Monday, March 21, 2016

This morning

We pull up to the school just as the bell is about to ring. Finleigh waves at her friends. One of the girls waves back and starts walking toward the car.

I've never seen this girl. I have no idea who she is.

Finleigh jumps out. I put her backpack on her back.

"Mommy, you walk with me?"

"I think you can go by yourself."

The little girl comes up to her. "Do you want to walk with me?"

"YA!" And she skips off, happily. The little girl reaches for her hand.

I stand, watching her run/skip/hop excitedly to the school. I feel the cool, almost spring air on my face as I smile.

I am happy. Life is good. My little one, despite all her challenges, is loved and accepted. A mother could not want much more than that.

Last Thursday, as I pick Finleigh up from school, a little boy puts his arm around Finleigh and tells me that she's his best friend.

Two months ago, at a birthday party of a friend, the birthday girl lets Finleigh open some of her presents because she knows how excited she is. No one else is allowed to help, not even her little sisters. Just Finn.

My husband reminded me this morning that it's three years today since we received Finleigh's diagnosis of Smith-Magenis Syndrome. Life is hard, yes. But it is also good.

Sunday, March 6, 2016

Rollercoaster

What  rollercoaster my life has become.

In many ways life is easier and I feel more in control of my life.

I've started my graphic design business (website still in progress) and I am deriving a great deal of satisfaction from my work. I love it. And I like feeling productive and seeing a final product - that lasts. Something concrete that will not be undone in 5 minutes. Something finished in a specific time period. A day. A week. A month. Not like child rearing, where one's success may not be truly seen until that child is well into adulthood.

Satisfaction. Immediate results. Success. I like that.

The husband hasn't been working overtime at all lately. It's been nice to have him home regularly. This way we share the load a lot more. Along with respite and help from my parents and friends, things don't feel so bad most of the time. Things feel good. And I can laugh at the goofy things Finleigh does. And when she defies me and refuses to do what I ask, I am able to just breathe and patiently wait for her to do what I ask. I have energy to clean the house. Cook decent meals. Volunteer in the community.

But it doesn't take much to take me back to that dark, frustrated, life draining feeling that I felt so often when she was younger. This is the first full day I've been home alone with her in awhile and any motivation or energy or joy that I've had lately is gone. Completely and utterly disappeared. I walk into a room that she's inhabited recently and I just walk out. Crestfallen. Feeling guilty that I'm leaving it a mess, but unable to muster enough energy to fix it.

My bedsheets, that I just washed yesterday, are now covered in hand cream that I had in my bedside table because I got complacent and let my guard down. And because I neglected to lock my bedroom door this morning when I went downstairs. It will probably stain, just like the lip balm she smeared on our bedding last week. The bedding was an expensive splurge because I loved it. I still love it... but it's worn and stained now. A perfect metaphor for life.

And so, when she came downstairs covered in lotion from my bedroom I took her to a towel and told her to wipe herself off. Then I went upstairs and cleaned up the mess, as much as I could since the laundry is currently in use. And then I put the lotion back in my ensuite that has to be locked from the outside to keep her out at night and locked my door.

I hate having to lock every single door in my house.

Hate. It.

A lot.

Now I'm sitting her sulking and wishing - just a little bit - for a normal life. I count my blessing and look at all the breakable things in my house that still exist. But still mourn that fact that I can't keep fucking lotion or lip balm in my bedside table.

It's the little things, I guess.


Tuesday, February 23, 2016

Hot Chocolate

Here's a post from my husband. He shared it on Facebook. Just another day in our SMS life.


It's time for a Smith-Magenis Syndrome snap-shot of the day. Literally! It looks like one of those funny pictures that explain why you don't want to have kids and, on the surface, that's exactly what it is. A little kid making a big mess. But there's more here than meets the eye. Finleigh is fiercely independent (a common SMS trait) and was trying to make herself some (cold) hot chocolate, made a huge mess, and was trying to clean it up with the broom when she called us in to help. 
Finleigh was unable, at 9 years old, to do either of these tasks on her own. (That's make the drink or clean it up. She made the mess and eventually called for help just fine) 
Notice the lack of table cloth? Finleigh bites holes in them (and the table too if you look closely). 
See the plastic sippy cup? She knocks over all cups without lids and breaks glass ones. She once bit a glass. And broke it. The ceramic mug would inevitably have been knocked over or broken if she'd managed to finish making the (cold) hot chocolate. 
The plastic plate? She likes to throw those and we got tired of buying new ones and cleaning up glass. And plastic hurts less when you're the target. On this day, I'd left her dinner on the table because she refused to come and eat with us. But I knew she'd get mad if it wasn't there when she came looking and a meltdown would ensue. So she ate cold food at around 7:30. Then she wanted the (cold) hot chocolate. 
That's her iPad on the table. With her short attention span, we have a hard time keeping her at the table and this helps her stay long enough for us to get through a meal. It's outfitted with the strongest case we could find for when it gets thrown against the wall or covered in hot chocolate powder. 
See the wall? Covered in a variety of food and beverages in addition to the marks/holes from her chair/iPad/dishes/body parts hitting it? 
The scratched up chairs are cheap, spray painted, cast offs because she'll ruin whatever we use so there's no point in buying better ones. 
Those clothes she's wearing? She changed into them, by herself, about an hour before. After urinating in her other ones. A rarer occurrence than it used to be besides the need for pull-ups at night. 
Lastly, there's Finleigh. With a cocktail of meds running through her system. On the floor. Having a meltdown. Wanting to help clean up. But not. But wanting to. But not. Covering her ear as she's done since she was a baby. I had to lie to her about what I was taking a picture of because if she thought it was of her, she would have lost her mind. 
Just a glimpse into our kind of normal.

Sunday, February 21, 2016

2.5 seconds of almost fame

In our small little Canadian life, being on the CBC news website for our province's capital city?  Pretty cool.

You can click below to see the write up they did as a follow up to the radio interview I posted about in my last post. Enjoy with us our 2.5 seconds of almost fame.

Fort McMurray girl's rare diagnosis a mixed blessing for parents

Thursday, February 18, 2016

#BeingDory


The SMS community has come together, lead by the Smith-Magenis Syndrome Research Foundation to see if Ellen Degeneres might just lend her fame and goodwill to our cause.

It's difficult, with such a small pool of people to garner enough momentum to get the attention of a person in such demand. Just go to her Facebook page. You'll see. People are writing requests to her literally every minute. That's thousands. Millions of people. All looking for Ellen's attention. All hoping she - being the kind person that she is - will shine her light on their want/need, just for a second.

Our group just needs the world to know about us. We need more people to recognize Smith-Magenis Syndrome. We need this so that undiagnosed people can become diagnosed. We need this because SMS is original and hard to deal with and parents need HELP and UNDERSTANDING from others. We need this because so much of the medical community has never heard of it, so approaching it medically isn't necessarily done in the most effective way. We need this because there are ways to help our children with flipped melatonin production to sleep - but not if you don't know that your child has a flipped melatonin cycle. We need this because research can be done to help those with SMS and their families. We see outcomes for other genetic disorders being improved greatly with new genetic therapies. We need this for our kids too.

Thus the Research Foundation.

Thus the push to get Ellen's attention.

We've been lucky in that our paediatrician was familiar with SMS once Finn was diagnosed. So she's willing to try the off label, out-of-the box medications that work for Finn. We've been lucky because we've had amazing people working with Finleigh, who have taken the time to understand how to deal with Finleigh and help her be her best. We've been lucky because we're surrounded by family that help and live in a place that support many of the things we need. We've been lucky because Finleigh hasn't had many of the very difficult medical issues that others have. SMS'ers have died from Meningitis because their illness wasn't caught soon enough. SMS'ers have heart and kidney issues that threaten their lives. SMS'ers are in and out of the hospital because of issues that no one can seem to figure out. They go to the hospital, get stabilized and are then sent home.

Those things make Finleigh's over-the-top behaviours seem like nothing. They're not nothing... but they do put things in perspective.

So, the campaign is #BeingDory. The movie Finding Dory is coming out soon. And all of us... like Dory in Finding Nemo... just keep swimming. We keep swimming despite the smearing of bodily fluids all over our homes. We keep swimming despite the damage to our things after an especially bad meltdown. We keep swimming despite multiple hospital visits. We keep swimming despite schools and doctors that just don't get it.

We keep swimming. And we hope that Ellen sees that and helps us.

But even if she doesn't, we'll keep swimming. And we'll keep depending on each other. And we'll keep trying. Because what other choice to we have?

Brian and I were lucky enough to make it on CBC Edmonton Radio yesterday to talk about SMS. Our small contribution to the cause. Here's the link to it. The interview starts at the 11:10 mark.

Listen here

Friends, just keep swimming.