My Daily Life…and Random Musings


The day-to-day happenings of my daily schedule may change slightly but for the most part, they are consistent. I am in a constant state of stagnant. That’s possibly the hardest part for me…..the flat, tedious horizon that is possibly my biggest source of pure emotional weariness. For how can I be encouraged to expand in my mothering skills, in my daily quest for why I am even here….if nothing ever changes.

The mother of a neurotypical child constantly has to adapt as that child grows older and more independent. She learns how he plays, how he prefers to eat, how his daily activities influence the eb and flow of the household. When for one minute her child was completely stationary, a “houseplant baby”, if you will, the next minute he is crawling across the room, and in the next he is running around the corner and getting into that pile of papers she neglected to put away.

For me, I have no motivation for anything. I don’t get that instant reward of a delighted child, a beautiful baby laugh, the incessant grabbing of curious hands, and later the climbing and exploring of a toddler. Smiles, although still present and willingly given, seem to be rarer, now. I can’t get that smile out of him for simple words or funny faces anymore. But it’s endlessly frustrating because I do not know what he wants. He cannot communicate with me the way a 19 month old should be able to.

When he cries, I do not understand why. Most of the time it seems like he is tired of me. I am boring. I don’t know what to do with him, because he doesn’t challenge me. Maybe that’s a heavy burden to put on any child. Probably. I don’t know if he is bored, hot, tired, or just doesn’t want to be near me. Most of the time the crying stops as soon as I prop him on the couch away from me, so I assume that it is usually the latter. It’s hard for me to understand. I have yet to hear the words “mama” or any variation thereof from him. Maybe it is cruel for me to expect that as a form of reward for me. I most likely haven’t deserved it. I get no feedback besides blank stares, crying, and the odd shy smile anyway. I have yet to hear a true laugh from him as well. Sometimes by exhausting myself by throwing him in the air (which I’m sure his PT would not approve of), I can get a “Heh….heh” from him, a sort of chuckle. Occasionally something close to a high pitched giggle. Perhaps I am trying to validate my mothering skills through my child’s reactions to me.

But I do know that it hurts me to see the way he reacts to his father, when it shouldn’t. There are always more smiles, more almost-laughs, more happiness. My theory is that it is because Caleb doesn’t see him as much as I do, but maybe Noah just sees something better in him than he sees in me.

My housekeeping skills are null. I can admit that. This house overwhelms me. We have such a tiny space and so many things to fill it. I feel claustrophobic, the weight of keeping a clean house seemingly squarely on my shoulders. At this point I feel like it is just dragging me down even lower. I am embarrassed and ashamed but yet I can’t just *snap* out of it and suddenly clean everything like I used to be able to. It’s bad. I need help but I have no idea where to get it from. It’s like I need a week and a team of people to help me organize everything. I constantly lose things because I put them in a pile of papers for safe keeping and then forget which pile they are in.

—-

I started this post with the intention of outlining an actual daily schedule….apparently I had more on my mind than I thought.

Bringing it back a little. My daily life truly is a struggle. A treadmill. Someone fighting to stay afloat, struggling to breathe. Whatever your analogy of choice happens to be. I recently found a graphic outlining the 7 stages of grief. I move between the first 6 stages, depending on the day, but I have yet to reach acceptance, the final stage. Today was a “depression” day. We live in a condo, and in our complex there are 3 other children around Noah’s age within the same stretch of lawn. Today the other children were playing on my neighbor’s play structure (slides and the structure itself). The other neighbor made a comment to Noah, to the effect of “would you like to run around and play?”. The way she phrased it made me think that she thought he was sitting in my lap because I refused to let him play. All I did was half smile and not say anything. I was wearing sunglasses so I don’t think anyone noticed the tears in my eyes.

It breaks my heart every single day that Noah can’t play on that structure too. It’s amazing to me, watching the children climb up and down and slide, their gross motor skills far, far exceeding Noah’s highest potential. I don’t see it often, so it’s enthralling for me to see the way their bodies move, all of the teeny little things that happen with their muscles, all things that most people don’t notice and take for granted…..all equaling the simplest motions that a human can do. Stepping, climbing, reaching, turning their bodies, and reacting to stimuli. It’s almost funny, only because if Noah was NT….it would just be children playing on a play structure. It would be like breathing or blinking, nothing to get excited about. But imagining Noah doing the same things as those children is so far beyond my frame of reference, now. It’s something that I literally dream about, something that I obsess about, something that I’m coming closer to accepting the fact that will never happen for us. I can hope, wish, cry, all I want. The fact is that the likelihood of Noah ever taking a step on his own is very, very slim. Sure, you hear stories of children who learn to walk at 5…..but they are very few and far between.

That’s very difficult to come to terms with….but I’m working on it.

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4 thoughts on “My Daily Life…and Random Musings

  1. Your feelings are allowed – what you do with them can make you or break you – If someone doesn’t want to be in your life anymore “keep the good memories of that person that meant so much to you” and then go forward – this is not easy when you feel your future is uncertain or isn’t what you want.
    Noah lived – I would like him to run, jump laugh and play – babies all babies that we as moms are entrusted with are not there for what they can give us – we are the nurturers not this little life – that needs us 24/7 – Children that can do all the things that Noah cannot, if you left them outside and shut the door they would not thrive and jive any better than Noah.
    It is tough and we all have plans, wishes, dreams and they do not come to fruition just because we wish, dream and plan.
    When you were told at the Stollery Noah would not live the sadness grab your heart- and if he did it would be like this, this, and this (not to elaborate all that the Dr. perceive Noah’s future would be) He LIVED and he is lots of work – look at how fantastic you have been with him, he is beautiful – his skin, his alertness, he cries but I have heard some CP children scream constantly. Love (and I know you do) all that Noah is now – not what you wish him to be. I am not certain but children can sense if a parent thinks of them of something that did not measure up. What happened to Noah and the outcome he was given was no one’s fault and it certainly wasn’t his fault.
    I know you live a day- day after day that is not to your liking – comparing it to others that have better circumstances or worse circumstances doesn’t wash – cause you feel what you feel – Picture Noah in an institution with a nurse or several nurses that just puts him through all the rigors of routine – no “I love you son” “How’s my little man?” “Look what mommie made just for you” – you hold him and hug him- he is nice and clean one would think you polished him with a buffer – all this only you Olivia can do. Look in the mirror and say “you is kind, you is smart, you is important” – not just because of that movie – but it is true, you have to think enough of yourself to keep going. Forward steps do not have to be leaps and bounds. Little steps have huge results, too.
    I read in a self-help book years ago – The rewards of raising children – do not manifest themselves until 20 years down the road. We live right now – cherish each moment –
    It is wonderful that you can express yourself so well – It should be printed out and put in a binder.
    How you feel today and recorded – most likely will not be how you feel later on.
    Now how do I send this

  2. Another honest post.

    Mom’s never get all the rewarding smiles, and giggles that Dad’s get…(or whoever is doing the fulltime role). I think looking into monthly respite care would be a good idea. Mom’s need a break too – even more so in your shoes.

    Finding new friends is important too, easy comfortable friends that can walk into your life an accept you and Noah with no complications. Friendships change when we settle down with a partner, and have kid’s. In childhood we are encountering the same “firsts” the same worries and joys at the same time. Once you leave that arena we are so very different and some people are just not good friends during life’s changes.

    I know you are involved with many online groups, have you met other Mom’s in similar situations. Seeing the joy of a CP child, adult is truly amazing. Maybe, start teaching or talking to Noah about what you know. Talk to him like a little adult, find interests together…read about something you enjoy to him. I understand him wanting to sit on the couch by himself at the end. That is exactly where my boy would be….he is showing you how he is growing and independent in his own way. Do not think of him as a baby but a child.

    I have full respect for you, and cannot appreciate at all the struggle you have daily. I offer advice and ideas, but really I have nothing but support for you.

    You love Noah. Noah loves you, with that you will get through. Somedays, maybe it just has to be as simple as that.

  3. When I was your age, I was newly married, and had a healthy nt baby. I was overwhelmed, suffering from depression, and enxiety, and I was just plain scared of how I was gonna handle all the responsibility. You have way more to handle, to carry, and you don’t have the support system that I did. (Back then I had a mum and a mother-in-law who could help, babysit, ect). Noah is a whole full time job, career path, baby, and lifelong responsibility, I get why you are overwhelmed. Even the bestest middle aged “super mom” with years of mommy experience would be fighting to keep her head above water.
    It sucks when friendships don’t last, but I will tell you this, and I am sure most people would. You have only a few friends that stay in your life for the long run. By a few I mean 1 or 2. You won’t see them everyday, in fact the older you get the less often you will see them. But when you do, you will pick up right where you left off, and things will always be that way. The thing is with friends, sometimes the best ones are the ones you don’t think are your “besties.” Here’s why, your real friends, will tell you when you are being an a$$. Your real friends will help you out, go out of their way to do it, and will expect nothing in return. Can you think of anyone in you life like that? If you have just one person in your life like that, than I would say, you are average, and I think most people would agree.
    This is what I want to do. Let’s try this out, and see if it helps. I can’t be in GP which sucks, or I would be there for you alot more. But this is what I can do: For 3-5 days a month, Monday – Friday I want Noah. Eventually I will get the gear he needs here, playpen, high chair, bottles, formula, diapers ect. I will meet you in Dawson to make the swap (it’s about 1.5 hrs drive for you). This way you will have some time where mr noah is not there, you can clean house, you can get groceries, you can make some frozen casseroles, you can go get your hair done, whatever, but use the time to fill up your cup. (I would suggest make a list of little rewards for yourself: have coffee at starbucks with your sister, or go for a walk in the park, check out the mall ect., and a list of things you want to accomplish: pay the bills, or do the dishes, or vaccuum, or go through noah’s too small clothes, and box up. Accomplish something and reward yourself for it) You will know he is safe, and loved, and taken care of, and you can spend some time in the outside world, without having to pre calculate all of noah’s necessities, before you make a move. We can try out just a few days to being with, and see how it works for everyone. With FB and Smartphone, I can send you more pics, and vids than you can shake a stick at.
    The bonus for me, I get to spend time with my favorite nephew. Noah will get to know his cousins better, and his cousins will learn some important life lessons, about being compassionate, and empathetic, and thankfull for having arms and legs that work.
    Think about it. I hope you guys take me up on the offer.

  4. No great words…just ((hugs))

    My kids are NT so I can’t speak from the place you are. But I have dear friends with children that are at different stages of devolpment in relation to an HIE, micro preemie & autism.
    I’ve also had a best friend “dump” me. Just sucks.

    I hope the days bring you more joy. hang in there mama. Feel free to fb me

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