WHAT ISLA WORE

Spring is here! The children love all the blossom. Dylan has learnt about triangula prisms, Isla ha started doing yoga with me, Dylan has started to watch Star Wars and loves it and Isla has a new wardrobe of beautiful things to show off  that I am dying over but they aren't practical at all (hello sequin shorts!)

But first one of the outfits she chose a few weeks ago (bevause God forbid I choose her clothes anymore)

Coat and tutu - next   T-shirt - Dylan's hand-me-downs

Doctor Martens -  £50 Schuh (also Dylan's hand-me-downs. Honestly investing in good/tough footwear is such a must for me as their feet grow really slowly. There's have been worn to death by both children and they're still in such good condition)

Horse necklace - £1.99 h&m

I LOVE these photos. She has so much sass and such a beautiful smile. 

SMART TRIKE BREEZE - 3-IN-1 TRIKE

We hadn't been planning on buying this trike, we hadn't actually been planning on buying a trike at all because Isla had a trike. Had being the operative word, it was stolen yesterday and as it was a suggestion from her physiotherapist it seemed important to replace it ASAP.

She used to have the Little Tikes 4-in-1 trike in purple and I have to admit I really liked it. But it wasn't in stock at the moment and I wanted a new trike now. And despite it being a Sunday I was able to get one thanks to Argos who offer a same day fast track delivery service, seven days a week on many of their items that starts at just £3.95 for a small item (a bike counts as a small item.. Amazing). Welcome to the twenty first century.
So her new trike the Smart Trike Breeze 3-in-1 was delivered last night and I put it together this morning before the school run. I was expecting it to take a while as Dylan had a trike from the same brand a few years ago that took three people to successfully make it on Christmas Day but it was really easy and only took about twenty minutes and that was with Isla helping and Luna trying to steal the instructions. The only thing that took me a while to figure out was how to make the parental control work for the steering, but again it turned out to be a super simple click of a button, Luna had just successfully managed to steal the piece of paper that was written on.

Once it was put together it was a lot smaller than her Little Tikes trike. Sometimes I'm out off by smaller trikes because they seem less sturdy or the quality isn't as good but this trike is perfect. It's just the right mix of a sturdy, chunky base and leaner handles with a slightly smaller seat and basket. Not only does the smaller size suit Isla a little better being able to get on and off with more ease but it also takes up less room in the hallway where it's currently sitting (no more leaving it hidden in the front garden for us, no matter how many times we use it in a day). For some people I can understand that a smaller convertible trike may be less than ideal. What is the point of a trike that can change as your child grows if your child is just going to outgrow it? However with Islas mobility being limited due to her diplegia a smaller trike that she can use now matters more than how long it will last her.

       

The basket on the back is something I'm a fan of as it has a lid. Isla likes to carry things around, she's a bit of a bag lady really, and having the lid on the back of her basket means that if she forgets things in there they won't be ruined by the weather or stolen by the dog. It does of course restrict what we can carry, on old trikes I could use the basket like the basket under the pram and put a bag or jacket in there and now of course I can't but there are pros and cons to everything I guess.

Speaking of cons, the biggest of found with this bike so far is the steering. When I was looking at it online it seemed quite swanky to have touch steering. When I put it together I was sure it was broken because the handle wouldn't turn. When I finally worked out how it worked (touch steering was probably a clue to why the handle wasn't turning) I almost killed Isla several times on the school run because I couldn't steer the touch steering. I found it really difficult! Except loads of the reviews on the Argos website talk about how easy it is to steer so maybe I just need a little practice? I'll start with tomorrow's school run and hope for the best.

   

Islas favourite thing about the trike is the colour, it's the brightest of pinks to the point that it borders on being vaguely day-glo. And somehow even though it should be giving me a headache I really like it. I suspect this is because it's contrasted by the gun metal grey of the metal body and handles.

I really liked her old trike and I'll admit this one is still growing on me especially as I'm having trouble with the steering. Non-touch steering was a lot easier.
However this trike while a lot smaller feels a lot sturdier. I feel more comfortable going up and down curbs and up and down the step from our front garden to the street. The bright pink is far less jarring than I had expected to be, I actually really like it and Isla absolutely loves it so I can't argue with that.
Overall the pros with this trike far outweigh the cons and given that I didn't find any reviews written by parents who had lost control and pushed their children into oncoming traffic I am assuming that I'll get the hang of this touch steering business pretty fast.


If you missed any of the links above you can find the trike in Argos here
You can also get it on amazon here
But I would definitely recommend Argos if you're looking to get hold of it (or anything else) fast. Same day delivery for £3.95 you can't go wrong.

WHAT IS CEREBRAL PALSY DIPLEGIA ANYWAY?

Trying to understand Isla's diagnosis was pretty challenging at first, especially as her neurologist didn't actually mention that diplegia is a form of cerebral palsy. So that was a shock when we wound up on Google to do a bit of research.
Mostly I think I understand things now, at least the how it happened and a vague and general idea of what Isla's development and mobility will be like ish.
Trying to explain to Dylan proved to be a lot harder than I had anticipated, we ended up having quite a deep conversation about how, if Isla's brain was a bit hurt was it not hurting? And was I sure it wasn't hurting? Which if I'm honest sent me into a mild panic because those are questions I cannot answer because the answers we've had thus far go sort of like this "maybe", "I don't know", "we can't tell", "it's possible", "blah blah blah".
So I'm trying something new, something simple and factual that hopefully captures the imagination enough for the information to sink in.
I made a comic.
I was going to call it Diplegia for Dummies but decided against that last minute so for now it's just the answer to the question: What is cerebral palsy diplegia anyway?

WE NEED TO TALK ABOUT DYLAN

Things with Dylan have been difficult lately. I've written about it in a loving, lighthearted way but in honesty there have been so many tears on both sides. We have all been struggling with his behaviour. And not just his behaviour, he suddenly had a huge regression when it came to wetting himself. It happened so many nights that I had to find extra bedding for him because I couldn't keep up with the washing demand along with everyone's clothes. It's been pretty miserable and we've been struggling to understand why.
He had parents evening at school recently and he got a shining review, doing well in school, progressing, polite, confident, well behaved and one of the most popular boys in the year group, "everyone loves Dylan, they all want to play with him". So it seemed school wasn't a problem, nor does it seem that he's having any difficulties when it comes to his learning that could be a source of frustration.
He is excited about his dance lessons, loves his friends there and the croissant and hot chocolate afterwards. He is doing so well and gaining so much confidence in swimming which he is so excited about and so so proud of himself. He's excited about moving into the next group up in football after his birthday and he wants to start some form of martial arts. He's stimulated and enjoys it immensely, not to mention has a blast with his friends there.
In general, terrible behaviour aside he is never in trouble, gets what he wants within reason and I've always been so incredibly careful of how I talk to him because I never want him to feel as though I'm looking down upon him or for him to fear me. And yet his behaviour recently has brought me to tears - normally while he is screaming, shouting up in his bedroom.

And I've searched high and low for reasons. Forums are full of parents discussing the four year old testosterone surge but then I dug a little deeper and there's no scientific evidence that it exists. I wrote here that Harrison and I thought that maybe we clash because we're so similar, I thought maybe Dylan was dealing with an anxiety that I didn't understand so needed control but control paid with a four year olds logic meant wild tantrums when he didn't get his own way. I thought that I was missing him being bullied or him being scared of an adult teacher of family member because he would fly off the handle whenever I tried to get him to leave the house.
And I've tried everything, talking calmly, giving him space, trying to reason with him, time out, cuddles, bribes, behaviour charts and shouting. They all resulted in his anger intensifying, his shouts getting louder and louder as he told me that he hated me, threats to hurt me and at one point himself and the occasions where he would hit and kick genuinely scared me because I couldn't calm him down. I couldn't make him happy and I couldn't understand what was going on. So I cried. And he cried. And screamed and threw things and stamped a lot.

But now I think I understand, and I'm heartbroken, guilty and angry all rolled into one.
I think he is struggling with Isla's diagnosis. I think he's confused because he doesn't understand what's going on or what is wrong with her or what on earth Diplegia Cerebral Palsy is. I think he feels alone because he doesn't understand but also because we've been taking her to more appointments than usual as well as her hydrotherapy. I think he feels left out because a lot of the time people are talking about Isla, I'm explaining her cerebral palsy diagnosis to everyone we see and then comes to conversation about what it means. People ask how she's doing and comment on her achievements because they're aware of her disability. I think he struggles with how much praise Isla gets in comparison to him. If she turns around well or walks sideways or even walks down the hill she is congratulated and praised because they're so difficult for her but he doesn't understand that and he doesn't get the same level of positive reinforcement because in a way there is less to give, he is more able. I'm scared he thinks we don't care about him anymore.
That couldn't be further from the truth. I love him so fiercely and I'm so proud of him every day, and I'm proud of him for how he has given his time with me so I can help Isla when she needs me. But I'm worried I haven't fully realised the impact that's had on him.
It breaks my heart to think that he may feel this way because he is so, so loved by so many people. And I cannot bare the thought of him not realising or feeling that.
I feel so guilty because I didn't realise the impact this would have on him. Nor have I taken the proper amount of time to talk to him about Isla's disability and what it means for all of us and most importantly for him. I haven't dedicated more time to him when I should because he needs and deserves it. It can be so difficult when it doesn't feel like there are enough hours in the day to get to everywhere we have to be and do all we need to do. But he is more important than that feeling and I haven't treated him that way.
I am angry because once again cerebral palsy is sticking it's nose in where it isn't welcome and the outcome is miserable and angry and scary. And I'll accept that it's probably because it's all so new and we're all finding out feel but how dare it do this. It makes me so angry.

But I can't let those emotions cause any more damage than the situation in itself has already caused. Dylan needs me and it's my job to figure out how and what I can do to help him.
And I truly believe it will only be little things, remembering to tell him I love him more, an extra half an hour with me after Isla goes to bed even if it means he goes to bed a little late, date days with just the two of us and more conversation. Starting with a proper on about cerebral palsy.
On Friday I'm picking him up from school and as long as the weather is nice (ie. I'll probably still freeze half to death but Dylan will be fine and it's not raining) well go to Greenwich park before we go to a posh restaurant (pizza express) for dinner. Just the two of us. I'm excited and sad at the same time because I hadn't realised how much I miss our Dylan and Mummy dates and it's been such s long time since we had one.
And I'm hopeful, I'm hopeful that although it's upsetting, I'm right. And that this will help.
When it comes down to it I am a mother. I love my children with such an intensity that it pulls me through the darkest times with my emotional and mental health, something that has never been possible before. I love them and I am so proud of both of them because truly they are beautiful, free spirits who are compassionate and have a spark of adventure in their hearts. I am a mother and although my children have beautiful souls children can be a bloody nightmare. We have hit many
bumps in the road and there will be many more. It's inevitable that we will all cry more tears over things I haven't even imagined yet. And it's my job to love them and support them through all of this. Even if it makes me scared or even if I cry. My guilt, anger or fear of the unknown cannot hold me back when it comes to giving them what they need.

And Dylan is my first, I have made all my mistakes with him and learnt how to parent, and also how to be a better person. He has given me so much, brought so many people so much joy, he saved my life. This is another learning curve, it makes me sad that so often he seems to be the one I make mistakes with, but he is my first. Everything is new with him even as he continues to bloom.
Right now we are all struggling but I have hope and so much love in my heart again after feeling rather scared and hopeless.
He disagrees, but he will always be my baby (what a mum thing to say) and I think maybe we need to reconnect. Bond again like we did so much when he was new. I need to understand him and help him understand what's going on for all of us. And reassure him. Reassure him that it will be ok, that everyone has time for him.
Reassure him that he is loved.

ISLA'S DISABILITY FEELS NORMAL

Sometimes I forget I've already raised an able bodied child. Which is not to say I forget Dylan, but just that Isla's disability seems completely normal.
Normal is a funny word because it has so many negative connotations attached to it. In this case there's nothing wrong with normal and I'm not saying disabilities are abnormal. Normal is just how it is, how it's been, what I know and I haven't known any different.
Except of course I have.

Dylan was walking before his first birthday and when he walks he walks normally. His range of movement is as it should be with no catch or paralysis coming into play. When I look at photos of him walking his stride is always normal.

In comparison Isla has never walked normally. She has a full range of movement but can't use it when walking. Her stride isn't normal although you can catch a photo where it looks as if it is. She stomps. Because she can't swing. And there's nothing wrong with it at all, in fact the only time it seems to pose a problem to her is when she wants to wear a floor length princess gown and the hoop skirts get a bit in the way. Disaster.

But Isla's stride seems normal. The fact that she can't jump seems normal and that she's almost three and still relatively unstable. Even when I see her with other children her age and her disability becomes very apparent in contrast to them, she still feels like my normal.
A lot of the time I struggle to remember having a child who could run and jump and kick. And the fact that Dylan does now (of course because he always has) doesn't seem to change the fact that I can't really remember him being an able bodied toddler. Not that I look back and picture him with Isla's disability.
I suppose that's a good thing really because I suspect that if I could remember to compare I would be pretty sad. If I could compare the things that Dylan could do and how much he enjoyed them it would upset me a whole lot more that Isla can't and maybe never will. It's upsetting enough that she can't jump in puddles when she really wants to, it's worse now I'm thinking about a three year old Dylan doing it.
Maybe that's why I can't remember. A combination of self preservation and motherly protection over Isla. But then I feel guilty and resentful. Guilty because I'm struggling to remember Dylan as he was and as a mother I should do better than that. And resentful towards cerebral palsy because it shouldn't
be here in the first place let alone be interfering with my memories of my son. Hasn't it already barged in and done enough?

Now I've typed that out I think maybe angry is a better emotion. It's not just memories I'm struggling with but emotions too. So many of the all geared towards cerebral palsy. The aforementioned anger over its unwelcome presence, at its looming threat to interfere with Isla's dreams and happiness. Because life is hard enough without a (possible)wheelchair, and having to plan journeys in extra detail, and having to do extra extra work with schools and ballet teachers and whoever else. Life is hard enough without having to explain to people what's wrong and why and what it means especially if they're judgemental or difficult. The sadness when I see how much she loves ballet right now and knowing that it might get in the way of that or anything else she might love, or when I think of the fact that it's just not fair at all. I'm sad for her. The guilt, so much guilt. And now this new guilt because I've realised my memories of Dylan seem further away. But then I have guilt because I want it to go away, I don't want it to be a part of her future but if I take it away I take away part of her. And she's perfect as she is. Fear because I'm scared of getting it wrong with Dylan but Isla is different and she's going to need more and what if I'm not enough? What if I get it wrong with both of them because I can't get it right with Isla? There's frustration, heaviness, impatience, hope, despair, confusion........

Isla's disability has changed so much, it's changed me and it's changed how our family work and think and maybe how I remember things.
And this is probably the least of my problems, not being able to remember raising an able bodied toddler. But it feels like a big deal right now.
Everything feels a little raw and extreme right now because it's so new or at least the finality of it is new. And these little things are unexpected so when they happen I have no idea how to deal with them or if I even have to deal with them. Is my faulty memory a problem or am I making it a problem? Or is it possible that this is just a thing that happens with second children? It's not as if I've done this before to compare.

But like I said, it makes this easier, I've always sucked when it comes to comparing milestones and party tricks. And anyway it's not as if I've forgotten Dylan or any of the important things, nor the funny moments or the things he taught me or surprised me with. I still have my memories and about a million photos to go with them, I've just forgotten my old normal. I have a new normal now, we all do, it's just learning how to adjust to how I feel about it that takes a little work

   

I DONT WANT MY DAUGHTER TO BE DISABLED

It's difficult to talk about how I feel about Isla's disability without sounding prejudice or discriminative. When my emotions clashed with my morals and world view I found it difficult to articulate exactly how I felt because so often I'm contradicting my views and opinions on a very basic level.
It's taken a little while for me to realise that it's ok. And also that I'm not suddenly an awful person for saying that part of me is devastated that my daughter is disabled because that is one of the last things I would ever want for her.
See, that sounds harsh.

Fact is, I am legally disabled. So in a sense I suppose I have some insight into how her world will be although it's extremely different on a multitude of levels. Thank God.
I hate my disability. I resent it. I am angry and bitter more than I care to admit. I hate my disability. I hate the limitations it gives me now but more than anything the things it took away from me. And more than any of that I hate how invisible it is. I hate how people treat me both before and after they find out I'm disabled if they think I'm trying my luck jumping a queue or selfishly taking up a priority seat in a bus.
And I hate that my daughter has a disability. Because while there is nothing wrong with disabilities it is not what I want for my daughter.
Of course I don't want her to grow up in a world full of more limitations. It's bad enough as it is. We can work around them, and of course we will. But I don't want to have to work around them because I don't want her to have them. I want her to feel limitless not limited.

It's unfair.
It's really unfair and that makes me want to kick and shout and break things because I am a mother and God forbid anyone hurt one of my children. Or take something from them. Or hold them back or stop them or try to dim their light.
Most of all it makes me want to cry. But I'm scared that if I start there's a very good possibility I won't stop because there are reminders of my fear and my guilt everywhere.
At Isla's ballet lessons, where she doesn't seem any different now but in a few years when they're no longer two year olds with no grace her disability might hold her back. And then what?
Or when she tells us how she's going to run "So fast Daddy!", and we agree but somewhere in the back of our minds there's a voice that pops up (I'm hoping this will go away after a while) that
reminds us that while its hopeful that she will be able to run it's unlikely she'll be fast, or able to keep up.

    

My experience with disability is different. Isla was born with Diplegia Cerebral Palsy, it will always be there as something that builds her character, helps her grow as a person but also limits her in some ways. I wasn't born with my disability, I was fourteen and my body stopped working properly. My disability changed my life and took away a huge part of my identity. Being told that if I continued to dance I would end up in a wheelchair by twenty five put an end to so many of my dreams that I floundered for years afterwards not knowing how to cope. It left me angry and bitter and constantly at war with my stupid broken body. It's really only within the last year that I've accepted it properly and allowed myself to let go of the negativity and resentment I held towards myself.
I can only hope that growing up with her disability Isla will avoid this anger. It crushes me to imagine that she would ever feel such an intense hatred towards her body, or that she may feel that she or it is broken.
I hope that she will never feel that people are proud of her accomplishments in spite of her disability. And that no one will view anything she does that way.
Or treat her as anyone less than she deserves.

Maybe that is partly why I don't want my daughter to have a disability. My own experiences leave me fearing for her happiness.
But even if that weren't true, I still wouldn't be OK with this.
I would still want to kick and shout and break things. And cry.
It still wouldn't be fair.
It doesn't matter a single iota how I view disabilities. Or in fact how I feel about them. Because when it comes to my daughter there's all this anger, frustration and guilt.
And sadness.
I'm not ok with it yet.
That's difficult to admit.


But I also wouldn't change it.
If I take away her Diplegia I don't know who I'll be left with.
Isla's disability doesn't define her in any way shape or form but it is part of who she is. It's part of what makes her unique.
Part of the makeup of her personality which is A*.
She's strong, resilient, determined, focused and smart.
Her sass and cheekiness keep us on our toes almost as much as her flair for the dramatics. The only person I know who's more dramatic than Isla is her brother.

     

If I dive in in my Super Mum costume and try to fix things, try to right these perceived wrongs and help level the playing field once more by taking away her disability I'll lose some of that spark.
And that's hard. All of it's hard. Writing this post was hard. Especially because figuring out how I feel is hard.

But I need to practice a little patience (this is really not my forte. Patience is absolutely not a virtue, I don't like waiting and uncertainty, it makes me anxious). All of this still has a rather large question mark hanging over it. We won't know until the time comes what Isla's limitations will be. We won't know until the time comes that her dreams and passions will be. We don't know and there's really no point in guessing.
For now we're adapting out life on the small ways we can to make things as easy as possibly for Isla while not stepping on Dylan's toes.
I hope that it will get easier. That the anger and sadness will fade and I suppose it's inevitable that it will.
But I don't think I'll ever really be ok with it. But that's ok.
Because I'm her mum and I want to give her the entire universe and nothing will ever be good enough when it comes to what I want them to have, their happiness, their freedom.
I don't think I'll ever want my daughter to be disabled.


But I'm at peace with it.

Anyway, nothing could ever change how much I love her.