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. ❤️

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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Friday Feats and Fails 

Hello Friday where have you been? I’ve been searching for you since Monday and couldn’t find you. Whenever you show it up its so wonderful and when you leave I’m so sad. Let’s enjoy the time we have together before another twenty four hour day comes and whisks you away.

FEAT 

I had a great weekend wrap up to my Captain’s hockey season. On the Saturday it was the Dad’s versus the kids game. My husband was the goalie for the kids side. Every time one of them scored he skated to the blue line and high fived them. The Captain loved playing hockey with his Dad, and  I could see and feel his pride. *Sigh* how I love that man with all my heart. ❤️ On Sunday we had a wind up party at the pool. We swam, soaked, dived, played, and slid on the waterslide. It was an absolute blast, I even ran into an old work friend I hadn’t seen in ten years!!!  A great day shared with great company. I can’t wait till the next hockey season. Now onto to decide what the next sport will be. Soccer, baseball, golf, or lacrosse. The choices are endless in the big city!

FAIL

I had to deal with some confusion in regards to my youngest son’s health journey. I applied for finding through my province and received back a letter stating I didn’t have enough medical information. So I contacted my Paediatrician to ask her help. She got very ignorant with me and told me she couldn’t give me a diagnostic letter. I told her I wasn’t asking for that, I was asking for her to write up a letter stating that she made referrals to the children’s hospital. She said she put the referrals in and I needed to be patient and wait and get a diagnostic letter from the neuropsychologists. I responded I don’t want to wait I’m only going to be a case file till the end of May and I’ll have to apply again! She responded with more ignorance and said she could write me up a letter but it’s not covered by my insurance. I just need something that says she’s tested my child and the referrals are going through for more tests. So that will be $100 dollars for two letters ugh I’ve never wanted to throat punch someone so badly before! 😡

FEAT

Ive managed to keep my house fairly clean and get out and enjoy some beautiful spring weather. I also did a meet and greet in town where I didn’t know a soul. I even made some new friends and I went to geocaching three times this week. I love treasure hunting and finding little treasures its so much fun. My kids love it too, especially my youngest as he adds new treasures to his collection. 😊

FAIL

I managed to have ten clean laundry baskets throughout the week so yay me!!! I have four folded, three put away, and three to be folded. I’m totally owned by my bitch laundry. It’s just easier to light a match and walk away. Either that and walk around naked, I’d probably have to invent some creative excuse as to why I was. 😉

I wish I had this sink , I’d spend a lot more time in my laundry room. 😉🍷

FEAT

I was brave this week I stood up for my beliefs and didn’t allow the professionals to dictate to me what I was thinking or saying. I resisted the urge to throat punch bitches, and pushed back when I felt cornered. I crossed my hurdle and started seeing a therapist. I wrote from my heart even though it pained me. It was for the #1000 speak compassion movement called building from bullying. I verbally puked that story out of me as I wrote about my experience of being bullied for a year in high school. I’ve been so fortunate to have it published on the http://www.originalbunkerpunks.com. And my lovely friend bought me a t-shirt to celebrate. I made some new friends and connected with old ones. If you look up in the dictionary for the definition of brave you’ll find my picture. I’ve also been blessed to be nominated for the One Lovely Blog Award from the fabulous https://one mothertoanother.com.  I also guest blogged for https://happylifeaholic.com. My 1000 speak story can be read here 

http://wp.me/p46h5g-kO

My guest post can be read here

https://happylifeaholic.wordpress.com/2015/03/24/thl-guest-post-jeanine-lebsack-my-pursuit-of-happiness/

 

Rocking my new OBP t-shirt. 😃❤️

FAIL

I’ve been fortunate to be co-host this segment Friday’s Feats and Fails recently with the lovely http://www.morethancheeseandbeer.com. And my big fail is not getting my link up in time and to share and promote within social media. I have no excuse but to say I got so busy with trying to complete a book review project, planning my Mad dog’s birthday party, and ran out of time and sleep doing all the above!!! I haven’t been a very good sister and I’ve needed to make apologies for that. I’ve judged a friend harshly for the decisions she’s made, and with zero patience left in my bucket I’ve yelled at my kids, husband, and anyone else who pissed me off.😣

FEAT

 I took a personal day on Wednesday and read all day. I of course parented and enjoyed myself immensely. I need to have more days like that. I was reading the sequel anthology to I just want to pee alone. Oh my sides still ache from laughing and my eyes are red and swollen from crying. Funny, touching, hilarious, and a much needed feel good book. You can read my reviews over at Amazon and Barnes & Noble. Special thanks to the awesome http://www.tracyontherocks.com who’s featured in this fabulous book for this wonderful opportunity. Please check out her latest blog post that has the links to all of the lovely Jen Mann books. 😘❤️

 

I want to be in the next group with these amazing, funny, talented, group of writers! I’m fangirl crushing on all of them. ❤️


*Update*

My cousin and her family have been home from the hospital for a week tomorrow. Amazing Grace has been growing well, putting on weight, catching up on sleep, and doing so incredible. Thank you to everyone for sharing/contributing to the Go fund me. All the proceeds will go to providing whatever services, and baby supplies that Grace will needed. And thank you to everyone for all your prayers and support. My family is so grateful for all the kindness bestowed on their precious baby girl. 💖

It’s link up time tell me how your week was. 💞

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Heal

There are so many parts of me that need to heal. My heart which isn’t as broken as I thought, but cracked and held together with glue and a band aid. My mind which I’ve allowed to overpower me with negative thoughts, and guilt.

My body which hasn’t been the same since my back injury so long ago brought on by grieving for my dear Dad, and saving my son from a near drowning.

My soul which when it’s my time to meet God and enter the Kingdom of heaven, that I will have absolved all my sins and righted my wrongs. I know I was put on this earth for a great reason.

I’ve spent years trying to figure that out as I was a very introspective child. I was hear to speak, sing, and write my truth. I feel this burning passion inside me to write my book of survival, to help people discover their truth, and to make a difference in the world. Ever since I was a little girl I wanted to be an entertainer.

I spent countless hours writing after school, stories, songs, poems, and plays. Literature fascinated me as I could dive into my books and get lost for hours. When my parents ended their twenty-four year marriage after raising six children, and myself being the last one I felt immense guilt over it. So why should a precious, precocious, little girl of four years old feel such a trip.

I just thought if I was better they would’ve stayed together. I didn’t sleep a lot as a child, I had visions and spirit visitors that needed to be near me. It never scared me it just was natural to me. I stayed up late a lot of nights with my Mom watching black and white movies in the dark. I thought it I could just go to sleep without anyone invading my dreams then my parents would’ve had a better marriage.

I wish I didn’t lay awake at night hearing the screaming, crying, doors slamming and the sound of a body falling to the floor. But I did I heard all of it, and I never told a soul. Well a living breathing one that is, I need to heal from this childhood trauma. It wasn’t my fault that my parents marriage ended.

They had a lot of love for each other, but over the years the respect was gone. My Dad as dear as he was to me, checked out a long time ago. He was there in body but in spirit he was on another planet.

By the time he was forty-five he had six children. He told me he always wanted a big family, being the oldest of seven he didn’t know any different. And my Mom being an only child felt lonely a lot, and prayed to find someone to love and have a big family.

And so these two star crossed lovers were destined to meet, create a family, and not last. I need to heal from their love story ending. It’s what I based my whole life upon a strong relationship, effective communication, and mutual love and respect.

They had it all at one time but unfortunately it wasn’t enough. I tried so hard to be better, and for a while there I thought I was going to heal. Then my Dad moved in with his girlfriend and took on another family. I knew that was the beginning of the end for me. I would not, could not accept that this was his new life.

So I fought furiously and bitterly and wrote story after story of becoming the heroine of my words. Saving everyone from the crashing and burning. I was only four years old so what could I do?

I need to heal from the pain, guilt, and suffering I’ve put myself through. It can never be too late to heal my inner child, treat her with kindness, and let her blossom with beauty and kindness and release her on gossamer wings to finally be free.

This has been my submission to http://Lindaghill.com Saturday Stream of consciousness. Please see what her beautiful brain wrote, and all the other talent that link up. Thank you for being here today. ❤️

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