Changeable Mum

For almost three years I was a sign instead of a spoken word. Eliza had regressed and lost speech, she could not say that word that so many mums take for granted, ‘Mummy’. It was hard sitting in play groups and hearing children calling for their parents whilst Eliza sat happily on her own in silence. There was no “Mummy, come look what I have painted” or “Mummy, come see”. We relied on Makaton sign language to communicate. I longed to hear her say the word but instead she tapped three fingers on the palm of her hand which is the sign for Mummy. I was so proud that she could sign but at the same time my heart ached to hear a voice. But she knew who I was, she knew I was Mummy and that in itself was wonderful.

When Eliza’s speech started to return one of the first words she said was ‘Mum’. I was cooking in the kitchen and she tugged at my top wanting something. I asked what she wanted and she pointed to a toy she could not reach, pointed to me again and said “Mum” before pointing back to the toy. I cried. I’d waited a few years to her speak and I felt overwhelmed and relieved. It gave me hope that other words were still to come. To me it was the most wanted word in the world and I finally heard it. Since that day I have been called a variety of mum related words – Mum, Mummy, MumMum (she even made me a label with this on from a label maker), Mummy-Pig, Mother (I know right!!!) and more often that I can count “Muuuum” which is usually followed by the following sentences –

“…….can I have…..”

“…..where is the…”

“…is dinner ready?”

“….tell him!” (Directed at small sibling who is usually causing ‘trouble’ ūüėČ )

I’m a picture visual on the daily board we have in the kitchen. I was a Makaton sign for a while. I’m a label that she made (that still sticks to my laptop). My name is shouted in both love and anger. My name is whinged and whined at when she doesn’t get her way. My name is mumbled through tears when she’s feeling unwell. On the odd occasion, my name is sworn at and lashed out at in frustration. Once she announced “Mother!” when her Wii U game didn’t load properly.

Whatever the name she uses and whatever the context or situation she puts it in, it’s who I am and I love it. I love her. And if you catch her relaxed and at the right moment and you ask her who I am, she will simply tell you that I am “Eliza’s mummy” with a huge grin.

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This was written for the weekly topic in ‘Finish the Sentence Friday’ hosted by¬†Finding Ninee¬†and¬†themeaningofme

 

 

The People You Meet…

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I’ve been alive for 40 years now so it is safe to say I have met a fair few people over the years. It is interesting how the people we meet change our lives and sadly some not always for the better but we learn from the mistakes, the pain and the negativity and we move on. I come from a large yet scattered and disconnected family although I am lucky to have a few amazing members of the family who have been, and always will be, there no matter what.¬†Some do their best to understand about Eliza and autism. I have a select few close friends that know everything about me and my life. I have quite a few what I call ‘passing friends’ that I may not see often, may not chat to often but they are friends. It’s just that lives are so busy and sometimes so very different that we don’t get the chance to be more than friends that simply pass each other here and there. Then there is this extra family that I have. A family I found over the last few years and it keeps growing. This family is also made up of wonderful people. Some I have never met and some I may never get to meet, a few I plan to meet and a few I have had the delightful privilege of meeting already. I met them all through my blog and through my Facebook page¬†Living With Blooming Autism

When you start to tell people your child is different, it can be a real make or break time between yourself and family & friends. Within months of telling people Eliza is autistic, our friendship circle didn’t just reduce, it pretty much disappeared. I was no longer welcome at coffee morning/play date sessions, Eliza was no longer invited to birthday parties. She was different and to some, she simply didn’t fit in with plans or ideas of how a child should be. Judgemental? Yes. Lack of understanding? Totally. The day a ‘friend’ told me to adopt Eliza to someone else so I could get on with my life was a moment that changed me and still¬†gets to me even today. At 40 years of age I panic at the offer of friendship. That fear of being tossed aside and pretty much abandoned (at a time I really needed people the most) is always there in my head. The pain I felt in my heart that my beautiful daughter was not wanted by others because she didn’t fit their perfect ideas and lifestyles is always there in my head. Luckily I have been honest and open to the lovely friends that I have and they understand why I sometimes take a while to put myself (and Eliza) back out there for things. It’s not easy to regain confidence after something like that which was caused by something you and your daughter have no control over.

A couple of years ago I started our Facebook Page. It was an outlet for me, a way to spread awareness and understanding about autism but also a place to share stories about Eliza and how she progresses. Through that page and then this blog I have met some amazing people. Some are becoming very close friends and quite a few I chat to on a daily basis or regularly. A few have even met myself and Eliza. Some are fellow page owners/bloggers, some are parents/carers, some are teachers, some are autistic adults. Quite a few are a combination of those groups. All different backgrounds, some different Countries and various ages. A bunch of amazing people. They all just ‘get it’ when I rant about stuff or celebrate something that might seem so small to others but these guys know how important it is. We learn from each other because every single life story behind each of us is so different. We share our celebratory moments with each other and sometimes our darkest ones. We pick each other up on the days we feel like giving up, we celebrate the successes of each other no matter how big or how small. We fight sometimes, we bicker (let’s face it life is extremely hard some days and we are all exhausted) but we make up and we move on without grudges. That is why I call them my¬†extra family. I need them. I like having them in my life. I love that they want us in theirs. Some of them I may have not met face to face yet, some I may never meet in person but they are part of my life through meeting online and making our own support network.

I love my family, my friends and I also love my extra family. Because of all the people I have met along the way, these are the ones that matter the most. These are the ones that are making me, me! The ones that accept and love us no matter what and continually offer support and understanding. Those of you that chose to walk away I thank you, because you helped make me the person I am today. Such a shame you won’t get to see the amazing person my daughter is. You chose ignorance over understanding and acceptance. Some of you just didn’t understand but rather than ask you moved on. You are missing out on so much. I will be fine. Eliza will be amazing. Because we have the people that matter.

This¬†piece was written for ¬†‘Finish the Sentence Friday’ which is hosted this week by¬†Finding Ninee¬†and¬†mardrasikora

She just keeps blooming

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This time 8 years ago I sat in a hospital bed waiting for Eliza to make her entrance in to the world. She was almost a week overdue and I had been taken in a day earlier to be induced. I sat there wondering what she would be like and imagining the things we would do together. I was also terrified and in that ‘first time mum’ moment. I sat panicking if I would be a good enough mum and worried about all the decisions I would be making in the future around , for and with her. I¬†tried to sleep thinking of all those firsts we would have – first word, first tooth, first school…. ¬†but having already been in labour a fair few hours I was exhausted ¬†but unable to rest because of all the monitoring and Eliza had decided being in the ‘back to back’ position was how she wanted to arrive which made the labour a lot harder for her and a heck of a lot more painful for me. Eventually Eliza was born early the next morning. I remember staring at this beautiful little bundle and thinking “It’s OK Princess, whatever happens we got this” and feeling all would be wonderful and amazing.

Less than 18 months later I found myself fighting my first battle, a battle to be heard because everyone was brushing me off and saying I was overreacting when I stated my concerns that Eliza was not progressing well in certain areas. So many people telling me “She’s just a late bloomer”, “She’ll crawl soon enough” and “It’s just a speech delay”.¬†Nobody seemed to listen when I said she had LOST speech, that we had actually had speech and it was like a switch had been flicked and it had been erased. Nobody seemed to care that Eliza didn’t even try to stand let alone attempt to walk and her crawling was done with much struggling. I was made to feel like a rubbish parent, one that overreacts and I was shown the door by the GP and various others. As Eliza approached her second birthday we should have been offered a ‘2yr check’ to discuss how she was progressing, any concerns etc (It’s offered to all children but these days done around 18 months old instead) but lack of Health Visitors at that time meant we simply got a letter saying “If you have any concerns, call us”. So I did. I called and was given the same old speel about allowing her to develop at her pace, each child is different blah blah blah. I knew all this of course but I also knew there was more to what I was seeing in Eliza so I shouted. I shouted at the lady on the end of the phone and told her “You need to LISTEN to what I am saying please!”. So after hearing the desperation in my voice she asked me to tell her my concerns. I told her the speech had started but then gone, that Eliza showed no interest in wanting to walk, that she played alongside kids but never ‘with’ them. That she did not communicate a single need, barely cried and was always frustrated. That Eliza could not hold a spoon or coordinate her hand to mouth at all and struggled with fine motor skills. That we seemed to have the most epic tantrums in the world over the smallest thing (which in later months I learnt about meltdowns and why the smallest thing would trigger them). We were called in for an appointment the same week.

Eliza was diagnosed at 3 years old as Autistic Spectrum Disorder with moderate-severe learning difficulties. It was a day of relief for me. I know that sounds odd to some. To know that I wasn’t the crazy parent I had been made to feel I was because there on this piece of paper was a reason behind my concerns and Eliza’s struggles. All the fighting to be heard had worked. All the waiting for appointments and then attending what felt like hundreds of appointments had got us to this point. The last five years have gone so fast. Teaching Eliza to use PECS (Picture Exchange Communication System) so she could communicate was hard work. She spent half her time throwing the PECS folder at the speech therapists head and the other half trying to eat the pictures! Eventually she realised this little book could achieve great things (well to Eliza it was mainly about getting food and going outside, her main priorities in life). We also learnt Makaton signing which she was really good at (to the point I often had to go google what she had just signed to me because she was so much better at it than I was). Around the age of 4 the spoken words started to return. The next couple of years her speech slowly improved and it soon became clear she could read extremely well but we just hadn’t been aware of it, she’d not been able to tell us till then. Eliza always used small sentences, usually 2-3 words at most to communicate until one day at School she decided to throw her opinion and advice out there. A hula hoop had been thrown a little high and had landed on the roof at school. Out of nowhere Eliza stated “You need a broom and a chair to get the hoop off the roof” (or similar words) and carried on about her business whilst her teachers, speech therapist and later on myself stood open mouthed at this speech that was also spoken in context. Needless to say we changed her speech therapy goals lol

So now, here I sit writing this and wondering where the last 8 years have gone. Our journey may have different twists and turns that I wasn’t expecting but that’s OK. We’ve still had all the firsts I mentioned before but the first word she said, I cherish because after speech regressed it took years to hear her voice again. Eliza never stops trying, she doesn’t give up. She is thriving in School and learning all curriculum, she reads extremely well and she is making friends now she has learnt to develop her social skills and interactions. She fights the anxiety that often tries to take over her life and over the last 8 months has tried so many new things including trick or treating and carol singing. Eliza changes every day in to a beautiful, independent, feisty young girl with an inherited sarcastic sense of humour that she gets from me. The journey has been hard at times but it has also been amazing. She just keeps blooming.

Happy 8th birthday for tomorrow sweetheart. Our journey may be different to others but it’s OK Princess, whatever happens we got this xxxxxxx

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It’s not you, it’s me and my guilt

It wasn’t until recently I realised I still carry a lot of guilt about what happened last year even though it was all completely out of my control. I feel guilty and that guilt is now impacting how I am as a mother and a person. I don’t like it and I am slowly picking it all apart and processing things so we can all move forwards as it’s not doing any of us any good. For those of you that don’t know our story, you can catch up here ¬†The pain of 2016.

Guilt is a self inflicted bully. It makes you do things you probably wouldn’t normally do and it tricks you in to making yourself feel better because of these actions. I went through a phase of seriously over spoiling Noah. I had slept by his side on a hospital bed for so many weeks last year. Weeks that eventually changed to months. Every time I opened my eyes there was my beautiful two year old….. covered in drips, drains, tubes, morphine pump. He was constantly surrounded by doctors, nurses, specialists. ¬†Every day I wondered if he was going to be OK, every day I questioned whether he was going to die. I felt awful that his sister, who relies on me so much, had been abandoned by me with no word of warning. Now I know you can’t plan and prepare for the unexpected but she was constantly in my thoughts because I knew she was struggling and fate had just removed me from her life for a while at the worst time possible. Three operations later and he is home, thriving. But the memories stay with me and have often triggered the anxiety I now struggle with that I never had before. So I fell in to a short time of spoiling him, doing everything for him because it eased my guilt a little bit each time. My heart and head were so happy he had survived everything that I felt this need to give him the world, or at least some extra toys and treats. ¬†However I soon realised this wasn’t good and it certainly wasn’t healthy or productive for any of us. I risked changing him and his personality because guilt sat there poking at me. Guilt also made me feel stupid for feeling guilty! After all it wasn’t my doing that he became so ill and needed operations. The brain is a crazy thing sometimes.

Reflecting on things like this are never easy but they are often necessary. I have been reacting a similar way with Eliza. I do too much for her. I know that now. Last year took a lot away from us all as a family and now we are back together I find myself taking over tasks that she can do herself. This morning I did her shoes up for her. They are one strap velcro and she can do them herself. The other day I tidied up around her whilst she sat and watched me yet I know she can tidy away her things. So why do I do it? Little things like this have just somehow fallen in to our routine and I just take over things that she can or could be doing independently. Obviously, being Eliza, she will let me because she trusts me and we are so close (perhaps too close to notice things sometimes) she will simply assume it’s a mum job and not question me. As above with her brother I think a lot stems from guilt that I left her for so long last year. I’d barely left her before ever and because I had no choice it made it so much harder to deal with. But then the additional or knock on guilt takes over – I’m doing too much for her, I’m taking away independence, I’m not being the mum I was before all this happened. The vicious circle starts and I need an exit. We have become stuck in a rut. Her because she lets me lead and me because I’m controlling things. I’m trying to make up for last year by over compensating and again chipping away at that guilt that sits there. I’m working through the guilt and trying to take a step back and let her be the feisty, capable diva I know she is. I’m not helping her and I know that but I am working on it and it takes time. I am human, I make mistakes, I have feelings, I feel pain. I too need processing time for certain events because life isnt all about smiles and good times, it often throws a lot of shit at you all in one go. I said before in a previous blog about something I came across via a friend regarding the future – That the best thing we can do for our children is to teach them how to live without us. It’s not morbid, It’s not something to be feared. It reminds me that actually that is what I do and need to keep doing. We won’t live forever and one day these children will have to live without us. It’s vital that I snap out of my guilt stricken behaviour for the sake of both children but especially for Eliza¬†who needs me in such a different way to her brother.

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Working towards warm coffee

I love those days where I get to relax and switch off. Run myself a lovely bubble bath and lay there for ages, choose a book to read at leisure and ignore the phone if it rings. Randomly call a friend to see if they are free and want to meet for lunch or go shopping for shoes and enjoy life at a pace that I choose. Spontaneously jump in the car and go and visit family or even have¬†a nap in the afternoons or take a yoga class. Ahhhh self-care, looking after me! These much needed moments to reboot my brain, process things and give my body a rest. It’s how I take care of myself……….. WAIT, that’s not quite right. Oooooh brain, what are you doing to me? Did you forget we have children, a house and endless appointments and a million and one things to do.

Let me give you an example of a typical day¬†morning in my life… (even I didn’t realise how long my day was, this blog could become a series discussing 24hrs so let’s stick to morning)

Dragging myself and kids out ¬†of bed early (ish), get them cleaned, dressed, fed and one ready for School remembering the packed lunch, reply to the fifty pieces of paper sent home by School the day before about photograph day, assembly, that I understand about the current bug going around, blah blah blah…… Throw in the bag PE kit, check I signed the reading book schedule, did I send money in for that School trip?, Should I send it again because I really can’t remember. Is today the day they go swimming? Has she got her shoes on? Answer the same question around fifty times “Can I have my kindle please” with the same reply “No because it is time for School, Kindle is for later when you get home” and listen to endless whining because that is the answer she really did not want so she starts with the “Oh but Mum pleeeeeeeeeeeeeeeeeeeease just for five minutes…..”

*School bus arrives and breath, that’s one out of the house for 6 hrs*

Chase the giggling toddler around to change his nappy because he thinks it’s hilarious to run around all stinky. Answer his constant request for cake/sweets/chocolate with a firm ‘NO’ for what feels like hours, build a Lego tower with him thirty five times to have him knock it down thirty five times because he likes that, tell him numerous times not to stick his fingers in certain places, please don’t feed the cats for the fifth time today, can we not throw crisps on the floor please and reply to the million times he asks “Wot dat mom?” as his thirst for knowledge grows. Phone School and remind them I¬†will pick the girl up early for an appointment later because I forgot to write in her communication book about it and then ponder the forty two mile round trip later for one five minute appointment. Did I put the kettle on yet?

Put TV on with rubbish cartoons that will keep him busy for a few minutes so I can get the laundry started because if I don’t then soon we wont even fit in to the room with it. It’s out of control, I mean seriously how many clothes do four people need??? The washing machine must hate me, it never gets a rest ever. I sympathise, I know what it’s like constantly on the go, I feel it’s pain…… Oh, wait I’m now giving the machine love, understanding and feelings. *Sleep deprived mum here* Make a cup of coffee. Unload and reload the dishwasher, sweep the floor because my children’s mouths are clearly not big enough and more cereal ends up on the floor than in bellies. Plug in the kindle to charge or they will be hell to pay later. Stand on Lego and yell (not compulsory yet seems a daily part of my life) and it won’t be the only time it happens. That stuff gets everywhere, how did it even end up in the kitchen! Empty the bin but first taking out dolly, random shoes, the TV remote and my phone that the boy has put in with¬†his attempts to be helpful and “I tidies up looksie” whilst praising him for lovely thoughts but explaining that we kind of wanna keep these items.

Find a toy that occupies the boy and offer him a snack so I can now go on the phone to chase up the missing appointment letter for his sister that they insist has been posted twice, call the pediatrician and get an appointment to discuss why the girl wants to eat paper, sponges, play doh……. they soon get the idea and an appointment will be posted (we’ll chase that in a few weeks of course). Call Doctors and order medications, call family back because they called like six weeks ago and probably assume I either moved or died, answer the phone to people trying to sell me insurances, new boilers or have I had an accident in the last however many months and would I like to claim something blah blah……. Answer the door for parcels and packages that are rarely mine but because they neighbours all work (and the postman knows I am always home) my stairs become a temporary post depot storing beautiful wrapped bundles of what feels like shoes, toys, car parts and the occasional mysteriously shaped package that takes up far too much of my mind as I wonder what it is. Down that cup of coffee I made two hours ago. Who cares if it is cold, it’s caffeine baby!! Chase boy around again having spent twenty minutes asking him “Where are your shoes?” and him answering “ummmmmmm” and throwing his arms in the air with a ‘who knows’ look about him before finding them in a plant pot because that’s where he decided they lived yesterday. I should get dressed, I’m not sure shopping whilst wearing ‘Harry Potter Rocks’ pyjamas are adequate or acceptable clothing for Aldi. Take the boy¬†food shopping and secretly want to tie his arms together so he can stop grabbing stuff and putting it in the trolley because I really don’t need a pack of liver, a dog toy or aspirin…. actually leave the aspirin in the trolley as I am feeling the need for one pretty soon and it’s not even lunchtime.

You get my point right? As parents we lead such busy lives sometimes we don’t even get to think about self-care let alone act upon doing it. We forget. We actually forget to look after ourselves. In my house I am last to bath, last to dress, last to eat and I often sacrifice any free time I have to do stuff for or with the kids. I have 2 small people that rely on me to get things done so yeah I always put myself last. It’s overwhelming and exhausting just surviving each day. Self Care? I’m pretty sure I do it but the basic minimum level. A quick five minute bath on the evenings might be the first time I got to myself all day. So I set myself mini goals – longer bubble bath, read a few pages of a book, do some crafting or card making as I love it and find it relaxing. I try and give myself time to be me. It’s not always possible because life is so busy and I am OK with that. I manage. My kids are happy. There are clean clothes for them, food on the table and they are happy. We read stories together, have cuddles and it makes the busy days all worth it. My goal tomorrow is to drink warm coffee (even I am not stupid enough to say hot, never gonna happen as I have a busy day ahead so lets say warm #smallgoals).

Thank you for reading. This was part of a ‘Finish the sentence Friday’ post hosted by the fabulous¬†www.findingninee.com/ ūüôā

You can follow us on Facebook at http://www.facebook.com/LivingWithBloomingAutism/

What do you think autism looks like?

There are so many things you can say to a parent or carer of an autistic person. Sadly some of those things are inappropriate, cruel or rude. One thing that I hear far too many times is just ridiculous. I bet you have heard it too often too…

“THEY DON’T LOOK AUTISTIC”

What kind of statement is that? I really don’t understand why on earth someone would think this is a good thing to say. I am a member of a few parent support groups online and today I have come across no less than 11¬†different parents that have been told their child doesn’t look autistic this weekend alone! Why? What possesses people to say something so utterly crazy? What do they think autism looks like? I am baffled, truly baffled at why we hear this all the time. So here it is, let me show you what autism looks like….

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Shocking isn’t it? She looks so much like a ‘normal’ young girl (another thing best not to say “Oh but she looks so normal”). She’s not green, she’s not a giant, she¬†doesn’t glow in the dark or multiply if she eats after midnight. She is simply Eliza, an autistic child. So again I ask why people think it’s OK to suggest she should look different because she is autistic?

You can follow Eliza’s journey on Facebook at –

http://www.facebook.com/LivingWithBloomingAutism

Has anyone noticed…..?

I live with a child that has moderate-severe Autism who needs 24/7 care and attention to ensure her safety and well-being. That child struggles with anxiety especially if I am not around, she is not happy when I go to work for my one night shift a week which is all I can do that fits around our life. She has no awareness of danger so social activities are stressful for me because I become more than Mummy, I become a risk assessor/body guard. It might be a wonderful day out for her because I planned ahead but it’s only gone well because I plan every scenario and in my head including¬†a map of all exits, car parks etc so we have a clear route away should she needs it. Family gatherings are exhausting for me as I try to keep a balance of activities and interactions I know she can deal with but at the same time pushing her comfort zones a little and introducing her to new things so she doesn’t miss out and starts to accept that the world can’t always be one big routine, things happen. I’ve lost count of the amount of times I have spent hours tidying up after a meltdown because the room looks like we’ve been robbed or bombed! Or how many times I have mopped poo off the walls, and bathed her because of her smearing episodes in the past. I am her Mum, carer, cleaner, cook, driver, receptionist, risk assessor, teacher, nurse, comforter, hairdresser, laundry maid…. everything.

I am full of jealousy for those parents that talk about their exciting plans for the 6 week summer holidays because even now, in January, I am sat here planning how we will survive them and they don’t even start until July. I have to keep a decent routine because she will lose the routine that she gets at school, so I have 6 weeks of activities to plan for to keep her busy. Throw in to that mix her younger brother who turns 3 soon, it’s far from easy. I will sit here and watch Facebook posts full of days out where friends have been. Trips to places that my child can’t manage because they are ridiculously busy. Some trips I simply can’t do because of safety. There is only one of me but two children to take out and both needing supervision for different reasons and they always want to be at opposite ends of the park. So who do I leave alone? The girl with Special needs that has no danger awareness of roads or strangers or the little boy who is too young to be too far from me for similar reasons? So we don’t attend because it’s safer, not easier as I am sure a lot of¬†people¬†think we just can’t be bothered. The friends that know us and understand appreciate how difficult a ‘simple’ trip to the park can be. Believe me, it’s no fun sitting here witnessing what we miss out on as people post photo’s all over social media.¬†BUT I know my kids and their needs, I also know my limits and to date I have never been able to split in to two so we have to pick and choose our days out wisely.

Apart from being mum, I am also wife to a husband that has mental health issues. He has struggled with depression for over 20 years and will be on medication for the rest of his life. Anxiety often makes his life even harder. Although he holds down a full-time job and generally lives a ‘normal’ life, his depression can impact us all as a family. On bad days he can get snappy easily at both myself and the kids. I have to become peace keeper and often keep the kids busy so he can have quiet time. I have to remind him to take his medications and order the next lot so he doesn’t run out. He loses stuff all the time and I mean ALL THE TIME. Passport, receipts for work, cables for his phone, wallet, shoes…. and it’s always me that has to find them. He moans if he runs out of clean socks or pants because he sees laundry as ‘the wife’s job’¬†without realising that perhaps I am up to my eyeballs in so many things, I haven’t quite got around to that pile of laundry. ¬†His expectations can be high but his view of what he thinks I can manage sometimes is a tad much.He recently had a bad few days which resulted in a trip to the mental health crisis team. A medication tweak and he is much better currently but at the time it is stressful for us all. Whatever happens though, I have to plod on with life. I have become the glue that they all rely on to keep us together, to keep our level of ‘normal’ going.

One thing I have noticed is the messages and calls we get to check how things are going. “How is he today?” or “Is Eliza OK after the meltdown at ……” and a brief conversation puts others minds at ease that all is currently well. Don’t get me wrong, I am thankful for those messages and I know it means people care but at the same time I can’t help but wonder if anyone cares how I am doing? It’s not a selfish thing, there are times I sit in these calls where I am answering the questions and queries and as I put the phone down I am thinking in my head “Yeah, I’m fine too thanks”.

Has anyone noticed that I am struggling?

Has anyone noticed I am exhausted?

Has anyone noticed how stressed I am?

Has anyone noticed how lonely I feel?

Can anyone tell that I am sick of being the one that HAS to cope and hold us all together?

Because the sadness of it is that often, the carer is forgotten. The focus is always on the ones that are being cared for and that’s fine and very much appreciated BUT please don’t forget the carer. There are only a couple of friends that actually ask me “…and how are YOU doing with all that is going on?” and they know the truth. They know I am struggling every day and they know I have no choice but to keep going. After all, I am the glue aren’t I? If the glue starts to dissolve we all fall apart.

I’m not asking for sympathy and I am not asking that anyone suddenly bombard me with messages all about me. I just know how it feels to have that constant pressure to get everything done and take care of everyone else. You feel last, you feel unimportant and you feel really lonely. Perhaps next time you call someone like me, just ask them how they are doing too because I am sure it’s been a while since someone asked and they really will appreciate it.