GPP: Tell us about the day your family’s journey with Wolf-Hirschhorn syndrome began?
Lori: Haley was 12 days old when testing was finalized, and confirmation of her syndrome was given. Once we learned of her diagnosis, I went through a grieving period for the loss of the daughter I thought I would go home with. I was so overwhelmed. I wondered what life would look like for all of us. I was scared. We had been told she probably wouldn’t make it past two years old and to take her home… “and love her.”
GPP: Looking back 23 years later, what has Haley’s diagnosis taught you about never placing limits on a child’s potential?
Lori: I found that most of what we’re told wasn’t true. Haley is 23 years old, so she beat the mortality age for sure. Her milestones, like walking, talking, and sitting up, didn’t happen when most children did, but they did happen. She actually took her first independent steps in the middle of her 5th birthday party at the bowling alley. The whole place went crazy.
Haley has shown us that with much love, determination, grace, acceptance, and help… she can do a lot of things. If I had listened to the doctor, we could have easily just sat and watched her live. But I wanted her to have a life and do everything she could. It was a lot of work s with many amazing people, teachers, and therapists, but she showed us she was definitely able.
She has played baseball at Miracle League since she was 3, took dance and participated in recitals, and was on a competitive cheer squad – all with other special needs children. She was in the Junior Honor Society at Ransom Middle, an honorary color guard member at her high school, ran attendance to the office, and helped in the coffee shop at school. She needed assistance, but she loved it and thrived.
GPP: What have been some of your proudest moments watching Haley reach milestones that others thought were impossible?
Lori: Any and all milestones were such big achievements in all of our eyes, because we had been given such a dim light about her future in the beginning. She walked for the first time at her 5th birthday; she has always loved the attention, but watching her walk across the stage at her high school graduation…I cried like a baby! I cried for so many reasons – pride, happiness, love, respect, and gratefulness for her and everyone who helped her get there. Haley’s determination is so strong… at times it’s stubbornness, but without it, she wouldn’t have gotten this far.
GPP: Why has inclusion been so important to your family, and what impact has it had on Haley?
Lori: Haley is a person with strengths, weaknesses, and needs. One of the things that the doctor told us on that 12th day, during diagnosis, was that she would be devoid of any personality. That could not be more false. As Haley started to make gains, we wanted her to be included to the extent that she could be. It’s good for her, and it’s good for others. She is very social and knows no strangers. Her being and feeling included is as important for her to live a full life as it is for “typical” children to be around children like Haley.
GPP: What are some of the biggest misconceptions people have about individuals with developmental disabilities, and what do you wish more people understood?
Lori: I think most people underestimate what these kiddos can do. We have to give them all the opportunities to grow and succeed, just like any other child.
At my school, I have my yearbook staff team up with our ESE class every year, for them to get to know each other and work on activities together. This all started the year Haley was 14 and attended school where I taught. It taught typical students how to interact with students like my daughter. I continue that program to this day because of Haley and the positive things that I see come out of it for both classes.
GPP: If you could sit down with the version of yourself who was holding 12-day-old Haley after receiving her diagnosis, what would you tell that young mom today?
Lori: I would tell her to breathe; it’s going to be okay. Haley will bring so many amazing people into your life that you would never have met if it weren’t for her disability/syndrome. Things aren’t going to be easy; they will be different, but you will get there. “Welcome to Holland” is a poem that was given to me early on, and it means so much now… stop and smell the tulips. Look at the windmills. It’s lovely here. It was an unexpected trip… but look at what you would have missed out on if it weren’t for Haley.
Rapid Fire:
Flip-flops or tennis shoes? Flip-flops
Good book or good movie? Book
Football Saturday or cozy movie night? Definitely football
Favorite snack? Anything peanut butter, like M&M’s and Reese’s
One word that describes Hailey? Friendly
Lori Johnson is the gifted language arts teacher at Ransom Middle School, where she also serves as the Yearbook Advisor. This year marks her 30th year in education. She and her husband, Rich, have been married for 17 years after meeting on Match.com. Rich recently retired after serving both in the military and in civilian leadership supporting Naval Aviation. Lori has two daughters from her previous marriage, Hannah (26) and Haley (23), who has Wolf-Hirschhorn syndrome. Whether they’re playing cards, enjoying time in the pool, or taking their camper on a new adventure, Lori treasures making memories with her family.
