Milestones & Genetics – Soundly Sarah

Milestones & Genetics, Motherhood, Respectful Parenting, The magic (in the mess). ♡

She’s got this.

01/21/2021 No Comments

A milestone happened in our house on Tuesday night. M rolled over for the first time! ⁣
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All babies eventually turn over, and milestones are meaningful for every single one of them. I get that. This moment holds something more to me, though.⁣
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O has had gross and fine motor delays for much of his life, starting from when he was very young. PT and OT have been a part of his journey (and mine — there have been many, many, many appointments). On paper, he’s still quite a bit “behind” for his age based on what other kids of a similar age can “typically” do. In time, he’ll get there.⁣
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I have long felt mom guilt over his delays, however. Many a time I have wondered if my well intentioned parenting choices caused them. We didn’t really do tummy time as I didn’t believe in pushing him to be in positions he couldn’t get into himself. I let him be the lead, and I continue to do so to this day. Eventually, we found out he had low muscle tone, and that it was likely the culprit.⁣
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But, despite knowing that, my anxiety doesn’t let me hear it.⁣
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I don’t want that same journey for M. I don’t want those same struggles. So, I keep doing with her all that I hardly did with O… as if in some kind of hail mary attempt to avoid it. But, as hard as I try (and try do I ever), her tolerance for it is achingly minimal. Many a day she makes it happily on her tummy for less minutes that I can count on one hand.⁣
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This, of course, has lead my worries to be convinced we are again on the same trajectory.⁣
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And then on Tuesday she just rolled over out of the blue, as if it was the world telling me to calm the hell down.⁣
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I hear you, world. I hear you.⁣
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She’s got this.⁣
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Happy five months, sweet girl. 💚⁣ ⁣

Mental Health, Milestones & Genetics, Motherhood, Respectful Parenting, The magic (in the mess). ♡

This is what I know.

07/22/2018 No Comments

For the past five or so days I’ve been on a massive cleaning, purging, MAKE IT LOOK GOOD frenzy. It was brought on by some other changes going on in my life, changes that are going to give me more time to invest love into our home, and this endeavour of organizational overhaul was seemingly the best place to start.

(Can I just say that organizing does my brain better than ANY therapy, religion or mindfulness could ever dare hope to? It’s good. So freakin’ good. Like thrillingly good. ANYWAYS.)

As I’ve been tossing, donating, giving away, straightening, fixing, redecorating, focusing on what matters, etc., I’ve had time to think. Time to dwell. Time to ponder and ruminate.

And I’ve come to this conclusion, a conclusion in answer to my last post… if I wish to write (which I do), and have it be from a lived experience, then isn’t the answer simply to write what I *do* know?

And what is it that I know, anyways?

So, to begin (and perhaps one day end…):

I know what it is to be a mom and feel like I have absolutely no freakin’ idea what I’m doing, but, amazingly, things seemingly work out okay and my kid loves my anyways (*pats self on back*) – even if I genuinely have NO idea how.

I know what it is to be on the receiving side of the toxic realm of mommy shaming in this world we live in, and how inexcusable, hurtful and NOT necessary it is, and that I so very much want to spread LOVE to make all the moms I know feel worthy and good enough – ‘cause I don’t always feel that way myself.

I know what it is to be a mom of a child with special needs/special rights, who asks of the world differently than what it’s able to typically give, and the tears and the struggles and the JOYS that come with such an identity of nurturing.

I know what it is to mentally struggle as a mom, and to struggle deeply, bearing fourth my vulnerabilities to the therapists and close friends in my world, always hoping my story gets better… or helps another know that the light isn’t always so dark.

I know what it is as a mom and wife to be blindsided by the addition of a baby and now toddler, and how it forever changes one’s marriage, and how HARD that can often be to help kindle, heal and give it the attention that it needs.

I know what it is to be a mom without a village, or without a real and *present* network of support (except Tina, god bless that woman), and how “without” that can make one feel, and sometimes less than – and the startling realization of being able to physically count on so few.

I know what it is to become a mom at an older age than some, and the shock of a system it can still be at times to put on mommy shoes when for so, so long that was never, ever the case – and the at times *incredibly* trying adjustment it can be to shift into a mothering state of mind.

I know what it is to be a somewhat “new to being a mom” in this very digital world of Facebook mom groups, mom blogs, “overly eager advice sharing people with a keyboard”, and the trials, triumphs and tribulations that have so far come with parenting in a (perhaps too) technological rich realm of information/misinformation.

I know what it is as a mom to want to embrace said technology, but only giving teeny tiny little bits of it at a time to my child, deeply afraid of it being harmful to his growing brain or becoming unstoppable – as technology in my life past was want to do.

I know what it is to be a mom that is guided deeply by the tenements of trust and respect for my child, even when he’s doing what a two year old often does, and how I refuse to shush or distract him from what he’s feeling/going through for the sake of an easier road – even if an easier road sometimes would be much, much easy to bare.

I know what it is to be a mom who is bigger than most, who looks different than others, and who doesn’t always love her body – even if my kid ADORES it, tummy and all (which boggles my dang mind).

And as all moms do, I know what it is to sacrifice. To give up sleep, food, my own needs and my own wants, all for a child who is rested, full, healthy and happy. How he gets there, I’m not so sure, but I’m seemingly doing *something* right.

This is what I know.

Milestones & Genetics, Motherhood

Thank you, thank you, thank you.

06/05/2018 No Comments

Email I just sent to O’s childcare…

“I just wanted to say thank you. When I arrived yesterday, I got out of the car and immediately heard something unexpected. My son’s name was loudly being chanted, “O! O! O! O!”. As I walked closer and through the parking lot, I realized both classes were in the front and nealy everyone was cheering for O as he used his walker. Having never seen him use it (as he’s refused here at home), and seeing all the children cheer him on, I immeiately started crying. It was such a huge and special moment for me. I then came into the gate, got down on my knees, and had my son walk to me (in his walker) for the first time ever. He was so proud, and so happy, and I was so very overjoyed for him. As I hugged him through my tears, one of the 3-5s asked a friend why I was crying, and I believe it was L that answered, “Because she’s happy!”.
And she’s right.
I was profoundly happy, and seeing that moment had just made my week, month and whole year.
Thank you, thank you, thank you.”

*sobs*

💚⁣ ⁣

Milestones & Genetics, Motherhood

My heart soars.

05/18/2018 No Comments

O’s childcare is slowly getting him used to being in the 3-5 room, as he will be moving to it in September (he will be getting a support worker to help him once he gets there, thankfully).

His impending move has slowly meant spending time with children significantly older than him. They all walk, run and are quite tall. Especially when you are stuck in the third percentile and essentially sitting nearly everywhere you go (with scooting being his main form of transportation). Sometimes, it can be scary when the world and everyone in it towers over you.

But, and this is what brings me to feel an overflowing abundance of joy, the 3-5s have started to notice this. In ways of empathy, acceptance and brilliance, they have realized that he needs people on his level. So, yesterday, they began to scoot with him. They sat on the ground with him. They played with him. All in ways where they could equally reach, interact and socially engage.

My heart aches at times to see O’s differences and the special rights that he needs. At times like these, however, it soars.

Milestones & Genetics, Motherhood

Different by a lot.

02/18/2018 No Comments

Raising a child with a significant gross motor delay is different than a raising a child who develops typically. At times, it’s different by a lot.

For instance, what did we do this weekend? We finally reached the point we needed to lower O’s crib from the newborn position as he’s gotten pretty good at coming to a stand (hurray!). His mobile finally had to come down, too. He turned 2 at the end of November.

I want to reach out and bring O to play dates and such, but he just can’t do a lot of stuff other kids his age can. And a trip to the park for him? It looks *dramatically* different than a trip for a typical developing child of his age.

At times, it’s isolating. I want moms to bond with over our kids shared triumphs. But for so much of the big stuff that’s happening to him right now? The mom’s with kids his age went though it a year and a half ago. It’s old news.

Every day in every way I’m celebrating him. He amazes me. But, I’m also worrying, wanting and aching for him. I don’t know if he knows if he is different or not (how can he not when all the children around him at childcare walk?). In a few years I don’t know if that difference will still be there or not.

But right now, I just want him to be happy. To find his people. To fit in. And it feels like the cards are stacked a bit too much against him at such an early age. I hate that I can’t change that. I realize some of this is my worried mom perception, yes. But it’s the part of it that’s not that keeps me awake at night.

Milestones & Genetics, Motherhood

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?