Pause

I'm not even going to lie. This post is a braggy mom one. I simply can't help it. Hope, my oldest daughter, has created a short film for the Easter Seal's Disability Film Challenge again this year. Most of you already know, but Hope has Cerebral Palsy. She has Ataxia (tremors) in all four limbs. All the doctors have always said she just didn't cook long enough. She was a thirty week baby, which was in the oven longer than we expected. With only one lung, it was impossible to carry a baby to term. I was hospitalized at 27 weeks and told she could come anytime. It's nothing short of amazing that the University of Arkansas for Medical Sciences (UAMS) was able to keep me pregnant those last three weeks. After seven weeks in the NICU, she was able to come home and then the journey started.

It's ironic she's titled her film this year "Pause," because there have been zero pauses in Hope's life. She started physical, occupational and speech therapy at 8 months old and has been going ever since. We've done everything from Intensive Integrative Metronome physical therapy to "Learn to ride" balance and bicycle camp with a NASA rocket scientist. We never paused. Worried she would have trouble living a normal life, I was too scared to do otherwise.

That's not to say we didn't have roadblocks. Unfortunately, raising a child with special needs isn't for the faint of heart, so by the time Hope was four I realized I was going to have to do this on my own. With a secretarial job and only $36 to my name I still had "Hope," so I knew we would eventually be okay. It took a while, but I remarried, (someone with a great healthcare plan.) Don't judge. Unless you've raised a child with special medical needs, it is impossible to understand the necessity of health insurance, not to mention the need for a supportive partner with money and resources. This road took Hope and I away from all of my family and friends in Arkansas, but I wouldn't change a thing. Look at her now.

Living in Northern Virginia near Washington DC did allowed us access to world renowned medical and education services, but we never paused. She was an Assistive Technology Ambassador for Fairfax County School District, which was the 13th largest school district in the country at the time. She was the keynote speaker for several local and state special education conferences. She blossomed. After her high school graduation, we relocated to Phoenix, Arizona. Once again, she didn't pause. She went straight to the University of Arizona for a communications degree. While at the University, she worked as an ambassador for the Strategic Alternative Learning Techniques (SALT) Center. She graduated in four years with a minor in Theatre. As a matter of fact, in you are ever in Tucson, Arizona, stop by the communications building at the University and you will see a plaque with Hope's name on it. She was awarded the Kathryn Ann Governal Perseverance Award with a permanent plaque mounted in the building.

She didn't pause. She kept moving forward and this wasn't exactly easy after college graduation. Most know that the transition from college to adulthood is difficult for anyone. Imagine how daunting the workforce can be for someone who was never supposed to be able to walk. Eventually, she found a home at Arizona Special Olympics working with the Unified School Program. It's been a perfect fit for my little go-getter, but she's always had a love for theatre and film. On weekends and time off Hope chases her dream. She even created her own production company. She named it "Have Hope Productions." I couldn't think of a more fitting name. This is her fourth year entering the Easter Seal's Disability Film Challenge. Last year her film was nominated for "Best Awareness Campaign." They didn't win, but she was able to attend the awards ceremony held in the Carey Grant Theatre in Sony Studios. I was fortunate enough to get to go with her.

Watching her being interviewed on the red carpet was pretty phenomenal. All week she's been trying to promote this year's film, "Pause." The genre for this year's competition was Dramady. She chose to create a short based on a car wreck she had after learning to drive. It's ironic she chose this, because at the time it actually happened she was distraught, but she didn't let it pause her life. She eventually got back out and started driving again. She amazes me. These film challenges have nothing to do with her job. This is her passion she pursues on the side. She says her goal is to promote inclusion by authentic representation in the industry. This film in particular highlights some of the issues the mildly differently abled face.

Technically, Hope's initial diagnosis was Mild Cerebral Palsy. As a mom, I was thrilled it wasn't severe, but watching the varying struggles Hope has had over the years has shed tremendous light on the mildly differently abled. Hope and I have noticed that when someone sees a

wheelchair they immediately recognize the person has a disability, but often when people see Hope they just think she walks a little different. Hope still attends physical therapy weekly and will for the rest of her life. It may look like she's on pause, but she is constantly working. I love the analogy she gave her second grade class when she explained her CP. (That's right. She was public speaking in the second grade.) She had the students hold their biceps up flexed continuously until eventually they shook. She explained that her muscles are flexed like that all the time, so when she accidentally spills milk or elbows someone and they mess up a coloring page it's due to the tremors. These are always present. She has increased muscle tone, so she literally has to continuously work on flexibility. No pausing for her.

If you have a chance please watch her short film. It only takes five minutes of your time. Take a pause for a few minutes and get a glimmer into this BABs life. She is the epitome of badass.

https://youtu.be/vlUdl5xaYrU?si=jxoOcMZXfnJ0AnwC