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Broken Heart Syndrome

24 May

Although I am currently in remission I was reminded this morning that I still suffer from Broken Heart Syndrome.

When I logged on Facebook this morning I had read a status update written by a friend taken from another PWS friend.

So thank you Rachel Fink Johnson for putting these beautiful words together.

I changed the name to Blaise as I made it my own:

A small deletion on Blaise’s paternal 15th chromosome wreaks havoc on his body in so many ways, many I have shared in these posts, some I have not and some I have just alluded to. One symptom that I have alluded to but may not have explicitly stated is Broken Heart Syndrome, hopefully not in Blaise, but mommy definitely suffers from this due to this missing piece of DNA. Broken Heart Syndrome is the heart ache experienced whenever your child is not performing at an age appropriate level academically/socially/physically. It also flares up whenever other parents talk about weddings, college or any similar future planning. Some may experience a flare up of Broken Heart Syndrome for unexpected reasons or at unexpected times, like at an amusement park or in the middle of your work day. Broken Heart Syndrome is a very unpredictable disorder and is characterized by sudden and extreme pain in your soul. Broken Heart Syndrome occurs most frequently when mommy realizes that Blaise REALLY does have PWS. Today is the 23rd day of Prader-Willi Syndrome Awareness Month. Thank you Rachel Fink Johnson, you put into words what I have been feeling for a very long time xoxo

We don’t often recognize our own sadness or human-ness because we are too busy being the strong mom or strong dad to these “special children.” We don’t often take the time to acknowledge that we do indeed cry when we are alone and that we sometimes struggle to be happy for our friends with “typical” children. WE ARE HUMAN! I am on an upswing right now feeling great, however when school starts I think I might have a BHS flare up myself. When the reality kicks in that Blaise won’t read or write at the same level as his peers. My BHS flares up when I think of the other kids not understanding him because of his speech delay.

I will always stay strong for him, be strong with him, and walk by his side. I will do this for both of my boys. Tonight we had a conversation about loving speech. How do we practice loving speech towards each other and ourselves. I am raising two boys who see a mommy that loves herself and two boys that are learning to love themselves as well. So when the days come that somebody practices that “not loving” speech with them, they can stay grounded and let it roll right off of them.

I really wanted to post this not only to honor PWS awareness month, but to honor all the “Special” parents and caregivers out there who make it their lives to see these children have the best chance at a “normal” life.

My hat is off to all of you.

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7 Responses to “Broken Heart Syndrome”

  1. barbarapotter May 24, 2012 at 7:32 pm #

    My heart is one with yours and what we feel for our precious Blaise.

  2. icanseealotoflifeinyou May 24, 2012 at 7:35 pm #

    Lovely, lovely, lovely.

  3. Allison May 24, 2012 at 8:27 pm #

    Nicely said. Thank you Rachel.

  4. Jo Ellen Corcoran May 24, 2012 at 10:26 pm #

    you’ve gotten me two days in a row!! No kidding.. just an hour ago I was sharing with my husband about how it seems like when I feel really relaxed and peaceful…. then, there it is.. the aching, hole-in-the-heart feeling…My first reaction was to brace myself and my heart… but then, I remembered what Frank suggested… when you want to brace yourself, turn it around to Embrace yourself… so, I’ve been embracing my heart and then I read this… Love You, Baby.. thank you.. thank you… thank you.

  5. Renay Harp Compere May 25, 2012 at 1:19 am #

    awww, so sweet. my heart still aches and i do allow myself to feel sometimes. most times though i just push it down deep and get on with the day, week, month… the pain is not always right there on the surface anymore which allows us warrior moms to be strong for our babes.

    Thanks for sharing…
    xo Renay

  6. ealeuenberger@hispeed.ch May 25, 2012 at 5:00 pm #

    Many thanks – as my child, though not suffering from PWS I do suffer from BHS due to my daughter’s own personal “syndrome” which results in similar symptoms… and I have been really suffering from a strong flareup of BHS lately as she faces first grade and we grapple with all the parenting decision-making around learning disabled vs. regular schooling that will drown her, social disorientation etc. and schools that won’t support her, etc… so your empathies are greatly appreciated…
    it if often a very lonely road… and one we realize we have just set out on, it is a long road ahead…. bracing ourselves and hanging on to moments of re-encourangement as this…
    🙂

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