You know how you wake up at 4:00am with a raging sinus headache, then realize that your daughter is all out of school shirts, and right after that she tells you that all of her gym shorts are too small, and your son won't get out of bed even after you turn on his disco ball and tell him that he's missing the party, then you go to work where your boss has to do everything for you because your head hurts so bad that you can't even wear your glasses, then you go to Target to get some new sinus medicine and end up spending $60.00 because you had to buy your daughter some bigger gym shorts, and buy yourself some makeup remover and maybe a Twix bar, and then you go home and take the new sinus medicine only to realize that you just took NyQuil at 1:40 in the afternoon?

Yeah, me too.

Labels: Kids, Question of the Day, Ramblings

Since my son was born in May, 2002, I have had a lot of bad days.  Watching him get taken to surgery nine times, seeing catheters shoved into places that boys shouldn't have catheters shoved, watching him get stuck for IV's so many times that I've lost track and seeing him almost die twice will tend to make every day feel like a Monday.  A Monday when you realize that you're all out of coffee and you don't have any clean underwear.

There have been so many struggles that parents of a typical child can't even imagine.  And before someone comes along and tells me how fortunate I am that my son can walk and talk, I will say that I know we are lucky.  I have spent enough time around children in the hospital to know that things could be horrifically worse.

But, there have been struggles.  It took 13 months before tube-feeding wasn't an ever-looming threat and it was 18 months before he took his first step.  That was after weekly physical and occupational therapy appointments and more genetics tests than even the geneticists knew existed.

He is almost nine and he vomited while eating just yesterday.  He can't button his own pants.  We found out last week that he needs hearing aides.

As a parent, you fight through these situations.  You modify his surroundings, you buy him velcro shoes, you cut his bites into little pieces.  You, quite simply, adapt.

But, there are certain challenges where there is no fix.

My son is not only medically different from his peers, but also physically, emotionally, behaviorally and socially.  He is tiny, quirky and the most unique individual I have ever known.  Most adults "get him" and appreciate him for who he is.  Most kids, don't.

For the past six weeks, my son has been enrolled in a basketball clinic at his school.  This was more of a social exercise than an athletic one, as my almost nine year old weighs only 43 pounds.  He did, however, just move up from a 5T to a 6 Slim, so he has that going for him.  He'll be out of that negative 3rd percentile before we know it!

Over the last month, my boy learned to dribble and bounce-pass and he learned to play one heck of a man-to-man defense.  He had fun.  They ate pizza after today's scrimmage.  He tried his best.

He has no idea that I sat in the stands and cried this afternoon, because I watched every kid on the court look right through him when it came time to pass a teammate the ball.  My husband knew I was crying, as he sat stoically, but I told him that it was making me sad to watch and he replied, "I know.  It's awful."  If he was a woman, he would have totally needed a tissue too.

I can't fault the boys.  They're young and they wanted to win.  They were smart enough to know that my son couldn't make a basket.  Boys don't have the compassion that girls do.  No offense, fellas, but I'm going to have to generalize this time.  If my son was on the other side of the ball as a typical child, then he would have probably done the same thing.

But, he wasn't on the other side of the ball and he is not a typical child.  I watched him holding his hands in the air, waiting for a pass, for over an hour.  He got a chance to dribble twice, when one of the parent volunteers TOLD the boys to pass it to him.  He loved those few, fleeting seconds.  I could see the pride in his face.

As a parent, you want your child to shine, not be ignored.  You want the world to see what you see; that inside the quirky kid is a funny, smart, gentle soul.  Okay, okay...he's ornery too, but everyone does see that.

It is so hard to have a child like mine, but it is also very special.  It is a joy to see him succeed and to go places I never thought possible.  To me, he is a gigantic force in the universe.

But, to the boys on the basketball court, he is but a speck.

Labels: Family Life, Kids, Prematurity, Ramblings, Socializing, Special Needs, Things I Would Change

Last night I attended my fourth of thirty-six boot camp classes for which I recently signed up.  Just thirty-two to go!

Every other session is devoted to strength training.  I almost threw up during my first one.  Last night was my second.

After I struggled with my barbell, wobbling it side to side during pulsing bench-presses (high five to my spotter), I told the instructor, "Hey, I didn't have this much weight last time."

Which is when I really realized that this wasn't my mom's Jazzercise class, when she replied without sympathy and said, "So?"

Labels: Boot Camp, Ramblings, Shameless Statements

I am not the healthiest person you will ever meet.  I have asthma, migraines, sinuses that drive me crazy from October to May, some strange auto-immune stuff going on and, on top of all of that, I don't sleep much.  I am a blast at parties!  Call me!

I'm halfway kidding, because I am a blast (I'm modest too), but one of the worst things about being sickly is that your friends have to deal with it.

Sure, last year's swine flu/pneumonia/suspected pulmonary embolism stopped my husband and his dad from leaving for a weekend trip and my mom was the one who rushed me to the emergency room when my doctor thought I was coming down with my SECOND case of viral meningitis, but it's different when you have to put a friend out.

Like the time when I got a concussion a couple of years ago and my husband was out of town or when I went on my annual girls' weekend and ended up with a migraine that made me so sick that I couldn't keep my anti-nausea meds down.  I'm sure that watching me get IV drugs wasn't on my friends' lists of things to do when they were away from their kids for a few days.

But, maybe all of this happens to me for a reason.  Maybe it's to show me that I have amazing friends, or to prove to the world that there really are good people who care about each other; or care for me...same difference.

In addition to being a creative outlet, a place where I have connected with other parents of children with medical issues, and being the board off of which I dove into a new line of work, blogging is a bonus because it has enlarged the group of people who would drive me to the hospital.

Photo courtesy of Mishelle Lane

Labels: Blissdom, Friends, Getting to Know Me, Insomnia, Photos, Tooting My Own Horn