Williams Syndrome Wednesday: I want to be…

by , on
Aug 15, 2013

A few weekends ago I attended the national conference for Williams Syndrome and they had a talent show for the individuals with WS one night.

There were all kinds of acts, stand up comedy, a family of 3 young children that wrote and performed a song about the loving nature of the WS kid of the family, some “just stand up and sing” acts.

All in all, there were some impressive numbers – these kids were real crowd pleasers – but one in particular stood out to me. A young boy, maybe 5 or 6, stood up and sang “I want to be where the people are” from a certain Dis_ney movie about a little red-haired girl with a tail who lives under the sea. I’m not sure if the rest of the audience had the same gut-wrenching reaction as me – the parent of the youngest diagnosed child at the conference- but I really felt the moment, and still do, weeks later.

If you’re not familiar with the song, it starts out “I want to be where the people are, I want to see, want to see them dancing…” and goes on to, at one point say “Up where they walk, up where they run, up where they stay all day in the sun, wandering free, wish I could be, part of their world.”

Since learning of Obi’s diagnosis and researching WS, one thing that has stood out for me it that individuals with WS understand that they have a syndrome that sets them apart – that they aren’t quite like everyone else. This has made me wonder if Obi will feel ‘different’ as in “we’re all individuals with differences who make up this world” or ‘different’ as in “I’m an outsider and no matter what happens I’ll always be on the outside looking in”.

Hearing this young boy sing (quite well for his age, I might add) about how much he wants to be ‘part of their world’ very nearly broke my heart in half.

I’m willing to bet he doesn’t grasp the meaning of the song at that level. He probably likes the movie, likes the tune. I really hope that’s all it is. I really, really hope, at 6, he’s not already feeling like an outsider. Because if I project that thinking onto my Obi and fast forward 6 short years, that may just be too much for my heart to bear.

Williams Syndrome Wednesday: Sleep

by , on
Aug 8, 2013

We are now officially in the thick of the “ongoing sleep problems” often associated with Williams Syndrome. For us, it seems to be manifesting in ‘switched days and nights’ where she will sleep long stretches, sometimes for 4-5 hours, but only during the day. At night she is alert – sometimes 4-5 hours.

No idea how to make her switch.

I did get great sleep this weekend. I attended the Canadian Association for Williams Syndrome (CAWS) family conference. I got a great deal of information – perhaps too much. And left feeling both understood and overwhelmed. Still, it was worth the trek. I’ll talk a little about what I took away from each of the sessions in coming posts but have to say, I wish there had been a sleep session.

I fear this will be an ongoing topic as other parents have said it took till 4 years and beyond to really see an improvement. Pheeeesh. I’m tired just thinking about it.


Williams Syndrome Wednesday: Missing Milestones is Messy

by , on
Jul 25, 2013
missing milestones Williams Syndrome Wednesday

williams syndrome missing milestonesMissing milestones is a messy business. Obi is behind. This certainly comes as no surprise. She’s a preemie. She has Williams Syndrome. She’s been doing it from the start. Or not doing it, I suppose – whatever ‘it’ is on any given day.

But each new milestone not met is another little stab to the heart. I have a few different groups of Mom’s that are part of my regular social circle. Most of their babies were born in and around the same time as mine – or around when she was due, anyway. Some have newer babies. And one by one these babies move through each of the stages. Check, check, check. And then I find a new baby to look to as being Obi’s “age” (now these babies are about 12 weeks) although they are, at that age, already bigger than she is.

I can’t help but compare – it’s in my nature. And I’m missing the feeling of ‘I totally get where you’re coming from’. And, if I’m being honest, I miss being the first one to check a box (Bubble was quick to meet all his early milestones – check, check, check).

Obi’s OT was here last week and assessed her at meeting half of her 4 month milestones. All her little friends have long passed her by. Some are crawling. Some are rolling with intent. All are laughing and grabbing and babbling and, and, and. And we’re going to a hearing test, having OT come to the house, looking for other interventions. We’re missing the summer days under trees at the park, missing play dates and coffee dates. We’re missing typical and normal and expected.

I’m missing the feeling that everything is going to be ok because things are going as they should.

I’m feeling uncertain, facing the unknown and fearing all sorts of things that may or may not come to pass.

I’m missing the days before we ‘knew’ it was Williams Syndrome, even if I ‘knew’ it was something.

I’ve read a lot about the joy and love and happiness that WS kids bring to the world and I’m not yet sure when that part starts.

Right now, aside from my beautiful little peachy pie, all I can see is what we’re missing.

Williams Syndrome Wednesday: Well I’m still at the airport

by , on
Jul 18, 2013
mommydo still at the airport-featured

mommydo-still-at-the-airportLast we I mentioned briefly that I have some thoughts on “Welcome to Holland“. Dana Nieder (uncommonfeedback@gmail.com), over at Uncommon Sense talks about it too, in her post Amsterdam International. 

Well that’s all well and good, but from someone who is still at the airport, here are my 10 thoughts. I reserve the right to feel differently about this as time passes.

1. I have been to Amsterdam International. As a hub, people leave there all the time to head to other places. It’s a kick ass airport. Schiphol. I won some money in the casino there. I have fond memories. The experience of learning my child has a lifelong syndrome is nothing like the experience of skipping my boozy self through Amsterdam International.

2. I’m pretty easy going. If I was planning a trip and ended up somewhere else, I’d be a little put out but I’d go along with it. I’m all for ‘off the beaten path’. At this time, I feel much more like I was supposed to go on a a fabulous journey (one filled with hard work, granted…a volunteer-cation perhaps?) and instead I just had to stay at work. There are rewarding things about work – I know that – a job can be very fulfilling. But right now, instead of big bowls of pasta (in the Italy example) or Windmills (in the detour to Holland) all I see is my suitcase on the bed, piled high with research and forms and contacts and what have you. It’s not like being stuck at an airport, it’s like being stuck at customs.

3. There is a lot of waiting. It’s not like your flight has been redirected and you skip off the plane somewhere else, are warmly greeted and you’re free to make your way out of the airport. I feel like they said you’re going to Holland but the airspace is closed so we’re going to land in Italy, put you on a bus and a train and a donkey and eventually, (no idea when, you’ll just have to wait and see, time will tell, be patient) you’ll see some windmills and you’ll know you’ve arrived. The diagnosis is the only definitive answer you get (if you get a diagnosis at all).

4. You have a lot of places to be. In ‘Holland’ there is a ton of bureaucracy. And there is no one to translate it. And you’re on your own. It’s even like the airport has no one working in it.

5. Both these essays leave out second time travelers entirely. If you’ve already been to Italy, and now you’re suddenly in Holland, you can’t help but compare the 2 trips. And let’s face it, Italy is a better trip. Not to say there won’t be ‘great moments’ in Holland, but it’s not gonna be the same. That being said, there’s no guarantee that 2 trips to Italy would be equally awesome.

6. I’m guessing some people never get over it. I don’t think it’s any way to live. I don’t think anyone should dwell on it. But I suspect some people don’t come to appreciate the tulips. I know that’s not me and yet I worry that it is. I worry about a lot of things. The fact that I can’t speak dutch is so minor it’s almost inconsequential.

7. I seem to be the only one who got off the plane. Where are all the other tourists heading to Holland? It sure is startling to find that no one else is walking down the skywalk and your luggage is the only case on the conveyer. It’s very lonely in Holland. Wish you were here.

8. Everyone’s experience of Holland is different. This adds to the feeling of isolation.

9. Did I mention the waiting?

10. Sometimes you need to seek out the people you trust enough to share that your trip, the one that you were so excited about, that you’ve dreamed about…that you’ve pursued tirelessly, is crappy. Because it is crappy some days. It ain’t all windmills and tulips. Most feel the need to be really chipper about the news that you are not where you’re meant to be. They don’t want to be sad. They don’t want you to be sad. If they act happy, then everything will turn out great. Heck, they say, “I’m sure you’ll find yourself in Italy in no time”.  But guess what? Chances are when you are first sharing the news, they are sad. You are sad. Everything will turn out some way or another. It’s ok to say “Right now, this change in plans, this flight redirect? It’s craptastic. And I have no idea what I’m going to do about it. So I’m gonna sit here on this plane and figure out how to make the very best out of flippin’ tulips and windmills.”

hmmm, upon re-reading this…I should just stay on the plane a while longer.

Williams Syndrome Wednesday: Not all news is bad news

by , on
Jul 11, 2013
Williams Syndrome baby no heart issues

A little update on the little miss. Obi met with cardiology today and she doesn’t have any of the heart trouble often associated with Williams Syndrome. This is outstanding, especially when you consider that heart issues are generally a defining factor in the disorder. I, of course, hope that the lack of cardio involvement will translate to a less severe manifestation of the syndrome but I know the two are not related. Still, a little sunny news goes a long way these days.

It’s amazing. When you suddenly find yourself in uncharted territory, the way you see and process the information coming at you completely new too. For instance, if you’d told me when I was still carrying Obi, that I would go to see a cardiologist, one of a whole slew of specialists tracking my soon to be born baby, and I’d been pleased to be there and delighted that she could be followed at our local hospital I would have looked at you like you had two heads. Which part of ‘seeing cardiologist’ is good news I would have wondered. Isn’t the fact that you’re there at all bad news.

Everything has changed.

I met with a dear friend today, one who is also a parent to a child (2 in fact) with special needs. She asked me if I’d read “Welcome to Holland”. In fact she said “Has anyone tried to jam that Welcome to Holland shit down your throat yet?” The fact that she asked me, and more importantly that I knew what she was talking about and was able to ask if she’s read some of the responses made me acutely aware of how the old days are gone forever, replaced by a brave new world. One where news that used to sound bad is far better than real, REALLY bad news. None of which I received today. I’m grateful for that.

If you don’t know the ‘holland’ thing, read here and here and next week we’ll discuss that. Because, I have a lot, and I mean A LOT to say about f’ing Holland.

I’ll leave you with a photo, because if you got here by googling Williams Syndrome and just want to know what the baby looks like so you can see if she looks like your baby, you’re gonna need to have a look at the cuteness. Williams Syndrome Baby no heart issues

Williams Syndrome Wednesday: Related

by , on
Jul 3, 2013

Obi is not sleeping well. At least not at night. seems to be related to digestion…or maybe teeth. If it is digestion, I’ve read some WS kids have worsening digestive symptoms at 6 months, so could be WS related. Or, could be typical baby stuff.

Who knows? I do know I look at every little thing and wonder if it part of the WS or part of life. EVERY little thing. I’m exhausted already. I hope this part gets easier.

Williams Syndrome Wednesday – Hanging in there

by , on
Jun 26, 2013

As in, we’re hanging in there. Because really, what else can you say?

When you’ve just received news that your perfect little princess is, in fact, not perfect after all, that she’s got a genetic anomaly that affects a whole slew of major systems in the body, that the future you’ve imagined is not to be, that it brings real honest-to-goodness health concerns, social stigma, endless appointments and a healthy dose of uncertainty about the future, what the F else are you supposed to say? That you sit in your parked car and weep? That you wake up in the morning and just for a minute before you really come to you forget and then you remember and your heart breaks for her and for you all over again? That you have no f-ing idea if you can handle it?

You can’t say that. It means you have doubts about your ability to parent. It means you admit to others that you’re not certain everything will be ok. It means that you put the diagnosis before your still-perfect-to-you-daughter, It means you’re weak. And you can’t be weak. You need to be strong and then stronger still – for your baby girl and your family and your husband and even more strong for your self.

If you’re not strong you might find the diagnosis takes over. And you can’t let that happen. Because you know if it does you’ll lose your little girl to labels, you’ll lose your marriage to uncertainty and you’ll lose yourself to your new advocate role.

So you need to hang in there. I’m hanging in there. What choice do I have?

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