Tuesday, December 14, 2010

'I've learned not to take anything for granted'

















The December issue of BLOOM goes to print this week and includes a series of stories about parents raising more than one child with a disability. I wanted to share with you this interview with Dana Florence of Toronto. Dana's triplets were born three-and-a-half months premature. After months in hospital, where they survived complications, Brody, Taylor and Cole finally came home. At 10 months old they were diagnosed with cerebral palsy. Dana inspires me! Louise

BLOOM: Parents experience a gamut of emotions when their child is diagnosed with a disability. How did you feel when your three children were diagnosed with the same disability?

Dana Florence: I was a teacher, so I knew what they were supposed to be doing in terms of milestones and my children were delayed. The red flags were there, but I don’t think anything can prepare you for receiving the diagnosis. It was a triple for us – triple the heartache. Because your vision of what will be for your babies changes – or you think it might change – in that moment, and your whole life flashes before you. I cried a lot and my husband was devastated. But when you go home after the diagnosis and you look at your children – they’re your children. What are you going to do? I couldn’t continue to cry all the time. I needed to move forward and do what’s best for them. I didn’t want to let this diagnosis define who they are going to be.

BLOOM: How did you move forward?

Dana Florence: I’m a doer, and I had to figure out how we can deal with this. That’s when we started looking into clinical trials in the states. I became very fascinated with stem-cell therapy and a clinical trial at Duke University with cord blood. We saved our kids’ cord blood at birth, but because they were so premature they didn’t have enough to meet the study’s protocol. I spoke to doctors and I felt like ‘warrior mom’ trying to find something more than typical early intervention to help my kids. We have SickKids and Holland Bloorview – some of the best children’s hospital in the world – in our backyard. In speaking to people, I learned that the issue holding back research was money. That’s when the lightbulb went off and we developed Three to Be, an organization that raises funds for research into children’s neurological disorders.

BLOOM: What did you get from your involvement with Three to Be?

Dana Florence: Three to Be was a huge game-changer for me. It allowed me to channel my energy towards something positive and made me feel like I had some control over an uncontrollable situation. I have such hope that the funds we raise will support research that could potentially make a huge difference for my kids and other kids who face similar struggles.

BLOOM: What tips would you give other parents raising multiple children with special needs?

Dana Florence: A huge thing is to learn how to accept help and be okay with it. We have two caregivers with me because my kids need one-on-one. I feel so blessed because we have such a supportive family. Every Friday my family and my mom-in-law come for dinner and everyone helps out. I’ve learned that I can’t do this myself and whenever I try to be too much of a super woman, it’s not good for me or the kids because I burn out. The way I justify help is that it’s a good thing for everybody. The second thing I’ve learned is that we really are stronger than we think we are. If you’d told me a couple of years ago that this would happen, I wouldn’t have thought we could survive emotionally. But you just do. And third, and most importantly, I’ve learned not to take anything for granted. Life can really throw you curve balls and it’s how you deal with them that defines who you are. We celebrate every little thing that is positive now. Ours is a different life than what I imagined, but I love my life. I love my family and my kids more than anything in the world and they’ve taught me more than I could have imagined. They’ve helped me reach a potential in myself that I didn’t think was possible.

BLOOM: What do your children enjoy and how do they interact with each other?

Dana Florence: All three have different personalities but they really love each other. They like to be silly together. If one is upset, the other will get upset. They’re very in tune with each other. They love swimming, family time, playing with toys and, of course, Barney.

Learn more about research projects on stem-cell and robotic therapy at Three to Be.

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3 comments:

Wow. Thank you for sharing this interview with such an amazing, powerful mother and three beautiful little ones. I wish her continued courage and grace which she appears to have so much of!

Doesn't she? I'm still hoping to meet Dana's little angels on one of their visits to Holland Bloorview. I am always looking for how other people cope with what life brings them and how I can apply what they've learned to my life. Thanks Dana!

Hello there. This may be a bit off topic however it affects many families. We have a four year old with autism we are trying to potty train and a soon to be 3 year old with ADHD who isn’t trained yet. They both disrobe and play in their diapers. We actually invented some clothing that helps the situation. It is an escape proof pajama called The Wonder Jumper and it is a romper sleeper that zips in the back. Our company is called iKids Fashion www.ikidsfashion.com thanks a lot!