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….