Tuesday, November 3, 2015

Beneath The Surface

I often read and hear about other parents of a child with Down syndrome, saying they don't even think about Down syndrome anymore. For me, although I don't think about it in the same way I did when Ari was first born, it's definitely something I think of several times a day, at least. 

Thinking about it is one thing, grieving over it is another. I often end the story of Ari with a line about how things were hard, but now it's all great and we couldn't be happier. Most of the time, I actually feel this way. However, I recently realized that I still have grief over his diagnosis; it just hides there in the back of my mind and deep down in my heart, not even obvious to me...until it is. 

I think his being in school full time, around other kids his age (most typically developing), has brought some emotions to the surface for me. I know that comparison is the thief of joy, and yet, it isn't that easy to turn the comparison radar off. I love that he is thriving in school and I am so happy to see all that he is learning, but some days are just hard for me. When he was a baby, his cuteness- his absolute heart-melting adorableness, made it easier for me to look past his delays and differences, and he got a lot more positive attention from strangers. Now, although he's still darling, it is just different. I think people notice him less as cute baby, and more as a child who is different than other children. 

Violet is a typical child, maybe even developing ahead of the curve. I have so enjoyed getting to see the timeline unfold in the typical fashion with her, and yet, even that makes me tear up sometimes. I really do love that Ari has his own timeline and is his own person, and I love how much that has taught, and will continue to teach us. But, I guess Violet's progress gives me a comparison I never had before, since Ari was our first. And it causes me to envision the future in a different way as well. What happens when Violet passes Ari up developmentally? I don't know what that will look like or feel like, and in some ways it will probably be cool, but I know it will likely bring that grief to the surface as well. 

I realize that most parents probably don't understand my sentiment, but I am trying to be as open and honest about my feelings as I can be, without worrying about if it will make me look like a bad parent. I know I am a good parent, and that I love my children more than the world. I also know that I am human and flawed, and just trying to get through each day with more smiles than tears, more laughter than frustration, and more hope than fear for Ari's future. 

As I wrote in an older post, "without the grief, my heart never could have opened up enough to receive the love that my son was bringing into it." Now, the grief just stays hidden, deep beneath the surface, to make sure I continue to keep my heart open to the love and joy and wisdom that my son will continue to impart.

Also, Happy Halloween from the Oz crew!


  1. Beautifully written and exposes your heart in the most endearing way. You are an excellent mama and he has a top-notch daddy as well. With the love he is learning from both of you, Mr. Ari is going to affect the world in mighty ways over the years...just wait...and watch out!

  2. I think any special needs parent understands this sentiment perfectly (or they're in denial). With Lily, and because she has literally no one to compare to, it's less for me about comparing her to what her typical peers are doing, and more about seeing a Parallel Lily go through each moment of her life in a completely different way. And that brings grief with it that just is part of the full experience of loving her and raising her.

    Luckily, in therapy I was able to really explore the truth that having that grief as part of the whole of my love doesn't prevent the joy I feel in who she actually is. There is room for both, and just because we carry in our hearts love for the Child Who Could Have Been, doesn't mean we aren't devoted to, proud of, loyal to, and completely in love with the Child Who Is.

    The emotionally developed and intelligent heart has capacity for all of those feelings. And that's what you are. Just strong enough to feel it all.

    Love to you.