The Pain in the Heart

I’ve hesitated to write this, but when I think of other mommas who might be out there thinking the same thing, I feel like I need to share this.

I have a very, very dear friend whose daughter is 2 months older than Rowenna. My friend is endlessly patient, kind, gentle. She constantly seeks to better understand and better support those around her, and for that reason I hope she understands what I’m going to write.

We recently attended her daughter’s second birthday party. Rowenna and her daughter were the only little ones there, so all eyes were on this pair of girls. (as is usually the case when adorable toddlers are around!) There’s something about a milestone that makes you take inventory of your own life, I think, so as we sat there and celebrated her beautiful daughter, my mind reeled at the vast differences between them.

There was a lot of  “Oh, I remember when the birthday girl was that age!” and “Just wait til she’s old enough to walk!” as Rowenna crawled with wild abandon around the party, being her lovable Rowenna self. Now to my friend’s credit, she never jumped in with an “Oh, she has Down syndrome!” in an attempt to explain my child and for that, I am grateful. It took a whole lot of willpower for me not to shout “she’s only 2 months older!” in the middle of this party. I was feeling simultaneously fiercely protective of my girl and crushed at the obvious differences between the two.

And I know people say things like that because it’s what you do, or because they’re trying to make small talk, or because they really just don’t see Down syndrome in my sweet girl. I know these things are said without malice or prejudice, but they still sting, even after almost 2 years.

But the hardest part was my own reaction to seeing my friend’s darling girl in action. I hated sitting there, choking back tears, as her clever girl picked up presents, identified various items, said thank you, and gave hugs. Walked. Talked. Asked questions. Asked for things. Identified needs.

I sat there and choked back tears, flashing forward 2 months to Rowenna’s second birthday. I know Rowenna will achieve all of these things, but her second birthday is going to look so very different than the party I just attended. A reminder how different my girl is right now and of the road ahead.

And perhaps this gets to the heart of one of the things I dislike about Down syndrome – the distance that is sometimes there, a distance when you really crave closeness. The awkward smile of a friend who looks from her child to yours. My own trembling smile. Simultaneously loving my own child and fighting the pain in my heart that some things just don’t come naturally to my child. Wanting to change nothing about Rowenna while wishing she could tell me when something hurts or something is fun. The distance I put between myself and one of my oldest, dearest friends in order to protect my heart.

I want my friend to know that I love her, and love her daughter. I am proud of her as a momma, and proud of her little girl as she grows into an ever more delightful sprite of a girl.

And I sincerely hope that days like these are fewer and fewer for me. I think they will be. And I hope I’m not the only mom feeling this way.


8 responses to this post.

  1. You are not the only one…. What a beautiful post.

    I’m very lucky in all of this be as I have my Mucah. Typically developing, razor smart and yet… He didn’t start talking till after 2. He started walking at 14 mths. I really learned with him that disability or no, all kids are different and progress at their own pace.

    Our kids will take their time with some things, yes, we all know that, but they will be faster at other things and it’s exciting to see those unfold a well.

    I truly admire you for writing your feelings (and so eloquently!).


  2. Posted by thurairasalingam on March 26, 2012 at 11:42 pm

    Ya Bahau’l Abha!


  3. Posted by oeildelagrace on March 26, 2012 at 11:52 pm

    Your words so keenly express my own feelings, fears and fierce love I have for my 15month old son with Down syndrome.


  4. I have written many posts like this after attending the birthday parties of typically-developing children. And a few of those were after the party of the little boy of a very close friend of mine, a little boy that’s only 4 months older than Samantha. I also hoped that my friend would understand what I was writing and why, and, being a true friend, she was more than supportive, appreciated how I felt. It’s hard not to put that teeny little bit of distance between you and your friend as a result, but I’ve found, over time, that’s gotten a little better. I still feel that twinge at birthday parties, but I also see how protective Samantha’s friends are of her, and I’m learning a whole new lesson in that.


  5. I struggle with these moments too. I dropped Claire off at daycare this morning, and a little girl probably 4 months younger than Claire said “see baby”. And while Claire signs baby sister with great enthusiasm, the words just aren’t there yet. And I’m bummed out, but oh so proud of my girl and all she’s accomplished at the same time. I think what you said about Ds putting distance when we crave closeness really sums it up.


  6. You are SO not alone, but you really wrote this beautifully. That paragraph about the distance is so poignant. I am going to see my sister again in a week or so and even though I am so excited to see her and love on my little nephew (only 4 days older than my own sweet girl), I have a sick feeling in my gut for how I’ll feel watching him running and talking, when my own sweetie is barely crawling. Most of the time I feel OK with it, but it does create a distance. For me and for her. Because then she feels bad telling me about her own son’s accomplishments…. It’s a hard thing.


  7. I am right there with you and sending hugs!! I think that it gets harder as they get older and the differences become more apparent. I secretly dread doing certain things with children around the same age because I know those horrible thoughts/feelings will creep into my head. You are not alone! Rowenna is beautiful, by the way! When is her birthday?


  8. Posted by Erin on March 28, 2012 at 1:24 pm

    My nephew is about 3 months older than my daughter, Carrigain, and my closest friend has a son who is 2 months older. Looking back 4.5 years into this journey, I realize that I do well when I don’t even think of them as being the same age. Carrigain is (and always has been) doing great for Carrigain. I try to think in terms of stages rather than ages. Rowenna is in the crawling and adorable stage, and Carrigain is in the funny walk-run, naughty and opinionated stage.

    When we get together with friends and cousins who love Carrigain, I never have to worry about whether she’ll keep up-in many ways she won’t. You know what though, kids who love her and want to include her are brilliant at helping her to be successful.

    Just the other day my nieces (7 and almost 8) and my nephew were playing “monkey in the middle” when Carrigain walked over and asked for a turn. Her voice was quiet, and her words a little unclear, but my 8 year old niece spotted her, stopped the game, and explained that she thought Carrigain wanted to play too. My other niece turned and smiled at Carrigain and said to her other cousins, “Guys let’s play pass all together now instead, OK?” I stopped holding my breath and I swallowed the giant lump in my throat, as they widened the circle just enough for Carrigain and resumed playing. She doesn’t need to keep up, they’ve got this…

    Oh, and on another note. Carrigain’s favorite birthday present (and tasty treat) on her birthday was tissue paper. She crinkled it, ripped it, tasted it… By Christmas of that same year, she was saying, “Present!” and, “Open it!” and “Puzzle!”


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