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Showing posts with label SOFT conference. Show all posts
Showing posts with label SOFT conference. 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!

Sunday, May 15, 2011

Stroll for Hope - TEAM BUDD ZOO

TEAM BUDD ZOOBack: Michael & Susan
Front (left to right): Isaiah (6), Jeremiah (8), Elijah (10) holding Rebekah (2), Josiah (4)


Please support TEAM Budd Zoo in a Stroll for Hope to raise money for SOFT.  Your tax-deductible donation of even a few dollars will go to help educate both families and the medical community about trisomy 18, 13 and related disorders!  Read below for more information...


When I was pregnant with Rebekah, the majority of the information I got from doctors and online resources were full of doom and gloom. We prepared for the worst. But when Rebekah ended up living and thriving, I was left without information on how to care for her. One of the few organizations I've found that actually has medical advisors and trisomy experts, as well as an international registry of trisomy 18/13 families, is Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) - a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome disorder (especially Trisomy 18 and Trisomy 13), and education to families and professionals interested in the care of these children. 

We are excited - all seven members of the Budd Zoo will be attending the SOFT Conference in Chicago in July! The conference will provide a free medical clinic for the SOFT kids, and Rebekah will be able to consult with 3 specialists to get additional advice on her care.  

As part of the conference activities, we will be participating in a Stroll for Hope event to raise money for SOFT. We are taking pledges/donations for our stroll around HOPE Hospital in Chicago, IL. Your donations are tax deductible and go to a great organization! And thanks to SOFT, our family has received a scholarship to help us offset the conference costs, and we want to be able to give back so other families can attend in the future. 

My plug for supporting SOFT (trisomy.org):
I encourage anyone facing a journey with a SOFT child, including the medical professionals that will care for them, to join this organization because of all the things they can provide:
  • Help and support for families;
  • Medical advisors who are experts on trisomy 18/13 kids;
  • Materials available for care of trisomy kids;
  • SOFT Times, a quarterly magazine full of informative articles, life experiences, practical information, summaries of latest research articles, tons of inspiring pictures of living and thriving children, and much more;
  • New family packet that is a great resource.
I have found their materials to be awesome resources for our family and for Rebekah's doctors. The books include info like typical problems, recommended medical treatments, and growth curves for trisomy kids.

Most important - this is a volunteer run organization! Even the medical advisors are volunteer. All money donated to SOFT goes to subsidize conference costs, create informative materials for families, education opportunities, support of trisomy-related studies, and so many other good programs! It DOES NOT pay for salaries or projects in conflict with the purpose of the organization.



Thank you for your love and support of Rebekah, and children like her!