Putting 'Pardon?' to bed

After eight months of telling everyone with a medical degree (or medical training, or people who might know people who have medical training) that Jamie can't hear again we were finally vindicated a couple of weeks ago when Jamie bombed his hearing tests. We're talking not even in mild hearing loss levels, but moderate. I told you so, doctors; there are many things I am a fantasist about but not glaringly obvious medical problems. Due to the amount of time we've been chasing this, the support of his teacher in agreeing it is a major problem, the fact that he had this operation before, and the poor hearing test we were fast-tracked straight onto the waiting list for an operation*. It was supposed to happen by the end of May, but a call came today that there was a cancellation and he's having it on Monday! At the very least it's a double-grommet insertion but it could quite possibly be another adenoidectomy as they suspect his have grown back out of spite.

The last time Jamie had this operation (please click through if you haven't read it because the immediate difference for him was so poignant and profound) almost exactly two years ago he was only four. But it turns out he remembers it vividly and he's pretty scared about the general anaesthetic. It's heart-aching to hear him describe the smell and the taste of the gas and how he woke up without me there (he was sobbing and clinging like a limpet to a random nurse when I was brought through), but this is going to make his life so much better. And ours too. Wish him strength and bravery.

*When I say fast-tracked, I mean that he didn't have to jump through additional hoops pre-op. Normally you need three failed tests in a row before they operate, which is what happened to us last time.

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If this was my journal I would use it to chart the incidence of the word 'Pardon'

Despite the fact that being in the company of my children for prolonged periods of time is a gift in-and-of-itself, I also made a couple of small gifts for their various caregivers. For Jamie's teacher I made this fabric covered notebook in Alexander Henry's pretty tulip print. I didn't make a gift for his teacher last year, but I've had quite a bit of contact with his teacher this year due to the re-emergence of his hearing problem. I don't think I've mentioned it on the blog, but he's struggling to hear well again and we are back in the system to get it sorted. By 'get it sorted' I mean wait two months, find out the referral was never actioned, wait another two months, have an appointment that deems his hearing acceptable, and then get discharged.

Pictured: a gift for Maia's childminder. Not pictured: segues between topics

Armed with a letter from said teacher confirming that there is definitely a problem (thereby making me appear at least 65% less neurotic / fantasist / Munchausen's by proxy), and a very painful yet comical discussion with the GP where Jamie said 'Pardon?' sixteen times in a row, we're back in the system for a second time this year. I absolutely don't know what to do if they say his hearing is fine again.

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Ensembles and Explanations

Hello Kitty patch

Thank you for all of your comments about Maia's patch and your thoughtful advice, it's day five now and she's blown my socks off with how stoic she can be. We've had a play-date with friends be-patched, and today we ventured into town for a movie, lunch and a spot of shopping and she's not put up a fuss at all. She has even answered questions from other kids today about why she was wearing it: 'It's for my eye to get stronger'. Subject closed and everyone moved on. She's a star.

Coordinates Hello Kitty from head to toe- seriously!

I probably should have said the other day that deciding to make her cloth eye patches over using the adhesive ones wasn't a whim on my part; I think some people were worried that making her patches was tantamount to refusing a cast for a broken leg and crafting a Popsicle stick splint instead. When we were at the optometrist, all of the options for patching were discussed and we were given a cloth patch to try on in the office (which I of course studied and then researched later), but the NHS doesn't give those out for free. I told the doctor that I'm a seamstress and we discussed what the requisite properties of an eye patch were: in short, to block the good eye from seeing at all. One of the advantages of a cloth patch over an adhesive patch (other than the irritation of an adhesive), is that a cloth patch allows the eye to be open where the adhesive ones tape the lid shut. If you can see from the closer-up pictures, the patch is darted at top and bottom so it forms a dome around the eye socket. This allows the eye to be open and blinking along with the other other eye, but unable to see anything at all due to the wrap-around onto the leg of the glasses and the coverage up onto the forehead and down to the cheek.

Red and pink hearts for red and pink ensemble

The greatest treat for Maia (beyond the comfort), is that every night she has picked a new fabric from my stash for another patch to match the next day's outfit. Perhaps not viable in the long term, but a small inconvenience for me to reward her for her bravery. I couldn't be more proud of her.

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Going through a Painful Patch

Sometimes we say, 'Oh, that was painful to make' because the fabric was evil, the machine misbehaving, or the pattern was tricky. But sometimes we make things that are just painful: things we didn't want to have to make, things that invite others to notice you're different.


At the optometrist yesterday for the first post-glasses check-up, her bad eye flunked. The glasses have corrected her vision in her good eye to passable but the disparity between her eyes means that information picked up by the lazy one is being disregarded by her brain and therefore her eye isn't getting stronger.


So now we need to patch six hours a day to force the bad eye to improve. The end result will hopefully be a success, but at the moment she's struggling to see at all. And asking valid (yet plaintive and heartbreaking) questions about why we're making it so that she can't see anything, and why everyone else doesn't have to wear one. Today she said she didn't want to go anywhere because she didn't want people to see her patch. For a very sensitive and easily embarrassed child, this is going to be a hard time for her. Without a doubt it's less hard for me, but I feel so sad for her and at a loss as to how to help.


The adhesive patch she wore yesterday removed skin and eyebrow hair when it was taken off so after a couple of hours of research last night I rustled up this prototype for a cloth patch. There's a couple of changes I want to make now she's had it on all day but it must be more comfortable than the adhesive one. And obviously-- pink. Parents of patchers/ those patched as a child / creative types / psychoanalysts... any advice on how I can help her?

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Absenteeism

When there are big things happening and worries on my mind, I find it hard to blog. As happened when I realised Maia had a lazy eye, the act of Not Acknowledging takes on a life of its own and robs me of my voice. For the last two weeks, I haven't known what to say. Sure, I could've posted pictures of the heaps o' projects I've completed in the last two weeks, or a photoshopped glory of Kate in a tiger suit with an angry Alexander Skarsgard (actually I can't do that because she very unreasonably will not let me see a picture of her head) but I've been paralyzed by the worry that by painting a picture of 'normal blog service' I am being inaccurate. Admittedly, that's harsh- when I read other blogs I don't expect full disclosure of everything that is angst-ing the writer; neither do I feel betrayed if people only choose to share the beautiful and the happy. But for me, I struggle.

In a week that included an emergency extraction and dental abscess for Steven and the sad passing of his Nana, my mother-in-law was seriously injured in an accident in Spain when a steel sliding door at their holiday home came out of its tracks and crushed her. A broken shoulder and pelvis may not sound lucky, but it was very close to being even worse. The road to recovery will be long and hard, and unfortunately a large part of it will be in Spain. As a daughter in law and a friend, I feel tremendously guilty that I can't support my mother- and father-in-law in a tangible way. I feel guilty that life with our small family goes on, while our larger family's is on hold. I feel guilty that documenting our lives going on as normal is an affront to the people whose realities have changed.

So, a caveat lector on all posts from here on in: Normalcy by the author is greatly overstated. Behind the scenes, we're anxious and we miss them.

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On Beauty, on Truth. And my own shallowness.

When you post pictures of yourself you can pick and choose what to share. You filter out ones where you don't look good, you crop out bits that unflatter, you adjust the brightness / contrast to restore yourself to humanity, you make glib comments about your appearance to preempt anyone actually thinking those things for themselves, and to give people permission to laugh about you because, hey- you're doing it yourself!


Does that change when you're posting pictures of other people? My treatment of posting pictures of the kids over the last couple of years has been much the same: filter out the ones that don't flatter them, adjust brightness / contrast, crop out some debris I didn't want shown. Not to hide anything, but to show the pictures and the kids (and myself by extension) in their best light. I didn't feel guilty. It's what we all do.


And then something changed. When I first noticed Maia's eye turning in, I thought it was an aberration and the pictures that highlighted it were filtered out as 'not-flattering'. I used pictures where she was looking down, or away from the camera. But as the months have passed, it's become clear that she has a lazy eye and it's obvious in more and more pictures. And still: I use pictures where she is looking down, or away from the camera.


I've been struggling with feelings of shame each time I post pictures of her because it's come to the point that rather than just enhancing my pictures, I've been hiding something. I've lost my integrity.


She is the same beautiful girl, she has nothing to be ashamed of. But how can she know that if (even unconsciously) I've been denying this is part of who she is right now? I know I have a lot of thinking to do about this and hopefully treatment will be a success, but it's going to be a long road and I need to do better.

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Showing your emotions as a parent: The good, the bad and the ugly?

We interrupt this blog to talk about serious stuff...

Yesterday was not a Good Day. In truth, I haven't had a Good Day in a long time but yesterday was particularly bad: I cried in front of the kids. I have very complicated feelings about this. I do feel that it's important to show them that it's okay to feel sad or angry just as much as it is to feel happy. I know through my own experiences with depression that internalising negative emotions is toxic. But yesterday was more complicated than 'I bashed my toe and it's sore', or 'I'm sad we're leaving Grandma and Grandpa' or 'I'm angry that our oven just broke and I'm not sure how I can make dinner now'. Those are things that easier to explain, fall within the realm of things that are 'rational' to cry about, but most importantly have nothing to do with the kids.

But what do you say when you are crying because of the relentlessness of being a parent? That Jamie's constant begging for food every minute of the day makes you despair? Or that the fact that 98% of everything that Maia says is a whine makes you see red? That they never listen? Or they never stop fighting? Because I also know that giving children a sense of responsibility for their parents' emotional well-being is very toxic. What a burden to bear on tiny shoulders that what they do or don't do can make me cry.

So what do you think about children seeing their parents cry (both as a child yourself or now as a parent)? Is it healthy or does it just create panic? I'd love to hear your thoughts, unless of course your thoughts are that I'm a bad mother. I'm just not up to hearing that right now.

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The backstory

Firstly, I want to give a massive thank you to everybody who commented on my last post and sent messages and emails of support. I've been overwhelmed by your kindness and it's helped me more than you know. Although I'm embarrassed to show myself so raw and I'm conscious that this is partially a business blog *waves at customers who just want to see some fecking clothes* I'll give a little bit of a backstory about how we've gotten here.

I started going for therapy for PND a couple of months after Jamie was born. I didn't know this at the time (I found out recently when I was wrapping up my therapy) that the phrase 'failure to bond' was scattered across my file. Maybe it's true or maybe it was perceived because obviously when I was there it wasn't to discuss the joys of motherhood, I don't really know. I do know that if I did have a hard time bonding with him it's not anything I had control over, no one has ever wanted to bond with him more than me. You're right, I've never harmed him, he has always been cared for, I've never locked him in the the cupboard under the stairs because we don't have any stairs in our flat I wouldn't do that.

Just after he turned one he started the crazy behaviour. I was due to go back to work so he was put into a lovely nursery in the mornings and he was the picture of sweetness and light while there. The staff loved him, he was cheerful and engaging and delightful. But from the second we got home to the second Steven came home from work, he was an animal. He screamed and slithered around the floor for hours in a rage and nothing I could do would make him stop. He didn't want me to touch him, he didn't want me not to touch him, and he couldn't be distracted from it. Nothing would make him stop. No one else would ever see him this way. He never did it a nursery, he never did it in front of Steven (at least not until later), never did it in front of other family members or friends. Through the PND centre we managed to get referred to the play therapist but he never did it there so she could only take my word of how bad it was. It was truly our Dirty Secret, it was our time together that was tortured and fraught. For years. The most random things would set off hours and hours of screaming and writhing on the floor; I took Maia's jacket off before his, he wanted me to walk back to the childminder's so he could say goodbye one more time. It was really, really hard for me to empathise with psychosis brought on by not having any apples.

We went to the play therapist together on and off for two years, firstly for the hysteria and then later for the obsessive behaviour, the inability to cope with change or disappointment, the food issues, the sleep issues, the constant running commentary of everything he's doing, the incessant questions. All of these behaviours are born of anxiety. And that anxiety is born of separation / bonding issues. And that's why I feel responsible. It's a lot better now, his episodes are now only once or twice a month and can often be reduced in length merely by me saying, 'I know how disappointed / angry / sad you are about fill in the blank with something nonsensical and that's okay'. But I worry about the fact he spent a considerable part of his first three years consumed with anxiety and how it has affected him.

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This aching... part two

Just look at their expressions. I think this is one of my favourite pictures because this is how I want it to be: he so fierce and protective, she so proud and secure to be in her brother's embrace.

I worry about him constantly. I listen to how well his peers communicate, how children even younger than him hold conversations that make sense. I read about mums who are talking about the big issues with their four year olds, and compare it to the remedial conversations we have. His talking has come on so much in the last year, but so much that he says just doesn't make any sense. Heading down to the soft play centre yesterday, he kept asking what colour it is. I said that I guess it is yellow, because it has a yellow sign and the mats are yellow. But still he asks, he asks a dozen times until I'm not sure I've gotten the answer right, that I didn't understand what he wanted to know. And then, 'Is it going to get bigger?' I told him I don't understand his question, that it won't get bigger, it is what it is. But still he asks, a dozen times, and I worry.

Once at the soft play, there were two little girls (also four) playing together in the ball pit. Jamie is automatically familiar with people and joined in the game they were playing, which was fine for a time until they decided they didn't want to play with him. 'Let's get away from this boy,' one said. 'Yes, we don't want to play with him'. They scuttled off with Jamie in pursuit. 'Come on, Maia, the girls are going this way!' But Maia knows when people are being mean, and she sat and pouted in a defiant way. He continued pursuing them, trying to engage with them. I got him to come out and take a drink and the girls came out too to complain to their carer that he wouldn't leave them alone, that he pushed in front of them, that they didn't want to play with him. All four went back in, the girls openly mean, Jamie oblivious, Maia mostly impervious. Coming down the slide, one of the girls pinched Maia's back and at the bottom she stood in front of the girl, said 'No!' and pushed her in the chest. I know I shouldn't be proud of this, but I was. And I don't worry about her, she can take care of herself. Steven says it's better that Jamie doesn't realise when people are mean to him, that it won't hurt him if he doesn't know, but I'm not sure.

I told Steven how much I worry about him. Steven says that he heard on the radio about how all the most important stuff in child development happens in the first three years and maybe we just didn't do a good enough job. I almost got out of the car because this upsets me so much, not only because those first three years were spent with me, but because I've read those studies too. I remember just after his third birthday crying so hard to my therapist that those precious three years were over and I'd got it so wrong, that the damage was done and I screwed up an actual person, forever. That he'll struggle in life because I didn't do a good enough job. Late at night I hear him pad down the hall and climb into bed next to me. He curls around my head, he strokes my hair, he holds on to my ear and breathes into my neck likes he wishes he can become part of me again. I kind of wish it too.

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