Mom's Advice for PWS Parents: 'Watch Your Baby Fly!'

A special contribution by guest blogger Jennifer Terranova

moms-advice-for-pws-parents-watch-your-baby-fly-1.pngWe all have dreams when we plan a family. We all believe our babies will be the cutest, sweetest, most amazing little things in the whole wide world. We are all determined that our future little ones will achieve whatever their little heart’s desire. 

But when you give birth to a baby with a diagnosis, especially one which you have never even heard of, all of these thoughts swirl into one big pool of questions including: “now what” and “why us” and “can we even care for a baby like this?”.

These are all normal feelings, although at the time they may seem like unbearable thoughts strewn amongst untouchable clouds in the sky, and you are on the outside watching it all and slowly trying to take it all in, while at the same time trying to bond with this newest member of the family.

I gave birth to my son, Nicholas James, on what was probably one of the worst ice storms of any past winter, in February of 2015. Who would have ever thought that my third child would be born any differently than my previous two children. The next few nights would be filled with fear, confusion, doubt and a lesson in how much faith we had in ourselves as parents.

After the second night of not being able to stay awake to drink a bottle and after I witnessed what I thought was a seizure, Nicky was finally admitted to the NICU where the doctors ran a series of tests. He was found to have low muscle tone, extreme sleepiness, a high palette, inability to suck and a weak, raspy cry. When the diagnosis of Prader-Willi syndrome was confirmed about three weeks later, all of our dreams of what we expected our third child to be was gone within one gasp of breath that we took upon hearing the doctor’s words.

Even though it took a little while to wrap our brains around this diagnosis, at some point we decided that no, our little boy’s life will not be written according to scientific websites and textbooks and yes, our little boy’s life is worth as much as our other two children’s lives are. 

moms-advice-for-pws-parents-watch-your-baby-fly-2.pngSo we decided to fight. We decided to stop researching outdated, unreliable websites and we found organizations online such as PWSUSA and the Foundation for Prader-Willi Research. We decided to start speaking to other parents who were going through the same thing as us and we reached out to others in online Facebook support groups. We researched and met with the best doctors around to help guide us in right direction to make our little boy’s life the best that it can be.

More importantly: We decided to DREAM big dreams for our little boy. Nothing will stop him, if we believe it and we needed to instill that in him from the beginning, as we instilled the same in our oldest son and our daughter. We would be the ones to give him his wings to fly. “Hold fast to dreams / For if dreams die / Life is a broken-winged bird / That cannot fly” (Langston Hughes). And fly, he will. 

We decided to BELIEVE in our little boy, because he deserves the same belief system from us as parents as we put forth with our other children. We believe he can do the same as our other children, because he is determined and he is a fighter. Since birth, he has been fighting each obstacle that has been thrown at him. 

We decided to guide him in ACHIEVING anything he wants, whether it be his milestones now that may take a little longer, to which career he chooses as he gets older. 

moms-advice-for-pws-parents-watch-your-baby-fly-3.jpgIn May 2015 my children and I grew and released four butterflies into our backyard. One of the butterflies emerged with only part of one wing, making his entrance into his new world a bit difficult. Each day we would offer him nectar and watch him grow and, eventually, he became strong enough to fly on his own.

I remember comparing this butterfly to Nicholas at the time. Still as sweet as the others, still as determined to fly, still a living, breathing entity who just needed a little more guidance, love and care before being let out into the world.

Our babies are very much like this butterfly: a bit unsure at birth, yet determined to become strong enough to eventually fly into the world.

Believe in your baby. Dream big for your baby. Help your baby achieve great things. And then watch your baby fly!

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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