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.

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5 thoughts on “This post doesn’t have a title.

  1. Sorry you feel trapped. hope you find a way to be have a happy joyful life… Circumstances are only one part of the equation… Happiness can be found, peace can be found… Maybe you are looking in the wrong place… A career wont love you back, neither will money, or status… Noah does… Do your “friends” have that? You wanted a career, well you have one, You are a mother, treat that like your career, love the fun parts, work hard to get through the tough stuff, work on the things you can change, and accept the things you cant. Allow yourself to be proud of the job you do… NO ONE else can do it the way you can! Thats something to be proud of.

  2. You are in an overwhelming situation, you deserve to have a life as much as Caleb. You deserve friends. You deserve interests and activities. You deserve more than parenthood alone. Right now this is your life – and it is more than full time, but ask if it really needs to be all on you, all the time. If it doesn’t really need to be all on you, all the time – then what can you do to make some space for yourself so that being a mother and the situation does not suffocate you?

    Do what you need to do to get some respite….

  3. Hi Olivia, I have started following your blog, as Noah seems to be similar in a lot of ways to my daughter. I am so sorry you are going through this rough time. It sure is a heck of a roller coaster. I am sure you get advice all over the place for things to try with Noah, like I have for Emily. But I wanted to share the thing that has worked best for us. It is a Dynamic Movement Orthosis. Radically increased her trunk tone. They have a great youtube video on their site. Anyway, just wanted to say hi since we are following you now! Thinking of you as you go through this hard time.

    Sarah

  4. Hello Olivia,

    I accidentally came across your blog, and after reading this post, I’m not so sure it was such an accident.

    I’m not going to say that I know what you are going through. I was 23 when I had my first of 4 children. None of them a a severe physical handicap, though 3 do have at least some form of a learning disability. If I sat here trying to compare my life to yours, it wouldn’t be fair because it would be like trying to explain the difference between lukewarm bath water and a pot of simmering water – without knowing what a bath, pot, water or temperature is…

    Let’s just say that I can hear you loud and clear. It’s NOT fair. It’s not what you wanted for your life. You didn’t ask to have to take care for someone 24/7 for the rest of your life. You wanted to be able to have fun. Go out with friends without talking about all of this medical care that Noah needs or will need. Find out more about life, and the world, get a job/career that you love passionately… Have all kinds of success in life. When you were 15, the world was just starting to open its doors to all of the possibilities of life, and it was going to be a great big, wonderful and wonder filled life. You never thought that it could all change in a heartbeat.

    Ten years ago, you didn’t imagine that this would be your daily life. That you would be a wife and mother, maybe, but to a child with special needs – scratch that, extraordinary needs? Not even on the radar! When Noah survived the traumatic experiences that the doctors were sure would have killed him, not only did the healthy baby boy die, and Noah was born (as you said somewhere along the way, I’m not reading your posts in order…), but so did your life.

    I worked in a University office where I saw my boss’ CV. She had travelled the world! Lead symposiums! Written books! She had talked with great minds and helped shape the how we see the world. I was in awe of everything she had done, especially when I compared myself to her. I was a secretary that could barely hold on to temp jobs. I had changed careers 3 times by the time I was 40 (not counting the 12 years I took to be a SAHM). I had always dreamed of being a writer, I can barely keep a blog going. I had always dreamed that I would see the world, especially Europe, I haven’t left the Maritimes (except for a short stint in GTO when my ex had a job there for 2 years…). I had always thought that, no matter what I did, that I would be recognized as someone of authority and knowledge in that field… My actual life isn’t so amazing.

    Then I had to look at what I had accomplished with my life. While my boss was at university getting her Ph.D., I had already started my family. While she was traveling the world, I was having more babies (I never planned to have four babies, I just planned to have a complete family… We took them one at a time. When baby #4 came along before I was 30, I knew our family was complete.). When she wrote books about the role of women in society, I was reading stories to 4 girls under 7, nursing concussions, and watching in amazement as each girl discovered the new and wondrous things in the world. She was studying about it, I was living it. She taught her students what she learned, I taught my daughters what I experienced.

    I know it’s hard to see what all of this struggle means, how it could ever be a good thing – can CP ever really be a good thing? I think that it can be a beautiful thing, once you know where to find the beauty of it. I haven’t “been there and done that” with CP, so I could never even suppose to tell you what it will be like, but I have “been there and done that” when my own personal dreams about life came crashing around my ears. It is devastating and demoralizing, especially when we see others doing what we onced dreamed of for ourselves. Is it fair? Absolutely not. Is it fun? Nah-huh. Right now, you are in the absolute thick of it. It’s tough, and you’ve got a ways to go before it gets much easier. I could offer a lot of platitudes (“It’ll get better.” “It’ll get easier.” “It’ll be the hardest, but most satisfying…” …), but even though they are all truthful in the long run, it isn’t the reality that you are seeing in your day-to-day, right now.

    What I can say is this: I hear you. It is hard. It isn’t fair. It will be long. It is scary. It is overwhelming. It is intimidating. You are right on all of these counts. It is your reality right now (well, at least a few months ago…). The tunnel is long and dark, but I promise you, there is a light there for you. The waves are carrying you under, but I promise you, there is a lifeboat out there for you. The one and only thing you need to know isn’t what today, next week, or next year is going to bring. It isn’t what the doctors and therapists and, one day, teachers have to say (although it is helpful to a certain extent). It isn’t even what you think you should be doing as a parent and mother. The one thing you need to know is that YOU are the Noah expert. No one else will be able to “read” him as easily, no one else will be able to fight for him as tenaciously, no one else will be able learn as much from your little boy as you will (with the possible exception of his dad…).

    You already know what makes him laugh. You already know when he’s hurt. You already know when he sees something that amazes him and he is in awe, and let me tell you, he is in awe of you. It may not be what you wanted. It might be exhaustingly hard. But in this little boy’s eyes, you are already more than you could ever had possibly dreamed to be. Don’t be too hard on yourself. As odd as it may seem, I can guarantee you that you are still on the learning curve… I know, my oldest is 18, and I’m still on it. Don’t sweat the small stuff (and missing an appointment because you forgot about it in the 3 million and 14 things you have to remember in any given day IS small stuff…), at least you didn’t throw your baby out of bed! (It WAS an accident, I had fallen asleep with her in our bed, holding her in my arms, I turned over – the wrong way – and promptly dropped her sleeping dead weight to the ground! 17 years later and I still feel guilty… :/ )

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