Vince’s Journey with Down Syndrome

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Vince’s Journey with Down Syndrome Meet Vince (AKA Squish) born August 11th 2022. We had a prenatal diagnosis of Trisomy 21 and VSD.

20/10/2024

I am sorry if I can’t give all my family and friends my time…However, the story that’s being told you can not understand unless you live it like i do...this explains it…

You've changed...
I imagine having a typical child changes you.
But it's much different than the change that happens when you have a child with a disability.
Family members and friends who knew you before the birth of your child with a disability will comment on how you have changed.
And when you think about it, you know they are right.
How could you not change?
Your expectations change.
The vision of your child's future changes.
You begin the journey of acceptance.
You have to adjust to your new "normal".
The word "normal" starts to get on your nerves a bit.
You start celebrating, and I mean REALLY celebrating, milestones that people with typical kids take for granted.
You don't give up on your dreams for your child but your dreams definitely change.
You try not to compare your child with typical kids but sometimes it's so in-your-face that it's hard not to.
And then you realize that it has to stop.
It's not fair to your child and it's not fair to you.
You continue the journey of acceptance.
Accepting your child just as they are.
You begin to see the beauty in them more than ever before.
Their joy.
Their unconditional love.
Their perseverance.
Their determination.
You start to notice the things they CAN do
instead of focusing on what they haven't mastered yet.
You change.
You become a research fanatic, equipping yourself to be the best advocate possible
for your child.
Medical terms and educational terms you
had never heard before the change become everyday words to you.
When you see another parent of a differently abled child you feel drawn to them when you once would have walked right past without even noticing them.
You use words like "differently abled" instead of "special needs" or "mentally handicapped".
The word "re****ed" makes the hair on the
back of your neck stand up.
Even though you try not to let it bother you.
Even though you used the word yourself
before the change.
Even though people have labeled you "too sensitive" about it.
You can't help it.
You change.
And as you become aware of people who are prejudiced against your child you also become aware of your own prejudices
against others. Your own closed
mindedness comes to light.
You don't want to stay that way.
You soften.
You change.
Some of your old friends accept the change. Some don't.
They distance themselves.
Maybe they don't know what to say.
Maybe they just can't handle it all.
Whatever the reason, they are no longer around.
You make new friends.
Friends who get it.
Friends who become like family.
Friends who become your lifeline.
Me?
Yes.
I have changed.
I'm probably a little less flippant, a little more serious.
I find joy in the simple things and
beauty in places I would have never bothered to look before the change.
I avoid words like "tolerance" and embrace words like "acceptance".
I am committed to judge less and forgive more.
**Author Unknown**

***copied from a friend***

20/10/2024

💛💙💛💙💛💙💛💙💛💙💛💙💛💙💛
“For Down Syndrome Awareness Month, be aware of the Down syndrome momma. The momma that loves her child unconditionally but struggles from time to time with a life she didn’t expect or ask for. Nevertheless she is her child’s greatest protector, advocate and champion. She persists when the world tells her it just isn’t possible because she knows anything is possible when it comes to her child.
The Down syndrome momma’s heart softens to those around her that are different or in need while her spirit finds a strength and determination she never knew she had. She is exhausted mentally, emotionally and physically in a way she could never describe but still somehow finds the energy to advocate, write letters, read new research, try new therapies and schedule appointments all for her child.
Be mindful of the Down syndrome momma that keeps a smile on her face that hides her struggles. She doesn’t want your sorrow, pity or disingenuous comments, but she desperately wants your understanding, support and friendship. She finds it hard to balance celebrating the absolute joy her child brings her whilst admitting life with Down syndrome can be hard. Very hard.
The Down syndrome momma doesn’t want to change her child but she will do everything in her power to make sure the world changes for them.”
This Down Syndrome Awareness Month, take a moment to see the momma behind the child.
💛💙💛💙💛💙💛💙💛💙💛💙💛💙💛

In all seriousness being a special needs mama is completely different and unless your living it, atypical moms will never ever ever understand no matter how much they say they do. It is also the most rewarding thing in this world teaches you slow down and look at the world different. Than you see people for who they really are. I applaud all my fellow special needs mamas I see you and I know it feels lonely but we see you.

"Welcome to Holland. Meet your tour guide."

Sharing is Caring ❤️ There is no magic end to being a parent of a special needs child, but there is help, and hope, and ...
21/06/2024

Sharing is Caring ❤️ There is no magic end to being a parent of a special needs child, but there is help, and hope, and compassion from others who know your story. Join a group or call a friend when you’re struggling. Or just call me. I’m here for you too.

Special Needs Parents

Special needs parenting changes us entirely. There is no denying that. Because the truth is -- the first few years are going to pull you so far away from who you used to be that you won't even recognize yourself anymore.

You'll find yourself looking in a mirror, bags under your eyes, either heavier, or skinnier, and not recognize yourself. It looks and feels like you've aged a hundred years. Or maybe you are standing in a crowded room, feeling entirely isolated and alone, and wonder if you are invisible. You'll wonder how your world can be so different. How you can relate anymore.

It will challenge everything you know. You will question yourself. Your purpose. Your strength. You will wonder why. And how. Why my child? And not theirs.

It will challenge your marriage. Your health. The way you parent your other children. Even your decision to have more babies. Your career and finances. Relationships. And not just with people. With God too.

You will experience the greatest love on this earth. And simultaneously wonder how it can be so hard all the time. You'll get shamed for being sad. And for missing the almosts and the 'should be's.'

You'll see the unbelievable beauty that this world holds too. Almost like you've been granted access to a special club. One full of forever hugs, This Little Piggy, Santa and smiles. You'll celebrate milestones long after you should. And it will be amazing no matter when it happens.

You also see unbelievable cruelty. And it will take your breath away the first time it happens to you. To your child. You think you'll be prepared. That you'll come back with some witty, snappy comment. Only, you probably won't. You will try and shield them from evil. And then spend the next few sleepless nights wondering how you can live forever and change the world at the same time.

At first you'll feel like it's a race against time. Against their diagnosis. You'll do everything you possibly can. Your hope will be challenged. Then you'll find acceptance and realistic hope. Then you'll want time to stop. You'll want to keep their bodies small. Because the world is kinder to children.

You’ll have days where you swear you can’t do it anymore. Where you are certain it will never get any easier. That it’s going to be this challenging forever. You’ll almost be unable to picture a world where you stand still. Where you don’t have to fight for basic rights, inclusion and easy.

And then you will have the most unbelievable moments. A moment that makes everything worthwhile. Your child will shatter a goal, a milestone, something they have worked on for years. And you will know it’s going to be okay. Because you believe in this tiny human and know that they are worthy and capable and amazing.

You will live and breathe hope and acceptance and kindness. And you will be sewn together with strength and determination.

Yes, special needs parenting changes everything. It turns you inside out and upside down. But here is the secret that you have to learn on your own. It also puts you back together as the person you were meant to be.

That's the part that makes us lucky. ❤️

——author unknown

The Blue DressInspired by Emily Kingsley’s “Welcome to Holland”, dedicatedto all my prenatal diagnosis sisters, and, of ...
21/04/2024

The Blue Dress
Inspired by Emily Kingsley’s “Welcome to Holland”, dedicated
to all my prenatal diagnosis sisters, and, of course, Cade
As long as I can remember, I had been dreaming of wearing a silver dress. I’d watched countless women before me, all wearing their own special variations of the silver dress. I’d sit on the sidelines, watching, waiting for my turn, envisioning what it would be like for me. Sometimes, I would have a chance to hold one of these silver dresses when the other women weren’t wearing them. The dresses were each precious, beautiful, silver, and perfect.
At night, I’d lay awake and think of how it would feel to hold my own silver dress in my hands someday, to feel its smooth satin fabric, and run my fingers over the intricate floral embroidery. The billowing tule skirt, layers upon layers of historical validity, ready to be mine. The tiny sparkling sequins flashing promises of sweet moments and bright futures. The little glass beads each holding a moment of great pride.
How I longed to have a silver dress of my own and wondered when it would be my turn.
At last, one morning, there it was. My invitation. In nine months, I was finally going to wear the silver dress I’d been dreaming of. My heart overflowed with joy as I secretly celebrated this amazing gift I had just been given.
After weeks of waiting, each day more agonizingly long than the one before, it was my turn to find out more about my silver dress. Even though I wasn’t to wear it for months, this early reveal was to be a glorious moment and I could not stop smiling.
When I arrived, I was greeted with warmth and cheer. Everyone knew how lucky I was and what a joyful occasion this was to be. However, the mood quickly changed from one of jubilation to concern. Like a heavy dark curtain, the mood fell, hitting the floor like a forever closed door. With a cautious tone, I was delivered the news that my dress was not silver, it was probably going to be blue. Also, it most likely was going to be a different style, instead of the signature ball gown style of the silver dresses. It would not be satin, it might not have beautiful embroidery, glass beads, and sequins. At least not in the same places or the same amount. It might even have a hole that would need mending.
Hearing this news, I sat stunned, shattered. It was now dark behind that curtain. My hopes and dreams, once light and airy, were now heavy and weighted. I had never worn a blue dress, nor could I picture myself in one. I knew the ball gown style would fit me. I’d never worn any other style of dress. I’d seen a few women wear different colors and styles of dress from afar, but I never gave them or their dresses any further thought afterward.
Over the next six months, I tried to prepare myself to wear this blue dress. No one could give me any definitive answers on what my dress was going to be like. All I knew was that the satin and silver color were gone, and all those other beautiful perfect silver dresses I had seen my family and friends wear, my dress was going to be different. I was scared, the light was off, the curtain was drawn, and it was dark. I no longer pictured the silver dress. I didn’t know what to envision. So, where the silver dress once hung in my mind, now only a bare hanger remained, and in darkness, I waited.
During that time, I started seeking out the women in colored dresses. As I met them, I realized that there were a lot more of them than I previously thought. Each one had a different story and wore a slightly different color and style dress. Surprisingly, all of them loved their dresses and assured me that I would too. This seemed foreign to me, and although not convinced, it gave me hope. I clung to their stories and stared at pictures of them in their different dresses, smiling. I looked hard and long, straining to see my face in theirs as I tried to picture myself wearing a dress like theirs.
At last, it was time for me to see my blue dress for the first time. Now, I had no choice but to put it on.
With a mix of fear and anticipation, I finally was able to lay eyes on my dress sitting across the room from me. Even in the darkness, my dress shimmered back at me. I could see that the blue color was more like a robin's egg blue, it reminded me of spring and rebirth. The blue matched my eyes. I reached out and touched its fabric, silk, both delicate and rich. The dress was not a ball gown style but a sheath, clinging to the hanger, draping beautifully off the shoulders. Delicate embroidery kissed the neckline and below the bodice. True, it was not in the same places as the silver dresses, but it took my breath away. It did have beads and sequins, but they were in different places, they were perfectly placed, and they twinkled back at me as if smiling, ready to reveal a great secret.
As I slowly stepped into my dress for the first time, the curtain fell and the sun beamed. The darkness scattered. My dress was magnificent. It fit me perfectly and it radiated light. It did have a tiny hole, but that was quickly stitched up. In the process, I learned that all dresses can come with holes, no matter the color.
Instead of a generous skirt covered with layers of silver tulle, my blue dress clung to my frame, revealing my true shape. Parts of me that were hidden now revealed. My dress was unashamed and unapologetic.
I had never felt more comfortable and beautiful at the same time. I was exposed. It was authentic, empowering, and raw. This dress was made for me. A special one-of-a-kind gift, it instantly became treasured.
Everyone loved my blue dress, and it drew attention wherever I went. I had to be ready to stand out, take ownership of this different dress, and I did. People marveled at the dress’s simple elegance. It didn’t scratch or poke in the same places as the silver dresses. People wanted to hold it, to touch it, the silk fabric was so soft. Because of its silhouette, my movements in it were slightly different, my gait slower but more distinct, more confident, it added to the dresses appeal.
The blue dress changed me. In the places I was weak, to wear this dress, I had to be strong. When the darkness scattered, so did the shadows lurking deep within my crevices, questioning and doubtful. I had greatly underestimated who I was and who I was meant to be.
I was grateful and humbled. I was proud. As I walked through life in my blue dress the women in silver dresses and the other colored dresses celebrated me. Everyone’s dress occasionally needed mending, some in different places than others, but in that way, my blue dress and the silver dresses were the same. A dress was always a dress. This tribe of women in other colored dresses was small but vibrant, fierce, and loyal. It was a secret club, and the blue dress was my ticket-in. Anything I aspired to be; I could become.
With time, I slowly found that it was easier to be extraordinary when I was a shining blue light in a sea of silver. The blue dress was not a limitation, but an invitation for transformation. All you must do is be willing to step in and see where a dress different from the rest will take you.
- Megan Uotila

For all my mommy friends
06/04/2024

For all my mommy friends

Since Target launched its annual car seat trade in program, the retail giant has recycled over 2.6 million car seats amounting to 39 million pounds.

This is a dear friends sweet girl, Shelby. She is part of our baby friends group and such a sweet little one. She was re...
26/03/2024

This is a dear friends sweet girl, Shelby. She is part of our baby friends group and such a sweet little one. She was recently diagnosed with AML Leukemia 10 days before her second birthday. They are looking at a long road of hospital stays, treatments, chemo, etc. Anything helps for her mama. Julie is a hard working, single mom. If you can't help, please share.

Our friend and sister, Julie Haase, is in dire need of our help to care for her … Jessica Coy needs your support for Help Shelby Battle Leukemia

Sunday church day shenanigans 💜💜💜
24/03/2024

Sunday church day shenanigans 💜💜💜

Tomorrow is   !!! World Down Syndrome Day celebrates kiddos and adults like our favorite little man. He was born with 3 ...
21/03/2024

Tomorrow is !!! World Down Syndrome Day celebrates kiddos and adults like our favorite little man. He was born with 3 copies of his 21st chromosome! That's why we celebrate World Down Syndrome Day on 3/21! Wear your crazy socks tomorrow! Make sure to send me a picture of them for this year's video!

Tomorrow is the Day! WORLD DOWN SYNDROME DAY! Remember to Rock your socks!! Tag me in your photos or send them to me! I'...
20/03/2024

Tomorrow is the Day! WORLD DOWN SYNDROME DAY! Remember to Rock your socks!! Tag me in your photos or send them to me! I'm hoping to make a little picture video together of all the crazy socks 💛💙💛💙

Please share this with your friends to get as many as we can! :)

A bit of a long read but, oh so worth it. Welcome To Holland I am often asked to describe the experience of raising a ch...
19/03/2024

A bit of a long read but, oh so worth it.

Welcome To Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c1987 by Emily Perl Kingsley. All rights reserved.

Calling all prayer warriors. This little girl and her mama Julie need all of your prayers. Sweet little Shelby was diagn...
19/03/2024

Calling all prayer warriors. This little girl and her mama Julie need all of your prayers. Sweet little Shelby was diagnosed with AML Leukemia. Pray for strength and pray for peace. We love you sweet girl and we are here for you. 💙💛💙💛💙💛

Join us on Match 21st! Where your most fun socks! Make sure to send me pictures of the funky socks so I can put them in ...
15/03/2024

Join us on Match 21st! Where your most fun socks! Make sure to send me pictures of the funky socks so I can put them in the video to commemorate 2024 World Down Syndrome Day!!!

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