Our Challenges Are Opportunities To Be Better People, Says PWS Mom

our-challenges-are-opportunities-to-be-better-people-says-pws-momA special contribution by guest blogger Laura Achlabach

Laura shared her story via our Stories of Hope questionnaire.

How has your child exceeded your expectations?

Anthony stopped using his g-tube before he was even 4 months old, and now he is eating solids just like any other little guy.

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

When Anthony’s MIC-KEY [feeding tube] button needed changed, I took out the old one and put in the new one like a boss! If I sit down and write out all of the logistics of caring for my little guy, it looks impossible, but somehow I get it done. It makes me feel confident that I can take on almost anything.

Who has helped you in your PWS journey?

Other PWS parents are your tribe — they get it. They know what you’re going through and want to help.

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

Love them — they are beautiful, precious gifts. We’re the lucky ones who get to love them.

What gives you hope for the future?

The research that is being done to help make life better for our kids gives me so much hope. Knowing we have a team — we’re not in this alone.

What are you thankful for?

I’m thankful for the love and support of all of the people who help us care for Anthony.

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

To inhabit the present moment, to build life around experiences, not food traditions. To recognize that Anthony’s PWS is a diagnosis, not a definition of who he is. To see the challenges we face as opportunities to be better people.

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.”

This is very true for me. Having a kiddo with PWS has made me master new skills in nursing, therapy, and advocacy, and will require me to become a more resourceful and creative cook, too.

What does this quote mean to you?

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

Don’t underestimate your kiddo — Anthony amazes me every day.

 

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Topics: Stories of Hope

Susan Hedstrom

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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.

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