Friendship

Color for Alex - Show him he has Friends!

https://dl.dropboxusercontent.com/u/23993460/Al_Pal_Coloring_Page.pdf

One weekend Nick said to me, "I have a best friend.".  I said, "Really, who is your best friend?".  He said the boy's name, and then he said, "He is my best friend."  I said, "How do you know he's your best friend?".  He said" because I like him and we play".  I said you have other friends too, and we listed them out.  He said, "he is my best friend." That's the kind of conversation that just warms your heart.

We mostly think about surviving Hunter Syndrome, but the quality of a person's life is just as important. Nick is living a good life with a best friend.  How endearing!  We don't think about this until we have to...each clinical trial visit there's a parent interview where I have to answer a lot of questions about our kids.  There's one question that is absolutely beginning to destroy me.

"Does Alex have any friends?" 

In my mind I think...

Jack has a best friend.  Nick has friends.  Does Alex have friends?  I don't think he does. How could anyone not have friends?  He has to have one...think, think.  He has his brothers but those are his brothers.  I think he stands by people but does that make them his friend?  People try to play with him but that's probably not a friend either.  I know children have been told to be his friend. I wonder if the other special needs children have friends in his current class.  I know Jack appreciates special needs kids more and that they need friends too. Maybe he has friends and I just don't know about  it.  She needs an answer to her question, answer her...the answer is "No".

Then this comes out: "Would you be friends with Alex?  He's big and intimidating.  He doesn't talk very much so there's not much engagement.   In typical classrooms, I see children run away from him or look scared. It's sad.  I cannot completely blame them because he used to bite or pinch but he doesn't do that anymore. I am hoping this improves.  I hope he gets a friend."

Alex is not only being robbed by Hunter Syndrome of his ability to communicate verbally, to have a healthy body, even his life, but he's being robbed of friendship...the gift of friendship and I know it is a gift. Alex is a child who has feelings, has deep love, and we receive a lot of his affectionate hugs.  I know he has the desire for a friend.

I recently told one of my friend's mom's, "that being friends with your daughter is a gift".  It's a treasure, a gift like no other gift. The gift of unconditional love that doesn't come from a sister or a brother but someone who chooses to be your friend.  I would never be described as really emotional (until I turned 40!!) but this will likely sound like a love letter about friendship.  Every breath I take, every tear that drops, the deepest of laughs, or the strength I exert is felt by my friends. I can tell.  I just know it.  I can't tell you how much comfort I take in friendship.  I feel some of my friends deep in my soul.  Some don't even live close to me but I feel their love and support, and I truly love them back.  I feel their pain, and their triumphs, I know when something really means something to them or is just a passing annoyance.  Friends make the simplest of gestures that mean the most; a hug, a look, a like, a post, a text, a RT, a call cleverly inserted into your calendar, a meet up, a quick phone call, or an IM to tell you they admire you and sometimes opening your wallet for something you know hurts your friend the most - their cause, their drive, the life of their child. Every gesture means something, something great because it's the one you personally picked.  I have read all of your words and they'll never, ever be deleted from my mind. I have heard your stories, sometimes of normalcy or not, sometimes hysterical, and sometimes not but your every word means a lot. You might not think I am talking about you but I am.

This is one of my wishes for Alex, the gift of friendship.

So there will be an event in the coming year, called "Friend Fest"because there needs to be some action here.  We'll have a big play date somewhere fun for all of us to be!  You'll bring a friend, and he'll bring a friend, and they'll bring a friend. There will be shirts that say "I'm Alex's Friend". Then I'll never have to say "No" to that question again.

Until then we made this coloring page! Color for Alex, show him he has friends!  https://dl.dropboxusercontent.com/u/23993460/Al_Pal_Coloring_Page.pdf 

Color the page, post in it your window at home, on your refrigerator, post your pic on my Facebook page,https://www.facebook.com/amy.cherrstrom, tweet me a pic at  @AmyCherrstrom with #Alexismypal #Art4Al or pin it on Pinterest: http://www.pinterest.com/cherrstrom/

https://dl.dropboxusercontent.com/u/23993460/Al_Pal_Coloring_Page.pdf

The Cherrstrom Family