I’ve recently become acquainted with a new mom whose baby has Down syndrome.  She’s around my age, and like me, she didn’t find out until after her baby was born that he has Ds.  She’s having a tough time.  I struggle to find the words to say to her that might ease her sorrow, trying to reach back in time and touch on the words that might have eased my own sorrow in the weeks and months following Finn’s birth and surprise diagnosis.  I know that there is a part of me now that has often wished I could go back to the me then and say, “It’s going to be okay, it really is.”  But I realize, too, that the me then might have had a hard time believing that; I’m sure people close to me did tell me that everything was going to be okay, and although I probably knew they meant well, how could they possibly understand what I was feeling, how HUGE this whole thing was?  Everyone has words, many of them empty, even if well-intended.

Still, I am often very conscious of and just plain grateful for how far I’ve come between then and now.  I remember so well the grief I experienced when we learned that Finn has Down syndrome.  Down syndrome of all things!  All I knew of Down syndrome was that it was those odd-looking people I saw very occasionally whose eyes looked strange, whose heads often seemed a little too small for their bodies, and they all seemed to dress horribly and have awful, institutional haircuts.  But that was only the half of it!  All kinds of unwelcome information was foisted on me after Finn was born.  Mental retardation!  Sterile!  Loads of medical problems!  Therapy!  Special ed!  And the worst part?  It’s forever.

Although the raw fierceness of my love for my new baby never wavered, I grieved.  I grieved for the baby I had expected who was not to be, and I grieved for the life I had envisioned for him.  I was angry.  It was all so unfair.  There were moments when I felt like I was literally suffocating from the grief I felt.  I would sometimes close my eyes and wish as hard as I could that somehow time could be reversed and I could just go back to being happily pregnant, blissfully ignorant of all this heartache, with only a wonderful sense of anticipation and expectation and hopefulness filling me up.

It’s been almost three years since all those dark feelings flooded me.  I don’t know when things changed – I don’t think it’s a turning point that can be pinpointed.  I just know that time was the elixir.  Over time, the sadness and overwhelming fear dissipated.  Eventually, the heaviness lifted, and life became just life again.

And now . . . well, it’s hard to even find the words to describe how I feel about Finn.  The magnitude of my love for each of my kids often results in a physical ache in the core of me . . . but with Finn, it’s a little more complex.  There is protectiveness.  And gratitude.  And awe.  And so many other things I feel but can’t articulate.  I wouldn’t change him.  I’d change the world, how the world sees him – and I will spend the rest of my life working towards that, one person at a time – but I wouldn’t change him.  He’s different, yes, there’s no denying that.  But he’s not defective.

Michael and I find the humor in things concerning Finn – as with all our kids – (I’m not above telling Finn, “Dude, you’re not helping your cause,” when I find him chewing on his sisters’ shoes).  I give him mohawks and dress him in Jimi Hendrix t-shirts, because there’s no reason he can’t be as cool as anyone else, dammit.

Sometimes I’m still scared.  Sometimes the foreverness of Down syndrome still scares me.  I don’t know what Finn’s future will look like.  Will he ever . . . ?  I don’t know.  I try not to think too far ahead, because guessing at any of my kids’ futures, or even my own, is folly, and I realize that.

Being aware of how far I’ve come, though – having the vantage point of being on the other side of the initial grief – it’s given me this want, to reach out to someone newly sprawled out on this path.  But what I’ve realized is that everyone’s path is different.  There is no universal experience here.  There is a common thread among us parents of children with Down syndrome, but we are as different from each other as our children are.  Everyone deals with this experience in their own way, and there is no magic formula, no magic words, that will suddenly bring acceptance and optimism.  Only time does that, and everybody has their own timeline for healing, just like each of our children has their own timeline for learning and achieving.

I know that my new friend will get there in her own time.  Someday, maybe she will meet a new mom whose baby has Ds, and she’ll say to herself, “Ahhhh, I remember when . . .”  And she’ll tell that new mom, in words or deeds, that it’s all going to be okay.



7 Comments on “Paths”

  1. Grace
    April 6, 2011 at 10:37 pm #

    Love you blog and love this….Finn reminds me of my little man Nolan, fohawk and decked out in tshirt ties…of course he is that cool and deserves all of the fashion that his siblings have and my vain self can afford! 🙂 But, agreed, I am fairly new still 7 months in and delays are beginning to show themselves and questions begin to challenge my strength. And I have a feeling that is life isn’t it, forever…and down syndrome gives you a gaurantee of that, no control, not knowing, but isn’t it funny that all of our life is that, we just live in delusion that it isn’t and DS takes that delusion and says, HA deal with it! So, thanks for writing all of this, I often wonder what I would say to someone in my shoes, it is a tough call, and I know this much, for me personally, nothing me bothers me more than saying it is a blessing, because right now, doesn’t feel like so much of one and unless you walked in my path I find that to be rather annoying….just sayin. 🙂

  2. Jennifer Varanini Sanchez
    April 6, 2011 at 11:47 pm #

    LOVE this post…oh so true.

  3. starrlife
    April 7, 2011 at 2:00 am #

    Great post. Happy to be on the journey with you!

  4. mumofone
    April 8, 2011 at 11:55 am #

    An incredibly poignant and uplifting blog post. Wish I could share this with the world!
    Especially loved this bit:
    “I wouldn’t change him. I’d change the world, how the world sees him – and I will spend the rest of my life working towards that, one person at a time – but I wouldn’t change him. He’s different, yes, there’s no denying that. But he’s not defective.”

  5. Meg
    April 9, 2011 at 2:47 am #

    Hi, I follow your blog and enjoy reading about Finn and the rest of your crew. I never comment but wanted to share one simple statement a mother said to me when I learned of my unborn baby’s extra chromosome. This woman was an acquaintance who turned into a friend. She was the teacher of two of my children. (They were in middle school so it wasn’t like I knew her all that well, but I did know that both my kids thought that she was not only a good teacher but funny too…and this coming from middle schoolers…amazing.) At the time her only son was a baby, she was in her twenties and his diagnosis had been a huge shock. She simply said that he had brought so much joy into their lives. That as upset as I was feeling, it was miniscule compared with the love, laughter and joy he was going to bring. That was it. But I couldn’t help but believe her…completely. And it REALLY made me feel almost fine. My son in 17 months now and we absolutely eat him up, and are mad crazy insanely in love with him. It’s all good.

  6. Penny Putman
    April 9, 2011 at 1:34 pm #

    love this post….expresses so well what most of us have felt! thanks so much!

  7. americanauslander
    April 27, 2011 at 8:59 am #

    I remember the most helpful thing said to us was from our OB. ‘Take the time to mourn the child you expected and have lost. Then you will find the joy in the child that has arrived.’ Thanks for sharing your honest emotions.

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