Your Child With PWS Can Have a Beautiful Life

your-child-with-pws-can-have-a-beautiful-life.jpgA special contribution by guest blogger Loraine Hernandez

Loraine shared her story via our Stories of Hope questionnaire.

How has your child exceeded your expectations?

With the horrible scenario at the hospital when she was born, I really didn't have any expectations. She got out of the hospital, we didn't have any answers but she seemed a little better. I didn't know what to expect. I got the diagnosis when she was almost 3 months old and my world was shattered. So from not having expectations, to see her how full of life she is now, saying that she has exceeded my expectations doesn't do her any justice. I can say that at only 9 months, she is a fierce, persistent and determined little girl.

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

What has surprised me is how all those "mother instincts" suddenly appeared. Mila is my first child, so I have no previous experiences (besides babysitting). When she was discharged I was totally terrified because she had no feeding tubes and wasn't able to drink from a bottle. When we got home and I had to feed her, she wasn't doing anything, and I really didn't want to go back to NICU. I was feeling frustrated and defeated, but then remembered that Mila took the carnitine at the NICU from a syringe. I went to her kit and found a plastic pink syringe, and I started to feed her with that. It worked! It would take me forever, but I was able to feed her. She started gaining weight and we never went back to the NICU. It is truly amazing how all of a sudden you know how to take care for your child. How you can stay strong when you carry your child and can wait to have a meltdown far from her so she doesn't feel your sad energy. For me, that is doing the impossible. You never know how strong you are, until being strong is your only option.

Who has helped you in your PWS journey?

My family and my friends have been of great support. But what has helped me the most, is all the wonderful people I have met through Facebook thanks to FPWR. When I found out about Mila's diagnosis, I felt that I needed to be alone that night. I needed to cry and scream. Then I went to Facebook and my search words were "Prader-Willi South Carolina." That's how I came across a post from Gwyn Spearman about her struggles feeding her daughter. I wrote her a message and that opened a door for hope in my life. She put me in contact with Jaelle Laplante (who has been of great support and a really good friend through this process). Then I was added to a support group for parents who have PWS infants and toddlers. Because of that I know about all the research being made to find better treatments; I can witness wonderful stories that give me hope and I can rely on people that can help me stay strong.

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

To take one day at a time. To be the best version of yourself around your child and love him or her with everything you have. That is the most powerful tool to help your child. When you do things with love, you push yourself to do things better and the better you do things, the better you will care for your child and that's how you are going to see him or she progressing. I would tell that parent that patience is key and that when you least expect it, your child will surprise you and will bring tears of joy. I will also tell that parent that there are no small victories and you learn to enjoy and celebrate everything your child accomplishes.

What gives you hope for the future?

All the research that's been done. I strongly believe that research is key. Without it, there wouldn't be proper treatments for this rare disease and I know that thanks to all the research that is being made, there will be more assertive treatments that can ensure an independent future for my daughter.

What are you thankful for?

I am thankful for my daughter. She came to change my life, she came into this world to make it a better place. She makes me happy, and all the people that surround her. I know she will accomplish everything she sets her mind to and I'm thankful that I will be in the front row to watch it all happen.

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

That you can find joy in little things. I've learned that being a special-needs mom can be a beautiful journey. I've learned to be compassionate with other people's struggles. Having a child with PWS has transformed me into a different person, and I like this "new me" better.

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.”

That you go above and beyond to care for your child. You will cry, you will scream but you will knock doors down and do the impossible in order to fulfill your child's needs.

What does this quote mean to you?:

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

Using PWS as an example, this means to me that most people see Prader-Willi as a disorder with no cure and a life full of struggles. But they don't see all the things that can be done to make life easier for our loved ones. They can have a beautiful life if you find the proper tools. Not seeing that is like surrendering before the race starts.

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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