Guest post: "The children's hospice has given us a lifeline"

[MumsnetGuestPosts]

When Brandon was born, everything was fine until he was two months old. One day, he just held his breath, and his eyes rolled. A week later, it happened again, and then he just kept doing it, again and again and again. After a week staying in hospital having tests, we were told he had infantile spasms - a baby form of epilepsy.

Brandon was treated with daily steroid injections for a couple of months and from then on, he developed like every other baby; he learnt to walk and started saying a few words. His case was closed.

But then at 19 months old, Brandon started falling over. He was having what is known as drop attacks - and he was diagnosed with Lennox-Gastaut Syndrome, a type of severe epilepsy, just before his second birthday. It was a shock. It was heartbreaking.

Brandon lost the ability to speak, he needs a wheelchair and hoists, and has to wear a protective hat. The nature of his epilepsy is particularly difficult to treat; he has profound learning difficulties, and has become increasingly ill as he's got older.

On Mother's Day in 2012 he had his first tonic-clonic seizure, which affects the whole body. It lasted about thirty seconds, but it felt like forever. When he has these seizures, he goes rigid, his eyes flicker and his whole body shakes. We have to have a timer ready: if the seizure lasts for more than five minutes, he needs emergency attention.

Brandon can't communicate his needs, so anyone looking after him has to understand everything about him. They have to be able to spot the smallest of changes, because these have the potential to quickly become life-threatening. As a result, the only time we're apart from Brandon is when we go to the children’s hospice.

We were referred to Little Havens when he was five years old - and we were nervous and didn't know what to expect. But being there made us feel normal, we weren't out there alone in our big wide world of the unknown. It was a big sense of relief. It was only when we came to the end of our first stay that we realised what impact Little Havens was going to have on our lives. As we left we realised how relaxed we all felt and found we didn't want it to be over.

The hospice provides an opportunity for us to be a family and have a bit of time to switch off. We get to have a good night's sleep. If we want to go out for a meal, or take Brandon's two sisters out, we don't feel as guilty because Brandon has everything he needs and nurses who are with him all the time, even at night.

The families are all there for the same reason; it's our community, it's all normal for us. It's good to chat to other mums and dads. We talk about having a mountain of washing or not getting the vacuum around the house. And Brandon is somewhere safe. We'd be totally lost without Little Havens - Brandon wouldn't have the support he needs, we wouldn't have the break we need. Where else would we get that? Where else would we go?

Brandon can't talk so he can’t say what he thinks of Little Havens but as his Mum I just know he's happy there because he shows us he is. He would be in distress if it was wrong. Every time we go he feels safe enough to leave us, to go off with one of the carers or volunteers.

Brandon’s needs are so complex that without the hospice we wouldn't have any overnight respite. Our two girls wouldn't get mine and Steve's undivided attention, we wouldn’t get a break, we wouldn't have time to be a family or for Steve and I to have a cuddle without all of the worries of caring for Brandon. They pick us up when we're having bad times.They are our backup, our arms of comfort. We would be completely lost without them.

Brandon is not going to get any better. He'll only get bigger and potentially not as physically mobile. It's not a good outlook. As he's getting older his seizures are much harder to control, and if he doesn't come out of one - it could kill him.

The hospice is a lifeline. Spending time with families, especially the ones coming to the end of life, is exactly what it's about. It's about having time, it's about not having to worry. It's a feeling, about grabbing that moment, possibly the last chance you've got of being together. It's about appreciating the moments with your family because you don’t know when it's going to end.

Children’s Hospice Week is the UK's only awareness and fundraising week for families caring for seriously ill children and celebrating the organisations that support them. Lead by UK charity Together for Short Lives, the campaign brings together the UK's 53 children's hospices and all the children's palliative care charities providing vital care and support for children and families across the country.

[Doobydoo]

Thank you so much for sharing this. I used to work in a Children's Hospice and the relief families felt when they trusted us enough to go out for a few hours and look after their child will always stay with me.Thank you.

[AugustRose]

What a lovely post. We are very fortunate and have never needed to use a children's hospice but last year my DD2, then 8, raised money for our local children's hospice by cutting off her hair; her Brownie group held a cake sale and quiz night to help. She raised almost £300 and I was so proud that she wanted to help other children in this way.

Parents and sick children deserve all the help they can get and I'm pleased there are dedicated hospices to help when they need it. Sadly there aren't enough, our hospice only opened in their own premises recently after many years of fundraising, before that they had a few rooms as part of the adult hospice.

[loosechange]

Thank you for sharing this and bringing Children's Hospice week to my attention.

BW.

[Niklepic]

Thank you for this. DS goes to Derian House our local Children's Hospice. I was so scared before I went in, thinking it was a place children go to die but I can honestly say I've never been to a more joyful place. DS loves it and has made a lot of friends who are just like him, and the support we get as a family includes counselling and monthly support groups. DD2 with no SN asks to go just to have a play in the playroom!

[BillyNotQuiteNoMates]

I would encourage anyone who is lucky enough to have had no dealings with a children's hospice to go and visit one. Most have open days, to engage local people with fundraising. I've been several times and am now very involved with helping in any way I can. They are amazing places.

[Lolly86]

Thanks for that post. X

[TimTogether]

Hi ZZZZZ - all Children's Hospices rely on charitable support, and most give a range of ways of getting involved - many run charity shops, so you can donate stock, or shop in one of these, or get involved in one of the many charitable activities they run - from cake sales to fancy dress days to marathon running depending on your own interests!

The easiest way to get involved is to find your local hospice - you can search for your nearest service on our directory here: www.togetherforshortlives.org.uk/servicedirectory

Once you've found your nearest service the best place to start is their website - there will be loads of information about how you can support that particular hospice on the website, and you'll be able to find contact details to find out more as well!

Hope that's helpful!

Tim
Together for Short Lives

[KathyMurray]

We are also lucky to have been referred to Little Havens .. Could not agree with you more .. What a wonderful place it is

[Miloarmadillo1]

Hi Jenny. My DD, age 2, had IS diagnosed at 8m old. So far she is doing well but the spectre of LGS or other seizures is always hanging over us. I have 'met' (mostly only online) so many wonderful families with similar struggles to yours, and so have more reason than most to be thankful for local hospice support for our friends, though I hope we never need it for DD. We are performing with a Makaton choir at the local children's hospice summer fete to help them raise some funds. Thanks for sharing your story.

[AliceMumsnet]

@zzzzz

What about naming the most local hospice on each MNLocal site? You could provide links and "how to help" info?

Go on HQ, you know you want to.

This is a lovely idea, thanks zzzzz, we'll suggest this to our Local Editors and keep you updated.

[MNBirminghamLocalEd]

There are three Acorns Children's Hospices based in Birmingham, the Black Country and Worcester.

They do some really amazing work. If anyone would like to know how they can help support Acorns, I've posted a thread on the Mumsnet Birmingham and Sutton Coldfield site here:

local.mumsnet.com/Talk/local_birmingham_sutton_coldfield/2655555-Acorns-Childrens-Hospice?watched=1