Yes, I said Happy Party. And yes, #WSHappyWalk is about a rare syndrome called Williams Syndrome. A rare syndrome you’ve likely never heard of, unless you’ve ever spent any time in a room with me, and then you’ve probably heard more than you care to about it.
At some point in that conversation you probably thought, “wow, I’m glad that’s not me.” And you likely had to stop yourself from making the pity face. And I get it. Having a child with a rare syndrome that comes with the potential for countless medical challenges – cardio, kidney, gastro, hearing, sight and more, physical challenges, learning difficulties, social challenges and all sorts of other little goodies isn’t a walk in the park…but that doesn’t mean it isn’t also filled with joy.
Our family has small pleasures and belly laughs. We applaud both our kids’ milestones and we challenge those around us to see our daughter with Williams Syndrome through the same lens through which they view every other child. We look for inclusion, and stand up to barriers. I seek out other families walking the same path and am on call for those just starting this journey (even though our journey has only just begun).
I also weep with families whose beautiful children are taken too soon, leaving this world a happier place for having been here.
It is true that it’s much more likely that our children will be taken too soon.
This is why I also work tirelessly to spread awareness and raise funds. Not because my daughter’s syndrome is so sad. But because I can’t bear the thought of all the happiness that is packed into my tiny girl could leave us, unexpectedly, in a sudden event, for no reason except we just don’t know enough about Williams Syndrome.
So please, please join us on Tuesday May 31 as we take to Twitter to raise awareness for Williams Syndrome and spread the word about the #WSHappyWalk.
We’ll be chatting about Happiness, Williams Syndrome , the #WSHappyWalk and how you can help spread awareness. Plus, you could win an iPad mini courtesy of Telus, an Instax mini8 camera from Fujifilm, and more. There is now over $600 in prizes in total.
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.
…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.
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.
I have a confession to make. I seem to have a large foot stuffed in my mouth over and over again. I keep saying the wrong thing -particularly to one parent who has an older boy with significant physical disabilities and a second, a typical child Obi’s age. See, even that, is that the right way to say that?
The most recent foot-in-mouth incident arose when I was piping up in a conversation between said woman, another woman with a boy about Obi’s age who has similar developmental delays and myself.
The woman with the boy close to Obi’s age was asking the other about making the decision to have a second child when the first one has special needs. My addition to the conversation was that you’re making the decision knowing what lies ahead and what it means for your family. I found that when I had one typical child already then learned that Obi had special needs, I worried for the first. How would this change his life? What does it mean for him? We knew that we were pushing pretty hard to have #2 – (you can read all about that here) I wondered if we should have…
Now woman with older special needs boy and typical girl said “well it will only make him a better person” and walked away.
Hmmm. Didn’t mean for that to happen. Also didn’t mean to say that he wouldn’t be better for the experience of having Obi. Just meant to say that you have all the same doubts and feelings of guilt whether you plan to have a second after you have an extraordinary child or you find out that your family has grown by one and it’s taken you in an unexpected direction.
Just meant to say that when you’re in the throws of the ‘poor me’s’ a lot of things go through your head. For me, I wondered if it was my fault? (It wasn’t). If I had just been happy with one child would we have been better off? (We wouldn’t have.) Will Big Brother resent us and his sister later? (Perhaps, but if she was an Olympic Gymnast, one of those crazy med-school-at-15 kids, a kid who’s allergies keep peanut butter out of the house, outgoing while he’s shy…he might resent us/her too. Siblings resent all kinds of things.) If we, our family, our marriage, if I would survive this. (Well I will, our family likely will and our marriage? Well the statistics say no but I’m choosing to remain optimistic)
I was trying to say, there’s no right answer. You just have to do what feels right for you.
Instead she walked away and appeared appalled that I could ever thing my sweet baby was ‘less than’ and by association her boy was ‘less than’. (maybe I’m reading too much into that. maybe her baby girl, who wandered off, needed her).
Regardless, the moral of the story is We, us parents of special needs kids, we get it wrong too. When you’re talking about a child with an unfamiliar diagnosis we ask stupid questions we regret later. When we’re in a group with a child that exhibits behaviour that’s different or unexpected, we look ‘too’ long.
But we still ask. We still look rather than looking away. And that’s what we want you to do. Sure, you may stuff your foot in your mouth time to time. Been there. Done that! But please, ask questions. Make positive comments. Choose to learn rather than look away. When I say things that come out all wrong, I hope the parent knows I have the best intentions even if I don’t have the best expression of them. Just as I know you have the best intentions too.
If we get it wrong, you’re bound to get it wrong sometimes too. We’re all human. All just doin’ the best we can. So I urge you to keep trying to connect – foot be damned. It’s the only way any of us is ever gonna get it right.
PS: Mom at group, I’m sorry if I made you feel bad. It was certainly not my intention and I think my words just didn’t accurately express the emotion I was describing. People say stupid and inappropriate things to me all the time. But as long as they are trying to get it right, I keep listening. I hope you can understand this apology though my foot.
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?
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.
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.
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.
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.
I hope she gets to feel like a kid, just like any other. Flapping her wings. Little by little, learning to fly.
I overheard someone talking to a pregnant woman the other day and realized something. I have a little confession to make. I’m carrying around a little guilt. And it’s probably nothing, but it’s weighing on my mind.
I heard the expectant woman say “the phrase.” I’m willing to bet every pregnant person has said it at some time or another. I said it. I said “We just want a healthy baby.” And, “I don’t care what we get, as long as it’s healthy”.
We all say it – but we don’t really think things will turn out any other way. Do we?
“Hello Guilt? It’s me, Mommy. I take it back. I don’t just want a healthy baby. I want my baby. And she may not be perfectly, ‘healthy’ but I really do want her anyway. Give me my WILLIAMS SYNDROME baby.”
Yep. We don’t really spend much time thinking about what will happen when baby isn’t the kind of healthy we assumed we’d get. And maybe we should.
I know, nobody wants to scare the fragile pregnant people. But I hazard a guess that if we spent a little more time talking about some of the possibilities that lay on the outskirts of healthy, it would take the tiniest bit of the sting out when it happens.
Maybe the world would be a little less shocked when you mention your child has special needs they’ve never heard of. Maybe people’s faces wouldn’t betray the moment when they think “I’m so glad that’s not my child”. Maybe they’d put away the pity face.
When they see the little pink line, nobody ‘wants’ a non-typical kid. They don’t daydream about a future filled with therapy and feeding struggles, and days at SICK KIDS and worry. No one day dreams about the worry. I get that. I also know that people have them – those non-typical kids. All the time. I have one. And you know what? I love her just the same.
I have learned that I was wrong and I’m sorry. I wish, when asked if I’d like a boy or a girl I’d said “It doesn’t matter” and left it at that. Because I have learned that a lot of things that I thought mattered, just don’t matter at all.
Sure, a whole bunch of things I never daydreamed about now consume the better part of my days. But that warm snuggly feeling I pictured, cuddled up close in the middle of the night? Turns out, I still got that part exactly right.
Mommy groups filled with typical mommies caring for typical babies can feel very isolating. I’ve learned when you’re parenting a child with a developmental delay caused by a genetic issue, it’s really hard to relate. In addition to the day-to-day feeling that you can’t keep up with the conversations about what’s happening with the babies that one-by-one pass yours by, there’s the uncertain future that makes you, and others, uncomfortable. For instance, you often hear, I’m letting my baby XXX (co-sleep, have a pacifier, potty-train when ready, skip tummy time) because no one every goes to university (sleeping in their parents bed, with a paci, unpotty trained, unable to push up on their tummy). Which is all well and good…unless you’re uncertain if your child will be capable of going to university at all.
Talk about a mommy-group mega-downer.
But finding other mommies of small kids dealing with genetic issues and resulting delays is a challenge. Until it’s not. This past week, Obi and I started going to a baby group that incorporates typical and special needs kids and their parents. I was a bit nervous walking in last week but I quickly settled in and found some moms that are going through a lot of the same stuff I’ve been dealing with. Finally! Someone who ‘gets’ where Obi and I are at.
Of course, with those who ‘get’ often comes those who should ‘get lost’. There was one more mom sitting in our little circle amid a room full of about 20 parent & baby combos. This woman also had a story. Her first child (not the one in the group) was a micro preemie. He spent weeks and months in the NICU, was touch and go for quite a while and now is “a perfectly healthy and happy 5 year old, reading at a grade 2!!! level”. All this was delivered in a manner that made it sound like her son was now typical and someday ours would be too.
Now I get that she’s been through a lot. Nobody gets out of the NICU unscathed. And it sounds like she had quite a ride. But, there’s a time when you need to find your people. And 3 moms with kids with chromosomal abnormalities all talking about the uncertainties, isolation and fear that comes with this type of diagnosis…we’re not your people. Once you got to the “everything is great and now my kid is 2 years ahead” part you self identified as one of the mom’s who just can’t get what we’re going through in a few minutes on some squishy floor mats at a mom’s group.
I know you don’t mean too, but you kind of make us feel bad. And it seems just a little like you need to try and make us feel better to make yourself feel better. Which also isn’t helping.
I’m all for talking about “motherhood” as a concept. I’m all for hearing about your child’s personality or about how you feel about going back to work. But I don’t want to hear patronizing comments about how Obi will ‘catch up soon.’ I know that sounds bitchy, but I just don’t. Especially when they cut off another mom who has been as desperate to talk to someone else who got a life changing diagnosis as I am.
Stay. Listen. Learn. Smile. Nod. Compliment the cuteness of our kids. But if you can’t keep your awesomeness to yourself, keep moving to the other side of the room where all the kids that are ‘younger than ours but are crawling around like champs’ are playing. Go play my-kid-is-better-than-your-kid with them.
I’ve found my people. And I’d really, really prefer you don’t ruin this for me. For me and my people.