Grieving for the Other Owen


I have been anxiously awaiting/dreading the premiere of HBO’s “Miss You Can Do It” – a documentary about a beauty pageant for special needs girls that was started by Abbey Curran, Miss Iowa 2008, who herself has Cerebral Palsy.  I wasn’t entirely sure what I would be seeing or feeling while I watched this – would I be depressed?  Hopeful? Discouraged?

I was certainly emotional – I cried about four minutes in and had all of my mascara completely gone by the halfway mark.

It was, I was, so much more emotional than I had anticipated.  The whole film was remarkable, but one particular quote struck me, and has implanted itself into my head on something of a loop since the evening that I first heard it… A mother was talking about her daughter who was born with Down Syndrome – a diagnosis that was very much a devastating surprise to them at her birth.  On the film, she repeated a piece of advice that was given to her that day…

It’s okay to grieve the child that you thought you were going to have, because in grieving that, it helps you to celebrate the one that you’ve been given.

Cue sharp intake of breath.

Pause DVR. Rewind. Play back. Stare into space. Rinse. Repeat.

My God, oh my God. I hadn’t even thought of that. Why hadn’t I ever thought of that?

I have grieved over and over again for the bonding time I never had with Owen in the hospital.  I have grieved that he crashed in Scott’s arms the first time he was held and how frightening that must have been for them both. I have grieved being 35 miles away from him on his second night on Earth while he fought for his life.  I have grieved not holding him until he was three days old.   I have grieved not nursing him until he was eleven days old.  I have grieved that I only knew if he was about to stop breathing in those first two weeks by watching numbers on a machine and listening for alarm bells.  I grieved that I was his mother and had not given him the safest environment to grow inside me and still could not protect him now that he wasn’t.

I have grieved for Parker.  For the childhood she could have and should have had – full of play dates and lessons and running around carefree.  For the childhood she ended up with – full of compromises and co-therapy sessions and slowing down so her brother won’t fall.  At four years old, she knows what “different” means. What Special Needs are. I have wondered what it will do for her future. Will she need to take care of him? Will he be a burden?

Will she resent him?

I have grieved for Scott.  For this man that I have loved from just about our first conversation.  A man who takes the weight of the world on his shoulders, then offers to carry your burden as well.  He is the epitome of the “strong silent type”.  I grieve the family life that he was trying to grow.  Now mired in insurance claims, and therapists, and using his vacation days for trips up to Owen’s Neurologist/Ophthalmologist/Genticist/PPT meetings at school.  But he goes to all of them.  Every single one.  I grieve the lifestyle that he has toiled for the past twenty years to build that is now going towards bills and specialists and Special Education Advocates.

I have grieved for myself, for the life I could have had. For the woman I could have been. 

But I have never grieved for the child I was going to have.

Because I have Owen. That is the child I’ve been given.

I cannot say why – in my over-thinking, hyper-sensitive and neurotic mind – it had literally never occurred to me that Owen would have or could have been someone else.  That he would have had a “normal” life.  That at three and a half years old he would now be talking in sentences, and be able to identify even one color consistently, and be able to walk up and down the stairs, and have a real friend.

He has never even had a single play date.

Perhaps, subconsciously, I never let myself go there for fear that I would never climb out of the black hole I was diving into.

I cannot grieve that other child because I don’t know him.  I never met him.  I never loved him.

And I love my boy.  I love him so much that it hurts to consider that there was ever another “Owen” out there that could have been mine.  That could have had the easier road in life.  That could have had a life where he didn’t have to fight for every single thing he ever had.  Every word. Every step. Where everything came naturally. Where it all came without having to sweat or work.  It kills me to think that there was a path for him where one day he just walked, and he started talking, and I wasn’t scared to read what the milestones were supposed to be.

I cannot grieve the child that I thought I was going to have because I never got the chance to imagine him.  It all happened so suddenly.  I was caught up in the whirlwind of his birth, his fight – hoping that he had a future was more important than what it would look like.

I can’t allow myself to fantasize about what his “typical” future could have been like, because I cannot bring myself to think about what his actual future will look like.

What will I need to grieve in the future?  Will he have friends? Will people be cruel to him? Make fun of him? Will he even understand it if someone is mocking him? Will he always be “slow”?  Delayed? Disabled?  Will he have therapy appointments instead of soccer practice?  Will he be independent enough to live on his own?

Will somebody ever love him? Will he get to experience that?

It’s okay to grieve the child that you thought you were going to have, because in grieving that, it helps you to celebrate the one that you’ve been given.

I grieve for my son. My daughter. My husband. Myself.

But that other boy… Well, he was never mine.


  1. says

    Beautiful post. I watched that documentary on HBO and hooo boy, did I cry! I only ever grieve, at this point, for the way that I thought it was going to be, and I don’t even do that much anymore. Nothing about parenthood has been like I thought it would be anyway, ha ha ha boo hoo hoo.

    • says

      Isn’t it amazing how we can bounce back, Joanne? How they can just…bounce – because they don’t know what it could have been. What freedom that brings. I’m petrified of the day that Owen starts asking the “what if?” and “why me?” questions… I’m so glad to hear that you’ve moved past the grieving point. Keep moving forwards. J.

  2. lemead says

    Oh, the beauty and honesty in this piece make me ache. We must all grieve all the ways life isn’t how we pictured it, mustn’t we? Of course those two pictures – how we imagined it, as what it is – are totally different for each of us. I don’t mean to compare. Only to say there’s something powerfully universal in what you share here. Thank you.

    • says

      Honestly, Lindsey, the biggest compliment you could pay me would be to say that other people can connect to my writing – to my story. Isn’t that what it’s about? We all may take different paths from each other – and different paths than we imagined for ourselves, but I truly think that they all have to cross at some point. Either literally or figuratively. Nice to know someone else is out there… J.

      • Amy Taylor says

        Oh, please please please, look into the Anat Baniel Method, based on the work of Dr. Moshe Feldenkrais (Anat worked w/ him & has been concentrating on children for decades). It is so powerful and has helped so many kids w/ disabilities grow up to be the best they can be — and so much better than if they don’t get this gentle, transformative work. Here is the website w/ many ways to check it out: Wishing you all the best of luck!

  3. Shieva says

    Love. As usual. Evocative. Emotional. All I can say is “ugh” and “he’s amazing!!” And “you’ve outdone yourself yet again!” Xxo

    • says

      You will always be my friend, my cheerleader, and the first person to have held both Owen and Parker. You were there, and you are the reason they are here. That, my dear woman, means you will always be an integral part of our family’s story. I couldn’t be any more grateful to have you in it… xoxo. J.

  4. says

    Whew. Cue sharp exhale of breath here. Very powerful words, Jamie, and I feel honored to read them. I cannot imagine what you have been through, but I feel the love and gratitude nonetheless. Amazing.

  5. says

    Your words are so clear and beautiful and accessible and true, and YES, I relate to them even if our stories are different (as all of ours’ are). Thanks for writing this. xox

  6. says

    I think for me, it’s a little different, because I actually did have what I thought was a ‘normal’ baby for the first 6 months of his life. And then everything changed. But it took me years to realize that I had to let it go and to grieve for the baby that I once had, or thought I had. He was never really there. It was always my Curtis. And he was perfect to begin with, anyway.

    • says

      I’m happy that you were able to come to that conclusion and that you took the time to work it out, Kammy. That’s equally important for your life and Curtis’s… It’s true that none of us end up with the life we thought we were going to have – the shift just happens gradually for some and more suddenly for others. Thank you for sharing here… J.

    • says

      I always have mixed feeling when people say that they can relate to a post based on familiar circumstances – on the one hand, I’m thrilled that you were able to connect but on the other hand I know there must be pain there connecting us as well. I hope you can find some peace among the seemingly never ending questions… J.

  7. says

    I found your blog through the Huffington Post. My now 7 month old was diagnosed four months ago with Down syndrome, and much of what you write about really brings me back to those early weeks. But might I share, that while I was very much grieving a child that I imagined and never had, just as you write, the reason I was grieving became very important for me to examine. I grieved because of a society that told me I shouldn’t want the child I got, and so I ached for that “normal” child I thought I’d had. I worry for the future as well, but more about whether the world will be ready to accept my child, differences and all, no matter what he ends up doing or not doing. Beautiful writing. 🙂

    • says

      Wow, Jisun… That is powerful stuff. I know how it feels to get devastating news about a child and it ranks up there with the most difficult things to endure as a mother – as a person. Try to allow yourself to have those dark moments, and then do your best to come back into the light and see your baby as what he/she is – yours. That love should and can eclipse everything else… J.

      • says

        Yes, it was hard. But hard, past tense. Not that things are rainbows and unicorns (when is it ever?) but realizing there is nothing wrong with my child has let me focus more on changing the world’s attitudes on difference and abilities so mothers like both of us can worry a little less about our children’s futures. I want there to be a place for all children, no matter what. 🙂

  8. says

    Jamie- what a beautiful piece. Parker and Scott and Owen are lucky to have you.

    I found you via HerStories (I blog along side Jessica Smock for the Carnival of Evidence-Based Parenting).

    I’m not sure what is local for you (I’m in Westchester County, NY), but get in touch- let’s have a play date! My daughter is 3.5 and my son is 1.

  9. says

    What a great way to look at it. I have a special needs daughter who is 13, and a special needs step-son who is 12. My daughter has never been officially diagnosed, however recently went through chromosomal testing and I just got the call that there are abnormalities. I have to wait a week to get into the doctor to find out just what we are dealing with. :/ But, that said, I could totally relate to this post and appreciate the thought.

    I once knew a lady who had a severely handicap son and she told me when he was born the hospital doctors told her to send him away to a home where he could live out his life (this was 50 years ago). Devastated she and her husband asked their family doctor what they should do and he said “You should take your baby home and raise him just like your other kids”. They did just that and to this day he works as a crossing guard at the school, is active in the Lion’s Club, and is able to drive a golf cart around town for his transportation.

    • says

      I am so sorry to hear about your wait for the results of your daughter’s testing, K. That week wait can seem like eons – I’ve been there. I hope that you get some answers that will be able to help her. Thank you as well for sharing the story of the woman you know and her son. It is always uplifting to hear about how full the lives of special needs people can be. I’m sure he’s the best damn crossing guard that town has ever seen! I hope to hear more about your story and your daughter’s… J.

  10. Melissa says

    Thank you for sharing Owen’s life. I know that your blog is inspiring many people to appreciate and love a little more. His photos are beautiful and in his eyes you can see that he is a Smart, Strong, Gentle soul who is deeply loved! It is evident you are doing a good job mama!

  11. astrid says

    Dear Jamie. Thank you for your honest thoughts about having a child with special need. I live in Denmark, so your words go far 🙂 I too have a son. A beautiful and very unique son. Silas is born with a missing part of chromosome 15. He is the only one in the world (known) with that specific chromosome “error”. I have been grieving for the son I never got – but only at first I think. I quickly could no longer see that you write, I never had him. I grieve the dream though. I grieve what I thought I was going to have.. and I grieve for my daughter, my husband, my son Silas and his/our future – so I understand! In many ways were are in the same boat! I love my son more than words can say and I would never want to switch him out for a normal boy. But of course I wish he was different..for all of ours sake. Sorrow is a part of me now and in the beginning it made me angry. I had not asked for this – I had not asked for this feeling. Sorrow has become my companion. An unwanted one. But I’ve had to shake hands with him, accepted the fact that he was here, a part of me and he now living in my heart. Accepting that has helped me – it means that now sorrow lives in my heart but only in part of it – it hasn’t taken away joy, thankfuldness, love, hope and excitement. I actually think sorrow is beginning to teach me a thing or two. My wonderful son at almost 3 challenges us daily and makes us smile daily. His birth has brought us many tears, worry and countless exhausting doctor meetings..but oh what joy he has also brought..and love, beauty, wisdom, compassion. Silas teaches us to live TODAY! We do not know what tomorrow will bring – and in his case we REALLY don’t! No one can tell os how far he will reach. I’ve read a wonderful and heartbreaking book written by a swedish pastor who has two handicapped sons. I don’t know if it’s translated, but if it is read it – so much wisdom in that book (“Naar loevet falder” by Tomas Sjödin) In the book there is a poem. Maybe you know it but I want to share it with you anyway.


    A meeting was held quite far from Earth!
    It’s time again for another birth.
    Said the Angels to the LORD above,
    This Special Child will need much love.

    His progress may be very slow,
    Accomplishments he may not show.
    And he’ll require extra care
    From the folks he meets down there.

    He may not run or laugh or play,
    His thoughts may seem quite far away,
    In many ways he won’t adapt,
    And he’ll be known as handicapped.

    So let’s be careful where he’s sent,
    We want his life to be content.
    Please LORD, find the parents who
    Will do a special job for you.

    They will not realize right away
    The leading role they’re asked to play,
    But with this child sent from above
    Comes stronger faith and richer love.

    And soon they’ll know the privilege given
    In caring for their gift from Heaven.
    Their precious charge, so meek and mild,

    I hold this poem very dear. May God bless you and your family in abundance

    • says

      Wow, Astrid – What an incredibly powerful story (and poem) you have shared here. I cannot tell you how much it meant so me when people post their own stories – how wonderful it is to read and to know that there are others out there… Please keep sharing and reading! J.

  12. astrid says

    I didn’t know your blog until a friend send me a link to your article “grieving for the other owen”. The last days I have been reading more of what you write – what a wonderful blog! Thank you! Owen is beautiful!

  13. says

    I just recently discovered the world of blogging and I just found your amazing blog. This post made me especially emotional. You are a beautiful writer and I am in awe. We were in shock when my son was born with a rare skin condition and although I went through a heavy grieving period after, it wasn’t for some other son I “wished I had, had.” My son was always, my son and deeply loved. I did grieve like you described, for how our lives were going to change and the difficulties he would face having a disfiguring skin condition and visual difference. Although my son is going to be three in a few days and now I look back and honestly wonder how I could have grieved anything. He is so amazing that even though we will face difficult times it is all worth it because I get him to be part of my life.

    • says

      What an incredible attitude, Bridget! I am so happy that despite the challenges your son faces (and along with that, the rest of your family), you will carry this positive outlook with you. It will take all of you so much further than you can imagine… Thank you for sharing – I hope you’ll keep reading Owen’s story! J.

  14. says

    Congratulations on being one of the “Voices of the year”. I hope you don’t mind if I follow your blog, I love to read in the morning. A cup of coffee and a good story goes hand in hand 🙂

  15. says

    I saw this featured on Freshly Pressed and it is a beautiful and touching post. It brought me to tears for all the grieving we all go through, especially as parents. I will be following your blog!

  16. says

    So beautifully written, with a rawness of truth and love that can be felt, held and experienced with a brilliant reality. I can completely relate – our son almost died after birth. We held him… rocking him, kissing him, as we waited for him to die. Luckily for us he lived for twenty-three years. (Diagnosed with severe Cerebral Palsy)
    Our life with him was a mixture of many intense emotions as we navigated our way through our new world, full of everything we never wanted to know and then some. I felt like you – some days extraordinarily lucky and some days horribly unlucky. And let’s throw very frustrated in for an added bonus! 🙂
    But through it all, HE was what and who we loved. Period.
    I’m in the process of writing a book about his life and the people he touched along the way.
    Thank you for sharing, so eloquently, your story and your love. Be well. ~Karen~

    • says

      Thank you so much for sharing your story here, Karen. I am so sorry for your loss – surely his story will live on through your book. What a gift… Take care, J.

  17. says

    This moves me so much; thank you for sharing it. I have worked with and love so many young friends with special needs. In the early days, I would do the What If…what if she COULD talk, what would he be like if he COULD tell me his favorite game? What if she COULD walk independently, if he COULD play catch…

    Now, the what ifs don’t occur to me. “My” kids are who they are, and what used to be “special” is all the time more normal. I don’t know what the future holds for any of them — for any of us — but I’m so thankful we’re in the present together, sincerely.

    And I’m thankful for your honesty and sharing.

    • says

      Thank you, aunnielauren. I don’t judge people who DO consider the “other version” of their child at all – it’s just not something I did, personally. I’m not even sure people can make the conscious choice to do one or the other. “Your” kids, are certainly lucky to have you… J.

  18. says

    My special needs daughter is now 23, but your post brought it all those feelings flooding back to me. With much distance between those early years and the here and now, the grief I experienced and the fears for her future are have been replaced with gratefulness at the sweet young woman she is, at her ability to make all of us rethink ‘normal’ (and why that might not be so great anyway) and love for the wonderful people in our lives who we would never have encountered if it were not for her challenges. There are still moments when I might become anxious for a time when I will no longer be here, but by and large, we have learned so much from and been provided with so much by having this child born into our family.

    It sounds like Owen has a great mom and dad. Parker will adore him, while at moments she will resent how much she does. A really great book that I read when I was feeling that my boys would grow to resent the time and attention I was forced to give to their sister and also feeling great guilt that I just could not give the two of them the time they deserved was,
    Being The Other One by Kate Strohm

    And you are correct, you really cannot grieve a child who never existed, yet it is normal to grieve for those experiences you had dreamed of sharing with that child you carried. And it is okay. Below is a poem I found which gave me much comfort. I hope it does the same for you. Namaste.

    Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved

    I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

    When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

    “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

    But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

    The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

    And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

    But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

    • says

      Thank you so much for sharing your story and all of these resources, Lisa! I am familiar with “Welcome To Holland” and it certainly struck a chord with me when Owen was first born. I will be sure to check out “Being the Other One”. Aside from being a writer, I am also a voracious reader and researcher – this seems so perfect for addressing all of the concerns we are having about Parker right now. Again, thank you. Sincerely… J.

  19. says

    My stepdad’s son suffers from severe autism and downs syndrome and is unable to speak – he just wanders around in his own world. Because he is the same age as me (give or take a couple of months) at times I’ve been able to see my stepdad’s melancholy; at times like high school and university graduation and bringing home girlfriends. Times that, had things been different, he could have shared with his own son. It’s a sad thing to dwell on.
    Anyway, didn’t mean to bring you down. This was a well written, heartfelt post, so congratulations on the FP and good luck bringing up your little man!

    • says

      Thank you, Greg. Your comment didn’t bring me down at all – I genuinely appreciate the strength it takes and the importance of sharing your story. Truly. I’m happy you did… J.

  20. says

    Oh what a beautiful post. Thank you for sharing.
    I work with an organization supporting kids with congenital heart defects, and know for many of our amazing parents that the discovery of their child’s CHD and then their journey from there is sometimes the hardest yet most fulfilling experience they could ever imagine.
    We talk about it as ‘coming to Holland’.
    When you are pregnant, it’s like you’re preparing for a trip to, say, Italy. You read the guidebooks, pack the suitcase with coordinated outfits, plan the activities and dream of this wonderful trip.
    Then you head off on this exciting adventure….and get off the plane and find yourself in Holland.
    You hadn’t expected to land in Holland. You know nothing about Holland. No idea about language, or culture, or even where to start. It’s not that Holland isn’t a perfectly lovely, amazing and unique place to be – it’s just that you’d planned for Italy. Most friends and family have been to Italy and expect you to have the same experience. You’d packed for Italy, even practiced the language a bit. Not much use in Holland.
    It’s a whole new world, and it’s totally understandable to grieve for the ‘trip’ you never got to experience, if that makes sense. But, as you’ve shared so beautifully, this new place, this unexpected ‘trip’ to a unknown destination, is absolutely breathtaking in ways you’d never experience if your journey hadn’t brought you to ‘Holland’

    Hope this makes some sense, I’m finding it hard to find the right words for this, but I just wanted to say thank you, and I understand.

    • says

      Thank you, Glitter. Yes, I’m familiar with that poem and it has been very helpful to me as I’ve gone through the process of getting used to our “new normal”… Thank you for sharing its message here… j.

  21. bluerosegirl08 says

    I am 29 years old and was born with Cerebral Palsy. My younger sister is 26. Several years ago I apologized to her for not being able to fill the typical big sister role. She drove me when she got her license not the other way around. Strangers have almost always assumed she is the older of us.. I apologized and she told me stop. She told me that she wouldn’t be the same person if I’d been normal, less kind,less flexible..Your daughter’s childhood will be different certainly but you might be surprised at the person she grows into because of it.

    • says

      Wow, bluerosgirl08. I am so, so touched by your story and the fact that you chose to share it here. I cannot tell you how much that means to me… How lucky you are to have your sister in your life, and how lucky she is to have you. Your story gives me hope where there was fear – I am so incredibly grateful for this – for this gift you have given to me. Thank you so, so much. xoxo, J.

  22. says

    My husband is the “other” child. His brother has CP and has had many physical issues his whole life, but with family and friends he has overcome what others automatically thought of as limitations. He has a wife and healthy 10month old son of his own. Your Owen will find friends and your daughter will be supportive and always be there! Thank you for sharing this wonderful and powerful piece. It brought tears to my eyes, but with a Mom like you he will be fine!!

    • says

      Thank you so much for sharing your husband’s story – and his brother’s too. It means so much to me to hear all of those positive stories about the fulfilling lives people lead after rough childhoods… It truly seems so much… J.

  23. says

    Its a mothers job to do all she can for her children she goes out of her way she is the back bone of the family she keeps everything together she needs her husbands support yes but she holds it all on her shoulders, You are an amazing example of this you were given the gift to write so that you can vent but also help others and I feel that with this blog you do just that. I think if most mothers were like you what could really be wrong with the world and you are blessed 🙂

  24. says

    Extremely beautiful words. As you grieve for your son, I am happy for your son that he has such a caring mother and family. I was the sister to my brother who had several mental health issues. Unfortunately he was taken from us before I truly realised just how precious life is. I grieve for him every day, but am happy kn the knowledge that he knows I loved him. And thats all we can offer, love and affection x

    • says

      Thank you so, so much for sharing your story, lisybisy. I am so sorry for the loss of your brother, but am happy that you have found some peace among your grief. He knows that you loved him – and sometimes that is the most we can hope to hold onto. J.


  1. […] Because I have him to teach me these lessons that she has not had to learn.  Lessons that are incredibly hard and make me go on soul-search expeditions like this, but allow me to find places within myself that I never knew existed.  Owen has made me tap into depths of myself – of my heart – that took me from that intolerant woman who could barely make it through under an hour merely in the same room with a child like him, to the person who was responsible for him 24 hours a day for the past three and a half years.  I can’t pretend that I have been tolerant for all of it, but I won’t pretend that I ever wished for a different child. […]

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