Let It Fall: A Guest Post About Coping With A Diagnosis

Did you know that February 29 is Rare Disease Day?  It’s also Jay Faulkner’s birthday.  Jay is a family man, editor, and friend who allowed me to do a guest post on his blog to raise rare disease awareness.  I’ll actually have a few posts there through the month, since my family and I seem to constantly hit the rare disease jackpot.  Williams Syndrome?  Check.  Alobar holoprosencephaly? Check check.  Postpartum eclampsia? My doctor’s didn’t even know it existed, but check check check.  Don’t worry, I’m not posting about that.  😉

This post is a chapter from the memoir that I’m writing about our journey with Williams Syndrome.  Jay wrote a delightful intro that made me laugh out loud.  It explains our cosmic bromance (I was also called an alpha male this week, too.  I think I need to wear more ruffles).  While you’re there, read all about Jay and how he discovered that he, too, had something physical to cope with.  You’d never know it, because he’s such a happy, enjoyable man.  It takes real strength to admit when you need help, and Jay took the plunge to do so.  Please swing by and read Let It Fall.

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4 thoughts on “Let It Fall: A Guest Post About Coping With A Diagnosis

  1. Mercedes, you have been through so much and remain so strong. I know it has been a struggle. It still is. You have the strength and wisdom to survive the challenges that life throws at you. I am so grateful to know you.

    Hugs,

    Ardee-ann

  2. I like that chapter, how you’ve written it. I like the focus on the feelings, and asking the reader to feel alongside you. I’ve had that panic feeling myself with my daughter, but for a more easily managed medical problem. If your whole book is written like that one chapter, it’s going to be a poignant tear-jerker. We’ll cry when you cry – happy or sad.

  3. You inspire me, and yes, I know you never set out to do such a thing. You’ve simply taken the hand given you and gave it your all.

    Although I don’t have a rare disease, I do know well how life can change in mere moments. I used to say life threw a punch and I forgot to duck, now I simply say I’m getting better at ducking.

    We live in the moments, whichever one we find ourselves in…I wish for love and peace in all the moments here and in between. Thank you for pulling back the layers and showing us the true of what is. I saw your love. (Hugs)Indigo

  4. ‘Clear eyes/full heart’ seems as apt a phrase as any to characterize the skill with which you convey the impact of having a child with Williams Syndrome. There’s a poetic poignancy, too, to rare disease falling this year on a date that only comes once every 4 years.

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