Dear well-meaning friends, family, therapists, doctors, and strangers…

I love your curiosity and concern. I love YOU. I love talking about my daughter. She is an extraordinary person.

I want to tell you something.

She can hear you.

Not only can she hear you, she can understand the words you are saying about HER.

Not only can she hear you AND understand the words you are saying about HER, she can answer your questions about her because she is right HERE.

I cannot answer one more question about her hands. I can’t.

Do you know her skull has been taken apart and pieced back together and my mama heart has been dissected and sutured whole, sloppily, over and over for the past 4.2 years? Do you know we have not had a week free of appointments or procedures or therapies or surgery or consults in 1,527 days? Do you know we have never been ANYWHERE without stares or comments or WAY TOO BIG SMILES in her whole life? Have you ever thought that your child’s heart might explode from a tickle?

Their eyes may protrude too far and rupture from a fit of LAUGHTER and glee?!

Have you ever wondered if that glassy look was sleepiness or destructive intracranial pressure? A stomach bug or enlarged ventricles? Silliness or seizure?

Do you wake in panic, and nauseous, crawl to your child (2 feet away yet still hooked to TWO monitors) praying they are alive? Have you watched your friends bury their babies? Do you know what the pediatric ICU looks like? Do you know the hospital menu by heart? Do you ever feel calm?

This is truth. I cannot breathe about it. I cannot explain to you- in any way acceptable to the depths of me- how this feels in the real deal flesh. I am devastated. It is like an irreparable tear in a watercraft that MUST HOLD. But it just can’t. I will always be taking on water. Bailing as fast as I can. Sweating and exhausted. Drowning.

Today I walked the halls of the hospital and lied to my baby. I told her “I didn’t know that rubber band around your arm was going to bite.”

I knew. I felt nauseous for weeks. I put it off as long as I could. One small blood draw – she’s seen so much worse. But this happened in my arms and I lied. I lied. Because I am the one who carries her in to these nightmares. I pull her sleepy and soft from her cozy white bed and I wrap her in blankets and hand her over to scalpels and needles and drugs and terror.

I am broken in ways that you will never, ever come close to understanding. I am treading treacherous waters and I know I cannot swim. This is fear.

I remember a time when I begged to feel something. Anything. Pain. Regret. Remorse. Desire…

This feeling now, the one that settles in against necessary breath… this constant and familiar beating – it is sufficient. It is everything I ever imagined feeling to be and more. So much more. More “more” than I can pull words for. It is too much and just enough to keep me here.

Do you see her frustration? Her anger and impatience with you and your eyes and your wondering? She does not need normal or full function or aesthetics. She needs real. She needs love. She needs eyes that have not been turned, time after time, away from difference.

So sit in it. Sit in your discomfort. Sit in your need for “normal”. Sit in your questions of when and how and where and how much. Sit there and imagine what it would be to be deduced down to some wrong thing that could be fixed but wasn’t fixed just quite yet.

Sit there and and say it. Sit there and ask her what she will be.

Just today she told me she can’t wait to be a mother and a nurse and a big sister and a firefighter.

Stop looking past her and asking me questions that I cannot answer. Her name is Poppy. She is four.

She can hear you.

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22 thoughts on “Dear well-meaning friends, family, therapists, doctors, and strangers…

  1. I’m a cranio mom myself and wife, both my husband and my son have cranio. I totally love your article here. I feel the exact same way. Our son so far has had 7 major surgies in his short 11 years, with no end in sight. Lots of love to you and your family!

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  2. Noelle, thank you for sharing and please know know the numerous prayers for not only Sweet little Poppy but also for you as you help her cope with hearing questions that even adults would not be able to cope. At some point as your time allows, your ability to write with such feeling will be so helpful to others who are facing such mountains you have had to scale. What a talent God has given you to express yourself so eloquently! I know you understand that people do not mean to be hurtful, but just don’t have the depth of your understanding of life experiences. Hang in “there ” for Poppy and for Papa Keith. Love you girl.

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  3. This little beauty looks just like my Jadah! She was born with Apert syndrome. My husband actually thought one of your pics was our daughter. Loved this article! Thank you for sharing your story

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  4. You have a beautiful little girl. I won’t insult you by saying I know your pain I don’t. But from what I just read you are an amazing mum and you show so much love. I know a fabulous little boy who has apert syndrome. He has has so much surgery. He is doing really well. Take care both of you xxx

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  5. Poppy is B.E.A.U.T.I F.U.L! Poppy YOU ARE BEAUTIFUL! I love that your heart is full of dreams and your mama is right by your side! That’s where I am with my girl too! My beautiful daughter may not have the same issues, but none the less I get it! This moment in your life stinks! Seen more hospitals than playgrounds! But don’t ever lose that hope and your dreams!
    I am in healthcare as well and have ALWAYS said, my patients can hear everything regardless if they can show it. So let’s talk as a group. They know we are right here! Include them!

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  6. I absolutely love this! We have a son, Joshua, who just turned 9, who has Apert Syndrome. He is baby boy #3 out of our 4. He is the most amazing Superman I’ve ever met. He has had several surgeries and I just thank God every day for choosing me to be his Mommy! I shared your story from a Facebook friend and just wanted to tell you Poppy is amazing and has an amazing mommy as well. You put into words what is so hard to explain. We are lucky to have the people and doctors in my life that I do, they are an awesome support system for us all, but I know the fears and tears you feel as well. Thank you for this!!!

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  7. My boy’s a cranio/cardio kid, and my daughter has a list of diagnoses as long as her arm, and they both adore Poppy. We’ve only met a few times (’round Christmas, oddly), but that connection is there. I know whereof you speak, Mama. With us, it’s may oldest who *knows* that people are talking about her, and her brother, and and isn’t going to put up with anyone anymore because she has learned she doesn’t have to, and it is inspiring to see the frustration and sadness become a willingness to take on ignorance. My son though, still doesn’t know that anyone has ever thought a negative thing, about anyone. Ever. Which is bittersweet in it’s own way.

    This summer, I need to take you (two) out for coffee.

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  8. My husband has a brain injury that has left him disabled and unique looking. We get the way too big smiles, the well-meaning curious conversations and questions. The questions directed at me rather than him. He. can. Hear. You. Is what I always want to look deeply into their eyes and say. Even friends and family members do it. They just don’t know. They can’t just let it be awkward, they can’t just sit in it. We will show them how, some of them. And they will be better for it.

    We can do this hard life. One second at a time, mama. Solidarity. Sending love!

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  9. Noelle your words touch me to the soul, you and Poppy are each other’s breath of love and life, some will never know the feelings you share, but some of us do and want to share this with the world, we want to help to see them understand that the real meaning of love and sacrifice for that love is deep and endless and wonderful, you and Poppy are much loved.

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  10. Pingback: When Poppy says she’s leaving… | poppy seeds

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