New Parent Support Volunteer with Down Syndrome Association

When Matthew was born in 2007, the first hour of his birth was a great celebration for us. The news that the doctors suspected he had Down syndrome sent us into shock and the hour of celebration was clouded with disbelief, worry, a loss of control, and sadness. The many days that followed were unfortunately filled with anxiety, uncertainty, loneliness, guilt, and grief on top of sleep deprivation and crazy hormones.

The early days of having Matthew home were physically and emotionally draining. Some days it was hard to talk to other people and smile while some days were manageable.

It was one of Bill's sisters who connected me to their neighbor, who was another mom with a 9-year old (at that time) with Down syndrome. She also happened to be a new parent support volunteer. I vaguely remember being asked if I wanted to talk to her. I think my initial answer in the first few weeks was "not yet."

There were many days when my mind was heavy with thoughts about possible medical issues, more bloodwork and doctor visits needed, independence as an adult, and protecting Matthew from discrimination and ridicule.

Almost a month after Matthew's birth, I received a letter in the mail from that mom. Reading her letter today still made me teary-eyed as I recalled the past. Her letter was congratulatory, very reassuring, comforting, encouraging, and insightful as she shared a little bit about her family and her own emotions when her son was born. She also included a mini photo collage of her son through the years, which I liked to see. (I was recently made aware that during the early weeks, some moms are reluctant to see photos or meet other kids with Down syndrome). At the end of her letter she wrote:

"Matthew will be the sunshine of your life. The challenges which you will face will be matched, or exceeded by, unexpected blessings."

I invited her to our home shortly after. She came with a New Parent packet from the Down Syndrome Association, which was loaded with important information. Like many things affected by fatigue during that time, our first meeting is now a blur. I only remember that it was nice to meet and talk to her. We got along well. I don't remember feeling depressed or crying while she was visiting so I must have been able to pull myself together and manage a conversation and a few smiles. She was a great source of encouragement and knowledge.

After making the connection personally, it was very reassuring to know I wasn't alone. The book "Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives" also helped cement that reassurance. Reading Gifts led me to find blogs of other moms and dads who have kids with Down syndrome. And that led me to start this blog.

But I wanted to do more. I wanted to be a source of support, encouragement, and information via the blog AND in person.

Answering what I perceive as a calling, I trained as a New Parent Support Volunteer with our local Down Syndrome Association this past Saturday. I've been wanting to do this since April last year but Elizabeth was a couple weeks away from being born and having a newborn would make it impossible for me to commit to the responsibilities.

I'm very happy to have this opportunity to pay forward the support that my new parent support person gave me during my most vulnerable time. Thank you so much!! (You know who you are.)