Wednesday, May 11, 2016

That New Meningitis Vaccine: Raising A Son With Special Needs

They didn't think it was Meningitis. For Meningitis is so rare. Plus he already had a Seizure Disorder so that's what this was. He just lay there in the hospital bed becoming more and more non-responsive. Finally, my Mother-In-Law Doctor pulled the million dollar diagnoses out of the bag and suggested perhaps he had Bacterial Meningitis.  But by the time they got him into the procedure room to do a spinal tap, the test for Meningitis, he was falling into septic shock.  They called us into said room to say goodbye while they continued the procedure. I looked down on myself sitting there, knees pulled into my chest, shaking, while my little sweet 2 year old son slipped away.

And that type of drama continued for another week as that fighter son of ours lay in a coma for over 7 days. No one dared speak the words "critical condition," but we never wanted to leave his side in case...I told myself then, it was in case he woke up.  But it was equally for the other scenario...in case he died.

We are all lucky and blessed for he, our Willie,  lived. He is 23 now.  I write this blog about him. He is both my inspiration and my bondage.  For Willie developed profound Special Needs from his bout with Bacterial Meningitis.  Those Special Needs mean he will never drive, marry, or have children. He also cannot be left alone in public for he could either go with a stranger, get hit by a car, or do something socially disastrous.  Willie just stopped wetting the bed at the age of 23. He cannot do any simple math. He can barely write. His dream is to be an electric guitar musician, like Slash from Guns and Roses. Meningitis took that dream away and so many others.

Read my Blog for all of the most spectacular, fabulous traits and gifts Willie has brought our family. But when my second son was born, the Meningitis Vaccine was new, and you can bet I was first in line.  Just the other day at the Pediatricians' office, I asked if my 13 year old could get the new Meningitis Vaccine and unfortunately she has to wait until she is 16.

Get your children vaccinated. The new Meningitis vaccine is a gift. Information about that Vaccine can be found here:  http://www.meningitis.org/menb-vaccine. For Willie is one of the lucky ones. He survived Meningitis.  Most do not.

Saturday, May 7, 2016

That Leather Jacket: Raising A Son With Special Needs

Willie has been mad, sad, frustrated, difficult to be around, hard to help, worrisome, and I could go on.  It's been a couple years now like this. But he is coming out if it.  Just this week, he was happy, light, fun, pleasant, easy to talk to, a pleasure to be with. This is a welcome change.

As he walked into Rockrose House in that stunning new, black, leather jacket, I could feel his lightness. I know that jacket isn't why he is happier. But it sure does represent that beacon of hope we are always on the lookout for.

If you read my blog regularly, you know that Willie loves costumes.  They help him define himself. They help him come to accept his many faceted moods and behaviors.  They are almost like a shield or a blanket that protects that tender little boy that is still so prominent inside our Willie.

Throughout the years, we have had to help Willie find socially acceptable costumes.  Truth is that a 190 pound, 6 foot tall man/boy walking around in a Batman costume is just too scary for today's world.  But a leather jacket, with all the frills, is OK.

Willie has been talking about this leather jacket for years.  But because he is more even and patient now, he actually could help me pick it out on the many, many Internet sites we scoured last time he was home.  In the past, his irritability would have prevented him from even being able to sit with me through this process.  But I pushed him, as I knew I could, to help me find the one that represented the right image of himself.  It took a while; over 20 minutes.  And when we found the one he agreed to, I could tell it would be important.

So the awesome leather jacket came to him through the mail.  And I heard he was liking and wearing it.  But when he walked through that door, I wasn't expecting that. There Willie stood, with a very cool leather jacket on, with some faded jeans, and he just was happy.  You could feel it across the room.  And he stayed that way for the next 3 hours of our time together.  I savored every minute as I wafted the fabulous new leather smell coming from my son.

Leather pants next on the agenda...