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: Bifocal

by , on
Aug 1, 2013
Bifocal Williams Syndrome Wednesday

Williams Syndrome Wednesday Bifocal BlogI’m struggling a little. I feel challenged by the need to be present in the moment and simply love and care for wee Obi and the need to learn and understand and be prepared for any and all possibilities for the future. I need bifocal glasses.

Today, for instance, I dropped off a cheque for the 0-2 infant development nursery school program we’re starting in September (one morning a week/parent and child/typical and special needs kids/developmental program including sensory play/various therapists participate throughout the year to assess and determine areas where further intervention may be beneficial/finally meeting other special needs parents/gives us an ‘in’ with a key provider of service for special needs kids) and at the same time, got on the waitlist for their preschool program.

This prompted the discussion about what we’re going to do for daycare when the time comes. This TIME, for my DH is coming sooner than later, as here in Canada, the first birthday normally marks the transition to care. He envisions her in some kind of mainstream daycare with extra services if necessary.

I, on the other hand, imagine this transition will happen closer to 2, in a part time setting, more likely than not in a program geared for kids with special needs to maximize early intervention and set her up to (hopefully) mainstream in school.

Of course, neither of us have any idea how any of this might play out. The hours I’ve spent thinking about my version of the plan are based on exactly NONE of the information necessary to actually make a decision. His version included a daycare we’re not on the list for (because we aren’t on ANY lists and in this city, no list means no spot). Of course, all of these hours are time not spent just enjoying her and the boy, cleaning the house, planning outings or even (in my case) working to support whatever childcare situation we end up in.

I find this to be the case with just about everything that will happen in the future. I cannot help but obsess about every little thing even though I know we can’t know how things will go until Obi gets older and we see where she sits on the Williams syndrome “spectrum”.

I am trying to focus more on the present and to be ‘here’ for her and the boy. It’s really challenging though. I suppose it’s all part of the shock that comes with any life altering diagnosis. The lives altered include so many more than the one who’s received it.

The idea that I need to focus on plan for a life that will continue long after I am gone is also mind blowing, and depressing and stressful and sad. Yet another reason to pull my focus back to the here and now.

Little Miss did well with her OT today. The therapist said there was progress! That she could see that we were working. That babes who don’t have parents who actively work on the skills don’t reap the benefits of the early intervention. And that there’s no telling just how large an impact this can have on her potential in the long run. Nearsight: Doing well. Keep up the good work.

Farsight: Potential, long run, improvements, what does that mean? Who will she be? Will she need daycare? Private School? A different public school district? Will she work? Find friendship? Love? Who will care for her when we’re gone…

Focus. On. The. Here. And. Now. Be. Mindful. Of. The. Future. But. Do. No. Get. Caught. Up. In. And. Endless. Loop. Of. What. If.

Bifocal.

This is my new mantra.

Wish me luck.

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.

Nursery story Part 1: Shame on me

by , on
Jul 11, 2013
nursery before picture

This is one of those moments where you do something totally embarrassing to try and use the moment to shame yourself into finishing something.

As you are aware, baby girl made her early appearance in late Dec of 2012. As she wasn’t due till the end of January, I figured we had all of that month to complete her room.

Yeah, that was a super bad idea. So then she came along and everything baby – all the hand me downs and rescued from the garage items, and pulled out of various storage items and anything else that was hanging around the house before the holidays got tossed, and I mean TOSSED into her would be space.  And well…let’s just say if we had a spare kitchen sink, that would have been thrown in there too.

I was sourcing things and buying things and making plans, but the putting of the room together seemed daunting. And for good reason… (here comes the embarrassing part)Image

This photo was taken a few months ago. There have been some changes since then. I’ll tell you more about them in coming posts.

So follow along over the next few installments and watch as I transform that DISASTER into a room that looks much more like some of the inspiring photos I found on pinterest.

You can see them here http://projectnursery.com/projects/romans-giraffe-nursery/Image

Here: http://www.apartmenttherapy.com/noelles-grey-coral-nursery-my-room-172107

Or here. http://img0.etsystatic.com/000/0/5975667/il_fullxfull.332311626.jpg.

I haven’t really done any “home decor” posts before so bear with me as I try and capture what I’m up to.

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

I dreamed a dream in times gone by

by , on
Jun 11, 2013
I dreamed a dream Williams Syndrome

I dreamed a dream williams syndrome

When you learn you’re having a baby girl, regardless of the misgiving you have about the day-to-day ups and downs in the pregnancy, your mind wanders to what the future might be like if it all works out. You get to have a baby girl, a daughter. You get to have tea parties and dance classes. You get to help pick out prom dresses and wedding dresses. You imagine grand babies. You have a dream for her, and for you and her. You have a dream for yourself as a mother and a mentor and a friend.

You have a dream your life would be so different from the one that you find yourself in when you get the call that your followup from genetics has been scheduled for months down the road and you’ll be seeing a different doctor and be followed by a different clinic.

In that life, the one you find yourself in, you freak the fuck out because followups and clinic switches must mean there are results and if there are results, then why the hell do you have to wait 2.5 months to hear them. And then you go all momma bear and ‘make some calls’ which can be loosely translated to “lose your shit” on a number of people.

At the end of these “calls” – which take place over 3 long days, you find there is suddenly an opening for Tuesday, 5 short days away, with the original doc you saw to discuss results, that are, as you suspected, in. And, after that gets arranged, you find your phone is ringing, again. This time it’s the doc himself, with apologies for the mix up and the offer to give you the results over the phone – something, he tells you, they don’t usually do – but given your level of stress over the situation, (ie – because you seem to be losing your shit), he is willing to do in this instance. Of course, you say “yes, thank you” and he asks if this is a good time and if you’re sitting down and you say “yes” and “yes” and then as he speaks, the dream you dreamed of your future, the dream of your charmed life with your charmed daughter (the dream you knew in your gut and your heart was a long shot but you chose to dream just the same) ends. It dies. And a little piece of your heart dies. And a piece of you, as a mother, dies right along with it.

Just like Fantine in Les Mis says, now life has killed the dream I dreamed.

Genetic Testing – A needle in a hay stack

by , on
Jun 11, 2013

When you set the ball in motion to look to genetics for answers, you learn the answers you seek are like finding a needle in a hay stack.

I posted about our meeting with genetics here.

We knew they had suspicions as I mentioned in the post I linked to, and I started to live as though their suspicions were true.

Still I waited for the follow up with bated breath. I am one of those people who needs to know once and for all.

In her own time

by , on
Jun 11, 2013

When you have a preemie, the one thing you hear a lot is “in her own time.” As in “she’ll start nursing in her own time.”, or “she’ll smile in her own time”, or “she’ll make I contact in her own time”, or “she’ll have alert periods in her own time”…you see where this is going.

Obi wasn’t acting like a ‘typical’ newborn. She was slow to gain weight, could latch to nurse, but couldn’t transfer enough milk to make a meal. You had to wake her up to feed her at term, 2 weeks past term, two months past term. She wasn’t smiling at 4 weeks corrected, 8 weeks corrected, 12 weeks corrected. She didn’t make eye contact. She didn’t follow sounds. She wasn’t doing things in her own time (own time my ASS I wanted to tell everyone who tried to convince me to just wait it out)…she wasn’t progressing at all.

So, like every crazed sleep deprived woman who spends hours on her own watching a sleeping baby willing her to wake up, I turned to Dr. Google. Now, I am not suggesting this is an activity which is good for your health or your sanity. There is some crazy scary shit out there. But I needed to find some sort of explanation, however unlikely. However crazy sounding. However unpleasant for me.

I came up with a short list of conditions that fit with her behaviour and, on March 26 went to doc to discuss the possibility that “In her own time” was not the whole story. I believed there was more to it and at that appointment, the doc agreed. She felt that Obi had some ‘soft markers’ and perhaps digging a little deeper would be a wise course of action. She didn’t necessarily agree with the top idea on my list, but marked it down and suggested casting a wider net. We were referred to genetics and were sent for a few other tests as well.

Finally, I thought, we’ll get some answers. I am the kind of person who believes knowing is better than not knowing. Even when knowing changes everything.

In My Gut – Something wasn’t right with my preemie

by , on
Jun 11, 2013
preemie in NICU

preemie baby in NICU williams syndromeAll through my pregnancy with Obi (dubbed Obi because she was the result of a single remaining embryo from an IVF cycle, and that embryo at the time, made me think of Princess Leia’s plea to Kenobi in holograph form in Star Wars – “Help me Obi Wan Kenobi, you’re my only hope.”) I had a gut feeling something wasn’t right.

At every turn there were people telling me it was ‘just this’ or ‘just that’ but the pregnancy just wasn’t the same as the 39 weeks I spent brewing my boy.

She arrived at 34 weeks 4 days, remarkably growth restricted, in distress, via emergency c-section for being breech. As they were prepping me, my water broke, which reinforced the idea that she needed to come out – NOW.

My tiny 1690g girl entered the world with a team of specialists standing by but surprised all by letting out a tiny shriek and breathing room air from the start.

She headed off to the NICU where all preemie babies go and I headed off to recovery and there was lots of discussion about symmetrical IUGR and placental problems and best case and so on. She was tiny and I was in love and she was healthy and all that, but I couldn’t shake the feeling that she just wasn’t like the boy.

I asked a million questions but everyone had a logical answer.

Everybody who cared for her saw each of my misgivings as a ‘good sign’. And I started to hush my gut and chalk it up to the trauma. And she got a little bigger. And I put a little more distance between myself and the unpleasant pregnancy and the 25 day NICU stay and life as a preemie mom. I started to let my guard down. I told my gut to shut the fuck up. And I just loved my itty bitty baby girl. As it should be.

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