Thursday, January 30, 2014



You will soon realize that this post has nothing to do with fish or stew. It’s just a dumb title that popped into my addled brain a bit ago.   Oh, well wait.  We did actually have pork roast last night, which I think qualifies as a stew because I always add too much water.  And well, I do have an aquarium full of darling little goldfish.  You know, goldfish live a surprisingly long life when you have a large enough tank.  Yes they do.  So I guess I just lied there.  This post has a very insignificant relation to both fish and stew. 

But now that I’ve completely wobble off the mark, let me attempt to drag my ADD brain back to the original thought behind my desire to write tonight.  Did you see what I did there?  I rhymed.  Ha.  I’m a poet.  No, not really.  Okay, now I really am going to get back to the true post subject.  Tonight’s subject is my little darling, James.  I know.  You cannot believe that I have something to write about James.  Well, I do.  And here I go.  You all know that my darling little James has Trisomy 21, Down syndrome in lay terms.  And along with having Down syndrome comes a plethora of unfortunate physical issues, learning challenges and in many cases, an abundance of medical maladies.   By the time their children reach just a few years old, many parents of kids who have DS know all about these lovely challenges, and are prepared ( or so they think ) to face them as they come.  By this age, many parents (I won’t say all, because not all do) of kiddos with DS have toughened up, developed a thick skin, if you will.   My skin grew so thick that Dwayne Johnson could throw a javelin at me and it most likely would explode into sawdust on contact.   (We also tend to develop a really sarcastic and mildly inappropriate sense of humor.  I didn’t get that though).   That is not to say that there are not days when I go into my bedroom, walk into the closet, shut the door and bawl my eyes out.  I do.  I do it plenty.  But I do have much more hutzpah and gumption now than I did before James was born.  I also am the proud owner of more medical knowledge than I EVER wanted to know.  I’m frequently asked by James’s physicians if I am a nurse.  I always laugh and either reply with 1. No, but I probably should be.  2. No, I’m just one of those parents that makes it a point of researching everything to do with James’s health. 3. Have you seen James’s medical charts? Volumes 1, 2 and 3?  4. I watched a lot of General Hospital and  ER in the 90’s or 5. What? Can’t every parent recite Gray’s Anatomy, cover to cover, from memory?   But, back to James.  The list of medical issues that James has dealt with in this short 14 years is astronomical, at least in my mind.  And I know that he is still way better off medically than many of my friend’s children, so I try not to complain.  That being said, there does come a point when every parent loses it for a bit.  Special needs parents are no exception and in fact they probably lose it more often than typical parents.  You just might not see it from the outside of their body.  That thick skin tends to hold it in better.   

Now you probably think I’m about to say I lost it recently.  No.  I didn’t.  But it’s coming.  I can feel it scratching against the inside of that thick skin.  There is just too much.  And I rarely use the word “fair”, because I’m a big proponent of ‘Life’s not fair’.  This, however; is the one instance where I think the term ‘It’s not fair’ is more than acceptable and appropriate.  Kids with disabilities and the ridiculous amount of crap that they have to go though.  It’s ludicrous.  And despite that fact that spell check demanded that I capitalize that, I’m not talking about the rapper.  I’m talking about not being fair to our kids.  James has had 18 surgeries in his 14 years.  His first surgery was at 6 months and his most recent surgery was last month. 

Last month’s surgery is the one that is causing the scratchy feeling inside my skin.  That freak-out, melt-down, screaming, cursing, throwing things, hissy fit that is trying to get through my skin.  Believe it or not it was a very minor surgery, all things considered.  It’s not like it was another open heart surgery, although I did find out last October that he has not only the original leak from the previous surgery, but now a brand new leak in another part of the heart and will be needed another heart surgery,  sometime in the hopefully distant future.  And it’s not another dental surgery, although he does have a major dental surgery tentatively scheduled for Spring Break, which promises to be very unpleasant and painful according to his dental surgeon.  And it’s not another gut wrenching gastrointestinal surgery, but he is supposed to have another one of those this summer.  No, none of those biggies.  This surgery was to put tubes in his ear drums, for the 8th time, and to remove some large globs of scar tissue from his ear canal.  All in all, very minor stuff and the surgery went well.  So here’s the kicker- the surgery was to correct some pretty moderate to severe hearing loss that had become evident in the last several months.  If I stood directly behind James and spoke to him, he didn’t even turn around.  I had to get in front of him and speak so that he could see my mouth before he could understand me.  His audiologist reported that she believed removing the scar tissue and putting another set of tubes in would improve his hearing significantly.  So we scheduled and surgeried again.  (I know that’s not a word, but I’m a woman on the edge here, so let’s agree that it should be a word, especially in my circle of Special Needs Mamas)  He had quite a bit of bleeding and discharge after his surgery, but when cutting out so much gunk, who wouldn’t bleed?  Then it got infected while we were 9 hours away, visiting my parents for Christmas.  In all this time, his hearing never appeared to improve.  In fact, it became much worse.  Now I not only have to make face to face contact with him when talking, but I have to shout as well.  I’m essentially shouting into his face.  I just have to throw the BS flag here.  How is this fair?????  Really.  No, Really.  Is it not enough that he was born with a significant cognitive disability?  Is it not enough that he is also obviously physically different from his peers?  Is it not enough that he has serious social challenges to being accepted by society and just simply fitting in?  Is it not enough that his peers don’t come over for sleep overs, that he rarely gets invited to parties, that his best friend is his mom?  Is it not enough that he has horrible, life altering colitis, which has no cure and no successful treatment?   Well let’s add in 18 surgeries in 14 years.  Is that enough?  Apparently not.  Because now he is losing his hearing and I’m quite sure that it still won’t be enough.  It’s not fair that my baby has to suffer so much.  So the whole unfairness of it all is clawing relentlessly at my sanity saving thick skin.  I know it coming.  I know that any time now, running to the closet for a little cry won’t be enough.

 No, I’ll have a major meltdown soon that will make Britney Spears’ head shaving frenzy look like a toddler crying for her teddy bear.  It’s happened before, many times.  Fortunately only once in public, in the parking garage at UCLA Medical Center at 5:30 in the morning on January 10, 2001, and the only witnesses were relatives whom are all afraid to mentally relive it.  I know it’s coming.  Once I may or may not have went to the dollar store and bought $30 worth of ugly glass and ceramic figurines and dishes.  I then, may or may not have, come home, went into the backyard while all the kids were at school and smashed them all with one of the kid’s little tee-ball bats.  I may have felt better.  Then I may have had to clean it up.   

I hope that I won’t shave my head though.  I’m not one of those people who would look beautiful bald. No, I would look like a dude if I were bald.  An ugly dude.