All the fundraising and workshop planning is going great. The auction closes tonight!!!
But real life continues. Obi currently has a team of 14 doctors, specialists and therapists and this we added two more, which stung more than I thought it would… And her name came up for a preschool spot today. This specialized pre-school enrolls special needs and some ‘community’ kids (not special needs) and we’re going to check it out in 2 weeks to decide if we want to enroll her or stay on the wait list for another year.
Again, another moment of really realizing my little miss is a disabled child with special needs. I spend a lot of time compartmentalizing everything into immediate tasks and immediate needs and try not to spend too much time on the big picture – but this call with the preschool was very big picture.
Sometimes is all seems insurmountable. I had a little cry in my car after I parked at home earlier this week.
Then I got out, found 5 bucks on the street, and had a ‘it’s just life princess, ups and downs, ups and downs, suck it up’ moment.
While it’s true I can’t change that Obi has Williams Syndrome and I can’t change that there are gonna be days that it stings more than others, there are a few things I do.
I can raise awareness of Williams Syndrome. I can help connect families so we can share information and share the experience of living with someone with WS.
I can love that little chicken to bits so she never has to question her place in the world.
From the bottom of my heart, thank you to all the donors, the bidders, the sharers and the listening to me blather on incessantly about my fundraiserers. In doing all these things, you’ve used your powers for good too. For good and for Obi.
I’ve had the Stokke Crusi for about a year now, give or take. Which is a long time to take to get around to a review. I discovered the Stokke brand in 2009 when I was preparing for the arrival of the Bubble and googled best stroller for bad back. Up popped the Xplory. I was instantly sold, despite the hefty price tag.
Fast forward to April 2013. After a long winter of being stuck inside with obviously not typically developing Obi hiding out from RSV season, I set about getting a new Xplory. I already had an upgraded seat so I thought I’d go and buy a new chassis.
When I arrived at the store, there, in all it’s Black Melange glory was the new Stokke Crusi. It was a vision. I pushed it around the store, doing laps past the new version of my much loved Xplory and decided to forgo the stroller I had already owned for the new one – complete with sibling seat (with the intention that it could be used later when Obi started a nanny share like we had done with Bub.)
It is a wonderful stroller. It really is. It’s lovely. Turns well. Is easy to push. Sigh. But it’s not the Xplory, my one true love.
That being said, there is much to love and I’m certain that if the Xplory was not the one that got away, I would be wholly sold on the Crusi.
It really is an eye catching stroller, even though it has a more conventional look than the Xplory. It does have a large storage basket. (You can see my amazing Epiphanie Camera Bag in there) And it has a nice high handle.
Babes, especially those with low tone like little Obi do better when their feet can touch. The Crusi and the Xplory share the same seat design with the one hand foot rest adjust you can see here.
Like the Xplory, the Crusi is one of the Stokke Connection strollers and I think you can see from this photo, the seat is HIGH. Obi loves to look people in the eye and this seat means she never misses an opportunity… except when she’s sleeping, like in this picture. It’s easy nappin’ because of the super easy adjustment of comfy seat positions.
As you can see here, Stokke makes it easy to figure out how to make the stroller work by making all the parts that do something a different colour. The top push button adjusts recline and the lower one collapses the buggy for transport.
Crusi is totally suited to our big city life. Obi’s caregiver pops on and off the transit, it has a cup holder for trips to cafes and for water bottles required for long beach walks. It’s easy to maneuver, did great in the snow this winter and has an adjustable handle making it easy for me to push and for her caregiver who’s quite a bit shorter.
And of course, as with all Stokke products, the attention to detail and design is top notch.
There are a few little things that get on my nerves. While the 2 stage fold works for me because of the whole bad back issue, I find it doesn’t get super flat and doesn’t lock in the folded position. Not all that important because we have a big enough car but still not perfect. Also, I kick the crossbar when I walk.
Which I didn’t with the Xplory. Which folds flat. And locks. And well, is my first and one true love. Sweet Obi will likely be in a buggy for much longer than a typical kid, and with the latest version of the Xplory hot off the press, I may bite the bullet and buy that frame I was considering last year. No I am not made of money. But I have that second seat. And sometimes you just have to do crazy things for the things you love.
If you like a slightly bigger basket and a slightly less avant garde but still high design look with the same amazing connection, quality and customer service you expect from a premium brand like Stokke, go for Crusi. And don’t forget the option for the sibling seat…(which I didn’t even touch on but we did use a few times when I brought the stroller home and found it would be great for 2 kids around the same age or close in age but was only so-so for my 3 year old who couldn’t understand why the baby got the top bunk and he had to be on the bottom. As this was my original intention – to have Obi have a nanny share before we knew she would do better with one-on-one care – it was a great feature and selling point, just not one that has been used to full potential) which is a nice addition to the Stokke line.
If you are me – loving the look, not needing that much space, not gonna use a sibling seat, have a slightly longer stride, knowing you did the right thing by letting your last Xplory go but wondering why the heck you didn’t just get the same thing over again, go for Xplory.
At the end of the day, no matter what, if you choose a Stokke stroller (and I’ve had all three at one time or another) you will not regret your decision to go with Stokke – even if you pine for another model, late at night. You can read more about Stokke strollers here.
And, although I am an embarrassing super fan who writes on their facebook page a lot, all opinions here are about strollers our family has purchased and used.
I’ve had 2 rather unexpected moments – both really teary and both out of the blue. Sometimes I forget that I live this new and unexpected life. It’s becoming a normal life. Doesn’t everyone else walk in the door and find they’re forgotten an OT appointment and find the therapist halfway through walking lessons with their babe and her caregiver? Isn’t everyone up late scouring the internet for bouncy chairs for developmentally delayed sensory seekers who like you bounce? Did you not take a moment today to wonder if integrated or specialized SpecEd would better suit your child?
I did all these things and didn’t think twice about them (till now I guess, but whatever). I did however, find myself hyperventilating at a funeral last weekend when I saw my great aunts daughters grieving her loss and realized someday that will be Bub and Obi grieving me except she won’t be able to understand where I’ve gone. Oh yes, that was not pretty.
Then this past weekend I gave my cat up for re-homing. He has had a problem with kids since the boy was born and with the girl taking up more and more of my time and the cat having to be kept separate from the kids, kitty just wasn’t getting the love and attention that he deserved. So that was a hard decision but one I feel was ultimately best for him.
Still, standing at the counter, handing him over, I couldn’t help but feel how I’d let him down by my inability to care for him. Then, in the next moment, I was overcome by the feeling that one day I’d have to do the same for Obi – I’d have to arrange for someone else to take over her care as I would no longer be able to give her what she needed. I think I had an actual panic attack. My heart was racing. I couldn’t really catch my breath. I can’t imagine what the person I was giving the cat to thought. I had to say a quick goodbye and make a hasty retreat to go sob in the car.
Is this was lies ahead for us? It’s impossible to say. Just as it’s impossible to know what kind of education is best for Obi until we get there. Or whether any bouncy chair will do the trick, or if I will go before she does. What lies ahead is a thousand little celebrations of things I might have taken for granted in my old life, and a thousand little heartbreaks too. Some that will sneak up like these two, others that will be there the whole time, wounds that will barely heal before they break over again. Big sobs and lumps in the throat. Big whoops of joy and slight warmings of the heart. Just like any other normal life, I suppose. Any normal life.
Have you given thought to the change in how the people see ability? When I was growing up, people who had differences, physical and developmental were kept away. They went through school in different classes. They weren’t playing sports at the same venues or in the same dance classes I took. Every one who was with me was like me, and everyone who was not like me was somewhere else. This magnified the all the ways we were different.
When I learned about Obi’s condition and every day since I’ve fretted about all the ways she’ll be different. From her peers. From her brother. From us. All they ways we won’t really be able to understand what she’s going though. All the ways other people will see how she is not the same.
This week I had an epiphany. It was Facebook’s doing. You know how everyone is sharing those Facebook Anniversary movies. Well, watching mine I had the first real moment of realizing how much Obi looks like her brother. Not just in features, but expressions as well.
I’ve spent months and months noting how much she looks like a ‘Williams’ kid. I was so blinded by this ‘difference’ caused by the deletion of 28 genes on chromosome 7, that I was completely blinded by what was happening on the other 22 chromosomes.
Despite the people at genetics telling me over and over that she is more than the diagnosis, despite loving her absolutely in spite of her diagnosis, I have been completely and utterly guilty of allowing it to overshadow other parts of her.
As soon as the light bulb went off, I was reminded of the time after my dad died.
I had this long stretch in which I could only remember him in that moment. My whole experience of him was whittled down to that brief fleck of time that was his death. At some point, (quite some time later), the shadow that had fallen over the rest of my memories of the time we had spent together lifted, and I was able to see that instant as such a small part him and me. Just a blink. Although his death was so present, so looming, I realized I needed to remember all the days he lived to put the one day he died into perspective. After I did that, joy started to seep back into my life.
Once again, I can now clearly see the magnitude of the shadow that has fallen. It’s been a f$#%ing hard year.
Those differences – they take up a lot of time. Appointments, therapies, exercises, explaining her delays, little pity parties – all about the different.
But sweet Obi looks a lot like her brother. She lights up when she sees him the same way he lights up when he sees me. She likes to ‘dance’ with this crazy wiggle then stop and wait for you to do the same. She has my hands. She has so much in common with her dad, her brother and me. We’re more alike than we are different.
I’m gonna make an effort to me more present for those – the alikes. I need to. And more importantly, I think she needs me to.
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.
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.”
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.”
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.”
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.
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?
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.
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.
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.