Tuesday, July 21, 2015

What Defines Us

I once had someone ask me if we didn't, perhaps, identify too much as the family of a child with special needs?  I remember feeling bewildered. I didn't answer.   How could I answer?   How was I supposed to answer?  I wondered what our life looked like from the outside.  However that was, it probably didn't accurately reflect our reality anyway.   There's a reason parents of kids with special needs tend to hang out together.  Nobody needs to explain anything.  How could we not identify ourselves as the family of a child with special needs?  How on earth would it be possible to do less of it?

We try very, very hard to do things with M. on his own and encourage his own interests.  Sometimes our efforts are more successful than others.  We don't expect him to be responsible for his brother too much in the short term, and while we hope he will want to in the long term, that's not something we dictate to him. (Though I will freely admit that any significant other he brings home will be scrutinized, especially how they interact with P.)  But doesn't his brother's existence, his very twin-hood, define M. to a certain extent?  In the same way that my having nine siblings defines me and my husband's strong Italian heritage defines him, the way we grow up shapes the people we are. To what extent do we define ourselves and to what extent is that definition thrust upon us, either by circumstance or accident or luck?

P. has spent the last 10 days at a local camp that serves children with special needs and those who are economically disadvantaged.  Amazingly, this is his 5th year attending.  That's hard to believe when I think of how we chickened out and decided not to send him at the eleventh hour the first year he was eligible to go. We only agreed to let him go the following year because our amazing friend K. volunteered for the week and was able to send us daily reports.  I remember being amazed at the "veteran" parents who threw a sheet on the bed, kissed their kid on the cheek and left.  They just... left.  We stayed far longer than we should have that first drop-off and M. begged to stay because "who will take care of P?"  For that entire week we didn't dare move very far from the phone in case he was miserable and needed to be picked up right away.  We talked about him constantly.  The second, third and fourth years he attended, P. jumped out of the car when we got to camp.  We felt more comfortable leaving him, though we still cried on the way home.  Still, we ventured farther afield with M. and were able to stop worrying for longer and longer periods of time.

This year P. was excited to go, he started bouncing in his seat when he recognized the road.  But he didn't leap out of the car.  He treated it more like home.  He waved hello to everyone, strolled into his cabin and picked out his bed (top bunk, of course).  After we put the sheet on his mattress, he shooed us away.  He climbed up and set it all up himself -- pillows and blanket and Barney and Blue and Woody and Buzz and water cup just the way and where he wanted them.  When it was time for us to go, he didn't cling even a little bit.  I was happy about it in the moment.  "Look how mature he's getting!" We were different as well. We knew he was in good hands and that he would have a lot of fun. We chatted to the counselors we knew.  But instead of instructions about P. we asked how their year had gone and what were they doing now?  The walk to the car was easier and we didn't cry.  M. had a camp the same day and we had to get him where he needed to be on time. We couldn't dally. It seemed we had matured as well. We had become the parents I marveled at the first year.  We just... left.

Without having to get up for summer school, we all indulged our night owl tendencies and slept in later.  It was very quiet. I felt more successful in my attempts to meditate.  We spent all day gardening or at museums or fossil hunting or visiting Toronto.  We even saw a movie that wasn't animated.  We ate out at restaurants without caring whether pasta was on the menu.  We shopped for furniture without worrying about whose patience was waning.  There were no complicated vitamin regimes to prepare (and consequently, none of us took our vitamins either).  My husband and I each went to events without in-depth discussions of schedules. We didn't think about therapies. I went to work and didn't panic about being home in time for the bus.. No one's bowels were the topic of conversation. No one needed their meat cut or help getting their teeth brushed. I didn't have to translate anyone's communications.  I almost never had to look at someone's clothes before they left the house to make sure everything was on right. We were able to take long showers without making sure someone else was watching to be sure P. didn't wander outside in his underwear or decide to sit in the hot car or eat the entire contents of the cold cut drawer or try to turn on the stove or drape the waiting laundry over the furnace and hot water heater.

That's not to say we didn't miss him.  Of course we did!  When it rained, we worried he wouldn't be able to swim.  And when it was sunny, we worried he was giving the counselors a hard time getting out of the pool.  We hadn't sent as much food with him this year, was he eating most of what they served?  In the past he has gone to the Christmas in July session -- was he wondering where the tree and the decorations were?  Perhaps there was a theme for this session that we should have known about and talked up.  I noticed that M. was sleeping in his brother's bed.  He didn't want to do some of the things we suggested because he wanted P. to do them too.  He invented a new game that he couldn't wait to show his brother how to play. The large hole in the day was more than just P.'s absence.  I found myself constantly analyzing thoughts and emotions. What exactly was different this time?  And why was it different?

And then as we were in the kitchen last night, making P.'s favorite pasta salad for his welcome home meal and talking about what time we had to leave this morning, my husband hit the nail on the head.  "This week has been too easy.  It feels wrong somehow."  With just M. to worry about, everything was easy.  Had we been experiencing life as a "typical" family?  Is this what family life feels like for most people?   That's not good or bad, just something we have never experienced. It felt like we were coasting through life. If we had this existence all the time, we might forget to be grateful. We might forget to strive for someone other than ourselves. We might forget to be cheerleaders. We might forget to be who we are.

As I am typing this, the television is blaring, and the rhythm of lots of little figures being dumped out of their bucket and put back in resounds through the house.  I've had to negotiate snacks and supervise wiping and cut up meat.  At least ten times, I have said "Leave your brother alone!"  I've packed the backpack for school tomorrow and made sure the speech device is charged and that we have lunch supplies ready.  I have washed all the bedding so that Barney and Blue and Buzz and Woody can go back to their normal places.  The vitamins are laid out.  Everyone is where they should be and everything is once again as it should be in our world.  And to my mixed feelings of gladness and regret, P. has signed "more" and said "more camp" and "go camp" several times since we arrived home.  He is trying to get used to the normal routine again too.

This year, camp gave us a taste of what life might be like when M. and P. don't need us on a daily basis. Children grow up and move on and parents learn to redefine themselves in the wake of those milestones. We expect our typical children to do that.  We're proud of them when they do.  But our children with special needs?  We set up trusts and we arrange for guardianship and we put them on a waiting list for an independent living situation when they're 11 because those lists are so very long.  We never talk about our fears that it might never happen. And maybe if we're totally honest, we're equally afraid that it will.  And yet our children mature and grow just as others do.  They become more independent in their own ways and eventually they begin to build a life away from us, even if only an internal one.  Even if it is inch by inch over a long period of time.  Sometimes it begins with the return to a place they feel at home in, with people they feel safe with.  And we have to let them do it.  Even when it's hard.  Especially when it's hardest on us.

I am the parent of a child with special needs.  That role does define me. I am the parent of a typical child. I am the parent of twins.  Those roles define me as well. But now, maybe, as time goes on... I see that other things, some long-forgotten, and some new, can define me as well.  And I will need to sit in the noise with these thoughts until I become used to them.

Friday, July 10, 2015

Dear Menopause

We are through!  Through, I tell you!

We've known each other, what?  8 years now?  I admit, I wasn't on board with our relationship in the beginning.  You pursued me more than I thought seemly.  But you wore me down and it was just easier to give in.  Fine, I said, we can hang out sometimes, just don't crowd me, give me my space.  Then just when I was getting used to  having you around, you went off on this massive game of hide-and-seek and disappeared for 11 months.  Then you came back all raging and crazy and acted like it was MY fault because I told you to get lost just that one time. I still haven't really forgiven you for that.  

Yes, there have been tears and bitchy fights and some anger management issues.  It totally was too your fault.  It was!  Let's not have that argument again, ok?  Ok.  Overall, I've tried to maintain a relatively cordial relationship and just kind of try to live in a peaceful coexistence with you. Which has not been easy with the crap you have pulled.  Oh, really?  You are soooo not the innocent party here.  I'm not getting drawn in to your drama anymore.  I'm just trying to deflect all your negative energy and move on with my life over here.  Those hot flashes that have gone on for way longer than you promised?   I like not having to carry a sweater everywhere.  The newly sparse eyebrows?  Not having to tweeze everyday gives me 10 more minutes of free time.  Then you hit me with the chin and neck hairs.  Ok, I can deal, the Tweezermans are still in the top drawer.  The never-shrinking muffin top?  Empire tops are all in style now.  Just yesterday there was a really good sale.  Then there's the freakiness of my neck, what about that, huh?  Nora Ephron tried to warn me about you.  But did I listen?  And the saggy upper eyelids?  I can live with those, my glasses hide the worst of it.   The crepey skin on my hands?  You're not my only friend.  Moisturizer likes me too, you know.   How about the grey hairs that are totally a different texture than the rest of the hair on my head?    I rock the short hair.  The forgetfulness?  Why do you think they invented post-it notes, huh?  The sleepiness?  Well, I've always liked sleeping.  Sleeping is one of my talents!  Forgot about that, didn't you?  Proof that you don't really listen when I talk.  So, you counter with insomnia?  There's... I... Just...  You are SUCH a bitch!  Yeah, don't act like some of this has nothing to do with you.  It does.  Who let Aging in?  You two are like bosom buddies.  I told you no sleepovers, didn't I?  If anyone's gonna sleep around here, sweetie, it's gonna be me.  But no.  You had to have a buddy.  I go away for a weekend and you have a party and now we're all sharing closets.  Own that one, honey.

But this latest stunt?  You have gone too far this time.  I am done.  Done.  I mean it this time.  Pack your bags and be gone by morning.  Nose hairs.  There's the line.  I am drawing the line.  Right there.  I AM DRAWING THE LINE, DO YOU HEAR?

Love, Me.

Sunday, February 15, 2015

13 Things About You at Age Thirteen

Teenagers!  Yikes!

  1.  You got Warhammer for Christmas and are enjoying the process of putting together your army.  You are thinking about paint colors and figuring out the rules of the game.
  2. Your favorite meal right now is fake chicken.  You're still not crazy about vegetables.
  3. You are very interested in healthy eating and I often find you replacing things in the grocery cart (and we eat pretty healthy already!)
  4. You like to try unusual drinks, like Birch Water (sap from birch trees) or things with vinegar in them.
  5. You still love archery.
  6. The family near-sightedness has appeared.  Your glasses will be ready this week.
  7. You want to be in charge of the garden this year.  Maybe that way it will actually happen.
  8. You like your hair a little bit longer.
  9. Your favorite shirts are the ones with the hoods.
  10. Your favorite movies right now are The Hobbit (all of them) and The Secret Life of Walter Mitty.
  11. You love to sneak up on us ninja style.
  12. You are still a night owl.
  13. We like to watch baking shows together.  The current favorite is the Great British Baking Show.

  1. Swimming is still your best thing.
  2. Your favorite Christmas gift was Wiggles DVDs.
  3. You are a pro at using the iPad.
  4. Spaghetti or any kind of pasta is still your favorite meal.
  5. Your favorite shirts are the ones with stripes.
  6. You like your hair a little bit shorter.
  7. You love to set the table and you like it when we have dinner by candlelight.
  8. Every morning I scrub your face and then realize your face is not dirty, you have the start of a mustache.  Eek!
  9. You are still a lark.
  10. You like to go grocery shopping, especially at BJ's.  
  11. You still love hats and wear one every day.  The current favorite is a black top hat.  But I think this plaid one you got for your birthday might replace it.
  12. The physical therapist at school says you love the exercise bike and the treadmill.  She has to make you get off!  We were very surprised to hear this.
  13. You love to take photos.  Of what you are watching on television, of things in the refrigerator, of us, sometimes even yourself in the mirror.  And you take a lot of them, you can fill up a memory card in a few minutes.  I keep the really good ones.

Owl Always Love You

Progress  on the needlework goals!  This little bellpull is for sweet baby D.  She's almost 4 months old so I think it totally counts as a new baby present.  Her room is all woodland animals so these sweet owls really jumped out at me.  And her mom said it arrived in the mail so now it's safe to show a photo :-D  Whoooo else may be getting a stitched gift this year?  Wait and see!

Friday, January 9, 2015

A Series of Haikus Celebrating Winter

Today is our first real snow day:-D

whisper in the dark
snuggle down in soft blankets
yay no school today
hate this itchy hat
and these gloves are too awful
Mom do I have to
cold air fills my lungs
makes my cheeks red and my nose run
sun fools me, not warm
my shovel lifting
sparkly frozen arcs of ice
pavement hides below
back into the warmth
smell of bacon makes me happy
now for the fun part
cousins will come
to build a massive snowman
or maybe a fort
snowball fight breaks out
oh! icy cold down my neck
that's not very nice
hot cocoa after
with the big marshmallows please
and whipped cream too?
socks and snowpants in
the dryer tumbling round get
ready for round two

Wednesday, December 31, 2014

Best Books of 2014

The book count for this year was 45.  Less than my goal of 52, but I'm ok with it.  Because a)  most of the 45 I really enjoyed and b) I decided to add needlework back into my life just as I did with books a few years ago and I actually did stitch a few things. So yay me again!  I reread the entire Outlander series (which includes reading Book #8 twice, once when it first came out and then again at the end of the reread) to console myself for not having cable and seeing the physical manifestation of Book #1 onto the screen.   I still haven't decided whether cable is worth it, because DVDs have to be coming at some point, right?  And the books are always better, right?  Anyway.

These are the books that got 5 stars from me in 2014.

  • Journey by Aaron Becker.  I loved the illustrations in this children's book and the clever girl who uses her imagination and determination to create her own destiny and find friendship along the way.
  • Me Before You by Jojo Moyes.  This book stayed with me for a long time.  Lou Clark likes knowing what comes next.  She leads a relatively unexciting, safe life and she likes that just fine.  Will Traynor used to live an exciting, dangerous life and he liked that just fine.  He doesn't like the life he leads now as a quadriplegic.  When Lou takes a job as Will's caregiver, both their lives are turned upside down.  They push each other forward in unexpected ways.  This book got me thinking a lot about the boxes we put ourselves -- and others -- in.  Can we grow out of our boxes?  Do we want to?  What happens when we want to stay in our box and someone else wants us to come out?  
  • Mr. Penumbra's 24 Hour Bookstore by Robin Sloan.  It would be fun if there really was a bookstore like Mr. Penumbra's.  Clay Jannon takes a job working the night shift at the bookstore after having been laid off from his web-design job.  The comings and goings of a lot of strange customers who never actually buy anything convinces Clay that there's got to be something else going on besides books.  And there is.  What follows is an adventure that is a lot of fun.  I loved the mystery and trying to figure it all out.
  • The Snow Child by Eowyn Ivey.  I loved this modern-day fairy tale.  Because I've lived in Alaska I understood both the loneliness the main characters feel and the exhilaration of living in such a wondrous place.  Jack and Mabel are homesteaders in 1920.  They are losing their way, both from the burden of trying to eke out a living in a harsh environment and from the sadness of not having children of their own.  In a moment of fun, they build a child out of snow.  The next morning they see a little girl running through the trees.  Faina hunts with a red fox at her side and seems to be part of the landscape.  Somehow she survives alone in the Alaskan wilderness.  Is she real or a figment of their imagination?

  • Little Bee by Chris Cleve.  Another book that stayed with me long after I finished it.  Little Bee is a Nigerian orphan whose fate is inexplicably tied to a well-off British couple, both journalists.  From Little Bee's perspective, our world is confusing and inexplicable just as hers is for Sarah, Andrew and their son Charlie.  And yet somehow they form a bond that is stronger than they expected.   I can't tell too much without giving it all away and the beauty of this book is its ability to surprise and yes, shock you.  It makes you think.  About your place in the world and who decides who gets what place and what advantage?  What is our obligation to others in the global community?  What is our obligation to ourselves and our families?  What makes a family?  
  • Written in My Own Heart's Blood by Diana Gabaldon.  My overwhelming feeling on finishing this book was "oh good, the story is not over yet!"  Even though it takes Gabaldon upwards of four years to write the next installment of Jamie & Claire Fraser's saga, I will wait patiently.  And if that patience wears thin, I will just go back to the beginning and enjoy the eight books there are so far again.  This book finds Jamie & Claire embroiled in the start of the American Revolution and all the attendant troubles that brings.  But at least they can take comfort  that their daughter Brianna and her family are safe in 20th century Scotland.  In reality, young Jemmy has been kidnapped and while Brianna searches for him in the present, Roger has gone back through the stones searching for him in the past.  And in true Gabaldon style, the ending only leaves you wanting more.  
  • The Sea House by Elizabeth Gifford.  Books that tell parallel stories from two time periods are among my favorites.  In 1860, Alexander Ferguson takes a post as the vicar of a parish on the remote Scottish island  of Harris.  He is an amateur evolutionary scientist and hopes to uncover the truth about the local tales of selkies (merdmaids or seal people).  In present day, Ruth and Michael buy a dilapidated home on the island and begin to renovate it with hopes of starting their own family soon.  The discovery of the bones of a tiny child buried underneath the house raise all kinds of questions.  The child's legs are fused together.  Is it a mermaid?  To move forward, Ruth must find the truth about the past and in so doing deals with her own past as well.  
  • Dear Mr. Knightly by Katherine Reay.  Samantha Moore relates to literary characters more than those in her life.  When it is hard to make conversation, she quotes her beloved Jane Austen and Charlotte Bronte heroines.  When an anonymous benefactor calling himself "Mr. Knightly" offers to put Sam through the prestigious Medill School of Journalism, she is afraid to accept and more afraid not to accept.  There is only one condition: Sam must write frequent letters to her benefactor.  At first the letters are short and to the point, but as time goes on Sam finds Mr. Knightly's anonymity allows her to share more personal information, which in turn gives her the courage to open up in real life.  The letters allow her to come to terms with her past and move forward into the future.  But how will she cope without letters to Mr. Knightly once she graduates from her program? 

New goal for 2015?  To read the Book Club books in the month we're supposed to :-D

Monday, March 17, 2014

12 Things About You at Age Twelve

I know I say it every year, but 12?  How did that happen?

  1. You started taking archery lessons and you really really really like it.  The instructor really makes it fun by attaching things to the targets - dollar bills, balloons, turkeys at Thanksgiving, and everyone's favorite, apples. 
  2. It cracks me up that you walk around with a sword down the back of your shirt.  And there is another one by your bed.  Because as everyone knows, ork attacks, ninja surprises, and dragon raids could happen at any moment.
  3. When you get sick, even if it is a relatively minor illness, it hits you hard and it takes a long time for you to recover.  You do not like taking medicine.  You have to be cajoled and have a glass of water to hand and I keep having to tell you to take all of it.  I hate it when you're sick.
  4. You like to watch cooking shows and you're interested in how ingredients go together and want to make up your own recipes.  You thought Home & Careers would be boring this year but you are having a lot of fun in that class cooking and learning to use the sewing machine.  You made a fabulous pillow.
  5. You've got a knack for languages.  You wish school offered Norwegian, but had to settle for Spanish, which you are picking up fast.  We also have a calendar with a phrase in Latin for each day, which I put in your lunch box.
  6. You spend a lot of time on the computer.  Minecraft and other games, yes.  But you watch YouTube videos on how to construct things and music videos and movies too.
  7. You are interested in blacksmithing and wood carving and sword kata don't understand at all why all the lessons we have been able to find (if we can find them) state that you must be 14 or 18.  You feel you are totally capable of it and think all this liability/insurance/maturity argument is hooey.
  8. You came home one day and said you tried out for All County Chorus.  4000 kids try out!  You won a spot representing your school and will perform at the symphony hall in March.  We're all pretty excited and proud of you!  You are not even complaining (much) about getting up early for extra rehearsals.
  9. You are campaigning for a hedgehog.  They are only $200.  They are so cute!  You can teach them to do tricks!  And they are so cute! They are not expensive to take care of!  And they are so cute! They eat cat food!  And they are so cute!
  10. You are interested in architecture too.  You draw a lot of buildings and think about how they should be designed to be energy efficient.  You came up with a circular garage which is brilliant and I think we need to build right now.
  11. You have discovered Pinterest and are pinning and sending me pictures of dragons, gardens, cakes and things you'd like for your room.
  12. You have a renewed interest in your Magic cards.

  1. You have been trying a lot of new foods lately.  Tacos, gummy lifesavers, cookies, asparagus, green beans... You don't like all of them, but at least you are willing to give it a try.
  2. You still love hats!  Your current favorite is a top hat with a plaid ribbon and some felt holly that N gave you for Christmas.
  3. Continuing in the opposite-of-your-brother vein, you almost never get sick.  But when you tell me something hurts, like an ear, then I know it really hurts.  You've probably had antibiotics 3 or 4 times in your life, and that's including your heart surgery.  You're usually back to your old self in 24 hours, 48 at the most.  You used the iPad to tell the doctor "I'm grumpy! My ear hurts!  Give me medicine!"  You don't complain about taking medicine, you just do it.
  4. Since bunnies came to live in our yard last summer, you are all about the bunnies.  You look for their tracks in the snow, you want to leave carrots in the yard and you are always pretending to be a bunny and hopping around.
  5. You are doing a really great job brushing your teeth and getting dressed by yourself.  I might have to adjust your socks a bit and occasionally something is backwards, but in the mornings you get ready for school on your own and in the evenings you get ready for bed on your own.
  6. You like to take pictures.  Lots of pictures.  Last time I synced the iPad it had 20,000 pictures on it.  (yes, you read that right).  You use your camera, my camera, the iPad, your brother's iPod, my phone, if it takes pictures you are using it.  Mostly they are pictures of your friends on the tv - the Wiggles, Dorothy and everyone in Oz, Snoopy, etc.  But you also take these still lifes - the shelves in the refrigerator, the bathroom counter, the coffee cups on the table, the clothes in the hamper, the contents of your backpack, the insides of a drawer.  And sometimes I find one of your brother (see above) or Daddy or me that I didn't even know you took.  I love these little insights into what is important to you and unusual snapshots of our daily life.
  7. You are very happy when K comes back to Buffalo to visit and you grudgingly accept that baby she keeps bringing with her. You are equally happy that J is back in town and comes to spend time with you.  You were a little bit mean to him at first until you realized he was staying.
  8. This winter you have actually wanted to go out to play in the snow!  You put on snowpants and boots and gloves and a winter hat and a scarf and you actually yelled at the other kids to hurry up and come on!  
  9. It takes you an hour to eat a bowl of soup because you don't really scoop enough onto your spoon.  But if you're happy to sit there for that long, who am I to argue?  You even used chopsticks to eat the noodles after watching your brother do it.  You got some too!
  10. Swimming is still your best thing!  Coach Snoopy is really proud of your progress!  You are participating in your first swim meet in March.
  11. You love the iPad and the fact that you can carry it around with you.  You can swipe with the best of them and watching Netflix from any room in the house is the coolest thing ever.
  12. I love that when you are eating spaghetti or something you really like, you close your eyes and smile beatifically.