Post by Michelle King...

My role at Little Miracles means I have the privilege of seeing children grow, of really getting to know the family and spending time with them.  This means that I get incredibly close to the families, I am involved with their lives and often I am involved in their deaths and making sure the family knows exactly what is happening so that the child gets the best death possible.

This in itself I truly believe makes a difference to the family and hopefully makes things that little bit easier in what will be the worst experience of their lives.

My role can be anything for the family whether it’s just holding their hand, ensuring that they have a priest attend the bedside, explain what is happening, keeping family members from arguing and generally keeping the peace but sometimes it’s also helping the family leave their child at the hospital for the last time.  After the child passes I also help the family plan the funeral and help with essential arrangements whether that be planning the funeral, making phone calls or visiting the child with the family, and ensuring that they look perfect before the family go in.  Honestly, this is for the family but helping and taking on practical arrangements also helps me feel useful, grieve myself, and appreciate my own situation.

Recently we lost a little boy very dear to me.  A child whose smile lit up a room, who sparked joy in everyone he met.  I cannot begin to explain how amazing this child was how he fought to live every day of his 10 short years and how full of love his life was.  It was an honor to know him and spend his final day with him.

Last week was his funeral and I feel like I have failed the family as I was unable to do the things that I would normally do for them.  As this pandemic takes hold it made me think about how many of us will lose loved ones whether as a result of the virus or other means but not be able to make the arrangements that we normally would.  As a result, I have made a bit of a list of things that may or may not help – but I think the important thing to remember is this is completely unchartered territory and do what works for you and your family and reach out for help.

1. Often we can anticipate in advance that we are going to lose a loved one.  In this situation, if possible it’s important to talk about it.  I always think of a good death as being one that is planned out and as peaceful as possible surrounded by friends and family but at the moment this is not always going to be possible.  If possible talk about where you want the death to happen but please try not to set something in stone now more than ever plans have to change.  If you cannot be with your loved one then can you video call or get a mobile phone into them?  It is not ideal but playing a favorite song over the phone may bring comfort to both of you even if they are in a position of not being able to respond.
2. At this distressing time you may not be able to visit your loved one at the funeral home – if this is the case then ask if you can prepare what they wear and send it in and consider writing a letter to be placed inside the coffin to enable you to say those final goodbyes that you may have missed.
3. Get dressed.  You may not feel like it and in the time of lockdown no one will know or judge you for sitting in your pajamas but getting dressed, doing your makeup, etc is part of the grieving process that many of us may miss due to not being able to attend the funeral.  Every morning at the moment I have a staff meeting first thing and make everyone get up and be showered and dressed – this isn’t because I care if they want to work in the jim-jams it’s because it is essential for their mental health and putting them in the right frame of mind to work.  There is a lot to be said about the act of choosing what you are going to wear and making sure that you dig out the waterproof mascara and it’s all part of the grieving process.
4. The physical service will be different from what you are expecting and you may not be able to attend.  At the moment these services are being live-streamed in some but not all areas.  If you are watching it live then watch remotely with other people that are also grieving.  If you cannot attend then light a candle or let off a balloon and take the time to focus on your loved one and share the time that you would have spent at the funeral.
5. If you would have normally have had a collection for charity then still have this – set up a page on just giving or alike and give a donation in their name but other more practical ideas could include fighting for a home delivery slot to send food to your family.
6. If you would have sent flowers then send flowers – and ask the funeral home to take photos for you of them.  If you are attending perhaps consider if you would like those flowers to remain where they may not be seen again or if you would prefer to take them home.
7. If possible get outside, being outside does amazing things for our wellbeing but after the service also connect with loved ones on systems such as Zoom.  Even if you do not feel like you want or can talk, just being with other people experiencing the same grief will help.  If you feel able to share happy stories, toast their life, and plan the memorial service to celebrate their life that you will have once this craziness is over.  Sharing memories and planning for the future is so important to the grieving process – do not wait to start.  Another idea would be to share pictures and memories via a group chat or similar – there are some amazing free video creator sites available which will allow you to compile these into a video to share.
8. That memorial that you planned after the service for when the craziness is over – hold it!  Celebrate their life and hold a party that they would have loved to have attended.
9. Remember that grief does not end with the funeral – continue to be there for each other and speak about the person you have lost and if you are finding things difficult reach out for support many organisations, ourselves included have moved their counselling services online – at this difficult time you do not need to be alone.

I cannot stress the importance of reaching out to people in this time whether this be your family or a professional – we have a team of counsellors and family support workers that you can reach by calling 01733 262226 or by completing this form for us to call you back  

Lastly, I am sorry that you are having to go through this.

LOOK AFTER YOUR WELLBEING DURING COVID 19

The Coronavirus (COVID-19) outbreak has drastically changed how we live our lives - there's travel restrictions, many workplaces have closed, and now schools have closed too. Maintaining your mental welbeing can be difficult in the face of such disruption and uncertainty, but there are reasons to be optimistic too.

Jill Wagner, Little Miracles’ Clinical Lead, has some tips for how to stay well at this difficult time.

Stay present

All we can do is take one day at a time. The present moment is a gift - we should live each moment to the best of our ability. Take a moment to notice your feelings of concern, stress and anxiety, be aware of them, acknowledge them, and let them pass.

Activities that engage our mind and make us think a little bit, such as arts and crafts, jigsaw puzzles and colouring are perfect for reducing anxiety levels. When we are anxious our rational mind closes down; engaging with such activities reinstates the rational mind, and reduces anxiety by interrupting our default way of thinking.

Breathing exercises help to reduce the symptoms of anxiety too, a few nice deep breaths get plenty of oxygen into the system. Make sure the breath goes right to the abdomen, take a moment to notice when the breath is at its deepest.

Stay connected

The current advice is to limit face-to-face interactions with other people. Naturally, this means we need to be creative in how we stay connected with each other. Feeling connected to others is so significant to good mental health, and in times like this, it’s easy to become isolated.

Technology is our greatest asset here. Texting is great for conveying information, but where possible, make phone calls, or even better, video calls. Video calls are the closest thing to face-to-face interaction we have - being able to process tone of voice, body language and facial expressions adds a great deal of value to the conversation, mentally.

Many services now use technology to support people remotely. If you’re already in the therapeutic process, I would suggest looking into how you can maintain your treatment by using technology.

Go back to basics

Use this time to get back to basics - play with your children, preferably activities that use the rational mind and encourage conversation.

Your physical and mental health are linked, and you don’t need to go to the gym to enjoy the benefits of exercising. Make time to get out of the house - go outside and enjoy the fresh air, smell the flowers; notice your surroundings. Even a simple walk raises serotonin levels in the brain and lets you take in Vitamin D, boosting your immune system.

Plan

Your brain likes to work logically, you feel confident when you have power or control over a situation. Structuring your thoughts into plans is a good way to remove yourself from the negativity and focus on what you can do. The current restrictions could actually be beneficial - all the more reason to reconnect with old friends, and the extra time at home could give you the time to learn skills, cook healthier meals or read more, for example.

Your brain likes to process information that reinforces what it already knows. While this can be a good thing, in that it’s how we improve our skills and build good habits, it can also cause us to become close-minded or seek out information that causes negative emotions. If you are anxious about the Coronavirus threat, you may want to limit your exposure to the news (outside of Government updates) even if something inside is telling you to look. It’s easy to become obsessive under the guise of wanting to be informed.

This crisis will pass; dealing with it in the here and now, calmly and rationally, will teach our children that we can come through difficult times in a positive way - what better way to teach resilience?

Care for yourself and your surroundings

Your mood is influenced by how you look after yourself and your living environment. Keep on top of doing the things you do to make yourself confident - wash regularly, put your jewellery on, wear perfume. Even if it doesn't seem necessary on the face of it, keeping this routine going will help ground you in the present.

Now that you’re spending more time at home, you may want to do some of those small jobs you’ve been putting off. Clearing your mind of lots of small to-do’s will lift your spirits and keep you motivated; tick them off when they’re done so you can see the progress. It’s good to get your children involved too.

Following our normal morning routines puts us in the correct mindset - if you’re working from home, you feel more productive when you’ve got proper clothes on. If you’re working from home using a computer, try to work in a room other than your bedroom. Mentally, we need to be able to separate our home life from our work life, and having a distinct work area helps us to switch off when we need to.

One last thing - you need to be mindful of how much of the news you are exposing to your children. It’s up to you to decide where the line is; bearing in mind that older children will be able to find truths and mistruths for themselves.

All children need to know the basic facts, as explained in this social story (produced by Roddensvale School):

Max cards … what are they and what do they do?

Max cards are the UK’s top discount card for families of children with additional needs, disabilities and/or life-limiting conditions or illnesses. One card covers a family of four.

There are hudreds of places across the UK where you can use these cards and discounts vary from place to place. They can be used at all Merlin attractions where you can get significant discounts and some places are free!

Some places offer discounts for the whole family, others just for the disabled child.

For a list of all attractions, information and discounts available, please visit www.mymaxcard.co.uk.

Even better news….

Little Miracles are an authorised stockist of Max Cards and can be purchased from us for £5. You can either collect from our Peterborough Branch or we can post for an additional £1.55.

Little Miracles require proof of additional need/disability via DLA or Diagnosis letter. These can be sent to admin@littlemiraclescharity.org.uk.

To request a card from us, please fill out this form.

Once the form has been received, an invoice will be sent out to you. Your card will only be sent once proof and payment has been received.

Have you been anywhere and used your max card? Did you get great discount? Please let us know if there is anywhere you recommend so we can share with our families.

Linx Printing Technologies Ltd (based in Saint Ives) have organised and completed a large fundraising event for their Charity of the Year partner, Little Miracles (based in Peterborough). Little Miracles provides support to families that have children (aged 0-25) with additional needs, disabilities and life limiting conditions.

Linx staff spent six months preparing the fundraising event – a personal challenge for six cyclists (all Linx employees) who cycled 372 miles over four days (with over a 17,600ft climb) starting on the morning of 24th May and finishing on the evening of 27th May. The cycling event is the latest of a series of fundraising events organised by Linx for Little Miracles; this cycling event and a car wash has raised £1950 excluding GiftAid (which when claimed could raise as much as £2437).

Additional information and the route that was taken can be found at https://www.justgiving.com/fundraising/cyclemay2019.
(the figures included above are the actual amounts, not the ones on the justgiving page)

Sean Robson, Business Development Officer at Little Miracles said “The money raised is enough to provide a whole year of weekly two-hour sensory sessions at Little Miracles Peterborough’s playcentre, The Spinney in Westwood. I’d like to thank the cyclists for their fantastic efforts, the event organisers for working out the logistics, all individuals and companies who supported the event, and of course everyone who donated. It is not too late to get involved – simply visit justgiving.com/fundraising/cyclemay2019.”

Linx staff provided their own food, bikes and accommodation to increase the amount raised for Little Miracles. Linx the company sponsored the fuel for support vehicles as well as time for staff to prepare for the event. Perry’s provided a minibus for cyclists to drive to the starting point in Scotland and a van for volunteers to travel in; all free of charge. Print Solutions provided vinyl signs to go on the support vehicles.

There are too many supporting companies to list but guesthouses that put the cyclists and supporting volunteers up for reduced fees and let them use their garages.

Below quotes were posted on Linx’s Facebook page for the event.
• “We made it. 28hrs20mins, 372 miles later and over 17,600ft climb over the last 4 days”
• “Everyone is glad to have finished and it’s been a real challenge”
• “Time to hit the showers and rest those weary legs!”
• “An awesome effort in pretty gruelling conditions”
• “the next 16miles was challenging but the views rewarding with fleeting showers”
• “shoes full of water and soaked to the bone”
• “The first glass of Pepsi didn’t taste sweet”
• “I didn’t do the views justice in the advertising for this event: stunning!”
• “tomorrow could be a washout!”
• “11 miles and 50 mins in, X crashed into a parked car! Don’t worry the car is fine!”

Little Miracles and friends want to wish the key people for this event a massive thank you for taking on this challenge and helping us raise vital funds that keep the charity running!

Paul Gregory – Senior Electronics Engineer at Linx (main organiser and cyclist)
Lisa Hunter – Marketing Communications Manager at Linx (arranged with Little Miracles to have representatives come in and talk to Linx’s staff, main point of contact for Little Miracles
Jorn Frank (he came over from Linx’s German office just to take part in the challenge), Jamie Shelley, Tom Manwaring, Neal Gregory, Slawomir Kozubal – Cyclists
Stuart Hardy, Dan Barnes and Malgorzata Gorecka-Kozubal – drove the support vehicles and provided most of the catering and bike mechanics

AND YOU CAN MAKE A DIFFERENCE!

Did you know last year Peterborough branch had 2,021 people attend our playscheme???

In order to make this happen again this year we need to raise £11,387!!! This seems like a massive amount but if everyone on our facebook page donated £2 we can make this happen straight away, please consider making a donation as every penny counts! Would you notice a £2 donation? Could you donate more or hold a fundraiser for us?

As a result of attending 86.4% reporting feeling less isolated, 70.4% felt they had made progress to towards a developmental milestone and 87.7% reported an improvement in their wellbeing. All of this via having opportunities to play! Please make a small donation in order to make this happen again and lets aim for a bigger and better year!

Thermometer By ABC Fundraising®

DONATE NOW

Have you got a bucket list? If so I wonder if jumping out of a plane is on their? Many of us have it as a pie in the sky type item that we think we will do it one day and then put it to the back of our minds. However skydiving is easier than you think to achieve, will conquer your fears and make you feel amazing! Add in the adrenalin of jumping at 13,000 feet and the perfect calmness and how beautiful the world is as you float back down why would you not want to?

If nothing else think of the selfies!

You have the opportunity to experience this whilst also enabling local disabled children to have a summer they will never forget.

On the 29th July we are working Sibson airfield UK who are affiliated to the British Parachute Association. All instructors are highly trained and very experienced to ensure you experience a safe, enjoyable time. On the day you will undergo a training session designed to keep you safe before boarding an aircraft that reaches around 13,000 feet in a parachute designed for two people. You will fall at around 120 mph descending to 5,000 feet before your instructor opens the parachute. It’ll then take around 6 minutes to reach the ground.

Even more exciting is if you raise £300 then we will pay for the jump for you! So what are you waiting for complete the details in this link for more details and to have a once in a life time experience.