Voices of Strangers

Today is the first day since around the first of December of 2018 that I have been truly broken-hearted 💔. This broken heart is because Jack has fallen back into an old routine, which are chatrooms. I knew this day would come eventually. At Christmas, Jack was gifted with a year-round elf to help police some of the things he does. The elf praises Jack for good deeds & brings little prizes, but also leaves notes of warnings for getting into things he shouldn’t. His behavior has lied in the hands of an elf since Christmas Day & it’s worked amazingly. Jack’s door has been open most of the time, he’s been singing for us nonstop, communicating with the family. In the span of one day, some girl has been calling him & he’s been asking her to come live with him, listening to various people chat from who knows where talk about everything from smoking, getting arrested, drinking, to politics-not appropriate for any teenager let alone a mentally & somewhat physically disabled teen. In just a days time, his door has gone from open to closed, zero communication with me other than ordering me to fetch something for him, to hearing muffled talk from strangers about the above topics with foul language interjected at nearly every breath from these strangers.

It’s just Jack & myself home right now & the sadness caused by the turn of events makes me feel so hollow. Knowing that Jack doesn’t have the capacity to understand the ramifications of his actions is hard to deal with. All babies are cute & precious. When a mother or father are holding their babies, they never imagine that their chubby, smiling or crying baby could have a life of trouble. Most parents imagine their bundle of joy going to college, having fun with friends, scrubbing mud stains out of uniforms, vacations at the beach, carnival rides, teaching them to change a flat tire, maybe marriage & grandkids. We were robbed out of that with Jack. He is unable to do any of that. His day is spent on the computer. When I look at Jack’s pictures of him as a baby, I see pure sweetness. How could anything so sweet & joyful end up with a life like the one he is leading.

Jack had a dental appointment Monday, a checkup at UNC Tuesday, & he got a haircut Wednesday all of which he refused to go do. Thankfully, he relented & did all three but not before calling & canceling his haircut appointment & then calling to cancel the cancel! Three outings in a row, we were amazed. I guess it was the calm before the storm. For his yearly neurology appointment, Jack had to have some bloodwork. I was able to see the results yesterday, his BUN levels & other kidney level functions were elevated. I haven’t spoken to the doctor about this yet & if they want to do further testing, Jack will probably refuse to go. He doesn’t drink near enough in a days length. A lot of days, he’ll take a sip to wash down his morning meds & not drink another sip until 12 hours later when it’s time for the next round of medication. He voided Friday & didn’t get back out of bed until Sunday morning to void. He spent well over 24 hours in his bed, not taking one break to pee. These elevated levels probably came from dehydration & holding his urine.

As I sit here alone in my bed listening to the voices of strangers. I’m in bed because I can hear better into Jack’s room. Lee says I’m going to make myself crazy by doing so, I think I’m 1/2 way there. This makes me feel like I have some control on the situation. It helps me to have a heads up on what is being said or even perhaps arranged. The emptiness I felt for so long has returned, it’s been a great vacation. Those people turn Jack’s attitude into a more-so sassy & irritable mindset. The reality of residential placement is always on the forefront of our minds when he’s in this cycle. I think it would be a relief in a small way, but that small amount of relief would be replaced with so many other worries; actually getting him placed, would he be treated properly, his safety, etc. He would not only be mine & Lee’s responsibility, he would become someone else’s & that is a reality I am not ready to face.

I ask of our friends that you pray that the voices of strangers will disappear & Jack can get back to his normal. Thank you to all that pray for our family, we are so thankful for you all.

Author: dravetsyndromeblog

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

7 thoughts on “Voices of Strangers”

  1. Lord we ask that You touch Jack with Your healing hand. Please also help the whole family to know Your love in a special way. We thank You for Your great works in Jesus name. Amen

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  2. I pray for Jack and for all of you each night Amy. I pray that God will intervene with these people that contact Jack causing so much turmoil in your life and in Jack’s. Praying for open doors, communication, singing, guitar playing , peace, rest,love and continued prayers for you all!

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  3. Amy I feel your hurt and my heart breaks for you and the family but especially for you. I do understand the pain you feel when your child has problems you can’t fix and prayers are the only thing that holds your thoughts together. Sometimes we have to build a wall around our heart to keep it from falling apart. A Mama’s love is like no other and all we can do is love unconditionally. Sending prayers and hugs.

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