I’ll be honest here. In the simplest terms, I’ve been really, really sad lately. Down about Noah, Etc (as in, everything with Noah and his issues). I can’t even express how deep this goes; I spend every waking minute wanting to scream and cry and break things and just RUN AWAY, get away from the GIANT EMOTIONAL MONSTER that is HIE and everything that it’s brought us.
I withdraw from the world. I have a hard enough time as it is sustaining friendships, adding layers of grief and frustration doesn’t help anything. I stay up late pretending that I am a normal person, reading random blogs, watching YouTube videos, pinning wedding ideas, cruising Etsy/Kijiji/eBay, etc for wedding stuff, anything. The internet is where I hide. Where I pretend that I’m not dying inside and just wishing things were different.
I used to read an HIE blog about a little girl named Sophie; she ended up completely neurotypical, even though she started with a similar diagnosis as Noah did. That’ll be us, I used to say. I found it when Noah was maybe 6 weeks old. Even though we had just had the most dramatic and traumatizing 10 days of our lives, there was hope. Noah didn’t die like he was supposed to, so maybe he’ll be just fine.
A few weeks later I found another blog about a boy named Mikail; he had suffered a stroke in utero. His parents live in the same town as me, he’s about 6 months older than Noah. He was discharged from Glenrose at around 12 months (or maybe 18, can’t quite remember). That’ll be us, I used to say. We’ll prove the doctors wrong. One time the blog mentioned that “if they sit unassisted by the time they are 2, they will walk as adults”. That’s our goal, I said. We have plenty of time.
Then as the months went by, that hope dwindled. When, at 4 months, Noah still couldn’t hold his head up, it was ok, a few of his baby friends from his birth club couldn’t either. He’ll just be a little slow, is all. It’s not too late yet.
His baby friends started crawling, sitting unassisted, doing their baby thing. Noah laid there. When we went to the Okanagan last summer when Noah was 6 months old, we had a baby meetup with the Okanagan chapter of his birth club. He was the only one who couldn’t sit on the couch, and he kept making the other babies fall over. While the other little ones could sit up and play on the floor, Noah had to stay in my lap.
A few more months, and lots of milestones from his baby friends. They were now “furniture surfing”, standing up leaning against things, some even walking. There were some first words. Noah still laid there.
Summer pictures of babies on beaches, swinging in swings.
October came. Cute pictures of his baby friends sitting in fields, next to pumpkins, in leaves, in their Halloween costumes. I had to prop Noah against the window in an elaborate “staging” area with pillows and blankets galore and leaves strewn about, just to get a few “fall” pictures, and someone made a comment about how it looked like he was on a bed. How I wished that he could sit in a pile of leaves independently like his baby friends.
Then, their first birthdays. A lot of them did cake smash pictures, as you do for first birthdays. Just a baby in their diaper, smashing and eating cake. I tried my best to give Noah a “cake smash” too. I “smashed” his cake for him with his hands, tried to get him to open them to feel the squish. I put cake on his face, pretending that he had put it there. Let him taste it. At his birthday party, his friends played on the floor while he sat on a lap. They played with the toys he can’t play with, sharing with each other and doing their baby thing. I was happy to be sharing his day with his and our friends, but I was sad because he couldn’t play with his friends like he should have been able to.
Then we moved to Edmonton at the end of December through end of February, to do this stupid therapy that didn’t even do anything for him. How bitter am I at that, feeling like we’ve thrown thousands of dollars and two months of our lives down the drain, just to have the teeny little chance at having a normal child. How cruel is it that there are all these people selling you these procedures and equipment, telling you that they will help, but not giving any guarantees and yet happily pocketing your money? Parents of disabled children, WE are the ultimate money-making scheme. We who would sell our souls and work our fingers to the very bone, just to have a healthy child. This man made himself out to be a fellow special needs parent, “you can’t trust the ones that say they have a cure“, “they will always try to sell you something“, he said. Well who knew that he himself was one of those people, out to make a buck off of other people’s pain. Apparently only 1 person had never seen an improvement with the therapy in his 16 years of doing it; was Noah #2? I realize now that we were played, hard. There is no follow-up process, so how would he know if there was anyone else like us, like that other person? I am angry at myself for believing him, believing that he had the answers because he had been there before with his own son.
It’s the same feeling that I get whenever I think about the entire month of December 2010, in general. I trusted people. I trusted the doctors to do what was right, to make the right decisions, to deliver my perfectly healthy baby into the world. What do I know, I’m just a first time mom. They are the professionals. I should have pulled the goddamn Cervadil out myself, but I didn’t even know that I could disagree with doctors, didn’t know that I could do something like that without their permission. My mother taught me to respect my elders, respect authority figures. I didn’t know that I could express dissent. Tell them that the contractions were too hard, too fast, not “mild” as my chart says. Bull-effing-shit they were mild. 30-45 seconds long and 45-60 seconds apart right off the bat is NOT mild.
The most tragic part of it all is that I didn’t learn or realize the “coulda-shoulda-woulda” until much, much later. I was told to come in to be induced (didn’t know what kind of drug was going to be used), told to lay down on the table, the doctor came by with a couple of nurses, told me to raise my legs, he inserted the Cervadil, the nurse attached me to the monitor, they left me alone. No mention of anything in regards to risk or things to look out for, besides on the form that they sent me home with, which just listed them as, “Call L&D if….”. Maybe that was my fault. I should have asked questions. Maybe between contractions I should have Googled what Cervadil even was.
Perhaps I should have just gotten Gravol instead of Morphine/Gravol. I didn’t ask if that was an option. Maybe part of the problem was that I had had that only about an hour and a half before I started pushing, even though it felt like it was completely out of my system at that point. Maybe that was part of why Noah was unresponsive, because I had let them insert a narcotic into my system, when for months I had told myself that I was only going to get the laughing gas.
I hate thinking about that horrible, wonderful day. Even though it was terrifying, there was joy – our little boy was born! And hope. Babies spend time in the NICU all the time. He’ll be fine, home for Christmas.
But I digress.
It’s so difficult, reading and seeing these babies that I love like my own, all turning into little people, actual children rather than babies, while Noah is stuck as a pseudo-newborn. The emotions are so conflicting. I am happy, I am sad, I am disappointed, I am frustrated, I am just overall pissed off that this has happened. I spend every day wishing and hoping that this has all been a dream.
I dream of a neurotypical Noah, and when I wake up it’s like someone punched me in the gut so hard that I can’t breathe. It hurts so much seeing all of these babies doing their regular baby thing and seeing Noah getting further and further behind. We have literally been working for the last YEAR to get Noah to say something beyond “ahhh” or “gooo”, etc, and it’s still not happening; some of his baby friends are onto “Mommy” and “Daddy” and stringing sentences together, and he still isn’t doing “babababababa” or “mama” or any of it.
I teared up in Superstore the other day, there was a baby a bit younger than Noah sitting in the cart and she was “yelling” and her mother was trying to shush her and was looking embarrassed. I teared up because I wish that I could worry about things like that, normal-mom things. We wear Noah because we have to, we don’t have a choice. I would love to be able to go to the store with nothing but my wallet, some Graduates, and the baby. Instead I can’t even carry him without a carrier because he doesn’t wrap his legs like regular babies do, doesn’t grab or hold on. Yesterday I grabbed some lunch at the grocery store, just grabbing one thing, and it was ridiculous. Noah was sliding off of me, I was pressing him against my waist because he slid down so far, and I was seriously just power-walking as fast as I could across the store before I accidentally dropped him.
I cry at pretty much everything to do with babies or toddlers nowadays, diaper commercials, any Johnson+Johnson commercial, etc. The other day I was cleaning the pantry and I dropped some Cheerios on the floor. I wonder if this is how a mother of a toddler feels, I thought to myself as I was picking them up. I chuckled at my own joke, but then it just made me want to curl up into a ball. A toddler. Noah’s supposed to be “toddling” by now. I can’t wrap my mind around that all, trying to imagine him walking is far beyond my frame of reference.
I went for a waxing appointment at a casual acquaintance’s house the other day. “You could have brought your son, I have lots of toys“. Ha. I smiled but inside it felt like yet another punch in the gut. Oh, how nice it must be to be able to just put your kid on the floor and have them play. In my mind, I played out how that would have to go if I brought Noah and I just chuckled bitterly. She doesn’t know about Noah’s issues, and I didn’t have the energy to tell her.
Perhaps that’s a sign of growth, that I’m not word-vomiting Noah’s story to everyone I meet. Or maybe it’s just another sign of how much I’ve changed over the past year or so. I have become so terrible at real life conversations that I retreat behind my computer, because it feels like the only people I have to talk to are my online friends. My real life best friend dumped me months ago, I rarely see my babyless friends (as in, it’s been months), and I’m terrible with keeping with with my babyfied friends (some of them have been months as well). It’s easier to catch up online because I don’t have to go through all of the planning and trouble that it takes to get Noah anywhere. My house doesn’t have to be clean, I don’t even have to put on my contacts or get in my car. I don’t have to put on the fake smile, try to be cheerful, socialize. That’s the funny part, I used to love to socialize. Go out with friends, do whatever. Now everything with Noah makes me feel so isolated, even at his Early Intervention playgroup. Most, if not all, of the other babies/kids are at least crawling but usually walking, they are loud; Noah doesn’t deal with noise well, so more often than not we end up sitting in the corner, as far away as possible so that he doesn’t get too overwhelmed and start crying. As far as I know, we are alone in that Noah has a mental and physical disability, the other kids are just physically or mentally disabled, or if they have both one of them affects them only mildly. Meaning that they still interact and act like babies/kids, but with something slowing them down [I’m not trying to diminish any other child’s issues, but it just seems different to me, like we are fighting a war on two fronts while everyone else just has one].
The older he gets, the harder it is to remain positive about anything. It makes me resent him, wanting him to just hurry up and grow up already. I hate the feeling of being STUCK and not having any way out of it. And then I feel guilty feeling those things.
I wish that there was a manual for this sort of thing, like “How To Not Lose Your Mind: Your Guide To Having A Special Needs Child”. Sigh.
I think I may have ran out of things to say, so I’ll end it here. Kudos to anyone still reading, you just read 2300 words’ worth of frustration.