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.

 Pia Prenevost


I had to repost this here! I read this and have not been able to stop thinking about this post. It has touched my soul as I am sure it will touch many of our WHS parents!

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5 Responses to An Open Letter to all Professionals

  1. Michael says:


    What a great note.

    All doctors should be made to read this every time they have to deal with the parents of a special child.

    Very Very well said.


  2. Gabriel says:

    Simply wonderful!!

    Althought I’m not a parent of a child with this condition, I can’t stop thinking about my cousin and our little princess. And I’m trying to help as many as possible to make their lives a little less hard.

    Any word can be hard to listen, but if it can be said carefully, maybe the damage is smaller and easier to handle.

  3. Shelly P says:

    I am a grandmother of a Wolf-Hirschhorn child. I have only known about the condition for4 days. I am glad to see it is alright to be angry or lost. I am in arage over this and feel so helpless. My baby is recovering from open heart surgery from last tues and is 9 months old and my only granddaughter. I never knew this existed before and am devastated.

  4. BabyLiam says:

    To you grandma i would love to speak . A great great mother you are going to be . As a mother to babyliam with whs it is hard and every day a new obstacle has to be overcome but whats wonderful is that your grandchild has you to fight those obstacles for her you need to be strong and warm hearted to be able to endure what the future holds maybe stares rude questions and comments everywhere you go . But believe me when i tell you this the rewards are so great that they will lift you up and you wont even notice the bad incidents . I have a mom that doesnt want much to you with babyliam she feels he is a hopeless cause never has she taken him to the park or even held him so i just want to tell you i would of love to have a mother like you . the first 2 yrs will be hard but it will get better and you in your heart need to believe that and enjoy all the momments and give your grandaughter all the love and support you can that will help her lead her path to reach her milestone because only you and your family can if not you then who? no one can like you. God bless you I will be praying for your grand daugter and your family marry christmas and happy new year

  5. Shelly P says:

    Thank you to BabyLiam for your kind words. I am still sad and worried but being aropund my granddaughter over the holidays made me feel better. She is so very sweet and loving you can’t help feel you can survive the future. My daughter has a wonderful attitude and hasenabled me to release my anger a lot. We are looking at any of her achievements with joy and hope of more to come. Her recovery from the heart surgery has been good. She really is the best and sweetest baby and we have decided to do all we can to give her the best life possible. We will relish any new things she learns and love her with all my might. Thank you for your understanding and your love. Happy new year to you and yours also and May God Bless.

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