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happy birthday emily ann

August 10, 2024 by Tina Leave a Comment

It was a day filled with giggles, happy smiles, BBQing with friends & a morning horseback ride at the Raise Your Dreams Farm.

Happy 9th Birthday Emily Ann!

 

Filed Under: c17, children at play Tagged With: birthday girl, chromosome 17q 21.31 microdeletion syndromekoolen deVries, chromosome 17q21.31 microdeletion syndrome, horseback riding, horseback therapy, kool kid, koolen syndrome, raise your dreams farm

two peas in a pod

May 23, 2024 by Tina Leave a Comment

Life is filled with many uncertainties for this sweet girl we call Emily….. but one thing is for CERTAIN….she has the best little sister ever.

Lily is almost 4 now and realizes that Emily needs a little extra help and she is always ready to hold her hand and help out.

A girl without her sister is like a bird without wings.

Filed Under: c17, children at play

about a quilt

August 7, 2024 by Tina 2 Comments

Earlier in the year, I started to browse through fabrics & patterns for a project I was dreaming up for Emily’s birthday present. Just when I thought I knew what I was making, I changed my mind. This happened more than once.

It needed to be something that jumped out at me. Something colorful and fun and happy. After all, you only turn 8 once.

So last week when Miss Kate was released early I had my answer. I would combine that with one of my all time favorite fabrics Ruby and make Emily a birthday quilt. It all made sense. It was exactly what I had pictured all this time & what perfect timing. Oh how I love when things like that happen. Don’t you?

As moms we are always wearing our super hero capes. We all have a multitude of things on our ever growing to do lists: cheerios to sweep up, jobs or work to take care of, sippie cups to fill, devotions to read, laundry to wash, friends to text, pantries to fill, etc. etc.

But this girl right here. Emily Ann. She is turning 8 on August 9th and I want to finish her birthday quilt no matter what it takes.

Why?

Because my daughter was born with a rare chromosome disorder, has speech apraxia and can’t talk, she has a seizure disorder and takes medication twice daily to help prevent them. Sometimes she struggles with her body because she has low muscle tone. She is globally developmentally delayed and gets nervous when taken out of her environment. She has a hole in her heart and only eats Cheez Its because she doesn’t like any other food touching her hands and mouth.

And because I want to make something special just for her.

She is amazing and beautiful and despite those struggles ….. wakes up every morning happy & looking for a reason to smile. I want my birthday girl to have a beautiful quilt to open on her special day. The day 8 years ago she came into our lives and began her mission to show us and othes what life is really all about.

I will make sure that happens. With my cape on….. of course.

Sincerely,

Emily’s mom

 

 

Filed Under: c17 Tagged With: chromosome deletion, quilting, special needs

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