A Little Big Thing


“. . . realizing your child is not ‘Down syndrome’ and being able to see your child as an amazing person, full of potential, is part of acceptance . . . .  Acceptance of Ds (and the role it plays in all of our lives) as a whole is entirely different . . . and is a life long process. We have all recognized that our children are very awesome. We are also open to the ups and downs of dealing with how Ds impacts our children and our lives and are aware that we will evolve.”

This is something a friend of mine said recently.  Let me just say, first, that I am so fortunate to be acquainted with some other parents traveling their own paths through Down syndrome who are willing to sit down and open their minds and hearts to me, to reflect and discuss with me, and to enable me to sort out my own feelings along the way.

What she said above put into words some nebulous feeling I’ve had, maybe since Finn was an infant, about acceptance.  Through a process that had a distinct beginning (receiving Finn’s diagnosis) but no distinct end, I arrived at a place, gradually, of acceptance.  The shock wore off, the tears dried up, the anger at the unfairness of it all evaporated, the fear was (mostly) replaced by resolve, and finally all that was left was this little boy who I loved with a fierceness that was bigger than the grief.  I’ve never really looked back.  I’ve sworn up and down that I wouldn’t change a thing about Finn – not even the fact that he has Down syndrome.  And it’s true, it’s really true.  Maybe it’s because I just can’t separate Finn from Down syndrome; maybe I just can’t fathom a different Finn, a Finn without Down syndrome.

Which is not to say that all  – or even very many – of my thoughts are consumed by Down syndrome.  I don’t think about it in concrete terms very much, really.  Finn is just Finn, for the most part.

And yet, to deny that he is different, to deny that our family is impacted, to deny that we face challenges and frustrations because of his having Down syndrome, to deny that sometimes these challenges result in a certain sadness, is an exercise in denial and dishonesty.

In the beginning, I mourned the dream-child I thought I was going to have. I don’t mourn that dream anymore, but there’s a constant awareness, sometimes conscious, sometimes subconscious, that I’ve landed in a place I never planned to be.  And while I feel completely capable of and utterly fulfilled by being Finn’s mommy, sometimes I feel ill-equipped to be a mommy to a child with special needs.

What I’ve figured out, and with the help of other wise parents have been able to articulate, is that acceptance is a life-long process. It’s not just something that happens one day, and phew! it’s behind you.   Loving a child with special needs requires continual adjustments in your perspective and expectations – of your child and of the world around him.  From his lack of communication skills and the resultant frustration on his part and ours, to his utter lack of fear and his penchant for bolting, to the knowledge and sadness that he has no idea that Mommy’s growing belly contains a baby sister he will soon have to contend with, to the stomach ache I get when I contemplate his going to school and the fight we will have to face over his placement and fears about how he will be treated . . . these are only a few of the regular visitors in my head.  I don’t dwell on these things; they are fleeting thoughts and feelings that come and go, and come and go, and come and go.

Life has been a continuum of events and circumstances that have shaped the way I feel, perceive, and behave.  I’d like to think that I’ve allowed even the most trying of events and circumstances to enable me to grow and acquire some measure of wisdom and compassion.  Having a child with Down syndrome, while not the biggest thing that’s happened along the way, and not the lowest of low points, is nonetheless forever – always there, sometimes center stage but more often in the background – always shaping me, asking me to be the best I can be so that Finn, and all of my children, can be the best they can be.

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6 Comments on “A Little Big Thing”

  1. Monica
    February 20, 2012 at 7:14 am #

    Beautifully written. It’s like you grabbed the thoughts straight from my heart and mind about John Michael. For me, his Ds is usually in the background, but sometimes, like you say, creeps front and center… especially when he bolts or interacts with strangers. But I still wouldn’t change his Ds, either…

  2. Caryl Becker Phillips
    February 20, 2012 at 2:39 pm #

    WOW! I’m speechless. And that’s saying something.

  3. TUC
    February 20, 2012 at 6:29 pm #

    Thank you Lisa for putting into words what has been on my heart lately.

  4. Cheryl Tierney Kinne
    February 20, 2012 at 7:24 pm #

    Hi Lisa, I haven’t commented before, I just recently discovered your blog. I loved this post, so much of what I feel and how I think about my son Luke (20 months). Thank you, I hope to have some time soon to go back to some of your older posts.

  5. Jenny
    February 20, 2012 at 8:18 pm #

    I love this post Lisa, you beautifully put into words exactly what my heart feels. I shared it on Fb 🙂

  6. Alyson
    February 27, 2012 at 8:21 pm #

    Just beautiful Lisa

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