Mother’s Day and ramblings

Yesterday was my third mother’s day, and it’s probably been the toughest one yet. It’s no secret that I’m struggling – and really what else do I do on this blog except complain? – but jeez I have to wonder if there is ever a point where all of this gets easier.

Mother’s Day is a day meant to celebrate our mothers and all that they do for us. I know that a lot of people think it’s a stupid holiday, a “Hallmark holiday”, whatever. But the thing is, that damnit we need that one day a year where society tells our kids and partners to pay attention to us.

I am really not that demanding…..truly, all I want is a card “from” Noah and maybe a nap, but I always feel like even on the day that is supposed to be about me, my feelings are put on hold like they just don’t matter enough. On top of that, the day in general feels like a punch to the gut when I look at Noah’s peer group.

Noah’s baby friends are putting crayons to paper, saying “I love you” and “Mama”/”Mommy”, maybe picking a flower outside. They are doing daycare crafts of macaroni necklaces and sticker tiaras, and singing songs. Besides the fact that Noah isn’t in daycare…….I don’t get to experience any of that. I’ve never been called “Mama”, never given a hug and a sloppy kiss, never been woken up by a little person climbing into our bed. And that hurts, it really does. Maybe that’s part of the reason why even though it’s my third Mother’s Day, I still can’t connect to the title of “mom”. Really, when I think of terms to describe myself, the terms are “old”, “tired”, “frustrated”….I don’t think of myself as a mother and that’s the hardest part. I know that it isn’t fair to put that on my child, and I’m not saying that it is his fault that I feel that way, but it’s just another way how the brain damage Noah suffered at birth has fucked up our entire lives.

The sun is shining and my neighbor’s kids are playing outside. Noah should be out there with them. I should be yelling at him to not run so far (I live in a condo complex, the front yards are all connected and there’s no barrier to the streets or parking lot), telling him to share, stop hitting, whatever. We should be potty training. He might be learning the letters of the alphabet a little, even just by memorization.

My therapist pointed out something to me a few months ago that made a lot of sense. When we took Noah off life support, we mourned the loss of our son. I shut myself off emotionally from him, in an attempt to safe guard myself. But when he decided to NOT pass away, it was almost like a whole other little boy was born. We mourned and grieved (and are still grieving) the loss of Mr Baby Boy Hiebert and all that he was supposed to be, but we then had to adjust to and learn Noah James Hiebert, the baby with severe cerebral palsy. (Hopefully that makes sense).

This whole experience is so much like wading out into unfamiliar waters. I read “What To Expect When You’re Expecting” from cover to cover because I truly had a textbook pregnancy. I had purchased “What To Expect: The First Year” but I didn’t even crack the spine because even from the moment we got home from the hospital, everything that was going on was far beyond anything a book could tell us. Even though I now have a couple of support groups in place online, brain damage is so varied from child to child that it’s not like I can really learn what to expect from the other people in the group. I suppose that’s true of any toddler but really, I look at Noah’s birth club and although their skills vary (as will happen in a group of 80 kids), they generally all follow a similar skill/development arc and direction. It’s hard because I really can’t join in almost any discussion re skills or development. There are some  “picture challenges” (where someone offers a picture theme for the week, for example, one a few weeks ago was yoga poses) that I can’t really participate in either….I want to, so I offer ideas for “challenges” that Noah can actually do, but then I feel bad because I don’t want them to feel bad and I don’t want them to feel like everything should be adjusted so that Noah can participate, when we are literally 1 person in a group of 79 other kids that can do the challenges perfectly fine.

I guess I am just tired of having to adjust our lives around what Noah can and can’t do. I just wish it could be easy…..like I could just head to the park with a water bottle and some easily transported snacks. We don’t go to the park because Noah can’t do anything and he doesn’t enjoy himself.

But we did get an awesome new stroller last week and although I messed up my ankle a few days ago, it’s getting better so hopefully Noah and I will be able to go on walks again and he won’t hate them. Hopefully.

I don’t just feel sorry for myself, I feel sorry for Noah and everything that he’s missing out on. I know that I whine a lot on this blog but I really don’t know where else to put those feelings. I’m disappointed and frustrated by the hand that life has dealt us, and I always feel like an “other” to everyone else….it gets very isolating because we can’t really do playdates, playgroups, playgrounds, etc. I don’t know why I ever thought it would get easier once he got older, but I think that a big part of that was that I was holding out for that elusive “two year” mark, when in my mind Noah would be sitting unassisted (therefore establishing that he could walk as an adult) and maybe crawling. I truly never thought that at 2.5 years old he would still be unable to do anything for himself. Maybe that was extremely naive of me to think that way. Probably.

People just don’t get it. And that’s okay, albeit frustrating, because they shouldn’t get it. No one should have to go through this shit and understand even an inkling of what it’s like.

I was watching a show on Netflix and there was an episode where the main character is deaf and she goes into a cooking class where she sets something on fire because she didn’t hear the timer go off. One of her classmates was like “why do they have the special needs kid in here” or whatever it was (implying that she was holding back the whole class), and that made me CRY because I was THAT person growing up. And I know that there is going to be THAT person in Noah’s class too, and that kills me. I am truly ashamed of my thoughts/words towards the special needs kids in my classes and I wish that that ignorance wasn’t such a common thing.

Now that I’ve majorly digressed….

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Mother’s Day 2013

This post doesn’t have a title.

I’ve been having a really rough couple of days.

I’ve been thinking more and more about the fact that the only reason I’m still here is because of Noah. I realized that ever since Noah was born I have lamented over the fact that I can no longer just take off, leave, and do whatever I want. Maybe every new mother feels that way but it seems to cut a bit deeper for me.

My fight or flight instinct kicked in once we realized that Noah was in trouble. I stepped up to the plate because I had to….I had to make the calls to the social worker in Edmonton, had to coordinate where we were staying once we got there, had to track down my nurses to give me paperwork and get my doctor to come in to discharge me so that we could leave the hospital. Once we got to Edmonton, all of the other medical decisions we needed to make were presented to us…..more often than not, Caleb deferred to me. There tends to be an overwhelming belief that because the mother carries and births the child, she is the one to make the decisions.

Over the last two years I have had innumerable people tell me that I am strong, that I am a good mother, and so on. It makes me wonder if people ever say things like that to the fathers as well, or does that only apply to the mother because of societal norms – that it’s all on her. The thing is that I don’t feel like I am strong at all. I’m truly only here because I was pretty much forced into it…..over the last year or so, the only way I can really describe what I’m feeling is, “claustrophobic”. This has been especially true over the last 6 months in particular. Today I realized that that claustrophobic, wanting to “climb the walls”, feeling is actually my flight instinct kicking in. I’ve been fighting for so long…..more often than not I think about how on earth I am supposed to deal with all of this for years and years to come.

I want to leave, I want to run away. Those feelings were especially strong a few months ago when I was having some serious suicidal ideation…. but now that I’m finally in therapy and on medication, things are definitely better and I don’t feel quite as crazy. Over the last few days my shitty sleep patterns have returned and it brought back those desperate, trapped feelings. I don’t know where to put those feelings when I get like that. I post about them occasionally on a couple of FB groups I’m in, but it makes me feel like a drama queen….and I usually delete them in the cold light of day because I’m embarrassed.

I feel like I am expected to carry this ginormous weight and at the same time I need to organize and coordinate how to move my life forward. A friend of mine that I graduated with and started college at the same time as (before I left when I got pregnant at the end of my freshman year), FINISHED college this week. She is a TEACHER. That blows my mind…..how am I old enough to have peers who have actual careers? I’m a bum who stays at home all day while she is out being a contributing member of society and shaping young minds. That’s crazy to me!

This week I managed to completely forget about a biannual appointment with Noah’s physiatrist….and the hip x-ray that I was supposed to get him in for before that appointment. That probably doesn’t seem like a huge deal to anyone, but for me….it’s the first major appointment that I’ve completely and totally dropped the ball on. I have missed ONE other appointment, which was a PT/OT/ST visit when Noah was under a year old, which was rescheduled to the next week (so, no big deal). Now I’m embarrassed for missing that appointment, mostly because coordinating, making, and attending appointments is all on me and it’s just another mark of how much I fail at being a mother.

Most people say that their children are the best thing in the world, that they don’t regret them, etc. I feel like a horrible person because if I could go back and slap 19-year-old-Me upside the head, I would. This is terrible. That young, naive bitch had absolutely ZERO clue what she was getting herself into. I say it now to other people but I wish I would have known the truth myself….babies are NOT like in a Huggies commercial.

My sister is really making me angry because of her refusal to take responsibility for her own sexual health….and I think that a huge part of that is because I regret having a baby when I did, and perhaps at all. She is 19 herself now…..I know that she’s an adult and it’s her business and blah blah blah but honestly I really wish that she would look at my life and learn from my mistakes a little.

I worry about the future, Noah’s future, and what it looks like. Will it turn out that he outlives both Caleb and I? Will he pass away from a random illness next year? Will he ever walk, talk, feed himself?

My flight instinct is telling me to run….but every time I think about it, I also think about that little Noah face and it pulls me right back. I hate all of this so much that it’s beyond words, but I don’t want to leave Caleb or someone else with all of that burden either. So I have to keep pushing…and pushing….and pushing….

In so many ways, Noah saved my life and gave me something to live for……but in so many others, this whole experience is killing me.

This face is all I have.

This face is all I have.

Weight of the World

It really is a tired analogy but it is my truth. This week has been the heaviest of the heavy, possibly since the week Noah was born.

My sister has some deep mental health issues that have come to light this week, along with some risky behavior that could potentially hurt her for the long term.

Along with these issues come the fact that I, perhaps foolishly, got our parents involved. The aftermath has made me regret doing so, even though it probably still is the best decision. It’s just irritating that doing so has added onto my burden rather than diminishing it in any way.

My mother is someone who apparently can’t pick up on anything to do with nuance, tact, or tone. This isn’t me being mean, it is just fact. She doesn’t seem to understand how to phrase her questions and comments in a gentle, non-judgmental way. She doesn’t just drop a subject even when people tell her not to go there.

More importantly, it pisses me off that I sent her all this information about mental illness and she just doesn’t get it. She doesn’t get that there is usually not one exact cause of depression, that a little exercise typically doesn’t “heal” depression and you can’t just “snap” out of it. It’s like she believes every myth about depression, ever. And she seems to ignore whenever I try to tell her differently.

Maybe I just have “super understand-y powers” because I too am trying to deal with severe depression. I don’t know. In any case, the fact of the matter is that I just cannot carry all of this shit by myself. I can’t.

I started therapy a few weeks ago and anti-depressants on Sunday. I’m trying to make myself better. Meanwhile, I still have to force myself to get out of bed every day because there’s a little person depending on me. The antis make me hate life….I probably sound like a whiner but constant nausea (along with digestive issues, exhaustion, and apparently an inability to drink Coke/caffeine or eat normal portion sizes) is not a good time.

Adding to that is of course the “normal life” aspect of being a SAHM. This damn house that I am constantly behind on. Bills and money stress. Trying to remain social and keep in touch with friends (I usually fail the most at this). Caleb and I’s relationship.

Keeping on top of my “special needs life”, including coordinating appointments and therapy for Noah. His therapists and workers have picked up on my struggles in this area and now communicate with me exclusively via email.

Now having to add this new burden, of trying to help my sister and rein in my mother’s ridiculousness.

I just can’t handle it. I am drowning. I am not strong enough to carry all of this and I don’t know what to do about it.

I convinced my sister to go to a mental health walk-in today without me and that seemed to be zero help as they said that she seemed to be doing it for other people….like are you fucking kidding me? I’m trying to help her by sending her to a place that has people who can better identify her issues and send her to the right place and they are telling her that she doesn’t want it enough. WTF is that. I get that they can’t help her if she doesn’t want to help herself but she has crippling anxiety and literally won’t help herself. So now we’re back to square one, I guess? Where I carry everything? Where she’s still doing the risky behavior because I wanted them to refer her to therapy so that she’d have better strategies to bypass that impulse?

I am not a mental health expert. I am not qualified to help her move through and deal with her issues. She needs a professional.

I am emotionally exhausted. I am just so. effing. tired. I can’t take any more bullshit.

I can’t carry everyone.

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Randomness

Sometimes I think about just shutting down my blog. I suck at keeping it updated, some of my earlier posts are sort of embarrassing, I can’t think of anything beyond negative things to talk about…..it’s pretty ridiculous.

But I suppose that’s just where my mind is right now, and where it’s been for almost the last year now. It’s difficult trying to pull myself out of that hole, especially when I live in a world where every day is pretty much the same. We don’t really go out because Noah hates people and noise. He isn’t hitting any milestones so I can’t even really share funny stories or big triumphs or anything like that.

A blog is supposed to expand and grow….but when your life isn’t really going anywhere it’s hard to keep it fresh and interesting.

It’s 3:45 am. I’m awake because I’m stupid and I was watching a shit-ton of music videos on YouTube for absolutely no reason. I get obsessed and distracted with random things, and I feel like I must watch or read ALL THE THINGS before I can get on to something else (ie, sleeping). It’s hard for me to grasp the fact that the internet will be there the next morning, that I can leave the tabs open and close the laptop…haha.

It always seems like once 3 am rolls around…..I get crazier than usual. Probably just because I am overtired, but it’s almost like I turn up the ridiculousness. More often than not if I blog it’s in the middle of the night. It’s when I can’t turn my brain off, when I can’t make the thoughts stop swirling around my head….at least during the day I can quiet them. But once it’s the middle of the night and I’ve caught up on all the shows on the PVR, I have nothing else to distract myself from everything that is trying to drive me insane.

I get into arguments with strangers (ok, I do that during the day too), creep people on Facebook, find myself in the “weird” part of YouTube (you all know what I’m talking about), google random things, whatever.

I started seeing a therapist finally, she wants me to take sleeping pills and anti-depressants. The problem is finding someone who will prescribe them to me. My family doctor pissed me off with the mental health referral fiasco a few months ago and I never want to see him again. Caleb wants me to see an actual psychiatrist so that they can prescribe me medication. But is that going to be another several months before I get my shit together and somehow see someone who can actually prescribe me something? The whole thing freaks me out but I know that at this point I’m letting my anxiety and depression control my life and that isn’t a great way to live. As my therapist said, living in this “low” long term can really screw you up….and I’ve already been living in this for 2 years, if not longer. Have I already ruined myself, in that I’ll never be truly happy again?

I’m supposed to be going back to school in the fall. Possibly getting married in the summer. Hopefully having another baby within the next 2 years or so. Is this permanent low that I seem to be in, going to hold me back in life indefinitely? I can’t even make a phone call to ask about booking a location for our wedding, for pete’s sake. I can’t concentrate hard enough to keep up with BLOGGING (seriously, my Dashboard is full of half finished posts), how on earth am I going to handle extensive amounts of school work? Am I going to fail at my course just like how I failed last time?

I just want to be better.

I remember the dark hole I was in before I got pregnant, and I remember feeling like Noah saved my life. I just want to shed this mask, to stop being so angry about everything. Because that’s basically what it comes down to….I’m angry. I’m angry that there’s no where to really put the blame on what happened to Noah. I’m angry that he has to struggle through life attempting to do things that we “ables” take for granted every single day. I’m angry that people just don’t GET IT, they have “stunt births” that are INSANE because they want the EXPERIENCE. I quite literally want to slap them all in the face….don’t you realize what you are gambling with? It makes me angry that I did everything right when I was pregnant and yet I ended up with a special needs child.

I honestly can’t tell you if I’ll ever stop being angry about that because it’s something that I think about almost literally every day. I don’t know if I’ll ever be able to work past this raw pain that I feel every single day of my life. This red hot mixture of disappointment, frustration, grief, what have you.

More than anything I wish that I could go back and feel the same way that I did when I was pregnant….like the world was my oyster and anything and everything was possible. I had so many dreams and wishes for that little boy growing inside of me, and for myself as well. I remember the first day that I felt him kick, and then the next day when I saw Caleb’s face as he saw his son for the first time on the ultrasound machine…..those were possibly the happiest days of my life. I wish that I could harness that feeling and dispense it on my particularly bad days. Because the truth is that I will quite literally never feel like that again…..the next pregnancy will be rife with paranoia and worry, I can already tell. I will never feel that young, that optimistic, ever again.

I may only be 22 but in so many ways I feel ancient. I’m tired of all of this baggage that I have to carry everywhere, you know? It’s wearing me down. I miss being 19 and all the shiny, naive optimism that came with it.

I have recently become obsessed with bow headbands. If I want to be really really honest and psychoanalyze myself, I think it’s mostly because they make me feel young again. I want to feel like I don’t have any responsibilities, like I don’t have what feels like the weight of the world on my shoulders.

In any case, I’m going to try to get some sleep now. I will attempt a photo dump later this week sometime.

Noah does tummy time.

Noah does tummy time.

“He’s My Son”

He’s My Son – by Margaret Hall

You lie there. Unaware of the panic that now surrounds you.
Your head bobs with each compression. Yet still you lie there.
You make no noise, while inside I am screaming.
You have not yet been introduced, yet Daddy’s heart hurts with love.

I turn to him now, and wait…
The silence is unbearable. I wait…
A single tear runs slowly down his face. Yet still, I wait.
I cling to hope and faith and pray that soon the silence will stop.

You are fighting so hard, I can feel it.
You already bear the scars of a courageous war.
You are beautiful, perfect.
Don’t give up now.

Brave warriors join you in your battle.
They heard your silent calls for help.
They take you from this fear filled room
And surround you with warmth and your first glimmer of life.

Comforted by the machines that now support you,
We adapt to our new role as spectators of your fragile beginnings.
The rise and fall of your chest is addictive to watch
Not daring to look away, for fear it might stop.

Your leg starts to shake. My heart misses a beat.
You shake all over now, and an alarm sounds.
Once again your silence is heard
And the brave warriors return with unquestionable vigilance.

They fill your precious body with healing liquid
And you return to your silent post.
Days go by and slowly but surely your enemy shows signs of defeat
The rise and fall of your chest is fighting against the machines
And you inhale your first scent of life.

We are full of emotion as our skins touch for the first time
We cry and imprint this memory in our souls
We stare at this work of art, taking note of every line,
Not wanting to forget a single moment.

There is cryptic talk of damage to your brain
I am sure that this must be wrong
It feels unreal and we look at you lying there so innocent
How can this angel be so perfect and have so much that is wrong.

The tears fill our eyes as your life is unveiled
And we hurt deep inside for the loss of a boy we once dreamt of,
But here is this child so handsome and strong

Our purpose is clear, no more questions need asking
He is perfect, he is needed and loved, and most importantly,

…. He is my son. ♥

Noah, 7 weeks - February 2011

Noah, 7 weeks – February 2011

HIE is a description, not a definition.

Noah has HIE.

Noah has cerebral palsy.

These terms aren’t used in a derogatory way or to limit him.

They are used in the same way that I would use the following:

Noah has brown hair.

Noah has hazel/brown eyes.

Noah is 23 months old.

Noah is my son.

None of those DEFINE who Noah is.

Noah is a very sweet, sensitive little boy.

His father is his best friend.

There’s a spark behind those beautiful eyes of his that reveal wisdom beyond his years.

He’s been through hell and back.

I may refer to him as having HIE, but that doesn’t mean that he isn’t so much more than that.

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Waiting

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My life consists of waiting. Waiting in doctors’ and specialists’ offices, hospital waiting rooms….waiting to find out just how much Noah’s brain injury has affected him and our hopes for his future.

We sit next to other parents, just like us. We’re united by a distinct commonality. We know what it’s like to wait. Sitting for hours next to a tiny glass isolette, only the beep beep beep of our baby’s and his or her neighbors’ machines for company. We know what it’s like to wait for hours for a 20 minute doctor’s appointment. Waiting to hear results.

We share glances and smiles at each other. Even though our children may have a different diagnosis, we can relate to each other on a different and deeper level than just a random stranger walking by on the street. I am always curious about their story. What brought them there? But it’s rude to ask. So instead I look away.

The days that we spent waiting for Noah to pass away were absolute, pure torture. 3 full days, we spent in a psychotic limbo. We passed out rather than intentionally falling asleep. We only left the room to use the bathroom down the hall. Thankfully our families brought us food, otherwise we probably wouldn’t have eaten. We expected every breath to be his last, every slight twitch to be a sign that his little body was shutting down.

I bring that up only because today (and tomorrow) we are at the Stollery. While we were waiting for Noah to be done with his MRI, I went to the cafeteria by myself to get us breakfast. Since it’s mid-November already, everything is Christmas-fied. This is the first time we’ve been back at the hospital when it’s been all decorated up and “cheery”, since those awful 7 days we spent there shortly after he was born. I already have a hard enough time without it bringing me back so specifically. All I needed was “Mistletoe” by Colbie Calliet playing over an intercom and I probably would have burst into tears….I was having a hard enough time just walking to the cafeteria!

Tomorrow Noah has an EEG. We’re going to visit his tree again and the NICU too. I have a new picture card thing to put on the “Graduate” wall. It’s going to be hard. Smelling those smells, hearing the familiar beeps.

Maybe I’ll see some fellow HIE parents, just starting on their journey. Maybe I will see some who had the same news as us. Perhaps I’ll recognize that look in their eyes, that look that says that they think they’ve completely cried themselves out, and that their world is crashing around them. In some ways they are right. No matter the outcome, their lives are changed forever. Only time will tell if they will walk out with empty arms or a full carseat. That diversion from their previous path will teach them more about life and love than they ever thought possible. They have many more tears left to cry.

But for now, all they can do is wait.

Mental health & life struggles.

This one may be a short post, but no promises.

For those who know me IRL or via a couple FB groups that I am active in, you probably already know that I struggle with depression and PTSD that resulted from Noah’s birth (aaand I just remembered that I have written about it here too….but hey if you haven’t been a long time reader you may not know that. But I digress). Some days are better than others. The middle of the night is usually the worst. If I get upset about something after around 10 pm, I probably won’t be able to sleep until the early-late hours of the morning (ie 3, 4, 5 am.

Last week Noah went to my SIL’s to give me a much-needed break. It was lovely and I greatly appreciate how amazing she is to offer and to take him off our hands for a few days.

And for me, it was great. I actually felt the best, emotionally, that I have for a very long time.

But then Noah came back and life returned back to normal. Feeling like a slave to Noah’s moods and having to stay in basically all the time because it’s not worth the effort or gas money to go anywhere. Realizing that I now hate birthday parties because Noah can’t handle them. I do believe that he has some sensory issues, and as such I have to avoid places like parks, public pools….anywhere that there might be a lot of children, activity, and/or NOISE.

It’s so incredibly frustrating. I always thought that I would put my child into swimming lessons from a young age. That may never happen. I never thought that I would have to avoid something like a PLAYGROUND. I thought that that would be our haven.

I know I talk a lot about the “how things should have been”. I know it’s repetitive. Really, I’m getting sick of it myself. But I can’t get away from it.

Noah’s baby friends are no longer babies. They are children. They are running, potty training, speaking in full sentences, etc, etc. It blows my mind, really. We went to a playdate yesterday, with two little boys who are only about a month older than Noah, but it was like night and day seeing them all together. The host also had a 2 month old baby….holding her, she was seriously stronger than Noah is. It’s hard to believe how very far behind he is, but yet so obvious once you can actively compare him.

Noah is still very much a baby. He is completely dependent on us for everything. It breaks my heart. People say that “they grow up so fast” but seriously, I wish that Noah would grow a little faster already…..let me tell you, that newborn phase gets old really fast. It feels like Noah is permanently stuck in neutral, so to speak.

Then today I finally tried him out in his new standing frame, and it was a disaster.

Attempt #1. 

It didn’t support his head at all, he was whipping it all over the place. He is wearing his AFOs, it made his right foot twist in. His legs were basically straight. It just looked so incredibly uncomfortable.

So I tried it again.

Attempt #2.

I put a neck pillow behind him and released the gate so that his knees could bend. It looks much more comfortable but I know that the gate is supposed to be closed.

I posted these pictures to my HIE group asking for help, because I have no flipping clue what I’m doing.

And then I did a full on, hysterical ugly cry.

Because I am so frustrated and so, incredibly tired. And I’m heartbroken that this is our life.

It should NOT be this difficult. My son should NOT have to be strapped into some metal contraption in order to STAND, for pete’s sake.

THIS is what we are going to have to deal with for the rest of his life. Headaches and heartbreaks.

I am bitter and ANGRY, mostly at myself.

I was and continue to be so incredibly naive. I constantly defer to the medical professionals that come in and out of our lives. Every single time one of them makes a mistake or lets me down, I think, “Olivia, you need to do your own research”. And I literally never do.

This stander is bullshit. It is NOT what he needs. It’s not doing anything for him. It’s not teaching him how to stand, or how to use those muscles. It’s holding him, in a slightly different position than he is already always in. He’s already enslaved to the limitations of his brain injury, why am I putting him in this CAGE to further limit him?

In a prone position, he lifts his head, moves it side to side, moves his legs in a crawling motion. In the stander, he can’t even move his legs and bounce like he will if he is not encumbered.

Look at those pictures. That looks so incredibly unnatural that I want to scream.

Why can’t we just be normal? Please. I’d rather be complaining about my son being the resident biter at daycare than having to deal with all of this.

I did zero research on standing frames beforehand, and the physiatrist didn’t give us any options. Talking with my HIE group, I asked them to post pictures of their children in standers and there was one in particular, her son is about a year older than Noah and also lives in Canada. He too has level 5 spastic quad. His standing frame looks AMAZING compared to the one Noah has….the angle is adjustable, it has a table in the front so that he can play.

I have no idea if we’re now stuck with this stander for 2 years. All I know is that I’m made at myself for YET AGAIN going along with the medical professional without doing any of my own research. Really, it should have been a huge red flag when the company that fitted it had to add a steel bar and a pad at the back for his head and neck. That should have been a huge indicator that it wouldn’t be a good fit for him. But as per usual, I trusted those who are my societal superiors. He’s a DOCTOR, what the hell do I know?

 

I just coming back into the blame game. I blame myself for not speaking up more while I was in labor, not asking questions, I didn’t even Google the potential side effects of Cervadil. I completely walked into the situation with my eyes shut, and it screwed me over.

I let the guy talk me into spending an obscene amount of money so that Noah could have HBOT…..when there is no data supporting its use for children with cerebral palsy. He sounded like he knew what he was talking about, and I still feel like I was very much taken advantage of.

And now….I don’t even know if we’ll be able to get a different stander. The one we have was custom fitted for Noah. We didn’t have to pay anything for it only because we make under the income cap so we are applicable for the cost-share exemption program (which I am grateful for). AHS doesn’t have an employee directory but I wanted to email his PT and OT the pictures I posted above. Noah deserves better.

 

I have been waiting since July 15th for a psych referral. I. NEED. HELP. I put it off long enough in the first place, and here it’s been almost 4 months and I still haven’t heard a word? And TMI alert, I want to get an IUD so I need an OBGYN referral. I made the request for it that same day and still nothing either. I could have easily conceived a baby in that amount of time, come on! This is unacceptable. There are drop-ins available for mental health professionals but seriously, I can already tell that I’m going to need long term care. I believe that I’ve been depressed since my teenage years but refused to recognize it. Now I know. And I want to get a handle on it. Please help me help myself!

Overall I am grateful to live in a country with universal health care, but sometimes it is a real bitch. I’m tired of waiting, psychiatrist! Call me, please!!

 

Thanks for reading. I’m sorry that my blog tends to be a ball of negativity.

In other news, THIS happened the other day. He sat unassisted for over 2 minutes with very little wavering back and forth. Hopefully you will understand how big of a deal that is. :)
Unassisted sitting, 22 months. <3