Old photos of Joseph

I've been trying to send some old photos of our Joseph to Jerry's friends who also have a Joseph, and both Josephs have a unique genetic disorder--not the same disorder--each has a genetic arrangement all his own.  The email version didn't work, so I thought I'd try the blog.  Since I didn't start blogging until Joseph was 8 or 9 I've never posted baby photos.  Getting these out reminded me of how far we have come--has it really only been eleven years!  These photos from 1997 seem like a lifetime ago. They are--Joseph's lifetime.   The first is from the hospital when J was born.  The second is a few days after the first clef lip surgery.  His lip is very swollen, but the lip is all sewn together.  As you can see from the third photo, the surgery did a good job!

I remember having the crib set up in the family room so the night nurses could move around, watch TV, get to the kitchen, etc.  Joseph couldn't be left alone--ever.  If the trach would plug, he would not be able to breath.  

A few years later, he looks pretty good, but still has the trach and the hearing aids.  I'm thinking this is 2000? Ah, memory lane.  

And all of this is hard for Alex.  He saw me looking through Joseph's baby photos and he wanted to see HIS baby photos.  We don't really have any.  We have a few from his foster family... and I need to go through that material to find those to put in an album for Alex, but two or three photos compared to two or three albums full of baby photos...  it is hard to explain.

 

Autism and Down Syndrome

I was confused during the debate last night.  The candidates wanted to reference children with special needs--and McCain, I think, was trying to push Sarah Palin's expertise on the subject.  As far as I know, Palin's only relevant credential is as a brand new "Miracle League Mom."  Her 5 month old baby was born with Down Syndrome.   But McCain talked about her expertise with Autism???   Obama picked up on it and also made a brief comment about how autism is on the rise...    How did we get from Down Syndrome to Autism???   Is anyone else confused?   Does Down Syndrome not have a high enough profile and Autism is a more common disorder, thus talking sympathetically about Autism would reach more voters?  Do people not understand the difference?  I can believe that some people may be ignorant, but not educated people--not McCain or Obama?   Or, not if they are going to talk about it in a Presidential debate.  I found it distressing.  

Our Joseph has had a rough 24 hours.  Report from school yesterday was he fell apart at the end of the day.  He had a rough night.  No fever so I sent him to school this morning with instructions to call me if he had trouble.  I got the call at 1030.  I picked him up and took him straight to the Dr.  No ear infection.  Maybe a sinus infection.  Give it a day or two before starting antibiotics...  It is hard when he can't tell us what hurts, where, how much, how long, etc. etc. etc.   He just knows he doesn't feel well, so he acts out.  Welcome to the world of the Miracle League Moms.  

PS  I just read on Autism Vox that Palin has an autistic nephew.  Perhaps McCain could have made that clearer, if that is the source of her expertise.  As it was--it was just confusing...

Morning people

Most of my life I've been a morning person.  I jump out of bed ready to go.  Wide awake.  My best work gets done before noon.  Late afternoon is hard.

That is, most of my life.  Of late, I'm neither a morning person, or an evening person.  I crawl out of bed and straight to the coffee pot.  This morning was particularly hard?  I wonder if this is yet another symptom of not taking the best care of myself, or is this just age???  I thought I was supposed to need LESS sleep as I aged.

Whine, whine, whine...

Under the Weather

We had a big weekend planned--and I started getting sick Friday night.  I managed to get through the whole day Saturday before crashing for the whole day Sunday.  Dave and I cleaned house Saturday morning and then took the boys to hear the OSU marching band before the game--  The band plays a free run through of the music for the game starting two hours before kickoff.  They draw probably 5,000 to hear the show.  I was supposed to be on the floor with the band, but we were late, and ended up in the stands.  Ironically, we sat next to an elderly man that had been born with a cleft lip and palate.  I had noticed how his profile resembled Joseph's, but thought he must have tooth issues because of age.  He stopped Dave as we were leaving to introduce himself and proudly told Dave his cleft had been "bilateral."  He was very interested in Joseph.  So, it ended up being a great blessing that we were late and NOT on the floor with the band.  

The boys went to a day camp on campus during the game.  It is held in the student rec center.  They swim, play, watch the game, and hang out with other kids.  It is easier than finding a sitter, and costs about the same.   I like including the boys in game day activities.  

The game itself was a snoozer, but we had tickets from a colleague who has GREAT seats.  We were surrounded by players' friends and family.  Row nine, 40 yard line.  Absolutely fascinating to sit that close.   It is a whole different experience than we have in our usual seats.

The cherry on top of the sundae for me Saturday was seeing two friends--one I used to work with that moved on to bigger and better things, and one from our old neighborhood.  I miss them both so much.  I must do a better job staying in touch.

okay, now what do I do???

Joseph's latest trick--Let's climb on top of Mom's pretty desk in the living room.  The one she keeps locked with all her most precious things safe behind the display glass.  Yes, I know I should be worried about my child, not my china, but REALLY!!!  I asked Dave about it--Dave says Joseph's been doing this for the past two weeks.  Where have I been?  Tonight, I just turned out the light and left him up there for awhile.  He hasn't figured out how to get down without help--and despite the risk of breaking bones and/or bone china, I left him up there for a few minutes...  When I went to help him down he seemed genuinely interested in getting his feet on the floor.  

Sally--Do you recognize the desk?  

Surviving the Amazing Race

My closet obsession, over the past few years, has been reality TV. Survivor, the Amazing Race, and Big Brother are fun and entertaining. Yes, I know it is a waste of perfectly good time. I could be reading or sleeping or staring at the wall and I’d be doing something far more valuable. I’ve justified my obsession with phrases like “I just need to relax at the end of the day…” Even I don’t buy my lame excuse. I’m hooked. I’m writing today to confess that my obsession has taken a turn for the worse.

A new season of Survivor and a new season of the Amazing Race have both started and I’ve not watched a single minute. Why not? Have I been cured? Not a chance. I’ve been too busy watching the most incredible reality show play out on the “news” channels. I don’t have a editorial team packaging the footage from each week’s activities on the “island” into a one-hour show for me. So I have to do it myself. I have to watch CNN, FOX, MSNBC, the Comedy Channel, and Saturday Night Live and make my own editorial decisions. The night I caught myself combing through hits I found after searching “Levi” and “Wassila” on Facebook, before we knew the identity of the real Levi from Wassila, I knew I was hooked on a whole new kind of reality television. (By the way, I think I saw the real Levi’s page before it was pulled off Facebook, but I didn’t pay much attention to it as I was distracted by the “wrong” Levi…)

The cast of characters is perfect for a real reality show, balanced with racial, gender, and age diversity. There is eye candy—personality—and enough back-stabbing-game-play to make a reality show producer drool.

I can look at poll numbers and read the New York Times, and appear to be doing something useful. Or I can read every blog I can find from Alaska and twenty or more comments about an op-ed in the Wall Street Journal, comments written by folks who don’t know any more about any of this than I do, and know I’m just getting my fix.

It really is a terrific show. I wonder if I’ll be able to watch Survivor and the Amazing Race again after Nov. 4? Or will they just seem lame in comparison?  Especially since I'm on the "jury" for this show.  I have a vote.

Fact Check

Okay, so Dave still gets credit for going to camp with Alex.  However, when I picked up Alex at school the next day, he told me that Daddy didn't stay at camp.  After everyone went to bed "Daddy went back to the office."  I thought I'd better check this one out.  Turns out that Dave was needed at a business meeting the next day in Indiana, so after lights out in the cabin, and after being sure there was enough adult supervision in his cabin (there were two "extra" men on the trip), Dave drove to Indy, stayed in a Super8, and went to his meeting.  

Funny, he never mentioned any of this to me???   Is there a serious communication problem in our marriage.  Please don't answer that.... 

At least he didn't stay in a nice hotel.  

He still had a better than average dinner waiting when he got home, because I'm just a nice person--and I'd already thawed the meat...