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 www.morethancheeseandbeer. This is a new adventure for me so I feel giddy with excitement. ???
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 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.
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. ?
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:
The love, pride, and powerful energy emanating from this family fills my heart to the brim. ?
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. 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. ?
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. ❤️
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. ?
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. ?
That’s my Friday’s Feats and Fails how’s your week been?
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. ?
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12 thoughts on “Fridays Feats and Fails”
This really hit me hard tonight, as I just got off the phone with our doctor a few hours ago about a worry she has after reading our latest ultrasound. I won’t get into it here because it’s not the forum, but suffice to say, I feel for both you and your cousins as you all worry and wonder about your precious children’s health. There is nothing more sacred on this earth than our sweet babies and it’s so much harder to shoulder the worries about them than really anything else I can think of. I will continue to pray for you and your boys as well as beautiful Grace.
I agree honey nothing more sacred then our children’s well being. Thank you so much for your prayers. I will join you in prayer for your sweet baby as well. I’m here if you’d like to talk privately. Love and hugs amazing Mama. ❤️
So many blessings to be thankful for! I am glad that your “fail” isn’t really a fail. You have a wonderful outlook and lots of love surrounding you…it is obvious that you welcome all that love by giving it away. Thank you for sharing your week with us! Please keep us posted on Amazing Grace’s journey.
Thank you Tracy there are times I fail at the positivity but something or someone always puts things into perspective, and puts me back on track again. Thank you for reading and your lovely compliment. I will keep you updated on Amazing Grace. She’s changing lives with her gift of love and fighting spirit. ?
Thank you for sharing about Amazing Grace, and also about the power of prayer. Such a rare disorder Amazing Grace has, I am adding my prayers to the 12,000 plus.
Thank you for sharing!
You’re welcome Carl, thank you so much for reading and keep Amazing Grace in your prayers. ❤️
I am and will continue to do this. My privilege.
I appreciate and value your kindness my dear friend. ?
With the entry Amazing Grace into the world, that’s three births I have been associated with this week. Unfortunately, with all the concerns we had for baby Freya in the first day of her life and the fact that the other was 200 miles away, the birth of baby Lucien got sidelined a bit. It is good to say that all is well and glad to hear the same for Grace.
When my son’s soccer team had a similar disappointing loss when he was 9, I remembered a line from a movie. Actually it was Love Story and it was when Ryan O’Neil’s hockey team loses. The father said, “I didn’t come to see your team win, I came to watch you play.” That worked for my son, especially after I told him how well he did.
Oh how blessed you are to have all that wonderful baby energy around you! Babies are just so pure when they come into the world. I love those names Freya and Lucien, very unique like my own kids. I love that line from Love Story. I haven’t seen that movie in such a long time. I will pull out the book so I can read it and commit it to memory. Thank you so much for your kindness my sweet friend. ?
My pleasure as always 🙂
Thank you so much Mike. ?