March 18, 2013


My buddy was very sick recently and while he is feeling much better, there is still something going on with him.  I'm not sure if it is post-sickness I am no longer getting everything I want or if he is still tired or something else.  Whatever the reason, he is now throwing himself down on the ground kicking and screaming when life doesn't go his way.

It was so bad after speech therapy that his therapist handed me a card for a behaviorist that will come to your house.  I left speech with Rara in one arm, dragging/carrying a flailing screaming boy with the other arm. 

When we went to pick up my buddy's new glasses, I had to hold him on the ground in full restraint so they could be fitted a little to his face. 

I hate it.  It is embarrassing and frustrating.  I find myself looking at the ground with my cheeks flushed and my pulse racing.  I want to tell anyone nearby that he usually isn't like this - really he is a sweet boy. 

It's not the first time that my buddy has gotten this way.  It happens from time to time and it eventually passes.  I would be lying if I said it didn't take its toll on me.  It's like playing with a timer and you never know when it will go off. 


Not to change the subject, but monkey bears grasp on Down syndrome always makes me laugh.  A friend's little brother came to class one day with his mom to help out.  Monkey bear said, "Even though he is only 3, he sat nicely and could talk.  I don't think he has any Down syndrome."  I love that the norm for her is to have a brother with Down syndrome who acts in crazy ways.  In monkey bear's little world, having a typical brother is unimaginable. 

March 5, 2013

giving back

When my buddy was born, I didn't know anyone who had a child with Down syndrome.  I didn't have a smart phone or even a laptop at the hospital with me.  I was desperate for any information and my pleas were answered in the most perfect way.

Michael's colleague had a daughter with Down syndrome and his wife called me.  She was so amazing - because she had been there and was far out of that dark tunnel and knew that life loving a child with Ds was wonderful. 

She was so patient with me, just talking while I blubbered on the other end barely able to keep it together.  I can remember holding my buddy and caressing his face while she told me it was OK to grieve for the loss of who I thought he was going to be.  She assured me that I would love this life with him in it.  She talked about how excited she gets when she hears that someone had a baby with Ds. 

She just had all the right words.  I thanked her once for being there for me - of course I started crying but it happens to the best of us.

I got the call I have been waiting for the other night.  An old friend just had a baby and surprise, he has Down syndrome.  She facebook messaged me and I sent her my phone number and we talked right away.  It felt so good to be the one on the other end of the phone.  (and she sounded just like she did in High School - the last time we talked)

I can remember every emotion from my buddy's birth.  But I also remember every time he drops what he is doing just to come over to me because he needs to give me a hug and a kiss. I know how proud of him I am.  I have seen all that he can accomplish.  I see how his peers want to play with him and don't care that he can't talk back to them. 

I really hope I was able to help my friend and reassure her that life with her son will be exactly how it is supposed to be.  She may have lost that imagined son, but she has gained so much more.