A Crocodile Full Of Hope.

 

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Aubrees never shown emotional attachment to a toy before, she shows preference when playing she’ll choose what she wants but she’s never got the emotional side of wanting a toy to cuddle, if she had something that didn’t make a noise or light up she wasn’t interested!
Until this little crocodile came on the scene. We went to a Wildlife Park a little while ago and we always buy a little something from the gift shop whenever we go somewhere like that, and we always try to let her choose. Well everything there was too little and fiddly or fragile or was a stuffed animal that did nothing, so we thought we’ll just grab something and that’ll be our momento for that trip. I was looking at the Ty toys and picked up an owl and a crocodile, both of which we’d seen that day, and offered both to Aubree so she could choose. Now normally at this point she’ll show mild interest and then swiftly lose it preferring to nose at what other people are doing. She deliberately reached for the Croc and had a good feel of the material (with lesser seen fine motor skills woohoo!) and would not let him go, so of course we bought him.

Since then he’s been everywhere with us, to town, to the vets with our cat, supermarket shopping, Physio, hospital, he was even there when she had her surgery and MRI in April. She’s grown so attached to him words can’t even explain how happy that makes me, I’ve never seen her cuddle anything like this, and it might sound ridiculous but to make a connection like that takes some level of cognition and it’s just so wonderful to see. His name is Pippin and he’s here to stay 😊

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A Crocodile Full Of Hope.

What I Wish I Could Say, On Bad Days.

I’m not okay.

I wish I could say this. I want to so many times. When asked how I am. Instead my knee jerk response is “Yeah you?”And then I immediately segue into talking about you. Asking how you are. What you have been up to. Steering as far away from the subject of me as I can get. Because I don’t want to ruin a good conversation, because I don’t want to make it awkward, because I don’t want talking to me to be a burden. Because I want everyone to believe I am the strong invincible woman I pretend to be. Because I don’t want to seem weak and needy. Because I don’t want to cry. Because I don’t want to dwell on the awful fog that shrouds my brain making everything 50 times harder and much more exhausting. Because I think if I can convince myself it’s a good day, then the fog will blow away.

You see I can be fine, truly fine then it’s just like a switch goes off and all of a sudden I’m not fine, I’m not okay, I’m left with darkness in my mind that is all consuming. I forget how to smile, how to laugh, how to feel anything except the emptiness. I can’t connect with anyone on bad days, it’s like a fast rushing river runs between me and everybody else and even though I really do try, I just can’t cross it. Sometimes I become so engulfed in the brain fog that I completely shut down, stare blankly at something for much too long and won’t speak all day, I do the barest amounts I have to, I won’t shower, I won’t eat, or I’ll eat too much. Light seems too bright, sounds are too loud and the fatigue is hell. This exhaustion is not something simply resolved by sleeping, it’s soul deep. I seem lazy, the house is a mess I’m a mess I’ve done nothing all day because I’m just so tired, so severely overwhelmed with everything that even the smallest tasks seem like mountains.

Depression is cruel, there are no fevers, no rashes, no blood tests. Just the slow erosion of self, as insidious as cancer. And like cancer, it is essentially a solitary experience. A room in hell with only your name on the door.  I have been doing better recently, tablets are helping, I answer more honestly now if I’m not okay, it’s hard and shameful but cathartic. Bad days are few and far between, but always lurking on the periphery.

I am okay, and sometimes I’m not, but that’s okay to.

I must also have a dark side if I am to be whole.’ – Carl Jung.

What I Wish I Could Say, On Bad Days.

D (iagnosis) – Day.

 

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For the best part of 2 years we were lead to believe Aubree had Cerebral Palsy, for the best part of 2 years we grieved and grew and learnt everything we possibly could about CP. This picture was taken 1st April 2016 after my 3 year old went through her first surgery and second MRI on her brain, April fools huh? Several weeks later her neurologist offered us an appointment at the drop of a hat saying he needed to see us ASAP. So of course the alarm bells start to ring, what could be so different with these results that he needs to see us straight away?  We know her brain is damaged, what more could they possibly find?

As it happens it’s not what they found, rather what she lacked. He explained that you have 2 types of matter in your brain, Grey and White. The Grey is your actual brain cells and the White is the bits that connect all of your cells together, think of them as wires. Wires need insulation to conduct a current properly, the ‘insulation’ in your brain is called Myelin. Aubree has absolutely no White matter in her brain, she has no insulation, therefore her wires can’t conduct sufficient signals, hence her motor disorder.

This condition is called Pelizaeus (pel-ee-zay-us) Merzbacher (merz-back-er) Disease. It is an astonishingly rare progressive disorder of the central nervous system affecting co-ordination, motor abilities, and intellectual function. It is named after 2 German physicians who noted the presentation of the disease. There are less than 1000 cases worldwide. As it’s progressive our neurologist explained that she will learn limited skills until she reached 7/8 years old, then she will rapidly lose them. Alongside this she also has Global Developmental Delay, Seizure Disorder, Gastro-oesophagul Reflux Disease, Optic Nerve Hypoplasia and Postural Kyphosis.

So it feels once again like we’re in an ocean of uncertainty with this strange new diagnosis that no one has ever heard of, trying to stay afloat. Just when we thought we knew everything about her it ends up being something else entirely, all of a sudden everything is different yet nothing has changed. I don’t know what the future will bring, and that is really hard to live with. All I know is Aubree is the brightest, bravest soul and we are truly blessed to be the ones to raise her, and if she can fight through each day then we can to. Come what may, my beautiful girl.

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D (iagnosis) – Day.