NDSS DS-AMBASSADORS™ Craig and Heather Wed in St. Thomas
Wedding bells rang this week for two of our NDSS DS-AMBASSADORS™, Craig Blackburn and Heather Hancock! Craig and Heather had a commitment ceremony on the island of St. Thomas. Our entire NDSS family wishes this amazing couple a lifetime of happiness and health together.
Craig and Heather’s journey and love story spans a decade, and Patricia Ehrle, Craig’s mother, has authored a beautiful account of their journey for us to share with the world!
The Craig and Heather love story began in July 2002 at our National Down Syndrome Society (NDSS) Conference in St. Louis. A friend of Heather’s (and now a fellow NDSS DS-AMBASSADOR™), Doris Erhart, saw Craig working at his organization’s Down Syndrome Association booth. Doris approached Craig and said that she would like to introduce him to a young lady from Oklahoma. Doris made the introductions and the rest is history, so to speak. Craig and Heather spent the remaining time, at the conference together, and even had their “first date” by attending a basketball game. As the conference closed, Craig and Heather exchanged contact information and promised to keep in touch.
The communication began upon their return to their homes in Louisiana (Craig) and Oklahoma (Heather). Craig and Heather got to know each other long distance, attending conferences each year and traveling back and forth for important events in each other’s lives. The very first event was when Heather asked Craig to escort her to her junior prom. The Hancock’s opened their home to Craig and his mom, Pat, for the weekend so that both families could get to know each other. It was a great weekend and our families became immediate friends.
There were a few reasons for this: one was that they knew their children cared for each other, another being that their children shared a like disability and lastly, because their beliefs, dreams and goals for their children were so closely aligned. That weekend was the beginning of what have been many miles traveled between New Orleans and Oklahoma City. Craig and Heather have been able to spend time together at the NDSS and NDSC conferences. The conferences have permitted independent time together for Craig and Heather getting to know each other and spending time with their friends that they saw every year. Both families supported Craig and Heather attending family events, important activities for each and holidays. Craig proudly escorted Heather to her senior prom when she was chosen the prom queen of Westmore High School. Heather attended New Orleans events such as Mardi Gras balls when Craig was the Duke. Both Craig and Heather, either were in family weddings or attended together in their own states and other states. They also shared vacations together in other states. Always at the end of these fun and special times, they had to part and return to their lives in separate states.
The relationship grew and in 2006, Craig came to us and asked if he could propose to Heather at the conference. Ken and Pat did not feel, at the time, that Craig truly understood the responsibility and commitment that comes with an engagement so they asked Craig to take steps to demonstrate that he was prepared to make this very important step. Ken and Pat talked to Craig, and explained that they needed to see that he was really serious about committing to Heather and that she was the one lady he wanted to spend the rest of his life with. Craig accepted our decision and took actions to demonstrate that he was mature enough to take the proposal seriously.
A year later, 2007, Craig came back and asked the same question and this time, Ken and Pat said, yes. Craig called Heather’s parents to ask permission, and he was very nervous. The Hancock’s agreed to the proposal and the wheels were in motion. Craig selected an engagement ring and the plan was to propose at the NDSC conference in Kansas City.
Both families attended the conference and helped Craig select a place in which to propose. There were 14 family and friends who attended the dinner. The restaurant was accommodating in working with the families and offered the cellar as the location. There was a private area for Craig and Heather to have a romantic dinner by themselves and the rest of the party down the hall in another room. When it was time for the proposal, all came together to hear and see the proposal. It was a very special moment when Craig took Heather’s hand and dropped to his knee to ask her to marry him. She looked surprised, but quickly said yes. Craig was so nervous that he tried a couple of times to put the ring on the wrong finger. It is a story repeated frequently. We have been working on which finger for the big day!
Craig and Heather returned to the conference and dance, and their engagement was celebrated for the rest of the conference with participants stopping to congratulate them and see the ring. Wow, still brings tears to our eyes.
Our two families were concerned about a long distance relationship and how the relationship would be impacted when they spent more than a few days together. Details were worked out and Craig and Heather spend an extended period of time in each other’s states. Craig was able to find a job at a nearby grocery store while he was in OKC and the experience went well. Craig and Heather were able to do volunteer work by assisting at a day camp during the summer when Heather spent time in Louisiana. It was a beneficial experience for, not only, the couple, but also, our families.
Like all couples, it has not always been a smooth path, especially, when you consider the distance. What has worked for Craig and Heather are their like traits:
Both are very independent
Both are outgoing and involved
Both love social activities and dancing
Both enjoy and are good advocates
Both are motivational speakers
Both like being on the go
Both enjoy being silly together
Both enjoy communicating
Also, extremely important, has been the support of the parents, siblings and other family members who truly believe in this couple.
Craig, with the assistance of a grant, purchased and moved into his own condo in 2010. He now lives approximately 25 miles from his parents in another city, Metairie. In the period of a month, Craig left his town where he was raised, went to school, worked, went to church and had friends, moved into independent living alone, started a job at a new location, new church, friends and social activities.
Over the years, both Craig and Heather have questioned why others marry and they are not able to do so. In 2014, Heather’s sister, Jennifer married Joey, and Craig’s aunt, Barbara married Ed. Although very happy for both couples, this only added greater frustration to their own situation and left the question as to why they could not marry.
Both sets of parents realized that the time had come to find a way for Heather and Craig to be together, just like everyone else. There are significant challenges that individual’s with special needs face that others don’t in this area.
One issue was distance, Craig in Louisiana and Heather in Oklahoma. Other factors are benefit like Social Security and States Waivers. When Craig and Heather marry, Social Security benefits are reduced by 25%. This might not seem like a substantial amount to you and I, but, to individuals working part-time and earn just above the minimum wage, it is significant. Also, when either Craig or Heather moves from their state, they will lose their waiver services. Craig was on a waiting list for 14 years and began receiving the Waiver when he was 24. The Waiver has enabled Craig to have transportation, which permits independent living and a typical life style like others his age.
The solution agreed upon by Heather and Craig, and both parents and families, is that the couple would have a commitment ceremony in St. Thomas on June 7, 2016.
This week, there were sixteen family members and friends who joined Heather and Craig on a Caribbean cruise from Cape Canaveral to the Dominican Republic, St. Thomas, Puerto Rico and Grand Turk. The wedding party and guests departed from the ship in St. Thomas, where Heather and Craig exchanged vows on the beach with a reception at a beach restaurant and later that day returned to the ship. It was a magical, unique and a special day for this couple that have waited so long to say, “I Do”!
To enable Heather and Craig’s friends to participate in celebrating their commitment ceremony, each family will host a reception in their own states. The couple will, again, have to separate after the cruise and go on with their lives in separate states until Craig’s family is able to sell their home, his condo and move to OK. Both Heather and Craig understood and accepted the temporary separation knowing that the day is in the future when they can begin their lives TOGETHER as man and wife. It has been a goal that they have both looked forward to for, at least, nine years since the engagement and feel fortunate that their dream will be realized.
-Patricia Ehrle, Craig’s Mother and Heather’s Mother In-Law
Unfortunately, Craig and Heather’s story also illustrates the archaic, unjust systemic barriers that prevent or discourage people with disabilities from getting married and leading independent lives. Couples like Craig and Heather face reduction of benefits once they tie the knot. Often, those with disabilities have to choose between marrying and continuing to receive full financial benefits from their respective states. Married couples that receive Social Security benefits can receive 25% less in benefits than if they remained individuals in the eyes of the state.
Penalties such as significantly lower Social Security and Medicaid payments, decreased asset limitations and the loss of valuable state benefits as one partner moves across state lines and needs to wait many years for much-needed supports in the new state, kept Craig and Heather apart for many years. As you read above, Craig spent nearly 14 years on the Louisiana wait list in order to obtain his waiver services. The waiver enables Craig to live his life independently. These roadblocks to marriage impact Craig and Heather and many other couples across the county.
NDSS is committed to tackling these basic human rights issues, beginning over the next year and for as long as it takes. We will be meeting with Members of Congress this summer to develop ways in which the Social Security and Medicaid laws can be revised and reformed to reflect the reality that people with disabilities want and deserve the freedoms that the rest of us enjoy:
- the ability to obtain meaningful employment
- earn income
- save their own money
- opportunity to live where they choose
- and get married
without loss of critical benefits or incurring other penalties.
On behalf of our entire NDSS family, I would like to congratulate two of our amazing NDSS DS-Ambassadors, Craig and Heather (and their families), on this exciting new adventure and invite you to join us in our efforts to fight for these basic human rights for all individuals with Down syndrome! A sincere thank you to Pat Ehrle for sharing Craig and Heather’s journey with the Down syndrome community and the world!