A special contribution by guest blogger Rebecca Krylow.
Rebecca shared her story via our Stories of Hope Questionnaire.
How has your child exceeded your expectations?
Joey is truly the most exceptional human being that I know. He is kind; considerate; self-determined; and quite funny! Did we wonder if he would walk? Yes. He did, close to 2 years old. Now, he's on the heels of his first Special Olympics track meet. Planning to run THE MILE. Did we wonder if he would ever learn to read? Absolutely. Now, he DEVOURS books - often checking out the max allotment at the local library. Joey is a cool kid. He has his own personality and he's comfortable with who he is, and he knows he has PWS. His confidence makes a huge difference - it propels him from challenge to challenge, from the valleys, back up to the mountain top.
Who has helped you in your PWS journey?
Joey has. He is an inspiration. Watching him grow and develop, and mature - he reminds us what a blessing he is. Supportive and flexible family, and friends, have also helped us grow into our identities as parents and as a family unit. Joey's therapists and coaches have also been so transformative.
Think of a time you surprised yourself with your ability to do the impossible - tell us about it.
We have been fortunate to only have a handful of battles with insurance companies over growth hormones. But, when we have, I am immediately reminded at how easy it would be to give up - to not call back, to not check in on the order, to not wait on hold from person to person, to not press on. It takes an incredible amount of stamina to keep going with those battles. And yet, each time I "win" I feel like a dang superhero. :)
What would you say to inspire a parent whose child has recently been diagnosed with PWS?
You might be feeling a sense of loss, and grief. If you are, that's okay. Sit with those feelings. Feel them. But soon, when you're ready, know that your PWS child will change you in ways that you can't predict now. Parenting does in general, sure - but special needs parenting, it's well, special. It will mold you into something that you can't predict now - but trust me, you will be thankful for.
What gives you hope for the future?
Having a front row seat in Joey's life. And, continuing to learn from the PWS community about the uniqueness of parenting an individual with PWS.
What are you thankful for?
The unique contributions that Joey makes to our family. He's also taught each of us lessons about being yourself and liking what you like, even if it might seem unpopular at the time. And he tries new things. And, I'm thankful for how much he loves healthy foods (he loves brussels sprouts!).
What positive life lessons have you learned from having a child with PWS?
That this too shall pass, and because it will, try to be in the moment and either enjoy it, or, after a maybe not so great moment has passed, reflect and learn from it.
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.”
Bingo! Funny, I started to comment on this before I saw the prompt. Joey has made me tough, and sharp. He's made me into the Mother that I am.
What does this quote mean to you?: “Most people see what is, and never see what can be.”
No one has a crystal ball. You can't predict the challenges, or the victories. That's what time does. It brings growth, and most of all, hope.
