Can't think of a title

and I cannot be funny. Tonight I took B back to school after the 8 weeks of her holidays. Holidays which we spent so much time together and I loved it. We laughed, we fought, I looked after her wounds and I just looked after her. Holidays that brought new medication, new developments - seizures and bad feet. She went back to a new boarding house, new therapists, new class etc. It appears she is not sharing a room and she is at the end the corridor. My heart just sank. Ok, I was verging on hysteria about her coming back anyway but this was a little too much for me to bear. B, she appeared to be ok, but I know her. Her new Physiotherapist seems on the ball, whisked her up to medical centre to examine her feet which have been hurting her. Seems she is developing pressure sores, her feet are ice cold and swollen. Wrapped her feet up and fitted her for a hoist sling and she will be hoisted for the time being. She will see the doctor in the morning.
I tried to make her room B friendly. High School Musical poster and her new quilt. The teddy bear I bought her for her birthday, her photographs out.

Time for me to go. She starts to cry. I cannot help but also. I leave as to stay would not help. I cannot drive further than 100 yards because I hurt so much. I want to go back and get her but I know I cannot. I cannot bear the thought of her feeling sad or lonely or of needing something or someone and not feeling she knows them enough to ask. I cry all the way home. At home, M holds me and rings up to see how she is. Even says we are disappointed about the proximity of her bedroom. They say she is ok and she is sleeping. I beg him to ask them to keep checking on her.

I miss her so much. I love her and want her to be ok. I hope she is ok. I am so very scared of not seeing her again. She is my B....I love you sweetheart.

Well done M

4 hours 31 minutes on his swiss, im running up a mountain, marathon. Was slightly disturbed when got a text from the automated system that tells you progress at 2 hours 48 minutes saying he had finished. That was near on impossible. Apparently it was a mistake!

Wish I was there with you to celebrate. Have a great evening and above all - SLEEP WELL!
Love you
Rx

The desperation of families of children with special needs

Why is it that parents/carers of children with special needs (and adults) have to get to desperation point before the services help? Our situation: Beth was still on her feet and it was hard work. She was battling with keeping upright and fine motor skills as well as the emotional difficulties we had to deal with. After going through some of the motions, our social services department decided we didn't demonstrate the need. Eh? I was rock bottom emotionally and physically. I couldn't go on. Asking for help is the hardest thing for a parent to do. It is not made lightly. To do it then to be told hey you are ok, is bull.

So why years on does it still seem to be the same? Every day I know people who are desperate for help, for respite, some time to relax. They love their children but they do not know how to cope. I can understand the mum who jumped off the bridge with her autistic son. She did not know what else to do. She was DESPERATE. I do not condone her actions but I can associate with it. Postcode lottery is the fact of our country. Why should it be? Everyone should have a right to help if they need it? And of course my biggest bug bear is those who have children with autistic spectrum disorders or behavioural issues. Why the services make it much harder for them to get help I do not know. It must be HARD! A child who smears their own faeces, a child who will not socially interact, a child who ignores you, others or screams/shouts for so many hours a day.. Why does that not warrant help? Beats me!!!

Most of us who have children with special needs do not ask for it. We love our children more than we can say, for like any child, they bring so much to our lives but we can't always cope with the increased demands. I just wish that it was recognised HOW difficult it is and people are given help before they get to the stage where they feel they cannot recover easily.

It is hard to ask for help. Professionals should remember that. And when it comes, it is hard to let your child go even though inside you know it is the right thing to do for all of you. Understanding of all of this needs to be paramount. I wish it was.

For my very athletic man

From me and Squeak Alot.

Good luck tomorrow on your marathon up that very large mountain - Jungfrau - in Switzerland.

I am sure you will do very well and we will be thinking of you whilst we are relaxing in our comfy house with our feet up with a glass of wine for me and an apple juice for SA. Oops sorry, loads of encouragement here, honestly..you will do just fine and enjoy those energy bars..

love you
Rx

One year on

and B is still getting headaches. They have gradually got worse and not responded to any preventive medication. Thankfully an MRI rules out tumour or water on the brain. Rest at school helps at school but episodes still occur at home. Fast forward to this summer. Her neurologist starts her on a drug called Topiramate which at is in higher doses used for epilepsy, in lower doses for migraine. So the start of the holidays, we start her on the small dose and gradually increase to the recommended level for migraines. In the meantime, she has those seizures and sickness, headaches on return home. So there is some thought by her neurologist that we may need to increase it up to the epilepsy levels. That is not what I want right now. But I say, last week, the good news is that since she has started she has only had those couple of headaches. Fast forward again to today, a pale wiped out girl, two headaches and a spontaneous vomit later over the course of a week.

What the h*ll is it? If its not responding to strong migraine tablets, is it in fact seizure activity? Migraines and seizures are often mixed up. What if in fact these migraines over the past year, are actually seizure related? Who knows?

What I do know, is it kills me to see her get so unwell so often and not know why? It scares me stupid and it is so exhausting watching and waiting for the next thing to happen. Because it always always does.

and then there is her ruddy feet falling to bits and causing her pain all of a sudden. Just leave the kid alone. Please.

Ok the cat is taking the mick now

I sit down to do my puzzle, the coast is clear. Then Monty decides to join me.

Thus marks the end of my attempt at doing some of it.

I'm not destined to conplete it.

Back to school for me

Donned my jeans and picked up my pencil case and started year two of my nursing course today. This year we concentrate on child nursing rather than generic. From looking at my lectures to come, it seems I may get to make a toy! woo hoo. Be asking those that are very creative for some help there I do think.

Got an A in my assignment on Adults with Learning Disabilities which I am obviously very pleased about.

and find out we go out on placement in middle November for 4 weeks, have 3 weeks off then back out for three weeks.

In the meantime I start bank auxiliary nursing with Epsom Hospital Monday. Get to wear a lovely light blue dress. Will soften it up with my Eeyore name badge I think.

end of day one of semester one of year two, I stumbled to my car with my arms full of big fat text books ready to get going. What's the betting they don't get so much as a flick through in the next few weeks?

I owe you a fiver.