My Son Is More Than PWS: He Is A Miracle

My Son Is More Than PWS - He Is A MiracleA special contribution by guest blogger Heather Osterman

Heather shared her story via our Stories of Hope questionnaire.

How has your child exceeded your expectations?

When Max was born, our diagnosis was missed. We just lived with trying to help Max with his challenges, not really understanding what was happening to our son. In a way, I look back and maybe that helped us. Max was in failure to thrive, he was fed through a tube, he couldn't hold up his head, he was so floppy and sad looking. As we finally left the hospital after 2 long months, we were no closer to answers but were starting our journey to helping him overcome. We focused on therapies, fought with and for him, and he kept showing us he was not going to lay down and take it, so neither were we! At almost 2 years old, we were finally diagnosed with PWS.
 
Just as we thought we were making headway and he was going to beat whatever was going on with him, a very large hammer was dropped on us. We went backwards emotionally. Just when we thought he was just going to overcome these challenges of his youth and they wouldn't follow him for his entire life. But, Max ... he still said no. I will walk, I will talk, I will run and play and learn, and have this amazing sense of humor. I will spread joy and happiness to everyone I meet. His gifts just keep on, every single day. He is truly our hero.

Who has helped you in your PWS journey?

We are so lucky to have family and good friends surrounding us. Family has been so on board with changing our get togethers to accommodate Max's dietary needs, to make sure he is not forgotten or put in harm's way in that regard. Our friends have not shied away, but showed us support emotionally and by contributing to our fundraisers and as volunteers at all of our events. My mom has been my true savior, though, as she stepped up in every way, even when she was scared to learn to tube feed him, how to care for him, so we could get away either for a night or a week. The bond that has formed between Max and his BA has been beautiful to watch.

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

When Max came along and brought with him a lot of medical needs, we were beyond petrified! The idea of changing out NG tubes, checking to make sure it was in the right location in is belly before each feeding, then moving on to a G-tube in his stomach, and to feed him, and on the go, around town and out of the country! We tried so hard to live our life, while keeping Max safe. But, everything was so scary, and I cried all the time wondering if I could do this. The amount of medical needs, especially early on (surgeries, sleep studies, tube feeding, therapies, tests, doctors) was just beyond me. Now, I look back and think, wow, we just "did it"! We just knew there was no choice, so we held our breath and listened to what we learned, took him home and figured it out together as a family.

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

I would say never listen to the doctors when they tell you there is no hope. When they give you a list of what they will not be, you know that there is so much that they will be! I remember sitting in Genetics listening to the doctor rattle off horror after horror, with really no emotion or understanding of the individuals today. Just know, they will accomplish, they will love, they will shine their own light. And it will be a miracle.

What gives you hope for the future?

FPWR! After my husband and I did get diagnosis, we just sat with that for a time. I went online to see what was going on in the world of PWS. What could I do, other than sit there feeling sorry for myself! I found FPWR and just sent an email, 'what can I do?' And the community and hope I received has been life altering from that day of diagnosis. With the families of those with PWS in this organization all stepping up, and the amount of research that has been able to take place, I just know we are all in this together, and that no one will be waiting for salvation. We are planning on finding it ourselves!

What are you thankful for?

I am so thankful for the community. I am now part of a club that not one of us wants to be a member of, but without it, I would not have met the most amazing and inspiring people. We are all a family that is there for each other in heartache, and cheers for each other in triumphs! What more can you ask for?

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

What have I learned from having a child with PWS? That he is more than PWS. For a long time, everything was about helping him medically, to make sure he walked and talked and has his correct diet and more, but I have learned that I am now a different person. I have learned that the small stuff in life is just that. I have learned that the petty things going on are just that. I just have such a deeper life understanding and have learned to slow down to relish the day to day. To see the miracles of all kids with disabilities. I also used to be afraid of different, just out of fear. But I have learned that they are the real treasures.

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 quote I take at its face value. Honestly, before Max, I would have never imagined speaking in front of hundreds of people at events and speaking my heart. I would have never imagined becoming a fundraiser. I would have never imagined me searching out doctors, firing doctors after realizing they are flawed, flying around the country to conferences looking for answers. I can't believe the strength I found within myself to just live the day to day to help Max, keep my family intact, and then know that it is up to us to advocate. And just not stop to think about it anymore. I just do what I need to, and the fear I felt everyday in doing all of these things is long gone!

What does this quote mean to you?:

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

I have always been a glass-half-full person, and I find that so many are the opposite. I know that when Max was diagnosed, I briefly became a glass-half-empty, and from time to time, slide that way. But, I know that I have to be part of the solution, part of the hope in order for change to happen for Max and everyone living with PWS. If I just listened to those doctors all those years ago, I have no idea what Max would have been able to accomplish, because it starts with us.

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

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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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