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Welcome back. Today, we’re here with Tami Young. She’s one of the owners of Young Construction and her and Dan have three children, Michael, Josh and Olivia. Josh and Michael are twins and Michael was actually born with spina bifida. October is spina bifida awareness month. So, we thought we would do an awareness campaign for the month of October. We’re going to talk about how we can help as a community and what it is.

When I was first pregnant and I got the diagnosis, I had no clue what Spina Bifida was. It happens in the first month of pregnancy and it’s when the spinal cord doesn’t develop completely/close all the way.

Did they see that on the ultrasound?

Yep. I saw it on a specialty ultrasound at about 20 weeks because I had twins. I still remember the day of getting that diagnosis. They were born at 36 weeks so you knew ahead of time.

Yes, we knew that Baby A – later to be Michael had the birth defect and Baby B – later to be Joshua didn’t. I think that Spina Bifida is something that we need to educate our health field on. You know, when we said, what is spinal bifida? The doctor says, “If you think your child’s going to play football, you need to think again, cause he’s not going to play football.” And they also gave us an alternative options if we did not want to have a child that had a disability. So, I think we need to one educate that a disability is not a negative thing that, there’s a lot of ABILITIES in disabilities that children bring out to families and communities. Two our communities need to be advocates for children with disabilities and what to do when a child or pregnant mother is diagnosed with a disability.
I mean, I had no clue what spina bifida was before working here. When you guys said Michael had it I didn’t know if he could walk? Was he in a wheelchair? Did he have autism along with it, I didn’t know exactly what it entailed. And to find out – he’s fully functioning and way smarter than me.

He’s smarter than me! You know, we got the diagnosis 13 years ago and you know, unfortunately the doctor wasn’t very positive. And I don’t think he was positive because he really didn’t understand the full spectrum of the birth defect. He knew the child may not walk and will have urology issues. He was a baby delivery doctor and doesn’t really see who the child becomes. They don’t see them past birth. He knew the basics that the baby will need surgery to close the spine and will probably need a shunt in their head to regulate the fluid near the brain.

Michael has been through a lot of surgeries and you guys have been there right along with him and it’s not one for the faint of heart. It’s time consuming. It’s financially consuming; mentally draining at times. And you guys had your own business. So trying to juggle, what do we do now?

Fortunately, when Michael was born, I was working for a small radio company and it was family-owned and they were wonderful people to work for. They helped me along the way. One of my coworkers at a different location had spina bifida, she with a DJ at the radio station. So, they were very positive along the way and encouraged me to take time off to do what I needed to do for my family. That’s something that I’m truly grateful for. But it’s very emotionally exhausting, especially to be first-time parents having two kids and then one with a disability.

A lot of people don’t have the opportunity to take time off or they don’t get paid for their time off – plus the driving. Then you have to stay at the facility where your child’s having surgery. You can’t leave them alone for a week while in recovery. Michael, can walk still and he functions like any other teenage boy.

It can be a lot for people that have a job or an employer that won’t all them to take time off. It can be financially hard and emotionally hard. That’s why we want to raise awareness, not just this month, but every month. But this month we’re doing a campaign to help families with the assistance for travel and lodging and everything that goes with being with them. The Iowa Spina Bifida Foundation is great and can designate money to specific travel an lodging funds.

We’re really excited to bring awareness mostly and to show that, it’s not something to be scared of. It’s not something you won’t make it through. It’s just something that you live with. Thanks Tami, for being on today. Spina bifida is a journey you never expect to take. It’s not a journey that you wish for a child or a loved one. And it’s not one for the faint of heart. However, there are many blessings to see along the way.

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