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Showing posts with label Trisomy Advocacy Group. Show all posts
Showing posts with label Trisomy Advocacy Group. Show all posts

Sunday, January 8, 2012

Karen for First Lady!

Michael and I made plans to attend our first ever Republican Party even - a meet and greet dinner with Senator Santorum at a local restaurant. The thought came to me about an hour before we had to leave that I should give him a note with a picture of us with him from last year and an invitation to his wife to join our online community. Here's my short note. I included several of Rebekah's info cards and a picture of our family.

Dear Mr. Santorum,

We had the pleasure of meeting you at the SOFT Conference last summer in Chicago!

A group of us have started a nonprofit called Trisomy Advocacy Group – a group meant to educate and help parents advocate for their trisomy 18, 13, and any other trisomies not currently represented by a national organization. Like you, we have had our share of disappointing encounters with the medical community, despite our full trisomy 18 daughter being 32 months old. We would love to talk to Karen or you about it! We would also love to give Karen some trisomy support. We have a great moms group on facebook, and she could even join under a different name if she didn’t want the attention. I cannot tell you how much we have learned from our moms group and how it has helped us to be better advocates. God bless! We will be voting for you!

Michael and Susan Budd


I held a folded paper in my hand waiting for the opportunity to slip it into his hand when I had my chance to meet him as he made his way through the room greeting everyone there. We arrived 40 minutes before it was scheduled to start - good thing as he started speaking only a few minutes later. I would have to wait until after his speech to get my moment.

As I struggled admist the crowd to see Santorum as he spoke, I can honestly say I felt an amazing presence in the room. I believe this man to be a man of character, speaking words of truth - someone who can bring integrity back to the White House. There is no candidate that I agree with 100% on every issue, but I would take someone who I agree with on 90% of the topics and who I know would be true to their word. 

My excitement suddenly grew though!  I didn't expect to see his wife, Karen, standing next to him. For some unexplained reason, my eyes suddenly welled up with tears as I felt an inexplicable bond with this woman. The letter I wrote was really intended for Karen, but I didn't dream I would see her at this event since Rick was making his grassroots tour across the Upstate area of SC and visiting location after location every few hours. I was so excited! I could now give the letter to Karen directly!

The speech finished and I continued to push my way through the crowd waiting for my opportunity to get to the Senator. But as I got closer, I saw Karen was no longer by his side! My heart dropped. I asked a ady who had been standing there if she knew where Karen went. She said she heard her saying something about the bathroom.

So I snuck off to the bathroom to 'corner' her despite Michael's urgings to give her some privacy. Besides her, that bathroom was empty! I patiently waited until she came out of the bathroom stall and washed her hands, then I made my move! I quickly introduced myself as a fellow trisomy 18 mom, my heart welling with a pride that only another trisomy mom would understand. I gave her the letter and quickly said a few words about our Trisomy Advocacy Group, Trisomy 18 Mommies group, and my family.

Karen started asking me questions and took a glance at the letter and my info card with Rebekah's picture. She recognized Rebekah! She said, "You have a blog, don't you? It's beautiful, I loved it!" My heart burst with pride and I suddenly had the urge to run home and add to my long-neglected blog! My writer's block had been broken!  We chatted some more about advocacy and these words flowed from her mouth, "I have such a passion for this! [referring to trisomy 18 advocacy] I am so tired of doctors telling us our children are 'incompatible with life'."

She asked me about Rebekah's story. How did it start? What did the doctors do/say? What did we do with Rebekah? We chatted for long enough in the bathroom that someone from their security group finally knocked on the door, gave me an evil eye, and asked if she was okay. Before I could say a word, she said everything was fine. She gave me a hug and we left the bathroom. I paused her so Michael could snap a picture of us together. Then her son, Dan, gently told his mother they had to move on to the next location and were getting ready to leave. Michael just looked at me disbelieving I actually DID have the guts to stop her in the bathroom after all!

Let me tell you, I love this woman! She would be such a great First Lady for our country. She is as down-to-earth as Rick, not afraid to shake hands with those around her, and has such a kind heart. I am most honored to meet her, even though I thought it meant I missed my opportunity to speak with her husband. But she had my letter! So I knew he would at least get to see the picture from last summer of him with Rebekah, Michael, and I.

But my evening wasn't finished! I made my way across the room to our table, and I squeezed next to Senator Santorum as he was heading out a side exit door. I quickly stuck out my hand, and reminded him that we had met at the SOFT conference in Chicago last July. He gave me a hug, and asked about our daughter. He, too, gets my vote for the White House!

Saturday, September 17, 2011

My Road To Advocacy...

I was selected this summer to participate in a federally-funded program called 'Partners in Policy Making' which is a leadership training program that helps family members learn the history of disibility law and how to become an effective advocate. Here in South Carolina, it is run through a group called Pro Parents, and they select about 15-20 people a year to participate. I get to travel to our state capital for two day training sessions that will occur over five months, learn about the law-making process at local, state and federal levels, meet speakers who are experts in topics essential to advocacy, and hopefully learn how to effectively advocate so I can better help Rebekah and others like her!   Anyone can petition to participate in the program, and if it is not available in your state as a hands-on learning process, there are free online tutorials at the Partners in Policy Making website that cover the technical information learned during the training.

I FINALLY got around to creating and ordering my own personal advocacy cards in August! It has only taken me a year of talking about it to finally get it done. The hard part was coming up with exactly what I want the cards to convey in such a small space. Because my passion is for advocating for children with trisomy 18, 13 and similar conditions, I chose several organizations that support the trisomy journey - especially those in the journey with living children. I obviously couldn't include every organization, but I can say that these organizations make a difference in the lives of families that choose life for their trisomy kids. Of the amount of funds that goes into these organizations, almost all of it goes right back out to supporting families - you can see the fruits of their labor. The list of people they have helped is long, and their leadership is full of integrity. I have been personally helped by all of them -
  • Trisomy Advocacy Group helps give a voice to those who have none, and helps connect new parents to parents willing to support and help them face doctors and hospitals not trisomy frirendly.
  • Noah's Never Ending Rainbow helps families with living children and bereaved parents who need a little financial help. They helped fund 14 families attending the SOFT conference this past summer - we were one of them.
  • Support Organization for Trisomy (SOFT - trisomy.org) provides a way for trisomy families to connect - no matter where they are in the journey. They put out quarterly publications with lots of useful medical information, and have medical advisors on board that are 'experts' on trisomy kids. There is an annual conference that is incredible - for both those with living children, and those who have lost children. It truly is a wonderful support organization.
  • Hope for Trisomy offers comforting Gemma's Bears and Payton's bears to trisomy families, funds research projects, and helps advocate on behalf of these children.
  • There is another organization that I wish I would've added - Prenatal Partners for Life. They have helped countless friends of mine, and the founder recently lost her full trisomy 18 son. They support families with adverse prenatal diagnosis that choose to carry to term.
This is the front of the card...

...and this is the back side.
There are many other organizations that support the trisomy community, I listed them in this blog entry months ago.  But the ones that made it to my cards are the ones that have supported me most in my journey.

I would really love to be able to go to medical conferences, universities, and any place else where I can show off Rebekah and her trisomy friends and explain that life-limiting does not mean incompatible with life, nor does it mean there is no quality of life. These children are special and have many things to teach us. Rebekah and I are looking forward to our advocacy opportunities and how we can make a difference for trisomy 18 awareness. I start my Partners in Policy Making classes in October - and I can't wait!