House of A Writer

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

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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Able

I’m an able minded and able bodied person. I have abilities to problem solve and work out solutions. When I was in the workforce it was one of my greatest assets. I love to be thorough and research and I always have some kind of project going on. I’m very good behind the scenes about getting things done. What people don’t see behind this able bodied exterior, is the massive complex of anxiety I have. I tend to over think, over analyze, and work myself into a panic attack. My goal for this year was to feel the fear and do it anyway. So that’s what I’ve been doing, I’ve taken my kids on new adventures this summer with that “can do” attitude and even amazed myself. To most this might not sound or read like its a big deal, but to me it’s like climbing Mount Everest!!! I’m proud of these accomplishments, and glad that I could show my son’s that I can overcome this anxiety, I call the dragon within. I’ve always had that motto in life “to fake it, till I make it!” There are times when I’m literally shaking in my boots, but I stand tall and appear stoic. My beloved Mama always used to say be scared but never show it. And she was the bravest woman I’ve ever known. Married at 22, became a Mom at 23, then followed by 3 more children in quick succession. My dear Dad was a logger and he worked in some interesting places. So there was my Mom carving out a home life while living in these camps, in a little trailer in the woods. Four little children, no friends, no family, and my Dad working 16 + hour days. My Mom taught me what it was to be capable and able. My Dad taught me what it was to have strength, work ethic, and values. They both taught me to be able, to find my passion, to keep my head on my shoulders, and my feet on the ground. Together they created 6 able bodied and able minded children that have all had or trials and tribulations in life. We have made it out life’s goal to honour our living parents memory, and pass those values onto our own children. My parents came from very strong and able roots. My Grandparents on both sides of my family survived the Depression, World War 2, and many hardships with my Mom’s Dad away at war. I don’t have a choice but to be strong and able. Over the last week I’ve been meditating with Deepak and Oprah and learning about the energy of attraction. Each day I spend some quiet time learning how to start manifesting the life I want. Today’s lesson was about focusing on my deepest desires. I thought about the things I’m passionate about, that bring me joy, and thought all I want is to feel complete. And then I read this affirmation,

my deepest desire is for completeness.

“In the desire of the One to know Himself, we exist.” — Rumi

So here I am perfectly imperfect and working on having my inner self match my outer self. In each way, every day I’m getting better, better, and better, and more able to rise up and conquer my fears.

This is my Sunday confession brought to you by Ash at www.morethancheeseandbeer.com. Check out her confession and all the fabulous talent that link up. Thank you so much. 😘

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*Image used with permission from www.sharingwithshari.com

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