Friday, February 28, 2014

TIP of the WEEK: Loving Someone Rare


Your child is not their IQ score or their new diagnosis from a recent psych eval. She is not how many steps she can take at the age that some other children are when they take their first steps. He is not his tantrums or his scars from picking. Your child is not a problem or something to be fixed.

She will encounter love and joy and friendship and she will also meet those who are mean and unfair and ignorant. He will soon find out that some days are great and other days are really, really bad. And that's okay. Not everyone will like him and others will love him as if he was their own. Teach them to see the good in every day, even on the worst days. Teach him by example. Teach her by being strong for her but not by solving all of her problems for this will only teach her to be dependent and to look to others when she has the ability to do for herself.

You have a child that not everyone will understand and you will fight more battles than you can count but it will be worth every step because in the end you will have a confident and capable child who will most certainly exceed all of your expectations providing that you resist the temptation of putting limits on them in the name of protecting them. Today we celebrate rare disease day and it is a good reminder to embrace the differences and to learn from the unique, quirky and undeniable spark that comes from those who live and love in a way that makes the rest of us seem downright boring!

Patrice Carroll
Manager of PWS Services

Related Posts:
International Rare Disease Day
Latham Attends National Organization for Rare Disease Gala
Raising Awareness


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