She's Shown Us Our Own Strength, Determination, Love and Acceptance

shes-shown-us-our-own-strength-determination-love-and-acceptance.jpgA special contribution by guest blogger Anne Fricke 

Anne shared her story via our Stories of Hope questionnaire.

How has your child exceeded your expectations?

My daughter, Freya, is almost 5. She is strong, healthy, friendly and has made many leaps in her life. She did not walk well, or as a way of getting around, until she was about 2 1/2. Now she runs, jumps, goes for long walks, bounces like crazy on the trampoline and does great in her dance classes. She is now coming into the world of conversations and I see improvement every day. Her sentences are getting longer, strangers can often understand her and she loves to sing and recite simple poetry.

Though we have had issues with food that is out on the table or counter, we have not had to lock anything yet. I have seen her turn down candy because she knew it was not good, though she did not see that I was watching. She is such a magical, friendly person whose capacity to make people feel loved is inspirational. I hear from so many friends, teachers and therapists that they adore her because of her friendly, engaging, open, loving nature.  

Tell us about a time when you surprised yourself with your ability to do the impossible.

The whole experience of having a special needs child has shown me the strength, determination, love and acceptance that I and my family have; from the unexpected cesarean; to the fragile, lethargic baby; giving my first ever injection to my 11 month old, endless therapies and fighting insurance bureaucracies ... it has been a challenge but one that my family and I have met with love and determination.

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

There is help and there is hope, the future for our kids is changing for the better.  

Who has helped you in your PWS journey?

We have a fabulous community of family and friends who have been crucial to helping us navigate these past few years.  I would not feel nearly as hopeful as I do without the advice and encouragement of Dr. Jennifer Miller. Her knowledge of PWS and the hope and love she feels for our kids is incredibly comforting and inspiring.

Anne has also written the following poem, which she often shares with other parents:

Kintsugi / Gold Joining

Kintsugi is a Japanese art form using gold, silver or bronze to join broken pieces of pottery; treats breakage and repair as part of the history of an object, rather than something to disguise

Like veterans home from a brutal war we seek each other out
because ours is a truth that few understand;
what it feels like to hear that your child is broken,
to hold them and feel a life force so weak you fear their death,
to sit in a sterilized room with a stranger telling you who your child will be
based on one tiny, miniscule deletion of their DNA
and then to be cast adrift on a turbulent sea of doubt and fear and know that
you must hoist the sails and guide this vessel home despite your ignorance
of the prevailing winds
We have lived through the battle
of having our child’s future shattered in that one blazing moment of diagnosis
our shock-filled eyes slowly registering the shimmering glass-like fragments
scattered about our feet,
tears mixing with blood seeping from wounds suffered in the explosion,
wounds becoming scars, there to remind us always of this moment.
And we have lived through the aftermath,
the dawning realization of the destruction at our feet,
the undeniable knowledge that it is now our job to pick up the pieces
one-by-one,
fit them imperfectly back together
bind them with gold and glue,
determination,
tears and small triumphs,
so that our child’s future may now be a work of art,
a sculpture of love to show them they have a place in this world.
As my daughter and I walk these halls in the
myriad of doctors and specialists, I see the new
parents with their babies,
the shock, the sorrow, the worry etched deep
into the lines of their faces
as we step carefully amongst
the broken shards of their child’s future.
I want to tell them of my daughter,
and her life,
the way the sunlight is refracted so beautifully
off the broken pieces we have
bound together.
But there are few words to cut through the
anxiety and grief,
few words that do not sound empty;
So instead I smile and let my soulful daughter go to them
and look upon their baby with the sincere, open delight
that brings people to love her so easily,
I smile and hope they see what I see,
the beauty of the perfect imperfections of
someone who was never, never truly broken.

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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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