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Wednesday, December 17, 2014

Quinn is TWO

Today my baby turns two years old. Two. And it's with bittersweet emotion that I type those words; bitter that the days are slipping by too quickly, sweet because there was once a time when we weren't sure we'd be celebrating two years with Quinn. There were so many "what ifs" and "how longs" in those early days before he arrived, and when he got here, I couldn't stop holding him. Now he's too busy to stop and be held. And for that I am thankful.

But there's something that happens when you raise a child with special needs that I try so hard to avoid. In fact, I hardly admit to myself that I'm doing it, but today it feels like it's very much at the forefront of my mind.

I compare.

I compare him to other kids his age. I compare him to his brother. I compare him to other children with Down syndrome. It's not fair, I know. But I do it anyway.

Here's Atticus on his second birthday. He's standing on a chair next to his cupcake. He blew the
candle out all by himself and even sang the words to "Happy Birthday." I remember how he carefully licked the icing from his cupcake and then peeled the liner away to take little bites before he tore from the table toward his pile of presents, impatiently awaiting permission to rip each one open. When he did, he thanked the giver before turning to the next one. These were gifts like toy golf clubs and remote-control cars, art supplies and soccer balls. In other words, typical gifts for a typical two-year-old. And I was blissfully unaware that the celebration would ever be different.

Yesterday I brought cupcakes to Quinn's class to help celebrate his special day. We had so much fun stuffing sugar-laden icing into our mouths and singing "Happy Birthday." But I also can't help but feel a twinge of sadness that Quinn really didn't know it was his birthday. He couldn't walk to the sink to wash the chocolate from his face without someone's help. He couldn't sing the words to the songs. Instead of daintily dissecting his cupcake, he shoved the whole thing, wrapper and all, into his mouth. To be honest, it looked more like a first birthday than a second one. And when we open presents this weekend, the gifts will be toys from the baby aisle that light up and whir and sing songs.



I'm far enough in to this special needs parenting gig to let those differences roll off my back. I can take it. And Quinn is downright awesome. But even the twinge of sadness at his development makes me feel guilty, which makes me feel ungrateful, which makes me feel even more guilty. That damn guilt is stronger than anything, really, and it seems to be a prevalent theme amongst my mom friends walking similar paths. We want our children to be the exception, and when we're disappointed that they're not, we struggle with the accompanying guilt. Or worse, we always feel like we aren't doing enough.

And it's at the moment when I'm reeling that my mom sends me a copy of the Houston Chronicle's article on Ezra Roy, a young man with Down syndrome who just graduated Magna Cum Laude from Texas Southern University with a Bachelor's degree in art. I've read quite a few stories about individuals with Down syndrome attending special programs on college campuses, but this is the first time I've read about someone with Trisomy 21 earning a true bachelor's degree. And I smiled to myself (ok, I also cried a little a lot) because Ezra's parents likely worried about his development and felt guilty when he didn't reach their lofty expectations every time. But maybe that worrying and guilt paid off, because it meant they never stopped encouraging him to achieve greatness. And as a result, Ezra proved that he's not to be underestimated. He's not to be labeled according to his disability, but rather his many abilities. And from what I understand, he is a talented artist and a dedicated student. Ezra has the entire Down syndrome community buzzing in celebration of his success. But more importantly, he has the academic world taking notice of just how much our kids can accomplish.

So, yes, Quinn is behind most two-year-olds. He's not walking or talking yet, but I'm going to spend the rest of his birthday thinking about all the things he CAN do, and the list is quite impressive:

  • Quinn can light up the whole room with his smile.
  • Quinn can bang his chest and grunt when he sees a picture of a gorilla.
  • Quinn can shove an entire cupcake in his mouth in one swift maneuver. But he can also use his pincher grasp to pick up individual cheerios and eat them one-by-one.
  • Quinn can communicate using sign language to let us know when he's hungry, thirsty, tired, or just plain over it.
  • Quinn can crawl on his butt faster than most grown men can run. Trust me; I've seen my husband  try and fail to catch him when he's on his way somewhere dangerous/important/forbidden
  • Quinn can give the best hugs and will pat your back with his little hand when he does. And he can make you melt in that one move.
  • Quinn can tickle his brother to the point of uncontrollable laughter.
  • Quinn can point to his nose, toes, eyes and mouth. He can sneeze on cue.
  • Quinn can say, "dada," "dog," "all done," and "more."
  • Quinn can make me slow down and enjoy the moment.
  • Quinn can build a tower of blocks for the sheer enjoyment of toppling them over.
  • Quinn can stand up on his own and take 4 steps at a time.
  • Quinn can steal the remote and use it to turn the TV on and off repeatedly.
  • Quinn can throw one helluva tantrum.
  • Quinn can entertain himself for hours if he has a tall stack of books.
  • Quinn can make people realize that different is good.
  • Quinn can forgive faster than any child I know.
  • Quinn can make our family happier than I ever thought possible.






15 comments:

  1. Such wonderful words! I`m so touched!

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  2. Quinn (and you) have opened the eyes of many, many people who were oblivious to children with downs syndrome being people too. I started following you after the "Troll" post and love how real you are. Sharing true feelings about your child. I am blessed enough to know a young lady who my sister has cared for since she was 8. She just turned 21 and will serve with me as a bridesmaid in my sisters wedding. Thank you for always sharing and Happy Birthday Quinn!!

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  3. Megan, nothing in life is a sure thing. Your beautiful sons are your token of love, gifts from God and have unique personalities. THEY ARE BEAUTIFUL in their own right. How wonderful you can love them like you do - how impressive and encouraging to read about your journey. Travel with love, enjoy the sights and experiences. Most of all I want to THANK YOU - for not hogging this love all for yourself - but allowing others to accompany you on your journey. May the birthday celebrations with Quinn be many... and the laughter, tears and cheer be cherries on his cake. Happy 2nd birthday Quinn!!

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  4. The sadness for Quinn's disabilities will always stay in you, and it will 'waken up' anytime, espacially on special occasions.
    Give your self time and space to mourn!
    My Downs son is almost 30 years old now, and he is loved by everyone. A grown up downs 'child' is wonderful!! You can't find anyone with a better quality in life, or more happiness.
    But I do still have my sad moments every now and then.
    My english is a bit rusty, and in my blog it is non-existant - but take a look at the pictures, and listen to the music here: http://nikisgarage.blogspot.dk/search/label/handicap

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  5. Aunt Linda here...as an adult "special needs" child (when I was a kid, they called it "handicapped"), I can tell you this: I think you're on the right track. My parents were told all sorts of things. My mother was stopped on the sidewalk by women who thought she was a bad mother because she did not help me up when I fell. One lady once asked us if we had ever been to Hot Springs Arkansas. She believed the waters would cure me.
    As a college student, a lady offered me money as I left the grocery store around Christmas time. I said, "No thank you, I have a job."

    I rode my bike with training wheels until I was 13. THIRTEEN. I got ridiculed a lot. But the training wheels came off, and away I went. A younger neighbor girl was afraid to learn to ride a bike. I told her, "If I can do it, anyone can do it." I cheered her on, & she learned. Her mom reminds me of this when I see her. At 16, when other kids got their drivers' license, I got a beautiful purple 24" three-speed bike. I rode that bike everywhere, rain or shine--to my first job at a doctors office, then all over my college campus.

    I did get a little car and my drivers' license at age 20. Had a baby at 25, married Uncle Bob at age 38. I was a very late bloomer, and often put the cart before the horse. But I got where I needed to go.

    I fight every day to prevent Cerebral Palsy from stopping me. The less I do, the less I am able to do. Quinn is already doing lots of cool things, and he will do more.

    A college friend once said, "You can't help the way you're born." Neither can Quinn. It was not your fault. God gave you this boy because there is nobody better for him.

    Keep doing what you're doing. You're on the right track.

    Love,
    Aunt Linda

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  6. "Quinn can crawl on his butt faster than most grown men can run." Made me snarf my tea, you did.

    So much love to you, Quinn, Atticus and B-man from the Bickles!

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  7. Happy Birthday Quinn! You are so awesome!

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  8. Happy birthday to Quinn. What a lovely son you have. take good care of him, he is a real gem.

    Kindly regards Finn Thorning

    P.S. i do not know how to comment as, thats why i comment as anonymous, but i saw your posting on Facebook here i Denmark and i liked your comment on Instagram.

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  9. Dear Megan,

    Did you heard about Pablo Pinerra ? The first teacher with Down syndrome in Europe, Spain. Quinn could be like you one day.
    Quinn might be behind kids of his age and there might be 1000 things he can't do but Quinn has something that millions of kids don't have: loving and supporting parents & family
    Quinn the mighty will make his way

    Lots of love and good luck from Germany
    Stephanie

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  10. First of all, Quinn is an absolutely adorable two-year-old! Second, as people have pointed out, there are many people with Down Syndrome who go well beyond what anyone might have predicted for them; you might want to look up "Oliver Hellowell" on Facebook - he's an 18-year-old English fellow who does gorgeous photography and who also happens to have Down Syndrome. (His parents seem like lovely people and might communicate with you.) Some people with Down Syndrome, of course, won't fare so well, and that can be incredibly difficult. We can't romanticize how challenging and sometimes overwhelming it can be to raise a child with a major disability. Given your outlook on this, however, I think Quinn will do well! Blessings on you all from Canada -

    Susan

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  11. I notice that Oliver's Facebook page has a link to a film called "Special Miracle - Down Syndrome", which shows many people around the world and their successes (ballerinas/fighters/ business owners/artists/actors - one even seems to have a PhD, as she is described as Dr!)

    Susan

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  12. I worked with adults with Down Syndrome and I can confidently say they are one of God's gifts. Set the bar high and he will reach it; there is a tenacity gene that must get amplified with DS because everyone seems to have it in Spades! Along with tenacity is the lovingness that they exude from every pore ( I've had many a spine crushing bear hug that prove my point, they love BIG!) It hurt to see some soulless person would dare call that beautiful baby ugly, that word is truly a reflection of them.

    I remember one time helping a client with DS learn to grocery shop and she seemed to keep ending up in front of a woman also trying to grocery shop. Instead of asking nicely she demanded the R....D move out of the way. She found herself sprawled out in that aisle ( I might have checked her like Wayne Gretzky, though I admit nothing) you handled the insult much more gracefully than I might have. Unfortunately, you might deal with a few more. Here's hoping you continue to handle it more gracefully than I ( may or may not ) have.

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  13. Your Child is beautiful!!!!
    Hallo
    Ich habe gerade deinen Brief an diesen Vollidioten gelesen, der dein wundervolles Kind hässlich genannt hat. Ich bin begeistert von deinen Worten, auch wenn ich denke, dass dieser Mensch gar nicht so viel Beachtung verdient hat!
    Dein Kind ist wunderschön und du bist eine mutige und liebevolle Mutter!
    Herzliche und respektvolle Grüße aus Bayern
    Kerstin

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  14. Happy Birhtday Quinn and a long, happy life!

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  15. Dear Megan,

    I stumbled upon your article in the Huffington post after receiving news that my baby would be born in December with Down syndrome. I have relentlessly been searching online to find out if there was anyone else in the world who felt what I feel. And you were it. I immediately sent the link to my husband and begged him to read it. I felt like you so eloquently put into words every emotion and every thought that I have had thus far. I was so delighted to see that you have a blog, for now you have a new follower. I'm hoping that through your posts many more of my questions will be answered and my fears relieved. Judging from this post alone, I feel as tho I am in the right spot. Your son is so adorable. Thank you for giving me hope.

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