Thursday, March 31, 2011


Congenital Diaphragmatic Hernia Clinic at Children's Hospital Boston was the first of its kind in the country.  Not that many hospitals concern themselves with leading the way in treating a condition that affects one in roughly 2500 births.  With roughly 50%  of those born never having a chance at survival.

I've always loved clinic.  Even in the beginning.  Dragging Owen and all his paraphernalia into the city every couple months as an infant. Twice a year throughout toddler hood. Yearly as a young child.

I'd look forward to presenting him to the Big Brains On Sticks:

Dr. Breatheright; Pulmonologist.  Greeting us with that day's chest x-ray in hand; throwing it up on the lighted doohickey on the wall.  Pointing out the little blebs of damage still evident.  But marvelling at the fact that he'd never been admitted to the hospital for a pneumonia, hadn't taken an antibiotic let alone a nebulizer treatment since his initial discharge.

Amazing for a set of lungs once compared to Swiss cheese.

Dr. Calories; Nutritionist.  Coming at us armed with Owen's latest height and weight and current caloric and hydration needs.  Adjusting his tube feeds accordingly.  Asking about oral feeding, but without concern so long as he was growing and gaining; which he always did.

The calories feeding his body and brain being very important. How they got there?  Not so much.

Uncle Rusty; Fetal Surgeon/CDH Guru/Miracle Wrangler/Regular Guy.  Always with a fresh green resident in tow.  The resident eager to meet the kid who on paper looks like a train derailed. Off a cliff. On fire.

Quick pokes and prods.  Quick reminiscing about hairy ICU ride.


"He looks great.  Keep doing what you're doing."

Dr. ShouldBe; Developmental Specialist.  Armed with microscope in one hand and Normal Child in the other.

I knew the drill, and before she could tell me what to do, would grab Owen and assume the position under that microscope.

She'd go down her little list, using Normal Child as measuring stick, pointing out what Owen SHOULD be doing, but COULD NOT.

Five months old;  He should have better head control.  And his muscle tone?  Poor.

Eight months; Still not sitting up on his own?  That is a problem.

Year old;  Not crawling yet? That could mean trouble for his hips.

Eighteen months; He should be able to hold a crayon.  He can't stack these blocks yet?  How many words does he have?  Oh.  He's not walking?  Hmmmmmmmmm....

Two years old;  Still not walking?  Not eating?  Not talking?  Not coloring?

He should be able to hold a spoon.  Feed himself.  Sort shapes. Drink from a sippy cut.  Run. Jump. Hop. Skip. Speak.

My ass.  He should be dead.  I wanted to remind her.

How dare she?  Compare him to a Normal Child.  Had she not seen his chart?  Did she never realize that she was in the presence of a medical fucking miracle?

How was pointing out all the things he couldn't do going to help us?  I was aware. Of everything.  And not concerned.

That developmental milestone timeline went down with the train the minute he was born.    It was not something that was ever going to apply to Owen.

And I never cared.

So. When Owen was five years old, I made his clinic appointment and kindly asked to NOT see Dr. ShouldBe.  That felt fantastic.

Uncle Rusty understood.  He'd never compared Owen to Normal Child either.  Normal children don't interest him.

What mattered, what matters, is that this baby;

Runs and jumps and sings and dances (in princess dresses) and reads and writes and eats his veggies and is fluent in TWO languages.

It doesn't matter that it took eight years to get here.

And Dr. Shouldbe may agree.

That baby up there? 

Probably shouldn't be this kid today.

Happy Birthday Buddy.


  1. Happy Birthday Owen!!!!
    Hope your day is a BLAST!!!

  2. Happy Birthday Owen!

    And BRAVO Mama for NOT seeing Dr. Shouldbe. Too often we don't advocate for ourselves and our children and just say, "Yes doctor, whatever you say." (or maybe that's just me :-)).

    Oh, and one of my favorite reasons for living in this part of the country is being close to Children's Hospital. I hope I never need them, but I'm SO glad they're here!

  3. Awesome post!

    Happy Birthday Owen!

  4. Happy Birthday Owen!! "Should be" milestones are bullshit. What a beautiful miracle he is.

  5. I know what that feels like - I have one of my own. And he's the best thing that has ever happened to me.

    Happy Birthday, big guy.

  6. You know what?

    I want to send this post to DR ShouldBe cuz she SHOULDBE reading it.

    Happy Birthday, dude.

    You rock all our worlds.

    This was a wonderful post, Tulpen.

    HOW DARE SHE? is right.


    Good for you in refusing to allow that doctor to affect you.


    you know what to do better than anyone else. SO happy Owen and Bea have you as a mom

    that is all

  8. Happy Birthday to the coolest kid I've ever read about !

    He gets his strength, humor and general bad assness from his rock star mom, ya know.

  9. Happy Birthday! Another amazing birthday post.

  10. Happy Birthday, Owen! Enjoy the day!
    I've never commented before (but longtime reader) but I was moved to tears from this post. I think you are an amazing mother. Owen (and Bea) are extremely lucky to have you. As Uncle Rusty said, "Keep doing what you are doing."

  11. Go tell Dr. ShouldBe that the boy who shouldn't be is happy and healthy and celebrating the big 8 and you don't need her shit degree to tell you that is awesome!

  12. I work all day with computer stuff. I can take a printout of what an application does and be able to say "it should be doing this." I think too many doctors do the same - look at x, compare it to y, see differences, and say "no no no, it should be doing this," and completely forget that you're not dealing with the outputs of computer code or a machine, but of a fucking human.

    Any developing child should be doing whatever the fuck the developing child is doing! Nevermind a motherfucking marvel of modern science. Owen is such an absolute sweetheart - I truly applaud you for 1) not caring what Dr. ShouldBe was saying, 2) completely cutting Dr. ShouldBe out of the equation

  13. Happy Birthday to Owen!

    And I totally cried when I read this, in my office. What an amazing little story and such an amazing little boy (princess dresses and all =)).

    Keep doing what you're doing! I really think that some doctors just don't THINK about what they are saying and how it will effect the parent. Definitely keep Dr. ShouldBe out of your life.

  14. Can't think of anything pithy to say, but I loved this post, and love your blog. Keep it up.

  15. Happy birthday to one of the coolest kids around!

  16. Happy Birthday Owen! I will always remember it...the day after my own.

    Of course, he has acheived it all in his 8 years...he's an Aries. A lover and a fighter rolled into one. He fought his way through the rough stuff and won't be slowed by much for all his days.

    Hope you are celebrating your own major rolse on this wonderful day. It takes strength and hope above all to have weathered those early days...and you all did it.

    Congratulations on raising an amazing little dude who makes apparent what all the 'normal kids' could likely never accomplish.

  17. Happy Birthday Owen! I will always remember it...the day after my own.

    Of course, he has acheived it all in his 8 years...he's an Aries. A lover and a fighter rolled into one. He fought his way through the rough stuff and won't be slowed by much for all his days.

    Hope you are celebrating your own major rolse on this wonderful day. It takes strength and hope above all to have weathered those early days...and you all did it.

    Congratulations on raising an amazing little dude who makes apparent what all the 'normal kids' could likely never accomplish.

  18. Dr. ShouldBe, should be thrown off a cliff. Owen is a beautiful, beautiful little boy! Fuck all the milestones.

  19. Rock. On.
    Happy birthday, Owen.
    That is all.

  20. Happy Birthday to Owen AND you! That post makes me so happy I could cry, but that would be a wussy thing to do. For every krappe out there, it's better to remember that there really are miracles everywhere, you just have to appreciate them when you see them. Congrats on the first 8 of many years.

  21. Owen is one amazing kid!

    I am so glad he never was what should be and is just what he is...


    Happy Birthday.

  22. Happy Birthday G! LOVE him and will NEVER forget when I found y'all on line-- his curls melted me, his story inspired me and gave us hope. Happy, happy day!

  23. Every post I read of yours amazes me. Truly amazes me. So glad you've written off Dr. Shouldbe.

  24. Happy Birthday, Owen! Each and every one a celebration, for sure...

    And I totally agree with Alexandra...Dr. Shouldbe needs to see things like this to remind her that sometimes the "shoulds" may need to be replaced with the "cans".

    I love, love the picture of him! Adorable, and congratulations on this milestone.

  25. happy birthday to your miracle kid! i hope he LIVES IT UP! pretty much always and forever. his life should be smooth sailing from now on! it really should be, as that would only be fair! :)

  26. Happy Birthday to an amazing kid!!! I can't imagine going through what you went through at the beginning, how hard that must have been. I also can't imagine how proud you must be now!! You must be fit to burst!! He's seriously amazing and has the most gorgeous smile! Doctor ShouldBe sounds like an ass. Or the carrot stuck up it. Maybe both, it's hard to say. But I like the other doctors, they sound cool. Especially Uncle Rusty.

  27. Happy Birthday Owen! We love you too!!! Hope you are having a supercalifragilistiky day! And even tho I don't "know" you, I'm SO happy you are here!


  29. Happy birthday, Owen!!!!
    Eight is great :)

    Oh, and Dr. Shouldbe?? fucking awesome!!

  30. Dr. ShouldBe wasn't worthy of the Miracle Boy.
    Give him a big smoochie from us. xoxo

  31. Awwwww........ Happy bday little miracle dude! And fantastic mom!

  32. Happy Birthday to you both. :)

    Sadly, Dr. Shouldbe has lots and lots of friends...I may have met a few. Glad you eliminated one of them from your life. That's something to celebrate, too.

  33. Happy Birthday amazing little man!

  34. Dr. Should Be should be renamed Dr. Should Bite Me.
    Happy birthday, Owen!

  35. Happy Birthday, little dud(ett)e!

    Dr. Shouldbe can shove it up her arse.

  36. Happy birthday to both of you!

    (And hurray to you for asking not to see that doctor.)

  37. Oh, wow! Happy, happy birthday to you, Owen. What an amazing child you have grown to be.

    Mom, you are justifiably proud of this wee man.

    Screw Dr. Shouldbe. Owen IS. That's what is important.

  38. Happy birthday, Owen!
    You are one amazing kid!

  39. Awesome post. Happy Birthday Owen!

  40. You really, really, have to knock this crap off. I sit here, thinking this is a run down of docs you've seen and end up with tears running my cheeks. Either you rock or I suck. Either way, Happy Birthday Owen!! Have a super awesome day and make your mom teach you to say a 'special word.' I think you've earned it.

  41. Happy Birthday, Owen. Hope it was a blast!

    I'd kind of like to see Dr. ShouldBe's face if she were to meet him now, actually.

  42. Making me cry again. Cripes.

    Happy birthday to Owen! I hope he has the best day...because he certainly has the best mom.

  43. Goosebumps, for all that should and should not be.

    Happy Birthday Owen!

  44. Awesome post. I sometimes forget when reading your everyday posts that this awesome kid is the the medical miracle I've read about before. Milestones be damned. Happy Birthday to him!

  45. I have no words other than I think this might be


    sorry for yelling


    happy birth day

  46. I am so late to the party, but I hope Owen had a fantastic party with lots of awesomely annoying noises for all the hearing folk in his world! He deserves it!

    xox to all of you!

  47. Happy birthday to your guy!!

    And DrShouldBe needs to meet Mommysgoingtoshoveabootupyourarse

    This post was outstanding. Truly.

  48. Happy Birthday to the birthday boy! So much to be celebrated!!
    Great photo of him too!!

  49. Happy Birthday to you
    Happy Birthday to you
    Happy Birthday Dear Owen
    And may you have many more awesome birthdays!

    Owen is so adorable! I am so glad he made it and is doing so well now! You are an awesome mommy!

  50. My heart swells with this post. It really does. Charlie keeps moving at this own pace and I am learning to move with it--however hard that can be on some days.

    Also, it disturbs me just a smidge how easily I looked at that hospital picture, past all the tubes and things and though, "he looks just the same."

    Thought of you the other day as they checked each of the baby's diaphragms. Both looked intact, which I was happy about.

  51. Happy birthday to Owen and all of you. Miracles do happen.

  52. Aw, happy birthday Plus a few days, Owen.

    What a kick ass post for him, Tulpen. Kick Ass!

  53. Screw Dr. ShouldBe - Happy Birthday (hehemuch belated) Owen!!!


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