Thank you to all who have participated in the book give-away and read all 12 preceding posts. I received over 20 entries and Alex will be picking three names which we will announce on October 31st. Also – in that post we will share another way to get a complimentary copy of our book!
In honor of Down syndrome awareness month I will be publishing excerpts from “From Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome” for 12 days. Each day features a different verb/chapter and at the end of the month we will give-away three copies of the book, signed by Alex. Priceless!
I wrote, "From Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome" to share this story of love, life, magic and down syndrome. Our critically acclaimed book details our journey through ten verbs beginning with grief, ending with plan and incorporating one bonus verb, celebrate. I hope this can be a resource to help others embrace, understand and learn. The book is available through this blog ($12.50) on-line booksellers ($13.99) and kindle (reduced to $3.99 during October).
Bonus Verb – Celebrate
We celebrate the pure joy of Alex, our beautiful daughter, sister, granddaughter, niece, cousin, student and friend who continues to enrich our lives in unimaginable and immeasurable ways. Her very existence has given us the power to become better people and more empathetic community members.
We have met tremendous children with special needs and their families, as well as scores of remarkable adults with special needs. We have had the good fortune to work with caring and skilled professionals because of Alex, who has Down syndrome. We celebrate her life as a gift and privilege to so many people in so many ways.
Alex teaches us not to sweat the small stuff, to take our lives one day at a time, all the while enjoying the present and the passage of time. Of course there are challenges in Alex’s life as well as ours, but we do our best to pick the moment each day that is worthy of a celebration instead of cursing the darker ones. We never have to look too far to find a lesson learned through or from Alex. And in that, we delight.
Families of special kids learn early on that their children don’t rush through life. Alex is no exception, her lack of urgency in everything has been apparent her whole life. She takes longer to get ready in the morning, longer with her meals, and her showers last forever. She enjoys picking out her clothes, savoring her food and the feeling of warm water on her body. She follows a simple philosophy: Why rush?
We make adjustments for Alex and give her extra time, but sometimes it’s still not enough. It doesn’t matter how long we give her because she always chugs along at her own speed. We call this “Stop and Smell the Roses syndrome.”
While we have frustrating moments trying to get Alex to move along at our speed, we’ve also learned to celebrate the journey of life along the way. She has literally reminded us that roses are worth stopping for; we admire their beauty and smell their sweet perfume. Her speed can either elevate or alleviate our stress levels; it’s up to us which way it’ll go at any given moment. No one wants to be late, but how worth it is it to get stressed out over a delayed minute here and there? Sometimes it’s worth it to admire a cute baby passing by in a stroller for an extra moment, or spend a few more minutes giggling at the comics in the paper. We celebrate that reminder.
Alex is also the one who wants to spend the time to have family game night. She cherishes whatever moments we can all spend together, and supports us in our individual pursuits as much as we do in hers. She’s in the front row at each of her sister’s plays, bundled up on the slopes for all of her brother’s snowboard competitions, her face beaming with pride each and every time. She begs John for special father-daughter time, and relishes their time together, no matter the activity. She even comes to every one of my tennis matches, celebrating my winning points as well as those of my opponents, even though I cannot imagine anything more tedious.
Alex doesn’t rush through life, nor does she waste a moment. She’s the most magical, loyal and truest person I know. Alex’s hugs or the bestowal of her beautiful smile brighten my days and my heart. She is the sunshine our lives — mine, John’s, Courtney’s and Tom’s.
In many ways, I feel like the guardian of this extraordinary individual, the steward of her life, the protector of her magic. Every day I thank the universe for giving us Alex. I don’t know why we’ve been so lucky, but I do know she has taught me an extraordinary lesson that I am obligated to celebrate and share. I go back to the second verse of my healing song, “I see skies of blue and clouds of white, the bright blessed day, the dark sacred night, and I think to myself what a wonderful world”.
Perhaps I’m a Pollyanna, and if so, I am extraordinarily grateful. I strive every day to make the world a better place for my family and all children with special needs. The process to get where I am today might have been through baby steps, and my ability to bring our lessons to others through even tinier steps, but I believe I have and can continue to make a difference to so many others through telling Alex’s story.
In the end, Alex has helped us recognize we need to listen to her and the universe she has opened up wide to all of us. And in case we forget, she always has the final word — literally. At night, we always share the same exchange:
Alex: “I love you.”
Me: “I love you more.”
Alex: “I love you best.”
Me: “I love you bestest.”
Alex: “I love you est.”
Me: “I love you er.”
Alex: “Mom, that is not a word.”
There really is a lesson of celebration in this for all of us.
To read more please enter our give-away on this last day:
These are only two requirements to be entered in the drawing - and Alex will pick the winner!
1. Please like "The Ordinary Life of an Extraordinary Girl" on facebook (link on the sidebar), or
2. Follow this blog, on networked blogs (also on sidebar)
Of course, you will need to tell me you did this, either as a comment or by e-mail firstname.lastname@example.org .
Stay tuned for more…31 for 21!