Milestones & Genetics – Page 2

Tired but thankful.

10/07/2017 No Comments

We’re staying in the hospital tonight as O is in recovery from one of his surgeries. Here are the highlights thus far:

The baby O is sharing his room with is ten months and potty trained. My brain is so confused.
O was up both nights from 9:15-2:45, and then off and on until 6. He kept thinking he had just gotten up from a nap when the nurses needed to do stuff to him. We are… tired as hell.
BC Children’s Child Life dept. is a magical place of flashy lights and dazzling distractions that are like crack cocaine to an upset toddler.
There is no greater hell than sharing a hospital room with a frequently upset baby when your own baby is frightened by crying. No. Greater. Hell.
We have half a room this time instead of third a room! Despite the other stuff, this too is magical.
Nurses that get some stuff can wait and that sleep matters most are my favourite. Nurses that feel they must do everything for every box on the clock (after you just spent an hour and half getting your child down) are not my favourite.
For O’s next surgery we get to be in the new BC children’s hospital ward that has all individual rooms! Hurray!

That’s all for now. We’re headed home soon. I might try to smuggle the giant morphine drip machine home with us. For serious.

Signed,

Tired but thankful.

Milestones & Genetics, Motherhood, Respectful Parenting

He is who he is, and I am who I am.

02/08/2017 No Comments

Since the day he was born, I have parented O based on two principles: respect and trust. They are small words, but they are profound words. Words that in times of uncertainty and unease, have helped lead the way… and in times of strength and joy, words that have been enthusiastically celebrated.

Respecting and trusting a two month old, a six month old, a fourteen month old, a whatever month old — it looks a lot like this. It is fundamentally different than the ways many babies and toddlers are raised, yes, but it is beautiful. I haven’t been perfect about it (when it came to getting O to sleep, I /had/ to let some of it go), but it’s meant so much to me to try and be with it’s premises as much as I could.

This means that I didn’t do tummy time with O until he was able to discover it on his own. I honoured his timeline, and I had the mantra of “in-time”, NOT “on-time”, on repeat in my head. This wasn’t the Olympics, and he’d eventually find where he needed to be. Heck, come the start of kindergarten, he’d be running around and causing a ruckus just like every other kid there. There felt no need to rush it.

It slowly became apparent that O would be taking the long way around as a means to development of his gross motor skills, however. At six months he rolled into his tummy. At seven months he rolled onto his back. He is still a bit funny about doing both, however. At 12 months he mastered sitting on his own (yes, you read that right). And just today, at 14 months, I witnessed him get from his tummy to a sitting position for the first time ever. I was so, so, SO happy to be there to witness it, surgery bruises and all.

Now, and because you’re probably wondering, he has yet to crawl (though he does some fierce, exploratory circles on his tummy), yet to stand and yet to walk. And you know what? It’s taken me a long time to say this, despite how deep my intentions were in respect and trust, but it’s gonna be okay. It really, truly is.

As anxiety is wont to do, there have been times aplenty that I have struggled. Did I cause his delay? Should I have pushed him anyways? Is it my fault he currently has the gross motor capabilities of a 6-9 month old? Should I have listened to the naysayers who told me differently? Have I been stubborn and foolhardy for my gain alone? Insert doubt after doubt after doubt.

Do you know how hard is to to watch a kid half your child’s age do things that they cannot? Or the heart wrench at yearning for their freedom and independence of movement as they howl in frustration for the umpteenth about not being able to reach something just outside their grasp? The wanting of so much more for them, and for them to be like all the other toddlers in that last play date you attended, but knowing you are powerless. Insert worry after worry after worry.

But you know what?

I listened to him. I honoured his choices. I let him guide the way. I did what was in my heart. I was lead by a gentle, slow and patient love that believed tremendously in respecting and trusting him. And as he now gets extra, special help from various specialists so that he can learn more, I continue to do all of those things everyday and always. This is no ones fault. It is simply how the cards laid.

He is who he is, and I am who I am. And at the end of the day, week, month and year, we’re gonna be okay.

Mental Health, Milestones & Genetics, Motherhood

How can we ever really know?

04/19/2016 No Comments

O was born with a couple of things that make him different than the typical baby boy. Some of these things will require surgery in a years time and one is something that cannot be seen by the human eye.

This unseen part about him is chromosomal. To be more specific, he has a large deletion in his 3rd chromosome. This deletion may be the reason for some of the other, differing, things about him — or it may not be. It’s hard to say. All that is known right now is the unknown, as his deletion is considered rare to the geneticists at BC Children’s and it hasn’t been seen enough to know what it could imply health wise, now or later, if anything at all.

In an attempt to understand how this came to be, be it from D and I or how our DNA combined, blood work was done on us. As of a few days ago, I now know that I too have this large deletion in my 3rd chromosome and that I passed it on to O in the womb.

I’m writing this here, in this space, because I need to better understand what this means to me. I need to voice it, to put it in text, to make sense of it. Selfishly, I need to be told it will be okay (even if the irrational side of me disagrees), again and again, on top of how many times I’ve already been told as much. I’m in the midst of scheduling a follow up with the geneticists to be told the same. Everyone is hinging on the fact that I seem to be okay, same with my other family members who may or may not have it, and so O should be okay too.

But how can we ever really know that? Am I okay? What about later on? Have I missed something my entire life? Was there something I should have questioned but never did? Is my son going to suffer because I didn’t? These are huge, unknowable, worrisome questions — I know. But how does one continue on as normal when they find out that something is missing in the base of their DNA? In the base of what makes them human? And that they’ve passed it on to their son, with repercussions entirely unknown?

Nothing I can do can change this, I get that, and I know that I need to be positive. I have to be. Not just for me, but for O and D. But how?

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