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Thursday, May 29, 2014

Figuring out what to say

Sometimes, when I'm out with Cooper, especially if Brad's not with me, it's hard to figure out what to say about Cooper.  A couple of weekends ago, for example, we were with some friends at a park.  Brad was at work, so it was just me and the boys.  My friend saw someone she knew, someone I would probably never see again, but she introduced me and my kids to the guy.  I could tell he knew that something was up with Cooper, who at three was quietly sitting in a wagon: not normal three-year-old behavior.  But I just didn't want to get in to it.  It's just too much.  If he had asked, I would have explained, in the most minimal way, that he has special needs, but why offer it?  I mean, like I said, I'll most likely never see him again.  On the other hand, I felt kinda guilty about it.  Like I was somehow shorting Cooper by not explaining why he was sitting by himself over in the wagon.  He was in the shade, next to the picnic table where all of our stuff was.  But at that very second, I was chasing after my very mobile, very energetic one-year-old.  And Cooper didn't mind.  He loves to look up at the leaves on trees.  I think he likes the way light filters through them (I mean, who doesn't?).  But still, I felt somehow disloyal to him.  Like he wasn't being included properly.  Ugh.  I know in my head that all of this is rather ridiculous.  Cooper is fine.  There is no need to offer anyone an explanation for anything.  But for some unknown reason, it bothers my heart.  Blah.

Tuesday, May 20, 2014

Cooper Happenings

A lot of stuff is going on with Cooper lately.  Good stuff.  Last week we had a medical home clinic appointment (a second pediatrician where we also see social work, nutrition, speech, psychology, etc.). In the last six months, Cooper has gained no weight, but he has gotten 2 inches taller.  So, yay!  There, we also discussed starting to give him fruits and vegetables through his tube in addition to the formula.  And it's officially a go (GI had to approve as well)!!  We'll start by just giving him an ounce or so a day and go from there.  Hopefully food will eventually replace a lot of the formula.

Pureed carrots.  We literally have to start at the beginning again.

In other, probably more exciting, news Cooper is continuing to take steps in therapy and today he stood on his own!  Go Cooper Go!!

While Cooper was at the doctor, Semmes went to a friend's house to play.  He had so much fun with his pal, Lincoln!  Thanks, Liz, for watching him for us!!  Several hours in a clinic room would not have been any fun for him.

Lincoln sitting in Semmes' lap; he was not impressed.

Overwhelmed by all the new-to-him toys.

Snacking on a cutie.

Fun in the kitchen!

Saturday, May 17, 2014

If you want to know more about life with Cooper (a book review)

I stumbled upon a book that, when I was reading the synopsis, seemed to mirror our life with Cooper.  His son also has a rare genetic disorder and has many medical and developmental hardships because of it.  It's not exactly the same; their child, Walker, is in some ways more advance and in some ways worse off than Cooper, but the experience is close enough.  In almost every chapter I've read, I've found myself close to tears and I understand exactly what their family is going through.  Anyway, this part really spoke to me today, so I decided to share.  Their son, like Cooper, doesn't talk.  He's much older than Cooper, but is at a much lower level, developmentally.  The author, Ian Brown, spends a lot of time contemplating exactly what it is that goes on inside his son's head.  I totally get that.

"[This] reminds me of a poem I once read in a magazine, by Mary Jo Salter:

None of us remembers these, the days
When passing strangers adored us at first sight
Just for living, or for rolling down the street.
Praised all our given names, begged us to smile.
You, too, in a little while, my darling,
Will have lost all this, 
asked for a kiss will give one,
And learn how love dooms one to earn love
Once we can speak of it.

My boy Walker has no worries there.  He never asks, yet is loved by many.  But I doubt it feels effortless to him.

'I hear parents of other handicapped kids saying all the time, "I wouldn't change my child," Johanna said one night as we were lying in bed, talking as we fell asleep. "They say, 'I wouldn't change him for anything.'  But I would.  I would trade Walker, if I could push a button, for the most ordinary kid who got Cs in school.  I would trade him in an instant.  I wouldn't trade him for my sake, for our sake.  But I would trade for his sake.  I think Walker has a very, very hard life.'"

I was literally yelling, "Yes" at this.  I've talked about similar things before here and here , but I especially loved the poem.  Cooper is so loved and so adored by so many people.  But for Cooper's sake, I would trade all of that for the most typical, average child in the world.  Anyway, the book is called The Boy in the Moon: A Father's Journey to Understand his Extraordinary Son.  Read it.  It's great.

Sunday, May 11, 2014

Water Play

Semmes is a water baby.  Thank goodness.  For his birthday, Brad's parents got him a pirate ship water table.  We delayed opening and setting it up until it was consistently warm, which was last weekend.  We've played with it almost daily since then.  But these pictures are from the first time he got to experience it.  Yes, he's in regular clothes.  I didn't know just how wet a kid could get from just a few inches of water.  Lesson learned: he's been in a bathing suit every other time!

The water table:

Semmes seeing it with water for the first time:

He LOVES it!

The hand to his mouth is him trying to drink the water out of it.

Saturday, May 10, 2014

The Zoo

Last Saturday, Brad had the day off.  So we went to the zoo as a family!  It was super fun.  And again, thanks mom and dad for getting Semmes a zoo membership for his birthday!!

First, we saw the penguins (Brad's favorite)

Cooper was not impressed. 

Once again, the tiger cubs weren't out.  Even though the zoo's website claims they're out every morning between 9 and 11:30.  Boo.

Cooper's starting to warm up to the zoo now.

Those are leopards.  Promise.

Really cool snake with a rhinocerous nose.

Not sure why this picture is completely out of order...

Now, he's super happy!  Yay for the reptile room!!


Semmes had the run of this big room, so we let him at it.

Semmes or scarecrow? 

The geese were really interested in Semmes.  But there were about five signs warning that they bite, so we didn't let him get too close.

And every zoo visit includes a visit to their playground.