A Day to Remember What You’ll Never Forget

by , on
Oct 15, 2015

Today is Pregnancy and Infant Loss Remembrance Day.

  
I remember our first loss like yesterday. Not one to keep quiet about things most people don’t like to talk about, I wrote this post the day the learned we’d lost Sweet Olive after IVF #2. 

If you share this experience, I hope you haven’t had to suffer in silence, and I am so very sorry for your loss.

Williams Syndrome Wednesday: The Joy Edition

by , on
Nov 28, 2013

I wrote an entirely different post. But when I read it, it was well… sad. You see, it was this time last year that things started to go south fast in my pregnancy. Warning signs lead to tests lead to hospital bed rest lead to more failed tests lead to worry about baby’s safety lead to emergency c-section lead to Christmas, New Year’s, my birthday in the NICU lead to home on RSV season house arrest lead to a laser focus on Obi’s delays lead to tests lead to diagnosis lead to more tests, therapies, adjusting to the new normal.

It’s been a year filled with the unknown, worry, disappointment, grief and challenges. It’s been a very, very long year. And when you stop there, it sounds like that’s all it’s been.

Which is far from the reality. As with any new baby, there have been all these tough times, but there has also been unimaginable joy. I suppose this is also the real lesson I’ve learned as a parent of a special needs child. It is true that the lows are lower. The hard times are harder than with a typical child, there’s no question. But these don’t take away from the splendour or the majesty or the joy.  I think they probably make it all a little bit sweeter.

The calendar is triggering all these memories of how things went from what I expected when I was expecting to this giant uncharted sea that is Williams Syndrome. But the calendar is also signalling my most favourite time of the year. It’s easy to stay at the pity party and wallow in the woe-is-me’s, but that’s not gonna help anything AND it’s going to mean next year I’m looking back at this year as another one that fell flat.

So to try and move past what happened last year and embrace THIS season, I’ve decided to stuff my advent calendar with little reminders of all the magic that happened this year. To actually count my blessings – 25 of them – and take 25 days to reflect on what a wonderful year it’s been. Really, learning my child has Williams Syndrome is just ONE thing that happened. This also happened:

1. Our infertility journey came to an end when we welcomed the sweet baby girl that completes our family.

2. We were fortunate to spend our NICU time in an incredible environment and never worried for one minute about the love and care Obi received.

3. Although Obi ultimately didn’t become a ‘nursing’ baby, the time we spent trying was filled with sweet bonding moments.

4. My eternal newborn still has that sweet baby smell, at almost 1 year old.

5.  The boy has blossomed as a loving and nurturing sibling.

6. Obi’s first smile very nearly melted me into a puddle of goo and every one since has been glorious.

7. I have learned are really good people in the world whose sole purpose is to ensure children shine.

8. I got to experience the feeling of holding a new (day-old) baby again when there had been many days I thought I never would.

9. People have been gentle with me when times have been rough.

10. My business is fine despite taking a backseat.

11. I realized how grateful I am that we live near Sick Kids.

12. Obi saw many specialists but so far has no concerning health issues.

13. Obi laughed and it was magical.

14. I learned that small babies stay ‘babies’ longer – and I love babies.

15. I took a stand against something and found others stood with me.

16. Through Mommydo, I came to feel I am not alone.

17. I got to take long walks with a sleeping baby in a stroller.

18. I got to watch a lot of great TV while a baby did not sleep at night.

19. I made new friends that I would never have met if things had been different.

20. Obi sat for the first time and I thought my heart would burst with pride.

21. I made nice with my bre.ast pump and have met the goal of 1 year of bre.ast milk for my little miss – a huge accomplishment.

22. I brought a tiny human into the world and she has changed me and all those around her for the better.

23. I learned what unconditional really means.

24. We gained a whole new ‘family’ in the Williams Syndrome community.

25. With Obi’s arrival I experienced sorrow, but not as deeply as I experienced JOY.

Police Themed Birthday Party

by , on
Nov 26, 2013

A few weekends ago we hosted the boy’s Fourth Birthday Party. Given his current obsession with Lego and Police, choosing a theme wasn’t an issue… As I posted a few days ago, the theme started to come to life with these great wanted posters from 733blog.

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Even the littlest Crook got in the spirit!

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But what’s a party without snacks? I created these great Lego head Marshmallow pops that I found the tutorial for here. I used a half mini marshmallow for the head and cake decorator gel for the face.

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Now you can’t have a party without cake. And I stole the show by putting actual working lights from the boy’s Playmobil Police car onto the Police Car cake I baked.

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I used the Wilton car pan, and took some inspiration from here. I used the Durable Chocolate cake recipe found here and it worked very well.

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As I can’t seem to decorate a cookie to save my life, I ordered some Lego Cops and Crooks cookies from the amazing Dolce. So cute and so, so delicious.

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Then we made these super cute loot bag tags.

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A huge shout out to Oaks n’ Acorns for being a super swell venue and to my brother-in-law who really helped out a ton. All in all, the party was a great success, despite the boy saying he only wanted to have grown up parties from now on. We’ll see if that’s the case when next year’s party time rolls around.

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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 – As Long As She’s Healthy

by , on
Oct 9, 2013

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.

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.

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