Williams Syndrome Wednesday: Some things about having a baby with a rare genentic syndrome…

by , on
Jan 22, 2014

…that you maybe haven’t given much thought about. This past week we had the 1 year anniversary of Obi’s homecoming after 25 days in the NICU.

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We had no idea the journey that lay ahead. Realizing that Obi was not coming along like a typical baby, identifying possible causes and bringing them to her doc’s attention, wading through genetic testing, learning her diagnosis and diving into the steep learning that comes with a complex syndrome like Williams – what a year! I was inspired by this post today on Cheering on Charlie to share some of the thoughts and experiences that have stood out for me so far.

1. It is unbelievably isolating. Charlie’s mom mentioned the same about her micro-preemie experience. In my case, not only are the other cases few and far between, but because it’s a spectrum syndrome, no two cases manifest in exactly the same way. While there are many people who want to help and want to listen, at the end of the day, it’s a journey one undertakes alone. No one else can really know what it’s like. Even my DH and I are experiencing it differently.

2. There is a vague understanding about what her life will be like, but there is no one road map that you can look at and say, I understand how this will go. While this is true for all kids, there is a widely accepted norm for typical kids that is simply absent. Of course no one knows what the future will bring, but I really, really don’t know. It makes living in the moment incredibly important and horribly difficult.

3. There is worry and fear unlike anything I experienced with my typical baby. There is worry about every meal, every sound, every movement. As each and every baby we know flies past her in development, those that are the same age, those that are 6 months younger, the impact of her condition becomes more tangible. What will this mean as the months turn into years? There is fear of tomorrow, next week, the week after that and every week from today until the end of my time, and then there’s the worry for the time after that. It is ever present and unrelenting.

4. Knowing she will always be ‘different’ is a hard pill to swallow. As someone who has always been a little odd, one would think I would have an easier time embracing this. And yes, I have hoped for my kids to be the ones who march to the beat of their own drums. But knowing she will have no choice in the matter, that children may point, that adults may stare or worse, that people will avert their eyes and look past her, and that she will have no ability to fade into the masses if that is her only wish, makes me sad. I have read that lots of individuals with Williams Syndrome are wonderful, bright and loving and people are drawn to them but not being able to picture just what her version of Williams Syndrome will be at 8 and 16 and 23 and 40 – I fear that she will feel her difference and experience isolation and loneliness because of it. I hope I am so very wrong about that.

5. There are moments of mind blowing clarity when I look at my little critter who seemed to defy the odds at every turn. She fought her way into existence. and continues to fight to conquer even the tiniest milestones, ones so small you don’t even notice when a typical baby just sails though them. She proves every day that while, she may be a mystery, she is no mistake. She, just in being, makes me want to be better. If I could have half the fight and determination she’s already shown? Well, I should be so lucky.

Gabrielle takes Williams Syndrome to the Big Screen

by , on
Jan 10, 2014

It’s finally being released across the country! Gabrielle, Canada’s Oscar submission for Best Foreign Film opens in Toronto at the Tiff Lightbox and in Ottawa today, and in Vancouver and Winnipeg on the 24th.

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Back in September I had the pleasure of seeing Gabrielle at the Toronto International Film Festival. Directed by Louise Archambault, the film stars Gabrielle Marion-Rivard, a Quebec actress making her film debut who also happens to have Williams Syndrome. The cast was present for the screening and I had the pleasure of speaking very briefly to Gabrielle and her Mom after the Q&A was finished. She was lovely in person and her Mom was also most gracious. There was at least one other family with a child (young adult more specifically) with Williams Syndrome who asked some great questions at the Q&A – most importantly, the young man wanted to know if Gabrielle was single and if she was interested in a date, which caused much blushing for both parties. Ah, young love.

The film, a coming-of-age romance is, at times, heart-wrenching and at times, uplifting but that’s where the ‘typical’ ends. The two main characters meet in a choir for young adults with developmental disabilities.

The sweet love that grows between them is as pure as it is troubling to his parents. We see Gabrielle float between woman and girl, craving independence and needing support, finding her own way and getting lost metaphorically and literally. It is both riveting and hard to watch. But you can’t help but cheer her on in her fight to be heard and to experience love and life to the fullest.

I’m no film critic, and to be honest, I was watching the story unfold through the lens of a parent with endless questions about what will come to pass for my own daughter, so you may want to read what some others had to say about the film.

The Ottawa Citizen says “Gabrielle, the character and the performer, is someone to root for.”

http://www.ottawacitizen.com/entertainment/movie-guide/Movie+review+Gabrielle/9370553/story.html

The Toronto Star says “Gabrielle reminds us, through love and music, that perception is not reality and that prejudice is an attitude, not a truth.”

http://www.thestar.com/entertainment/movies/2014/01/09/in_gabrielle_love_and_music_define_true_meaning_of_normal_review.html

And the Montreal Gazette says “On the surface, it’s a simple love story: girl meets boy, girl likes boy, girl kisses boy. But Louise Archambault’s Gabrielle is much more. The Quebec director’s second feature is a deeply affecting tale of difference, dignity and the healing power of song.”

http://www.montrealgazette.com/entertainment/movie-guide/Review+Gabrielle/8932958/story.html

You can watch the trailer here.

I have a pair of tickets to see the film at the TIFF Lightbox for one lucky reader here in Toronto. Head over to facebook.com/mommydoCA and and leave a comment under the post for this blog entry. I’ll do a random number draw tomorrow, Saturday, January 11 at 12 noon, and notify the winner. Then we can arrange how I can get the tickets to you in a timely fashion. You must live in Toronto to win.

Even if you don’t win, I strongly urge you to check out the film, if only to gain greater understanding of Williams Syndrome and my little Obi and enjoy some great Canadian movie magic.

Williams Syndrome Wednesday: Something Nice

by , on
Jan 8, 2014

Something nice happened when I learned I had a child with Williams Syndrome.

I became a nicer person. I became a person who couldn’t afford to be completely self centered (though I am ashamed to say, I found those 40 self-centered years to be pretty fun. And I never really gave any thought to why there was a problem with that). Overnight I came to understand that I would not make it through this process alone – that none of us makes it through this alone. Oh, and that there were people I should have tried harder to be there for that I never even thought to reach out to. (That part still makes be feel bad.)

I also realized that the past is the past but there are things, big and small, that need doing now. And if not me, then who?

In order for my child to grow up to be loved and accepted in society, I believe folks need to have some awareness about her syndrome. Someone should really work to raise awareness on her behalf, and on behalf of all individuals with Williams Syndrome.

And if not me, then who?

There are therapies and specialists – so many it makes your head spin, and someone needs to understand how they all work together. And needs to be able to share this info with the next parent who feels lost and alone.

And if not me, then who?

Someone really should make people understand it’s not ok to say ‘retard’, ‘retarded’ or any other derivative of the word.

And if not me, then who?

Someone needs to let other parents of kids special needs know they are not alone.

And if not me, then who?

That’s the reason I took it upon myself to Cheer on Charlie in the Virginia Parks Photo Contest (in which they netted the most votes, by the way). Because they were a nice family who needed a break. Because their story touched my heart. Because someone really needed to drum up some votes so the little family with the cute little girl who goes though a number of the same therapy sessions as Obi is now who really wanted (needed) to get away had a fighting chance to do a ‘normal’ thing.

If not me, then who?

Well, in this case, it turned out to be me, and a whole bunch of you. Which is also nice.

Remember that feeling of being a nice when I come calling for my first Williams Syndrome Awareness Event. Know that we may have the only WS kid there…I don’t know any others in Toronto yet. Given the probability of having a WS child – between 1-7500 to 1-20,000 – statistically only 19-50 will be born in Canada this year.

According to those stats, there are only 2000 or fewer individuals with WS under the age of 20 in the entire country. That makes it rare. Like, really really rare.

But Williams Syndrome being rare doesn’t make it any less of my reality or her reality. It doesn’t mean that people shouldn’t learn more or accept more.

It doesn’t mean she should have to live less of a life because she’s only one of a few that has these 28 less genes than you or me.

She, and all the other little peeps with Williams Syndrome and a host of other little peeps with countless other conditions and syndromes need all of us to make sure that everyone gets to live their lives to their fullest potential.

If not us, then who?

Williams Syndrome Wednesday: Not Ok Holiday

by , on
Jan 1, 2014

I took a little blogging holiday over the holidays. There was a lot to process and I couldn’t quite bring myself to form my thoughts and feelings into words.

First, I found myself reliving my delivery and NICU experience as we celebrated Obi’s first birthday, only now I was able to apply the Williams Syndrome lens to what happened. This made me feel the need to go back over every painful moment to see if knowing about the WS might somehow change how I felt at the time or the decisions we made. Those were dark days, and reliving them was no better. I don’t know what difference it would have made, other than giving me something else to worry about.

Then there was Christmas. For me, the holidays are steeped in tradition. From the cookies I bake to the ornaments I hang on the tree to what we eat at meals, tradition rules the days. I was reminded time and again as I went through the rituals, that sweet Obi may never follow in those footsteps. She may not be able to make cookies on her own or whip up a turkey dinner. She may not be shopping for gifts – reveling in the thrill of the hunt – designing wrapping schemes and sneaking around.

She won’t have kids of her own. She won’t be Santa. She won’t have a home of her own to put up a tree and hang the ornaments that my grandmother gave to me.

I totally get that lots of people don’t have these things. Many of my favourite people don’t have kids by choice or by circumstance. Some people just don’t like to bake, can’t cook, hate Christmas, marry into another faith and choose not to celebrate. There are no guarantees. But knowing already. Knowing now that it may not be up to her…that these thing may simply be out of reach for her, well it nearly broke my heart in two.

We had a wonderful Christmas. The company was fabulous. The food was fantastic. The boy was filled with glee. Santa was generous.

Even so, it was a hard time. It’s been a hard year. There’s no way to know if next year will be better or worse. I know so much more than I did sitting in the NICU trying to get a 3 3/4 lb baby to eat. But in knowing I have learned how little I know.

Sigh. I’m hoping for a better year.

Williams Syndrome Wednesday: My 1 year old has Williams Syndrome

by , on
Dec 18, 2013

It’s crazy to say it – but Obi will be one on Sunday.

Mommydo WS First Birthday

We had a party which was well attended…an experience that really drove home my worry that it may not always be this way. There may be years when no one wants to come to her birthday party and that makes be cry a little each time the thought crosses my mind.

I certainly took a few minutes to have a pity party of my own. I looked back at the photos of my son’s first birthday party. Where he was developmentally, where I was ‘parentally’… it was all so different. I remember him climbing the stairs for the first time that day, pulling to standing at his gifts. Holding up 1 finger as I taught him to when someone asked how old he was.

Obi was lovely at the party – smiling at all the guests and generally being her best self. She sits well, though can’t move from sitting or into sitting on her own. She now makes 1 consonant sound, and will look up when you say her name (at least some of the time).

It’s really hard not to compare, especially at memorable times when the differences between my typical child and my WS child at the same age are crystal clear. It makes me sad for what has not come to pass, and anxious about all that I’ve yet to learn.

I would be super down in the dumps except, as always, there are positives too, steps forward that won’t catapult us into a ‘typical’ time frame, but that show hard fought progress.

The first? She has started using her first SIGN LANGUAGE sign. She signs MILK. Every time I see it I’m amazed. Though her speech and language skills are quite delayed, little Miss is communicating with me. This pops my pity bubble every time it happens, as though that tiny squeezing hand is trying to pump all the sadness out of me and replace it with pride. According to the instructor, the average time kids start to use signs to communicate is 13 mos. Eeeeek!

The second thing is she has started to eat. She has taken to solids with gusto. It’s messy and marvelous to watch. It’s a HUGE relief to see her eating baby cereal and fruit and veg and yougurt. So, so good.

The good, the bad, the ups, the downs. It’s been quite a year. I wonder what next year will bring?

 

Williams Syndrome Wednesday: The Joy Edition

by , on
Nov 28, 2013

I wrote an entirely different post. But when I read it, it was well… sad. You see, it was this time last year that things started to go south fast in my pregnancy. Warning signs lead to tests lead to hospital bed rest lead to more failed tests lead to worry about baby’s safety lead to emergency c-section lead to Christmas, New Year’s, my birthday in the NICU lead to home on RSV season house arrest lead to a laser focus on Obi’s delays lead to tests lead to diagnosis lead to more tests, therapies, adjusting to the new normal.

It’s been a year filled with the unknown, worry, disappointment, grief and challenges. It’s been a very, very long year. And when you stop there, it sounds like that’s all it’s been.

Which is far from the reality. As with any new baby, there have been all these tough times, but there has also been unimaginable joy. I suppose this is also the real lesson I’ve learned as a parent of a special needs child. It is true that the lows are lower. The hard times are harder than with a typical child, there’s no question. But these don’t take away from the splendour or the majesty or the joy.  I think they probably make it all a little bit sweeter.

The calendar is triggering all these memories of how things went from what I expected when I was expecting to this giant uncharted sea that is Williams Syndrome. But the calendar is also signalling my most favourite time of the year. It’s easy to stay at the pity party and wallow in the woe-is-me’s, but that’s not gonna help anything AND it’s going to mean next year I’m looking back at this year as another one that fell flat.

So to try and move past what happened last year and embrace THIS season, I’ve decided to stuff my advent calendar with little reminders of all the magic that happened this year. To actually count my blessings – 25 of them – and take 25 days to reflect on what a wonderful year it’s been. Really, learning my child has Williams Syndrome is just ONE thing that happened. This also happened:

1. Our infertility journey came to an end when we welcomed the sweet baby girl that completes our family.

2. We were fortunate to spend our NICU time in an incredible environment and never worried for one minute about the love and care Obi received.

3. Although Obi ultimately didn’t become a ‘nursing’ baby, the time we spent trying was filled with sweet bonding moments.

4. My eternal newborn still has that sweet baby smell, at almost 1 year old.

5.  The boy has blossomed as a loving and nurturing sibling.

6. Obi’s first smile very nearly melted me into a puddle of goo and every one since has been glorious.

7. I have learned are really good people in the world whose sole purpose is to ensure children shine.

8. I got to experience the feeling of holding a new (day-old) baby again when there had been many days I thought I never would.

9. People have been gentle with me when times have been rough.

10. My business is fine despite taking a backseat.

11. I realized how grateful I am that we live near Sick Kids.

12. Obi saw many specialists but so far has no concerning health issues.

13. Obi laughed and it was magical.

14. I learned that small babies stay ‘babies’ longer – and I love babies.

15. I took a stand against something and found others stood with me.

16. Through Mommydo, I came to feel I am not alone.

17. I got to take long walks with a sleeping baby in a stroller.

18. I got to watch a lot of great TV while a baby did not sleep at night.

19. I made new friends that I would never have met if things had been different.

20. Obi sat for the first time and I thought my heart would burst with pride.

21. I made nice with my bre.ast pump and have met the goal of 1 year of bre.ast milk for my little miss – a huge accomplishment.

22. I brought a tiny human into the world and she has changed me and all those around her for the better.

23. I learned what unconditional really means.

24. We gained a whole new ‘family’ in the Williams Syndrome community.

25. With Obi’s arrival I experienced sorrow, but not as deeply as I experienced JOY.

Williams Syndrome Wednesday: Genes or Just Because?

by , on
Nov 20, 2013

So there’s this problem we’re having. It’s kind of like when a baby isn’t sleeping through the night… except that by ‘not sleeping through the night’ I mean “baby won’t close her eyes for any reason, like not even to blink between 11pm and 2,3,4,5 am”. The time on the clock is variable but the effect is the same. We live in a zombie like state. We’re 4 weeks from one year of not getting any freakin’ sleep.

We have devised a system whereby one parent stays on the main floor with baby and weathers the sleepless storm of tears, kicking, fussing and blood curdling screams and the other sleeps upstairs in the bed…the sweet, sweet bed.

There are many things wrong with this system, I know. But we were barely surviving and this was the best we could come up with.

The question is whether the sleeplessness comes from her WS or from a series of bad sleep habits that she’s picked up along the way. And I suppose, in addition to that…does it matter?

I know a lot of kids with WS have sleep issue, but then, many kids without do to.

I spoke to my Doc and she suggested abolishing the bad sleep habits first, then see where we’re at.

Huh. Never thought of that. (of course I felt kind of dumb on the phone…)

I fear I’ll spend a great deal of my parenting career with her trying determine where something is the syndrome or just a typical kid thing. It’s hard not to blame WS for everything. I’m still a little mad at it.

So I’m gonna make a conscious effort to see Obi first and the syndrome second. To embrace the ‘just because’ before the genetics. Sure, for true medical issues I will remain super vigilant. But for the rest, for the quirks and questions, I want to parent ‘who my child is’, not ‘what she has’.

I suspect there will be many times when the line is a little fuzzy but really, after not sleeping for a year, everything is fuzzy.

Here, of all places, watch your mouth.

by , on
Nov 8, 2013

That’s what I felt to today while at developmental play group.

Every week Obi and I participate in a play group that integrates typical kids with those who are experiencing developmental delays. Some are preemies who are just a little behind. Others, like Obi have a diagnosis. And the rest are just typical kids who come to take advantage of the program which includes free play, social snack time, gym time and music all in one fab morning a week.

The group takes place in a specially designed room for the 0-2 set in a building that houses an integrated preschool. It also caters to both typical kids and those with physical disabilities and/or developmental disabilities.

I think of this place as a ‘safe’ zone – where Obi is just one of the gang.

Today, there were 2 incidents that ticked me off.

The first was during snack time when a mom, who was having trouble opening a sippy cup, said “I’m so handicapped sometimes.” REALLY? Who says that? And who says that HERE? Geez, bad choice of words. Bad company to use them in. Just bad.

Then, not 45 min later, another Mom, in the room with just me and the mom who earlier made the remark above, used the R-Word. Yep. In the one place that accepts kids with all levels of ability. In front of one of the Moms known to have a baby with a diagnosis (ME) that would fall under the umbrella of that word back in the day.

THE R-WORD?

I couldn’t let that one go. I said “I’m sorry, you just can’t use that word anymore. It’s not acceptable.”

She sort of looked at me like I was the word police and the other mom asked “what word? Did she say something bad?”

“Yes.” I said. “Retarded.” (I kind of threw up a bit in my mouth as I said it outloud) “It’s not an appropriate word to use, especially around people like my daughter”.

Well, she launched into an apology that might as well have come with a shovel to help her dig herself further into the hole she was creating as she spoke.

There was “I know I have to stop saying it.” “I just can’t help myself.” And, “When I say it at home I have to tell my son it’s a bad word and he shouldn’t use it.”

OK – I get that it’s been a part of the vernacular for quite some time and habits are hard to break. But to use that word enough that you need to warn your child not to repeat it just isn’t cool. NOT COOL Mama.

Especially not cool in that place. ESPECIALLY. What if some of the preschool kids in the next room heard you? What if a parent of a child with a developmental delay heard you?

Oh wait. They did. I DID.

And now I really don’t like you.

I’m pretty johnny-come-lately on the mission to take the R-word out of conversation but there is a whole movement.

In case you’d like to read more about what people are doing and why you too should never, ever use the R-word again, visit Spread the word to end the Word.

And, if you do feel compelled to drop the R-word, be sure not to do so at a babygroup/school for kids with developmental disabilities. Or in front of me.

Williams Syndrome Wednesday: I’m not special and my brain hurts

by , on
Nov 6, 2013

I’m tired of reading things like “God only gives special children to special parents” and “she couldn’t have come to better parents”  or best “special needs parents are the bravest/strongest/whateverest”. Pffht. My child is special. ALL children are special, but one of mine needs a little more than most. This has very little to do with the kind of person I am or am not.

That being said, I am the kind of person who needs to know things. I’m a why? what next? and when? person. So it comes as no surprise that I struggle a little with the “Why? Because.” aspect of having a child with Williams Syndrome. I have read that WS children are born to parents of all ages, all races, with all types of conception stories. It’s a rare syndrome, but not one that discriminates. It picks the not-so-special parents too.

So in attempt to answer the Why’s I’ve enrolled in an online course called Useful Genetics. In doing so I have learned a few things about myself:

1. I am willing to do just about anything for my little girl.

2.: There are reasons that they tell you to take biology in high school and this is one of them.

3: We are complex beings.

4. Genetics makes my brain hurt.

I wish finding answers to complex questions was easier than Useful Genetics. I wish I was one of the ones who could accept the “special people = special kids” theory, feel all puffed up about myself and move on. And, I still kind of wish I was one of the ones who never has to think about this stuff at all. Or transcription, translation, codons… you probably took biology and already know what those are. Sigh.

I’m not sure I’ll ever know why our perfect Obi came to be the way she is.  But I do look forward to closing the book on feeling like why matters.

Oh yeah, I’m only in the first week.

Williams Syndrome Wednesday: Learning to Fly

by , on
Oct 30, 2013

I find this new role as a ‘special needs’ parent is quite overwhelming at times. Emotions aside, the logistics are complicated. There are appointments to schedule, keep track of and attend, therapies to practice, milestones to work on. There are new tactics to try to overcome issues (like feeding, for us).

Then the emotions creep back in. Once all the other stuff is ticked off for the day there are things to worry about. Things to fret over. Things to be mad about. Things to feel like you did poorly today. There are things I didn’t do because I just didn’t have enough left in the tank so I have to feel guilty too. Then I have to pick myself up and dust myself off because tomorrow is another day and maybe tomorrow will be the day when it starts to get easier. When I’ll feel like I’m getting the hang of these added parenting challenges (rather than feeling like they’re hanging me.) Maybe tomorrow will be the day when I feel like I’m taking it all in stride.

I hope Obi spends her whole life oblivious to the challenges I have learning to navigate through these early times in her diagnosis. I hope by the time she remembers things, the learning curve evens out and all the emotions wrapped up in it even out too. At least some parts have GOT to get easier. (I know as I type this there will be other parts that just get HARDER too, but perhaps managing the process will get easier).

I hope, to her, it’s all just like this.

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I hope she gets to feel like a kid, just like any other. Flapping her wings. Little by little, learning to fly.

Happy Halloween!

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