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Saturday, March 3, 2012

March is Trisomy Awareness Month!

Rebekah started out Trisomy Awareness Month with two accomplishments! First, she is one of the featured Toby's Kids on the Passy-Muir company website. Rebekah wears a Passy-Muir Speaking Valve which allows her to talk despite having a trach. She also learned something new and very special. When told, "Give me a kiss!", she will now turn her head toward you and give you a nice, slobbery kiss! Every now and then, she makes really funny fish lips trying, but it is mostly a closed lip peck right now. She will even kiss her stuffed animals!! Her nurse, Becky, got teary-eyed when I showed her.

Rebekah turning her head to give mommy a kiss!
Rebekah and I have have kicked off Trisomy Awareness month by trying to do as much local awareness as possible. My boys' school had Disability Awareness Week this week for the 3rd graders. I took Rebekah into the school and was able to share her story and some information about children with disabilities. Her brother, Jeremiah, was so proud when I brought her around to his classroom! He loved showing off her g-tube and trach, and wanted to talk about the SOFT conference we went to last summer in Chicago and how we will be going to St. Louis this summer for it. (SOFT is Support Organization For Trisomy)

Then this afternoon, we had the privilege of having 6 MUSC (Medical University of South Carolina) 3rd year med students/interns come to our house and meet Rebekah and her friend, Maddy, who has a 2q microdeletion. What a WONDERFUL opportunity to work with future doctors so that they can have more compassion and empathy for disabled patients! This is part of a program to give these future doctors some exposure to the disabled community, since most of their exposure will be with sick patients in a 'hostile' environment. I think these poor students got a little more education than they expected. Thanks to the Budd Zoo, they learned how loud and chaotic a house of 5 kids can be!
Maddy (2q microdeletion) and her Mommy, Alisa
Some of the future doctors!
Two more future doctors (holding Rebekah) in front of Jeremiah and Michelle from our local Family Connections group.  A big thanks to Michelle for getting us signed up for this program! We hope to see many more doctors!

This weekend, I will be hard at work on a trisomy awareness video for the nonprofits I am involved in: Hope for Trisomy 18 and 13 and Trisomy Advocacy Group. I am so excited because our video will have examples of trisomy kids from 2 to 22! Woo hoo!  Make sure you subscribe to our you tube channel so you don't miss it! 

Monday, I am attending a SC Department of Disability and Special Needs (DDSN) Stakeholder Meeting. Even though this isn't directly trisomy-related, it is directly related to services we receive from the state and I go representing Rebekah, and all children like her.

Next Wednesday, Rebekah and I are off to FL to celebrate a Trisomy Awareness gathering of friends, several of whom will be at Disney all week thanks to Make a Wish Foundation. We are praying we will get some media coverage for our event!  I am so excited to spend just a few days hanging out with Rebekah's trisomy friends!

Later this month, I will be working hard on a presentation application to the TASH Annual Conference. TASH is an international leader in disability advocacy fighting for human rights and inclusion for people with significant disabilities and support needs - those more vulnerable to segregation, abuse, neglect, and institutionalization.  If the project gets chosen, Rebekah and I will get a trip to CA in November!

Needless to say, I will be taking a mental break in April, and probably sleeping for a week!

To learn about all kinds of helpful resources for special needs children, and to see some of the beautiful children that span across all trisomies, please visit our facebook page: