My second son was born a year and a half ago with hemifacial microsomia. That means half of his face is deformed. I’m not linking to a description of the birth defect, even though I know you will Google it. I’m not linking because the pictures are always the worst cases. He does not look like the pictures.

Still, I knew he was deformed the minute he came out. The nurse handed him to me, and his face looked uneven. I tried to tell myself that maybe it was because babies’ heads are scrunched right after vaginal birth.

His Apgar score was fine, but after a few hours, when my husband left the hospital to go home to sleep, I went nuts. Summoning every available professional — there were very few that late at night — to tell me a diagnosis.

In the morning, they did emergency tests on his hearing, because his ear was deformed, and on his breathing, because the inside of his mouth was deformed. Then someone came to do a kidney test because the kidney and ears develop at the same time during the pregnancy and when one is deformed the other often is, too.

The baby did not pass his hearing test and one kidney did not look right. The doctor told me that the kidney problem is common and he just won’t be able to play contact sports.

I must have looked really bad because social workers started streaming in. I don’t remember what I said, but my brother remembers my first phone call to him: I am crying so hard it takes five minutes for him to hear that the baby is deformed. Then, when I calm myself down enough, I tell my brother that my husband will die when he hears this so I have to hide it from him forever.

This is when my brother says, “I’m coming there.”

I say, “No. I don’t want you to see the baby.”

The world can publish ten thousand books about how parents love any child they get. And it’s true. But it’s also true that there’s a moment, a short moment, when you think you might die from the news.

Right after the phone call to my brother, my husband came back, and I said, “The baby is deformed.”

He said, “Are you kidding? You think I can’t see that? I know.”

We took the baby home two days later. We diagnosed him by looking at pictures on the Internet. We were absolutely stunned to see a whole population of children who had the same weird deformity.

I brought him to New York University’s Institute for Reconstructive Plastic Surgery. Hemifacial microsomia is very complicated because it can affect eyes, ears, nose, throat, heart and nervous system, all at once. Many specialists work together to come up with a plan for surgery. At my son’s doctor’s appointment, I presented him at the front of a room, with a social worker next to me, while fifteen doctors asked questions and examined him.

Here’s what happened: My son’s surgery was performed by one of the best teams in the world for hemifacial microsomia. All the doctors were incredibly compassionate. The support team of social workers, speech pathologists, and administrators always knew what my son and my family needed before we did, and they figured out how to get it. My son has a scar, and his face is a little uneven, but many people don’t even notice at first glance.

I told myself that I should write thank you notes. The team at NYU changed my son’s life, and helped my family at a time when we really, really needed it. That was six months ago. It’s been on my to-do list for six months. It moves up and down. A few times, when I’ve been really industrious, writing thank you notes has been at the very top, the only thing on the list, and I still didn’t do it.

Last week I admitted to myself that my son will probably need more surgery once his jaw grows to full size. And I thought, Oh my gosh, I had better write those thank you notes or we won’t get into NYU for the next round of surgery.

So tonight, I finally wrote them. There were a lot. Each note made me cry. I thought about how much people did for us. How kind they were. How fragile I was. How tiny my son was. Everything. Every sentence made me cry.

And I learned a bit about procrastination. I had been so angry at myself for waiting so long to write these thank you notes. But I do not procrastinate because I am lazy or unorganized. I am not those things. I procrastinated because I could not bring myself to think about the operation again. I was not emotionally capable of writing the notes until tonight. Sometimes procrastination is the best tool we have for taking care of ourselves.

66 replies
  1. Anita
    Anita says:

    Thank you for sharing a piece of yourself, this was very touching. It sounds like you are handling your son’s physical issues with compassion, love, and intelligence, and applaud you for it.

    Best wishes to you in the new year.

  2. Richie
    Richie says:

    I can only imagine the anguish you must have suffered, and I admire your strength and courage.

    Thankfully you were in a position to have the operation carried out.

    I must confess that I’m not sure what you meant when you said that if you didn’t write the thank-you notes your son wouldn’t get into the next round of surgery. Was that the way you felt?

    Given the many parents who will be facing tough circumstances, let’s hope the New Year is a better place for everyone.

  3. Recruiting Animal
    Recruiting Animal says:

    That was a painful story. It made me glad we live in the 20th, I mean 21st century. I’m happy that your son was able to be treated. (PS: It sounds like you’ve got a good brother and husband).

  4. Benjamin Strong
    Benjamin Strong says:

    Penelope,

    Our children have an amazing ability to remind us of what is important. The Friday before Christmas we took both of our boys to see Santa. Our oldest son (age 3) has Down syndrome. He also suffers from some hearing complications and has used sign language since about 9 months old. We didn't go see the mall Santa opting to see one at the Police Athletic League closer to the house. We really didn't have high expectations other than just getting the kids to sit on Santa's lap.

    When our boys saw Santa our youngest said "Santa!" and our oldest used the sign for Santa. They Santa gave them both a small stuffed animal. I told our oldest son to say thank you and he signed it. Santa then immediately started signing, in full American Sign Language, asking him what he wanted for Christmas. My wife and I were stunned. Here we were at a PAL center and the guys playing Santa were all old police officers. Well this one new sign language. Our son answered him, as only a little boy that believes can, asking for a dog! My wife and I started to cry.

    What's the point of this? The point is I owe the PAL center a thank you letter. Thank you, Penelope, for reminding me that I should sit down and write that letter today.

    Wishing you, and your family, a healthy and prosperous New Year!

    * * * * * * * *

    Benjamin,
    Thank you for telling this story: Sweet and eye-opening.

    Penelope

  5. Chris Yeh
    Chris Yeh says:

    What an incredibly moving and meaningful story. It also goes to show the power of gratitude. One of the things that happiness researcher Martin Seligman has found, paradoxically enough, is that expressing gratitude to others tends to increase our own happiness.

  6. Jem
    Jem says:

    Thank you for your honesty, courage and generosity in sharing this intimate experience. It really touched me. And, I really needed to hear this perspective on procrastination. It was such a soothing balm for the abrasions inflicted by New Year’s resolutions unaccomplished or put off and those freshly dusted off or created.

    Happy New Year! Health and happiness to you and your family.

    * * * * * *

    Jem,
    Your comment provides such a lovely New Year’s slant to my post. I wish I had thought of it myself :)
    Thank you.Penelope

  7. Penelope Trunk
    Penelope Trunk says:

    Thank you, everyone, for such nice comments. I really appreciate them. A nice start to a new year.

    -Penelope

  8. Jason Alba
    Jason Alba says:

    Penelope, I’m continually amazed at the life-experiences that you have (and always delay for at least a couple of weeks to share with us :)). Your story and Ben’s story are very touching.

    If I may share my story from last year with you – it doesn’t have to do with my kids or medical (it was my job loss). But it was a very trying time when our friends and neighbors reached out to us in ways that my wife and I never knew people could.

    What I have realized by the kindness, support and generosity from others is that I have been a life-scrooge – where I could have given before, I was selfish. Where I should have given, I didn’t think it was important enough (and I was lazy).

    There are many thank you cards that I should have written but I’ve been embarrased, or hoped that I could write them after saying with complete confidence that the storm has passed and we’re completely on our feet again (we are, kind of, but starting a new business is kind of hard to explain and I’ve found many people think that what I’m saying about my new business is just a coverup and I’m anxious to get any job that comes my way (not true :))).

    Your stories have inspired me – I’ll get those thank you cards out!

    Thank you once again for sharing something so personal.

  9. PunditMom
    PunditMom says:

    For some reason, in this era of internet and blogging, we think we know people we come into contact with for a small moment. Your post makes me remember that we all have much more complicated lives going on that just what we let people see on the web. It’s amazing how, somehow, we know when we are capable of certain tasks and they get done in the time that we need to accomplish them, when we are ready. This was a beautiful and startlingly honest post. Thank you so much for sharing the details and the lesson.

    Happy New Year to everyone in your family.

  10. Tamar
    Tamar says:

    Whew. Wow. You did it again: opened up wide and deep, enough for me/us to connect with your pain and mine/ours, and the miracles in your life and in mine/ours. I, too, belatedly recognize (and thank) the angels in my life, humans who act on my behalf whether during terrifying crises or the routines of daily life. To correct my chronic oversight, today I opened a new series on my blog to broadcast news of specific angels and the miracles they bring. This series is one attempt to do what observant Jews call “hakarat ha-tov,” or recognizing/acknowledging what is good.

    Congratulations on your consistent courage to bust through all manner of demons and to reflect, to turn inward, to move forward, and to share your lessons. And happy 2007 to you, virtual friend of several years.

  11. Meaghan
    Meaghan says:

    My daughter has congenital kidney/bladder disease and I am ever-amazed by the band of specialists and experts who do their jobs so well — and so often. And, frankly, it never occured to me to do thank you cards at all. I’m deeply grateful for their steady guidance and skill (daily) but never considered putting pen to paper to acknowledge it. Which is true in other instances as well. Thank you for a post that was both very personal — and illuminating.

  12. Peggy
    Peggy says:

    Penelope –

    Thanks for sharing such raw moment of honesty. My son almost died at birth right in front of our eyes due to a tragic medical mistake. A labor and delivery nurse hesitated for a moment, then violated protocal and risked her job by calling for back-up when the doctor attending the delivery had not requested it. Her courage, and the neo-natal specialist who raced in, saved my son’s life.

    I have never forgotten their names and I have often thought that I should write them thank you notes. It was 7 years ago, and I still haven’t done it. After reading your posting, I know why. I can barely stand to think about that awful moment when my newborn son was laying lifeless in my arms. I am so grateful for the people who cared for him – I pray that God blesses them immensely.

    Happy New Year
    Peggy

  13. Rupesh
    Rupesh says:

    Well said and very touching. Procrastination helps in one way to heal the pains. But most of the time, it spoils the life/friendship/love(we can name it, anything here)

    Thank you for sharing your story.

    Wish you and your family a Happy and Prosperous New Year.

  14. Diana
    Diana says:

    First off, let me congratulate you on your son’s birth and successful surgery! I think that every parent must face the anxiety of wondering whether or not their child will be born healthy or with “defects”. I am so relieved for you that your son was born without more serious problems, and that surgery could help your family. Good luck, and best wishes if future surgeries become necessary!

    * * * * * *

    Diana, thank you for being a shining example of the power of pointing out the positive — in any situation.

    -Penelope

  15. Nicole
    Nicole says:

    Penelope, I have been reading your work for about seven years (discovered you via Business 2.0). I love your writing and wisdom. Our lives seem to be on a similar path — career, marriage, and families… and I grew up in Madison and lived in NYC too — so I always read your columns in my in-box and was so happy to discover this blog just today!

    Thank you for sharing this story. My third daughter spent a week in the NICU in late September. The nurses there were fantastic. Her situation was not so serious, and I had no emotional reason to delay. But I only wrote a thank you note to the NICU last week, when sending out holiday cards. (I am sure they barely even remember our family by now!)

    It is strange how high the barrier can be to simply thanking people who have done significant things to help our families. I am sure the staff at NYU will be touched by your letters.

    All the best to you and your family this year.

  16. Dale Harris
    Dale Harris says:

    Penny,
    Thank you for sharing more of yourself than we deserve to partake. But then, it is always in your more personal work that I learn the most about myself.
    My son (my last, he has a twin sister) has issues developmentally, yet I have ignored them, blown them off as inconsequential to my wife, and as just a lag in development compared to his really quick witted and spunky sister.
    In contrast to me, my wife has been taking steps to have these issues accurately diagnosed and addressed. With my full support, but at the same time with me saying that I think all he needs is for us to work with him more at home.
    I guess, I have been sticking my head into the sand hiding from a problem that I cannot fix myself, and fearing that my baby boy is broken beyond repair. I am scared and while my wife is scared too, she is acting. Thank God for the strength you mothers possess, find, summon up. And thank you for helping us to learn about ourselves in your writing.

    Dale

  17. littlepurplecow
    littlepurplecow says:

    Thank you for sharing what’s in your heart. You are an amazing writer and when you take a leap to open up and publish a post like this… it leaves quite an impact. May God continue to bless you and your family.

    Warm regards,
    Stephanie

  18. Emily
    Emily says:

    Thanks for such a personal and powerful post. I hope everyone in your family is doing well. I understand how you feel, though from different circumstances. I have several thank-you notes that I have put off writing to acknowledge people’s neverending grace after pain events in my own life, and I am just now getting around to writing them.

    Best to you all in this New Year.
    -Emily

  19. Miriam
    Miriam says:

    Penelope,

    Your experiences always seem to have a lot in common with mine, particularly with regards to parenting and work. This past Sunday, Dec. 31, I gave birth to a girl with a heart defect called pulmonary stenosis. She had to undergo an angioplasty less than 24 hours after she was born in order to save her life. The doctors and nurses were amazing, and she pulled through and was released from the hospital on Friday – faster than anyone expected, thank God. She may need to undergo another angioplasty, but we are so thankful that she is alive and well.

    Being a parent isn’t easy, even when everything is “ok.” May you be blessed with the strength to get through the difficulties you face with your son.

    * * * * * * *

    Miriam, Congratulations on the new baby! Thank goodness there is a happy ending to this story. Good luck to you and your daughter.

    Penelope

  20. Yvette
    Yvette says:

    My infant daughter was born too early, in order to save my life. She was in hospital for eight weeks. I was by her side the whole time, except for short (guilty) jaunts home to shower and change. The staff were amazing. After the baby (finally) came home, I bought gift baskets for the nursing staff. I dropped them off personally, because I knew where to go … I’d practically lived there for a month. I never got to thank-you cards, and now I know why. First time anyone ever said a reason I could understand. Makes a lot of sense. Best wishes, and thanks. I enjoy your column for all the professional advice, and the occasional comment that makes “work” make sense.

  21. Microsofty
    Microsofty says:

    I came across your story looking for the ASL,’sign’ for procrastination, and I feel truly thankful that I got to see your story, because I believe in the concepting of ‘paying forward’. If God or our “gods” hear our prayers, than here is my prayer for you…. I pray that you overcome any obstacles that you may have in your sons life, and wish you all the best.

  22. Kitty Hebert
    Kitty Hebert says:

    Hi, I came across your story and it is scary as to how much it relates to mine. My son was born 4 years ago and before he was born we knew he had a kidney issue. Then he was born and my husband prepared me that he had a little ear. I knew it was more because God gave me the six sense when I was still pregnant. I noticed his face right away because I was nursing and you could just tell. He failed his hearing test in his right ear several times. He then became very congested (nasal). I diagnosed him w/ in a week and the doctors weren’t sure what it was. If you can write back. I have a few questions for you.
    Thanks,
    Kitty Hebert

  23. Nuri
    Nuri says:

    super late but i’ve just recently discovered your blog…thank you so much for this. i don’t have any kids or anything like that, i’m just a 24 year old who picked up and moved to new york almost a year ago. but your ending words about procrastination still hold so much weight with me. i’d never quite looked at it that way, or rather, you were able to verbalize what i haven’t, that feeling that feels wrong in the moment but something inside you is still telling you it’s alright. so again, thanks.

  24. SaraH
    SaraH says:

    So true. Incredibly. That’s how I’ve dealt with so many things. And it’s nice to read that someone understands that thing it has been so hard for me to explain to people. Why did it take me a year to finish a final thesis for school? My father died 4 days before the original due date, with no warning whatsoever. And I was able to spend 6 months studying in China half way around the world, but not to finish that stupid paper…because doing that would make all those emotions come up again, and finally close a chapter that had been open since before he died.

    Thanks.

    :)

  25. Plastic Surgeon New York
    Plastic Surgeon New York says:

    For us doctors and surgeons, there is nothing like a patient has to leave a thank you note, so that we will take care of him/her the next time he or she comes. It’s our profession and we get paid for doing our job.

    Lady, I admire the strength and courage you had at the time of your childs birth and the strength you have till today.

    Whenever you need a surgery to be performed on your child as he grows, drop into our suite in NY and we’ll try our best to give the best treatment for your son.

  26. Kristie
    Kristie says:

    My son has Hemifacial Microsomia too, he’s 14 months old right now, and I can relate to you!!! I have been dying to get connected with other families of HFM children, my son goes to the Barrow Craniofacial clinic in Arizona, they are great, but I’m having a hard time getting hooked up with a support group, they don’t return my calls. If you could every e-mail me that would be nice. misssandwich@yahoo.com

    Thanks for sharing,
    Kristie

  27. MPH
    MPH says:

    First of all, I know nobody that has Hemifacial Microsomia, so I can’t really understand what you have been through. But I understand that it has been hard (especially emotional). This story made my almost cry. Very touching. I hope for you and your son that everything will go as planned in the future.

  28. Rob Sellen
    Rob Sellen says:

    Penelope,

    As you know I am deaf, born this way after mum caught rubella while pregnant, (thankfully it’s getting rare nowadays), but you know what, I wouldn’t want to be any other way, I am me… :)

    I have no doubt one day your son will say the same.

    I have an amazing mum who helped me through anything I needed help with, I am lucky to have learnt to talk as normal so I don’t use signing.. I really should learn it to help any other deaf people I meet. ;)

    I think this experience when I was 5 probably made it easier for me to go through normal school and I never once fell behind… http://robsellen.com/2007/08/what-lesson-at-5-years-old.html

    I realised early that we are all unique and none of us are perfect. We may think different…
    http://robsellen.com/2007/08/do-i-think-different.html

    Like your son, we do not know any different, in that sense it seems to be our families suffer more than we do, simply through worry or similar.

    What is great, the fact your son has an amazing mum to guide him through life. THAT is priceless.

    Thanks for sharing this with us, I know you wrote this two years ago, but, as you linked in the recent post I hope you don’t mind me commenting. :)

    Give your son a hug from me. :)

    Thanks.
    Take care,
    Rob

  29. Fred
    Fred says:

    This touched me so much. It was so honest, and the same honesty that I have seen in your writings. Instead of using your space to promote negativity and to tear down others, you share things that move people to look closer at the actions they take that sometimes may seem negative, but could be something much deeper. I don’t agree with all of the things you write, but I do appreciate the sincerity and honesty you write them with, and especially the personal thoughts you share like this one

  30. Treasure Coach Review
    Treasure Coach Review says:

    Thats is a touching and beautiful story. I am so glad that things turned out well with your team of doctors, surgeons and specialists.

    And as for procrastination? Well I think it’s perhaps one of the worst and most infectious states that prevents billions of people from reaching their potential.

    Glad you got it done!

  31. David
    David says:

    Wow – that is so insightful.

    Thank you for sharing and I hope everything works out for your little one.

    Regards,

    David

  32. Tina
    Tina says:

    i’m speechless… it’s very touching.
    i’m glad i discovered your blog. you have some real useful tips here. thanks for sharing.

  33. MLM Training
    MLM Training says:

    It is strange how high the barrier can be to simply thanking people who have done significant things to help our families. I am sure the staff at NYU will be touched by your letters.

  34. Mel
    Mel says:

    Thank you for sharing your difficult journey – and the insight into why we sometimes procrastinate – as a superlative procrastinator myself I won’t try and say that it is always for such a well-founded reason but there are definitely times when I think you are right, as in this example.

  35. The Marketing JD
    The Marketing JD says:

    I appreciate you sharing something so personal. I sometimes too find myself putting things off that I dread doing the most. But, there’s nothing like waking up one day and saying today is the day that it finally gets done.

  36. Joga
    Joga says:

    “this is one of the best reads I’ve had n a while, i will be sure to recommend this to a couple of people, great job” True! Just amazing :)

  37. Marie
    Marie says:

    As a teenager who has grown up with Hemifacial I have to say I hope your son never reads this. You have to understand that growing up with a facial deformity you are hyper aware of other’s reactions to you, and if he ever finds out your initial reaction, no matter how justified it was, he is going to feel inadequate.

    I don’t want to start anything. I can tell that most of your readers are parents so I understand if you feel differently, but as someone who has lived with this condition I had to give my opinion.

  38. Gwen
    Gwen says:

    Wow. It’s very strange to come across this post. I’ve been reading your blog for about a year, I’m not even sure how I got here.

    I have Crouzon syndrome. (I’m not as bad as the pictures either.) I basically grew up in the NYU Institute for Reconstructive Plastic Surgery. Did you have Dr. Grayson? With the bow ties? Nice guy. He was great, but I still hated that place. A lot.

    I remember those appointments with fifteen doctors, with my hair held back from my face with bobby pins, being asked to turn just so, feeling like a specimen, and the picture session after. I was the Crouzon poster child. It sucked. It did not make growing up with Crouzon easier. I wrote a big paragraph here about all the ways it sucked, but my mom doesn’t need to hear that, so you don’t either. You guys know. I just wanted to point out how worthless and broken and desperate those sessions in front of fifteen doctors made me feel, because that was a huge thing for me and that’s the one part I don’t think I ever managed to communicate to my own mother. So maybe ask your kid how he feels about them, if they check in on him growing up like they did with me.

    Anyway, yeah, your son will probably need another surgery when he is in his late teens, but he’ll be okay. You and I were probably sitting in the waiting room for hours with all those orthodox Jewish families at the same time – you with your baby, me having clutching the wrist x-rays that meant I’d stopped growing and had go-ahead for my final surgery. He’ll do the same thing. It will be living hell. I spent the first few days on a ton of morphine, then once I got home I did a lot of vomiting with my jaw wired shut. (And now nothing the human body does disgusts me, ever!) But he’ll really want to get it over with and then he can get on with the rest of his life. So you’ll deal with it too and everything will be okay.

    I should have sent those people thank you cards, but I just couldn’t bring myself to do it. I hated every minute I spent in that place. My mom goes to their benefit dinners and tells them how wonderfully I’m doing and it’s fine.

  39. Carl
    Carl says:

    I’ve always said that, if I were to ever have an abnormal child, in any definition of the word, then I would try talking the mother into having an abortion. I realize how horrible this sounds, but I honestly feel like I would be doing the kid a favor. I love my child-to-be far too much to let them live such a life. I know that “every parent wants the best for their kids” is just as cliched and blatantly worthless as “all parents love their kids”, but at the very least I would want my kids to be able to lead the life they want. To fit in, if they want, or not to fit in. It’s not my choice to make for them, they deserve to make that choice for themselves. And, while this mostly applies to more serious situations (Down Syndrome comes to mind, as an example of incurable fucked up conditions), I still would feel incredibly guilty letting my child live with such a deformity. Even a scar wouldn’t be fair. I know this makes me sound spoiled or perhaps selfish, but I’ve never been either.

    Thank you for showing me that I am normal in feeling that way; that it is a representation of love rather than shame.

  40. Thais
    Thais says:

    My heart goes out to you… My son was born with a cleft lip, which was not diagnosed on any ultrasound I had. I had an emergency c-section and was barely able to keep my eyes open because of the epidural, but I remember my shock when I saw his tiny face and his split lips. At the time we didn’t even know it was just the lips… I didn’t even know much about the condition… Never felt so guilty in my life, like it was my fault that happened and how much he could suffer from having something so different and obvious, right on his face. He had surgery at 4 months and now, at 13 months, people can barely tell when they first see him. But, I know the angst and anxiety and every other feeling that creeps up that we wish it didn’t, but they happen anyway.

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