Friday, August 13, 2010

The Buddy Walk



Why do I walk?  The obvious and easy answer to this is that our family walks to show support for our daughter and all individuals with Down Syndrome.  We walk to raise awareness and to raise money.


The need to raise money is obvious.  More complicated are the questions what does it mean to "show support", "raise awareness" and why is this important to me?


This is important to me because the second my 6 year old daughter Jane was born, I knew deep in my bones that she had Down Syndrome.  I knew this before she was examined, before she was tested, and tested and tested.  I knew this before my doctor, husband, family and friends knew.  I also knew, just as surely, that I instantly loved her with all my heart and I would do anything for her.


The very night she was born, her father and I made a vow then and there.  We told each other that we would give her everything humanly possible to help and support her.  Doug made one request - he told me that when I was weak he would be strong and when he was weak I would need to be strong for him.  Over the next 4 days that followed, we waited for the official test results to confirm what I already knew in my heart.


We were blessed with an amazing amount of love, support and prayers from our family and friends.  Around the time Jane turned 4 weeks old we started getting back into our usual activities.  Jane began to see the world and the world could see her.  We saw her as beautiful.  We saw her as strong.  We saw her as smart.  We saw her as perfect.


We have been so blessed in that, those around us have come to the same conclusion.  I am thankful that we are living in the year of 2010.  That the days of instant institutionalism, low expectations and shame are withering away.  There is research and documentation for common health issues, there is intervention and therapy to help in achieving milestones.  There is proven research in regard to the therapies that helped our Janie learn to walk and one day will teach her to talk.  Yet, this is expensive.  It is commonplace for insurance not to cover any of the therapies that Janie has received.  We have yet to meet another family who has been successful getting their insurance to pay for the therapies we have been blessed with.  


It is also common for children with disabilities to be segregated within the public school system and not allowed in the "regular" classrooms.  The reasons given are that it is too expensive, there are not enough teachers, not enough time, and that those who can "keep up" will be slowed down. 

Jane is a daughter, sister, grand daughter, cousin, niece and friend.  She has taught us so much and we are forever changed because we have her in our lives.  Recently, my oldest daughter Madison caught me off-guard and asked me what my chances of having a baby with Downs Syndrome were when I had her...hard to believe that a 9 year old would have such a question.  When I told her 1 in 800 she responded loudly - "Thank you Jesus!".....she was so excited that God chose us.



We walk for many reasons, but the core reason I walk is that I want the world to see my girl as I see her.  Beautiful, smart, strong and perfect. 


She is worth it - that is why we walk and are asking you to consider walking with us.  The link is below - walking with us and or making a small donation would go a long way.  Thank you for being there for us and please continue to pray for Janie and others with Down Syndrome. 


Jackie


6 comments:

  1. You are so precious to us Janie!
    Looking forward to the walk this year...still have our sign from last year. Praying for Sunshine.
    We love you!!!
    Tony,Di,Em,and Anna

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  2. What a Beautiful Blog! We are so fortunate to be apart of the Fans of Jane crew and great friends and neighbors~ We walk with great pride for you and all with Down Syndrome. A big Facione WHOOOOO HOOOOOO! Love-Hugs and Kisses
    Your Facione Fan Club!

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  3. Awesome! You are two of the luckiest parents I know to have been given such a beautiful little girl! All Our Love, The Yardleys

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  4. Dear Jackie,
    I saw this on Christie Facione's facebook. Our girls are in class together at Grant. Though I do not know you personally, I was compelled to write about my own family. I am the proud, blessed niece of my Aunt Dorothy, who was born in the late 1940s to my educator grandparents, who did not institutionalize but instead provided all manner of learning opportunities and helped to found the Woodlands Developmental Center in St. Clair County. My husband's cousin, Julie, is in her 50s now and is such a blessed addition to all family gatherings. My own two children 'love her best' of all, for her open gentleness and acceptance of them, just as they are. Both of these precious women have taught us so very much. Finally, last year, one of my students, whose sister has Down Syndrome, presented a report to the class about Down Syndrome, her sister and the progress she has made. Her beautiful little sister was her visual aid, and charmed our entire class of 5th graders and opened their eyes forever in the most important way. God bless your beautiful, inspiring daughter! Sincerely, Anne & Andy Sherwood

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  5. Janie & your entire family are a blessing to our family... Janie's precious smile, a hug, and now even more & more words!! We have a soft spot in our hearts for Jane, and we have been changed by Jane too, and we are grateful for sharing in the blessing of her life.

    Walk on & much love & blessings,
    Sylvia, Isabella, and Kelly Kissick

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  6. Just wanted you to know that I had a life changing moment yesterday...I am Jane's music teacher at Webster. During the beginning of class, I was working with the children to have them sing their names. For the first time I heard Jane sing hers! She brought tears to my eyes ~ and has absolutely confirmed my decision to teach. ~Sydnie Lyn Benson

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