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.
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.
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 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.
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.
It’s amazing how everything can be going along tickety-boo, just racing along – then wham, you hit something and everything seems to grind to a halt.
I’ve taken to calling these moments speed bumps. The term makes me feel like whatever is tripping me or Obi or life up is just a temporary thing.
Right now with Obi, it’s feeding. Purées don’t really go down unless she’s sucking them off her soother. Munchies like toast sticks and mum mums are heartily stuffed into the mouth, but any attempt at actually swallowing the thoroughly mushed bits that break off a toast stick she’s gumming results in a gag fest and the bits being spit back out.
Sensory? Something physiological? Who knows?
Obi’s been referred for a feeding study to see if they can find an issue or rule anything out. In the meantime, we’re continuing to try and interest her in food and coax some down her throat.
Her other skills have improved rapidly. She’s met all her 8 month milestones but one – both in gross and fine motor skills. With the help of her fab OT she sailed through. But feeding puts us back to the slow crawl of early days.
They were dark days filled with knowing something was up but not knowing what. And a lot of fearing the worst.
My first instinct hasn’t changed much. Now when I think of all the if/then’s I still start to feel a little panicky. If she doesn’t start eating solids soon, then we’ll need to/she’ll need to…If she has a major sensory issue then…if she has something major like some kind of stenosis that interferes with eating then…
…except I don’t know what any of the ‘then’s’ actually are. Which makes me even more scared.
I had a little moment in the car on Monday, a ‘how are we going to get through this’ tear up moment in which I envisioned all the worst case scenarios when it came to food and eating which made me think of all the appointments which made me think of all work I wasn’t doing as I was rushing off t meet her OT after handing in a permission slip with “unable to volunteer’ checked off for my son’s field trip, which made me think of how I wasn’t able to get groceries as I was late to meet OT, which made me think about her bad eating all over again.
And then I had to pull myself together and think: This is not a crash. Just a speed bump.
If one hits a speed bump then you just work through it and keep moving forward. It’s not a stop sign or even a yield sign. It slows you down then you get going again until the next one.
How many will there be? I have no idea (which also makes me a bit panicky). But I do know, the only thing you can do is tackle them one at time.
At least that’s what I keep telling myself. Just get over one speed bump at a time.
Yesterday, I heard the most beautiful sound. Baby Obi giggled for the first time. A true laugh. Not just one sound, but a series of chuckles one after another. It was magnificent.
This social milestone typically occurs between 3-4 months. Obi is 10 months next week. Some milestones are counted by corrected or adjusted age, but I’ve been told the social milestones are often in line with the actual age. Either way, this laugh has been a long time coming.
Her gross and fine motor skills are just a little behind the typical kid, but her eating and social milestones aren’t even close. They are generally taking 2-3 times as long or more than one would expect.
Does that mean it will take her three times as long to adjust properly to solid food? Three times as long to talk? There’s just no way to know.
It’s hard to really embrace the ‘take it one day at a time’ aspect of a complex syndrome such as Williams. All that ‘unknown’ is overwhelming.
But, as many special needs parents who been here before me have said, when the milestones come, they really do make you stop and celebrate.
Today I’d like to forget that ‘one day at a time’ thing and take 2 of yesterday, please.
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.
I posted earlier this week about an incident that happened while Obi and I were out in the world. If you missed the post, you can read it here. I had interesting responses but the one that has stuck with me the most was a facebook comment saying “he should be fired”.
There was a time when I would have agreed that he should be. But these days I know getting him let go wouldn’t help him in the long run. He’d probably storm home or out with his friends and say that the mom of some “enterdisparagingremarkhere” kid got me canned for like, no good reason, saying I was, like, talking bad about her twerp or something.
He’d maybe get mad and maybe become a little pissed about ‘those people’ or something. He might spend his whole life being a jackass.
I don’t want to see him be fired. I want to see him be better. To learn that the things you say and the way you act means something. They say something about the kind of person you are. And, how you react when someone lets you know what your doing and saying is hurtful? That says a lot about who you want to be.
I’ve found that since Obi’s diagnosis, a number of people have chosen to be better. I know I have. Stickin’ up for people and things that matter to me. Trying to let go of things that don’t really count in the long run. Finding joy in small things. I’ve seen it in other too. People who let me talk their ear off about nothing just ’cause they know I can use a friendly ear right now. People who take a little extra time to ask about Obi and how things are going. People who have banished ‘the R word’ from their vocabulary and their presence.
I’ve met doctors, therapists and program directors who really seem to care about Little Miss, even through they’ve just met. They could just get the job done but they go further.
The listeners and the askers and the language police, they’ve all gotten a little better because of a 28 chromosome deletion.
It’s really quite amazing. Even the heartbreak over the diagnosis I think, in the end, will make me a little better. too.
And jackass. Big mouth jackass. You have a lot of room for improvement. Don’t be mad or resentful or angry or withdrawn. Be more aware of your surroundings. Be mindful of your words. Be a champion for where you work or find new work.
Be a better employee, a better door-opener-for-the-woman-with-the-stroller. Be a better human.
I have been meaning to write a post about steps to take when you first learn about a new diagnosis. I’ve been wading through these deep waters and feel rather hung-out-to-dry when it comes to finding the info you need start helping your little person access the services they need. That’s a long sentence, but not nearly as long as the roundabout route one seems to take when trying to find info about these things.
Today for example, I got a call from one place that offers a certain program telling me that going to a paid program at their center is considered a duplication of service if I’m also receiving home visits from another center (unpaid) and I need to choose which one I want to continue. This after both centers recommended I get on the list for the other program to increase her access to intervention.
Trying to sort all out all the appointments, interventions, programs, services, and therapists is a full time job.
I will be keeping track of everything I learn and will devote a post to my experience. Still, with every province in Canada offering different services, every city having different agencies and who knows what happening in the US, not sure it will be super useful for everyone else.
I think I’m going to pick the Baby Program at the center over the home visits, just to get me out of the house. Fingers crossed it’s the right decision.
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.
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.