Saturday, February 9, 2013

DS moments

This morning at basketball Quinn refused to participate after the initial warm up drills, sitting out his turn during the scrimmage game.  First just sitting out, then crumpling into himself, then outright crying.  His aide tried to coax him up.  His coaches tried.  Even a young teammate made a sweet attempt.  But nothing would convince him to move.  I took him from the sidelines, tried a couple of bribes, a trip to the bathroom & a few more bribes (ice-cream!  The Lorax!  the park!) but nothing could convince him to take his place on his team and participate.  Feeling open, exposed, and raw because I am in this on my own today.  William is working nights and is (hopefully) fast asleep right now.  A bit frazzled as well since the babysitter, who was supposed to watch the two younger boys so I could focus on Quinn, was a no-show.

Recognizing defeat, I surrendered and gathered the two little ones and pouting big one to make our exit.  I felt the looks of pity? kindness? curiosity? from the other parents as we made our way to leave.  These are the moments that are the hardest for me.  When the spotlight shines bright on Quinn & our family, revealing every nuance of difference.  All kids have their tantrums, their meltdowns, but in this moment it feels like this bright light shows the place where that extra chromosome dwells.  How our family has to deal with things that others do not.  In our experience so far, people are very kind in these situations.  The irony is that their kindness makes it feel harder in some ways.  That sounds messed up, I know, but what I mean is that it forces me to recognize that the issue is mine.  In some twisted way it is easier to deal with a slight or cruelty because I can rally the forces to face it together.  My reaction to kindness or pity is my own issue to sort out.  I find it strange that my biggest fear about Down syndrome at this moment is being on the receiving end of pity.  The extra behavior issues, increased risk for dementia, need for supervision to continue in ways that typical kids do not… these things, and potential things, feel manageable somehow.  Acceptable worries.  The logical part of me knows that worrying about what other people think should not be anywhere on that list.  This emotional place, however, doesn’t follow logic much.

When Quinn was younger I never minded the extra therapy or doctors appointments, instead finding comfort at having a team of people to turn to as he grew. But standing out in this way is something I still struggle with.  Feeling “different” brings me right back to that feeling of dread in middle school that everyone was in on some joke that I didn’t understand.  Or in new motherhood when it looked like it was all so easy for everyone else, but I struggled with adjusting to my new identity.  (Something I know that is not true, everyone has struggles, but felt profusely in the earliest days with Quinn.) 

The day goes on & I start to wonder why it is so important to me that he play on a team at all.  These moments in parenting always take me by surprise.  The ones where you have to take a breath, focus on the issue, and try to separate what is yours & what is theirs.  Is it important to Quinn to play on a team?  Probably not.  But as his parent isn’t it my job to push him out of his comfort zone a little, to provide the chance to learn something new?  The world won’t always slow down for him, so I feel that I need to give him every opportunity to find his own way around within the fast pace of regular old life.  Having him fully included at school is a big part of this.  Playing basketball with kids close to his own age seems like a good place to push him forward a little more.  Perhaps I just have to be a little more prepared for the one step back that comes along with his two steps forward when trying new things. 

I wish I didn’t care what other people thought, and with most things I really don’t, but when it comes to Down syndrome and people feeling sorry for us, I tend to come unglued.  I don’t want to be pitied or thought of as “that poor family”.  I want the world to see what I see.  A family that laughs and struggles and has killer taco parties.  A young man with almond eyes who loves his monster trucks, can read at near grade level and would eat macaroni and cheese every single meal for the rest of his days if I let him.  The one who loves basketball but can’t seem to get it together when it comes time to actually play on a team. 

One step back, two steps forward, one step back.  We’ll get there eventually.  We always do.

Friday, February 1, 2013

Remy being five

Dear future teenager Remy,
On the night you were born the stars shone bright in the cold, crisp sky.  My contractions had started two days before, growing stronger and closer together, leading us on an adventure of false-alarm visits to the hospital and lots of walking to try to move you along.  I have come to discover that nothing can actually make you move any faster than you desire.  Your speed and direction are often difficult to corral.  You know your own mind kid.

Once I was actually admitted to the hospital, and the doctor broke my water, you let us know you were ready and made your appearance a short five hours later.  You slid into the world so easily compared to your big brother.  Thank you for that experience.  Your birth was the closest to the one I had imagined, most resembling my mental picture of how becoming a mother would be.

I remember that first night, settling in to get to know you.  The angel's kiss on your collar bone seemed so large & I worried about it following you through life.  Now your body is so big & it is just a faint whisper of a mark, reminding me of that sweet moment when we first met.  On your birthday morning this year we marked your height on the wall in the kitchen.  You grew 1-1/4 inches in just three months.  How is that possible?  It seems that each day you bring something new to the table, some new discovery that delights & amazes.  You are making your way in the world at top speed.  Slowed only occasionally by the asthma that strikes whenever you get a cold.

Most mornings you like to stumble out, sleepy-eyed and bed-headed, in search of a hug and a cuddle.  I love hearing your sweet "Good morning Mama" to start my day.  Eager to share the contents of your latest dream your words spill out before any of us can catch up.  I listen intently to your adventures with dinosaurs, Darth Vader and Power Rangers.  I hope you will always share your dreams with me.

Baby Remy... your little brother looks so much like you sometimes!

Your favorite food right now is chicken nuggets.  I try to make healthy ones at home, but you prefer the grocery store version, laden with unknown chemicals & mystery chicken parts.  You also love peanut butter with jelly & honey on wheat bread with the crusts cut off.  You like to eat your apples cut in half, "just like Daddy does."

After school you greet us with an enthusiasm usually reserved for Santa or a parade.  The words can not tumble out of you fast enough as you share details of our time apart.  Please don't forget this.  We always want to know what fills your days, your thoughts, your heart.

Sometimes you are shy.  It always takes me by surprise since it is contrary to who you are the rest of the time.  You will talk to anyone, anywhere, anytime.  I am both thrilled and terrified by that fact.

You are a good brother.  Sure you fight over space, time & toys, but you also make each other laugh like no one else.  You look out for both of your brothers, making sure Quinn doesn't run away or that the baby has his preferred toy.  I love hearing the sweet falsetto voice you use with the baby.  You are a good helper, even though you won't go near a diaper for any bribe on earth.

You are a good friend.  I always hear from your teachers and other parents how caring you are with your friends.  How you cheer them on, or are the first to offer a hug and encouraging word to someone who is upset.  I love seeing you through these eyes... a glimpse at how compassion and empathy carry you through your life apart from me.

I often stand back in wonder at how your mind works.  You remember details from months past and bring them back up in perfect context.  Your stream of constant questions crack me up.  "What does Darth Vader eat?", "Do fairies whistle?", "How do germs see where they are going?"  I usually don't have the answers, but love being by your side on the quest to find things out.

Today you are five years old.  You have waited "soooooo long" to be such a grown up age.

We both thought you simply might burst from excitement before reaching this special day, but here we are.

And here I am, so very proud to be your mom.
Happy Birthday my sweet boy!