Jsack's Mom's Blog

Welcome to my blog where I share my special needs parenting journey with my heart, truth, and love, one story at a time. ❤️

Ten Things of Thankful

  
It’s that time again to say hello, and tell you how thankful my week has been. I’ve had smiles, tears, laughter, love, and forgiveness. There’s also been blessings,  ephiphanies and the realization that I’m a force to be reckoned with. Let me tell you a story of my gratitude as part of Lizzi’s TTOT linkup
I’m thankful for a quiet Monday this week after we just got back from a fun but busy hockey tournament. I was feeling drained and a hot tub soak, chiropractor visit, and a home cooked meal were just what the Dr ordered. 

I’m thankful that I don’t take no for an answer in the medical community. My youngest son was scheduled for surgery on Tuesday and late Monday night he started running a fever out of the blue. He had a slight cough and was burning up I had no medicine left in the house so my husband had to bring some home after hockey practice. I phoned the hospital and alerted them of our situation. I was told to still bring him in and have him assessed the next day. 

I’m thankful for my husband bringing home Tylenol our poor little boy was so feverish and falling in and out of sleep. I put a cool cloth on his head while he slept in our bed all night. I was so afraid to leave him alone with his fever and sleep apnea. He radiated heat all night and his fever didn’t break and I sat on my bathroom floor crying and praying for him to be well again. 

I’m thankful when we did get to the hospital how thorough the nurses and Dr’s were with my son. Taking his blood pressure, checking his temperature, and listening to his heart. They had to cancel the MRI again with the fever of 101 Farenheit and postpone the surgery. I asked a lot of questions and asked the Dr to assess my son and explain to me what the risks were associated with administering an anesthetic in colleration with a fever. She was patient and felt sorry that she had to cancel since we were up at 5  am to get to the hospital and she was aware how much we have to prepare our son for these hospital visits. 

I’m thankful for a day to rest just cuddling with my sick little boy this was Wednesday and his fever was still high at 100 Farenheit. It had only come down a degree and he just laid in bed and slept most of the two days. Both my children and I run high fevers so it’s our “normal” but I still watch for signs of febrile seizures which can occur from infancy to the age of six. 

I’m thankful for day four (Thursday) and goodbye fever and hello happy boy! I still kept him home from preschool in case there was any residual germs floating around. It’s still unexplained what he was fighting off with no cold, flu, or infection symptoms possibly a virus.  We worked on fine motor and gross motor skills training and napped to conserve our energy for the weekend. 

I’m thankful for Friday TGIF it’s family movie night in our house and I was really looking forward to seeing Inside Out on Netflix. Wow that was the worth the wait what a lovely movie. That really helped touch on some anger and anxiety issues my oldest son was having. I love movies with a message that all we need is love, appreciation, and to communicate our needs. 

I’m thankful for catching up on work assignments, cuddles and movies with my son’s, and hockey Saturday. Although my son’s team lost 4-3 they put in an another valiant effort when they were missing one of their top scoring  offencemen. I must say every arena I go to has an assortment of foods on the menu. This one had the best chicken fingers and fries I’ve ever had for hockey food. 

I’m thankful for Sunday a day of rest and reflection. I read, got almost all my laundry put away, washed, dried, and folded. It feels  good to have two weekends in a row where I’m not my laundry’s prison bitch. 

I’m thankful for learning a lot about myself this week. I didn’t panic when my son got sick, I usually do with all the other neurological issues he has. He was a premature baby so I’m used to him catching whatever germs floating in the air. Yet he hadn’t ran a fever like that since he was two years old! I stayed calm, used my essential oils on him and myself, gave him medicine when he needed, and let him rest to strengthen his immune system. We will wait and see what happens with rescheduling his hospital procedures. I feel I’m better prepared and equipped to handle them then I was before. 

Thanks for stopping by today, goodnight my sweet readers. 😘

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Monday Musings Worry

Waiting for days on end for news that I’m praying will be positive instead of negative. I watch my son’s behaviour to indicate if he’s having seizures and I’m missing out on documenting them. My mind can go in a thousand different directions without hearing any results for a month. And trust me it has, is this how my life is supposed to be in constant worry for his health? 

I never knew when I rubbed my belly at eight months protecting him from the news of my Mom’s death that I would be in this state of mind now. I never knew with him arriving at thirty-six weeks we would encounter all these medical issues. I wasn’t prepared for my one and only Mom’s death, nor ready to to give birth prematurely. 

I went home from the hospital reeling with grief while my baby had to stay behind in the NICU (Neonatal Intensive care unit) I had a four year old son and a husband that needed me and I felt so torn. All I wanted was my Mom to hold me and tell me everything would be alright. But I didn’t have her then and I don’t have her now. 

Being a special needs parent feels a lot like venturing out on a lonely road to find my happy, peaceful place in my mind and body. A lot of the time reading and researching helps so I know how to approach Dr’s and specialists with my questions. What is the reason that my son’s Global Developmentally Delayed, why does he struggle so much with basic concepts of visual spatial relations and verbal fluency with his conversational speech? 

Why does he suffer with anxiety, OCD, and possibly ADHD behaviours?  I’m told he was born early so he would be delayed to reach his developmental milestones. Which is half true he sat up and crawled later then his peers, but walked early and ran laps around me by the time he was fifteen months. Yet there are challenges, his speech was delayed, he had a high threshold to pain, but a weaker immune system and was sickly as a baby. 

Life has turned into a system of checks and balances he’s been tested for genetic disorders, allergies, and I’ve completed many developmental questionnaires. To date he’s had a polysonogram and an EEG that will be followed by an MRI and surgery to help improve his severe Obstructive Sleep Apnea Disgnosis. He has a wonderful therapy team that is helping him succeed so I question myself what do I have to worry about? 

I worry for his future will he hold down a job, graduate and go to college, meet someone special and fall in love? What will it be like when he does and he gets his heart broken? How will he cope with his anxiety, how will I? Will he still be living with us or in assisted living? I pray he will be continue to be his own success story as I cheer every accomplishment he makes. The latest is remembering words to the Christmas carols he practiced in preschool. As well as being able to sing Head, Shoulders, Knees, and Toes while performing the actions. 

When we would sing that song before he’d get so confused and start yelling and putting his hands over his ears to block out all the excess information flooding his brain. I had to explain to his preschool teachers that the song irritated and I think even scared him. It broke my heart to see his reaction so after three months of therapy he can sing the song with a smile on his face. Then I think you don’t have anything to worry about he’ll be fine. I’ve heard this from well meaning people in my life and I always say he will be with the proper early intervention in his life. 

The call I’ve been waiting for finally came in today after waiting for thirty long days! The results were great there’s no seizure activity but his brain will need to be assessed at his MRI. So I arm myself with Teflon encased around my heart, cover myself in prayer and I realize I’m not emotion or bullet proof but I have God and a wonderful support network on my team. I will help my son get through this with love, acceptance, and prayer. I’m a warrior, and I love homand I may get knocked down with worry but I will always get back up ready to fight. 

It’s time for #Mondaymusings and all you have to do is this list of things. 

Write a post sharing your thoughts with us – happy, sad, philosophical, ‘silly’ even. Make it as personal as possible.
Use the hashtag #MondayMusings and link to this post.
Add your link to the linky which you will find either here and on the post of a co-host.
Use our #MondayMusings badge to help other bloggers join in too. Write Tribe is going through some maintenance so it will be hosted at a different website for a few weeks. 
Today’s Monday Musings is co-hosted by Crazy Little Family Adventure and Everyday Gyann please check out their posts and all the other talent that link up. 

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#Monday Musings and my Mindful thoughts

I have so much I want to say, write, and express. Sometimes I feel like there’s not enough hours in the day to get it all out! The words spoken or written come out in a humble jumble and I breathe a sigh of relief. Finally I can focus on something that needs my attention like my overflowing laundry baskets, neglected emails, and that ugly bath tub ring staring at me. 

I get consumed sometimes like there will be there be enough hours in the day to purge myself of these thoughts that hold me captive. Will there be enough lyrics in a song, enough stanzas in a poem, will my insatiable thirst for knowledge ever be quenched as I spend my late night owl hours researching neurology? 

Will I allow myself to rest or will the anxiety monster that lives inside me roar up and raise its ugly head yelling at me never shall you sleep with ease while I’m in charge! What is it about this desire, drive, curiousity, and deep seated need that feels like home to me? It’s all I’ve ever known so is it possible to be something or someone else who isn’t acting on the impulse of that steady thrumming in my head and heart?  

To be all I can be, when I can, as much as I can before it’s too late! And why will it ever be too late when will the worry jagged lines carved into my brain cease to exist? I really can’t answer that to worry feels like breathing to me. I can get on a good righteous path and do really well with controlling it for awhile. Then something always happens and sends me into a tailspin watching, waiting, and questioning my anxiety fueled fears. 

Gripping me in it’s vise grip hold choking the pure joy out of me and drowning me in sadness and worry. I want to break free and live that life I dream of on the overside of the coin, than overdose in this blanket of fear. I cry out in pain, praying for God to release me from this torment of my mind! My life has never been an easy one like anyone else on this spinning orb we call earth I grew up in dysfunction. 

I was loved it was just the people who loved me grew out of love for each other. Or maybe there was a deep rooted love there but no respect. I spent my childhood days wanting that picture perfect family I saw shining in all its Hollywood glory on Happy Days. Even the Fonz in his cool leather jacket, and rebellious ways was Arthur to the Cunninghams and was loved and found worthy.

Why did I need this so much I was only four when my parents separated? I worried so much with my religious background, that they would end up in purgatory for their sins. I wanted desperately to solve the problems of the adults around me and everything to go back to what I considered normal. That word always left me feeling so inadequate because I never felt like I could live up to its expectations. 

Normal is really just a figment in my mind. My Mom always told me I was born to stand out and to never let anyone tell me my star couldn’t shine. She had such a lovely positive spirit and a way with words spoken, written, or sung. Losing her was my normal first to dementia, and next to death. When both felt like my heart was being ripped from my body! 

There are days when I just don’t want to worry anymore. How I just want to see my beloved Mama again and collaspe into tears in her lap; where she strokes my hair and tells me this too shall pass. But she’s not there and sometimes it’s only a Mom’s hug that can heal the wounds of your heart. 

An emotional roller coaster on the anxiety highway is my reality. When it gets too much I turn off the world and unplug and slip into my sensory pleasure of music. Singing with all my being so loud that even heaven could hear me. Those are the times I feel closer to my version of normal and as my heart soars and my spirits sings, getting me one step closer to God and freedom and to her voice and love. 

Today I’m linking up with #Mondaymusings hosted by Corinne at Everyday Gyyan and co-hosted by Reflections. I thank them for this opportunity to link up and express myself to a new audience. 😊

 

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Ready, set, go! 

I have so much to do and I’m already overwhelmed thinking about it. I have never ending overflowing laundry baskets and I’m totally my laundry room’s bitch for the past two weeks. I’ve got a wicker basket full of stuff I need to do, and the paperwork monster is threatening to grab me in a choke hold till I cry uncle! I know I can take things one day at a time but it’s my brain that never shuts that doesn’t get that message. 

Last week I had a meeting with my respite worker she asked me if I was a list person. I replied yes I love making lists, a lot of my blog topics start out that way. She asked me to write things out instead of using my notes app. So I did and it’s amazing how something so simple, can be so affective. Today I made another list and each day I cross off my accomplishments. It feels good to see that I’m taking care of things, but my overwhelm is with all the things I still need to do. It’s easy for me  to dispense out advice to friends and say look after your priorities and the housework will be there tomorrow. Like death and taxes laundry will always be something you can count on happening. 

I feel like I’m at the start of the race and I’m waiting for someone to be standing there with a pistol saying ready, set, go and I’m off like I’m lit on fire when I hear that shot go off! On one side of me is my calendar jammed with appointments, and on the other is my phone loaded up with texts, emails, and blog topics I need to return and write. At times we’re neck in neck and I literally feel the sweat pouring down my brow. Then I’m wiping it, dying of thirst, and I fall behind and struggle to keep up. 

There are many phone calls to be made, test results to track down, letters to be written, paperwork to be signed, and faxed. I’ve literally been held paralyzed with anxiety that I have to complete all the things and do it record time. The finish line appears to be so far away and my eyes are getting blurry as exhaustion starts to overtake me. Must be the fact I’m dehydrated and in need of something to quench my thirst. And that pesky cataract starts to bother me when I’m tired. So I start veering off the track and daydreaming while I can scarcely see my opponents in the distance. My vision doubles and I start to yearn for my couch. 

There I can have my fuzzy blanket and security while watching Lawrence of Arabia and enjoy eating a bowl of ice cream. This parenting gig can be hard at times. Add in a list of objectives, goals, and lists and you’ve got another job. Sometimes I just want to say &@@@ it and leave for someone else to do. But if I do that then my children won’t get the services they desperately need. I can’t miss out on that, no matter how mentally, emotionally, and physically, exhausted I am. It’s not fair to them or to me if I fail, there’s a lot of resources and a lot of families in need as well. The autism journey can be a bumpy one at the best and worst of times. I’m learning new terminology everyday and as my brother says ATL’s (another three lettered acronym). 

He told me that last week and I laughed so hard, for about fifteen minutes as my life has become all about the letters. When will it all begin, when I’m assessed for funding, get a case worker assigned to me, or get a therapy team in place. There will be more people joining our small circle, lots of transitions, more appointments, and more trips into the city. I will be requesting a lot of home visits in the beginning. Getting my youngest son prepared for these upcoming changes and strangers in our reclusive world. This is never easy and I can use all the PECS (Picture Example Cards) available, but if he has anxiety about it all it’s just not going to happen. 

I honestly don’t know what to expect from branching out into this new world of programs, people, and personalities. I’m thinking as positively as I can and preparing and educating myself as well. So off I go into the sunset leaving worn out ideas, speculations, and false truths behind. From now on its facts, concrete results, and verified diagnosis’s that will matter. I owe it to my children to get them all the help I can. And I owe it to myself to know and believe this age old wisdom from Yoda. That little green guy’s wisdom has touched my life with its simple but gifted advice more times than I can count. Special thanks to http://lindaghill.com for the writing prompt. I couldn’t think of anything to use it for till now. It’s funny  how I just looked at this picture and words started flowing. Green man wisdom for the win!

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Always

I will always worry, even when someone says don’t worry about it. I don’t know why I’m like this, is it the way I grew up, or do I get some kind of pay off in the end? Tough questions to ask myself for sure, but in the questioning comes the truth. I come from a long line of worriers. My beloved Mom, Gram, and her sisters were all worriers. Then they raised a next generation of worry warts. I remember when I was kid and I’d hear a family member say something like “I’m going to go visit my sister on Sunday, which is an ordinary conversation. Added with a prayer would be “yes if God spares me, that is. ” There was nothing ordinary about that, I would question “why wouldn’t God spare you, he loves you!” It was a confusing time because then I would worry if that loved one was going to die! Then I would spend my time worrying and praying instead of playing and just being a kid. There’s no wonder I grew up with anxiety, I don’t blame anything or anyone for it. It was a generation of worriers raised by another older generation of the same. Growing up as empathic child was a double edged sword. I could always feel so much love by absorbing the energy around me. Than the alternative was fear, worry, and hate, and emotions so ugly they would wake me up screaming at night. My beloved Mama and my Gram would always protect me from myself. There was lots of prayers, love, and secrecy. As I told them about my dreams, aura colors, and energy I picked up around me. They were my precious protectors and really made me feel safe, even if all I was feeling was uncomfortable. So I question myself endlessly am I the product of my environment or blessed with spiritual gifts? I could let these deep thoughts and emotions overtake me and send me into a swirling vortex and suck me in. Yet I fight against them and just give them a moment of time in my head, and then move on. I owe it to my family to not always feel fear and worry. I don’t want to raise my sons to be afraid of life and all the wonderful things in it. I always have to fight and be vigilant to not let the demons of worry enslave me. I learned a lot from my previous generations of wise elders. I need to have my faith in God, the love of my family, and the believe in myself that I can rise above whatever my fretful mind can worry about. I owe to my family to at least try….

This has been my Sunday confession for Ash at http://morethancheeseandbeer.com. Check out her blog and all the awesome talent that link up. Smooches. 😘

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