Showing posts with label Children with Disabilities. Show all posts
Showing posts with label Children with Disabilities. Show all posts

Friday

A Little Insight... Down Syndrome Awareness


October is Down Syndrome Awareness Month. To promote that awareness and celebrate the abilities of all people who have Down syndrome, here are some facts and figures for you:

Down syndrome is the most common chromosomal disorder. 1 in every 800 babies is born with Down syndrome.

There are more than 400,000 people living with Down syndrome in the United States.

Life expectancy for people with Down syndrome has increased from 25 years in 1983 to over 60 years today.

Most people who have Down syndrome have IQ's that fall in the mild to moderate range of intellectual disability. Researchers and educators are still discovering the full educational potential of people who have Down syndrome.

(info courtesy of the National Down Syndrome Society at http://www.ndss.org/)

Buddy Walks, celebrations to promote Down Syndrome awareness, will be held near your area from the end of September through October. Bringing your family to a Buddy Walk is a great way to surround them with people of all abilities and to start a dialogue with them about differences and abilities. To find a Buddy Walk near you, go to http://www.buddywalk.org/.

I am leaving you with my favorite video called Dreams. Just click on the title. When you watch it, imagine my 8 year old daughter in it. The Love Magnet would tell you that she wants to go to college to become a teacher's aide. And swim with dolphins. And compete in Special Olympics. And be on So You Think You Can Dance......

Tuesday

A Little Inspiration... Why I Love Being a Mom

by Somer
Five years ago I was leading a very different life. Five years ago has so much to do with who I am now. There is so much beauty in the little things. There is so much love to be had.

Five years ago I learned that there is physical pain when your heart breaks. I learned that strength can be found where you didn't know it existed. I learned that babies aren't always brought to their Momma's arms to be held and loved when they first come into the world.

Five years ago I learned that health is a gift. I learned that love can create miracles. I learned that many people will do much for a stranger. And that even more will do all for a friend. I learned that when you have been sleeping in a chair for a couple of nights post labor, you may want to write down that you took a sleeping pill so you don't forget and take another. I learned that two sleeping pills can seem like bells palsy.

Five years ago I learned that with love, I could will a little person to live. I learned about priorities, balance, touch therapy, anatomy, and how to read a ventilator. I learned about cardiologists, pulmonologists, cardio-thoracic surgeons, ENTs, infectious disease doctors, fellowships, residencies, nurses, nurse practitioners, interventional radiologists, gastroenterologists, nuerologists, and respiritory therapists. I learned that no one would watch my baby as closely as I would, no matter how much they cared. But I also learned who I could trust to watch almost as closely.

Five years ago I learned that even though my life had changed, even though taking my third daughter home wasn't what I had planned, even though, while my world had stopped, others lives were still moving along, and that what I had been given was every bit as wonderful as what they had been given. Even though I might mourn the loss of what might have been, I still love what is.

I'm okay with questions about feeding tubes or tracheostomy. I love to share some stories of the miracles we saw. I don't mind the stares, just don't frown when you do stare, because my life makes me smile.

Five years ago I was taken away from the life I had. I moved four hours from my husband and two children. I had a small dormitory room and then a little apartment, along with a house I couldn't visit. I sat in a hospital room watching a baby too small to understand look at me with total understanding. I held a hand that should have held a rattle and stroked a foot that should have been kicking off socks. Where I wanted to see bows I saw IVs. And through it I learned to love the life I had been given. To appreciate the wonderful gift of the simple things.

And now, even though I am clapping for a five-year-old because she ate a whole container of yogurt. I love it. My back may hurt at the end of the day, but I am so blessed to be able to get through the day and carry my thirty-plus pound girl where she needs to go. And I don't think I would smile at the antics of a three-year-old if I didn't know how lucky I am that he can do that. Or appreciate the screams of delight if I hadn't known the silence. So, five year ago I learned a lot of new things, but mostly I learned how much I love being a mom.

Sunday

A Little Inspiration... Creating the Year 2010

by Corinne
In our house, we are big big fans of Baby Signing Time, created by Rachel DeAzevedo Coleman.  Katie (our A Little Great music contributor) recently turned me on to Rachel's blog.
 
photo www.stylecafemoms.com

I was moved by this inspirational post by Rachel, and got her permission to link to it here (I'll also post it below for those of you who prefer not to outclick!)  Rachel is the mother of two disabled children, and writes a very candid and moving post about how having disabled children can affect your marriage (as can having any children at all, really), and how sensitive and in tune our children are to the tenor of our marriage.  She uses this story as a frame to inspire us to make 2010 the year we really want it to be.  I mean if she can do it, what excuse do the rest of us have?  Since today is the last day of January in 2010... it is time to really get going on our resolutions.  Let's make 2010 the "Year of No More Somedays," inspired by a great and talented woman, Rachel.

Thank you Rachel.  And thanks Lucy, Leah, and Aaron too.  Thanks for inspiring us all.

Here it is:  Creating The Year 2010, by Rachel Coleman
(Do yourself a favor today and read the whole thing!  Click "read more" below if you want to read it all here)



Creating The Year 2010
Every year, especially around the time of my wedding anniversary, I hear comments about how X percentage of couples that have one child with a disability, get divorced. And how Aaron and I have truly beaten the odds by having a marriage survive this long with both of our children having disabilities.

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