Just over 3 short years ago, our second child was born. She was born small having suffered in-utero growth restriction and the first of many diagnoses she would receive was “Failure to Thrive”.
She wasn’t getting enough nutrition and wasn’t growing as she should. It was heartbreaking. From there, she was developmentally delayed, had hypotonia, was socially delayed, tongue tied, had mild pulmonary aortic stenosis, was found to be missing 28 genes on chromosome 7 consistent with a diagnosis of Williams Syndrome. She had high calcium, poor mouth control, vision issues, hearing issues, digestive issues, sleep issues, suspected neuro issues (never confirmed), more feeding issues, ear issues, gross motor delay, sensory issues, repetitive behaviours, speech delay and so on. It’s a lot.
Despite her Williams Syndrome, many of these challenges are resolving, most importantly her cardiac issues, and of course, she no longer has failure to thrive. In fact, she’s a wonderful little girl who steals hearts and sings with gusto.
It’s me that’s not thriving.
When I entered the NICU three years ago, I clicked into survival mode. I did everything I needed to do. I learned everything. I met with everyone and I faced every challenge with my eye on the prize. To ensure she will reach her full potential. To do this, I had no choice but to put some things on hold. But now…
But now I’m pretty sure “survival mode” isn’t something anyone can survive forever.
So this year I hope to open the door to some of the things that I left behind the day the small one was born.
Don’t worry, I’m realistic. Ensuring Alma reaches her full potential is no less important today than yesterday. And I know that you can’t actually “make time” or “find time”. There are only so many hours in a day. Still, the rest of us need to reach our full potential too.
So here are my personal hopes for 2016:
I want to read a book.
I want to spend time extra time exploring the wonder of the world with my boy.
I want to knit something. Sew something.
I want to go one place I’ve never been. Maybe it’s a corner of the city. Maybe it’s a country. Just somewhere.
I want to eat food that makes me feel well, and strong and that tastes really good. I hope to have seconds, maybe thirds.
I want to experience one of those amazing moments that you couldn’t describe, no matter how hard you try.
I want to do one thing that’s daring, one thing that’s scary and one thing that I probably shouldn’t.
I want to raise a little hell.
I want to get better at something.
I want to laugh till I snort.
I want to feel my body moving and my heart pumping and my mood lifting.
I want to get to know some people better. Sit down, make I contact and talk about them for a change.
I want to breathe. I want to see something that takes my breathe away.
Life is short so this year, I want to do more living.
I want to stop surviving and start thriving.
So there’s this problem we’re having. It’s kind of like when a baby isn’t sleeping through the night… except that by ‘not sleeping through the night’ I mean “baby won’t close her eyes for any reason, like not even to blink between 11pm and 2,3,4,5 am”. The time on the clock is variable but the effect is the same. We live in a zombie like state. We’re 4 weeks from one year of not getting any freakin’ sleep.
We have devised a system whereby one parent stays on the main floor with baby and weathers the sleepless storm of tears, kicking, fussing and blood curdling screams and the other sleeps upstairs in the bed…the sweet, sweet bed.
There are many things wrong with this system, I know. But we were barely surviving and this was the best we could come up with.
The question is whether the sleeplessness comes from her WS or from a series of bad sleep habits that she’s picked up along the way. And I suppose, in addition to that…does it matter?
I know a lot of kids with WS have sleep issue, but then, many kids without do to.
I spoke to my Doc and she suggested abolishing the bad sleep habits first, then see where we’re at.
Huh. Never thought of that. (of course I felt kind of dumb on the phone…)
I fear I’ll spend a great deal of my parenting career with her trying determine where something is the syndrome or just a typical kid thing. It’s hard not to blame WS for everything. I’m still a little mad at it.
So I’m gonna make a conscious effort to see Obi first and the syndrome second. To embrace the ‘just because’ before the genetics. Sure, for true medical issues I will remain super vigilant. But for the rest, for the quirks and questions, I want to parent ‘who my child is’, not ‘what she has’.
I suspect there will be many times when the line is a little fuzzy but really, after not sleeping for a year, everything is fuzzy.
If you do, you need this book:
The Artisan Bread Machine by Judith Fertig
It is DEF a MOMMYDO favourite. If you have the machine, but not the book, try this simple but delicious white bread recipe from page 24.
Blue Ribbon Bread Machine Bread – 2LB loaf
8tsp granulated sugar
1 1/2tsp instant or bread machine yeast
1 1/3 cups water
1/3 cup vegetable oil
4 cups flour
2 tsp salt
1. Add sugar, yeast and water to the bread pan. Let stand for 10 minutes or until yeast starts to bubble.
2. Add oil. Spoon flour on top of liquid. Add salt.
3. Select the Basic/White cycle and Light Crust setting and press start.
NOTE: As with all bread machine recipes, it’s important to add the ingredients in the right order.
Oops. The salt and the yeast need to be separated by the flour.
Live and learn. Live and learn.
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.
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.
…for 7 hours straight. Said no parent. Ever.
I was gonna post a picture of the great castle we built with (for) the boy today. I used to collect them in my younger days – so we were working on a big 800 piece set from my youth. Yep, I was gonna post a pic of the castle except IT’S STILL NOT DONE!
Hub and I switched off on and off building building duty for as long as most people consider a day’s work and didn’t manage to complete the $*#%ing thing.
And we need to wake up in the morning and finish. Because the only thing worse than how we felt about not getting it done was how the boy felt about us not getting it done.
I’ll file this one under “Bright ideas not to be repeated”.
Little Miss sat unsupported for a short time today…maybe 2 min. After spending time with a Mommy group filled with typical children yesterday and having a little boo-hoo over how hard it is to watch all the kiddies moving so quickly through sitting to making moves towards crawling (or already crawling) and now starting to pull themselves up, to say I was delighted was an understatement.
Of course the camera was no where to be found and phone battery was dead, but I’ll snap some pics today if she’s interested in a repeat performance.
As I go through this journey I’m constantly amazed at how I can feel overwhelmed and come down with a bad case of the poor-me’s/poor-her’s and then, the very next day, be so amazed.
It’s a real up and down, one-day-at-a-time thing isn’t it, life.
Today is an up day. Here’s hoping tomorrow will be the same.
After posting that I wanted to make something the other day, I decided I needed to start small.
I love to bake, needed to entertain the boy and had a fancy cake mix I’d bought on sale at Williams Sonoma. Super! We were gonna make cupcakes but couldn’t find the damned liners, so settled on a 2 layer, 8 and 9 inch cake.
Like I said, the mix was snazzy, with confetti in the cake. Perfect for the boy. So we baked it up. Mostly I baked and he whined about when he could eat it. FINALLY it was ready to come out of the oven to cool. The 9 inch popped out perfectly. The 8 inch? Not so much.
Shit. No super cute 2 layer cake for us. Boy still whining. Cake cooling. Patience dwindling.
Decision made – single layer cake. Add sprinkles. Let go of vision of what was meant to be. Eat cake.
Even though it was short, it was pretty friggin’ delicious. So Williams Sonoma – the mix was yummy. The price (on sale) was worth it. The little candies becoming glue that attached to the bottom of the pan and resulted in the cake-breakdown were too much for my greasing and flouring, but only on one layer. Weird. If I’d spoken to my sister yesterday, I would have some fab sprinklely cake pops to show you. Didn’t even think to make that mess into pops at the time. Then my husband ate a sizable amount of it.
At the end of the day, when bad things happen to good cake, you still have good cake.