March is an "extra" special month

We love the month of March for many reasons but at the top of the list is the countdown to March 21st which is significant in the Down syndrome community because we celebrate World Down Syndrome Day on this day. The significance is that our children are born with 3 copies of the 21st chromosome. As we countdown to this we do what we do everyday, we celebrate our beautiful and amazing children. Showing the world they are capable of much more than in the past they have been given credit for. Our children are not to be written off, thought of as unworthy or even ignored.  They are here to teach, show love and most of all be an important part of the world we live in. They deserve that chance! 

One of the things also highlighted this month, on March 5, was the official day to spread the word to end the "r-word" and teach others that it is not alright to use this dehumanizing word which many use daily incorrectly. Don't know what the "r-word" is please visit this page http://www.r-word.org/

In recognition of this day and this campaign check out this link to view an amazing video created that shows Lucas and many of our friends in. This is a very powerful message filled with beautiful imagery.  I can't help but to feel proud that my son is part of this movement to change the way people think.  Way to go!


Spread the Word to End the Word!
 

It takes a village

When we received the news that our son Lucas would be born with Down syndrome it felt like our world ended and every dream we had for our unborn baby was shattered in an instant. All because he would have 3 copies of the 21^st chromosome.  I remember feeling like I couldn’t breathe as a stream of tears endlessly raced down my face.  I still recall how small and alone I felt that day.  As I sit here today writing I see how much I have grown and my life has changed, for the better, because I have a child with Down syndrome.  I don’t have a life of sadness or regret but instead a full life of beauty and love beyond comprehension. 

One of the beauties in my life are the friends I have made on this journey who I now refer to as my family, my village.  The bonds which began through our children have grown into a strong support group of women who rely on each other for advice, understanding, friendship and most of all strength.  That’s why when one of us is in need we all stand tall for the one that needs comfort and care without hesitation.

Tonight, one of our little ones Annie Wojtowich is fighting for her life after open heart surgery and several complications that have impacted her recovery process.  Her parents, Arek and Monika, have been by her side since the surgery on February 10, 2014 and have most recently been trading shifts amongst themselves to also be home with their two other daughters Kelly and Nicole.  Annie’s health issues are complex and have been present since her birth on May 22, 2012.   She was born with Down syndrome and a congenital heart defect (Unbalanced AV Canal) and had her first open heart surgery procedure at 1 month old.  In addition, Annie’s heart stopped working for 7 minutes when she was 2 months old it was discovered she had Pulmonary Hypertension making her heart unable to be fixed.  The most recent heart surgery Annie had is an attempt to give her the best quality of life with the heart she currently has.    

This has been trying and extremely difficult on Annie’s parents so as a result our mom support group has put together a fundraiser to help the family with medical costs during their time of need.  It is our hope that sweet Annie soon be home with her family where she belongs.  We have faith that she will soon be able to put this behind her.

I think I speak for all the mom’s in my support group when I say we would do anything for Annie and love her as if she were our own daughter.  We are desperately trying to help Annie and her family in any way we can because that’s what family does.  

You can follow Annie’s story on Facebook at “Annie Golden Heart” and you can join our fundraising efforts at https://fundrazr.com/campaigns/8hdP8 to help this beautiful little girl.