Wendy and Matt: Down syndrome

Oct 30, 2023 | Down syndrome- Trisomy 21, Stories | 0 comments

When Wendy first found out that she had a son with Down syndrome she was devastated.  She felt as if her life was over and didn’t know what life would look like for their future.  32 years later she now realizes how great her life is with her son Matt in it.

My life is ruined

When Matt was 3 hours old, Wendy recalls her experience, “Yeah well so a lot of emotions, a ton of emotions.  I think every emotion known was going through.  I experienced um shock, fear, trauma, devastation, anger, what did I do?, um why me?, All of those because what I did know about Down syndrome I was afraid that my life had just been ruined.”

After a few days in the NICU Matt was able to go home.  Wendy shared what leaving the hospital was like, “The truth is by the time I left the hospital I had bonded with him..so we stayed in the hospital with him and I you know had a lot of time just he and I, when the nurses would bring him in to me I couldn’t see all of those abnormalities..all I could see was this perfect little baby.”

Proving the naysayers wrong

Wendy had one goal when she left the hospital: to prove the naysayers wrong.  She shared what goals and hopes and dreams she had for Matt.  She said, “So we walked out of the hospital doors and I had these goals, he was going to drive, he was going to work, he was going to get married, he was going to finish high school, he was going to date, he was going to do all these things.”

After 32 years Wendy shared, “He’s done things that even I, I’ve underestimated in my own son you know.  But at the same time we had to shift those goals and dress that I have for when I walked out of the hospital, we just created new goals and dreams.”

Fighting the school system

One of the hardest things Wendy had to do for Matt was fighting to get a good education.  She explained that while she wanted him to be mainstreamed she understood that Matt needed a different approach to learning.  He attended a cluster classroom.  The downside to the cluster classrooms was the inconsistency.  Each year the cluster classroom would switch locations.  

Wendy said, “So for us the cluster worked well. It was just unfortunate that it moved from school to school and so every year it was him getting to know a whole new set of other students and teachers and staff.”

The cluster classrooms weren’t the other issue Wendy and Matt faced while working with the school system,  She said, “They even went as far as trying to guilt me into backing off because my request was taking away from another child’s need.” 

It would take too long to talk about the joys

Wendy said “..there is joy in everything you know we celebrate.  I did not know this life would be a life of celebration.  We celebrated when he learned to tie his shoes, when he learned to button up his pants..there are hoys in watching him accomplish what he wants to do..you can’t even pinpoint all of the joys.”

“You’re in for a wonderful ride, you know this, I know it’s hard to believe this right now but trust me this life is going to be amazing.”

Finding a great man

For many years Wendy was a single mom.  She felt as if she would be alone forever.  She was hesitant to date anyone for fear of rejection for both her and Matt.  However, once she accidentally met John their lives changed for the better.

“John is awesome, he came into my life just when I needed him and when it became serious and I felt brave enough to introduce him to matt..I mean we’ve been together for a good 25 years nd so he and Matt are like buds..they just go hang out..i just love watching how he treats my son.”  Wendy shared.

Writing a book from life experiences

Wendy took all of her life experiences and situations and was able to write them as a book to help other parents going through what she did.  She said, “Every chapter is a story and it’s a situation he’s put me in whether it’s embarrassing or in a learning opportunity..so what I’ve done is tried to make it a book of humor because in this life we need to laugh.”

Wendy’s book is called, ‘Big People Don’t Pee in the Park: A Mother and Son’s Journey with Down syndrome’.  It was published October 3 2023 just in time for Down syndrome awareness month.  


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