By Joe and Linda

On November 26, 1977 our daughter, Lydia, was born at Evanston Hospital. Two weeks later she was diagnosed with Down syndrome. At the time, we didn’t know anything about Down syndrome, and of course had no idea had what was in store for us, our family or for Lydia. However, very soon we met Sheila Hebein from NADS, and at that point, our journey was officially underway.

The point of this article is not to tell you about Lydia’s life story, but to share with you a turn of events that we never expected to happen.

On April 13, 2013, Lydia, now 35, and Tom, 39, who has Epilepsy and developmental disabilities, got married. They are now living with Tom’s parents, who are only about 10 minutes away from us.

To give you some background, Lydia spent most of her growing up years in Evanston and Winnetka and was educated in various North Shore schools, including New Trier High School. In 1994 we moved to the St. Louis area.

Throughout her life, Lydia has had many goals and dreams. Lydia has been blessed with enough talent, determination, and support that helped her achieve many of them. So when it became obvious that Lydia was determined to one day be married, we took this seriously (eventually!) and encouraged her to develop a realistic plan for hopefully realizing this dream. One day, she met Tom, who shared the dream of getting married someday.

They fell in love, got engaged, and in April they got married.

While it would be fun to talk about the love story and how the relationship blossomed and grew over three years, we would rather tell you about what we think were the important ingredients that enabled this to happen.

Once Tom and Lydia announced to both sets of parents their desire to get married, we insisted that they begin a regular (bi-weekly) schedule of pre-marital counseling. We were fortunate to find a counselor through our local Arc who had extensive experience in counseling couples with developmental disabilities. They will continue to meet with this counselor for the foreseeable future.

From the outset, we all agreed on the importance of being completely open on ALL matters, including physical and emotional health, finances, sex and whether or not this had the makings of a long-term match. (Tom and Lydia agreed that children would not be in their future).

There were other important ingredients:

  • Tom’s parents offered to have Lydia and Tom live with them in their home once they were married.
  • Tom’s parents took primary responsibility for providing or assisting with their transportation needs, including buses, taxis, walking, parents, siblings, etc. (Neither Tom nor Lydia drive).
  • They both have full time jobs, and each receives health benefits.
  • Both Lydia and Tom are capable of handling many routine life skills ….cooking, cleaning, laundry, computer, and cell phone skills.
  • All four parents are actively involved in helping the couple with other aspects of life, e.g., money management, doctor’s appointments, decision making, vacation planning, etc.
  • Both sets of parents are very compatible with each other personally and in terms of their goals for Tom and Lydia.
  • A prenuptial agreement was developed by an attorney to address legal, long-term health and financial matters.

Of course, every situation is different, and maybe some of these ingredients can’t be there for everyone, but this is what we were able to help pull together for Tom and Lydia.

We have always believed in the “dignity of risk” and, of course, marriage for people of any ability level involves risk. We feel that Lydia and Tom are prepared to live a happy life together and to meet the challenges that lie ahead.

If you would like to know a little bit more about their story, you can check out a short video of their wedding day on YouTube at:

You can also read Bill McClellan’s article in the St. Louis Post-Dispatch at: (or just go to and do a search for “unexpected wedding”).


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