Back to school

This week was back to school time for William. I always find the start and end of the school years quite emotional...thankfulness that we've made it to another year, worrying what new problems this year will bring, wondering if he'll make it to the end of this year. It can feel like we're on some kind of countdown, counting down William's life in school years. It's not easy.

This September has felt particularly difficult. I am reflecting on last year which brought us a big surprise and wondering what's around the corner for William. It seems this summer has been a great one for many of his school friends in many different ways with lots of celebrations of different achievements. And yet for William there's never anything to celebrate, he never makes a step forward in his health, he never develops a new skill. This summer has seen a step back with seizure control and more difficult conversations have been had. I've just been wishing for something good to come William's way for a change.

And then I got to thinking and chatting with my lovely friend and William's carer, Michele, and I started to see it all a bit different.

I've felt for a while that in a way William shouldn't be here. If you look at the cold hard facts of his medical needs you can wonder how is he still here. Tonight I've been reflecting;

• In July 2010 my unborn baby boy was diagnosed with a devastating brain malformation. The radiographer told us he might not survive until birth, the neonatologist told us he would never got to school and Wikipedia told us he'd unlikely live past 2.
• In May 2011 William stopped breathing in the car either as the result of a seizure or chest infection. Steve perform CPR on the hard shoulder and a passing police car picked us up and blue lighted us to A&E.
• In June 2011 we put a DNR order on him, he was having frequent seizures where he would simply stop breathing. Our consultant told us he had a very severe case of epilepsy in infancy and we were not in a good situation. It was a very real possibility that he might not make his first birthday.
• In September 2012 our consultant returned from a years leave and told us she hadn't expected William to have survived the year she was away.
• In  April 2015 we met with the respiratory team at our local major hospital. William was struggling with his respiratory health in several ways. The lead PICU consultant told us he was surprised William hadn't had an intensive care stay as a result of a chest infection given how he was presenting.
• In May 2015 he developed a chest infection and we thought our first PICU stay was upon us. But the situation turned around over night.
• In October 2016 William went into DKA with un-diagnosed diabetes. We were told he'd been maybe 48 hours from death had we not acted when we did.

So you see, my boy might not be improving but he's living, and he's more well than he should be. So we might not be celebrating a new skill or seizure control but every day we will celebrate that he is with us. And we will thank our faithful God that we've already been blessed with more days and more good health than anyone thought we might get. And we will pray for so so many more good days. 

Extension

Three years ago our lovely friends Michelle and Sam walked from their house near Kettering to ours in St. Ives to raise money for William. They did an amazing job walking all day and raised lots of money that we put towards a specialist buggy for William. We have used this buggy soooo much and it enables us to do things with William which we wouldn't be able to access with his wheelchair.

On Saturday, Michelle and Sam have decided to do it all over again to raise some more money for William! We are so grateful they have decided to take this on again knowing how hard it was last time!

Thank you so much to everyone that has sponsored them already! We would like to share a bit more about what the money will go towards.

A few years ago we had our home adapted so that William could continue to live in it. We had a through floor lift installed to get William upstairs, four ceiling track hoists and a wet room with shower bench. Now William has got so big we rely on this equipment. We can no longer carry him upstairs or lift him. The adaptations and equipment we have are so important and vital to our everyday lives.

As William has grown, changed and become more medically complex and we have come to completely rely on the adaptations, we have started to find some aspects of it aren't meeting his needs anymore so are applying to have some more changes done. The plans have got through the first stage of approval but we've still got a way to go. Initial estimations are that we are looking at needing around £50,000 for the work. If the plans get the go ahead, £30,000 should be provided by the council which leaves us needing to find around £20,000. If the plans don't get approved we would need to fund the whole thing our self, which seems impossible!

We want to move William's bedroom and wet room downstairs and get rid of the lift, which will require an extension on the side of our house. There are a number of reasons why we want to do this and I won't bore you with the details, but one of the biggest reasons is William's declining respiratory health. William needs regular suctioning when he coughs to stop him choking on his secretions. If he coughs while in the lift we cant get to him to suction. Also when William is unwell he often struggles to sit up and we find his oxygen saturations drop. However to get him upstairs we have to sit him up to go in the lift which is far from ideal. At times we can only get him to bed by compromising his breathing.

We have many other reasons linked to the amount of care we now have in the home, not having enough space for his ever growing medical supplies, increasing size of his equipment (wheelchairs and standing frame), reducing hoist transfers and quality of life.

We want to do everything we can to make sure William will be able to live at home for his whole life, however long that will be and however complex he might become.

Holidays with 'a William'

One thing we try and do every year as a family is go on holiday! Planning a holiday when you have a medically complex disabled child is something of an ordeal...

The Planning
First we need to work out where to go! We tend to holiday with grandparents and my sister and brother-in-law so we have 10 people in total. We love spending time with them all but it also gives us gives us some help with cooking and caring for Eliza and provides us with a back up if William were to become unwell away from home. William needs his own bedroom due to his nocturnal activities so we have to find somewhere with six bedrooms. It needs to have parking nearby, no steps to the front door, a downstairs bedroom and ideally wetroom, no narrow corridors or doorways, room to manoeuvre a mobile hoist, ideally within 30 minutes of a decent hospital with A&E, not so remote that we don't have phone signal in an emergency, with activities for all ages located nearby and ideally within two hours of home. It's nice if we don't need to load up into the car every time we want to go out and to be able to do things close to the house so we can nip back for nappy changes. And of course it needs to meet my decor standards (no patterned carpets and only white linen allowed) and be nicer than my house so it feels like a proper treat to be away.

The Preparation
As the holiday approaches there's a lot we need to get ready. In order to reduce the amount of work we need to do when we're away we pre-blend most of William's meals for the week (plus a few extras for when we get home). In the run up to this holiday we blended 7 batches of food (28 meals), all labelled, carb counted and bagged up. We have to call William's oxygen delivery company and arrange with them and the rental agency for a delivery of oxygen to be make to the house on the day of our arrival and then collected again when we leave. We have to make sure we have enough medicines and equipment in stock and plan prescription ordering around when we'll be away.

The Van!

The Packing
For the first time this year we have hired a van to take on holiday. That's right, my six year old son is such a primma donna that he demanded a whole van to take his luggage on holiday!
William has got so big and more difficult to manage physically so to make it as easy on him and us as possible we decided we wanted to take the Acheeva bed. As we're only 90 minutes from home it was easy to take two vehicles. The van has enabled us to not only bring his acheeva but also his indoor chair, his buggy, his offroad base, his full sleep system, a mobile hoist, his bath chair as well as all his medical supplies and clothes.

Packing up!

We take a lot of stuff with us "just in case" and it quickly adds up to a lot of stuff! We have a big packing list that we work to every time we go away anywhere which helps but I always end up short of time and majorly stressed by the time we actually manage to set off!












The Destination

Chest physio on the acheeva

Family dinner time!

I love that hour after you arrive at your holiday home and explore your new surroundings. Where we are staying this week is a particularly massive amazing house so exploring it took a while! Then began the task of working out who would go where. William always gets first dibs! He had the choice of two downstairs rooms this time. We quickly discovered a problem in that the room earmarked for him had a staggered doorway so we wouldn't get his acheeva in the room. The second bedroom was better but the bed sat too low to the ground and we couldn't get the hoist under it. Back to the first bedroom but the hoist didn't even go through the doorway so the second bedroom it was! After a trip to the local timber yard for some blocks to raise the bed we were good to go! When I pick a holiday home I scour photos and floor plans working out what will and won't work. There are some details though that you can't foresee and although insignificant to most they can be massive hurdles to caring for William.
The house we are staying in this week is super spacious, it's such a treat! We have plenty of room for us all, William's bed and a parking area for all of William's chairs! I can get in such a stress at home about lack of space due to the amount of kit William needs to move around the house, that it's really nice to not have any of that to contend with this week!

Kitchen space for medicines and blending kit!

Wheelchair car park!

The Itinerary
Getting William from bed to out the door takes about 3 hours in a morning so we plan what we're doing every day so we know which days we need to start early with him and which we can be more relaxed with. We then need to take into account what will Eliza like doing? What will four grandparents like doing? Where can we change William? What will the weather be doing? What wheelchair is most suitable for where we're going? How long is William likely to be in his chair? Is he likely to run into difficulties with his airways and require extra equipment?
Visiting new places can be a bit stressful because we don't know what to expect. Today for example we visited the Holkham Estate. The visit was made much more enjoyable because their baby change was a bench rather than a small table so we could lift him onto it (just!), the cafe was spacious so his chair wasn't in the way, there were benches in the cafe so we could lie him out over lunch, the footpaths were good and disabled parking was available nearby. It can just as easily go the other way though too!

Why do we bother?
With all the planning, packing, stress and effort that goes into holidays for us we do often wonder if it's worth it. There are two main reasons why we keep going; firstly because despite all the difficult bits we actually have a lovely time. There are moments in there that are so wonderful. We've had a really full on couple of weeks with a lot of big meetings and appointments. We have more to come when we get back. But being here in the Norfolk countryside surrounded by big skies and fields is my time to breathe out and switch off. It's time to just be us.
Secondly, we do it to create memories. I am massively into memory making, especially for us as a family around a life limited child. I take hundreds of photos on holiday and turn them into photo books so one day they'll form part of our physical memories of William. We only have a small window of time to enjoy life on earth with William before we'll be separated for a while, so for now we do everything we can to enjoy life with him, even if it takes a lot of effort. One day we will look back and remember all the wonderful special things we did with him and the stress will be forgotten.

What sort of mum?

I'm the sort of mum who has always wanted to have children.

The sort of mum who doesn't like being pregnant, hates the nausea and the pelvic pain, does not like labour at all and actually feels quite terrified when given a new baby to look after. 

I'm the sort of mum who doesn't get that rush of love when I first see my baby, because quite frankly it could be anyone's baby and I wouldn't know the difference. 

But I'm also the sort of mum who's love for her children grows as I get to know them and all their little ways. 

I'm the sort of mum who started off with no confidence in herself but then was given a very special little baby who needed a mum who could speak up for him and become his voice and advocate.

Now I'm the sort of mum who has become the sort of mum I never imagined I could or would be. 

The sort of mum who chooses to blend three meals a day in the hope her son's digestive system will not pack in. Who attends manual handling clinics to makes sure the headrest is just perfectly positioned. Who finds it really hard work to keep interacting with my son who won't interact back.Who reviews an EHCP draft with a fine tooth comb to make sure there are no loopholes. Who gets asked at every hospital admission what my resuscitation wishes are for my son. Who knows how to do the job of a pancreas. Who knows that that little noise means a great big phlegmy cough is coming. Who thinks through everything on my son's behalf and tries to imagine what his experience of life is like. Who finds her son's smile worth a hundred tough days. Who watches violent seizures with a complete mix of normality and heartbreak. Who is trying to find someone to update her CPR training. Who tries to explain to her three year old about death. Who thrives in an MDT meeting but finds a normal conversation a bit daunting. Who fights (in the friendliest kindest way) to get her son what he needs. Who has to hoist her son onto her knee if she wants to give him a cuddle.The sort of mum who doesn't want to live with regret that my son didn't always get my best. 

I'm the sort of mum who will never be able to turn off the worrying but who would sometimes like to be able to turn off from the routine of the nebs and the physio and the hoisting and the feeding and the blood glucose testing and the nappy changing. The sort of mum who would just like to have a little break now and then to do something a bit nice (that doesn't involve military operation style planning).

But to be the sort of mum who gets a little break now and then I've got to be able to put myself first and ignore what I know is right and best and safe for my son. I have to be able to let strangers (all be it highly trained strangers) take over my job as my son's advocate, voice, interpreter, pancreas and mum. But I just can't do that.

So I wish instead someone could understand the sort of mum I am and see my need for a little break but see my bigger need to do my absolute best for my son. I wish someone would see that it's taken a long time to build a little team of people who I can trust and who know how to do my job just like it needs to be done. I wish they'd see that if he's not with me he should be with one of them because that's what's best and safest for him. I wish they didn't just have to see costs and red tape and policies and insurance problems. 

Every child is different, every mum is different and every family and their needs is different. I wish sometimes we could stop and listen and work out what are this family's needs and how do we best meet them instead of squeezing everyone into a one size fits all option. Choices for care have improved massively but I think there's still so far to go in making the family feel listened to, understood and respected.

A whole new world!

A whole six months and 6 days ago have passed since William's diabetes diagnosis. I wrote the blog below just after it had all happened.

What a weekend we have had!

On Thursday morning William decided not to wake up, in fact he slept nearly all day. He had a mild fever in the morning so we kept him home thinking he was brewing a little respiratory infection. We decided to monitor his sats and give him a little oxygen as he was so out of it. By Friday he wasn't much different. A little more mild fever but easily fixed. But still he slept and looked a bit worryingly pale. Of most concern was that his heart rate was 120-130 when zonked out asleep rather than his usual 70-80. 

What followed was a serious of perfectly arranged events. I had to pop to the hospital to pick up supplies for William. I had put off calling the hospital as I was worried they would want to see him and I didn't think he was that poorly. Instead I decided to ask to speak to his consultant for some advice when I got there to pick up my supplies. I so nearly didn't ask as I didn't want to take her time but outpatients was totally empty and I just went for it. Thankfully she was there and came straight out to see me. After explaining Williams' symptoms she told me he needed seeing, as an elevated heart rate with no obvious cause was cause for concern.

Thankfully Steve had cancelled his trip to London to work from home as we were unsure which way William was going to go. So I drove back home, collected Steve and William and back we came. Thankfully the consultant on call was the diabetes specialist! He did all the usual checks and we suspected he would diagnose the start of a viral infection. He decided to check William's blood sugars, which is not a standard check ever done on William, anticipating they might be low but the reading came back as 'HI' indicating a result too high for the monitor to read. He did two more tests to check there hadn't been an error and they both came back HI too. This indicated a more serious problem was going on. They quickly checked William's ketones and found that they too were also much higher than they should be. We were told William had diabetic ketoacidosis (DKA) and most likely had type 1 diabetes. Sepsis was also an additional possibility given his symptoms. My first thought was, "What have I done to give him diabetes! Is this because I have fed him a blended diet?" My concerns were quickly laid to rest by the nurse but I was still so confused how this had happened and what would it mean for William.

We were moved quickly to HDU and treatment was started for the DKA. We were told, had we not sought advice, William was maybe only 48 hours from death. He was checked regularly for signs of cerebral oedema, a rare but very serious complication, and we were very very worried.

Over the course of the night his numbers (blood sugars, ketones and blood acidity) came down and he was no longer classed as having DKA. The situation was no longer life threatening but now we had the big task ahead of learning about type 1 diabetes and getting William's diabetes under some control.

Type 1 diabetes is an autoimmune disorder, where the pancreas no longer produces insulin. The blood can therefore no longer absorb glucose from food without the help of insulin and this causes a series of problems. In order to treat this, insulin is given to the patient but it must be give in just the right amounts to regulate blood sugars. Too much insulin will give you hypoglycemia which is lethal if left untreated and too little insulin would give you hyperglycemia which could lead to DKA developing again. The amount needed will depend on the patient, how many carbs (glucose) they eat, their activity levels, how well they are, their hormones, the weather, what type of meals they have, how quickly they digest their food and numerous other factors!

Type 1 diabetes is nothing to do with being overweight, how healthy your diet is or any other factors you can control. Your pancreas simply stops producing insulin for not totally understood reasons. William developing type 1 diabetes on top of his many other diagnoses is just really bad luck. There are no links to his existing conditions. At some point his immune system attacked the insulin producing beta cells in his pancreas but the reasons for that are not really known. He joins over 29,000 other children in the UK diagnosed with Type 1 diabetes.

So now we have begun the process of learning about this new diagnosis and working out how much insulin William needs each day. So far his levels have been very variable and nowhere near what they should be. Each day his insulin doses get put up but we still have a way to go. We will need to be inpatient until they can find the correct dose for William and until we become more confident in managing it.

For William the fact that he is tube fed and has no control or choice over what he eats will make it easier on us to calculate his insulin requirement but the fact that he has no awareness or symptoms when his blood sugars are too high or low is going to be very tricky. 

So, back to now and we are 188 days into this new stage of William's story and mostly things are actually ok! Thankfully our diabetes team were quickly able to secure funding for William to have an insulin pump and continuous glucose monitor which helps us a lot in controlling the diabetes. However they are just tools and have taken a lot of working out! Between Steve and I and the pump and sensor we are performing the job of one of William's organs. Every day is different and despite being able to tightly control his carb intake, we see massive variations day to day in his control. We are so thankful for an incredible diabetes support team who have got us back on track, despite a case like William being quite unusual for them too! Our diabetes specialist nurse is so lovely and encouraging and always available to offer support. The team at the hospital also run a 24hr helpline in case of unexpected problems which is so useful.

Once every three months William goes to diabetes clinic and has a blood test called HbA1c which is used as an indicator to show how well your diabetes control has been over the last 3 months. The aim for diabetics is to get 6.5%. On diagnosis Williams was around 9.5% I think. A reading of 12-13% is considered very high. William's first two results since starting treatment have been 6.6% and 6.7% which is pretty incredible given his target range is higher than most peoples.

Diabetes continues to challenge us and complicate many areas of William's care but it feels safe to say we're conquering this mountain. I just hope there are no more new challenges for a while!

Rare Disease Day

Today is Rare Disease Day (http://www.rarediseaseday.org/article/what-is-rare-disease-day)! So I thought I'd take the opportunity to do a little update on my own little 'rarity'.

Since William was diagnosed with Type 1 diabetes in October it's been all go! The new diagnosis has created a lot of new problems and we've had to have lots of meetings to put plans into place for school, update William's EHCP and sort respite. It's all still very much ongoing and my weeks seem to be filled with meetings, appointment and emails.

December saw our first major illness since the diabetes diagnosis which brought up issues surrounding William's symptom management when he is unwell. The diabetes diagnosis complicates things when William is unwell and being unwell complicates the diabetes! We are hoping to meet soon with our two consultants and diabetes specialist nurse to put plans into place regarding William's diabetes management when he is more unwell. Because of the specialist equipment William uses to manage his diabetes, none of the nurses on the ward are able to support us in managing him during inpatient stays which puts a lot of pressure on Steve and I. We are also being put in touch with our local palliative and supportive care consultant in order to plan around William's diabetes management when he is very unwell. It is very unusual to have a child like William with type 1 so everyone is on slightly uncharted territory and we want to be as prepared as we can.

Earlier this month William was seen in the annual complex physical disability clinic, where for the first time it was suspected William might have developed a slight scoliosis. Children like William are very prone to developing scoliosis because their muscles don't work correctly and they don't stand and walk. We do everything we can to prevent William from developing scoliosis (24hr postural management, standing frame, supportive seating, sleep system) but in many cases it is just inevitable. Spinal surgery is a massive operation to endure and recover from and we were advised a couple of years ago that William wouldn't stand a good chance of surviving the surgery and we would likely need to consider scoliosis a terminal diagnosis for him. The discovery, therefore, that he might be developing scoliosis was a great worry.

He's getting a bit carried away with these diagnoses!

We took William for an x-ray the next day and thankfully the radiographer felt the x-ray didn't show signs of scoliosis yet but they did coincidentally discover another little quirk about William! They spotted on the spine x-ray that his 5th vertebrae has not fully closed up leading to a diagnosis of Spina Bifida Occulta. This is a condition he will have had his whole life and is unlikely to cause William much trouble given his other more complex diagnoses. He is at higher risk of developing UTIs (but he's never had one so far) and we have to take him for a kidney ultrasound to check for scaring on the kidneys caused by kidney reflux. This should be fairly simple to treat so all in all it's not something we are concerned about, it just makes William even more unique!

Finally, the day after the spine x-ray results we received a letter from our Genetics consultant. We first met with genetics in February 2011 where William's history was taken. Over the last 6 years numerous genes have been tested to try and locate the error or 'spelling mistake' in William's genes which has led to him having such a unique brain! All initial tests were clear so for several years we have been on a research trial called SPEED trying to locate the gene culprit! Finally two weeks ago we received a letter to say the trial has found a mistake on a gene called TUBA1A. Although this doesn't mean anything for William its good to finally get some answers! Steve and I have now been for blood tests so they can now look at our TUBA1A gene to see if we carry the same spelling mistake. We are seeing the geneticist in May to discuss the results. It is most likely that this error has occurred for the first time in William but there is a small chance Steve and/or I are carriers which in turn would potentially affect any future pregnancies. For now we just need to wait for May.

All in all it's been a bonkers few months!

Respite

In the past we have received respite from a number of different places, however our current system of support is something called Direct Payments. This is where William's needs are assessed and an annual pot of money is allocated to him according to his needs to buy in PAs/carers. I am the employer and am able to hire my own employees and I set the rota. This has worked incredibly well for us as we have three brilliant girls that come in one evening each per week and for longer days in the school holidays to help care for William. They all know William through school and that cross over of care has been vital to the success of it all. As I am the employer we are able to be much more informal about how things are set up and this suits us all. We could not get by without the help of our direct payment PAs, but what they provide isn't really respite. They are here because come 4pm we are a three parent family if we want to get to bedtime at a reasonable hour without a ton of stress. It takes three hours (if you're quick) to get William to bed every night. Managing his full on bedtime routine, cooking dinner for us all and getting a three year old to bed can be a bit crazy when it's just Steve and I. 

When we talk about respite what we really mean is a break away from your caring duties and a chance to switch off a bit from your day to day life. Respite for us, getting a true break, means William being cared for out of the home overnight. Having someone in your home to help you get through the evening without going crazy is fantastic, but it's not a break. 

Two years ago we switched the way we fed William, with the support of his medical team. Unfortunately as this is still a relatively unorthodox way to feed a tube fed child William has been unable to receive respite at our local hospice while they work on a policy to allow them to feed him. This has left us without proper respite for about 18 months. We had just about reached a stage where we thought he could start having breaks at the hospice again when diabetes hit and that threw a real spanner in the works!

While type 1 diabetes isn't an overly rare condition, it is very rare in children like William. His diabetes has to be managed with the most specialist equipment currently available to type 1 diabetics and in order to be able to use this equipment properly you need to use it often because there's a lot to remember. This set us right back to square one with the hospice because their rota pattern isn't compatible with caring for William on a frequent enough basis. 

As a result we went to panel last month requesting approval for respite through a service called Link. This is run by the local council as part of the fostering team and would see William cared for in another family's home one weekend a month. This seemed the ideal option for us as it suited our preference for more informal care and would ensure continuity. After a lot of work from the team around William and myself we were approved, despite William being two years younger than the usual starting age for Link. Of course though, as with anything involving William, it has not been straight forward and the only family registered with Link who are able to take in someone of William's complexity have had to be ruled out because of a number of practicalities. 

So we are now back off to panel in search of another solution. We have another idea we are putting to them but who know if it'll be agreed as it's quite unusual. But William is unusual. 

There is a strong chance we just won't end up with any overnight, proper respite. How can it be that a family like ours, caring for one of the most medically complex children in the county, cannot access respite? The temptation is to stamp our feet and berate the NHS and County Council for not meeting our needs but it's just not that straight forward. William has been assessed as being eligible for overnight care, that is not the problem. The fact is that children are able to live with ever increasing medical needs supported by increasingly clever technology. As a parent you have to become the expert in your child's care because their life depends on it. Steve and I find ourselves uniquely trained to meet William's unique set of needs. We are a bit of a continuing care nurse mixed with a bit of a diabetes specialist nurse, with a bit of dietitian, physiotherapist, doctor, occupational therapist and intervenor thrown in for good measure. Where do I even begin to find someone else with this unique mixture of skills to care for my vulnerable, fragile child? The truth is I don't. There is no one. I can search for a best fit, the closest match, but they will never have the same knowledge and skills Steve and I have. 

So what's the solution? I don't really know! For us, I suspect the solution is perhaps in two parts. And I imagine these ideas would suit a lot of families in our sort of situation. 

Firstly, continuity/crossover of care is absolutely vital. The key to the success of our direct payments set up is that we have good carers who have a great relationship with me. The girls work with William in some capacity at school so they are seeing him most days. They've had the opportunity to become confident and familiar in his care needs and have had the training they need for the many medical tasks they have to carry out. But we are now also friends, so any little change in William, anything new we see, any thoughts we've had about improving something...we share it all with them via WhatsApp. We've been able to do this because we have become friends and because they actually care about William and want to know what he's been up to. They don't do it as a job or for the money, they do it like a grandparent looks after their grandchildren, because they want to be with William. If Steve or I aren't there these girls are the next best thing because they know William so well. Currently, I can only see a way forward with overnight care if our PAs are part of it. 

Secondly, I think we need to start flipping around the way we look at providing help and support to families like ours. The parents' expertise is unparalleled and they will always be best placed to provide their child's care. In many cases, especially where the child might be severely life limited, the parents will want to spend as much time as they can with their child and caring for their child. So why do we always look at taking the parent away from the child to release them to do other things? Some weeks we have carers in four nights from 4pm-8pm. We need this help, but that can mean I go a week with barely communicating with William. What if instead of paying someone to come and care for William all the time there was a balance, and sometimes people came and helped in other ways? What if someone came to clean once a week or to do some admin? What if someone cooked a meal instead of feeding William? 

Our local hospice are just launching a campaign (https://www.each.org.uk/support-us/fundraising/appeal---each-help-at-home) to raise money to start a service to support families caring for a complex child in alternative ways. This is very exciting! As my lovely friend Suzanne shared on her facebook page:

"Ok, so I'm not a natural fundraiser, but this, as innocuous as it seems, is a revolutionary idea within U.K. support paradigms. We want to be with our children, and yet the only support available involves people looking after our children. So much cheaper (and effective, and also meeting the needs of the families concerned), to do the jobs we necessarily put to the bottom of our "to do" list, where they languish for evermore. And that in turn affects the way we see ourselves. A cleaner or gardener does not require training in seizure support, tube feeding, sensory needs, sign language. And yet the impact of having a clean orderly house, dishes done, plants flourishing in the garden... immeasurable. So even if you don't feel that it's right for you to give, please share this far and wide, and bear it in mind when offering support to a family such as ours."

There's no doubt there's lots of types of help and support out there for families like ours but I know of more and more families whose needs aren't being met because they can't find a service to meet their specific needs. We need to rethink about how we provide care for our most complex poorly children so but the child's needs at the centre. 

It's just a bed...

William has so much specialist equipment provided mostly by the NHS. He has two oxygen concentrators, a nebuliser, feeding pump, standing frame, wheelchair, therapy chair, p-pod chair, acheeva bed, profiling bed, sats monitor, suction machine and sleep system to name but a few.

Baby William in his new bed

To me, all this equipment is part of William's life. Some of these things never leave his side. They help to keep him alive and well. They're part of our home and our daily life. And yet none of them belong to us and one day when William isn't here they will all be taken away. Our son will go and most of the things that surround him in day to day life will go too.

We've had William's bed since he was 15 months old. A lovely big profiling bed that has been such a massive help to us. It's been one of our longest serving pieces of equipment. William's bed is the one place where he calms down when he's grumpy and tired. He has always loved his bed and I've always believed he somehow knows his bed. He spends more time in his bed than anywhere else. Every night we shut William into his big cot and hope he'll stay safe until the morning.


For me, William's bed has always been the piece of equipment I always thought I'd struggle the most to see leave when William goes.

Big William on his last night in his bed

So this morning saw me saying goodbye to the bed. As William has gotten bigger and his other equipment has grown we've struggled with space, so we made the decision to change to a bed that does the same job but is better suited to our space restrictions.

I didn't think this bed would go before William so it felt really strange seeing it dismantled this morning and carried out. I took many photos of it yesterday so I'd remember it properly. It all seems to strange to feel so emotional about a change to a piece of furniture but, for me, the emotions of caring for a life limited child get so entwined with everything around him.

But onwards and upwards, the new bed is in, its much more practical (if a lot less pretty) and has allowed me to move all of William's bedroom around which always makes me happy!