Tuesday, August 24, 2010

An Open Letter to All Professionals.

My Heart left my chest
In tiny jeans and t-shirt
Walks around, exposed.

Hello?

New teacher, or therapist, or doctor? Is that you?

Oh hello…

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…

You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….

You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you.  And we are disappointed in ourselves.  We are your harshest critics.  We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

30 comments:

Cheryl D. said...

Wow! Great post--very honest and full of pain.

meganlela said...

So very true to the real, honest feelings of how it really feels. Especially about the grief cycle.It seems we get to go through it over and over again.

Leightongirl said...

Beautiful.

Crystal said...

Awesome - thanks for sharing, Pia. That is so beautifully written!

Rebecca said...

Pia,

Absolutely beautiful! As a speech-language pathologist with a child similar to J man, I couldn't have said it better myself. Just when I thought I was done grieving, I come to another part of the grief cycle. It has helped me view the parents of the children I work with in a totally different way. Because now, I've been there. I am there. I get it. May I share this with other professionals I work with you just don't get it.

Pia said...

Sure Rebecca, I would be thrilled and honored it you would share it! I would love the feedback too!

Lynn said...

You are so speaking for me with this post. I would add family members as well as professionals to the list of those that should wake up every day and read this. I just so happen to be going through family stuff right now...people assume things that they shouldn't...that I'm OK and Audrey's totally cute and fine and it's really not all that bad. They still don't get it....the bruised heart may be different shades of purple from one day to the next but it always always hurts.

suelmayer said...

Pia, this is one of your best!!!! You put so eloquently into words my thoughts exactly. Would you mind if I reposted it to my blog at a future date, giving full credit to you and directing people to your blog? I need to get through the road trip series first. But then comes a discussion on schooling.

Avenues of Awareness said...

I truly loved this.

Carrie said...

Thank you for that - it is very true and real; having a child with Spina Bifida, a trach, g-tube, and ventilator...with as many victories we celebrate, there are still moments that my herat breaks.
Carrie

Allison said...

I hope you are OK with this, but I linked my this post to my blog. I gave you full credit, of course, but you said something so well, and that fits our situation so perfectly, I had to share it.

My blog is http://snsherpa.blogspot.com

Blinger1 said...

WOW. You hit it, right on the nail. Thank you. You not only spoke from your heart, but you also spoke from mine.

Second Chance Moon said...

Great reminder for us teachers. Thanks for writing it. :)

TMI Tara said...

I just love this and would love to share it on my blog (giving reference to you and your blog of course) -- kidzorg.blogspot.com. Please email and let me know if that is okay. kdizorg.blogspot@gmail.com.

Shannon said...

I am so glad I found this! I NEEDED it this week! I hope you don't mind, but I'm posting it to my blog www.bringinghomeourangel.blogspot.com with a credit link to your blog, of course. Thank you for this - it is beautiful!

Cindy said...

Beautiful. And so very true for so many different people and situations. I shared this on my Facebook page. I hope you don't mind.

Chrissy said...

I read this post several days ago and it has left a lasting impression on my soul. It was linked to a blog I follow because both of our daughter's have Wolf Hirschhorn syndrome. With your permision (and of course your name and blog site would be attached), I would like to give this to all of my daughter's doctors on a small card to keep in all of her many medical files! We have a group blog-www.wolfhirschhorn.org-and I would love to link this post to it as well! Sincerelt, Chrissy Rivera (mother to Amelia)

Pia said...

Please feel free to repost... just give me credit back and I am cool! And thank you so much for your kind words about it...

We are all members of the bruised heart club...

fiona2107 said...

Oh wow,

That was breathtakingly honest and remarkable.

You speak for so many of us.

Thank you :)

JMD said...

Fantastic post! Thanks, Pia. I liked it so much I quoted it both in my application essays for MSW (because whether I get in or not, I wanted the admission committees to know about it), and on my site spedpac.org.

Nicole Grant said...

I think all therapists should read these words. I am an OT working with children and I once was accused by a parent of spending too much time talking with them (the parent) and not 'fixing' their child during our initial consultation. I believe the relationship a therapist has with a parent is critical, and that a good therapist can only be of benefit to a child when their therapist and mum/ dad understand each other and share the same goals. I am a mum myself, so I can understand the parent perspective too. Thanks for sharing so openly.

Shelley said...

i've only just started this medical diagnosed journey with my soon to be 6yr old son, he was officially diagnosed on the 1st march 2011 so not even a month ago. U have somehow written exactly how i feel , it had me in tears as i know i'll be "that" parent that the doctors go "oh great she's back"

Thank u for writing this

Carolyne Thornton said...

Hi Pia, thanks for your post, I was very touched by it. I have a daughter with an Intellectual Impairment so I can relate to your words. I am also a student teacher and one of the subjects I'm currently doing is Supportive Learning Environments. I hope I can be one of those teachers that people like you can rely on to be supportive, caring and non-judgemental, as all teachers should be. Is it ok if I share your post with my uni peers? Carolyne

Pia said...

Thank you for your kind words and yes, feel free to share! :)

Christie said...

I read this out to all of our Speechies during our team meeting today...thank you so much for sharing. Christie (Noosa District Speech Pathology)

Kellie said...

What a well crafted post. I can feel - and hear - your pain. So open and so honest.

themodernparent said...

I think that it is why it is called a grief cycle...there is no end, there is no stop/start, it simply goes around and around. That is why as parents and professionals, we must try to remember that just as there are many downs to the cycle, there will also be times when it goes back up again, allowing us to gain the strength we need from these moments.

sueblimely.com said...

That is excellent, poignant and so true.

I hope that any professional who reads it reads between the lines and understands that their actions and comments have the ability to make the bruises worse or even restart the grief cycle. Talking for myself and other carers I know this is a very regular occurrence.

Anonymous said...

Pia
I read this many times like now. It is one of the most well-written, heartfelt pieces I have ever read. I read it when I come up against brick walls from the "professionals" who think they know better.
This and your "leeter to myself..." are awesome.
Thanks
Jo

Lauren said...

We are delighted to let you know that this post has been nominated in the 'Best International' post category of the SWAN UK Blog Post Awards (aka The 'SWANS')

Be sure to pop over to the SWAN UK website to grab some badges for these categories to encourage your other readers to also vote for you - make sure you let them know which specific posts have been nominated!

If you tweet the SWAN UK twitter account using the #SWANS hashtag with the URL of your blog posts and the category you have been nominated for we will retweet it for you and hopefully get you some new readers.

Good luck!

www.undiagnosed.org.uk

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