When we, Paul and Susan Spieker, found out we were expecting our third child, Paul said, “I just hope I don’t have to learn a bunch of new medical terms.” You see, our first child, a daughter, was born premature, weighing only 2 lbs. 10 oz. Our second, a son, had five surgeries before he had turned three. Neither conditions were related to the other, just ‘flukes’ as the medical people told us. So we were greatly anticipating a more ‘normal’ birth experience. After all, it couldn’t happen to us a third time, right?
Jessica Eleanor Spieker came into the world on June 16, 2001. A nurse commented that she’d never seen a newborn with such blonde hair before. But then the operating room got quiet. Our new daughter’s vitals were sluggish, we were told, not coming up to the levels needed. They noticed other things, symptoms and features familiar to them but not to us. The news was delivered abruptly — Jessie had Down syndrome, as well as having some abnormalities in her heart. Susan got to see her new baby for a scant few minutes before Jessie was whisked away to another hospital with a NICU. It would be four days before mother would see her child again.
But really, those were the most difficult days. Nearly everything since then has been an adventure and a joy. Yes, we had to learn more medical terms. But we also got to see the amazing variety of therapeutic and educational systems in place for kiddos with special needs. ESUs — Educational Service Units — sent specialists from the time Jessie was three months old to our home to evaluate and educate us on ways to help Jessie learn and thrive. Once she entered Malcolm Public School, she was surrounded with thoughtful and loving teachers and paraeducators, all striving to help her reach her fullest potential.
There have been hiccups along the way. In 2012, it was determined that Jessie needed open heart surgery to repair a leaking valve and mend a small hole. She came through it like a trooper, however, requiring only four days of hospitalization and two weeks away from school. On day five post-surgery, she was dancing to Kung-Fu Panda!
Jessie’s biggest challenge now is speech and communication. Her words are rarely understood by anyone other than immediate family and teachers. She sometimes has a pronounced stutter and has great difficulty with certain sounds — j’s, r’s, w’s to name a few. She has an electronic tablet with an adaptive language program she sometimes utilizes, but rarely uses it unless specifically prompted.
This year, we have been taking Jessie to the Barkley Speech-Language and Hearing Clinic at UNL twice a week for targeted speech therapy. There, she is learning to use ‘stretchy speech’ instead of a stutter, and how to pace her words so she is better understood. We have seen good progress with this, though there is much work that still needs to be done to enable her to express her needs and wants to others in a way that is understood.
All of this is, of course, towards the goal of making Jessie as independent as possible as she moves closer to being an adult. She will turn 17 in June. Life-Skills classes at Malcolm High School are teaching her the things she’ll need to know as she moves towards greater independence — cooking, cleaning, managing money, etc. She has a job she enjoys, sorting shoes at the People’s City Mission warehouse, and loves her recreation time as well — dancing, swimming, painting.
We have been very blessed. Paul has a good job that supports the family and enables Susan to stay at home to take Jessie to therapy sessions and be with her after school and during summer breaks. Jessie has little-to-no physical limitations — other than being very short (which runs in the family!). Our only real expense with her now is the small fees paid to UNL for speech therapy. Our wish is that all money raised in her name through Witness for Fitness go to the Villa Marie Home and School for Exceptional Children.
We are profoundly grateful for the support of North American Martyrs parishioners and the Witness Through Fitness event in honoring our daughter. We hope that through this, you get to know Jessie a little better. When you say ‘hi’ to her after church, be patient and give her a long several seconds to answer. She may take a little time to reply, but she loves to meet new people.
Oh, and if you tell her a ‘knock-knock’ joke, you’ll be her friend for life!
Come support Jessica this year’s Witness Through Fitness.
- 5 K Race/ Walk – $10.00
- BBQ Meal – $10.00
- T-Shirt – $10.00
- Donate Online
- Register and Donate Online
- NAM Parishioners can sign up in the back up church
- Contact Julie Crawford at 476-8088 or via email to email@example.com