I am so lucky. I had a pretty happy childhood even though my life rarely looked similar to any of the people I know. My story starts with my mom’s story, big surprise. Her name is Kate and she was born with a hole in her heart, or for all you medically versed people out there, she has an atrial septal defect (ASD).
Physical activity was always a challenge for her but they didn’t figure out about the ASD until she was 21.
So she goes in for open-heart surgery at age 19 and it’s not the non-invasive type. They have to open her chest cavity to operate on her heart. We talked recently and she talked about how she could see where they wired her rib-cage back together. This was back when she was able to have x-rays.
The surgery is successful and the next year she is tobogganing (sledding) and she doubles over with chest pain. My uncle rushes her to the ER and it turns out she has had a heart attack at the age of 20, it has injured her heart, the left ventricle, and it will never fully heal.
Fast-forward several years and she meets a handsome military man (Rick) painting scenery at a theater in York, Pa. They both have high anxiety, PTSD, and they both have a strong sense of their own mortality. Did I mention my mom is a nurse? I always thought it was a nice story that a nurse and military man fall in love, and make a life together. It is a good story but it comes with some pretty heavy subject matter.
My dad has trouble finding work as a military veteran so he does what many vets do and enlists for another 4 years. They are in love and get married quickly. Now she can move with him when he is deployed overseas.
Then they move to Frankfurt am Main Germany and less than 2 years later they have an 8 lb bouncing baby girl (me).
Since there was some challenges getting pregnant the first time, they were surprised when she got pregnant again so quickly. Any pregnancy can be risky but she hadn’t fully recovered from the last pregnancy she was high-risk. She ended up going on bed rest part-way through the pregnancy and ten months after I was born I got a little brother.
He was born a little over 2.5 lbs and was placed in an incubator in the NICU in Germany. My dad always said he looked like a barbie doll with a big head when he was born, that was how tiny he was. They both spent a lot of time in the NICU trying to get this tiny baby boy strong enough to come home. I don’t remember this but I spent a lot of time with my godfather’s family while my parents tried to get my brother healthy.
When I was about 1 1/2 years old, we all moved back to the US. My mom flew on the medical plane that took my brother back and I flew with my dad on the military plane. He said all the enlisted soldiers were missing their families. They gave complimentary chocolates to the soldiers on the plane and I received and ate so much chocolate I threw up on my dad’s Class A uniform. The journey back to the states wasn’t flawless but we made it back!
Growing up I never remember a time where I wasn’t helping my brother (Rex). He followed me from activity to activity trying to figure out what to do, and I looked for him to make sure he was doing ok and having a good time. He was diagnosed with autism pretty early on for that time period (this was in the late 80’s). He is high-functioning and IQ smart but day to day tasks and social situations have always been challenging for him.
Long story short by 6th grade my brother and I were in the same school because they were “streamlining” kids with learning disabilities. This means that he could attended regular classes and receive extra assistance, or he could have classes with a higher level of guidance and interaction but these classes were available at the regular school. They did have a school for disabilities too but as I said Rex was high-functioning and seemed capable enough to attend some regular classes.
The down-side to attending a regular school became apparent pretty quickly. Kids were just mean. He found social situations confusing and he would have trouble expressing himself and controlling his emotions was challenging. Kids picked up on that and used to tease him. They thought it was hilarious and he would get really upset and act out.
This year was the first time I realized how much having an advocate can make a difference in someone’s life. I made a huge fuss anytime I saw someone picking on my little brother. Word got around that Rex had a big sister that would come around and teach people a lesson in good manners.
This grew into a movement I hadn’t expected. I had put myself out there to protect my brother and now people were coming to me and letting me know if someone was bullying him. Other people who cared for me also stood up for him because they knew I would appreciate it.
People who didn’t know me watched other people advocate for my brother and they started advocating for him and other students with disabilities. It only takes one person to care and to speak out to truly make a big change.
By the time I graduated high school I felt confident that my friends still attending school would help make Rex’s last year really special. They always said hi to him and were there to help him if he needed anything.
I could never thank everyone enough for the support my brother received in school. I have no idea how his school experience would have been if had been tortured by bullies his whole way through.
What I do know is that he loved school and it was a good experience for him. It gave him the confidence to attend a trade school for people with disabilities. He also enjoys work and being around people. I know that he might be completely different if he had had a different experience at school.
Change starts with a small step, one person speaking out can make great improvements in the lives of many people.
Did you enjoy our story? Did it sound familiar or totally different than what your every day looks like? Feel free to comment and share your story too! Stay in touch by joining our mailing list and connect via social media.
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