tag:blogger.com,1999:blog-81424070078700869912024-03-05T08:54:37.352-08:00The boy with five namesThis isn't my blog, it's Zack's. Zack arrived here seven weeks early, he had no heartbeat and wasn't breathing. He suffered catastrophic damage to his brain, he has cerebral palsy, problems with his hearing, vision and feeding. Our lives are both challenging and extraordinary. He is a gift. I hope that for whatever reason you find yourself reading this blog it can go some way to help those in the same situation and some way to remove the cloak that covers parenting a child with disabilities. nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.comBlogger289125tag:blogger.com,1999:blog-8142407007870086991.post-15301704841339048932022-12-13T02:36:00.000-08:002022-12-13T02:36:04.002-08:00I want to alleviate the fear of death<div><span style="font-family: arial; font-size: medium;"><br /></span></div><span style="font-family: arial; font-size: medium;"><div>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. </div></span><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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. </span></div>nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0tag:blogger.com,1999:blog-8142407007870086991.post-35880746693242750832022-09-26T01:35:00.002-07:002022-09-26T01:35:44.909-07:00Discussions about Advanced Care Plans<span style="font-family: arial; font-size: medium;">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. </span><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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." </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">When you come to this stage of caring for someone with complex needs there begins discussions about Advance Care Plans. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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.</span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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. </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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? </span></div><div><span style="font-family: arial; font-size: medium;"><br /></span></div><div><span style="font-family: arial; font-size: medium;">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. </span></div>nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0tag:blogger.com,1999:blog-8142407007870086991.post-36123986660356421552022-07-19T03:15:00.005-07:002022-07-19T03:15:49.314-07:00Perhaps a morbid read<p><span style="font-family: arial; font-size: large;">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.</span></p><p><span style="font-family: arial; font-size: large;">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. </span></p><p><span style="font-family: arial; font-size: large;"><br /></span></p><p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3-yHl11Apwr-UWx8TEfeMlisGCqGM5NUUiFUVS81BwQF8rAGLZNL_RTPTaApmkaWi8mbTWhPb9GgUCvBtoObnh6akdvOZhxNv2LB0fY0J903A3oTv2zNw5l_JTNB2MBMhnTONKcAizguGqTr5hLPTi9CIyp3I_22q-TW3LeuTTGkMFQPRcEeGickTog/s3961/2322D9E1-61B9-450D-BAA8-BA24D6556815_1_201_a.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: arial;"><img border="0" data-original-height="2861" data-original-width="3961" height="345" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3-yHl11Apwr-UWx8TEfeMlisGCqGM5NUUiFUVS81BwQF8rAGLZNL_RTPTaApmkaWi8mbTWhPb9GgUCvBtoObnh6akdvOZhxNv2LB0fY0J903A3oTv2zNw5l_JTNB2MBMhnTONKcAizguGqTr5hLPTi9CIyp3I_22q-TW3LeuTTGkMFQPRcEeGickTog/w478-h345/2322D9E1-61B9-450D-BAA8-BA24D6556815_1_201_a.jpeg" width="478" /></span></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><b><span style="font-family: arial;">Zack's entry in the memory book</span></b></td></tr></tbody></table><span style="font-family: arial;"><br /><span style="font-size: large;"><br /></span></span></p><p><span style="font-family: arial; font-size: large;">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. </span></p><p><span style="font-family: arial; font-size: large;">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. </span></p><p><span style="font-family: arial; font-size: large;">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.</span></p><p><span style="font-family: arial; font-size: large;">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. </span></p><p><span style="font-family: arial; font-size: large;">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.</span></p><p><span style="font-family: arial; font-size: large;">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. </span></p><p><span style="font-family: arial; font-size: large;">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. </span></p><p><span style="font-family: arial; font-size: large;">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. </span></p><p><span style="font-family: arial; font-size: large;">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.</span></p><p><span style="font-family: arial; font-size: large;">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. </span></p><p><span style="font-family: arial; font-size: large;">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."</span></p><p><span style="font-family: arial; font-size: large;">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. </span></p><p><span style="font-family: arial; font-size: large;">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. </span></p><p><span style="font-family: arial; font-size: large;">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." </span></p><p><span style="font-family: arial; font-size: large;">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.</span></p><p><span style="font-family: arial; font-size: large;">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. </span></p><p><span style="font-family: arial; font-size: large;"><br /></span></p><p><span style="font-size: large;"><br /></span></p>nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0tag:blogger.com,1999:blog-8142407007870086991.post-39451202498118950812022-07-04T02:13:00.000-07:002022-07-04T02:13:47.609-07:00You aren't failing him<p><span style="font-family: arial; font-size: medium;"><br /></span></p><p><span style="font-family: arial; font-size: medium;">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.</span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">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.</span></p><p><span style="font-family: arial; font-size: medium;"><br /></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBx2OC8AUEHF1CACWxoNe62pSP-IHXbm9gfXX-J14AhY5MU8iKb_Eeh1_Yk1yZtuyZfCfxRs61eqGjLKFTw9Wbm08Ku3JaRfE3qImh-kxdncEzQaGKSIvppF8-3XmxTke70eobI_ZKxlJ5Nkle5S6_r5dmI77Md_Oc9wNrKqAF51zbVsh3qFpaWJ98gw/s1800/3831C577-B901-4978-B436-E3573AE00F4E.jpeg" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: arial; font-size: medium;"><img border="0" data-original-height="1800" data-original-width="1440" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBx2OC8AUEHF1CACWxoNe62pSP-IHXbm9gfXX-J14AhY5MU8iKb_Eeh1_Yk1yZtuyZfCfxRs61eqGjLKFTw9Wbm08Ku3JaRfE3qImh-kxdncEzQaGKSIvppF8-3XmxTke70eobI_ZKxlJ5Nkle5S6_r5dmI77Md_Oc9wNrKqAF51zbVsh3qFpaWJ98gw/s320/3831C577-B901-4978-B436-E3573AE00F4E.jpeg" width="256" /></span></a></div><span style="font-family: arial; font-size: medium;"><br /></span><p><span style="font-family: arial; font-size: medium;"><br /></span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">By the morning it was clear we needed help. We needed to get him to a hospice so we could begin palliative care. </span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">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?"</span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">What followed was some very, very frank conversations. </span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">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."</span></p><p><span style="font-family: arial; font-size: medium;">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." </span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">And in that decision I made, we made. We freed Zack, f</span><span style="font-family: arial; font-size: medium;">ree form the pain, the constant medical interventions, the difficulties. Free to finally be at peace. </span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><br /></p>nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0tag:blogger.com,1999:blog-8142407007870086991.post-54711563129624572202022-06-28T02:13:00.005-07:002022-06-30T05:51:36.570-07:00Progressively worsening admissions<p><span style="font-size: medium;">Zack remained reasonably well until around May of 2021 when he was admitted into Warrington Hospital requiring oxygen and antibiotics. </span></p><p><span style="font-size: medium;">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. </span></p><p><span style="font-size: medium;">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, <span face="arial, sans-serif" style="background-color: white; caret-color: rgb(32, 33, 36); color: #202124;">nasopharyngeal</span> suctioning, giving saline nebulisers, colomycin nebulisers and oral antibiotics. </span></p><p><span style="font-size: medium;">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. </span></p><p><span style="font-size: medium;">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. </span></p><p><span style="font-size: medium;">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. </span></p><p><span style="font-size: medium;">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. </span></p><p><span style="font-size: medium;">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. </span></p><p><span style="font-size: medium;">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. </span></p>nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0tag:blogger.com,1999:blog-8142407007870086991.post-31570372702830495702022-06-27T08:12:00.001-07:002022-06-28T01:50:15.543-07:00Let me start from the beginning<p><span style="font-family: arial; font-size: medium;">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? </span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">Let me start from the beginning.....</span></p><p><span style="font-family: arial; font-size: medium;">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.</span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDTIr_nlbUX697KNkUsRmKCrcfdFTRSEexa27g7JqQmyN8ZisHVmtShInSwRrrIrvCDBWRUyBMzfyf_eFONsMPHVyJZ6oJiwtL5GyDS962B2nbT2wkRHA2cEW-ab_MTzmQa4i9km_GMdqkFX5oYPHREV86Fz8i2BW4t7YBbALx5uj9rnuCuTsqfBVuFg/s3088/AB2050D3-8179-4F6D-98A9-7A0EDE47C2C3.heic" style="margin-left: auto; margin-right: auto;"><span style="font-family: arial; font-size: medium;"><img border="0" data-original-height="3088" data-original-width="2316" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDTIr_nlbUX697KNkUsRmKCrcfdFTRSEexa27g7JqQmyN8ZisHVmtShInSwRrrIrvCDBWRUyBMzfyf_eFONsMPHVyJZ6oJiwtL5GyDS962B2nbT2wkRHA2cEW-ab_MTzmQa4i9km_GMdqkFX5oYPHREV86Fz8i2BW4t7YBbALx5uj9rnuCuTsqfBVuFg/s320/AB2050D3-8179-4F6D-98A9-7A0EDE47C2C3.heic" width="240" /></span></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-family: arial; font-size: medium;"><b>In recovery</b></span></td></tr></tbody></table><span style="font-family: arial; font-size: medium;"><br /></span><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;"><br /></span></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxMP1af8kXg2nja5lfUcgCls5fJ7LRBZqYog_8paqXU-6_3mUGGQZpX5nbsKv_-44xC1jEjPtkv-KqFo65ZCaks77Le0vierWb69dxmZ58TdmHoBMKtwyTc7iZns4eZPP_zN87_NtqreJPfVHaHrX8WdftYQJG64jFOqoZ9Sz4Cqgq8cPeapI9DBpI1w/s4032/DE347E21-5432-4A08-9467-ADFDDBC69C3E.heic" style="margin-left: auto; margin-right: auto;"><span style="font-family: arial; font-size: medium;"><b><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxMP1af8kXg2nja5lfUcgCls5fJ7LRBZqYog_8paqXU-6_3mUGGQZpX5nbsKv_-44xC1jEjPtkv-KqFo65ZCaks77Le0vierWb69dxmZ58TdmHoBMKtwyTc7iZns4eZPP_zN87_NtqreJPfVHaHrX8WdftYQJG64jFOqoZ9Sz4Cqgq8cPeapI9DBpI1w/s320/DE347E21-5432-4A08-9467-ADFDDBC69C3E.heic" width="240" /></b></span></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-family: arial; font-size: medium;"><b>Like nothing dramatic had ever happened</b></span></td></tr></tbody></table><span style="font-family: arial; font-size: medium;"><br /></span><p><span style="font-family: arial; font-size: medium;">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. </span></p><p><span style="font-family: arial; font-size: medium;"><br /></span></p><p><span style="font-family: arial; font-size: medium;"><br /></span></p><p><span style="font-family: arial; font-size: medium;"><br /></span></p><p><br /></p>nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0tag:blogger.com,1999:blog-8142407007870086991.post-18344439536365229752022-06-16T06:17:00.001-07:002022-06-16T06:17:15.046-07:00Exposing our grief<p> Hi, this is the hardest and most difficult post I am having to write. </p><p>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.</p><p>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.</p><p>Sadly Zack our wonderful, gorgeous, brave beating heart of our family passed away at Clair House on 3rd April 2022 aged 13 years. </p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRmkJnmIXbTDP3jbAl8KnY1VdMjcj3VqpWSNsVzVE5QcnVz3G3zqr9ph-3E4WDsLvL_kneOVRY-fQtEgzg6GAeZaJL3Vo3Cf36B5okaPlVyxIVNGs7FnVnHVyeTlAWIcCIQpHujFY-3DbRnMNeABO9ASzmMgNNiZ8dLU3bZH3JVQ2quAwz271zvgV_5Q/s2212/AF37470A-8ECB-40D3-BFE2-0C8708A3B4C8_1_201_a.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2212" data-original-width="1656" height="381" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRmkJnmIXbTDP3jbAl8KnY1VdMjcj3VqpWSNsVzVE5QcnVz3G3zqr9ph-3E4WDsLvL_kneOVRY-fQtEgzg6GAeZaJL3Vo3Cf36B5okaPlVyxIVNGs7FnVnHVyeTlAWIcCIQpHujFY-3DbRnMNeABO9ASzmMgNNiZ8dLU3bZH3JVQ2quAwz271zvgV_5Q/w286-h381/AF37470A-8ECB-40D3-BFE2-0C8708A3B4C8_1_201_a.jpeg" width="286" /></a></div><br /><p><br /></p><p>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.</p><p>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.</p><p>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.</p><p>The following is in memory of Zack, my love, my heart, my forever.</p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGbAn8xvHjdtD2gu9dCGu-T4CPRSOFmNbYkbjJrGlmPYVlHWm7bYg-kPG3dbjaFnD2dR9EgLBurMcWyKKVV-eJyCd3XVvA4t_4-3czeoOYhUSXlXdDF8SEHJ0VRxn47I0xqHIBoExK5v52cnahuWqFo6TtemEIgFM-SpzcPrKSX3DYv7lwq_c_OYoBEA/s4032/5E571A17-2837-4B75-B0D4-6F4957C2B45A.heic" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="4032" data-original-width="3024" height="408" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGbAn8xvHjdtD2gu9dCGu-T4CPRSOFmNbYkbjJrGlmPYVlHWm7bYg-kPG3dbjaFnD2dR9EgLBurMcWyKKVV-eJyCd3XVvA4t_4-3czeoOYhUSXlXdDF8SEHJ0VRxn47I0xqHIBoExK5v52cnahuWqFo6TtemEIgFM-SpzcPrKSX3DYv7lwq_c_OYoBEA/w306-h408/5E571A17-2837-4B75-B0D4-6F4957C2B45A.heic" width="306" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Our last photograph of the legend</td></tr></tbody></table><p><br /></p><p><br /></p><p><br /></p>nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0tag:blogger.com,1999:blog-8142407007870086991.post-28655664422929251392018-08-12T13:31:00.003-07:002018-08-12T13:31:39.972-07:00Hey, Haigh Woodland Park<span style="font-family: "verdana" , sans-serif;">We are in the middle of the summer break. </span><br />
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<span style="font-family: "verdana" , sans-serif;">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).</span><br />
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<span style="font-family: "verdana" , sans-serif;">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. </span><br />
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<span style="font-family: "verdana" , sans-serif;">We went off for a visit to <a href="http://www.haighwoodlandpark.co.uk/" target="_blank">Haigh Woodland Park </a>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. </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Just doing the tree climb thang</td></tr>
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<span style="font-family: "verdana" , sans-serif;">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. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span><span style="font-family: "verdana" , sans-serif;">And here is my issue with Haigh Woodland Park.</span><span style="font-family: "verdana" , sans-serif;"> All this money spent on fantastic equipment and nothing, not one piece of equipment that my son can use. </span><br />
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<span style="font-family: "verdana" , sans-serif;">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.</span><br />
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<span style="font-family: "verdana" , sans-serif;"><a href="https://www.visitliverpool.com/things-to-do/victoria-park-p16147" target="_blank">Victoria Park</a> 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).</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk5gGEK5Vgq4WRZLbshSVZRp0vWaQvrwNfBuk9vpXijHLFDgtjePRv8w4VFMSLZR2kmwAbh_f7vJfN0t2UzRfhuYM6JHf6jtwMdy9iGrR1_iDzXPbutfQJQTUYK5slpQJGKZ6YapMYSg96/s1600/IMG_0046.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk5gGEK5Vgq4WRZLbshSVZRp0vWaQvrwNfBuk9vpXijHLFDgtjePRv8w4VFMSLZR2kmwAbh_f7vJfN0t2UzRfhuYM6JHf6jtwMdy9iGrR1_iDzXPbutfQJQTUYK5slpQJGKZ6YapMYSg96/s320/IMG_0046.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Inclusive roundabout</td></tr>
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<span style="font-family: "verdana" , sans-serif;">Friends on their travels have told me that <a href="https://www.visitliverpool.com/things-to-do/sefton-park-p90321" target="_blank">Sefton Park</a> has a wheelchair swing. Yes a swing upon which you can plonk a wheelchair. Who'd have thought of that.</span><br />
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<span style="font-family: "verdana" , sans-serif;">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. </span><br />
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<span style="font-family: "verdana" , sans-serif;">We still had a nice day and Scarlett ended up with a blue slush........she'll look like <span style="background-color: white;"><span style="color: #222222;"><span style="line-height: 19px;">Violet Beauregarde by the end of the holidays.</span></span></span></span><br />
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<br />nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0tag:blogger.com,1999:blog-8142407007870086991.post-15806248994562351362017-04-16T08:53:00.001-07:002017-04-16T08:53:26.513-07:00What a nasty man<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana, sans-serif;">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. </span><br />
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<span style="font-family: Verdana, sans-serif;">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. </span><br />
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<span style="font-family: Verdana, sans-serif;">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.</span><br />
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<span style="font-family: Verdana, sans-serif;">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. </span><br />
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<span style="font-family: Verdana, sans-serif;">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. </span><br />
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<span style="font-family: Verdana, sans-serif;">As it turned out Zack was much happier at base camp than going on a tour of beautiful North Wales. </span><br />
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<span style="font-family: Verdana, sans-serif;">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. </span><br />
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<span style="font-family: Verdana, sans-serif;">Swimming was a daily activity, adventure was a given and falling into a dress rehearsal for a musical was a fortunate event. </span><br />
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<span style="font-family: Verdana, sans-serif;">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. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEb4dTqAOTPO0PJ4v-XAFl28Yl19a-2y8ynUF6N5R1uV2S4xkLBr0ndxIi89ehWJ579nZZX3ea3X-tEjAzGR7BXnZ1Lxon0wKz_WH_VacT1NqYNHn3-M5CAjFfVoKuaZlkfv2Y5rFZgDYp/s1600/mumscazeaster.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEb4dTqAOTPO0PJ4v-XAFl28Yl19a-2y8ynUF6N5R1uV2S4xkLBr0ndxIi89ehWJ579nZZX3ea3X-tEjAzGR7BXnZ1Lxon0wKz_WH_VacT1NqYNHn3-M5CAjFfVoKuaZlkfv2Y5rFZgDYp/s400/mumscazeaster.jpg" width="248" /></a></div>
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<span style="font-family: Verdana, sans-serif;">There was a lot of eating. A lot of eating. But most of all, a lot of laughter. </span><br />
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<span style="font-family: Verdana, sans-serif;">We encountered back to the dark ages disability discrimination from a lady of a certain age in a tatty old shop. </span><br />
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<span style="font-family: Verdana, sans-serif;">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." </span><br />
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<span style="font-family: Verdana, sans-serif;">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.</span><br />
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<span style="font-family: Verdana, sans-serif;">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. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXWRlvL7G4IdQ_lwgzmYa4sAH__TJDX7FQ8nmxXBfKJToDGPuzom87W78Gbw6Gexb0yNZthbcMw5Gii2fK2SfNC2tsGuzXNXv8PnHpa35cXO03RvqhKiLgW58Y78vf9smXMVJa9z6R1gtB/s1600/zackcaravan.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXWRlvL7G4IdQ_lwgzmYa4sAH__TJDX7FQ8nmxXBfKJToDGPuzom87W78Gbw6Gexb0yNZthbcMw5Gii2fK2SfNC2tsGuzXNXv8PnHpa35cXO03RvqhKiLgW58Y78vf9smXMVJa9z6R1gtB/s400/zackcaravan.jpg" width="225" /></a></div>
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<span style="font-family: Verdana, sans-serif;">You can't always get equality, but it's there in between the dark, pushing through. </span><br />
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<span style="font-family: Verdana, sans-serif;">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. </span>nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com1tag:blogger.com,1999:blog-8142407007870086991.post-42587117896326531892017-03-06T12:43:00.002-08:002017-03-06T12:56:34.324-08:00Farted on with glitter<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">Zack and his pals (Harry and Cameron) went to <a href="https://www.thelowry.com/" target="_blank">The Lowry</a> on Saturday to watch <a href="http://frozenlighttheatre.com/current-production/" target="_blank">Home</a>. 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.</span><br />
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<span style="font-family: "verdana" , sans-serif;">We had an absolute ball. What a fully interactive, immersive, engaging performance from </span><a href="http://frozenlighttheatre.com/" style="font-family: Verdana, sans-serif;" target="_blank">Frozen Light Theatre</a><span style="font-family: "verdana" , sans-serif;">. 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.</span><br />
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<span style="font-family: "verdana" , sans-serif;">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. </span><br />
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<span style="font-family: "verdana" , sans-serif;">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.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIRfcu9uKjlET2fj3R2zJjH-CP-SD5r8vUlFfCo7kFRj-IfwVQ1NEUvOgVdNa7FRpIhSxf-ySHi2uAb6dxz4L8t8ebrG1CmMm7ZdDfk865Vv5diA4UG3TW94GeUvpJQy2R9valq7JWd4ba/s1600/home3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIRfcu9uKjlET2fj3R2zJjH-CP-SD5r8vUlFfCo7kFRj-IfwVQ1NEUvOgVdNa7FRpIhSxf-ySHi2uAb6dxz4L8t8ebrG1CmMm7ZdDfk865Vv5diA4UG3TW94GeUvpJQy2R9valq7JWd4ba/s400/home3.jpg" width="400" /></a></div>
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<span style="font-family: "verdana" , sans-serif;">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.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi05NVOek3yVKgVpO4HIrHbd-qFNc_Jjha7FEcbz_3t-K31pGPhYpTi2-rDuNvdC5W0IyCuO3FW_ezhA5UCpGeK4z9S3rEppwMe4nvIik3hmUrHvpjGyIirBE4R3bSg2abTjMnRqoA5cdW8/s1600/zackhome1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi05NVOek3yVKgVpO4HIrHbd-qFNc_Jjha7FEcbz_3t-K31pGPhYpTi2-rDuNvdC5W0IyCuO3FW_ezhA5UCpGeK4z9S3rEppwMe4nvIik3hmUrHvpjGyIirBE4R3bSg2abTjMnRqoA5cdW8/s400/zackhome1.jpg" width="400" /></a></div>
<span style="font-family: "verdana" , sans-serif;">There were bubbles, more smells, flavoured water sprayed on tongues, some weird contraption that made massive long foam bubbles. Zack loved it all. </span><br />
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<span style="font-family: "verdana" , sans-serif;">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. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitrasEXpJRJ3_2-SZSmQ0MysEqM_p2YxN-O1artwIbZYD0FmHnDQYrXjG8vokRfN9gT4VVmEcavszzCL0MNj_INBOQol3lH3zUb_1K_1ABC6XaRZah1mY-Pp0iqWzx7-hha2Z2P-XoZDnT/s1600/zackhome2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitrasEXpJRJ3_2-SZSmQ0MysEqM_p2YxN-O1artwIbZYD0FmHnDQYrXjG8vokRfN9gT4VVmEcavszzCL0MNj_INBOQol3lH3zUb_1K_1ABC6XaRZah1mY-Pp0iqWzx7-hha2Z2P-XoZDnT/s400/zackhome2.jpg" width="300" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikLfQy-6s39cSuvrHBks_ER51bV_NBI6TpXKhCjQ45wjFG1Bin7heX97HhIk4j4iLUERbyiQ-_0GXAVbIYUKVQdozMpPK6jzGVXitESISzNFRAenXxktzzwszXZqRg4ADecd8NnGE3x3hu/s1600/home6.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikLfQy-6s39cSuvrHBks_ER51bV_NBI6TpXKhCjQ45wjFG1Bin7heX97HhIk4j4iLUERbyiQ-_0GXAVbIYUKVQdozMpPK6jzGVXitESISzNFRAenXxktzzwszXZqRg4ADecd8NnGE3x3hu/s400/home6.jpg" width="220" /></a></div>
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<span style="font-family: "verdana" , sans-serif;">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. </span><br />
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<span style="font-family: "verdana" , sans-serif;">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. </span><br />
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<span style="font-family: "verdana" , sans-serif;">To me they are leaders in their field. Massive standing ovation. Loved it.</span><br />
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<span style="font-family: "verdana" , sans-serif;">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. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Wake up theatre world, take note, we need more of this. </span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: x-small;"><i>*Special thank you to Yasha and Sarah for letting me steal their photographs.</i></span>nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0tag:blogger.com,1999:blog-8142407007870086991.post-6895077427157607422017-03-03T02:32:00.004-08:002017-03-03T02:33:23.607-08:00You ever searched for a foxes tail on ebay?<span style="font-family: "verdana" , sans-serif;">Yesterday was World Book Day.</span><br />
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<span style="font-family: "verdana" , sans-serif;">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.</span><br />
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<span style="font-family: "verdana" , sans-serif;">I know this because supermarkets now stock up on character costumes at least eight weeks prior to the event.</span><br />
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<span style="font-family: "verdana" , sans-serif;">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.</span><br />
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<span style="font-family: "verdana" , sans-serif;">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. </span><br />
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<span style="font-family: "verdana" , sans-serif;">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). </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnmO-tkFI8UhLQHtDb4tdOnH9SVScTi3anaLrZ0IggmrVAcDPCqEVoGkp8Ob3v-NJ_vIdYg6mfIjjYRCtCC7wkCmfu7CxnWpfNdCibpZm9KiYQZExTjdz10h_EzSgSyBFdJhJ6VpUO-HMc/s1600/IMG_0014.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="303" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnmO-tkFI8UhLQHtDb4tdOnH9SVScTi3anaLrZ0IggmrVAcDPCqEVoGkp8Ob3v-NJ_vIdYg6mfIjjYRCtCC7wkCmfu7CxnWpfNdCibpZm9KiYQZExTjdz10h_EzSgSyBFdJhJ6VpUO-HMc/s320/IMG_0014.jpg" width="320" /></a></div>
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<span style="font-family: "verdana" , sans-serif;">That Mrs Fox though! I tried to suggest she went as Veruca Salt, easy costume, golden egg, done. She certainly has the temperament nailed. </span><br />
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<span style="font-family: "verdana" , sans-serif;">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!</span><br />
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<span style="font-family: "verdana" , sans-serif;">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 <a href="http://www.ebay.co.uk/itm/Brand-New-Fluffy-faux-fur-fox-cat-cosplay-tail-with-metal-plug-s-m-l-UK-NEW-/262866205594" target="_blank">foxes tail</a>.......(clicked on the link, because I'm not putting that picture on here!)</span><br />
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<span style="font-family: "verdana" , sans-serif;">Huh.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Yep.</span></div>
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<span style="font-family: "verdana" , sans-serif;">Look if that's what people are into, well, fine. And I'm not usually surprised by things but wow. Okay.</span></div>
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<span style="font-family: "verdana" , sans-serif;">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. </span></div>
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<span style="font-family: "verdana" , sans-serif;">So yes, World Book Day, a great idea. A pain in the arse for me. (Sorry I couldn't help that.)</span></div>
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<br />nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0tag:blogger.com,1999:blog-8142407007870086991.post-49952819467459936462017-03-03T01:48:00.000-08:002017-03-03T01:48:05.541-08:00Say that without taking a breath<span style="font-family: Verdana, sans-serif;"><br /></span>
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<span style="font-family: Verdana, sans-serif;">Say cheeeeeesssse. Zack's been to the dentist. </span><br />
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<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">We only visit the dentist at Alder Hey now. We used to go to the main dental place in Warrington and they were good but lets be honest, how many kids are they going to see like Zack?</span><br />
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<span style="font-family: Verdana, sans-serif;">Zack's teeth have never been, normal. But then again, Zack isn't text book is he? He got all his baby teeth except one top one that never appeared, probably couldn't be arsed to make an appearance. We had an X ray done of the missing tooth and it turns out there is an adult one there waiting to hatch.</span><br />
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<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Is hatch the right term for teeth coming through? </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Anyway, Zack, like most things with him takes his time with teeth. His gums are very thick and swollen. Dentists seem to think that this is due to the epilepsy medicine that he takes whereas the neurologist thinks it's nothing to do with that. I just think his teeth are lazy like him. </span><br />
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<span style="font-family: Verdana, sans-serif;">He's lost a few of his baby teeth and grown some quite admirable front teeth. The bottom two seem to be at war with each other, one coming up straight the other twisted.</span><br />
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<span style="font-family: Verdana, sans-serif;">As you can imagine every six months when we visit the dentist I regurgitate a one minute monologue that goes along these lines.....</span><br />
<span style="font-family: Verdana, sans-serif;">"Well, he's lost another two, but I'm worried that there isn't any coming through, and his gums seem really thick. And then there's that twisted one at the bottom, I mean what about the gums, how will the teeth come through. Are this ridges at the bottom normal.....is it normal?"</span><br />
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<span style="font-family: Verdana, sans-serif;">There say that without taking a breath.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">As always the dentist is very patient with me. In fact, he's a really good dentist. He should have his own children's tv show. Like that good looking doctor on CBeebies, the one that tells those weird puppets about tummy bugs.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">When I went this time after my outburst, I looked round at Zack to see he had turned to face me and I swear to God the look on his face was one of, Jesus mum, will you relax. </span><br />
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<span style="font-family: Verdana, sans-serif;">Turns out I still don't need to worry, everything is as it should be and all quite normal.</span><br />
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<span style="color: red; font-family: Verdana, sans-serif; font-size: x-large;">NORMAL</span></div>
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<span style="font-family: Verdana, sans-serif;">We don't get that very often. And when that word is used in a sentence with Zack it kind of throws you a bit. But yes, all the teeth are coming in the right order, he may be slightly behind by a year (but what's new there), all good, all fine.</span></div>
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<span style="font-family: Verdana, sans-serif;">Off we left, happy that all was good in teeth world. </span></div>
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<span style="font-family: Verdana, sans-serif;">We didn't get a sticker though.....we'd like a sticker. Do they still do stickers saying I've been a brave girl?</span></div>
nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0tag:blogger.com,1999:blog-8142407007870086991.post-11359370132609585382017-02-26T14:57:00.001-08:002017-02-26T14:57:21.591-08:00Thank you Mumsnet<a href="https://www.mumsnet.com/" target="_blank"><span style="font-family: Verdana, sans-serif;">Mumsnet. </span></a><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Do you remember that post about the table with the special items? Yeah? Well that's what I think when I hear any mention of this site. (Look it up, I'm not going to explain myself).</span><br />
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<span style="font-family: Verdana, sans-serif;">I know it's power. The information, the forums, the go-to site for statistics for any given parenting slot on This Morning. Despite, all this I am not an avid visitor. I occasionally dip in when something on social media catches my eye. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Such as last week a Facebook post popped up about an article in the Guardian featuring <a href="https://www.mumsnet.com/" target="_blank">Mumsnet</a> and their <a href="https://www.mumsnet.com/campaigns/this-is-my-child" target="_blank">This Is My Child Campaign</a>. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I think it's only fair I give them some kudos for doing this campaign. A great awe-inspiring mish-mash of information about parenting a child with special needs. A fantastic resource of other parents, busting myths, offering support, providing guidance.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Christ, if <a href="https://www.mumsnet.com/" target="_blank">Mumsnet</a> needed a cheer squad right now I'd be with them, spanx on, shaking my pom poms. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">When Zack was born the one thing I felt so strongly was a sense of disconnect from the norm. A feeling of isolation. Who could I talk to? What could I read? Who would listen to me? What the hell am I going to do? </span><br />
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<span style="font-family: Verdana, sans-serif;">I found the odd blog about people in similar situations which helped somewhat. Then I found the wonderful people at Special Kids in the UK. Then life happened and we adapted. But I never forgot, nor will I ever forget those very dark first years and I don't want someone else in our situation to feel as alone as I did. </span><br />
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<span style="font-family: Verdana, sans-serif;">And here I am eight years later, still harping on, hoping that those kind readers can put up with the moaning. And those readers who want help find some solace or inspiration or some form of oooh that's a good idea. </span><br />
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<span style="font-family: Verdana, sans-serif;">So, yes, <a href="https://www.mumsnet.com/" target="_blank">Mumsnet</a>, today you rock. Well done you. </span><br />
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<span style="font-family: Verdana, sans-serif;">And thanks.</span><br />
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nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0tag:blogger.com,1999:blog-8142407007870086991.post-16717630378083393972017-02-26T14:25:00.005-08:002017-02-26T14:25:45.313-08:00Used to run<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">😒😒😒😒😒😒😒<span style="color: red;"><b>~~~~Moan Alert~~~~</b></span>😒😒😒😒😒😒😒😠</span><br />
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<span style="font-family: Verdana, sans-serif;">Half term, what to do, what to do?</span><br />
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<span style="font-family: Verdana, sans-serif;">Well, it's done now, suggestions aren't needed. Filling endless days of school holidays is very easy for the smaller child but for Zack and his requirements it can be quite difficult.</span><br />
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<span style="font-family: Verdana, sans-serif;">We are limited on places to go that we haven't already done to death and limited by what's on offer within our local area.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Once upon a time Warrington Council created a brand new, all singing, all dancing facility especially for children with disabilities, <a href="http://www.warringtonsensorycentre.org/" target="_blank">The Warrington Play and Sensory Centre.</a></span><br />
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<span style="font-family: Verdana, sans-serif;">In fact so delighted where we with a place to go with Zack that we even did a small <a href="http://www.warringtonsensorycentre.org/case-studies/linzi-price-and-son-zack/" target="_blank">testimonial</a> for them.</span><br />
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<span style="font-family: Verdana, sans-serif;">Oh, and they used to run a lovely group called Dolphins in the holidays that myself and some other mummies and daddies of kids with complex needs would go along to. But re-read that sentence and what stands out? The words 'used to run'.</span><br />
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<span style="font-family: Verdana, sans-serif;">Because sadly that service got cut and the reason, funding, or lack of it. I had not been back to the sensory centre for a while and this weekend we visited as a family.</span><br />
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<span style="font-family: Verdana, sans-serif;">I couldn't believe how run down it looked. In the lovely little dark room they used to have projectors for the large film screen and one for the floor. Not there. Broken.</span><br />
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<span style="font-family: Verdana, sans-serif;">In the sensory light room, they used to have a switch box to activate the bubble lamp. Not there, broken.</span><br />
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<span style="font-family: Verdana, sans-serif;">To be honest, I would have had a better time taking him to a normal play centre. I asked an assistant why the box wasn't available, she explained it was broken and they had no money to fix it as their funds had been cut by the council.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">I paid £7.50 to take two children in for an hour, I understand money is limited but if I am paying to use a place then I expect equipment to be working.</span><br />
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<span style="font-family: Verdana, sans-serif;">Secondly, I know councils are having budgets slashed and we see flyers to save libraries and other valuable services. But why is it that those in our society, the most vulnerable and the most at need have their programmes cut first?</span><br />
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<span style="font-family: Verdana, sans-serif;">My son with all his complex needs like his other pals have no access to leisure or social activities.</span><br />
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<span style="font-family: Verdana, sans-serif;">No, no, wait. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">There is a council bought in service called Playability that is for children with disabilities. </span><br />
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<span style="font-family: Verdana, sans-serif;">Great, we can go there. </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">No, actually you can't.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">You see my son is PEG fed and he isn't allowed to take a one to one support worker in with him. But someone can come in and feed him, then leave him again without a one to one personal assistant, which he needs in order to access the world. This equals, no access to playability.</span><br />
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<span style="font-family: Verdana, sans-serif;">He no longer can meet his pals at the Dolphin sessions.</span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">And now we will no longer be going to Warrington Play and Sensory Centre because despite us paying to get in it has equipment that is broken which will remain out of order until someone pays to get it fixed.</span><br />
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<span style="font-family: Verdana, sans-serif;">Warrington Council need to get a handle of a facility that has the potential to be really, really good. Instead they are choosing to let slip a valuable service to families and children with special needs.</span><br />
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<span style="font-family: Verdana, sans-serif;">What do I want to see? More opportunity for all children with disabilities, places to go for all and services that can accommodate even those with the most complex needs.</span><br />
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<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">Guess I'm dreaming. </span><br />
<br />nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0tag:blogger.com,1999:blog-8142407007870086991.post-9745018213298499762017-02-19T09:21:00.001-08:002017-02-19T09:21:40.796-08:00Can only accommodate six wheelchair users<div>
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<span style="font-family: Verdana, sans-serif;">Here's a pop quiz. </span><br />
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<span style="font-family: Verdana, sans-serif;">When does a theatre show for people with PMLD (Profound and Multiple Learning Difficulties) not allow people with PMLD to come along? </span><br />
<span style="font-family: Verdana, sans-serif;"><br /></span>
<span style="font-family: Verdana, sans-serif;">When it gets it's promotion and booking system completely and utterly ballsed up, that's when!</span></div>
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
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<span style="font-family: Verdana, sans-serif;">I don't get to take Zack to anything special that's suitable just for him and his needs very often. Don't get me wrong, he still joins in with all the family fun and activities but the majority of it isn't very suited to his needs. </span></div>
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
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<span style="font-family: Verdana, sans-serif;">When I saw a little tweet about a show called Home specifically targeted at an audience for people with PMLD I had to get tickets.</span></div>
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<span style="font-family: Verdana, sans-serif;">The touring theatre company had shows running at the <a href="http://www.thelowry.com/events/theatre-shows" target="_blank">Lowry</a> so myself and a couple of Zack's friends agreed we would go to the Saturday showing in March as I was advised that this had the most seats available to accommodate our numbers.</span></div>
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<span style="font-family: Verdana, sans-serif;">All booked, all sorted, and three happy mummy's looking forward to taking their children to a special show. </span></div>
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<span style="font-family: Verdana, sans-serif;"><br /></span></div>
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<span style="font-family: Verdana, sans-serif;">Four days later I get an email from the Lowry Theatre to contact them as a matter of urgency. It turns out that whoever booked our tickets had over-sold the show and in particular over-sold the seat number to those audience members in wheelchairs.</span></div>
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<span style="font-family: Verdana, sans-serif;">Oh yes. Despite my statement to the booking lady asking if there is enough room for three wheelchair users and she telling me yes, it turns out each performance can only accommodate six wheelchair uses.</span></div>
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<span style="font-family: Verdana, sans-serif;">Again......</span></div>
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<span style="font-family: Verdana, sans-serif;">A show that if you read the advertising blurb states it is specifically for people with PMLD but can only accommodate six wheelchair users at a time.</span></div>
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<span style="font-family: Verdana, sans-serif;">So lets get this straight our children are now not being allowed to go to a show catering for their needs because of their disabilities. Oh dear Lord.</span></div>
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<span style="font-family: Verdana, sans-serif;">No, no, no, no, no. Needless to say I strongly stated how disappointed I was and how it was unacceptable and all the rest of it. Twenty minutes later and another phone call the production company have very kindly managed to accommodate us, adapting the show so that we can come along with our wheelchairs.</span></div>
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<span style="font-family: Verdana, sans-serif;">Oh, thank you. That's very good of you and we are grateful, miffed off, but grateful. I'm hoping after all the fuss I caused that Zack doesn't decide it's not for him and kicks off big time during show time.</span></div>
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<span style="font-family: Verdana, sans-serif;">I'll let you know how it goes.</span></div>
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nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0tag:blogger.com,1999:blog-8142407007870086991.post-74464607241602210842017-02-13T05:08:00.000-08:002017-02-13T05:08:06.909-08:00That cold, hard beginning<br />
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<span style="font-family: "verdana" , sans-serif;">Here I am again. Quicker for you as we have been blog absent for almost a year but The Pants turns eight today. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Eight amazing years of having the divine fortune to have this boy as my son. </span><br />
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<span style="font-family: "verdana" , sans-serif;">And we are very fortunate. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Even after eight years have past in the blink of an eye I still remember his birth as though it were yesterday. But that cold, hard beginning has lead to peace and happiness. That's not to say it's always glorious, no, it is very tough and relentless but it is etched with utter pure love. </span><br />
<span style="font-family: "verdana" , sans-serif;"><br /></span>
<span style="font-family: "verdana" , sans-serif;">And so I am faced again with balloons and presents and cake for a son who is eight. A son who is eight and has never spoken one comprehensible word to me, or ran to me, or held me, or kissed me. But strangely with him I don't need all of that, his eight years represents fight and strength and presence. Look at him and you feel peace. Isn't that what we all need?</span><br />
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<span style="font-family: "verdana" , sans-serif;">Happy Birthday Handsome</span></div>
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<span style="font-family: "verdana" , sans-serif;"><br /></span>nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0tag:blogger.com,1999:blog-8142407007870086991.post-9236425986488569242017-02-09T14:12:00.000-08:002017-02-09T14:12:11.018-08:00The two awards were poles apart<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "verdana" , sans-serif;">The tale of two very different awards.</span></div>
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<span style="font-family: "verdana" , sans-serif;">Once upon a time there was a little girl with beautiful deep blue eyes and golden hair who loved to dance. </span><br />
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<span style="font-family: "verdana" , sans-serif;">She practiced once a week until her teacher said you are ready now to take your first exam. The little girl was nervous and unsure but she tried her best. </span><br />
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<span style="font-family: "verdana" , sans-serif;">And after a long wait she received her results, 87%. A distinction. She was overjoyed.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Meanwhile a little boy with beautiful green brown eyes and a mop of dark curly hair, rocked up home one day on the taxi. </span><br />
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<span style="font-family: "verdana" , sans-serif;">He had his usual look of disdain on his face, when asked how his day was the look he gave was meh.</span><br />
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<span style="font-family: "verdana" , sans-serif;">And so began the routine of unclipping him from his chair for the little boy could not walk, nor could he talk. </span><br />
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<span style="font-family: "verdana" , sans-serif;">After he was settled on the settee, his mummy set about checking his school book to see what message was being relayed back to her from his teacher. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Out of his yellow school book fell a blue and red certificate. His mummy picked up the certificate and grinned, grinning and marching over to her handsome son.</span><br />
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<span style="font-family: "verdana" , sans-serif;">"What's this?" she wafted the card in from of his face. "What's this?" </span><br />
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<span style="font-family: "verdana" , sans-serif;">The boy looked at her, stuck his tongue forwarded smiled and made his duuuuuggggghhhh sound. As I said earlier in the story, the boy cannot talk so I will translate.</span><br />
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<span style="font-family: "verdana" , sans-serif;">"That? Oh that. Yeah that's just something I got awarded today from school. Just, you know, a headteachers award for good head holding and sitting up."</span><br />
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<span style="font-family: "verdana" , sans-serif;">His mummy looked at him, as proud as she had looked at her daughter. He had done something amazing and it had been recognised. And whilst the two awards were poles apart they both had meaning. Both accomplishments had taken practice, practice and more practice. Perfecting techniques, training, and trying very hard.</span><br />
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<span style="font-family: "verdana" , sans-serif;">What comes naturally to the dancer, what comes naturally to us all. To hold our head, to sit independently, is a daily grind for the boy. But he is getting better and better at it. So yes, his award too is pretty special.</span><br />
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<span style="font-family: "verdana" , sans-serif;">His mummy ruffled his head, kissed him and told him how amazingly brilliant he was. Then a little a head popped up from behind the couch, leaned over to the boy and said:</span><br />
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<span style="font-family: "verdana" , sans-serif;">"I got a distinction in my ballet exam you know. 87%. Whoohooo."</span><br />
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<span style="font-family: "verdana" , sans-serif;">Yes you did little girl. Yes you did. You both deserve a very big whoohoo.</span><br />
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nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com1tag:blogger.com,1999:blog-8142407007870086991.post-45194763440760930322017-01-25T06:51:00.002-08:002017-01-25T06:51:58.816-08:00100 little bits to this toy <span style="font-family: Verdana, sans-serif;">What to do, what to do. </span><br />
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<span style="font-family: Verdana, sans-serif;">Birthdays, they are getting harder. </span><br />
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<span style="font-family: Verdana, sans-serif;">What do you get a little boy with cerebral palsy now that he is almost eight years old? It's not like I can pop to the toy shop and pick up the latest must have or a spot of lego. No, it takes a lot of thinking. </span><br />
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<span style="font-family: Verdana, sans-serif;">The main toy/present buying requirements fall into several tick boxes </span><br />
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<span style="font-family: Verdana, sans-serif;">1. is it noisy</span><br />
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<span style="font-family: Verdana, sans-serif;">2. does it light up</span><br />
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<span style="font-family: Verdana, sans-serif;">3. does it vibrate</span><br />
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<span style="font-family: Verdana, sans-serif;">4. is it something he can put his hands into. </span><br />
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<span style="font-family: Verdana, sans-serif;">I don't think these things when buying for Scarlett, I just think are there 100 little bits to this toy that are going to end up all over the floor and stuck in the hoover (that usually equates to nope not buying that). </span><br />
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<span style="font-family: Verdana, sans-serif;">Talking of small bits I almost bought both of them that new toy called<a href="http://www.tesco.com/direct/bunchems-on-the-go-easel/478-5816.prd?skuId=478-5816&pageLevel=sku&sc_cmp=ppc_sh-_-sh-_-tesco-_-478-5816&gclid=CNGA9pHD3dECFUeeGwodEuAIoA&gclsrc=aw.ds&source=others" target="_blank"> Bunchems</a>. Looks really good. Little sticky ball things that you can shape into all sorts of creations. Oooooh yes, both kids would like that, Zack especially as it's all feely sensory kind of stuff. </span><br />
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<span style="font-family: Verdana, sans-serif;">I thought I was on a winner until I saw this warning.......</span><br />
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<span style="font-family: Verdana, sans-serif;">Yep. That is the picture of some little child who got a raft of these things stuck in her hair. Given that 1. Scarlett continuously has her long hair flowing free and 2. Zack has the most incredible mop of curly hair on the planet this could only lead to disaster.</span></div>
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<span style="font-family: Verdana, sans-serif;">I am still tempted though.....actually, no. There are youtube videos of instructions in how to remove these things from hair.</span></div>
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<span style="font-family: Verdana, sans-serif;">Well, back to the drawing board. So far we have figured Zack likes Star Wars and Iron Man. Cue new Storm Trooper that makes sounds and noises whenever you move him and a Noctobat. I also have plans to purchase a bell ringing set and triangle. See above checklist.....noise.</span></div>
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<span style="font-family: Verdana, sans-serif;">You see it is hard especially when he can't say mum could I have a new iPhone instead of that crap bat thing you've got me. So I carry on second guessing and believing that what we buy him ticks the sensory boxes and makes the birthday boy happy. Failing all of the above I know a cuddle for about two hours would make him just as happy so who is the fool.</span></div>
<br />nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0tag:blogger.com,1999:blog-8142407007870086991.post-40845663090261087932017-01-20T04:28:00.000-08:002017-01-20T04:28:00.656-08:00Well hellooooo thereGuess who's back.......<br />
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<a href="https://www.flickr.com/gp/146974582@N04/1m86gE" target="_blank">https://www.flickr.com/gp/146974582@N04/1m86gE</a>nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0tag:blogger.com,1999:blog-8142407007870086991.post-41294355979606317992016-02-12T14:49:00.000-08:002016-02-12T14:49:41.930-08:00Happy 7th Birthday Beloved<span style="font-family: "verdana" , sans-serif;">I am sat in the lounge looking at a pile of presents, balloons and banners with seven written on them. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Seven.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Seven years have gone by and I cannot fathom how fast that has happened. Nor can I understand the deep love I feel for a little boy who has never uttered one word to me. Nor ever hugged or kissed me. </span><br />
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<span style="font-family: "verdana" , sans-serif;">How can I feel such a profound connection? It goes to prove that in order to love someone deeply you don't need words it is profound. More significant than what can be shared or felt from one person to another.</span><br />
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<span style="font-family: "verdana" , sans-serif;">I only have to look into his eyes and he only has to look into mine and smile and I know. I know that he has been my most significant catalyst for change and the most significant event in my life. </span><br />
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<span style="font-family: "verdana" , sans-serif;">He is seven and he is moving forward, never backwards. Always progressing at his own pace and in his own time. In the past two years he has altered and is more engaged and aware than previous years. I am very proud of him, I am in awe of him and I am blessed to have him in my life. </span><br />
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<span style="font-family: "verdana" , sans-serif;">Happy birthday Zack. My wonderful son. My boy. My love.</span><br />
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<br />nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com1tag:blogger.com,1999:blog-8142407007870086991.post-55614608155397227402016-01-20T04:40:00.003-08:002016-01-20T04:40:51.144-08:00The dying chair<span style="font-family: Verdana, sans-serif;">I should have mentioned Zack's got some new legs. Not actual legs, he's still got his own, they're getting quite chunky. By legs, I mean wheels.</span><br />
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<span style="font-family: Verdana, sans-serif;">We said goodbye to his old wheelchair. Old faithful. The one that is featured in so many photographs on this blog. It had been everywhere with us, days out, holidays, it even went abroad. Then one day, quite dramatically, it just gave up, in the middle of Debenhams, it quit.</span><br />
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<span style="font-family: Verdana, sans-serif;">As I casually strolled towards the lift with one eye on a four year old looking for toys, I heard shrieks from behind, followed by Dan shouting my name, which could only mean one thing, panic, or man drama.</span><br />
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<span style="font-family: Verdana, sans-serif;">It was panic, I turned to see the wheelchair collapsing in half with Zack still sat in it and Dan trying his best to keep it open. I should also mention that there was a store assistant stocking shelves who did nothing to help, thank you helpful Debenham's staff.</span><br />
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<span style="font-family: Verdana, sans-serif;">We got Zack out and folded the dying chair in half carrying it back to the car two heavy weights, one in need of new legs and one with no hope. (The wheelchair, had no hope, the wheelchair).</span><br />
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<span style="font-family: Verdana, sans-serif;">Fortunately at the time we had been testing out this little beauty over the summer.</span><br />
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<a href="http://www.chunc.com/products/chunc-recline-and-tilt.html"><span style="font-family: Verdana, sans-serif;">http://www.chunc.com/products/chunc-recline-and-tilt.html</span></a><br />
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<span style="font-family: Verdana, sans-serif;">I can honestly say it is one of the best wheelchairs Zack has ever used. We have always had issues with Zack being able to maintain staying in a wheelchair for long periods but with the <a href="http://www.chunc.com/products/chunc-recline-and-tilt.html" target="_blank">Chunc</a> he is very, very comfortable. One day he even managed to sit in his chair for over three hours, unheard of in Zack world.</span><br />
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<span style="font-family: Verdana, sans-serif;">When we got our new chunk, there were a few teething problems with the set up, it needed a few adjustments and tweaks. And this is where the company really do come into a league of their own. Nothing was too much trouble. There was no long waiting period, everything was dealt with efficiently and quickly. You were looked after and you truly do feel like they want to get this right for you because it is too important to not get right. They want you to be completely happy with the <a href="http://www.chunc.com/products/chunc-recline-and-tilt.html" target="_blank">Chunc</a>.</span><br />
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<span style="font-family: Verdana, sans-serif;">After it been tweaked and adjusted, Zack was good to go, and we haven't looked back. Out of all of our equipment this is one of the most important pieces. And Zack's new legs are looking the business. Thank you Chunc.</span>nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com1tag:blogger.com,1999:blog-8142407007870086991.post-7963838810074535412015-12-30T06:16:00.002-08:002015-12-30T06:16:56.831-08:00Now famous smile<span style="font-family: Verdana, sans-serif;">My boy turns 7 in February. Seven years. Not a day goes by when I don't think about our alternative life. The one where he is 'normal', the one where he gets to open his presents like his sister, or ride his bike, or play, or run, or eat. If I dwell too long it becomes overwhelming, I shut it away in the box marked never to be opened and continue with our ordinary. </span><br />
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<span style="font-family: Verdana, sans-serif;">The one where Zack is incredible. The one where I have to fight and argue and speak for him every day. The one in which I recognise every single tiny milestone as a miracle. </span><br />
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<span style="font-family: Verdana, sans-serif;">But the other day I was reminded of how far he has come when his sister came out of his room carrying the first toy that made him laugh. A little rattle that claps together when you shake it. I still remember that day as clear as anything, he was only 10 months old and hadn't laughed at all, it took him months before we got his now famous smile. That day he'd had an EEG done (the first of many) and the nurse gave him the toy to play with I shook it and he laughed. That was one of the best days of my life. My son was not lost, he was very much present.</span><br />
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<span style="font-family: Verdana, sans-serif;">Now seven years later I was a fool to think he would never accomplish much, he has achieved greatness and continues to show me what he can do despite the severity of his disabilities. </span><br />
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<span style="font-family: Verdana, sans-serif;">That laugh, that beautiful laugh, that can turn into extreme fits of giggles is his greatest gift. </span><br />
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<span style="font-family: Verdana, sans-serif;">And now, now, thanks to more regular therapy he sits better, holds his head for longer. He is learning to use his eye gaze technology working towards some method of communication. He is maturing and growing, he is becoming a cheeky little boy, but is the most loveable being in our house. </span><br />
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<br />nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com1tag:blogger.com,1999:blog-8142407007870086991.post-69950983401853056802015-10-22T13:33:00.001-07:002015-10-22T13:33:15.879-07:00Needed a pit stop<span style="font-family: Verdana, sans-serif;">Farms. Aaaahhhh, the smell, the good old stinky smell of a farm. Can't say it's my favourite stench but something I will put up with on a visit to a local attraction, <a href="http://www.stockleyfarm.co.uk/" target="_blank">Stockley Farm</a>.</span><br />
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<span style="font-family: Verdana, sans-serif;">How much fun can you have on a farm? Well, apparently a full day's worth when you go with us. One pinic packed, one car fully loaded as though I was going camping and we were off to the farm.</span><br />
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<span style="font-family: Verdana, sans-serif;">It started well, drive into a field, plenty of disabled parking. Now, where's the farm, oh yes it's just a short tractor drive away. Tractor? Is this accessible? Why yes it is. The tractor turned up pulling a big metal trailer full of hay bales, don't worry I was told we'll just get the ramp down. This ramp was massive but do you know they got Zack and I up quite safely and off we all bobbed down to the farm. </span><br />
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<span style="font-family: Verdana, sans-serif;">It turns out that there is accessible parking right outside the farm. I pointed this out to the tractor driver who said, "yes, but then you wouldn't have had all the fun of the tractor ride." Well, quite right too. Told you the farm was fun and we had had only just got there. </span><br />
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<span style="font-family: Verdana, sans-serif;">Zack, needed a pit stop so I could give him a drink. Off we went into an indoor area that had big bouncy inflatables, and a smaller play area for toddlers. Scarlett was very happy to disappear into the abyss of inflatable heaven whilst I gave Zack a drink. </span><br />
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<span style="font-family: Verdana, sans-serif;">Then we took a look at some of the farm animals which included a pig who was quite possibly the first one I have ever seen who posed for photos. There were also goats, cows, horses, you get the idea. </span><br />
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<span style="font-family: Verdana, sans-serif;">Throughout the day there were lost of activities going on including meeting rabbits and a pole cat which Zack really liked. We fed baby goats and lambs a favourite activity of Scarletts. We groomed ponies and whilst we were there we were lucky enough to witness a calf that had just been born. Although, I have to say at this point Scarlett was more interested in having a fourth go of the fake cow milking machine!</span><br />
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<span style="font-family: Verdana, sans-serif;">The picnic and outdoor play area was well maintained and lots for children to play on. We even went on the nature walk which was lovely and took us through woods, yes, I powered Zack through the forest.</span><br />
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<span style="font-family: Verdana, sans-serif;">Staff were brilliant and very accommodating, taking their time with all the children and making sure everyone got a turn of whatever activity was taking place.</span><br />
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<span style="font-family: Verdana, sans-serif;">My only and biggest gripe is the toilet facility. I think from memory it was a disabled/baby changing toilet combined. Which basically meant either I put Zack on the floor to change him, errrrmmmm, no, or I do the old wheelchair shuffle change. </span><br />
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<span style="font-family: Verdana, sans-serif;">Such a great place to visit that is accessible for wheelchairs really does need to address the issue of providing suitable changing facilities for those with disabilities. By that I do mean the full changing places toilet, not a bar on the wall to help you get off the toilet. Nope. The full on hoist, changing table experience. Go on Stockley Farm have a think about it.</span><br />
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<span style="font-family: Verdana, sans-serif;">Overall though, it was a very good day out. We shall be visiting again in the future. I'm a lot more accepting of the smell these days. </span><br />
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<br />nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0tag:blogger.com,1999:blog-8142407007870086991.post-34640199135088783072015-09-21T14:43:00.002-07:002015-09-21T14:43:42.382-07:00We liked outside just as much as inside<div class="separator" style="clear: both; text-align: center;">
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<a href="https://www.eureka.org.uk/" target="_blank"><span style="font-family: Verdana, sans-serif;">Eureka! The National Children's Museum, Halifax.</span></a><br />
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<span style="font-family: Verdana, sans-serif;">We love this place. First off, as the label on the tin says it's a children's museum, everything is geared towards the little people. It is a utopia of fun. Imagine walking in to a place and you have your very own lets pretend shop, post office, house, bank, car workshop. Everything is touchy feely, created to inspire play and make-believe. </span><br />
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<span style="font-family: Verdana, sans-serif;">It goes without saying that Scarlett loves this place. For one she doesn't get me nagging at her shouting "no touchy shop, no touchy". It's safe for her to have the freedom to run around, everything is there to explore and investigate. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMgK4KpKA52_A2K6_JN-tuvsxXw_09-qqMH-uihIxtbbdG4XEBZ4lewzQsiNCIryGWMKgbk5OpMnTclnBIQ3VoUMab17kVT2iWLq4F8O7oxW0RB2_XcA615zi_rIw_c7pVoUxU02KVYHwb/s1600/P7301039.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMgK4KpKA52_A2K6_JN-tuvsxXw_09-qqMH-uihIxtbbdG4XEBZ4lewzQsiNCIryGWMKgbk5OpMnTclnBIQ3VoUMab17kVT2iWLq4F8O7oxW0RB2_XcA615zi_rIw_c7pVoUxU02KVYHwb/s320/P7301039.JPG" width="240" /></a></div>
<span style="font-family: Verdana, sans-serif;">Wait, I'm jumping ahead, let me start before we even get there, with the cost. The cost is very reasonable you can save some time and money by booking online, but what I like best of all is that once you have paid once you can visit throughout the year without having to pay again. Carers also get in for free. </span><br />
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<span style="font-family: Verdana, sans-serif;">There is plenty of parking for blue badge users. Outside has a brilliant giant sandpit, a train carriage that you can go and sit and have your lunch in, and other wonderful dens and places to explore. We liked outside just as much as inside. </span><br />
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<span style="font-family: Verdana, sans-serif;">There are two floors to the museum all are easily accessible. A large giant lift takes you up to the second floor and the wide open spaces make it easy to get around with a wheelchair. </span><br />
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<span style="font-family: Verdana, sans-serif;">As I said on the first floor is a mini real life set up, shops, banks, workshops. There is a sound space an area where children can explore sound and use their imagination to create music, whilst learning the science behind it all.</span><br />
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<span style="font-family: Verdana, sans-serif;">Up on the top floor is a gallery called All about Me. As the name suggests it's an area looking at the human body. There is a pretend dentist with giant teeth, an area where you can hear a baby's heart beat with an ultrasound, a place that explains all about our senses, a giant tongue and nose. It's fabulous. </span><br />
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<span style="font-family: Verdana, sans-serif;">There is a restaurant on the lower ground and whilst it can get busy it is reasonably priced and the food is good. We found that going in just a little before noon can get you a seat easily but on busy days if you leave it later you could be waiting a while. </span><br />
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<span style="font-family: Verdana, sans-serif;">Now lets just get to the really important part, toilets. </span><br />
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<span style="font-family: Verdana, sans-serif;">Toilets are beginning to become a problem for Zack and I. We used to manage by squeezing onto a baby changing table, but those days are gone. The boy has got big and won't fit any more, what's the alternatives? </span><br />
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<span style="font-family: Verdana, sans-serif;">Well, there's hoping he doesn't need changing in the time you are out.</span><br />
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<span style="font-family: Verdana, sans-serif;">There's trying to change him on the back seat of the car or in the boot. </span><br />
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<span style="font-family: Verdana, sans-serif;">The worst, and I cannot ever bring myself to do this, is to change him on the floor of the toilet. This is what some people have to do, could you imagine doing that with a baby? There would be uproar. Those Daily Mail readers would be up in arms. </span><br />
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<span style="font-family: Verdana, sans-serif;"><a href="http://www.changing-places.org/" target="_blank">Changing places</a> are currently running a fabulous campaign to try and get suitable changing facilities into public spaces. And by disabled toilets we don't mean a wider space or a hand rail. We need a changing table, a hoist. You get the idea.</span><br />
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<span style="font-family: Verdana, sans-serif;">That's why when I discover a place that has suitable facilities for Zack I am really, truly delighted. And Eureka did not let us down. Oh no. There was a suitable toilet with hoist and changing table. </span><br />
<span style="font-family: Verdana, sans-serif;">Jump up and down and clap. Yes, well done. This makes life so much easier. Thank you Eureka.</span><br />
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<span style="font-family: Verdana, sans-serif;">It seems however there hard work has already been recognised with a Gold Award in the 2015 Visit England Awards, Access for All Category. Congratulations it's well deserved.</span><br />
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<span style="font-family: Verdana, sans-serif;">Zack gets a lot out of coming here. There is plenty for him to see, touch, get involved with. It's easy for us to access and they even have a scheme whereby if you give them enough notice they can get you an extra pair of hands, so to speak. A member of staff will assist you on your visit, how great is that? Here's a link to their page all about their <a href="https://www.eureka.org.uk/visit-us/disabledvisitors/" target="_blank">accessibility</a>.</span><br />
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<span style="font-family: Verdana, sans-serif;">I think you've gathered we are big fans of this place, it gets a massive 9 out of 10 from us. And a huge plus points for working hard on making it inclusive and accessible. We will be going again......well, it would be rude not to, we have our annual passes now.</span>nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com2tag:blogger.com,1999:blog-8142407007870086991.post-33432370999008501032015-09-21T12:41:00.000-07:002015-09-24T11:46:48.136-07:00Good days out<span style="font-family: Verdana, sans-serif;">Did I mention that Zack had a great summer.</span><br />
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<span style="font-family: Verdana, sans-serif;">Yes, I know we didn't have the kind of summer we are used to, oh, sorry, we did, yeah not much sun, not very hot but hey at least it was dry. </span><br />
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<span style="font-family: Verdana, sans-serif;">We had some good days out, days out that I found myself on making mental notes of how accessible they were, how good the facilities were and I really must write a few blog posts about them. Well it may prove useful to other parents/carers looking to take out their adventurous little ones. Lets face it, going on a day out is really tough when you have a child with a disability, it's not like you can just hop in a car and off you go, enjoy your day. No, it needs planning, it needs people, it needs a large amount of bags, so many you think it's a week's trip not a day. But Zack needs to experience the same things that other children do, his sister needs to know that disability doesn't just mean staying inside the house, it means fun, it means laughter and however tough it may be to do this it is well worth the effort.</span><br />
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<span style="font-family: Verdana, sans-serif;">What follows is a few posts about days out from a disability perspective.</span><br />
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<span style="font-family: Verdana, sans-serif;">They are:</span><br />
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<span style="font-family: Verdana, sans-serif;">Eureka Children's Museum</span><br />
<span style="font-family: Verdana, sans-serif;">Stockley Farm</span><br />
<span style="font-family: Verdana, sans-serif;">Knowsley Safari Park</span><br />
<span style="font-family: Verdana, sans-serif;">Dunelm Massey (the stately home that sells bedding) ahem, </span><span style="font-family: Verdana, sans-serif;">Dunham Massey</span><br />
<span style="font-family: Verdana, sans-serif;">Sandcastle Blackpool</span><br />
<span style="font-family: Verdana, sans-serif;">Southport</span><br />
<span style="font-family: Verdana, sans-serif;">Gullivers World</span><br />
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<span style="font-family: Verdana, sans-serif;">On a completely different note, over the summer Zack lost two teeth. He now rocks the snaggle tooth look and has a new attitude to match.</span> <span style="font-family: Verdana, sans-serif;">The tooth fairy was kept busy and is now a bit broke. Hope you enjoy the next few days out posts.</span><br />
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<br />nhttp://www.blogger.com/profile/03470754332084755915noreply@blogger.com0