Tuesday, July 19, 2011

Strap In!

Have you ever stopped in the middle of doing the 5784th thing for the week and thought "I want off the ride now!" I mean, it's not like you don't want back on, it's just a nice break to sit on the bench and have a shaved ice or an $8.00 Pepsi.  Then back to the nausea inducing pace, for sure.  Because that bench gets boring, and it's hot just sitting there without the whooshing wind just blowing your hair back on that exciting ride.  But when the ride gets scary, overwhelming, and stressful; I know I want a break.  You probably would too.

Right now, I'm kind of there.  I want to sit down and leisurely have a cool refreshing break.  Much like any ride that's already started, there's no way off until it's over.  So I am just going to throw my hands up and scream, which should be interesting if you see me around town, just wave.  There is a lot going on right now and the most anxiety inducing of all of them is a cardiology appointment for Squish.  He had a flow murmur and the doctor wants to see if it's closed on it's own.  If it hasn't there could be a heart surgery on the table.  For the sake of my sanity and the feelings of everyone I know, let's hope this isn't the case.  For that would be like that ride going off the tracks and plummeting straight into Hell for me.

Yes, I am aware that this surgery is common.  Yes, Squish is a freakin' rock star.  I know it would be temporary recovery.  Amid all the rational thought and reason there is this... I'm scared.  I don't want my sweet baby boy to have another surgery.  I don't know if I could handle handing my son over to yet another anesthesiologist as I kiss him goodbye and tremble with worry over the million things that could possibly go wrong.  Watching him wake up, swollen and groggy, is no picnic either.  But these things are nothing compared to him howling in pain when he's awake and whimpering pitifully in his sleep.  He hasn't slept well since his shunt revision.  He fights falling asleep and wakes up more during the night.  Is it related?  Probably not.  Does it make me wonder if he's afraid of what will happen to him if he falls asleep?  Sometimes.

In the end, it will work out.  This ride... life... will hit the bumps and smooth straight paths, and in the middle of the loop da loops somewhere you can close your eyes for a second and know that when it does end, you'll want to go again.  It's getting to the top of the hill, that clank, clank, clank of being pulled up, that gives you long enough to worry.  

Saturday, July 16, 2011

An Ugly Place

The internet can be a really ugly place.  Most of the time for me, it's for research, friends, meeting people, and sharing experiences.  Ok, I admit there is also a piece there for time wasting funny sites and games, but mostly I use the internet constructively.  So when a Mom I know from a support group was upset at the treatment her child received when he attempted to enter a store using his walker at a business near her, many of the group members were upset in turn.

A news station local to this person picked up the story and ran it on the news and their website.  Websites are open to comments.  Sadly, a lot of these comments were either intentionally mean or really ignorant.  When I voiced my opinions, a person claiming to be a relative of the business owner actually blamed me for my son's Spina Bifida, saying that according to other sites I have, I drank and did drugs and it was probably an unplanned pregnancy.  While that is certainly not true, I couldn't believe someone I don't even know could be so upset by my opposing opinions on the internet that they would lash out so personally.

It seemed impossible to me that people were getting so vicious regarding what I see as a clear cut issue and regarding a child.  How can people NOT understand this is discrimination?  My point of view is up close and personal so I took a step back... am I being overly sensitive about it?  The conclusion I came to is that no, I'm not.  ADA guidelines require businesses to be accessible to people with disabilities, it's Federal Law.

Then I realized that I'll be facing this sort of attitude on my son's behalf for a long time, but he'll face it for the rest of his life.  I'm profoundly saddened at the thought.  He's a sweet, lovable baby right now and with a lot of work and a little luck, I hope to see him grow into a bright young man of good character.  But there will always be people who will think of him as "less than" a person.  Those people are wrong, their attitudes stink, and a little education, if they are willing, would go a long way.  That won't always be an option, I understand that.  It's unfortunate that so many are comfortable with their closed minds and ignorance.

While the experience has led me to realize that anything can be taken out of context, some people are just jerks, and being open leaves you exposed to those jerks.  I'm thankful for the thick skin I'm developing, but I think I'll lay off the comment boards for news stories as I've found that the loudest voices there are the ones with the most tightly shut minds.