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August 30, 2008

When it rains, it pours

Nightmares have been a nightly occurrence for me these last few weeks. The message of the dream is always the same but the scenario changes each night.

I'm always struggling in these nightmares; trying to climb slippery stairs to reach my kids or failing to save my toddler from a watery grave. If I'm not trying to save my children from harm then I'm struggling to not drown in deep water.

Obviously these dreams signify that I'm struggling and going under emotionally. My mind does this to me whenever I'm suppressing a difficult emotion to let me know I'm not in as much control as I think.

I'm very good at covering up my depression. I refuse to be like my mother who took to her bed for days during her dark moods. I feel weak when I succumb to depression so I forge ahead with a smile on my face until my mind forces me to deal.

I was forced to deal last night while researching Tourettes Syndrome (TS) for this post.

A few weeks ago I wrote about my concern that Isabelle and Connor also have TS and it has continued to weigh heavy on my mind. I've been stuffing that mommy gut feeling with food in hopes that it would cover it up. But as I read blog after blog about other families dealing with TS it became harder and harder to deny my mommy gut.

Not only was I relating to the posts I read in regards to Madeline but a lot of it also applied to Isabelle and Connor.

It was hard to not recognize Isabelle when I read about "an aversion to their own saliva which involves feeling the need to spit all the time" or the examples of rage attacks. She recently shared with me her need to spit and has had rage attacks since she was a toddler.

I recognized Connor in a post about "visuomotor integration deficits resulting in poor handwriting may be associated with Tourettes". This has been an issue for Madeline and now that he's in first grade it has become apparent just how difficult writing is for him also.

When I sat back and looked at the whole picture it suddenly became very clear that Isabelle and Connor's sensory integration and processing issues, difficulty with spelling, and the tics that I've recently noticed are all on the Tourettes spectrum.

It's time to face the fact that three of my children have TS.

And I'm scared.

And so very sad.

I don't want their lives to be so hard. I not only want them to accept themselves but to also be accepted which is going to be a challenge. I was saddened about how a Technorati search of Tourettes returned countless blogs referring to TS in a joking or derogatory manner.

I also ran across posts where TS sufferers were accused of being possessed by demons and another where an African American woman was greatly offended by a young girl with TS who would utter a derogatory word used to describe someone with dark skin. She felt the child was faking and that bad parenting caused her to repeat the word.

I know the word is offensive but where is the tolerance for someone who has no control over their coprolalia? If you want tolerance then you also need to be tolerant but I can't completely fault this blogger for her feelings since she obviously doesn't understand this aspect of the disorder.

This is what I'm up against. There is so much ignorance of Tourettes and I'm sick at the thought that the majority of the population will view my children as freaks.

At this point in my research I broke down and cried. My body shook and I had trouble catching my breath. I had needed this release for quite some time.

As I prayed and purged myself of my bottled up emotions it began to rain.

No, it poured.

And through my tears I laughed.

It hadn't rained in a long time.

I knew it was God crying with me, letting me know that it would be okay and that the sun will shine again.

When I woke up this morning the rain was gone and the sun was peeking through the clouds letting me know that it would be coming out soon.

And like the sun, I'm hiding behind the clouds. I need to be sad for awhile before I can come out shining again.

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Comments on When it rains, it pours »

August 30, 2008
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My welcomed unwelcome guest - Slacker-moms-r-us @ 10:23 am

[...] I think Connor and Isabelle have Tourette Syndrome. You can read more about it over at 5 Minutes For Special Needs. [...]

Deborah @ 10:53 am

I believe we all need our times to be sad. Thank you for your honesty, Kristie. I really prefer an honest post to a sugar-coated one. They help me more…

May @ 11:23 am

I can understand you sadness, it is a part of accepting that our children are not, and most likely, will never be accepted in the big picture of "normal" how ever one may define that. I hope soon you can peace in it and know that it doesn't mean their lives will be any different than they were yesterday , you will not love then any less now there is a name attached to their set of behaviors.

Luckily your children have been in a time where disabilities are lesser of a social stigma. My son , trached since he was 3 months old , goes out with us all the time and people rarely bat an eye at us – those who do simply don't garner my attention any more.

Years ago I met a wonderful guy online whom I became friends with who had Tourette's. He had girlfriends, moved in with roommates and went to collage for something crazy like bioengineering and astrophysics. He was so smart it sometimes hurt my head to talk too long to him , lol. Unfortunately I have lost touch with him but please try to see that while there is still much ignorance in the world about Tourette's ( as well as many other disabilities) that it is not a sentence to a lesser life by any means.

Kristie, my thoughts and prayers go out to you. I really cannot imagine what you must be going through. Do be gentle with yourself and give yourself some time to cry.

And as May said, at least we can be thankful that society is getting a bit better… and with sites like this, we will all help the world become a more accepting and understanding place.

Thank you so much for sharing your story. You are truly helping move our world forward in understanding.

abunslife @ 4:11 pm

Shit. shit. shit. Why? I was crying that night too…..It's just not fair. I'm so sorry. You are the BEST mommy for these children and YOU know that. No one else can raise them to be the best, self-confident children that they are already growing up to be. YOU and your HUSBAND can do it and they WILL succeed in life. hugs.

danette @ 5:22 pm

((Hugs)) I had similar feelings when we started to suspect that our youngest had autism. When our older boys were dx'd I was sad but more than that I was relieved – everything was so hard with them and finally we knew why. But with Bitty when I started to realize that he was not only showing signs of autism but regressing, I was surprised at how deep the grief I felt was. Give yourself time to work through those feelings, and as you say, the sun will come peeking back out.

August 31, 2008

Tammy and Parker @ 12:39 pm

Kristie,

I've been thinking about you and your post since I read it Friday night.

First of all, I believe you are on strong Mama.

But you need to take your time to be sad and totally ticked off at the Universe.

Thank you for sharing your thoughts and feelings with us. Thank you for raising our awareness.

hugs.

Kristie @ 8:07 pm

Thank you for your kind words, prayers, and comments. Your support does my soul good.

I'm feeling much better today. I spent the day enjoying all my kids wonderful qualities and it was wonderful.

September 1, 2008

chaotic joy @ 10:22 am

It's OK to be sad for a while. To grieve this new news because I know in the long run you will do what you need to do as you always have. You are a strong brave mama and I am praying for you.

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