I Learned from My Daughter That Life is About Love

I Learned from My Daughter that Life is About Love.jpgA special contribution by guest blogger Chelsea Balumas

Chelsea shared her story via our Stories of Hope questionnaire.

How has your child exceeded your expectations?

Sienna is so strong. She is such a fighter, and she just keeps surprising us with her strides in her development. She was our first child so we don't have another experience to compare to, but the diagnosis has not kept her from enjoying life and participating in the things that her friends and family like to do. She is such a trooper and, she just keeps teaching us to never doubt her abilities.

Who has helped you in your PWS journey?

We have a strong support system filled with family and friends and a great medical staff at OHSU and early intervention.

Describe a time you surprised yourself with your ability to do the impossible.

Getting through the first few weeks after the diagnosis (4 weeks old) seemed like an impossible task at the time. Getting the devastating news could have spiraled us into depression, but we kept positive with great support from family, friends and each other. Loving Sienna and helping her progress each day into the happy kid she is now is what kept us positive-minded and motivated.

What would you say to a parent whose child has recently been diagnosed with PWS?

It gets better. You might feel like the world is crashing down on you, but once you fight through the grief that it won't be exactly how you pictured it, you realize you were given the best gift in the world. Your child will surprise you in ways you never could have imagined and will bring you so much joy. Lean on the resources that are provided to you, surround your family with love, and hold out hope that one day a cure will come for our angels.

What gives you hope for the future?

Medicine is advancing so quickly and progress is being made towards a treatment for people with PWS. There are so many success stories out there of people with PWS achieving goals and doing amazing things. I know that we are giving my daughter the best chance she has to lead a happy life, and that is all a parent can ask for.

What are you thankful for?

I am so thankful for the love that my daughter gives to us. She makes us so happy every single day and teaches us so many important things about life. I am thankful for the outpouring of support from our family and friends since she was born and for all the providers that help her gain strength and necessary skills to live her life to the fullest.

What positive life lessons have you learned from having a child with PWS?

Life is too short. When we got the diagnosis, I felt devastated. It almost felt like I had lost a child because the picture of what I thought her life would look like was gone. But I learned from her that life is about love and she has so much of that to give. As long as she is happy in life, I can be at peace as a parent.

What does this quote mean to you?:

“Until you have a kid with special needs, you have no idea of the depth of your strength, tenacity and resourcefulness.”

Life as a parent is tough. There is no manual, and it can be so stressful. When you add the extra challenge of a kid with special needs, you feel like it might be impossible. As a working parent, I struggle to find balance and routine, which is so important for our kids. But somehow, we have figured it out. You adapt. You make your child the priority no matter what and you just keep going.

What does this quote mean to you?:

“Most people see what is, and never see what can be.”

It's very overwhelming when you get the diagnosis. It's hard to look at the positive in anything. You feel like something was taken from you, and you resent it. Then, after awhile you start to see how life can be after the diagnosis. You start to figure out routines and things that work for your family. You see ALL the positives in your child and don't even notice the negative effects of the syndrome. You fall in love with them more than you knew you could. It's hard to see what could be when what is right in front of you is so hard, but it can be the most rewarding thing when you finally do.

Do you have a story of hope to share with others about your experiences with PWS? Send it to us!

Understanding PWS - Slide Deck

Topics: Stories of Hope

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the natural history of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she hosted her first One SMALL Step walk in 2010 and began the development of the One SMALL Step walk program which now raises over $1.5 million a year for PWS research.