Friday, January 22, 2016

This bereaved mom lives with no regrets

By Louise Kinross

When her son Jordan was 10 days old, doctors told Cheryl Runstedler he was going to die. Jordan was born at 24 weeks weighing one-and-a-half pounds with many disabilities and medical problems.

Instead, “I had him for five years,” Cheryl says, and until his death last September, she and her husband Joe filled his life with fun. “I have over 100 videos of him and thousands of photos. In March before he passed away he was granted a Sunshine Foundation wish and we went to Disney with him. And the week before he passed we took him to the CNE and he went on the Ferris wheel. We were all about him loving his life and having fun.”

BLOOM spoke to Cheryl about how she approached life knowing that Jordan would likely die young.

BLOOM: Tell us a bit about Jordan.

Cheryl Runstedler: He was in hospital for five and a half months and had multiple surgeries. He had a brain injury at day three. At three months he was diagnosed with profound hearing loss and he had cortical visual impairment, which affects the processing part of vision. At seven months he was diagnosed with cerebral palsy. He came home on oxygen and had a lot of metabolic issues that required medication and monitoring. I used to say that [cerebral palsy] was the easy part. We knew we were going to have a special-needs child and we just wanted him to live.

BLOOM: What was most challenging?

Cheryl Runstedler: It was dealing with other people, the doctors especially initially. Trying to get them to understand him and not underestimate him and not just assume he’s not worth it. The medical profession looks at everything needing to be perfect. I used to tell doctors everyone has a disability, some are just more visible. I didn’t want Jordan to feel like he was broken or that we were disappointed. We felt blessed to have him.

Early on I got rid of any negativity around me—any doctors, nurses or therapists who were negative. I surrounded myself with a core of doctors—the complex-care doctors at SickKids and a neurologist—who knew and saw him as a little boy. Then when he became an inpatient, I could call on those doctors.

BLOOM: What kind of things did Jordan enjoy?

Cheryl Runstedler: He loved to play. My husband would do wrestling moves with him on the bed and he loved that. He liked the sandbox and swings at the park. We took him everywhere. We went to the grocery store and they played loud music and I’d dance with Jordan in the aisles.

Once he had his cochlear implant and could hear, he was quite fussy about watching cartoons. He played with our neighbours—they have a two- and three-year-old and we’d bring him over to their house. We did lots of neighbourhood and city stuff. He was very smart and very particular and stubborn and also mischievous. He had a huge pouty face and a googly little grin.

BLOOM:  Was he accepted in the community?

Cheryl Runstedler: We got a very thick skin in the beginning. When he got hearing aids I made a point of getting molds that were the most colourful things you’d ever seen. I thought if people are going to stare, I want them to stare at fun stuff.

BLOOM:  How did you approach therapy?

Cheryl Runstedler:  I told therapists that if I can’t incorporate this into our day-to-day life, and in fun and play, I’m not going to do it. They’d look at me with shock. I got rid of a couple of them. One said Jordan was lazy. I said ‘No, he’s not lazy, he has severe low muscle tone.’ 

I wasn’t trying to fix him. He had a brain injury and I wanted him to enjoy his life. That was more important to me than therapy. 

When Jordan was a baby I went to hear one of your BLOOM speakers. And there was a young woman there, Crystal, who said that when she was young, she didn’t know swimming was for fun. She thought it was just therapy. It broke my heart, because I didn’t want Jordan to ever feel that way. That was one of my turning points. When you’ve almost lost your child, it changes your focus.

BLOOM: I heard that you had lots of fun with Halloween.

Cheryl Runstedler: We dressed him up in the NICU as a Chippendale dancer. He was naked with a diaper and a bow-tie. He missed two Halloweens because he was at SickKids, but the year before he died he was a pirate. I painted a beard on his face and he wore dreadlocks and nail polish. This year I wanted to make him a bobble head, because he has no head control. We made fun with the situation, because that’s the kind of people we are.

BLOOM: What advice would you give other parents?

Cheryl Runstedler: For me, I just loved my kid and I didn’t care what people thought of him. I didn’t care about the stares. I didn’t get offended because I took everything with a grain of salt. Life is not perfect. I grew up on a farm. I had a simple upbringing and my parents instilled in me that each day is a blessing. We don’t know how long we have. 

Before I had Jordan, I’d had a number of miscarriages. It took four-and-a-half years to get him. I was on upside-down bed rest when I was pregnant, and it was a huge struggle to have him make it. Nobody chooses this life but it was the life we were given, so we had to make the most of it.  

Life was good and every night my husband and I would turn to each other and say: 'We’re so blessed to have him.' Even now, as I’m going through the [worst] part of raising a child—having a child pass—I tell myself 'We could have only had him for 10 days, and I had him for five years.' I have so many life memories of things we did together and these are the things I cherish now.

Jordan with a "mini-me" made by Feel Better Friends 


This might be the best post I ever read. If only everyone had your outlook and attitude. What a lucky family you are to all have had each other's company and now the wonderful memories with no regrets. Kudos to you! May your spirit catch on to others! (Especially the negative professionals).