November 29, 2010


You know it's time to get away when your 3 year old doesn't know what a 'babysitter' is.  So off I go to an adult matinee for a break from the kids and some girl time with my BFF.  (And, no, monkey bear still doesn't know what a babysitter is because she was home with Daddy.)

Sitting behind us were two women.  Once the previews began, one of them started making comments way too loud.  After a few minutes it became clear that she has some sort of intellectual disability and was there with her mom.  As the movie begins - that would be the R movie with a lot of adult content - I get more and more uncomfortable hearing the questions from the daughter.  You can tell the mom had no idea what the movie was about and is trying to figure out what to do.  At one point the daughter said, "I'm 20 years old, I am old enough to see this." 

After about 10 minutes the mom talks the daughter into leaving.  It's funny how you go somewhere to "get away" and there is always something to bring you back home again.  Lately, I feel like I've been only getting reminders of the negative side of Down syndrome.  Stories about behavioral issues in school, kids wandering off, and reminders that even as a 20 year old adult, there are still concerns.

Today that changed.  I got a call from my cousin who has a friend that just had a baby with Down syndrome.  Her friend is deep in the grief stage.  I can remember how that feels.  But I am also privileged with loving a two year old with Down syndrome.  The fear and grief is gone.  It's replaced with a love that is beyond what words can describe.  As cliche as it sounds, there really is something magical in my buddy that wouldn't be there without that extra chromosome. 

I am thankful that Down syndrome has touched my life.  I will never be the same and anyone who is open to love my buddy will be changed by him.  Monkey bear will be a better person.  The rewards greatly outweigh the cost.

November 14, 2010


Monkey bear has never been a particularly outgoing child.  As an infant, she would cry if a stranger got to close to her.  She refused to talk in front of anyone else but us for a good 10 months.  As soon as the video camera comes out, she clams right up.  When we walk through the mall and are accosted by the baby talent scouts, I just laugh picturing her standing silently in front of the camera refusing to perform.

But lately, true fear has been rearing its ugly head.  Monkey bear is mostly scared of dogs and the dark.  Today a new fear showed up and surprised me.  We were sauntering through the mall just the two of us.  Monkey bear earned enough stickers on her chart for going to bed without crying and we were out to get her a special something.  She decided she really wanted tights and a fancy dress (not my child). 

There we were, tights purchased and searching for a dress to match (not an easy goal because the tights are covered with rainbow colored hearts and peace signs).  While admiring the huge Christmas tree and excited for a ride down the escalator - a treat without my buddy and the stroller around - we round the corner and spy Santa Clause.

As we descend, monkey bear becomes more and more frightened.  She has a death grip on my hand and is beginning to climb up my legs.  Once we are out of sight of Santa, monkey bear says she just wants to go home.  I convince her to at least buy a dress first.  She does not want to go and play, she does not want to come back to the mall until Santa is no longer there.

Who is afraid of being in the same mall as Santa?????

We LOVE the mall and use it as a free form of entertainment.  Where do these fears come from?  I try so hard to be understanding and empathetic.... tell myself if it was a tarantula sitting in that fuzzy green and red chair, I might not want to go to the mall either.  But there is a part of me that just wants to tell her to buck up and be brave.  I suppose we are in for some Santa desensitization. 

November 10, 2010

baby steps

After more than a year and countless dollars spent on sippy cups that didn't fit the bill, we have found a cup my buddy can use.  So the cup was designed for babies 6 months old.  At least he's not walking around with a bottle sticking out of his mouth.  The cup also has spouts designed for babies 9 months old.  Baby steps.  Here we come!!

I did learn something about my buddy and how he drinks.  He still swallows with his tongue out - much like an infant who is latched or drinking out of a bottle.  I tried to drink with my tongue out ... it's not all that easy.  So I can empathize with how difficult it will be for him to learn. 

I was reminiscing the other night about when my buddy was little.  I would try so hard to get him to laugh.  I'd pull out all the stops and he would stare at me like I was insane.  Now he thinks everything is so funny.  It's such an amazing stage.  I make a face, add a noise, and he is hysterical.  His whole face lights up without and trace of self consciousness.

My buddy has also brought it upon himself to be the ambassador of happiness.  Wherever we are, he catches the attention of any adult he can, says "Iiiiiiiiiii", and waves with a huge smile on his face.  No one can resist.  There is not a single person we have encountered that doesn't smile back and give a hearty, "Hi!" usually followed up with a, "He is so cute!".

Why yes he is.

November 6, 2010


I have never been very good at making a decision.  Especially those that will effect others.  I am relieved that monkey bear chooses her own clothes - even if she makes quite a fashion statement.  I even let her dress my buddy just so there is one less decision to be made.  Children come with countless daily choices.  What should I feed them, do they need a coat, should we skip nap today, are they getting sick... the list goes on and on.

When faced with a major life choice, I am stuck with fear of choosing wrong.  Which is funny because I think that most choices can work out in the end.  It just takes you down a different path, not necessarily a bad path.  I fear disappointing others and forcing the ones I love to join me along that path even though they might have chosen to go a different way.

I am still gathering information in hopes that the light will suddenly appear and trying my hardest to listen to that voice inside of me.