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. ā¤ļø

Fridays Feats and Fails

It’s Friday one day closer to the weekend and wow what a week it’s been!!! I’m excited to share it with you. So let’s get to it shall we? I’m so happy and honoured to be co-hosting Friday’s Feats and Fails with the awesome Ash from http://www.morethancheeseandbeer. This is a new adventure for me so I feel giddy with excitement. šŸ˜ƒšŸŽ‰šŸ’ƒ

FEAT-Amazing Grace

My beautiful cousin brought her baby into the world and I haven’t stopped crying since! Amazing Grace was diagnosed in utero as having mosaic triploidy. According to Wikipedia.org research Triploid syndrome is an extremely rare chromosomal disorder. Individuals with triploid syndrome have three of every chromosome, i.e. a total of sixty-nine rather than the normal forty-six chromosomes. There are only sixty recorded cases across the world. Thanks to the research I found on http://www.mommiesofmiracles.com I’m understanding a lot more. These children are blessings, and although there genetically different abled, they are beautiful gifts to the world. 

A Mother’s Love šŸ’—

Amazing Grace was brought into the world on Tues, March. 10 th at 6:04 am she had a healthy delivery and Mom and baby have been doing well. Grace had a defect with her heart diagnosed in utero and no one has known how long she would be earth side. After receiving a heart scan yesterday my cousin was happy to report this morning, that there are NO signs of the defect!!! God is creating miracles for my family daily as Amazing Grace has been defeating the odds against her since her conception. Just yesterday she opened up her eyes for the first time her Uncle held her. Oh and what a beautiful moment that was!  There has been an amazing photographer that has been capturing Grace’s journey with her Mom and Dad. All images are by Love by Krista Evans Photography and she and my cousin have allowed me to share them with you today. šŸ’•

A Father’s Love ā¤ļø

I read all the updates eagerly each moment that my cousin posts them. Today Grace will have a brain scan as she was also diagnosed with agenisus of corpus callosum. According to research from Wikipedia.org (ACC) is a rare birth defect (congenital disorder) in which there is a complete or partial absence of the corpus callosum. It occurs when the corpus callosum, the band of white matter connecting the two hemispheres in the brain, fails to develop normally, typically during pregnancy. 

Amazing Grace is being tested and evaluated in preparation to going home! She’s  classified as a strong baby, despite the disorders and her early arrival of eight days before her due date. The amount of love and prayers that are surrounding Grace and her parents is incredible! Thanks to Krista at Love by Krista Evans Photography 12,000 people have seen my family’s pictures. To me that means that 12,000 people are joining in prayer power! You can view Krista’s amazing body of work here:

https://www.facebook.com/lovebykristaevansphotography


The love, pride, and powerful energy emanating from this family fills my heart to the brim. šŸ’–

FAIL

I’ve been keeping as positive as I can considering how precious life really is. And my own son has to undergo genetic testing for Fragile X and ASD. According to Wikipedia.org Fragile X  is a genetic syndrome. Nearly half of all children with fragile X syndrome meet the criteria for a diagnosis of autism.[1] It is an inherited cause of intellectual disability especially among boys. It results in a spectrum of intellectual disabilities ranging from mild to severe as well as physical characteristics. I’ve had my moments when I’ve dissolved into tears, yelled, cursed, and locked myself away in my pity party of one.

My incredible family has shown me I can have those moments but I just can’t unpack and live there. So other than not cleaning since last weekend, not keeping up with folding my laundry as that relentless bitch is owning me. I’ve been enjoying the sunshine, adventuring with my kids, and counting my blessings. And really appreciating the miracles in life like Amazing Grace’s journey with her phenomenal parents. The strength they’ve shown has been remarkable. In my cousins words to prepare for a life half way through pregnancy, then a possible death, back to preparing for her baby’s life is an extraordinary blessing. I know God will continue to watch over and bless them as they are all miracles of the heart.  šŸ’ž

Amazing Grace.šŸ’–

FEAT

My Captain’s hockey play off round ended for him last Saturday. It was a disappointing loss with some questionable referee calls that ended in a 2-1 loss. It was an exciting game, but I’ll be honest and say this part of being a hockey Mom really sucks. It was so hard to see those disappointed expressions on those sweet children’s faces. They played a great game though and they still have their practices, parents against the kids game, and windup party to look forward too. It was Father son time the next day as my husband took our Captain to work. They both looked so handsome as they dressed up in a shirt and tie. I haven’t seen my son dressed up since his first communion last year. It struck me how fast he’s growing up! I’m so proud of his accomplishments on and off the ice. ā¤ļø

I have so much pride for my Captain and his team. šŸ˜ƒ

We also had a major accomplishment as my little Mad dog and I attended the play group specifically for children with special needs. He loved it there as it was fun and manageable with a small group of kids. The most touching moment was when my son thanked me for his happy. I was in awe of him and his gift of understanding in the moment. After the group we attended the indoor playground and he did very well being around more children and some noise. We were both happy to nap when we got home. šŸ˜“

“Thank you for my happy Mommy.”

So here we are back to Friday and since our Netflix is M.I.A. due to Mad dog resetting all the information we’ll be watching movies. My wonderful husband picked up Night at the Museum for family movie night and Mocking Jay Part 1 for after they go to bed. Thank you for being here today and please check out everyone else’s post who links up today. šŸ’•

That’s my Friday’s Feats and Fails how’s your week been?

This is going to be an amazing weekend of watching the currents and the classics. šŸ˜ƒšŸŽ‰


It’s link up time! Don’t mind the HTML code I couldn’t convert it back to text just click on the link below that say inlinkz. šŸ˜‰

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Writer’s Quote Wednesday’sĀ 

ļ»æļ»æ

Amazing Grace came into the world so precious and sweet. 

Loved already with great devotion and adoration. 

With these beautiful curls and teeny, tiny, little, feet. 

I witnessed a Mother’s love, a Father’s pride as they held her skin to skin. 

And family was to be wrapped up in joy with this little gift. 

Not knowing how long she’d be earth side, each day is a win. 

I look at these beautiful images, and they give my heart a lift.  

I play them over and over again feeling the tenderness in my heart and mind.

Amazing Grace you’re the greatest blessing the world could ever find. šŸ’—

I wrote this for my beautiful cousin who gave birth to her amazing Grace just this week. She was born with a genetic condition called mosaic triploidy. It’s not certain how long this little blessing will have on the earth. One thing I know it will be filled with so much love, that her little heart can hold. This is my submission to http://silverthreading.com for Writer’s Quote Wednesday. Please check out all the talent who link up. Thank you. šŸ’•

*Image used with permission from my cousin and Love By Krista Evans Photography. Special thanks to them both for allowing me to share this journey.*

You can check out her amazing body of work at https://www.facebook.com/lovebykristaevansphotography

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