Friday, September 26, 2014

Smith-Magenis Research Foundation 2014

Long time no blog. I'm still here. And I might just tell you what I've been up to soon. But in the meantime...

Tuesday, August 12, 2014

Hair and anxiety. Anxiety and hair.

For me, mental health has been an important consideration in dealing with the stress that comes with raising a special needs child. And while I know that physical health is connected to mental health, even when I was in my best shape - a good weight, exercising regularly, and avoiding alcohol - my mental health was lacking (all I have to do is look 4 years back in my blog, and I can see that). Even counselling didn't fix it. It wasn't until my doctor put me on an SSRI a year ago that I started feeling okay again.

So that's about 4 years of struggling with anxiety and mild depression. It sneaks up on you gradually. For me, it started with physical symptoms. I developed contact dermatitis. Then I got shingles. Then other skin issues. Then my heart started to race for no reason. Then I developed a breathing issue where I could never get a satisfying breath. It got so bad I had to stop running or riding my bike. All the tests came back normal. It was my version of hell.

It was right around that time that my mind started going to bad places. Where every ache and pain was a sign that I was dying. I would lay away at night, scared to fall asleep, because I thought that I wouldn't wake up.

I was miserable. It was horrible. I hated it. And it was very hard to describe to anyone. So mostly, I kept it to myself, but I knew it changed who I was when I was around people.

I knew that my thoughts were ridiculous, but I could not shake them. Counselling helped with that and frankly, sheer determination. Determination not to let my mind go where I did not want it to go. I eventually - after a couple years - got my thoughts reasonable again, but my physical symptoms persisted. Even if I was able to stop my thoughts from going down a rabbit hole, my body went there. And there I was, heart racing and lungs not cooperating, unable to control it.

Then came SSRI's and now, those symptoms don't come back. Unless I forget to take my meds. Like I did a few weeks ago. It was horrible, it felt like I was going to die. But I didn't. I'm still here.

So, that's the background to my little story. My story about how sometimes my mind still goes to those dark, panicky places. And how I have to be so vigilant not to let myself go there.


It's a story about my hair, probably my favourite feature about myself. Ya, it gets greasy too fast and can go flat. But the colour is good and it cooperates with me and I like it. My skin is red and blotchy and acne prone. My body is flabby and out of shape. But my hair, well it doesn't matter what state of health I'm in, my hair has always been there for me. Which is why, when something seemed to go wrong with my hair, I panicked.

You see, it had gotten prematurely greasy after I'd swam in a lake. That's weird, I thought, but traveling and lake water will do that too you.

So, after I had a shower and blow-dried my hair and my hair was greasier than it had been before I washed it, I started to consider worst case scenarios.

Enter rabbit hole.

Suddenly, in my mind, I had an endocrine problem. And my hair was never going to be nice again. Something was wrong with ME!!!!

Maybe. Maybe I'd accidentally put lotion in my hair instead of conditioner. We were in a hotel after all and all the bottles look the same. No, pretty sure it wasn't that. Maybe it was the type of product in the hotel. No, no it couldn't be that, I'd used it before.

It was the strangest thing. I worried about it all day.

We got home that day and after we'd unpacked the car and everyone seemed settled, I went up to shower. Two showers in one day. Well... I had to know. Was there something about the product I'd used? Or was there something wrong with me?

I washed my hair three times. I washed my face with soap. I had to get all the grease away from me.

And then I blow-dried it again. My hair was much better, but still, a little on the greasy side. And that's when it dawned on me.

My brush. The brush I used when I blow-dry my hair. It had been in my toiletry bag and some oil had spilled in my toiletry bag. There was oil on my brush. It explained everything.

My life was okay again. I had my hair back.


Anxiety can do that to you. Take your mind to places that don't make sense. Make you skip those logical thoughts that explain things and keep you sane. I can mostly avoid those rabbit holes now, but sometimes they come back, unbidden.

That's when I'm thankful for my meds that keep my body from joining my mind, which goes a long way to helping me think logically again.

Any hey, my hair is okay. At least there's that.

Saturday, August 9, 2014

St. Louis

Every two years or so, PRISMS has a conference about Smith-Magenis Syndrome.

This year it was in St. Louis and I got to go. Brian, Finleigh and I flew nearly across the continent and had the privilege of meeting many really great people. And learning some helpful stuff.  And getting my fill of hope.

This was the first time I'd met SMS'ers older than Finleigh and it was good. What wonderful, special people they were, those adult SMS'ers. They looked younger to me than they were. But they were engaging and fun and joked around with us. Conversation flowed easy. I laughed. A lot.

I thought to myself, if Finleigh turns out like that, I will be happy. Of course, they were still disabled. None of them were able to live on their own. And I didn't see their low times, which I know they still have. But still, it was good.

Finleigh did pretty well. We weathered a few lengthy tantrums both in the hotel hallways and in our room. She also dumped her lunch over a couple times, including full glasses of liquid. That was fun. But she also went to the kid care like a champ and had a lot of fun. It made it so that we could sit in the sessions with no worries and actually learn.

Or try to learn, anyways. A couple times, I felt discouraged hearing instruction from the front that was supposed to work. That we had tried and that didn't work.

Crap. Does that mean we have to try it again? Did we do it wrong? What the hell are we supposed to do???

So, part of my take home was frustration. I knew going that there is no magic pill. No magic strategy. But part of me, deep down, had hoped. But there isn't. Nothing with SMS is guaranteed.

I learned so many other things, but I won't bore you with them. Instead, I will just say that I belong to the most beautiful community I could imagine and am proud to be part of it. The parents there? Incredible people. The organizers of the conference (also parents of SMSers)? Warm, inviting, caring. There was a feeling of comfort for me there. Like I truly did belong. We all share a bond. It's not a bond I would wish on anyone, but since we share it? I will hold on tight and cherish it.

Now we are home and I have a list of things to implement. Most of which will wait until fall when our life normalizes again. If I have the energy to do it. But I must. If things are going to get better, then I must at least try.

Saturday, July 12, 2014


"Mommy, I have more cereal?"

"Sure honey."

Mommy pours more Rice Krispies into Finleigh's bowl.

Dump. Bowl is overturned.


I don't know how I still fall for this. I usually say no, but my brain turned off today, and I poured her more cereal.

Stupid, stupid, stupid.

Off Finleigh goes to let off some steam. I snap this picture.

Then comes the "cleaning up" of said cereal while I pretend not to watch.

Cereal is now all over floor and a seven year old is rolling around in said cereal. Yelling.

Seven year old is sent to her room while mommy cleans up mess.

I don't know how my sons are still asleep.

And... I have turned into a yeller. It seems about the only way I can snap her into action anymore. I don't like yelling. But I keep hearing it come out of my mouth.

Good morning.

Saturday, July 5, 2014


I snapped the above picture awhile ago when my 9 year old son had some friends over.

Something about a bunch of boys shoes, left right in the doorway, that I find charming. I imagine them coming in as quick as they can, absorbed in their play yet taking time to take off their shoes. But not enough time to move them out of the way.

Oh, to be a child again.