This happy boy. 😍Jaxon in his stander.⠀⠀⠀

This happy boy. 😍Jaxon in his stander.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
If you saw my stories last week, you know it's been a battle to get this piece of equipment: a stander, which is not only universally recommended for CP (and many other conditions), but scientifically proven to aid bone density, prevent/delay hip dysplasia/dislocation, as well as many other benefits.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
In BC, it's not a question of efficacy. Standers are recommended. As early as a year old, we were told to get one. Our province has a "loaner program" where you can get pieces of equipment like this (and others) for free as long as you give it back when you're done. Excellent idea, right?! So great, and this worked well for Axel's walker that we got free of charge from this program.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
However, in Jaxon's case, there were no standers available for him. I went back and forth with the team for over 6 months trying to secure one for him, but the answer was, "Sorry, none in stock!" and.... that's it.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
The recycling program is an excellent first step but @governmentofbc, you damn well need to have a next step.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
In Jaxon's case, there was no next step. It was either get a free one from the gov if it's in stock (it wasn't) orrrrr... you're on your own! To buy a $6,500 stander privately (approx cost with the optional items like headrest/laterals etc he needed). Or - the gov contributes $3200 toward it, but then we would have had to pay the rest ($3300) AND then it would go into that recycling program after... without us getting even a penny of our portion back. How is THAT fair?!⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
In our case everything did work out ok because we were lucky to find this one for an excellent price from another family. But, it lacks the headrest Jaxon needs for optimal positioning. And, we didn't know how to set it up correctly.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
Now, after owning this for SEVEN MONTHS, I have finally secured an appt end of July for it to be professionally fitted for him. So much wasted time... and exhaustion of "fighting" the system. But, I'm glad it's on the books soon.

Why I’m giving up on socializing, even when COVI

Why I’m giving up on socializing, even when COVID is over: a 10 point checklist for new acquaintances 😂

Do know what it’s like to have a child with a ticking time bomb in their head that could go off today, tomorrow, or 10 years from now? And they could die if you don’t notice quickly enough and get to the 1 hospital in the province capable of surgically treating it?

Do you feel guilt every day for the things you didn’t get done? Not the dishes or just brushing teeth. But stander time, PT, OT, speech, vision, AFO wearing, hand splint wearing, feeding, etc?

Do you know what it’s like to get a tough diagnosis or information via a postal letter... several times a year?

Are you able to look at a child that’s not yours without an anxiety attack?

Do you spend more than $25,000 a year on private therapies and medical equipment for your children, and the sacrifices that come with that?

Are you never really able to have fun, even when you’re having fun, because of the weight of the world on your shoulders?

Do you worry about school? Not just if your kid will do well or make friends, but if a teacher will even see them as worth teaching or including? If they’ll get the assistance they need? The fear is not of other children, it’s of the adults that will be in their lives.

Do you have to financially plan for full-time care for your children after you die? Do you know the rates of abuse in longterm care homes? Does that keep you up at night too?

Do you want to go places and see others, but feel frozen in place by fear? Fear of germs every winter, fear of stares?

Do you hate the reasons that bring you there, but feel comfortable at your local children’s hospital? More so than anywhere else?

If someone answers yes to all these questions then maybe we can talk. 😂 But otherwise, I’ll just be over here working, parenting and existing in mostly peaceful solitude. ✌🏼

Happy Father’s Day to the best one there is! @cm

Happy Father’s Day to the best one there is! @cmsmiley 🥰 We certainly hit the jackpot with you.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
From being there for me during a highly complex pregnancy and 3 fetal surgeries, to months in the NICU, countless life or death moments, and all the late night hospital trips since discharge... we couldn’t ask for anyone better.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
Chris spends a lot of time doing physio and OT with the boys, and making it fun. He can do the exercises I can’t just due to strength... and the size of his hands make locking their knees a lot easier! 😂 #thingsmedekparentsunderstand⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
He sacrifices a lot for the boys and never complains. He loves them and each of their unique abilities.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
This isn’t the life he expected as a parent but he has adapted to it with grace, strength and love. And I couldn’t be happier to be his partner.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
And let’s not forget how good of a dad he is to Perry too. 😂🐶⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
Happy Father’s Day ❤️⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
And a Happy Father’s Day to the two men who raised me like fathers (not a gay couple but that woulda been cool), my grandpas. They are both long deceased but they are always on my mind, especially today. ❤️

COVID-19, mental health, isolation, blah blah. I d

COVID-19, mental health, isolation, blah blah. I don't post about it much because I am so divided in my emotions.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
1) I am so freakin ecstatic to not be running to 1-2 medical/therapy appts every single day of every single week. Seriously.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
2) I am so freakin stressed also, because a) the boys need those therapies, and b) while I don't usually have help with the boys, at least pre-COVID there was the possibility of it. Like, if I suddenly had an opportunity for help, or magically learned to trust people, etc. That sort of thing.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
Of course in these COVID times, that is not possible (outsiders in the home). But somehow the illusion that I COULD MAYBE have had help beforehand was slightly better than the reality of now.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
I don't think it's sustainable to parent all day, then work most of the night (in a creative field, when I'm beyond tired, and still try and wear all the other hats a freelancer wears: accounting, marketing myself, sales, lead gen, admin...)⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
(Let's not even talk about all the other hats an adult wears: house cleaning, a social life = NOPE.)⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
It's not sustainable, but it's not a choice.⠀⠀⠀⠀⠀⠀⠀⠀⠀
And it's not just COVID. It's for the next 3-4 years until they start school.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
I could choose to not work, and then my boys couldn't do private therapies. (And we'd prob move into a backyard shed, cuz hey Vancouver real estate.) What would that mean for them? More pain in the future? Surgeries we could have avoided? Knowledge to help them that we would never learn?⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
To me, that is not an option.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
So having this ability, to work and provide this, no matter how unrealistic it is...⠀⠀⠀⠀⠀⠀⠀⠀⠀
Is better than that.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
I have to keep telling myself that every day.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
When my eyes want to close on the keyboard at 1am.⠀⠀⠀⠀⠀⠀⠀⠀⠀
When I feel like I'll never get a new client.⠀⠀⠀⠀⠀⠀⠀⠀⠀
When I feel too depressed to pitch myself.⠀⠀⠀⠀⠀⠀⠀⠀⠀
When I want to give up.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
It is not an option.⠀⠀⠀⠀⠀⠀⠀⠀⠀
Every day is a chance to make the right choice all over again.

I wasn’t going to post anything. I figured so ma

Twins are like having a built-in best friend ❤️❤️
.
Been awhile since I posted to the grid! Just been kinda meh about Instagram lately. And busy! I’m working lots (nights), the boys take up approx 28 out of my 24 hours a day, and I spent most of May doing our taxes if I’m being honest (😅😅😅). #theworst .
Quarantine life has got us into a regular schedule for the first time ever (because of not rushing to random medical appts every day at random times). It’s nice but also a bit monotonous, hence the lack of posts...
.
One thing we’ve really focused on is trying to get Jaxon’s stander adjusted as best we can. We’ve learned so many tips as to how and basically keep making small adjustments every time he’s in it. 😂 It’s all good though. Because the public system royally failed Jaxon in this regard (couldn’t get a stander funded), we bought this one ourselves, hence the DIY approach. We were very lucky to find it used for such a good deal though so not complaining!!
.
This pic isn’t the best example because his head/neck position isn’t great (we’ve adjusted it since then - although he also gets tired holding it up so we tilt him back a bit for a rest), but it was too cute not to post. Axel loves it when J is in the stander as he can pull up to stand with him and enjoys handing J toys and babbling. I think it’s so sweet. 😍
.
Sunday evening is winding down over here and I’m looking forward to winding down with some wine in a bit, and working on my biz stuff. 😊 What are you finishing off your Sunday with?

To be honest, Mothers Day is hard for me. It shoul

To be honest, Mothers Day is hard for me. It shouldn't be - I am grateful I have both my amazing boys here with me, never something I take for granted. Yesterday was lovely - my husband spoiled me so much, and I even got an adorable gift bag as a total surprise. (Thanks @jane.shelin!)
.
It’s hard, I think because the boys were born 2 weeks before Mothers Day (2018). They weren't really "stable" until after June. I didn't want to get too attached, in retrospect.
.
I first met them after my emerg c-section (that came right after my 3rd amnioreduction fetal surgery). I don’t really remember it.
.
I first got to hold Axel at 9 days old, and Jaxon at 12 days old. That was the first week of May. On May 11, 2018, Jaxon had his first hydrocephalus-related brain surgery (a temporary shunt) so I wasn't able to hold him again for awhile after that first time (he was only 29 weeks gestational age at time of surgery). Mothers Day that year was May 13, and I honestly couldn't tell you if I even held Axel that day or not... I don't remember.
.
I remember trying to block out the fact that it was Mothers Day. Kind people wished me well, and I appreciated it, but inside I was so sad. I wasn't supposed to be a mom yet... my first Mothers Day was supposed to be 2019, not 2018. And with two struggling babies living in plastic boxes, I didn't feel like much of a mother. I was an imposter.
.
Fast forward two years and, well, obviously I'm a mom. I don't feel like an imposter anymore. So why does the holiday continue to nag me around the seams a little? I don't know. The memories, I suppose. The memories of a traumatic pregnancy and birth, vinyl pull-out couches, pumping every 2-3 hours, so many close calls of "this could be it, you might want to say goodbye" and alternately, "Are you sure you don't want to pull the plug?" (Not phrased so callously of course.)
.
I think every year I will feel the same: it wasn't supposed to happen this way.
But it did.
Here we are.
C'est la vie.
💚

Perry, our 3rd baby, turns 6 years old today! ❤️️
.
Swipe to see a pic of him when we first met him at the rescue we got him from. He was so shy (and skinny - 30lbs underweight!). All the other dogs ran up to us right away, but Perry circled the room for a good 20 minutes, staring at us. Eventually he quietly walked over, head down, and sat right next to me. I petted him a bit but he wouldn't look at me, only down. He just looked SAD. 😞 We were able to take him for a walk and he was just... obedient. Didn't show much personality, just walked along with us.
.
It wasn't a bad thing, but compared to the personality and a half this guy has now, we had no idea what we were in store for! If you watch my stories, you know he's QUITE the drama queen.
.
Before adopting him, we learned he was quite mistreated in his previous life, eventually ending up at a high-kill shelter in California (where he was originally from) before being shipped up here in a van. 4 dogs came up in close quarters, 3 survived the trip...
.
A few people had looked at him, but decided not to adopt him. (I MEAN HOW COULD YOU NOT? SOCIOPATHS.) He had even been adopted, then returned. 😭We took him home the next day.
.
It was January 17th 2016, and we didn't have any history on him so we made that his birthday. A few years later, our vet was able to scan his microchip which showed his actual birthday of May 1st, 2014.
.
He was so unsure for weeks after coming home. But one thing he was sure of is that he HAD to snuggle with us at night, and he's always slept in our bed. Sometimes adorably spooned, other times annoyingly sprawled out, kicking me in the back and/or stealing all the covers.
.
He soon started showing us his quirky, chatty, demanding ways, and training us to be his forever family and cater to his whims.
.
Later today it's birthday presents, birthday "cake", special steak dinner & an extra fun walk! We love you, Perry, my perfect little 6 year old puppy! 😍

Today (this week?) I am struggling. I just had to

Today (this week?) I am struggling. I just had to get it out. And before anyone DMs me dumb shit like I "should just be glad my kids are alive", yes, human beings - of which I am one - are allowed to have complex emotions. It doesn't mean I am ungrateful for my life.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
If you can't fathom how sadness + gratefulness can coexist daily, maybe try evolving past an amoeba.⠀⠀⠀⠀⠀⠀⠀⠀⠀
...Or take your high vibe toxic positivity and shove it up your ass. Maybe the vibes will feel better there! 😂⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
Anyway......⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
I can't sleep most of the time. I stay up until 2-3am either working, or trying to sleep but reminded of constant worries, or just those FUN memories your brain likes to throw at you during that time of night when you already feel like a sack of shit, right?! So fun, thanks brain.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
I love being able to work from home at night and provide money to pay for the boys' therapies. I love having an identity other than "mom." (Nothing wrong with an identity of mom either, just sayin' it's not enough for me.) But, it's hard to manage. If I'm not looking after the boys, I'm working. Or thinking about an idea for work. Or cleaning (but honestly I hardly ever do that 💁🏼‍♀️).⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
Days like today... are a waste. I've barely done any physio with the boys. Just the basic "stand against the couch", stretches, a few easy things. Cognitive development? Hell, I don't know what I'm doing anytime, but today the most energy I could muster was to read a few books with them.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
It always makes me feel like a failure, but I try to remind myself I can only do my best on such depressing days.⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
Endless advocacy battling the public sector... that never seems to make a dent.⠀⠀⠀⠀⠀⠀⠀⠀⠀
Axel's eating is incredibly stressful. (Tube wean)⠀⠀⠀⠀⠀⠀⠀⠀⠀
Jaxon's reflux is pretty high again.⠀⠀⠀⠀⠀⠀⠀⠀⠀
Appointments (virtual).⠀⠀⠀⠀⠀⠀⠀⠀⠀
Taxes, calls to places, emails, housework stuff, work...⠀⠀⠀⠀⠀⠀⠀⠀⠀
⠀⠀⠀⠀⠀⠀⠀⠀⠀
My tiredness has frozen me in all categories.⠀⠀⠀⠀⠀⠀⠀⠀⠀
I hope it passes soon.⠀⠀⠀⠀⠀⠀⠀⠀⠀
If you're in the same boat, you're not alone. 🆘❤️

A few more snaps from the boys’ birthday on Sund

A few more snaps from the boys’ birthday on Sunday! 😊
.
We got outside for a bit to test out their new trike. Axel loved it. J loved the movement but needs a bit more trunk/neck strength to be able to use it so hopefully soon. 😊
.
Went for a walk. Did cupcakes and surprisingly Axel ate the entire thing! Then took a drink by himself for the first time ever... I guess cuz it was so dry lol. We are still using his gtube for fluids so this was a big deal. He hasn’t drank since but that’s ok. Small steps. Jaxon was not a huge fan of touching the cupcake haha. .
Later it was birthday jammies and a pic with me (last one). How did they get so big all of a sudden? 😭
.
Hoping their year ahead is full of joy, discovery, growth and curiosity. ❤️❤️

Home
Topics
Our Story
Resources
Contact

Explore

Cortical Visual Impairment

Guides

Toys for Children with CVI (Cortical Visual Impairment)

January 26, 2020

Copyright 2019 The Fighting Irish Martins / Michelle Martin. All rights reserved.

Disclosure
Privacy Policy
Contact
Media Kit