Wednesday, February 20, 2013

Long Time Gone

I haven't written here in over a year. That's kind of sad and kind of wonderful. I started this blog to write about our journey with Tourette's. That was derailed by me using this blog as an outlet as I struggled through my divorce and becoming a very shaky single mom.

So the sadness is, I used to write here every day. Then weekly, monthly, never. I miss the community a few of us built here.

The wonderful is, I needed this to work out fears and experiences with Tourette's that I just new would increase and rule my life. It has disappeared and is only in my life when it comes from external sources. I needed this to work through heart break, incredible emotional pain and deep deep depression. You all were my social checkpoint. I had trouble feeling like relating in person. Now, some of you are still connected to me on Facebook, through email (remember email?!), or in real life. And the divorce...well there's a story for you.

Let's catch up a bit.

In 2010, I think I mentioned The Ex moved back from Boston. While happy for my boys, I certainly didn't need someone messing up my routine or trying to insert himself into my parenting. It wasn't an easy adjustment. Having him 3000 miles away gave me a huge buffer zone. I didn't have to deal with him. Suddenly, BOOM! I had to deal with him. And all the memories and anger and resentment that came with that.

I have ridden the roller coaster of TotallyOverIt or HellHathNoFury. It has slowly gone from insane highs and lows to more even keeled. The Ex and I started getting along well and hanging out a lot.

2011 & 2012, more of the same. I worked. I did the mom thing. The Ex helped out quite a lot. And I tell yah, after 3 yrs of asking for help from my awesome mom or amazing neighbors or rockin' church family, it was good to have help from the person that SHOULD help.

My awesome church had a huge transition. After our head pastors moved to CA, we steadily began losing members. Small to begin with, it didn't take much to take the wind out of our sails. We got a church adviser that helped the remaining small group of families really take personal inventory and step up to the plate. It was a year of huge growth. And growth always comes with pain. But the growth was the main thing.

The Ex became our regular worship drummer. He also became a full believer! Something I prayed for for decades, never thinking I'd get to witness it. I stayed out of it because he wasn't my husband, we had too much history that involved religious differences. I wanted this all to be between him, God and whomever God sent to minister to him. And boy did God rock this! When God shows up for you personally? It's pretty difficult to discount him. But watching him seek God, question everything but with sincerity, not belligerence, watching him have real experience with the Presence of God...THAT was an honor.

We have found another amazing church. And this one, we both chose. The old church had been him coming into MY territory. As accepted as he was, it still had that feel for us. This church is OUR church. Which is very cool. He's on the worship team again. I'm serving all over the place. Currently, I am gearing up to facilitate another Dave Ramsey Financial Peace University class. I'm helping with the food service. I'm helping with greeting, recycling, anything they need.

And I'm dating. After over 6 years of friends and family, I've just recently had about 4 dates with the same dude in about 2 weeks. And it's pretty cool.

A few people know who it is. The rest don't really need to know. He's private and I sure don't want to muck it up.

BigBro and LittleBro are doing amazingly well. BigBro will be 13 this summer. His Tourette's is gone and he is a huge testament to God's healing and grace. We prayed for total healing and left room in our minds for the possibility of God leaving it for some other purpose. But it's gone. BigBro's prayers have been so sincere and lacking the doubt and walls us adults bring to prayer. I think God gave him an early testimony. So I will always listen to and work with my doctors. But a human diagnosis will never have the last word for us. I leave that to God.

LilBro just turned 9. He is just as intelligent as his older brother but not as flashy. He is doing so well in school. His teachers over the last few years have recognized that he had some leadership qualities behind that shy little exterior. This year, he has been given some really great leadership tasks by his teacher. He rose to the occasion each time. He powered through the fear and did it. His confidence has soared.

So much has happened since my last posting in Nov 2011. Most of it incidental in this context. But if seeing my ex accept God/Jesus his life and heart is all I ever get? I'm totally ok with that!

I'll catch you up on other stuff soon. And I'll see if I can convince LilBro to let me post his current picture here. He is old enough where he gets to approve or veto any pic I post of him!


Sarakastic said...

I have missed your blog posts but am glad that things are going so awesome for you!

LEstes65 said...

Princess Sarakastic, I adore you!!!

Allie said...

Wonderful to hear what God has been doing in your life (happyface)

Mike said...

Hi, I just stumbled upon your blog last night and read through some of your old posts. It sounds like your son was diagnosed with TS in 2006, but showed a remarkable improvement a year later. Did your doctors adjust the diagnosis to chronic/transient tics? Oh, btw, great to hear your son is doing so much better!

My son is 5 and his tics started on October of last year. After a prett bad sinus infection and flu, he developed some severe eye rolling tics. This was really scary because we had no idea what was causing it and we immediately jumped to the worst case scenario of it being caused by a brain tumor. After a ton of tests and visits to several neurologist, we got an initial diagnosis of chronic tics. The tics lasted for about 2.5 months and then tailed off to almost nothing. Then my son got a strep infection, which started things up again. This time we saw eye rolling, movements with his head like he is scanning the room, a phonic tic that sounds like mmm ... Mmm constantly (especially when he is eating or watching tv), a knee knocking tic that actually causes bruising and discomfort, and a host of other things that we aren't sure are tics or normal 5 year old behaviors.

Like your son, mine is extremely intelligent. He loves deeply, like to figure out how everything works, gets along well with kids his age and doesn't let his tics hold him back. Did any of your doctors ever suggest medication? The first neurologist we saw, diagnosed chronic tics and prescribed clonidine. We put my son on it for three days, but took him off it when we saw some cognitive changes (ie memory loss) and extreme fatigue. We're also trying a gluten and casein free diet, a good multi vitamin, and a couple of probiotics. Im not sure any of this is helping, but we're trying to boost his immune system and limit the stress to his body that seem to worsen the tics.

Did you notice anything "off" about your son prior to the initial flare up? How long did his tics last? At what age was he able to really verbalized how the tics made him feel? Did you use any medications? Did your son ever show signs of rage and if so, what were some things you to did to manage it or at least calm him down?

I know Im full of questions, but we're only officially 9 months into this thing (really 2 years if you factor the stuff we saw prior to the diagnosis) and are still trying to figure out the best way to handle this disorder. It's just really hard to watch and especially hard to hear your son say "why to my eyes do this, it's so annoying" and "my brain is so stupid". Anyway, i should probably get back to work and stop my rambling. Im glad things are going well for PB and hope ours takes the same trajectory.