The Important Ingredients of Tom & Lydia’s Marriage

Linda Orso is the mother of Lydia Oso, who was recently married to Tom Swenson in Clayton, MO. This week, Linda talks about her daughter’s journey for our blog.

On November 26, 1977 our daughter, Lydia, was born in Evanston, Illinois. Two weeks later she was diagnosed with Down Syndrome. At the time, we did not know anything about Down Syndrome, and had no idea what was in store for us, our family, or for Lydia. However, very soon after Lydia’s birth we met with parent support from The National Association for Down Syndrome. 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 the turn of events that we never expected to happen.

On April 13, 2013, Lydia, who is 35, and Tom Swenson, who is 39 and has Epilepsy and developmental disabilities, got married.They currently live with Tom’s parents, which is about 10 minutes from us.

To give you some background, Lydia spent most of her early years in Evanston and Winnetka, IL, where she was educated in various public high schools. In 1994, we moved to the St. Louis area.

Throughout her life, Lydia has had many goals and dreams. Lydia has been blessed with talent, determination, and support, all of which have helped her achieve many of those goals and dreams. So, when is became obvious that Lydia was determined to one day be married, we took it very seriously (eventually!) and encouraged her to develop a plan for accomplishing this dream. One day, she met Tom, who shared her dream of getting married.

Tom and Lydia (image courtesy

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

While it would be fun to share their love story of how their relationship blossomed and grew over three years, we would rather share with you the important ingredients we believe enabled the relationship and marriage to happen.

Once Tom and Lydia announced their desire to be 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 St. Louis Arc, which has extensive experience in counseling couples with developmental disabilities. They will continue to meet with this counselor in the foreseeable future.

From the outset, we all agreed on the importance of being completely open with one another on all matters, including physical and emotional health, finances, sex, and whether or not the relationship had the makings of a long-term match. In these conversations, Tom and Lydia agreed that children would not be in their future.

There were other important ingredients, as well…

  • Tom’s parents offered to have Lydia and Tom live with them in their home once they were married.
  • We moved closer to the Swenson’s to help share support responsibilities.
  • Tom’s parents took primary responsibility for providing or assisting with Tom and Lydia’s transportation needs because neither Tom nor Lydia drive.
  • Both Tom and Lydia have full time jobs and receive health benefits.
  • Tom and Lydia are capable of handling many routine life skills, such as cooking, cleaning, laundry, computer, and cell phone skills.
  • Both sets of parents are actively involved in helping the couple with other aspects of life, for example, money management, doctor’s appointments, decision making, and vacation planning.
  • Both sets of parents are very compatible with each other personally, and in terms of everyone’s 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 this ingredients cannot be available for everyone, but this is what we were able to help create for Tom and Lydia.

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

If you would life to know a little bit more about their story you can check out this short video of their wedding day, or read the St. Louis Dispatch article about their big day.

Joe and Linda Orso