I want to alleviate the fear of death

The other day I caught up with the last Season of This is Us. It's been running for a while and is the story of three children and the ordinary and sometimes not so ordinary lives they lead. It has flashbacks to their childhood and their mother plays a prominent role throughout the series. I should stop here and say SPOILER ALERT don't read any further if you haven't watched the entire show. 

In the penultimate episode of the last season the mother is dying and the children and her family all gather to say their goodbyes. It probably wasn't the best idea to watch this but I feel that it was such a good reflection of the process of losing a loved one that I have to share my thoughts. 

It reminded me so much of our last hours with Zack. Being with someone as they slip away from you and being with a child as they pass is the most haunting, beautiful, calm, unnatural process. Knowing this day would come terrified me, the fear of what it would be like ate me up. Yet here we where. Zack fought on throughout the night and into the early hours, dying at 5.53 am the same time as he was born. I remember getting into the bed with him and his little heart beat so fast and he was so hot, his breathing noisy but he was gone, no response, just his body continuing on with the brain's instructions. I held his hand and cuddled him and told him how much he meant, how much I loved him, that it was okay and I was going to wait with him. I kept picturing us both sat on a bench together waiting, Im not sure who we were waiting for but we were waiting for someone. 

And when I watched the episode of This is Us called The Train, I got it. As Rebecca (the mother) slips away in her mind she is on a beautiful train, she meets a prominent figure in her life who guides her through the carriages where she sees her children, hear's their voices over the tannoy system and meets other significant others. Until she gets to the final carriage, where she turns and says I'm not ready to go in yet. But when she does she meets her husband whom she lost many years ago and she understands that she is safe and can now let go. At that point she slips away. 

I thought it was a beautiful analogy and I like to imagine that Zack was waiting perhaps for his Nan (my mother who passed a few years back) to come for him, to guide him over. I understand for some people this may not resonate with you, you may like to consider death to be the finality of life and that nothing more exists, But for me it gives me comfort to think that as Zack made his last journey, that he knew we were with him, he could hear us, he could feel us and he was comforted by our presence. 

I want to alleviate the fear of death. We don't talk about it enough, we are afraid of it. I was. I wish that someone had said to me we can keep him comfortable. Explained to me the process of dying, how the noises that they may make, the sounds of their breathing, the discolouration of skin are all a natural process. I was terrified he was in distress but as one of the lovely members of the Clair House team explained, he wasn't in distress in actual fact, it is more frightening and upsetting for family members. 

This is why I am continuing this part of Zack's story because I was so afraid. I knew we would one day lose him, And I searched and searched to find something that would perhaps ease my fears. Because above all else, above the thought of losing my most precious child I did not want him to suffer. I wanted to be reassured that his death would not be agonising, he would be afforded the peace and tranquility at the end of his life that he was not given at the beginning. And I am thankful that for whatever reason the right people where around at the right time. And we were able to give Zack that last final loved beyond end to his life. His most wonderful short life. God I miss my boy. 

Discussions about Advanced Care Plans

I walked into the room where my son lay, he was still on the transfer trolley. He was asleep, unaware of what was going on around him. They transferred him onto the bed, took him off the monitors and placed him on oxygen. 

We thanked the ambulance staff, the anaesthatist and then we were left alone with the palliative care doctor, the nurses and a couple of staff members at Claire House. 

I stroked Zack's head, whispered how much I loved him, kissed his face. Scarlett, and (I will write about sibling grief at a later stage) hugged him, upset and afraid. She later told me that she told him she wasn't going to leave him and she would stay with him until the end. Again, I can't cover this here, but I need to say the bravery that it took for this little girl to go through what she did still takes my breath away.

Afraid. Frightened. Worried. Terrified. Panicked. Anxious. These adjectives are only a fraction of an expression about how we felt during the period of time that Zack deteriorated. It completely knocked us off our feet up when we accepted he was dying. I think the words a doctor used were "he is actively dying and has been for some time." 

I'll do my best to try and be clear about my thought process. As Zack got sicker and needed longer hospitalisations, it slowly began to sink in that one day and at this point we didn't know it would be so quick, but one day he would leave us. We would have to make decisions about what care we wanted for him during the end of his life. 

When you come to this stage of caring for someone with complex needs there begins discussions about Advance Care Plans. 

I had never even considered an Advance Care Plan for Zack, occasionally I would read on forums for parents of special needs children that they had them in place including DNRs (a do not resuscitate order). I would think how could you ever get to that point, why would you choose to do that?  But that is where Zack's journey took us. And thinking back now, all the ups and downs of his life, all the hardships and difficulties were nothing compared to this last part of his time here on earth. 

We began to consider an ACP during one hospital admittance, when it was suggested by a doctor that maybe we should begin to discuss this with his consultant. We met with a community nurse not long after who kindly brought round the form that we would need to complete so that we may look at the questions before we arrange a meeting with his consultant to discuss. 

The ACP covers our wishes in the care and treatment for Zack. It can be changed at any time and is usually written with guidance and help from other professionals. Effectively it is specifically asking as Zack was nearing end of life what care we wish to have provided for him. I won't go into all the ins and outs as we never got chance to complete the form. But there were areas covered such as how much intervention we would want for Zack, whether we would want him to be put on a ventilator, whether we would want him resuscitated. What was important to Zack, what would we like him to be able to do, where would we want him to be looked after during end of life. Even his funeral. I know, as if, as a parent you should be thinking about this, but realistically and pragmatically for some it helps for other parents it doesn't.

Our thought was that whatever happened the most important thing for Zack was his quality of life. If he wasn't going to improve by medical intervention, if we were keeping him alive artificially then it would only be for our benefit not for his. 

As I write this I still can't fathom how we even got to this point, how we were able to make these choices for him. I feel incredible guilt that I let him down, that there could have been more I could have done. Yet as I look back and remember the number of times his body was pumped full of IV antibiotics, his stays in hospital, the need for oxygen. How he struggled through the last months, each time getting a little worse. I knew I couldn't let him down any further, we had to let him go. I look at those words, let him go. How could I? How did we? 

All the doctors said that there was no more that could be done for him. But was there? If I am honest I feel that I let him down. People will tell me we didn't, doctors tell me we did everything we could he just couldn't battle any more. I know logically what they say is true, but as his mother, I will always carry the feeling that I didn't save my baby, I didn't protect him. Perhaps that guilt will always stay with me. 

Perhaps a morbid read

Recently we returned to Claire House. I hadn't visited since Zack's death and to be honest, I don't think I was prepared for the affect our return would have on all our grief.

We went to complete the pages for Zack in the memory book. I can't decide whether I find or found it comforting or distressing. 

Zack's entry in the memory book

Claire House Hospice on the Wirral was to be our saving grace in the last part of Zack's life. The doctors both there and at the hospital moved heaven and earth so that they could transfer Zack for end of life care. 

The first hurdle was to be the transfer and an ambulance from another Liverpool hospital very kindly offered to undertake this journey. Zack was still on High flow oxygen and fortunately the hospital had a portable version to use for transfers, It required an anaesthetist to travel with him and as it turned out it happened to be the original anaesthetist who saved his life two years ago. Now here we were with a very different outcome inevitably coming our way but an opportunity to say thank you to the doctor that bought us more time with Zack. And I did, I thanked him and he put his hand on my shoulder and said please you don't have to say thank you it's what we do. 

Yes it is what they do,  they do this day in and day out, saving lives, sometimes not being able to save lives and sometimes walking a little of the way during the end of someones life. It is only when you experience how great our medical care system can be that you really do appreciate it. And as you know, I have experienced both the good and the bad. But for Zack, I was determined that his life was not going to finish as it began and for those people involved I am forever grateful.

Now I know this blog has become somewhat depressing, perhaps a morbid read, but it is Zack's story after all and the end is sad but as with his life it was also interspaced with laughter. 

Laughter? Yes, laughter, in the dark, there was laughter. It's a strange concept isn't it?  But grief has an odd way of twisting you from one emotion into another without much warning. And whether your grief allows you only to feel sadness, or hopefulness, or regret or even laughter there is no right or wrong as I am beginning to discover.

Just as our lives with Zack were always full of laughter and constant dramatic interludes, his death was no different and I think even he would have found this story hilarious. So forgive me if you think, shock, what poor taste, but it isn't it was just another dramatic comedic interjection in Zack's life and a little light relief that was needed at the time. 

Back to where we where then, Zack was comfortable in hospital, on high air flow and they were getting him ready to transfer to Claire House. Dan was going to go with him and I was going to meet them at the hospice.  

Sounds simple you would think. Nope. Dan and Zack successfully got to their destination, myself on the other hand got lost in the middle of Liverpool unable to find the place and I reached a new state of stress. Four phone calls I received from Dan asking where I was as they needed to take Zack off the High flow and put him just on oxygen. The concern was that they didn't know how long he had and we might not make it in time. 

And again I don't know how I knew this but I did, look, Im not turning into Sally Morgan UK psychic, call it intuition or a gut feeling but I knew Zack would wait and it wouldn't be until the next morning we would say our final goodbye. So whilst I was stressing, there was also an inner voice that I trusted, I knew we would be okay.

By the fifth call Dan said they are going to blue light you in stay where you are and a police escort will find you. "Seriously",  I said.  "Yes", he replied. 

Apparently the conversation in the hospice went alone the lines of,  "Do you want us to get her a police escort here?"  To which Dan said "Can you do that?"  "Yes", they said, "Watch this."

And sure enough within five minutes I had a call telling me to go to the tunnel wait there and someone will come and find you. Four police cars later driving past, none for us, we went through the tunnel. 

A second call from the police, "Where are you?"  "Well on a dual carriageway opposite a shopping centre." Cue blue lights going past me. Another call, "Where are you again?" To which I replied,  "He's just gone past me." Honestly you couldn't make this up. The loveliest police officer finally found us and said, "Do you want to get in here or do you want to drive your van?"  To which I replied, "You joking I'm not leaving the van here I'll never see it again." Sorry people of Liverpool, but it was a proper dodgy part. 

What followed was the fastest I've ever driven down roads following a blue light going through every red light. Scarlett in the passenger seat beside me said, "Oh my god mum you've gone through a red light, this is mad." 

We eventually made it. Waiting outside a row of people, a doctor, a nurse a WAV abandoned sideways at the front and a quick thank you to the police officer.

Zack was still with us, oblivious to the drama his mum and sister were involved in but we all knew he would have found it extremely funny. That even now he was the epicentre of the dramatisation of our lives. 

You aren't failing him

A few days before Zack passed away the weather was glorious. Our carer was not at work as her partner had caught Covid to play it safe we decided it would be better if she remained at home too.

That week I had Zack all to myself. And I don't know why and I don't know what made me think like this, but in my heart I had a gut feeling that time was slipping away. 

For the first few days Zack seemed reasonably okay, to a point were we sat outside just the two of us and painted some pictures. We enjoyed the lovely sun and the birds singing, peacefully, happy in each others company. Below is the last picture I took of Zack. I knew. I knew where we were heading.

On Thursday Zack took a turn for the worse. He was working harder at his breathing, even with his oxygen set at 1% we were having to increase it just to keep his saturation levels up above 86. 

He began having repeated dystonic episodes. Periods of his body stiffening, like someone was forcing him to stretch out. It would torture him, plainly uncomfortable and we had no control over it. We took him into the local hospital. They said he had some fluid in his lungs gave him some medicine and sent him home. It was not our usual doctor who saw him and looking back now I think this was our biggest regret. We should have fought to get him something to make him more comfortable. What followed was a night trying to manage his dystonia on top of keeping his oxygen levels up. Sometimes he would settle, sometimes he would struggle. 

By the morning it was clear we needed help. We needed to get him to a hospice so we could begin palliative care. 

I have very mixed views of the NHS, very mixed views about doctors and community care. However in our darkness there were some shining lights who grabbed our hands and held us up. No, that's not quite right. From this point we were held up by an array of amazing people. 

I rang the community nursing team, I explained the situation and within thirty minutes I had two nurses with me. They got hold of Zack's doctor and they rang for an ambulance. 

Dan and I knew Zack was dying and one thing we had always discussed is that we did not want him to pass away in hospital. 

Hospitals are wonderful places, there in our hour of need, saving lives, fixing us, helping us. But hospitals also fail us, people make mistakes. And Zack's birth was one with a catalogue of errors and a birth forged in distress and pain and darkness. We didn't want his death, his end, his goodbye to be like that. We were clear that we wanted him to go to a hospice. 

Never have I asked for help. Never have I wanted someone to pick us up and just hold us there but now was the time. I needed to just be with Zack and I couldn't do it on my own. We couldn't do it on our own.  

Remember the Advanced Care Plans I talked about. We hadn't got to the point of completing them and we had only just had a referral put into the hospice so there were other bits of tape that had to be cut in order to get us where we needed to be. 

For now Zack was once more blue lighted into A and E. I eventually caught up with him in resus along with his doctor and Dan. I looked at him on the bed with his oxygen mask on and a cannular once more in his arm. Once more for the 50th time a needle stuck in him and I said "What are we doing? Why are we doing this to him?"

I distinctly remember saying those words and I hear them back in my head over and over again. I think why didn't I just shout save him, fight for him, do everything you can. But instead I looked at him and in my heart I knew to do this would be to prolong his suffering just so we could hold him with us for even longer. 

What followed was some very, very frank conversations. 

His lovely doctor who went above and beyond what any other doctor has done for us remained on ward and visible throughout the day. We were moved to a ward room and we met with a palliative care doctor from Clair House and a rapid response nurse from the same hospice. Zack slept comfortably on his bed complete with high flow oxygen, oblivious to the decisions being made about his care. 

They explained that they were going to do everything they could to get him over to Claire House in the morning. They weren't sure if he would make it until then, they weren't sure if he would pass away on route in the ambulance. But they would do their best to meet our wishes. 

I looked at the doctor when she asked if we had any questions and I said to her, I said to them all. "I feel like I am failing him. I feel like I am letting him down, giving up."

She looked at me and she said, "I've looked at his notes, I've spoken to his consultants and to his respiratory consultant. We all agree IV antibiotics will not work for him."  And as gently as she could she said "Zack has been actively dying, and you aren't failing him you are helping him you are doing what's right for him, you are not allowing him to suffer any further. To keep going, to keep treating him, would not be in is best interests." 

And there the truth lies. I didn't understand when the nurses hugged me and said you are being incredibly brave or when his doctor hugged me in resuss and told me the same thing. Now I understand I was doing the unthinkable, what no parent should ever have to do. I was calling it out, shouting it loud and clear, we can't save him. We have to let him go. 

And believe me I battled and still battle and most likely will battle with that for the rest of my life because ultimately I could not save him. Me, his mother, his protector, his voice, his advocate, the one person he could rely on totally and completely could not save him, instead I said no more and broke down in tears. 

And in that decision I made, we made. We freed Zack, free form the pain, the constant medical interventions, the difficulties. Free to finally be at peace. 

I think Zack new this, I think he knew were he was going and there was peace in that for him. We just didn't know how quickly that would happen. 

Progressively worsening admissions

Zack remained reasonably well until around May of 2021 when he was admitted into Warrington Hospital requiring oxygen and antibiotics. 

What followed was a series of progressively worsening admissions into hospital. From this point until Zack passed away he had nine admissions. This period became our battle ground, looking back now I can see how we were in a constant stream of stress, fight or flight, we were battling to save his life. 

As each hospital admission occurred the need for oxygen increased, the use of stronger IV antibiotics was required. We got to the point whereby we were being trained to provide Zack with chest physio twice a day, nasopharyngeal suctioning, giving saline nebulisers, colomycin nebulisers and oral antibiotics. 

Our world became a routine of chest physio and suctioning just to keep his secretions clear. And as for keeping a check on his oxygen saturations, that was constant. 

Each added routine medical instruction was chased by ourselves. During one admission the respiratory doctor changed his oxygen saturation levels to go from over 92 to anything above 85 is fine as long as he isn't going blue or working hard. I think what this doctor failed to tell me at this point was that Zack was in respiratory failure. 

I remember asking in one consultation, following a bad admission for an infection. Is this it? Is Zack deteriorating? To which I was told no, this isn't his new normal. Itt was, it was to become his new normal. His lungs had colonised pseudomonas, a nasty bacteria, notably difficult to ever eradicate. Despite our best efforts of chest physio that tried to loosen the sticky mucus off his lungs we could never clear it. 

I remember one day going through Zack's daily routine, patting his back for five minutes trying to clear his lungs. He looked over at me, as though he was saying enough, enough. You can't win. And we couldn't win. 

It took a new consultant to speak to us frankly to confirm what I knew. Zack's lungs were failing, despite all we were doing, his body could not support him any longer. His body had grown around the injury of his brain and he was now struggling.  We talked about advanced care plans, about what we may or may not want to do. What interventions we would follow. 

After this meeting Zack didn't give us time to complete the plan, as usual Zack took matters into his own hands and he lead the way. He took us by the hand and walked us through his final journey. 

Let me start from the beginning

Do you remember Covid and the pandemic when we all had to be locked together in our shared accommodation day in day out. Home schooling, working from home, being in each others constant company 24/7? 

I am so thankful for that time. That time that slowed the world down. It was a tragic time, with so many families losing loved ones, frightening and foreboding. And yet, as I look back, seeing where I am now, I am thankful that we got to spend so much time with Zack. 

We made the decision very early on to keep Zack out of school. In fact, he was on the vulnerable list so had to shield. Covid was our enemy to be feared, we had no idea what it would do to him if he caught it. How little we knew then that it would not be Covid that took him from us but another respiratory condition that would create our biggest battle.  

Let me start from the beginning.....

Throughout Zack's life he did not have very many issues with chest infections. Yes, occasionally he had a few a year but they were always dealt with at home with antibiotics, we didn't have too many admissions to hospital. Our biggest worry with Zack health wise was always his epilepsy. Everything else were just some side issues, nothing to worry about. That was until October 2020. I think that was the day everything changed.

Zack hadn't been so good over the previous couple of days. At night we use Arlo cameras to watch over him. Whenever he makes a move or a sound it pings to our mobile phone. Sadly this night, the cameras did not work and we found Zack at 5am on his back gasping for breath. He had been sick and somehow managed to wiggle over onto his back whereby he had aspirated. I was terrified. We called for an ambulance, the first time in his life we had ever needed emergency care. Fortunately the first response came quickly and then the second response. We were rushed to A and E. At this point Zack was still in a very bad way, he was having several seizures one after the other. The emergency doctors went through a number of procedures to try and get Zack's oxygen levels back under control. 

They couldn't. An anesthiatist consultant spoke to me and said we are going to have to ventilate him and transfer him to Alder Hey Children's Hospital. My world broke that day. I thought I would lose him. I pleaded to do something else, to not ventilate him. This consultant, this lovely man, (whom I would meet again at the end of Zack's journey) said it was all they had left to do to save him. And that was the day Zack was ventilated for the second time in his life. 

In recovery

We were transferred to Aldey Hey Intensive Care and Zack was stable. Zack being Zack decided that having artificial breathing was not for him and it was removed the next day and he was placed on high flow oxygen. However, dramatic as he was, he decided just before they were going to move him to HDU to drop his oxygen saturations to 70 whilst not going blue in the face nor looking like he cared. The nurse hit the button for the crash team to which many doctors came running into the room. Again for a second time I thought he was going to die that day. 

Turns out he had plugged his throat with some mucas which the physiotherapist moved via suction. Zack was so sedated by the drugs and tired with his illness that he wasn't strong enough to cough or move the secretions. What followed over the next six days was a move to HDU, many IV antibiotics, chest physio, suctioning and a weekend stint on a bipap machine. We made it to a ward for a day or two and then we were sent back home with one fixed Zack. 

Like nothing dramatic had ever happened

He had a bad chest infection and had aspirated causing a collapse in the left lung. For me I think this was the beginning of the road that would eventually take Zack from us and the start of our battle with all things respiratory. 

Exposing our grief

 Hi, this is the hardest and most difficult post I am having to write. 

I haven't been on here for a very long time updating our wonderful, manic, crazy life and there are many reasons for that, some I can't explain and, well, I just haven't felt like writing.

But now I do feel the need to write again, but this journey has taken a different turn, ultimately one I knew would come and one I could not stop.

Sadly Zack our wonderful, gorgeous, brave beating heart of our family passed away at Clair House on 3rd April 2022 aged 13 years. 

Thirteen amazing years we had the privilege of sharing our lives with Zack. And so this blog that began and was written to help others at the start of their journey is now going to expose the most difficult, darkest side of our paths.

I can't say it will be a cheery journey all the way through, I'm probably and very vulnerably exposing our grief. But I want to allow others who may now be facing this stretch that there is hope, there is light.

I also have much to reminisce about, to catch up on that I can't leave the last few years of Zack's life untouched. View this next chapter as the Upside Down side of life if you will, another existence but one that can still offer brilliance even in its darkest moments.

The following is in memory of Zack, my love, my heart, my forever.

Our last photograph of the legend

Hey, Haigh Woodland Park

We are in the middle of the summer break. 

Summer break. Before it begins the mere thought of it fills me with dread. How on earth am I to fill six whole weeks, oh, no hang on, six weeks and two days with fun, laughter and memories. Aaaaaah, yes the cherished memories. We really do make this hard on ourselves, to be honest youngest one would be happy to eat blue slush all day and watch Horrible Histories back to back (at least its educational although dodgy on the nutrition side).

Yes, I do fear the summer holidays, but after the first week is out of the way I quite enjoy the endless days of pleasing ourselves, meeting with friends, going on adventures and even just hanging out at home. 

We went off for a visit to Haigh Woodland Park the other day. It's rather pleasant, lovely courtyard with a nice cafe, shops and a bakery that makes the most fantastic fresh sandwiches. A joy to eat outdoors whilst fighting off the wasps. 

Just doing the tree climb thang

It has a great play area. It's huge with lots for kids to play on, clean, tidy and safe. Scarlett was off enjoying all the equipment whilst Zack and I sat and watched. 

And here is my issue with Haigh Woodland Park. All this money spent on fantastic equipment and nothing, not one piece of equipment that my son can use. 

Sorry, wait I must apologise there is one iddy biddy token of a net swing. You know the round tyre shaped swing that has a large net upon which kids can lie across. But seriously, that isn't enough. It's not inclusive, it's exclusive to those kids that are able bodied.

Victoria Park in Widnes on the other hand has tried to be inclusive and whilst we are still a long way from it being perfect they've made more of an effort.  A roundabout for wheelchair users and bucket seat swings offering a little more support (still not suitable for Zack).

Inclusive roundabout

Friends on their travels have told me that Sefton Park has a wheelchair swing. Yes a swing upon which you can plonk a wheelchair. Who'd have thought of that.

Surely we can create a play area that is truly inclusive without the obligatory token gesture. I hope that one day this will happen. It would be wonderful to take my son out with his sister so that they can both play together, rather than one play and one sit and watch. 

We still had a nice day and Scarlett ended up with a blue slush........she'll look like Violet Beauregarde by the end of the holidays.

What a nasty man

Aaaaaaahhhh the joys of a holiday in a caravan. Cheap, cheerful, full of fun, exciting times when you are a six year old. Like you've fallen on hard times when you are a forty-something. 

Alas, that is where we spent five cosy days during the first week of the Easter holidays and we had a brilliant time. All shacked up together in a small plastic cabin and not one argument between us. 

We hired a rather nice adapted static caravan. Excellent ramp straight to the door, not so excellent flushed access from the ramp and over the threshold but better than lifting over several steps. Lots of room inside and a large bathroom with a shower seat.

It was during the evening of day one that Dan first pointed out the height of the sink and cooker or lack of it. Of course, adapted means everything is lower for wheelchair users. 

Beds were a thing of torture but bearable yet it allowed us to have an adventure and spend time together which we haven't been able to do for a while. 

As it turned out Zack was much happier at base camp than going on a tour of beautiful North Wales. 

We visited a few towns, which, whilst quaint in nature seemed to have not moved past 1959. And don't get me started on lack of internet facilities. Day two of my unplanned digital detox had reached fever pitch by my cries of "Why is there no wifi?" By day three I had learnt to accept my holiday life and was a much more relaxed human being. 

Swimming was a daily activity, adventure was a given and falling into a dress rehearsal for a musical was a fortunate event. 

Pottery was painted and a child's gambling habit brought to the forefront by a determined father to win at the Trolls grabber machine even if it left him destitute and penniless. We were never successful and probably twenty quid out of pocket. 

There was a lot of eating. A lot of eating. But most of all, a lot of laughter. 

We encountered back to the dark ages disability discrimination from a lady of a certain age in a tatty old shop. 

This equated to a stand off between her, Dan and Zack. She being of the mind that he was not getting down the corridor of tat and Dan specifically telling her he was and he will and by no means is his son being forced out of a shop. End result, said lady of age going back behind her counter and in a loud voice making the statement, "What a nasty man." 

Ding, dong, round two. Now I'm involved defending the 'nasty man' and trying to explain that it wasn't very nice to not try and make the shop a bit more accessible for people with disabilities. She didn't care, she worked there six days a week she told me. I walked away knowing you can't educate the ignorant.

All that didn't matter when we watched a show that included children who were on holiday, one of which had cerebral palsy like Zack. The staff working in the show (are they entertainers? well you know the type, theatrical, sing a lot) made every effort to include her and she had the most beautiful voice when it came to her line to sing. 

You can't always get equality, but it's there in between the dark, pushing through. 

Disability equality aside, our staycation was a massive lump of joy. These are our good days and our lucky days. And when you have a child like Zack you treasure them even more. 

Farted on with glitter

Zack and his pals (Harry and Cameron) went to The Lowry on Saturday to watch Home. It promised to be a show that incorporated sensory interaction created especially for audiences with PMLD (Profound and Multiple Learning Disabilities). We were not disappointed.

We had an absolute ball. What a fully interactive, immersive, engaging performance from Frozen Light Theatre. You can read all about them on their website, it is clear to me that they have a very good understanding of how to engage with people who have PMLD.

I am still gobsmacked at how good they were, it's the first time I have been to an event that completely and utterly captured what it means to reach out to someone like my son. The performance blended all five senses, we didn't just watch we felt it, we heard it, we could smell it and we could touch it. To Zack that is conversation, that is interaction and that is bringing the world to him. 

The story follows two characters stranded within a desolate world ravaged by sand storms left behind to fend for themselves. It touches upon fear, hope, survival, friendship. I mean if I wanted to deeply explore these themes that's possibly the life span of a special needs parent.

We move through their journey and in a variety of creative mediums we become part of the performance. Within the first two minutes we looked like we had been farted on with glitter by Guy Diamond. Then we got to sniff some rather pleasant smelling clothing items. Lovely.

There were bubbles, more smells, flavoured water sprayed on tongues, some weird contraption that made massive long foam bubbles. Zack loved it all. 

The best part was when they came round and asked each child their name incorporating it into song. Repeating their name over and over again. In fact, can I point out that not only were the cast talented but they also managed to memorise each child's name throughout the time we were there. I mean I can just about remember my name at the best of times. 

And lets not forget the talented chap who played a plethora of instruments. He came round with guitars and saxophones and gongs. Again a massive tick in the box for engagement. 

You see what they set out to achieve is to reach those who don't ordinarily get to see or experience live theatre and they did it and then some. 

To me they are leaders in their field. Massive standing ovation. Loved it.

By the way, Zack's wheelchair still looks like it's gone ten rounds with a gold glitter gun but we don't mind it was totally worth it. 

Wake up theatre world, take note, we need more of this. 

*Special thank you to Yasha and Sarah for letting me steal their photographs.

You ever searched for a foxes tail on ebay?

Yesterday was World Book Day.

World Book Day is officially a thing. I think it became a definite thing a few years back, but now it is a definite thing, rather than just a casual thing.

I know this because supermarkets now stock up on character costumes at least eight weeks prior to the event.

I quite like World Book Day. I like books and I think if it creates more interest in books for children then that's no bad thing.

What is bad is the fact that you now have to add in another costume outfit to your already busy schedule of general costume/craft/baking/Easter frigging bonnet making itinerary throughout the year. 

My two went in as Fantastic Mrs Fox and a blue bear that gives out free hugs (I made that last bit up, but he had received the outfit as a birthday gift and it came in useful). 

That Mrs Fox though! I tried to suggest she went as Veruca Salt, easy costume, golden egg, done. She certainly has the temperament nailed. 

Oh, no. It was Mrs Fox. This equates to one yellow dress, painting on red apples, finding a fox mask and painting that because the one off ebay didn't arrive as it's from pigging China!

Lastly finding a foxes tail. You ever searched for a foxes tail on ebay?  No, neither have I. But this is what you discover when you search foxes tail.......(clicked on the link, because I'm not putting that picture on here!)

Huh.

Yep.

Look if that's what people are into, well, fine. And I'm not usually surprised by things but wow. Okay.

Obviously that was an unsuitable tail so back to my search which finally lead to some fur detachable collar off my coat folded in half and pinned to a belt. Job done. 

So yes, World Book Day, a great idea. A pain in the arse for me. (Sorry I couldn't help that.)