A year on…

I cannot believe it is a exactly a year to the day that I started my blog and opened up my heart and shared our journey with our amazing and beautiful Daughter Isabella. A year. 365 days. It seems almost ridiculous that so much time has passed us by so quickly, but what a year it has been.

I started the blog initially, as a way of expressing my thoughts and in some cases venting. In fact looking back my first few posts do seem quite negative! But writing them really was (and is) like therapy for me. Once I had cleared out the clutter of negative thoughts and experiences, I was able to share other happy experiences and talk about the importance of family and friends. That is not to say I haven’t written any negative posts since, and sadly I think there will always be the odd few more often than not, depending on particular situations that we find ourselves in.

Once I had written a couple of posts I was addicted, it felt so good, so therapeutic, sorting and arranging my thoughts. Sifting through the good experiences and the bad. To start with my love affair with my blog was constant and regular. My blog was my companion while my husband was away. It was also his companion, as he had time to read through my thoughts and digest the information in his own time, without me babbling or shouting ( I am loud on Skype) and him constantly asking me to repeat myself, due to the connection on Skype being so poor. When my husband finally came home after four months away, inevitably the love affair became less frequent, as I now had my ‘other’ companion.

Whilst pregnant with Isabella I had written a blog from Isabella’s perspective inside my tummy. The blog although on the internet was not particularly publicised and was only read and followed by my family and close friends. This blog however has been different and taken on a life of its own. To start with my only followers were again my family and close friends. Then my new-found fellow SWAN Mummies began to follow me and then through the power of Facebook and Twitter the numbers slowly grew. It is strange to think that people in different corners of the world are reading about our special little girl and our journey through the unknown.

I know some people may think it is strange that I have my life with my Daughter on the internet and had you asked me a few years ago about sharing my life on the internet I would have laughed at you and thought you were mad. For all its negatives and downsides, such as internet trolls and cyber bullying the internet has proved it can be positive and make an impact. Over the last year my blog (and others like it) has raised the awareness of SWAN and children with undiagnosed medical conditions. It has made strangers and people I know understand a bit more of what life is like with a child with disabilities. It has made people understand that things aren’t always what they seem. It has made people realise that how they act and behave in certain situations (intentional or not) can have a devastating impact on other people.

I am not saying my blog has reached the masses by any means, but it has reached a few people and made them understand a bit more and in turn tell other people. Through my blog I have also had people interested in raising money for SWAN and interested in the classes that Isabella goes to.

When I go to classes with Isabella, I always tell the class teacher to share my blog via e-mail so that people who feel uncomfortable in asking questions can understand more about Isabella and her difficulties. It also means that I am not bombarding strangers with a long, shortened version of Isabella’s journey. My blog acts as my voice.

In the last year Monkey’s journey through the jungle has been a long one. When I started the blog Isabella was undiagnosed and I had only just discovered SWAN. Now Isabella has her diagnosis of Polymicrogyria and quite frankly I couldn’t imagine my life without the support of SWAN and more recently my fellow Polymicrogyria (PMG) Parents.

We have also completed a sponsored swim in aid of SWAN and been interviewed twice on BBC local radio and appeared in the local newspaper.

We have been to hospital on several occasions for several appointments including;two eye tests, two EEGs, an MRI Scan and had bloods taken. As well as a check up with the Pediatrician, a genetics appointment and Neurologist appointments, including a referral to Great Ormond Street, where we were knocked for six with an unexpected diagnosis.

So a year on and my amazing Daughter has continued to inspire me with her strength, strong will and determination. She has dealt with all that has been thrown at her. She isn’t walking yet, but she is now weight-bearing, which a year ago was something she wasn’t able to do. Isabella is the reason for my blog and the reason I stand up, fight and speak up for her. She is my world. My amazing little girl, my special little ‘Monkey.’ xx

Good Night Sweetheart….

“Good Night Sweetheart well it’s time to go,

I hate to leave you but I really must go,

Good Night Sweetheart, Good Night.”

When I hear that song it always makes me think of the film Three Men a Little Lady. I love the way they place her in her cot and all three men look lovingly at her, as she lies there peacefully and blissfully asleep.

I absolutely love putting Isabella to bed and it isn’t because Isabella has driven me mad all day and I need a break. It is because at night, in the quiet moments in the dark, as she slowly sucks on her bottle and is falling asleep, she is in finally in control of her body.

You see in the day, Isabella’s body controls her. It is like she is trapped at times in her own body. She has her involuntary hand movement with her right hand, where 3 – 4 times a minute it rises up in the air distracting her from what ever activity she may be doing. For example if she is sitting (which she can manage very briefly for a few seconds) once her hand goes up she topples forward, as she no longer has the hand she was propping on for support.

Then there is her right hand which she bites when excited or frustrated. The only way to describe is, like she has been wired up wrong, so whenever she laughs, is happy or excited she bites her hand. It is hard as a parent to watch your child bite her hand and see her make it sore. She doesn’t draw blood, but it is red and sore looking nevertheless. She doesn’t cry it is just her very unusual way of expressing emotion, but one of the many things I would like her not to do. As a parent it is extremely difficult, as you don’t want your child to bite her hand, but something as simple and as loving as kissing her makes her do it. The more happy and excited she gets, the more frequently she bites and the same goes for when she is frustrated.

To add to this she has hypertonia in her arms. Hypertonia means high muscle tone. The high muscle tone in her arms means there is too much tension in the muscles at rest. The muscles are tight and tense even though they are not doing anything.

Her legs have variable tone, sometimes they are tight at other times they are floppy, but for the most part like her arms they are very tight. Her toes are usually curled and tense also. Throw into the mix an unexpected noise and her body borders on rigour mortis.

So you can imagine how nice it feels for Isabella (and me) when her arms are relaxed at bed time and no longer tense. Her legs laying gently over mine, not a tense muscle in sight, listening to her lullaby softly playing with her hand gently stroking my face, sucking gently on her bottle, with no involuntary hand movements or hand biting in sight.

Before she finally nods off she snuggles in close for a special bed time cuddle, head cwtched in close under mine, hands on my neck and face. Now I am able to give her lots of gentle kisses and cuddle her relaxed body. Like the song says, I hate to leave her as, I love this time of the day where she is relaxed and at peace. I lay her gentle body down in the cot and watch her sleep peacefully and blissfully….Mummy’s little Sweet Heart x

Everchanging times..

I think most people live their lives with the mindset and attitude of ‘That will never happen to me.’ I know that I did. It was not a deliberate way of thinking, it was the way I was. Nothing phased me or scared me. I guess it was an age thing too. I had seen things on the news and read about things in newspapers; sad stories about people dying in car accidents or having life threatening illnesses and conditions. These stories touched me and made me feel sad but they never worried me.

I was like most young people happy, worry and care free. I left home at 20 to become a Holiday Rep. During which time; I drank more than I ate. What I did eat would horrify any Dietician. I partied more than I slept. The sleep that I did get was usually was fully clothed in the previous nights attire or on the beach caked in tanning oil. On nights out I tottered around on 4 inch heels that crippled my feet and when the pain became all too much I removed them and would stomp around outside barefoot. I speedily rode my moped more times with my helmet off than on. When I did walk I would always hastily cross the road on red. I did all of this without a worry and a care in the world. It was fun. I didn’t see any danger.

Fast forward 12 years and I am Mother and suddenly I see danger. I see pontential danger everywhere. I am Mother who gave birth to a beautiful baby girl without any complications. I am a Mother who never once thought that the beautiful child I had would be severley disabled. So now I have tilted my view of the world slightly. I no longer think, that won’t happen to me or us as a family, because it might. That is not to say I am now a real pessimist and view everything as the glass half empty, as that is definitely not the case. I now just air on the side of caution and opt for the safer option.

I still party, just not every night! I am lucky if it is once a month! My sleep is no longer governed by me, my little monkey decides how much sleep she feels Mummy needs and for the most part it is a bit more than I used to get!

I try to eat more healthier, but think ‘Everything in Moderation’ is generally a good rule to live by. I no longer use tanning oil, instead lather myself up in Isabella’s 50+ sun screen! I no longer sun bathe, we just take strolls in the sunshine. If I feel I need to add a bit of colour to my life I will now fake it rather than going to a Sun Bed.

I most definitely no longer ride a moped and I am extremely careful in the car now that I have finally learnt to drive, with all speed restrictions adhered to.  I cross the road with extreme caution and never cross until I see the Green Man.

As a parent you have to change and see potentials dangers that are around you and your child. I have to choose the safer options to protect my family. To some the idea of no longer sun bathing or going out in the sun with 50+ protection sounds extreme, but thousands of people a year are diagnosed with skin cancer and I cannot afford to take such a risk.

My first thought now is no longer me it is Isabella and my family, so if something doesn’t look safe or isn’t quite right I/we avoid it. It may mean taking a little long to get somewhere, as we wait patiently for the Green Man or drive safely rather than speedily, but Isabella’s safety is our concern and my family’s safety is my concern. It chills me to the bone when I think about families that lose their child or a child that loses their parents.

It really is strange how things that happen in your life can change your view or outlook for the future. I know that the bronzed Crazy Tracey the Holiday Rep tearing around on her moped, hair flying wildly in the breeze, can of Red Bull in her bag, planning her night out in her head, with a raging hangover and only two hours sleep would never have thought that she would become so sensible. Well not THAT sensible, as I on my nights when I do party I still do totter round in 4 inch heels and yes admit to having to take my shoes off when the pain becomes too much, which I may add is much, much sooner than it used to be! Then more often than not I have been known to go to bed fully clothed like the old days, waking up looking like the newest member of Kiss! Some things NEVER change…

When the bubble bursts…

A few months back a SWAN Mum coined a phrase, that we grew to love. She said how she liked living in her ‘bubble’ with her family.  Inside the bubble it was just her and her family, without any outside influences.

We love our living in our bubble too. Inside the bubble, it is warm, cosy and safe. Life inside our bubble suits us. It is just Isabella, Paul and I and of course our Dog Daisy. Inside our bubble, we know what Isabella cannot do, but we don’t dwell on it. We wholly embrace all that she is able to do and we give endless praise to achievements that may seem the smallest of things to an outsider.

Life inside our bubble is peaceful. We know each other’s boundaries and constraints. When it comes to Isabella we know what works and when it’s time to stop. We understand the many faces, the cries and the moans.

We have our routines and quirks, the things that work for us a family. We do things in certain ways because they work. We also do things in certain ways, because for the moment that is all we can do. We take things one step at a time, one day at a time. If it’s not right for us as a family or Isabella, then quite simply we don’t do it.

We float and bounce around in our bubble quite happily, until without warning it suddenly bursts. It is sometimes the smallest of things, something that may seem like nothing, but it bursts the bubble nonetheless. On occasion it may be something that we see. A good example of this was when we were hit with the flurry of snow in January. I saw children of all ages out playing in it. It was the children around Isabella’s age that I was somehow drawn to, watching them run around, throwing and dodging snowballs, being pulled on their sledges and making good old snowmen. I didn’t cry, it just caught me by surprise. You see I never give up hope and think one day who knows, how ever old, that could be Isabella.

Then other times the bubble may burst because of what we hear. Sometimes it was meant for our ears other times it is overheard. People naturally are drawn to children and very often they stop and speak to Isabella. It is usually her involuntary hand movement, (which actually looks like the Queen waving) that gets their attention, as they think Isabella is waving to them. They come over and say hello. They pause and wait for Isabella to reply, then ask her if she is shy. They pause again and ask her her name and smile at her waiting for a reply. Isabella smiles and looks to me and back to the stranger. I then tell them, ‘It’s Isabella.’ Now armed with her name they resume the conversation with Isabella and ask how old she is. I say, ‘You are 3 aren’t you Isabella’. At this point the conversation goes one of two ways, it either ends very awkwardly, very quickly when I explain the fact she is severely disabled and unable to talk. Or it gains their interest and sparks a number of questions; ‘Will she ever be able to walk or talk?’ ‘How did it happen?’ ‘Will she get better?’ and several other questions along the same lines. Like I always say I am happy to answer questions and raise people’s awareness on children with Rare Genetic Conditions. However there are days when these questions affect me more than most, days when I don’t want to answer them, days when hearing myself answer the questions makes me feel a little sad. These days, rare as they are, most definately take me by surprise and most definately burst my bubble.

On occasion we over hear things, a tut or cutting remark. They are not directed at us, but made clear that they were meant for us. The tuts are usually when Isabella is having a melt down and distressed and are usually followed by a comment on our poor parenting skills. Then on occasion it is an unintentional comment that can be cutting. It may be a simple phrase in one of Isabella’s groups, like, ‘Now that all your little ones are walking….’ Now I don’t expect anyone to give Isabella special treatment or draw attention to her, it is merely an example of how simply and unintentionally the bubble can burst.

How and when the bubble bursts can vary greatly. Sometimes I feel that our bubble and other bubbles like ours would burst less frequently if people were made more aware and understood that not all disabilities are visible at first. That there a variety of disabilities out there, some very, very rare and others that still remain undiagnosed. It is something that parents like me are constantly doing through sharing information on blogs like my own, organising fundraising events and talking to passers by when they ask questions. Even with more awareness and understanding from the general public, our bubbles will invariably always burst from time to time, as EVERYTHING around us has the potential to burst them. Some days they will side swipe us and pop the bubble with an almighty ‘bang’ other times the bubble will wobble a little but still continue to float along nicely. But each burst bubble makes us stronger and helps us prepare and deal with the next one….whenever that may be…