We’ve spent 11 weeks shielding Thomas from a virus we fear may kill him. Thomas hasn’t left the house in that time. We have left only for exercise.
We’ve watched as around 40-60,000 people have died around the country from Covid-19, leaving families devastated. Some that we’ve known who have not been able to grieve with extended families due to the government restrictions. Yet our area has so far remained relatively unscathed. I don’t know of anyone personally who has had it fir certain locally, though I’m sure there have been some. The figures for our health authority show a very sharp rise in cases recently though so it very much feels like it’s out there to us. I feel we are still coming to a peak.
We could discuss the political decisions all day. I don’t intend to get in to the rights and wrongs of policy decisions but it’s not possible to ignore them. It’s especially complex here in Wales, as we have a separate government (as do Scotland and Northern Ireland) but only some matters are devolved. Health, social care and education are devolved so the Welsh Government creates policy in those areas and therefore has laid down the the Coronavirus rules and regulations for Wales. The Welsh Government intended to remain in step with the UK government but when the UK government loosened restrictions, when Wales was still seeing an increase in cases, the Welsh government took its own path. However, it can’t make decisions on supporting employees, with the furlough scheme coming from the UK government who have control of those matters. This and other reasons means they can’t completely go it alone in their restrictions and they have recently made changes allowing some meet ups in outdoor spaces but stricter than in England.
The situation with devolution has led to huge confusion, especially as the UK government and press relay decisions made by them as if they are UK wide. Even people living in Wales don’t always understand and think what Boris Johnson announces applies here too so it’s understandable that people living in England don’t appreciate the difference.
What we’ve therefore seen in the outside world is a relaxed attitude to the virus. People once again meeting up and even packing beaches and beauty spots in some areas. It seems many think the risk is over or that they weren’t at risk at all anyway.
The latest decision in Wales is that schools will open on June 29th, less than 4 weeks away. As I said, in our area cases are still rising. I won’t be sending Thomas. I very much doubt I’ll send our daughter but they can’t stay home forever.
That means we’re in the position I anticipated we’d be in when I wrote my last post. This isn’t going away. Many argue that was the UK government plan all along: allow the virus to pass through and hope for herd immunity. As I said we could argue the rights and wrongs of that all day. It’s irrelevant. The fact remains that this is where we are.
Covid-19 isn’t going to be stopped. It will keep going in it’s current form or mutate like the flu. Most people will experience it and not get seriously ill or die but not everyone will. I really don’t know where Thomas fits in. We never received a shielding letter from the government, though the GP provided one, agreeing Thomas was extremely vulnerable.
We, and others with extremely vulnerable family members are left wandering a path on our own. It feels very much like we have been abandoned. The responsibility is on us. A shrug of shoulders from the governments.
Sometime my daughter will have to return to school. She really isn’t doing well at home. Sometime my husband will have to go into the office. Sometime I’ll need a break and need a carer or family to come in to give me some respite. I also have a job offer. Sometime I have to start that job.
Since the signs showed that Covid-19 was likely to reach pandemic levels I’ve been anxious for Thomas. For me that began the first days of March. I admit I initally dismissed it when a friend raised it with me but that was in part due to dismissing anything certain sections of the media consider a concern and feeling that as it was all out of my control at that stage then I shouldn’t overthink it. A few days later and I was nervous.
Maybe my friend and I were worried earlier than others as much was said about how only the vulnerable were at risk and we both have sons with medical needs. However, despite all Thomas’ needs we haven’t received any correspondece from the NHS or government to say he should be shielded. Yet Thomas has serious brain conditions, which have resulted in epilepsy, cerebral palsy and Profound and Multiple Learning Difficulties. Initially it was suggested that those who needed to shield were those who qualified for the flu vaccine for health reasons, which Thomas does. Then guidance referred to “extremely vulnerable”. The latest guidance on who is “extremely vulerable” doesn’t now apear to include Thomas’ conditions at all, yet the other day it referred to “diseases of one organ” and “neurological” was one example.
As his parents we can’t see how Thomas can’t be anything but extremely vulnerable in this situation and so we had difficult decisions to make very early on. I asked my husband to consider working from home from the second week in March and I talked about keeping both children at home. However, our daughter had already missed the best part of 6 weeks of school due to her own illness and we’d already had a letter from the Local Authority about her absence, despite them all being authorised. She’d only just started going back to school with reduced hours.
My husband initially wasn’t concerned about working from home and said there were no signs of the virus in his office but he spoke to his manager on the 12th March who agreed that he should work at home from then on. A few days later two colleagues reported they had symptoms. Thankfully my husband has been fine and I feel grateful he stopped going to the office when he did. We decided then we’d restrict our contact with people and from the 17th March we kept both children off school. I went in to collect Thomas’ standing frame and other items like his feeds the next day. It broke my heart that we made a sudden decision and Thomas never got to say a goodbye to his teacher, one to one support and others. Well, more that they didn’t get to say goodbye to him, because I knew his absence wouldn’t be brief.
We decided then we’d have to also stop having carers coming into the home and have no respite care at all. We decided this both for Thomas and for other families to limit who the carer had contact with just in case we carried the virus and spread it. It was apparent to us that despite guidance about isolating once you had symptoms that the virus was spreading from infected people before they were aware they had it.
We had our after school care for the last time on the 18th March. I wanted our carer to be able to say goodbye, as she’s the one we’ve had consistently for nearly 7 years. I felt like we were taking a chance, given we had felt we shouldn’t have contact with anyone now but with no reported cases in our area we knew it should be OK.
Since then we’ve had nobody else in the house and no respite care or support. Thomas was due a hospice stay over the weekend of 28/29th March, as we were supposed to run the London Landmarks Half Marathon after I got a place in the ballot. The event was eventually postponed, although we’d already ruled it out and we cancelled the respite stay. He’s due another in May but I can’t see that happening either. Whatever the government decides I can’t see we’ll come out of isolation for many months.
A typical day now for me is to do Thomas’ initial care when he wakes up about 7am – position him on his back with postural support, turn off his feed and flush his feeding tube, give him his medication, change his pad and dress him. I then get myself organised and get some jobs done, leaving Thomas with a story CD. If I’m awake early or he is late then I try and do a yoga session.
I can deal with the mornings a lot better. I do Thomas’ physio sessions. This is when I get a chance to interact with other people, as I can hold my phone whilst doing some of the stretches. After lunch I feel a bit lost. I have so many things I know I can do with Thomas but I feel he’s fed up with being home now and he doesn’t seem to respond that well! We have options of him going in his standing frame or going on his eye gaze. However, he seems to have stalled on his eye gaze and is pretty much only interested in his YouTube videos grid where he’ll predominantly watch my song for him, “Rule the World”. Even I can have enough of it after 2 hours! Though it’s amusing when he does it for his dad at weekends. I swear he does it to wind him up! He puts it on and looks at Dad and grins then laughs when he responds “Not this again Thomas!” or similar.
I feel a permanent guilt at the moment. I feel I don’t do enough to stimulate Thomas, as I’m thinking of what else needs doing and seeing to washing and dishes and trying to get some shopping etc. Shopping has been a big issue. We’re too afraid to go to any shops but online orders are like gold dust. I now have a collection for next weekend after I placed an order at 2am.
When I organise these other things then Thomas is happy and content in his chair with his switch and a switch adapted toy or something else to take his attention but I still feel it’s not enough. It’s hard to motivate myself to try other things when I feel I get little reaction from him though. I do feel he’s bored of me!
I feel guilty towards my daughter as I don’t feel she gets our time but, to be honest, she’s at that age where it’s fairly normal to hide in her room anyway. Certainly she says she’s fine and doesn’t want anything when I ask her.
I get out once a day. My husband and I take it in turns walking the dog when it’s his lunchtime then the other one of us goes for a run when he’s finished work. That person then cooks whilst the other has been getting Thomas ready for bed.
After our meal we spend time with our daughter. I have been craving documentaries or serious films. I think I’m lacking mental stimulation and want something to exercise my brain in the evening. The problem is nobody else does! I make do with a bit of reading in the evening then I get to sleep too late.
It feels like a treadmill and I can’t see an end. I’m trying not too look to far ahead, as what’s the point? It’s so uncertain. What I do anticipate though is difficult decisions ahead again. I strongly suspect that schools will return before we get to a stage where everything is safe. We then will be faced with deciding whether we allow both children to return or not. From the outset I was anxious about Thomas’ sister transmitting the virus, despite what was said about children not suffering badly from it or there being evidence they transmitted it without symptoms. I know from bitter experience that children can be asymptomatic and carry serious viruses to others. It’s probably why we are where we are with Thomas, as his conditions are caused by CMV (see my previous blog “In the beginning – the path to diagnosis” https://ridingonastar201295083.wordpress.com/2019/11/20/in-the-beginning-the-path-to-diagnosis/) However, keeping our daughter off school could harm her education and mental health and the issue could continue for months, even years. Everyone hopes for a vaccine but even that could take a year or more. There’s no guarantee she’d be fine with the virus either though seeing as a child a similar age to her (without any health issues) has sadly died, so both children and ourselves could be at risk. It’s just so overwhelming.
This will be my last blog for some time I suspect as there’s just no time to write now. It’s only the Easter break that’s given me a chance.
As we pass Christmas and start a new year I start to think about how it will soon be Thomas’ birthday and I feel a mix of emotions.
As any follower of this blog will know Thomas is profoundly disabled. He has no mobility and his understanding is very limited. Developmentally he’s around three months old in all aspects and will not advance much further. He’s classed as life limited but does not have a specific prognosis. He is however, the happiest little boy in the world. He is constantly smiling and laughing. He brings us so much joy.
Birthdays are hard, however. He has no idea it’s his birthday. He doesn’t register he has presents or cards etc, and he is tube fed so he doesn’t eat cake (a little mashed up with custard maybe but that’s it). The celebrations mean nothing to him and they’re a constant reminder to me of how he is different. Also, after his birthday there are the anniversaries of all the events that came after his birth, and it stings.
I also know that for the following three weeks or so after his birthday I’ll feel emotional, remembering what happened nine years before.
My pregnancy and his birth were quite unremarkable, save that Thomas arrived on his due date, for which there is a 5% chance. After his arrival I felt my family was complete, he being a brother to our two and a half year old daughter. Nothing prepared me for what was to come next.
I expected to go home the day after Thomas was born. He was born at 8:30pm. Instead he was taken to the neonatal unit due to a rash, which blood tests showed came from an infection. He was placed in an incubator and was attached to wires and monitors. I don’t remember when, but at some point he was put on oxygen. Later that day a consultant came to see him and remarked his head was small, which could indicate that his brain was not developed.
Thomas spent a total of three weeks in hospital. His infection cleared up in a week or so but his oxygen saturation levels were up and down so he didn’t come off oxygen for two weeks. It was concluded he was fine, his levels were fine. In the meantime he’d undergone various attempts at an MRI, eventually having one successfully at 10 days old. The following day, we were given the results. It was confirmed Thomas’ brain had failed to grow properly. At that time we were told it was so severe he’d only live a few months.
My world fell apart. I cannot begin to describe the pain I felt for those next five days.
We ended up seeing a neurologist as Thomas was rushed to the specialist children’s hospital at 16 days old. We’d actually been making plans to get him home for the end of the week, as he’d come off oxygen. Although we expected to take a medically fragile baby home, whom we could lose at any time.
Thomas had other ideas however. He’d vomited all night and it was found his bowels were twisted. He had an emergency operation that night after we’d signed the consent forms, all the risks being outlined. Just before he went in to theatre we saw the neurologist, who’d seen Thomas’ MRI scan. He explained that things were not as severe as we’d been told. Thomas had microcephaly and polymicrogyria. He explained he could have some learning disability or be severely disabled but that he was not at immediate risk of dying.
Thankfully, Thomas recovered well from his operation and he came home five days later but we had no idea what to expect for him.
In the few weeks after Thomas’ birthday I am reminded of his first difficult few weeks and the rollercoaster we went on until we got him home.
I absolutely adore Thomas and having him has enriched my life so much. His birthday is special, as with any child, as it marks the day he arrived. But it is also tinged with sadness, I feel we go through the motions and it’s lost on him. To him, it’s just like any other day.
No parent should have to bury their child, but we’ve known since Thomas was a matter of days old that he isn’t expected to live beyond early adulthood. For a few days we were actually told he’d only live a few months, then a neurologist’s analysis of his MRI scan revealed it was no so drastic as that. We spent 5 days though holding and looking at our baby believing he wouldn’t survive the year. I’ve never known pain like it. I understood the feelings behind self-harm that week, the thought that maybe physical pain could take away the emotional pain (I didn’t try it). I can therefore anticipate what it may be like when the time comes.
We’ve been told now that Thomas is life limited, that his life will be shorter than it should have been due to his conditions. Nobody has given us any time scale though. He qualifies for care at the local children’s hospice, which is for children who aren’t expected to live beyond 25 years old but I really don’t know what to expect.
Thomas is currently 8 years old and we’re so lucky. He is remarkably healthy given his conditions. He has a serious brain condition that has left him profoundly disabled in every respect. Yet he doesn’t currently suffer seizures. I know parents of children with epilepsy and it looks such a frightening thing to have to deal with. As every year passes and Thomas remains seizure free I breathe a sigh of relief. I don’t know how much I can relax though and if there’s still a chance he could develop them. For now though it’s a trauma we don’t have to deal with.
Thomas is also very healthy in other respects. Not being mobile means he doesn’t run around and exercise his heart and lungs like healthy children. He also lies flat a lot more that healthy children. Children like Thomas are therefore more at risk of infections, particularly chest infections. As he has reflux Thomas is also at risk of aspirating (vomit and saliva going into his airways) which can cause issues such as chest infections. He’s only had one chest infection in 7 years though and wasn’t too ill. The last overnight hospital admission due to illness was for bronchiolitis when Thomas was under a year old and many healthy babies get that. He is quite remarkable.
Thomas’ good health though leaves me in the paradoxical situation that I’m terrified I’ll die before him. He’s so healthy it’s so hard to think of him dying in the next few years so what if I and my husband go first? We’re only in our 40s now but who knows how healthy we’ll remain and how long Thomas continues to do so. Then there’s obviously the chance of sudden events like accidents.
I have absolutely no idea what would happen to Thomas if something happened to my husband and I. We have wills prepared and my parents listed as guardians for Thomas and his older sister. We made our wills when he was a baby and were advised to add a Letter of Wishes to go with it. This isn’t legally binding but gives your preferences for things like care for your children. I have only just done it though because I didn’t know what to say. I have just tackled it with my parents who have reassured me the children can live with them. I was so scared of talking about it for years, as I was afraid they’d say they couldn’t do it as they couldn’t cope. I would have totally understood if they did but I still didn’t want to hear it.
Having these thoughts and feelings recently has prompted me to seek advice and review our wills. I’ve been advised we need at least one other guardian, someone of our generation but I can’t think of who I can ask. As I said above it’s a massive responsibility for anyone, especially as those who have their own children and responsibilities even if Thomas didn’t live with them so I don’t know who to ask at all. Imagine how difficult it would make a friendship if I ask someone and they said they couldn’t do it. Whilst I’d understand I’d feel awful for having asked them. So it’s on hold because I don’t know what to do.
The biggest fear is therefore both my husband and myself dying but even if it was just me that’s scary too. I’m Thomas’ main carer. I’m the one who deals with all the professionals, who does the research on methods of communication and so on. My husband works away with a long commute so whilst he is wonderful with Thomas (and Thomas loves his Dad so much) then he’s less involved and less aware of everything. He’d have to give up work and take it all over but going with me would be tonnes of information. I’m sure my husband would be more than capable but I know how lost he’d be for a long time.
I don’t know how much Thomas would be aware. He certainly recognises us and has his favourite people but I don’t know if he’d notice if I was gone. In some ways that’s a blessing I suppose. In others it breaks my heart.
I haven’t forgotten my daughter here. I just can’t bring myself to think about the effect on her in any circumstance. It breaks me.
This whole thing is something that comes to me occasionally but I’ve forced it into a box and I daren’t open it. I know when I’ve lifted the lid on it, it hurts so much that I have to force the feelings back in and put the box away. I therefore find myself in a situation where I am terrified I may not bury my own child because the alternative seems so much worse.
Thomas was less than 24 hours old when we first knew there may be an issue. “We’ve noticed his head is very small” the consultant said. “This could indicate a problem with his brain.” Terrifying. “But it may be you’re just a family who have small heads and he’s inherited that.” So, measurements were taken of our heads. Thomas’ head was on the 0.4th centile and his height and weight were between the 25th and 50th. Me, I was on the 96th, leading to much teasing ever since. Paul was on the 50th. So it wasn’t that we were a family of small headed people.
To me my little boy looked perfect. He was in the neonatal unit due to an infection but he’d been born on his due date and was a healthy weight. The infection was a short-term problem I thought. He’d get treated and be home soon. Not ideal, as I hoped to take him home to his sister the day after he was born but it won’t be too long. Then this. A possible problem with his brain. Probably my worst fear. Less than a year before we talked about adding to our family and I said “But what if we have another and they have additional needs, how would we manage?” I asked Paul. Those words came back to haunt me.
He was 11 days old when we got the results of an MRI scan. We entered the room and sat down with the consultant. We’d never met him before. Thomas’ had gone on holiday the day after raising the fact that he had small head. Since then we’d seen the duty consultant, so someone different every day, who the next day would refuse to answer our questions, as they weren’t the duty that day. A nurse from the ward came with us. She sat on a table, whilst Paul and I sat on a sofa, the consultant opposite. “I have the results of the MRI” he said. “I’m sorry but Thomas’ brain isn’t developed properly. He has lissencephaly. This means he’ll only live a few months.” I’m sure he said more than this but that’s all I took in. I just recall the nurse, sat on the table, swinging her legs back and forth, not a care in the world. We were then just left. The consultant went to carry on with his work and the nurse hers. She remained on the ward, taking care of Thomas, but not a word to us. Maybe she was a fantastic nurse to the babies in her care but for us, there was no care or compassion. We were alone.
I’d never entertained the idea of self-harm. I still didn’t get that far but I can remember walking back to the neonatal unit after having been out to get a drink, or lunch, or something, and I remember seeing the doors to get in and getting the feeling that if I hurt myself somehow it might take away the pain inside me. It would be a distraction from the overwhelming emotional pain inside. It’s not something I can fully recall now and I don’t think anyone can grasp it unless they’ve felt it. I didn’t know how it was ever going to go. I was grieving already for my baby boy and he was still with us. We had no idea how long for. Yet it seemed so unbelievable. He was still on oxygen but he was over his infection and the oxygen was only on a very low level. We just couldn’t seem to get him off it as his oxygen saturation levels (his SATs) were erratic. Turn the oxygen up and his alarm would go off as his levels were too high, but when the nurses turned them down, he’d alarm through being just too low.
It was late Friday afternoon we got the MRI results. That same day I was told I could no longer stay on the ward, as the room was needed for a family who were preparing to take their baby home. I had been allowed a room as I was breastfeeding. Thomas, like his sister, had taken to it naturally, although he had to be woken up for a feed often as he could go about 5 hours without one. I was shown round some student rooms on the hospital site as an alternative. It was all very unclear if someone was already staying there yet there was a mouldy orange on the worktop. I opted to stay at home. Thankfully we lived a stone’s throw from the hospital. It was probably a good thing. I lay with my head on Paul’s shoulder, his arms around me and I sobbed.
On Monday we asked if the duty consultant that day could go through the results of the MRI again. We didn’t expect different answers, and we didn’t get them but we wanted to be clearer. We met with the consultant who came to be Thomas’ consultant for the next two years. He didn’t refuse to deal with us for the rest of the week. He helped us make plans to take Thomas home. We asked for him to take on Thomas, and he did.
In that meeting we ended up with the same nurse. She did the same. She sat on a table and butted in, asking the consultant to clarify things. Things we’d already heard and didn’t really want to hear again. It’s not like she asked so she could understand some more, to help us, so I don’t know why she felt the need to ask. It was intrusion. That was it then again though. No other support and each time we had to deliver the news to family and friends.
A couple of days later and we hoped to take Thomas home by the end of the week. I had got a bed on the ward again and I was woken early to be told Thomas had vomited all night. There were concerns with his bowels. An X ray later confirmed they were twisted and he was rushed by ambulance to the specialist children’s hospital, an hour away for an emergency operation. As we waited for him to be taken to surgery the neurologist came to speak to us. He had a brief chat about Thomas’ MRI and the impression we got was that things weren’t as dire as we’d been led to believe.
Thomas was taken for surgery about 8pm. We decided that neither of us would go with him whilst he went under the anaesthetic. It’s something I feel some guilt about now, but only one of us was allowed to go and I was so terrified of being on my own and we knew at 16 days old Thomas was none the wiser. We then had an anxious evening waiting for Thomas to have his surgery. 3 hours later we were informed that the surgery was successful and we could go and see him. The next 5 days are a blur. I know from Thomas’ operations since that the wounds need monitoring and possibly stiches being removed. I don’t remember any of that. I mainly remember trying to re-stablish breastfeeding. I’d begun to give up, as the pressure for him to eat increased the day I managed to pull out his drip when it got tangled round the chair. It just felt so important to me to establish it again seeing as I had been breastfeeding. Also, I know breastmilk can aid brain development and my little boy needed all the help he could get.
Somehow, we managed it. Thomas began breastfeeding again, and when he was 3 weeks old he came home. Before that Thomas had a CT scan and we had a meeting with the neurologist. Thomas, he said, had microcephaly (meaning small head) and polymicrogyria (meaning small folds). He also had calcium deposits on his brain. Essentially Thomas’ brain had not developed properly. We were told this could mean he could be severely disabled or he could have mild learning difficulties, or anything inbetween. Given what we’d previously been told this was really positive and we felt we could deal with whatever life gave us.
Once it was apparent Thomas had some issues efforts were made to learn the cause. Blood tests were taken and all proved negative. We had to give blood samples and spoke to a geneticist. Before we came home a urine sample was taken. A few weeks later we received a letter from the neurologist saying Thomas’ urine had tested positive for CMV (cytomegalovirus). That was it, apart from a remark about how he couldn’t understand why the blood test hadn’t discovered it. What families like ours did without the internet I don’t know, because we’d never heard of CMV. What we learnt was that it is a flu type infection and it can damage the development of the baby if a woman catches it for the first time whilst pregnant.
Thomas’ consultant called us in for a meeting the next day. He apologised for us receiving the letter with no more information and that’s why he’d got us in as soon as he could, He explained that I had likely caught CMV early on in my pregnancy given the damage it had done to Thomas’ brain. He also said that with the brain conditions and also the calcium on his brain he was “highly likely to have significant problems”. I’ll always remember those exact words. I was crushed again. But we vowed that we’d take each day as it came and treat Thomas likely any other baby until any differences became apparent.
That was nearly 8 years ago. The start of a very long journey. It didn’t take long for the differences to show and we realised Thomas was at the more severe end of the spectrum. I do feel quite bitter about the lack of support when Thomas was diagnosed. The consultant we then had permanently after Thomas was discharged (until we moved out of the area) was brilliant and really empathised but didn’t know where to direct us. He did his best though and we really appreciated that.
We’ve learnt a lot these last 8 years and I wish I could go back and tell myself then that it will be tough. It will be hard at times to see how different Thomas is to other children and you’ll have battles to get him what he needs but Thomas will bring you joy and happiness and he will light up your world.
The Raising the Bar conference is dedicated to the Core and Essential Service Standards for supporting people with profound and multiple learning disabilities (PMLD). (Download them here: http://www.pmldlink.org.uk/wp-content/uploads/2017/11/Standards-PMLD-h-web.pdf ) The first (and supposed to be one-off) was held two years ago to launch the standards. A second was held due to demand, which I attended, and it now looks to be an annual event.
I attended the second conference and couldn’t wait to attend this year. Raising the Bar is an amazing place to connect with people who feel passionate about improving the lives of people with PMLD. I made so many new friends and connections after attending last year, and finally got to meet Joanna Grace whose work has influenced a lot of what we have done with Thomas. He loves her sensory stories and I’ve taken many ideas from her book “Sensory Being for Sensory Beings” (https://amzn.to/32UVoAC).
This year I was also privileged to speak at the event, presenting a workshop along with the parent of another child with PMLD, Emma Pauley (https://milliesmovement.wordpress.com/). This is my account of the day.
My day started by meeting Mary from Story Massage. We have had Mary’s book “Once upon a touch” (https://amzn.to/366YnId) for a couple of years. We’d connected on Twitter the night before and I said I’d be mentioning her story massages in my talk so we arranged to meet and chat about it. It was so lovely to share the enjoyment we’ve had from her book. Thomas really enjoys the stories we do and I have written my own to prepare him for his bedtime routine.
We then headed to the venue, which already had people arriving. There were exhibitors setting up and some delagates arriving and there was a buzz of excitement. I soon met up with Emma Pauley who was presenting in the same workshop slot as me. We didn’t know each other before and had only spoken a couple of weeks ago so it was wonderful to finally meet and have her to share the day with.
The event started at 10am with a range of speakers in the auditorium. Andrea Sutcliffe of the Nursing and Midwifery Council was up first telling us about the role of Learning Disability Nurses. I am not aware of any LD nurses in our area and made a note to look into this. The main point I took from Andrea was also “People matter”.
Sheridan Forster, speech pathologist presented via videolink all the way from Australia. Her talk was about presuming competence and how there is a degree of ablism in this concept, as it places an expectation that all people should communicate as neurotypical people do and we should perhaps presume they can’t and learn to communicate their way. Her talk is on YouTube available here: https://youtu.be/DcIIOa20_5w and I’ll be watching it again when I can.
Professor Melanie Nind was next up. I had met her the night before, not knowing who she was and afterwards I leart Jo Grace is in awe of her the way I am in awe of Jo! Melanie talked about the concept of “Belonging” and is editing a book of the same title. Another one to add to my increasing list!
Lucy Garland and Amber Onat Gregory spoke about Frozen Light, which “creates exciting and original multi-sensory theatre for audiences with PMLD”. It sounded absoltely amazing and I really hope they visit North Wales so we can take Thomas. Again, something for me to keep an eye out for in future.
Before the first set of workshops we had an update on the Standards from Ann Fergusson, PMLD Link. From my own experience I’ve had them referred to in the Welsh Assembly by my AM and I also referred to them during the consultation stage of the North Wales Learning Disability Strategy and they are referenced in the newly published strategy! So we can all do something to get these Standards out there and raise the bar for people with PMLD!
Next were seminars and I was spoilt for choice. I opted for the one about music therapy with Sophie Gray talking about Sounds of Intent and Leanne O’Keeffe of Music Therapy Works. Both were really interesting. Sounds of Intent aims to investigate and promoate musical development in people with learning difficulties, including PMLD and have developed a framework to assess their development. It’s available free on their website http://soundsofintent.org/soi.html. Leanne showed a video “Truly Meeting Caleb” demonstrating her work with Caleb, who has PMLD. It’s a beautiful video and features Caleb’s mum talking about the affect of music therapy on him. See it here https://youtu.be/xAbyEV8qUrc.
It was then lunchtime and it then hit me that it was soon time for my workshop and I became very nervous. I also spotted Sally Phillips had arrived! I forced down lunch, feeling too anxious to eat really. I then took my opportunity to meet Sally Phillips after asking Jo Grace if I could! I then garbled at poor Sally seeing as I was a bag of nerves as it was!
After lunch it was back to the auditorium where Emma Murphy (Happy Little Hugh http://www.littlemamamurphy.co.uk/) was speaking about quality of life for people with PMLD, from the perspective of a parent of a child with PMLD. As another example of how great the event is for connecting with like-minded people Emma and I had met and got to know each other at last year’s event. Emma talked about how medical professionals have appeared to question whether Hugh has quality of life, as she has been asked during hospital admissions whether she wants him resuscitated or not. Something she’s not been asked about Hugh’s brother. Emma highlighted what a happy little character Hugh is and played a video showing him living life to the full, with a variety of experiences.
Emma was followed by another parent carer, Alison Pettitt. She told the story of her son Timmy, who was in pain for months up until his premature death, whilst professionals did not listen listen to the concerns and wishes of Alison and her wife. It was truly heartbreaking to listen to and the rest of the room was silent. I doubt there was a dry eye in the place. Alison’s story though was bittersweet. She told us of individuals who had supported them and been angels in their lives, making events slightly less unbearable. Her message was “To the world you may be one person but to one person you may be the world”.
Unfortunately Emma (Pauley) and I had to miss the next speaker as we had to go and set up and prepare our seminar. I had seen we had 15 people on the list for our workshop which was a nice enough number and a relief to see, as I’d been so worried nobody would come! Self doubt had been creeping in when I’d been looking at all the seminars on at the same time, although had been reassured many times by Jo Grace and Ann Fergusson that people do want to hear the parent’s voice!
I’m pleased to say that once I got talking the nerves fell away and I enjoyed sharing Thomas’ story. I talked about how negative his diagnosis had been and the low point I reached when he was around 18 months old and I could see the issues he had. We’d been told he was “highly likely to have significant problems” and at that time things felt very bleak. I then shared what we have learnt since and how truly wonderful Thomas is. He’s full of joy and determination and lights up our world. I talked about his communication journey which you can read in my previous blog “A little less conversation” https://ridingonastar201295083.wordpress.com/2019/06/12/a-little-less-conversation/ I also shared how Thomas is an adrenaline junkie, loving his skiing sessions and other adventures. I want to show the world what can be achieved by a child with PMLD so that others have higher expectations of what they can do if given the opportunity.
Emma then spoke of her daughter, Millie, whom she refers to as her little tornado. She spoke of how time is so important and gifting your time can have a big impact. She highlighted this by telling us how Millie attends her local Rainbows group and is able to do so due to the support of volunteers, giving up their time to help Millie. Millie being involved in a mainstream activity such as Rainbows means to much to her and her family and makes such a difference to their lives.
It was back to the auditorium for the last speakers of the day then. First up Rachel Wright, of Born at the Right Time telling us all about Camp JoJo which offers camping breaks that cater for everyone. There are hoists in the tents and off road wheelchairs and it looks fantastic! I would absolutely love to take Thomas there!
Closing the conference was Sally Phillips, actress, but also campaigner and mum to Olly who has Downs Syndrome. She had expressed that she had no experience of PMLD and had much to learn from the delegates but she went on to talk about her own experience of not being listened to, something parents of children with all different issues experience. She also recognised the different experiences we have as parents of children with PMLD to her own experiences of parenting a child with Downs Syndrome. She talked about seeing the whole person. Sally also injected some humour into the event. When she began saying she knew little about PMLD she joked that we should ask her questions about “Miranda” or something. When I told my husband Sally would be at the event he begged me to ask her about “I’m Alan Partridge”. He asked me to ask what had been in Alan’s drawer. So when Sally invited questions about her TV work I put my hand up. I didn’t actually expect to get the opportunity to ask but Jo Grace ended up coming along and putting a microphone in my hand so I did. I did make a serious point following up Sally’s comments about eugenics too but she did answer my Alan Partridge question, making me the best wife ever!! (Well I would have been if I’d thought to ask anyone to film it).
A few more words from Sally then closing remarks and it was over. I said my goodbyes and headed home. I hadn’t had a chance to get around the exhibitors in the hall at all which was a shame. I then also had to wait until I had a train with a charging point before I could charge my phone and check out all the tweets using #RtB3 and catch up on anything I missed. I finally got home 4 hours later but then couldn’t sleep for hours as the whole day buzzed round my head. New friends made and new information gathered. Such and inspiring day. I can’t wait til next year!
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This post is less about Thomas and more about me, so I apologise now! It does however relate to life with Thomas.
There are many stresses and strains involved in caring for Thomas. I have experienced anxiety for many years and I had managed this with occasional medication (Propranolol and Diazapam). I don’t need to take regular medication but sometimes there are times when issues arise and I struggle to sleep, as these things play on my mind and cause my heart to race. I try mindfulness/meditation initially but when this doesn’t work I take medication to help me sleep.
I had for some time considered I’d like to do some running as it would help my mental as well as my physical health. I know it’s important to keep myself strong and healthy given I will have to care for Thomas for the rest of my life, or his.
In January last year I saw a local running club were starting a Couch to 5k course and I signed up. I was looking at being able to get out running for about 20 minutes at a time, 2 or 3 times a week. That, I felt was all I’d have time for and would be enough to help my mental and physical fitness.
I knew my husband was keen to get back into running too and my parents agreed to come over so we could do the course one evening a week. So off we went in the cold and the dark, with a group of about 60 others all wanting to start the new year improving themselves. We got out in all weathers and having the course to attend meant we made ourselves do it and then made sure we did our homework in between so that we could keep up the next week. In March we did it, we ran our first 5k. I had achieved what I set out to do and I had also noticed an improvement in my mental health. I was relaxing easier at night and relying on medication less often. This is despite the fact that a couple of weeks after we started the course we had a very difficult and upsetting experience with a professional, which escalated and led to a number of problems with others. It continued throughout the year (and in fact hasn’t really ended) but I handled the stress a lot better than I would have in the past. I am convinced it relates to the affect of running. (I had also read this book which explained the links between running and mental health https://amzn.to/2kAHMcU )
It turns out that that was just the beginning though. Our trainers at the running club said they’d carry on if we wanted to progress from 5k. I initially wasn’t going to, I’d achieved my goal, and I didn’t want to trouble my parents any further, but when they found out they insisted they were happy to keep coming over to look after the children so my husband and I could have that evening together and I could keep running. So I went along and a small group of us increased our running week by week and in July we entered our first race, a 5 mile (8k) local run organised by the running club. I was at the back of the pack, eventually 4th from last but it didn’t matter, I had done it.
The group of us who’d been running together then agreed to keep meeting to run together. One in the group set up a Facebook group so we could co-ordinate meeting up and running together. Again we increased our distances and I entered a 10k race in early September, completing it quicker than I hoped and earning my first medal!
At around this time we had put in an application to the Sequal Trust for an eye gaze system for Thomas. On our runs we got to chat to each other and know each other better. We’d been individuals during our training, now we were friends and one night I was chatting to Pat. I explained about Thomas and mentioned the eye gaze. She told me she wanted to run a 10k race but she felt to push herself to do it she’d need to be sponsored so she asked if she could do it for Thomas. I was overwhelmed and humbled. I agreed and in October Pat completed the 10k race, raising over £500 in the process.
I began to consider taking part in a half marathon then. I now knew I was capable if I could fit in the training though the one I had my eye on, Conwy, was only 6 weeks away so I sought advice from Josie, who had trained us. She assured me I could do it and said she’d run it with me. She also then asked if she could continue the fundraising for Thomas’ eye gaze. She explained she ran the Conwy half marathon each year in memory of her son Elis, who was born prematurely and died aged 6 months in November 11 years ago and she’d like to run for Thomas too. So “Team Thomas” was launched, with fellow runner, and now, friend Sal contributing running buffs (neck scarves) to be sold in aid of Thomas and his eye gaze. The final sums were raised for the eye gaze and he received it a week before the half marathon.
The day of the half marathon was a beautiful, clear crisp morning. It was a very special day and when I really felt like part of the running community. I kept spotting the orange buffs on people whom I’d never met, whom had chosen to get behind the cause and join “Team Thomas”! It was such a boost. I can’t say I enjoyed the run but, with Josie’s support, I did it! Within 11 months I’d gone from couch to half marathon!
This year we joined the running club and attended a number of races with them. It’s lovely to go and be part of the club. It’s a social event. I may not be anywhere near the fastest but the advantage of coming in as one of the last ones from the club is there’s plenty of people to welcome you as you cross the finish line!
The whole family has also become involved in parkrun. My husband and I started running parkruns after we completed Couch to 5k as they are free, timed 5k runs on a Saturday morning. In August Josie and others from our circle of running friends set up a new one close to us. As well as running it I volunteered occasionally. One day I dragged our 10 year old daughter along when I was volunteering as my husband was taking Thomas skiing. A volunteer failed to attend and I roped Emily in to take over barcode scanning. She was less then keen and even less so at being told she had to wear a high vis top! At the end though she loved it and insists on going every week. She has achieved her 25 volunteering milestone and is really part of the team. Every Saturday morning we are doing something together as I run or volunteer there and I don’t have to feel it’s impacting on family time. On the anniversary of the parkrun starting a few weeks ago all volunteers were asked to dress in fancy dress so we went as a family with my husband, Thomas and I manning a marshall point with an 80s theme, having made Thomas a boom box costume.
Getting into running has meant so much more than just fitness to me. I am more relaxed and experience less anxiety symptoms. Added to the usual stress and burdens of caring such as fighting for services I have found I had lost my identity and become “Thomas’ mum”. Medical professionals even call me “Mum”. (What’s that about? They even do it when they don’t have to. “How’s he doing Mum?” Why add the “mum” to the end?? Anyway, I digress.) I gave up my job and career after Thomas was born. I’ve taken on voluntary roles but all related in some way to having Thomas. Now running and the running community has given me my own identity again but it’s also involved our whole family. It’s completely changed my life. I’m so grateful to all who have helped me with my journey.
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I’m often guilty of feeling guilty too often! It’s quite common as a parent, and even more frequent as the parent of a child with disabilities, especially if you have other children. Leaving Thomas in respite is one of the things I don’t think I’ll ever do comfortably and without inner conflict. That is no reflection on the hospice he attends and the care he receives there but simply because of how hard it is to split the family, taking one child on holiday and not the other.
This week has been Children’s Hospice Week, which raises awareness of the good work that children’s hospices do, and Thomas spent it in our local one. The perception is that children’s hospices are for children who are dying but, whilst they do accommodate children at the end of life, predominately they provide respite care for families whose children are classed as life limited. What that means is that they have a shorter life expectancy than other children. For example, the average age of death of people with Profound and Multiple Learning Disabilities, like Thomas, is 41 years (The Learning Disability Mortality Review Annual Report 2017).
Due to Thomas’ disabilities and care needs holidays are very difficult with him so they have been few and far between. We therefore take breaks with our 10 year old daughter, whilst Thomas receives respite care at the hospice.
Thomas has very limited understanding and we don’t know what his understanding is of staying at the hospice and not seeing us for a few days. We do know though that he is more than happy so long as he has someone giving him attention, and seeing to his needs, so he is never distressed when we leave him. To be honest, he’s never particularly excited to see us again when we pick him up!! (He does grin broadly and get excited when Daddy gets home from work and when Nanna visits for example but I barely get acknowledged when I first speak to him on arrival at the hospice!)
We know during his stay that Thomas will have one to one attention and all his needs will be met. He’s also a very sociable boy and will enjoy hearing the other children who are staying. Plus he knows he can charm all the staff with his cheeky smile. He has them wrapped around his little finger and if they don’t pay him quite enough attention he’ll employ his technique of pulling his glasses down! We know Thomas will be fine and is in great care.
Despite the fact Thomas is more than happy staying at the hospice and shows no sign of anxiety I still drive away with pangs of guilt and blinking back tears. I put myself through this for my daughter though. This week we made some amazing memories with her during a short break in South Wales. We stayed in a Hobbit House (a glamping pod), which would not have been accessible for Thomas. Our daughter loved making fires in the outdoor campfire and we went on a boat trip to see dolphins and seals. She discovered a new series of books in a local bookshop so my husband and I actually got to sit and do some reading as well (although my reading was catching up on Thomas related stuff like guides on alternative communication! – See last post “A Little Less Conversation”).
We had a fantastic time and it was definitely a break to remember.
When we set off for home though the guilt returned. I’d managed to put it to the back of my mind during the break. I have to remind myself again that Thomas is fine and if we didn’t use the opportunity for respite our daughter could miss out on amazing opportunities and memories.
After our return from our break I am grateful we had the opportunity of the respite. However, as well as the guilt there is some pain that it was a family holiday that should have been shared with the whole family, but that won’t ever be possible. Usually I’m fine. Life is what it is and I love my beautiful boy but sometimes it hits me that he should have been there too. You see Thomas’ disabilities were caused by a common, flu-like infection that I caught whilst pregnant, called CMV. Thomas wasn’t created with his issues. The infection, which I was unaware of and spreads easily, was passed to him in the womb and stopped his brain developing properly. There are therefore times that I do therefore feel some pain about what has happened to him and what his life, and ours, could have been like.
I must pick myself up and dust myself off and carry on though. And when I pick him up tomorrow I’ll be so glad to have him home, even if he’s not initially that fussed to see me! Then I’ll be fine, until the next stay.
I’m so immersed in the world of Thomas now that I can’t be sure what my perceptions would have been about communicating with a child like him. I’m guessing though that if I knew a child was non-verbal and didn’t have the ability to sign or write or type, and had severe learning difficulties that I would have thought that there really wouldn’t be a way for them to communicate. Is that therefore what people think of Thomas? Do they feel pity for him and us?
Don’t get me wrong, there are times it hurts that Thomas won’t ever tell me he loves me or wish me happy birthday but I know that he loves me. I can see it in his face. I have learnt a huge amount about communication since having Thomas and I’m learning more all the time.
For a neurotypical child the non-verbal stage is over in the blink of an eye. We don’t really notice the subtle beginnings of communication. I didn’t fully notice these with my daughter but now I’m finely tuned to them. How much did I really appreciate it when my daughter began to anticipate? But it’s a big thing with Thomas. Thomas reacting to certain thing before they’ve happened, like laughing, demonstrates he understands what’s to follow and when it’s laughter he’s excited about it. It made us so happy when we first realised. We also did get quite a giggle at one of the earliest signs of this, which was Thomas recognising the toothbrush and remembering he didn’t like his teeth being brushed. He’d move his lips in to cover his teeth a little! Now he’s moved on to recognising the words “brush teeth” so he does it when I say that.
Thomas has also always enjoyed tickles and we would hold our hands above him and wriggle our fingers before we tickled him. He then started giggling just from seeing our fingers. I probably did similar with my daughter and never thought much of it, but with Thomas, it was pretty huge.
We’ve built on this using sensory stories. These are short stories which have a sensory stimuli applicable after each line. I discovered those written by Joanna Grace a few years ago and we have bought a few of them. After a few listens Thomas clearly learns them and I can see as I read the line that he is beginning to anticipate the stimulus. With “Puddle” I dip his toe in a bowl of water and as I read I see his foot start to twitch with anticipation. With “Dream”, which I read every night before bed, he begins blinking before I brush a ribbon over his face and giggling before I tinkle the chimes.
A clinical psychologist has just begun working with Thomas using PACT (Paediatric Autism Communication Therapy). This has been developed for non-verbal, autistic children but they are trying it with Thomas. I get filmed interacting with him and we discuss it. It makes me quite self conscious but it’s fascinating. It’s about looking for subtle behaviours etc and learning about what Thomas may be communicating, such as if he may be asking for more or to stop. It’s really early days yet but it’s really exciting to to learn something new and try something different.
Thomas has also been making huge strides in communicating through eye pointing. This is using high tech and low tech equipment. He has an eye gaze system, which picks up his eye movements with a camera as he looks at a screen, so it reacts in the same way as a touch screen device like an iPad. Thomas is starting with the basics in learning how looking at the screen has an effect on it but he’s also started some basic communication. He can indicate “Stop”, “More” and “Different” and I have developed activities he can play with others such as “Thomas Says”, where he can choose to say “Thomas Says” then make a choice of things like “tickle me”, “clap your hands” and “rub my head”. He also has another screen where he can ask me to blow bubbles, bang a drum or tickle his head with a head massager. Thomas has a new Speech and Language therapist now and I’ve been working with her and his school on developing his use of the eye gaze with new ideas. I’ve just created a screen for Circle Time at school where Thomas can now say “Good morning” to his teacher, one-to-one and friends. We hope to develop this further with photos of each of the children on it if parents give permission. Thomas is in a special school but integrated with a group of children of other abilities who are all verbal. Using this equipment means Thomas can take a further role in group activities and connect with his peers.
We also use low tech equipment with Thomas for eye pointing. He has an e-tran frame which is a sheet of transparent plastic onto which symbols, pictures or words can be stuck using Blu-Tak or Velcro. I have to confess I’ve focussed more on the eye gaze, as the e-tran frame requires my judgment of where Thomas is looking. This isn’t always obvious, as Thomas doesn’t always make it clear by looking fixedly at the image, and he also has a squint. I’ve therefore lacked confidence in using it but he’s done amazingly well with it in school He’s making choices between 4 objects and they’ve been teaching him colours and shapes. With the input of his latest Speech and Language Therapist and the psychologist I am now using this more and I’ve been busy photographing Thomas’ toys and finding images to represent his favourite stories, which I’ve then laminated. Thomas can now choose his bedtime story! (The Gruffalo is a favourite).
I’m going to blow my own trumpet here, which I don’t often do. I often feel I don’t do well enough but I do know, that whilst there are some great people involved with Thomas now, a lot of it wouldn’t have happened without me pushing for things. He was without a teacher for the visually impaired for a good couple of years, as his own teacher was qualified as one but she went off sick and then left. I had to make enquiries and fight to get the Local Authority to send one in to see him. The eye gaze and e-tran frame came about from me going to an exhibition and speaking to Smartbox who agreed to give Thomas a trial of eye gaze equipment. Things snowballed and he was given the e-tran frame because the NHS wouldn’t fund eye gaze. We eventually got eye gaze equipment as I applied for charitable funding. (Some awesome friends then did some fundraising to contribute to it).
I’m not sharing the above to suggest I’m amazing or that I should be praised but to make people aware that it’s often down to the parents to secure what’s right for their child and it shouldn’t be. Communication is a basic human right. Everything should be done to provide all people with a means to do that. Children like Thomas shouldn’t be forgotten because they can’t communicate in the usual ways. This is why I do what I can to raise awareness of the Core and Essential Service Standards for Supporting People with PMLD (Profound and Multiple Learning Disability). These Standards include standards on Communication and the aim is they should be adopted by all agencies and organisations working with people with PMLD. One day maybe it won’t be such a battle to give children like Thomas their voice.
(Please visit the below link to view the Standards)
I’ve had this blog in me for a while but I just can’t think how to write it. It’s a mix of Thomas’ diagnosis and the naming of this blog. It may not be my best but I need to get it out.
We knew before Thomas was 24 hours old that he may have issues. He was born on his due date, a healthy weight. He developed an infection though and was transferred to the neonatal unit. He was placed on oxygen and, also on day one came the first hint of long term issues. His head measured small, and we were warned this could mean his brain was small.
Thomas stayed in hospital for 3 weeks in total, getting over his infection and having blood tests and investigations. When he was 10 days old he finally had a successful MRI scan and the results the next day delivered the devastating news that Thomas’ brain hadn’t developed properly.
The news was delivered with total sensitivity by the consultant that day but after he’d told us that was it. We were left with no support. We also didn’t have one particular consultant for Thomas, as the one assigned to him had gone on holiday the day after first meeting him and pointing out his head was small. We’d had a duty consultant each day, so no consistency.
It’s not the doctor’s or nurses role to care for the parents but there should be something in place to refer parents for support in these situations. At that time we were told Thomas would only survive a few months yet we were left alone with no place to turn to deal with that.
I’ve never contemplated self harm but those next few days I had a few times when I could understand why people may do it. I thought about how if I felt some physical pain it would take away my focus from the emotional pain I felt.
I’m lucky in that whilst I have experienced some low periods and I have anxiety (which I had anyway) my mental health wasn’t more significantly affected. Some parents in our situation have experienced PTSD. This week is Maternal Mental Health Awareness Week. Mothers of babies who are admitted to neonatal units and/or who are given diagnosis of serious disabilities or conditions for their children should be offered counselling or put in touch with organisations that offer it and not left to fend for themselves.
Thomas was in hospital another week and a half after that news. I spent some nights at the hospital and a couple at home when there was no room for me at the hospital. He also ended up being transferred to the specialist children’s hospital in that time due to a twisted bowel, which he had an emergency operation for.
During Thomas’ time in hospital I struggled to sleep despite being exhausted. I also was alone at night as I stayed there to breastfeed Thomas overnight and my husband stayed at home with our daughter, who was 2. It was an incredibly lonely time. I kept in touch with friends via social media but I couldn’t go into all my feelings, it was just so hard. I listened to music and certain songs took on new meaning.
I have been a Take That fan since my teens. Their music has therefore been a big part of my life. I got together with my husband a few months after they splint in the 90s and he’s made many a joke about them being rubbish and me having no taste in music. Oh how I’ve laughed now since their comeback has lasted 13 years!
It was therefore to Take That I turned during this time, particularly Rule the World and The Garden.
The Garden won’t be familiar to many of you but I loved the chorus and I felt a connection to it at that time.
This is the life we’ve been given so open your mind and start living. We can play our part if we only start believing. Yeah, this is the life we’ve been given so open your heart and start loving. We can make a start if we only learn to listen.
Many of you will be familiar with Rule the World. The lyrics really resonated with me but those that stood out most were: You and me we can ride on star if you stay with me boy (sic), we can rule the world. I lay in bed and quietly sang them for my little boy through sobs.
Since then Rule the World has been Thomas’ song to me. When he was 6 he underwent major hip reconstruction surgery, an operation of some 8 hours. I watched the anaesthetic take effect and felt an enormous fear for him. There’s always risks with operations and general anaesthetic and this was an operation we’d agreed to him having rather than an emergency operation. (The decision not being made lightly and the alternative being Thomas’ hips displacing to such an extent they caused him pain). I felt sick. We then walked to the local supermarket for breakfast. As we walked in Rule the World was just starting. I don’t really believe in signs or fate but I couldn’t help but smile.
It seemed right therefore that I based this blog name on Thomas’ song. With his bright and happy nature, and the journey he’s given us “Riding on a Star” fitted perfectly.