When the Struggle is Real

We’ve all used the famous term, ‘the struggle is real’ for little things like the handle breaking on your grocery bag, waking up at the crack of dawn for a meeting, indulging in a sweet treat when your pants say otherwise, but when I use it the term, it comes from a place much deeper than the above examples.  Do you ever get plum fed up with struggles?  I know we do, it’s like, what could possibly happen next.  As if the struggles at home weren’t enough, we are constantly having to fill out paperwork for Jack’s disability (we actually have to prove his disability on numerous occasions), paperwork for for the business, fielding calls from people Jack has given our home number out to, whether telemarkerters or people he befriends in chat rooms, tax questions/audits, & the normal day to day family stuff.  Our house is nothing but boxes, papers, & receipts.  It all gets to be too much at times, I am not only a wife, Mama, secretary, pretend doctor, but a professional boo-hooer.  I have cried way too much over the last year, I’m hoping that can soon change.  There are things going on with Jack right now that I don’t care to write about; however, I will say it’s not good & that has really taken a toll on Lee & myself.  When I have mentioned in blogs before that it is something new each day, I literally mean that.  I know there are lives that have been more severely affected by trauma worse than ours, so please forgive me for getting down, but a break from our reality would be super!  Just yesterday, a girl from who knows where called our house & was telling Jack he needed to get to the hospital.  She told him that the doctor called & said he has diabetes & must get there immediately.  After Jack hung up on her, she called back to tell me the same thing.  I told her I was Jack’s Mother & for her not to call back.  I mean how foolish does this gal think we are!  There are so many cruel people on the internet, if only Jack were interested in his own family & the community that surrounds him, life would be a little simpler for us.

Two weeks ago, Jack had an amazing week.  In fact, he ventured out to Walmart twice in two days, wanted to dine inside a restaurant instead of takeout, visited with his Aunt Vicki & Uncle Chuck, even made it past the kitchen to interact with us.  He was so kind & sweet during this time, never once getting on chat rooms, limited device usage, even going to bed before midnight.  Then the switch flipped & normal or abnormal behavior (not sure which one it is) ensued.  It’s moments like those that make you question whether or not residential care is best.  It’s one of the sneaky ways that makes us as parents question placement.  Another sneaky example is, how will someone else be able to care for this child that I have cared for for over 16 years nearly 24 hours a day?  Just having Dravet Syndrome makes you so very fragile.  There are evil ways Dravet rears its ugly head, not just through seizures.  Behaviors, illnesses that come on so suddenly & put the child in life-threatening situations in the blink of an eye, gait issues, cognitive problems, & more.  Jack started out with two 1/2 inch long stretch marks on his mid-back 3 years ago, today those stretch marks are nearly 10 inches long expanding across the width of his back working their way to wrap around his torso.  This is the result of scoliosis, which is also a characteristic of Dravet.

It is highly exhausting to go through life planning so throughly.  When I take my shower must be planned, I never go to bed with my makeup on because we never know what the midnight hours will bring, are the clothes washed up, dishes cleaned, all the normal household stuff that we all do, but in our case, it’s done in preparation of a hospital stay.  Being the parents of a special needs child, has made us physically & mentally exhausted most of the time.  From time to time, there are articles that float around on social media about how to help parents of special needs children.  I would just like to say, that all of that is true!  I would like to add this, no matter how put together a family seems when faced with difficult situations, there is always a need.  There have been a few close friends to offer to get our other children when they were younger & that was greatly appreciated.  Helping these families with their other children IS the biggest help of all.  I have been fortunate enough to have family to rely on for this mostly.  There have been times I have taken all three children to Jack’s appointments because I hated to burden others by asking for help.  People do not like to ask for help, which is why it is up to you to step up to the plate & offer for them.

I talk a lot about Jack’s cognitive delays, but I would be remiss not to speak of the knowledge that boy contains about subjects most children his age have never nor will never know.  Jack is somewhat of a savant.  This child knows facts about The Bismark!  I don’t recall learning about the German battleship, but we have all been schooled on the sunken ship.  He is an old soul much like me.  I’ve always been drawn to the 50’s era & Little House on the Prairie lifestyle (I know big difference, but both so innocent in my mind) & I LIVE for Golden Girls-thank goodness for the Hallmark channel!  Jack knows things about animals, Jerry Reed who starred in Smokey & the Bandit (1980’s), Elvis (even has these two in his music playlist), countries around the world, the Titantic, & more.  He has the memory of an elephant, never forgetting anything anyone tells him.  What a boy!

Do we have what it takes to fully commit to placement?  How would Jack react to us afterwards?  I received a call earlier in the week from someone working on his case about a home in Greenville, NC.  That is too far for us.  His condition is so rare & subject to change so quickly, that I feel we need to be closer if we are going to do this.  If we don’t place him, what kind of damage are we doing to our other children-I worry about the psychological ramifications, especially with Ava.  Coleman is going off to school soon & will have so many wonderful (I hope) experiences, plus he has gotten through the chunk of his development.  Ava on the other hand is only 12.  She experiences things most children have no clue about, thankfully.  Will these experiences teach her anything positive?  Will this affect her relationships in the coming years, will she or Coleman be resentful of us for allowing Dravet to rule their childhood?  Will they not want to be parents when they get older due to Jack’s condition?  So many questions that we can’t answer, so many decisions to be made.  Why can’t the struggle be real as in Starbucks gave me a Frappuccino with only three pumps of raspberry instead of five?

Author: dravetsyndromeblog

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

4 thoughts on “When the Struggle is Real”

  1. Amy your whole family is in our prayers! You all are amazing and strong. Your children will be affected by this but in a positive way. They already display strength and character and independence and caring/compassion and HUMOR! They show that they have wonderful parents and they understand things other people have no clue about, but they are wonderful kids. So is Jack, he is an amazing young man! I have always thought he was super smart. Jack and Sarah always have been buddies and he could give Sarah a run for her money! Even now you can see his level of intelligence far exceeds most kids his age. I am glad the “real Jack” was able to be home at least for a few days. God be with you all as you make decisions. I will be praying because I have no idea how you do any of the things you do each day. Please accept my offer to stay with Jack for you to have an outing with the rest of your family! I love you guys!

    Liked by 1 person

  2. Amy i cry as i read this because “the struggle is so very real” . I pray that God leads Lee and you in all the right directions. That He touches Jack and eases his aggressions.

    People do not know the reality of having a special needs child. The heart ache, fear, uncertainty, constantly on edge. The sleepless nights, days, weeks, months that start blending together. And how much if a toll that takes on you. I am praying for you and your sweet family.

    Like

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