It's a learning curve

I thought I'd learnt a lot about life growing up when my dad was ill, getting to, and finishing uni and working my way into a job I like. What I didn't realise was that you never ever ever stop learning.

Not just because you want to, but because you have to. To keep sane, cope and move on, you have to learn to adapt, change and take on new challenges. In the past year I've learn how to be on my own, keep calm, ask for help, give medicines (without panicking every time that I’m doing it wrong), negotiate with medical professionals and family and balance between being nice/pushy and out right annoying.

And now.....

.....well now I'm learning to drive. If there's one thing I could kick myself for, that's not learning to drive before now. Anybody out there who hasn't learnt yet and doesn't have any major responsibility yet - learn now! Honestly I'm so excited that one day I'll be able to pack up our things, shove them in a boot (instead of under the pram) and set off anywhere we want (without having to plan a major bus route across the city or rely on others for lift offers).

I can not wait :-)

The main thing standing between me and that dream is actually learning. I've had 5 hours so far and I'm doing ok, but it's tiring after 2 hours and I leave wondering what I've learnt. I want to record my instructor and repeat what he's saying 24/7. I'm writing this to take a break from revising for my theory test next week (fingers and toes crossed please). If I pass I’ll be able to book 8 lessons over 2 weeks which should help speed things up and get Jenna and I out and about J
Talking of the little madam, she’s just woken up and is blowing raspberry’s. She learnt to blow bubbles this week and giggle. I'm so pleased with how she’s come along this week, my brother keeps reminding me to push her more and more. He’s right and I hope the the child development and visual impairment specialists will teach me more way to help stimulate her development.
Right then I’d best go as it’s supper time, take care xxx

A beautiful poem

We've been visiting my dad, brother and neice this weekend which has been great. I know Manchester's not that much different to Leeds (and I love Leeds) but sometimes a change of scenery does you the world of good. I'm a member of a forum for Polymicrogyria (PMG) and read this peom. For anybody curious to know what it's like to discover that your child has extra needs here's a good way of describing it....

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.   

Take care xxxx

Hello

I should start by introducing myself. My name is Katy, in September last year I was blessed with my beautiful daughter Jenna.

Firstly I need to acknowledge that all children are beautiful and all parents are lucky (and bias). BUT, it;s essential that anyone reading this, (hi mum), understands that Jenna truly changed my world, she saved my life. She's not just my daughter, she's my angel.

I'm not 100% sure why I've started this blog. A little bit for myself, to vent and talk. A little bit for my friends and family, to keep them up to speed. And most importantly for Jenna, hopefully one day this may be useful for her.

So about us. I'm a single mum to Jenna who's now nearly 5 months old. When Jenna was 7 weeks old she was diagnosed with a cortical brain malformation which we think is a rare condition called Polymicrogyria (PMG). The part of her brain we know if affected (there may be others, we're waiting on another scan) is the parietal and occipital lobes. Children with this condition can have a range of other disabilities, some mild and some severe. So far we know Jenna has a cortical visual impairment. This basically means she has fully functioning eyes, but her brain can not interpret what she can see.

Jenna suffers from two rare forms of epilepsy, West Syndrome and Lennox-Gaust. She has approx 20-40 seizures a day and is on a pharmacy full of medication (I'm sure you'll find out more about this as i continue to blog). This may sound terrible but every time i read about another child with Jenna's condition or just the epilepsy i hate to know that we're usually the ones having the most seizures. It's been three months and we've tried 5/6 different drugs. We're no lost cause and there's plenty more to try but Jenna. I hear a lot of..... "she'll grow out of it"..... "her brain will repair itself"......."her brain will work ok, it doesn't need all of it"......etc etc. I know sometimes people don't know what to say, I just sound negative explaining that she won't grow out of it, it's a part of her and something we're all working on to improve her quality of life. I'm not negative about this, Jenna became my angel even before she came into this world.

We're waiting to start portage, next month hopefully. We're also waiting on referrals for the visual impairment team, child development, physiotherapy, specialist health visitor, OT and a carers assessment.

Well that's where we are to date. I hope this makes sense, i could go on forever trying to explain the last few months but my little miss is hungry. Take care xxx