decision and I know you will make the right one, pray God will guide you in the right way. It is time that you have a life and with Coleman and Ava. & Lee I love you Amy and your family God will let you know what to do God Bless you,

    Liked by 1 person

  3. As always I am so in awe of how amazing you handle this situation. I continue to pray for you and your family and the peace you so much deserve and need. You still have this awesome smile and way you treat others as an example of how we all should live. 🙏🏻

    Liked by 1 person

  4. Prayers abound for you all! Praying for you to have clarity in whatever decisions that come. You and Lee are great parents and I am always amazed at how well you both carry forward each day!!! Love you all!

    Liked by 1 person

  5. I am always in awe of how you deal with the many challenges of each day. I pray that God gives you and Lee the discernment needed to make the decisions you both face!

    Liked by 1 person

  6. I hope you have a support group of parents in similar situations. I know a lady who has two sons with extreme needs if you need to connect to someone that might come close to understanding. Prayers for you all.

    Liked by 1 person

  7. Amy, I am a mother of a young man Noah, who is 34 years old and has Dravet Syndrome. I get it, the fear, the frustration, feeling like your fear will overwhelm can, and it does…I would be happy to talk to you at any time in regards to living with a child that has DS through the years… son is developmentally 3 years old…believe me when I say, they are perfectly able to manipulate the whole family If allowed…..we can “chat” on the DS FB page


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