Williams Syndrome Wednesday: I’m not special and my brain hurts

by , on
Nov 6, 2013

I’m tired of reading things like “God only gives special children to special parents” and “she couldn’t have come to better parents”  or best “special needs parents are the bravest/strongest/whateverest”. Pffht. My child is special. ALL children are special, but one of mine needs a little more than most. This has very little to do with the kind of person I am or am not.

That being said, I am the kind of person who needs to know things. I’m a why? what next? and when? person. So it comes as no surprise that I struggle a little with the “Why? Because.” aspect of having a child with Williams Syndrome. I have read that WS children are born to parents of all ages, all races, with all types of conception stories. It’s a rare syndrome, but not one that discriminates. It picks the not-so-special parents too.

So in attempt to answer the Why’s I’ve enrolled in an online course called Useful Genetics. In doing so I have learned a few things about myself:

1. I am willing to do just about anything for my little girl.

2.: There are reasons that they tell you to take biology in high school and this is one of them.

3: We are complex beings.

4. Genetics makes my brain hurt.

I wish finding answers to complex questions was easier than Useful Genetics. I wish I was one of the ones who could accept the “special people = special kids” theory, feel all puffed up about myself and move on. And, I still kind of wish I was one of the ones who never has to think about this stuff at all. Or transcription, translation, codons… you probably took biology and already know what those are. Sigh.

I’m not sure I’ll ever know why our perfect Obi came to be the way she is.  But I do look forward to closing the book on feeling like why matters.

Oh yeah, I’m only in the first week.

Williams Syndrome Wednesday: Speed bumps

by , on
Oct 23, 2013

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.

Williams Syndrome Wednesday: A Beautiful Noise

by , on
Oct 16, 2013

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.

Lost…and found. (I’m gonna talk miscarriage so if you’re rather come back tomorrow – that’s cool)

by , on
Oct 15, 2013

Today is Pregnancy and Infant Loss and Remembrance Day. And, I know, nobody talks about miscarriage and babyloss. But today, I can’t help myself.

If nobody talks about how a miscarriage threw their life for a loop how would anyone else know it’s ok to feel the same.

If nobody talks about miscarriage, how do you know some people just keep keeping on, and that’s ok too.

If nobody talks about miscarriage, how do you learn that it happens to lots and lots of women and you’re not alone. YOU’RE NOT ALONE.

My first miscarriage in a word? Sad.

Chest-achingly, life-alteringly sad. I don’t even know if those are words but you get the picture.

It was one of those ultrasound moments like you see in the movies when you think everything’s going along tickity-boo and then it just isn’t.

We walked in laughing and joking about Baby Olive and walked out as shadows.

For the way I go on and on about it, you’d think I lost a fully cooked actual take-home baby. Or was 24 weeks along and could almost taste the final trimester. But I wasn’t.

It was just shy of 10 weeks. Still, it felt like the world caved in. I think the long IVF cycle that preceded the pregnancy didn’t help matters. 75 days of down-regulation before the big drugs started meant I had been working on this pregnancy for 3 months before the actual fertilization took place.

My heart was 100% in. I had created a whole life for us as a family of 4 in my head and then, POOF it was gone.

I did not bounce back. I didn’t ‘get over it’. I had no desire too. And too be honest, I still don’t. That’s not to say that I didn’t heal, didn’t move on. I have done both. But I still mourn the loss of the pregnancy and today, that’s ok. I remember that I had hopes and dreams tied to that pregnancy and when it ended, I lost those too. It still makes me sad.

Now that there’s some time between that moment and the present I can see there were some things gained.  I gained perspective. I gained empathy. I gained the courage to push a little harder to find a new path to where the hopes and dreams waited for me.

We tried again. We lost again – very early on. We were ready to stop. Too much. It was all too much.

And then, it wasn’t. We decided to try one last time. Just to know for sure. Just because I needed to know we were really done.

We weren’t. We welcomed Obi.

At the time, I thought I would never make sense of what happened. This is what I think now.

If Olive had come to be, there would never have been an Obi. Olive had to be lost so Obi could be found. Obi needs us. And we need Obi. This was Olive’s gift to me.

I wish I had known Sweet Olive. I really do.

I’m also glad there’s such a thing as Pregnancy and Infant Loss and Remembrance Day. It tells the world there are people like me who remember lost babes like Sweet Olive. It honours women by granting ‘permission’ to talk. It lets me tell you about Olive so you remember too.

To mark the day, I went out and got myself a little something. The pic isn’t true to colour, as my reflection in the silver gives it a pinkish hue. It’s a little Olive branch ring. It’s just a little token, but it, like this day, holds a great deal of meaning for me.

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If you want to read a lovely article from the New York Times about Pregnancy and Infant Loss Remembrance Day, click here.

If you’re interested in reading more about our IVF journey, head over to invitroveritas.wordpress.com.

If you found your way here because you’re remembering a pregnancy or infant today, I’m so, so sorry for your loss.

Williams Syndrome Wednesday: The Unknown

by , on
Sep 26, 2013

Control. Surrendered.

Expectations. Unrealistic.

Certainty. Uncertain.

Possible. Yes.

Impossible. Yes.

Probable. Not likely.

Likely. Not realistically.

It’s the unknown that makes this journey so challenging. It’s a huge spectrum. There’s no knowing where she’ll sit on it. Though she’s caught up on many milestones, there’s no research that supports this will mean she’ll remain on that curve. She could stall at any time and find herself falling behind again.

Will learning sign language help? Maybe. Will OT ward off physical delays? Perhaps a little. Will the early, consistent exposure to solids help prevent food issues? Could be. Or not.

There’s just no knowing.

And if there’s one thing I hate in this world it’s not knowing.

I realize I need to surrender my need for control and just accept things are just going to be as they are.

I just can’t figure out how to get there from here.

Seat Reveiw: Stokke Newborn Set (for Tripp Trapp)

by , on
Sep 25, 2013

I sound like a broken record whenever I talk about how much I love the Stokke brand. One ‘must have’ on the splurge list (in my humble opinion) is the Newborn set for the Stokke Tripp Trapp.

Stokke newborn set review mommydo

One of the biggest challenges I found with both babes is “where can I put the baby down?” This time around we have the added complication of a 3 year old who thinks ‘gentle’ is a suggestion making our low-to-the-floor options risky choices when he’s around.

I have to tell you we have used this particular item EVERY DAY since baby Obi was big enough to fit the straps – in the first photo I have she’s about 8 lbs but she was in it sooner.

newbornset1

The seat attaches to the Tripp Trapp making it truly an all ages chair.

The newborn set is recommended up to 9kg (if you’re reading from the US, that’s 19lb 13oz) so there’s a good chance your baby will be ready to move on to the baby seat on the Tripp Trapp before you reach the upper weight limit. Wee Obi is still so wee at 9 months and about 15lbs so we still have a ways to go.  It’s easy to put on the Tripp Trapp and remove, and in typical Stokke style, green indicators let you know when it’s safely locked in place.

babysetlock

The seat fabric is washable and straps have plenty of room for adjustment.

newbornsetfloor

For our family, having a nice high perch for her where she can watch her brother, interact while I’m working in the kitchen, be present at mealtimes and just hang out at our level has been such a pleasure.  With her reflux causing her discomfort most of the time in the early months and still, from time to time, putting her flat has seldom been an option. The inclined seat is a godsend – without needing vibration, wiggles or other battery draining gizmos. Our added fabric cover, which she has soiled more than once, washes just as well as the seat fabric and both still look brand new. And, she loves the toy bar. It was a little tricky to attach but once I got the hang of it, it was no trouble. The key is to hook it on from the top first, right at the point where the Stokke tag is on the side. newbornset2

In addition to sitting on the Tripp Trapp, the newborn set has a rocker bottom so you can use it on the floor too!

If you have a Tripp Trapp already, or if you’re considering one, I cannot recommend the newborn set enough. If it’s not too big a splurge… I deem it a ‘Must Have.’

Read all about it here on the Stokke site.

*This review is based on a product I choose and purchased for my baby. I was not compensated for this review and the opinions are all my own. I’m just a big ‘ole fan of the brand.

Williams Syndrome Wednesday: Finding ‘our people’

by , on
Sep 19, 2013

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.

Williams Syndrome Wednesday: The Who does What’s?

by , on
Sep 5, 2013

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.

Sheesh.

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.

Williams Syndrome Wednesday: Heart in my Throat

by , on
Aug 29, 2013

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.

Williams Syndrome Wednesday (Friday Edition): Running Between the Raindrops

by , on
Aug 24, 2013

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.

 

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