Williams Syndrome Wednesday: A good day ain’t got no rain

by , on
Apr 30, 2015

almakisses

That Paul Simon knows some things about things.

“She said a good day ain’t got no rain. She said a bad day is when I lie in bed and I think of things that might have been.”

So one of my amazing sponsors gave some lovely kids books to The Auction for Alma. And one is called “Someday my Love” and it’s the story of a new mom and all the hopes and dreams she has for this baby girl.

Except she missed a few:

Like “Someday my love, I’ll hold you without all these tubes”

or “Someday, my love, I’ll hear you say Mama, and know the 2 year wait was worth it”

and “Someday, my love, we’ll go to a park that can accommodate your walker and you’ll play hide and seek with kids instead of stuffies”.

Plus “Someday, my love, you’ll have a friend”

And, not to give the book away,  “Someday, my love, when you’re hair is grey and I’m gone, maybe you’ll know, in your heart, I did the best I could. And hopefully it was enough.”

Yeah, the book doesn’t go like that. The baby arrives, and a page later smiles, then talks and runs and skips. The little girl rides a bike and has besties and then a beau. She has a little baby of her own that the storyteller gets to hold and love like her child all over again. And then the mom is gone at the end, but the girl has a college education and a family. She’s not alone.

There are no bumps in the road. No glitches. No bad days, boo hoos or why me’s.

I used to think that would be our someday before, you know, just before.

Now our somedays aren’t the kind that people write books about. They’re the kind that make people give the pity face, and the deep sighs when they hear about you.

i know this because I’ve been telling a lot of people about you these days.

But as I picked myself up this morning and dusted myself off, I recalled that our somedays aren’t yet written. And with the right amount of hard work and love and luck, our somedays could very well exceed my wildest dreams.

I really hope the person in the auction who gets the books has all the somedays they read inside. But, please know that  if you’re like me, and the somedays look a little different, there will be many, many good days that ain’t got no rain.

And nobody is gonna fault you one bit if every now and again, you lie in bed and think of things that might have been.

Williams Syndrome Wednesday: The Talk

by , on
Apr 23, 2015

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On this journey I’ve learned a few things. Ok, maybe a great number of things. But one of the most important things I’ve learned is that there are LOTS of pretty good days (even great days)…being a special needs parent isn’t all doom and gloom. But then, out of nowhere, when you least expect it, your heart breaks all over again.

This past weekend, the boy and I were out visiting local businesses looking for donations for The Auction for Alma. He remembers the auction from last year – we jumped into the bidding to secure the Lego set that had been in the house in the donation pile that he WAS NOT going to let go to another family. So bringing him on the walk seemed like a perfectly good idea.

Until he asked why?

“Why do we need to do an auction for Alma? Why can’t she ask for donations? What’s so special about Alma?”

And there it was. He knows there’s something about Alma.

He look up at me with those big old eyes and I didn’t quite know what to say. I got all welled up and took a deep breath and explained that when Alma was being created, all the pieces didn’t go quite in the right spots, like when you build a Lego set and miss a few pieces.

So she has a little trouble doing some of the things that other kids find really easy, like walking and talking, but otherwise, she’s just like everyone else.

Then he asked if that’s why she needs so many doctor’s appointments – something else I didn’t realize he’d noted – and I said “yes”.

And I had a little cry that I blamed on the wind. My heart broke over the need to have this conversation at all, and because there would be so many like it in the coming years. And that many of them would be far more complicated than this one.

The boy didn’t notice. He simply said “Oh, then I guess we’d better get a lot of donations so we can really help her out.” And then we kept walking and he jumped and skipped along.

I’ve learned that your heart breaks over and over again, at unexpected moments and in unexpected ways.

But when it heals, it’s a little bigger and a little stronger.

In the wake of every heartbreak there’s a little more room for courage and a little more room for determination and a little more room for love.

Williams Syndrome Wednesday: We become the parents our children need us to be

by , on
Apr 16, 2015

HangOnTight

I’ve recently been told I’ve really taken to this whole ‘advocacy thing’. Which I suppose is true, but doesn’t really say all that much about me. Other than that I am a parent. And that’s what parents do.

I’m quite certain that if you asked all the parents sitting at any given hockey rink at 6 am on any given Saturday, many wouldn’t have pictured themselves freezing their butts off 2-3 mornings a week. Ditto for the dad’s sitting at ballet recitals talking about turnout, mom’s debating the relative strengths and weaknesses of the Ninja who make up Sensei Wu’s team in Ninjago, or dog owner toodling around a park at 6:30am in the dark at -15 waiting while their fur-baby does their business.

I would never have guessed that I would be able to name every piece of heavy machinery at a construction site. But my son was a truck fanatic when he was two, and so I became a truck fanatic. It gave us something to talk about. It expanded his vocabulary. It was our thing, going to see the construction sites, chasing the garbage truck down the street. Sneaking behind the barriers of backhoes parked in the lane.

He needed someone to help him explore his passion for trucks and that someone was me.

My daughter is no different. She needs an expert in her syndrome. She needs someone to navigate the system to ensure she has all the services she can get to help her reach her full potential.

She needs someone to rage against a future that predicts that she will live in poverty, have an 83% chance of being sexually assaulted, but only a 34% chance of having paying employment.

Yep. Depressing right? It would be, if I didn’t believe it doesn’t have to be like that. If I didn’t believe the world can change…that things can change. That you can change.

I changed. How could I not?

My daughter needed me to become an advocate – for her and for every child like her.

So yeah, I really took to the advocacy thing. Just as this summer, when my boy joins his first team, I’ll really take to the Soccer Mom thing.

My #resumom just keeps growing. Champion of the construction site mom. Lego piece finder mom. Soccer Mom. Advocate mom. Speech therapist mom. PT mom. OT mom. System navigator mom. Williams Syndrome expert mom. World changing mom.

Or just mom. Just like every mom… or dad.

We all become the parents our children need us to be.

Williams Syndrome Wednesday: Permission to Let It Be

by , on
Apr 4, 2014

Sometimes it’s nice to hear someone say “Things are ok as they are.” This week’s dose of chillax came from the special feeding clinic that baby Obi now attends.

Feeding has been a huge struggle right from day one. We finally got her eating pureed baby food at about a year. We’ve been trying to increase textures but not having any luck.

And do you know what the experts said? Let her eat purees. Thicken them slowly over months and months. Stop pushing her to move ahead faster than she can.

It’s ok.

You know, it’s not ok for me sometimes. It’s not ok that all her friends are running and starting to talk and growing so big and she’s still sitting tall, hanging out, screaming from time to time and eating purees.

It’s not ok for me, but she is perfectly happy. She’s doing what she’s doing. She’s loving life.

You know what else they said?

It’s ok.

It’s ok that you’re disappointed that things aren’t going as you planned. It’s ok that you feel sad, jealous, frustrated…whatever you feel.

They also said she looks good, healthy, feeding well, eating in step with her current development.

So I’m gonna stop trying a million ways to get her to eat what she’s not developmentally ready to eat and I’m just gonna feed her what she likes. Pureed food, some puffs, some pasta stars, some mum mum crackers and I’m gonna cut myself some slack.

And I’m feeling OK about that.

Williams Syndrome Wednesday: 1 in 20,000 is the lonliest number

by , on
Mar 27, 2014

Yeah, I know, I’ve missed a few Wednesdays. I totally had ‘that thing’ happen. The one where you have something on your mind and you really want to say it – but it’s such a big friggin’ downer for you and everyone else that you don’t say it. And then, as it’s all you want to say, you can’t think of anything else to say, so you just say nothing.

Yep. I’ve said nothing these past weeks because I don’t want to actually commit these words to print “it’s just not the same”.

There, it’s out there now.

I have had a vast number of people remark about how the motherhood journey is a common experience (and if you’re one of them, I am SO not calling you out in particular) and the more I hear it from Moms – typical everyday Moms – the more isolated it has been making me feel.

Partially this is my fault as I tend to gloss over the sheer logistics of tending to Obi’s needs. I am also guilty of attempting to adopt a normalcy to her condition which then leaves people without a sense of how far from normal her first year has been and what that has meant to our family. Even as I’m typing I’m cringing at my own words – really, what is NORMAL anyway?

But, truth be told, as someone who parented a typical child before Obi came into our lives, having her is just not the same as a typical kid. The “hopes and fears”, the “good days and bad”, the “just trying to get by sleep deprived” and the “constant worry” aren’t the same.

I hope my child will speak. I fear my child won’t walk, or eat solids that aren’t pureed or every be invited to a birthday party not thrown by someone who is like family. On good days I have been able to get food into her, I have not missed an appointment, followup, received bad news or thought too much about her future. On good days we learn we don’t have to come back to a particular specialist for a year – unless we see any of a set of scary symptoms. On bad days we learn she isn’t seeing well, had flunked her hearing test again, her calcium levels are rising. On bad days we get referred to rule out potentially debilitating seizures, get the run around for therapy funding, realize we have no idea what the future holds for her. On bad days people ask what’s wrong with her, if she’s going to be ok, if she’s ‘healthy’, if she’ll ever walk or talk and I have to answer we hope so.

In 12 months she’s slept through the night 10 times. The three months before that, she didn’t wake up. The rest of the days she got between 3-5 hours of sleep between 8 pm and 8 am. We take turns.

With my typical child I worried about eating, sleep, development, if he should have screen time, if he was being spoiled, was he likeable. Now I worry about hearing, sight, mineral levels, blood pressure, muscle tone, tippy toes, W sitting. I worry that she will never eat a cheerio, that she will be bullied, abused, invisible. I worry that I won’t live long enough to take care of her as long as she needs care, that she’ll wind up in poverty somewhere, that, once her brother has a family of his own, she’ll be alone.

I just worry.

I manage her schedule of what will soon be 12 doctors, specialists and therapists. Some she sees by-weekly, others quarterly, others yearly. I keep track of research, minute shifts in development, growth, eating habits, sleep habits, tests, procedures and behaviour that might indicate a need to see one or all of the 12 professionals that tend to her care.

I find foods to try, toys recommended by therapists, routines that might help promote sleep, cups she might hold, groups that will welcome her.

I work. I parent another child. I cook. I think about cleaning…

I love her without question and I do all of this and would do 10 times more…if required.

I’m not amazing, or a super hero or anything like that. I’m just doing what I need to do. Or rather, what she needs me to do.

I’m a mom. And I know we mom’s are a time a dozen.

And it IS true that, like others moms, I have hopes and fears and dreams for the future.

But it’s just not the same.

It’s just not.

 

Williams Syndrome Wednesday: 1 Year Adjusted

by , on
Feb 1, 2014

Dear Obi,

One year ago today was your due date. You were born almost 6 weeks early, and despite what everyone said at the time, you haven’t ‘all but caught up’ by your Adjusted Birthday.

You’ve checked all the little boxes for 8 month milestones and have, just in the last couple of days, finally checked off the first ones for 9 months. You’ve now clapped and banged objects together. You reached your hands up to be picked up this week too.

Although they are not on the list, last week you gave me my first official hug, and today you gave me my first licky kiss. Amazing.

I can freely admit that it stings to watch all the babies pass you by. It really does. But as you slept curled up on my chest yesterday morning…when I should have been working, I got to enjoy the flip side. This baby time is so fleeting. And the mom’s of all those other kids have already started to say goodbye to the magic of these very firsts. The toothy grins, the first peek-a-boos. The snuggley sleeps that fit right on my chest, with a neck nuzzle and tucked up knees. A warm little bundle, still wearing 3-6 month clothes (depending on the brand). Still my little baby.
That’s what I celebrate today. So, so many unexpected things have thrown curve ball after curve ball since I learned that this day should be your birthday.
But having a sweet baby, my last baby, just a little longer than most is the bright side.
Happy One Year Adjusted Birthday little one.
Sweet, sweet dreams.

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Williams Syndrome Wednesday: The Unknown

by , on
Sep 26, 2013

Control. Surrendered.

Expectations. Unrealistic.

Certainty. Uncertain.

Possible. Yes.

Impossible. Yes.

Probable. Not likely.

Likely. Not realistically.

It’s the unknown that makes this journey so challenging. It’s a huge spectrum. There’s no knowing where she’ll sit on it. Though she’s caught up on many milestones, there’s no research that supports this will mean she’ll remain on that curve. She could stall at any time and find herself falling behind again.

Will learning sign language help? Maybe. Will OT ward off physical delays? Perhaps a little. Will the early, consistent exposure to solids help prevent food issues? Could be. Or not.

There’s just no knowing.

And if there’s one thing I hate in this world it’s not knowing.

I realize I need to surrender my need for control and just accept things are just going to be as they are.

I just can’t figure out how to get there from here.

Williams Syndrome Wednesday: Sit Up Proud

by , on
Sep 11, 2013

Little Miss sat unsupported for a short time today…maybe 2 min. After spending time with a Mommy group filled with typical children yesterday and having a little boo-hoo over how hard it is to watch all the kiddies moving so quickly through sitting to making moves towards crawling (or already crawling) and now starting to pull themselves up, to say I was delighted was an understatement.

Of course the camera was no where to be found and phone battery was dead, but I’ll snap some pics today if she’s interested in a repeat performance.

As I go through this journey I’m constantly amazed at how I can feel overwhelmed and come down with a bad case of the poor-me’s/poor-her’s and then, the very next day, be so amazed.

It’s a real up and down, one-day-at-a-time thing isn’t it, life.

Today is an up day. Here’s hoping tomorrow will be the same.

Williams Syndrome Wednesday: Heart in my Throat

by , on
Aug 29, 2013

I did a 5k run this past weekend. I used to run a lot but after hurting my back, I’ve been on a break for about 5 years. I’m one of those few people who actually loves to run. So this summer I laced back up, knowing that running is cheaper than therapy, and a serious help in the butt reduction department.

I ramped up my running 13 years ago after my father passed away. Again, using the running is cheaper than therapy approach I put one foot in front of the other for Km after Km, eventually completing a marathon, trying to manage the grief that overwhelmed me.

During that marathon, around mile 18, I suffered from a major panic attack. I was overcome by the realization that my dad was gone, really, really gone. And no matter how far I ran, he was never coming back. It was a powerful moment. It sucked the breath right out of my chest. I actually wondered if I’d be able to carry on.

I finally caught my breath. Finished the race. Slowly but surely started to feel better.

This little 5k should have felt like a little run in the park, but about 3k in, I had a very similar experience.

There was a dad and 2 daughters there, cheering on their Mom. There were signs obviously made by the kids. They were jumping and cheering. They were so ‘normal’.

Now I see kids and families and people all the time. There was no reason for this particular family to stand out.

But they did. And I felt that crushing pain in my chest that I haven’t felt since that sunny day in May in Vancouver when I was running that marathon.

I thought “She’s never going to be just like other kids. She may never be able to write a sign like that. She may never be able to run with me (williams syndrome kids sometimes have a hard time with balance and sure-footedness).It just makes me so friggin’ sad.”

Huh. I certainly wasn’t expecting that.

So I took a deep breath and let a little reality sink in. I can’t run Williams Syndrome away from her. It is what it is and what will be will be. I have no way of knowing what that is until she grows and develops and becomes whoever she is destined to be.

I can’t control this. I can’t make it go away. I can’t make it better.

I was kind of embarrassed about the tears streaming down my face as I ran the 3rd Km. I hadn’t noticed them starting. But I sucked it up. I wiped them away, finished the run, took a deep breath.

I can only do the best I can. At the end of the day (or the end of the run) it’s all any of us can do.

Williams Syndrome Wednesday (Friday Edition): Running Between the Raindrops

by , on
Aug 24, 2013

Sometimes, when I get asked too many questions or read too many Williams Syndrome sites online, I start feeling overwhelmed by all the ‘what if’s’ and ‘could have’s’ and the unknown. What lies ahead feels like ‘too much’ when confronted with all the possible things that could be an issue as time passes.

I find, at these times, I cope by trying to focus on one little baby thing that Obi is doing that seems like a regular baby thing. I listen to a gurgle. I coax a smile. I watch her pass a toy. I try to forget how late these small moments are compared to typical babies, how few gurgles and smiles I get, how slowly the toy moves. I remove expectations from the equation.

I make myself let it all go and I really really do enjoy the moment.

I’m so grateful for these little flashes. They are so precious to me, more than they were with the boy. With him, I remember the milestones. Smiles, rolling, teeth, sitting, pulling up etc. Each of these ushered in a new phase for him, and for me – new toys, new games, new challenges. New triumphs.

No, for her it’s the quiet ‘nothing’ moments I love. They are boring. Everyday. Typical. They run between the raindrops of her WS. Almost like a barely visible thread that knits all the parts of her that aren’t her diagnosis into a beautiful reminder that she is so much more. And that I, as a parent need to be more than a ‘special needs parent’ and that the world needs to know her as more than a WS child.

Right now, it’s easy. But I’m beginning to understand it will be my job, no matter how the syndrome manifests, to make sure the world continues to see her that way.

 

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