Tag Archives: Snowflake Appeal

Good News Friday #31 and #32

Yes, Good News Friday was overlooked last week. Blame Katie Price. I was so deeply upset by her ill-judged interview with Radio 5 in which she condemned many parents of disabled children as too ‘lazy’ to access the resources they needed, that when Hayley at Downs Side Up set up a linky, well, I had to address that rather than focus on good news.

But there has been some. Lots. So much, in fact, that this going to be an edited highlights and I will flesh out some of the other stuff (like what Boo’s been up to in conductive education) for other posts next week.

Sissyboo

My fabulous no-so-little girl turned 6 this week. It’s been a week of celebrations, with presents and a family tea with just us four Boos on Wednesday, veggie hotdogs and cheesecake (not all at once, you understand) and a party with a few school friends tomorrow and grandparents and the little Boo’s favourite female other than Mummy, my sister. She really is in a good place at the moment in terms of Boo and the way she wanted to share him in all her birthday fun (getting him to help unwrap presents and blow out the candles – two things that are very difficult for him), well, let’s just say it made my day.

Boo

Well, I leave you hanging on what’s going on with Boo at conductive education. One for Small Steps Amazing Achievements next week, I think. But things are slowly coming together with equipment. His standing frame unexpectedly arrived about an hour ago. And after nearly breaking my back to get it into the kitchen, it’s all ready to set up. Even more exciting, his chair arrives next Tuesday and after many months, our wheelchair services referral came through for him to be assessed for an adapted buggy. All of these things will greatly improve his life and ability to be included in games, meals and things most of take for granted. It has been a real battle, but it’s coming together. 

The blog

OK, so first a post of mine in support of Home-Start’s fabulous Snowflake Appeal got put on the Good Housekeeping website, and tweeted about by Kirstie Allsop. Then I won a blogging competition! I am still gobsmacked about it. I am very proud to be a member of the Mum Network Trusted Bloggers Club and a few weeks ago I entered an autumn carnival on the theme of ‘The Juggle of Modern Motherhood’, where I wrote about a day in my life. It was an entirely real day. The carnival had some amazing entries and the fact I won (and won a ticket to Britmums Live) is just astonishing to me. Now I just have to work out how being a secret/anonymous blogger works with attending a blogging conference. Answers on a postcard please.

World Prematurity Day

The big news this week is that it’s World Prematurity Day on Sunday. This time last year, I was too much in the thick of prematurity to think about contributing to the day, but this year, I have written a post on Bliss’s wonderful theme of The Impossible Hug and a post where I try and explain what prematurity means to me. called Why Prematurity is Like The Matrix. I’m also very much looking forward to attending a reception highlighting research into prematurity hosted by Tommy’s and Bounty at the House of Commons on Monday. I’ll let you know how it goes. Now, do I have a frock that still fits…

OK, over to you. I’d love to hear your good news this week. 

And please, this weekend, do spare a thought or any pennies you have for any of the leading charities working to prevent pre-term birth or fund special care for some of the 15 million children born too soon across the world every year.

 

 

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Vulnerability Comes in All Shapes and Sizes: Supporting Home-Start’s Snowflake Appeal

snowflakes

If you have read this blog before, you might know that my family has benefited greatly from the help and support of Home-start, a service which, for forty years, has been providing volunteers to spend a few hours of the week in the home of a family with young children to help ease them through difficult times.

I was first introduced to Home-start by a Health Visitor last January. I was a mess. Just when I was coming to terms with the likelihood that Boo had cerebral palsy and would likely struggle to attain most of his motor milestones, we were hit by the bombshell of infantile spasms. By early January, the seizures had stopped, but the anxiety (of worrying every time that he went off to sleep that he would wake to seize, that he would regress and lose those few  milestones he had met, that life would never be OK ever again) was excruciating. It was made worse by the steroids that stopped the seizures. My lovely, good-tempered boy turned into a hyper-agitated, screaming machine, with an insatiable appetite and acute insomnia. If I could 3 hours sleep in a day (never in one chunk, mind you) for the next 3 months, I considered myself lucky. We could barely leave the house because of Boo’s vulnerability to infection. I lost lots of weight. I looked grey. I would cry if someone made eye contact with me.

I was severely depressed and had acute anxiety and panic attacks. I was advised to phone a local NHS mental health charity for counselling. The kind lady I spoke to said that the waiting list for treatment was about 6 months. She sounded more distressed on my behalf than I was, but thought my needs were too acute to be met by their service. I was too ill for them to be able to help me, I realised with a sadness so deep that I could barely speak. I managed to summon enough voice to say that I understood, got off the phone and cried for two hours straight. How could I help my kids when I was such a wreck?

My GP phoned our health visitor in disbelief that we had never been assigned one (we had but she was on long-term sick leave since Boo had come home from hospital). We were told there was a three month wait to see one regularly, but someone who was about to change jobs had one slot in the next month and could come and see me for a one-off visit.

She did and we filled out a CAF form, which is woefully out of date now and has never been used for anything. But the one good thing that did come out of the meeting was a referral to Home-start. I had never heard of them. They have done more to help us as a family than anyone has done in the past 19 months.

Since April, our wonderful volunteer has come round for 3 hours a week to give me respite and support. She has enabled me to catch up on medical paperwork; to do laundry; she has come with me to difficult appointments (including a very nerve-wracking EEG). She has given me friendship and head space. She has helped to give me back what I have retrieved of my sanity.

She has helped Boo, by playing with him at times when through the exhaustion and anxiety all I could do was cry when I looked at him. And yes, I am ashamed to type that sentence. More recently, she has looked after Boo so that I can spend a couple of hours one night a week with Sissyboo. Because, like her brother, like me, she too is vulnerable.

She adores Boo in a way I had never imagined would be possible. She is full of fun and laughs. But she wakes up at night sometimes crying because she is worried her little brother will never play football or because silly Mummy has said she has to take him to a routine appointment tomorrow and she is worried it will be one of those appointment when Mummy and her brother go into hospital and won’t be let out for a week or so. Having the luxury of just two hours a week alone with my daughter has made such a difference. I felt that I have got Sissyboo back. It is a little glimpse of normal that is all too rare in our lives.

Our time with Home-start will sadly have to come to an end soon, as my flexible working arrangement becomes slightly less flexible from January. And I feel both nervous and extremely sad about this. But I also feel incredibly grateful.

Home-start has helped all three of us immeasurably. They reached out to us at a time when no one else did. They advised me to apply for DLA for Boo. They put me in touch of a carers support service that vetted our application. They put me in touch with local SEN groups. They have helped ease my transition back to work. I could go on, but to quantify their help is frankly impossible.

Let me put it this way: I am not the same person I was in January. Neither is Boo, nor is his sister. And Home-start has played a large part in helping us on our way on this journey.

Vulnerability comes in all shapes and sizes. I never thought I would live in a vulnerable family. We are a dual income household with our own house, good friends and a supportive, if sadly very distant, group of relatives. But we are vulnerable. Others face different and sometimes much more acute challenges than we do. Home-start recognises that all families and children are unique and that many are sorely tested. They don’t discriminate against certain types of problem; nor do they privilege one above another.

That is why they have started their fabulous Snowflake Appeal for vulnerable children, each as different, beautiful and fragile as the next. If you read the magazine Good Housekeeping, you may have already read about this important appeal to help raise fund to support the invaluable work Home-start does in its interview with one of its supporters, Kirstie Allsop. If not, please visit Home-start’s website and see how you and your children might be able to help those affected by physical or mental health problems, financial hardship, bereavement or addiction.

Financially, times are hard, and never more so than in the run up to Christmas. But if you can afford to make a one-off donation to Home-start, or even a small monthly direct debit, then I would urge you to consider it. Or perhaps you just have £1 to spare for a snowflake pin badge.

If nothing else, please make just a few minutes to find out about the good work that Home-start does. Home-start is a relatively small charity but it has made an enormous impact on the lives of the one million children and families it has helped since it was set up forty years ago. Please help us to ensure that it can continue to do so. Thank you.