Rhys, my little superhero. Living with a disabled child.

This blog is all about my eldest boy, Rhys. He was born on the 4/5/08 and will be 9 in May!!! What some people may not know about Rhys is that he is disabled.

He is currently undiagnosed, we are waiting for the geneticists to come back to us about a suspected ‘condition’ they may have for him, after finding the defective gene he has, which is called TUBB2B.

My pregnancy with Rhys was brilliant, no problems at all (unless you class me gaining 4 stone as a problem!!) the birth was long and painful, but no complications or anything like that!!!

At 820pm I pushed my gorgeous 7lb12oz baby into this world with his daddy by my side!!! Rhys was beautiful! We had no idea then of the problems he would face.

We went home the next day, the adoring parents! We were totally and utterly in love with this tiny pink thing that now depended on us!!! I remember us getting home and sitting in the living room with this little baby and saying to each other ‘what do we do now?!’ We were nervous at first, but we soon found our feet like any new parent does!!!

I tried to breastfeed Rhys, I really wanted to, he seemed to be latching on and feeding, but he was never satisfied and my milk didn’t seem to come in properly. So after 3 days of this, us hardly sleeping and me being at my wits end, the midwife told us to go onto formula. I felt like a failure, but we put him on formula and he guzzled the bottle down, so I knew it was the right thing to do!!!

The days passed by, we had the sleepless nights at the start, but Rhys actually started sleeping right through the night from about 9 weeks, when we put him in his own room!! We had been sent an angel from heaven, so we thought!!!!

At around the 4 month mark though, alarm bells started to ring with me. I couldn’t quite put my finger on it, but I just had a feeling something wasn’t right with him.

He wouldn’t hold a cup or object, didn’t reach for things and was a very still, calm baby. Didn’t try to stand on his legs and just seemed quite ‘floppy”, if that makes sense?! I hadn’t had any other children at this point, so I wasn’t sure if this was just a ‘normal’ thing for some babies as had nothing to compare him to, but after seeing how Richie has developed and comparing the two, it was so clearly evident that Rhys had issues.

I decided to take Rhys to the GP at about 6 months, he was showing no signs at all of wanting or trying to sit up, would just lay there, not trying to pull himself up or anything. He constantly slouched down in his pushchair, as if he couldn’t pull himself up.

So the doctor examined him, measured his head, which was very small for his age. But said that at this age there isn’t much they can do, as all babies develop differently. So don’t worry and let’s just monitor him and see how he goes.

This continued upto Rhys being 18 months old. Rhys didn’t sit up until he was about 1 and at 18 months was showing no signs at all of standing or crawling, he would roll around the floor, so he did get where he wanted to go!! He also wouldn’t bear any weight at all on his legs and was not pulling himself up on anything. So the doctor FINALLY referred us to a paediatrician.

So 6 months later (YES 6 MONTHS!!) we finally got the appointment with the paediatrician. She did a thorough check, eyes, hearing etc etc. She said that Rhys would need to see orthotics, as they could provide special boots and other assistance to strengthen Rhys’ legs and he would also need to see a Physio. I asked what the issues were but she didn’t know, but wanted to refer him for an MRI scan to check his brain.

She then went onto tell me that the waiting time for a Physio could be upto 2 years!!!!! I went crazy, we had already been waiting 18 months to get to this point, so to then be told that we could potentially have to wait another 2 years for him to get help was just mind blowing.

So I took the bull by the horns and I found a private Physio and paid for her to see Rhys, whilst we were waiting. She came the very next day and was a lovely lady!!

The minute she examined Rhys she knew what was wrong with his legs, she showed me how much movement he had in all his joints and told me he has has hypermobility.

Basically this is what some people call being ‘double jointed’. The ligaments around the joints are super stretchy, so don’t provide support for the joints as well as they should. She explained that as Rhys grows stronger this shouldn’t affect him so much, but in the meantime he needs help to support the joints to enable him to stand up and strengthen his legs, as the longer he is off his feet, the slower he will develop. This is where orthotics comes into the equation. She also gave us some exercises that we could do with Rhys to help strengthen him.

A good way that she described it was, imagine standing up and your ankles just wobbling all over. So this was the reason that Rhys couldn’t stand, as he was scared to and didn’t have the strength.

The orthotics appointment came through pretty quickly and we went to see him, not really knowing what to expect. He examined Rhys again and said that he wanted him to wear some special ‘Piedro’ boots. He gave us a catalogue and we chose some boots for him, from the 2 choices available!!!

As soon as we left there I burst into tears. I didn’t want Rhys wearing ‘special’ boots, I didn’t want him to be different from all the other boys. But the boots arrived and they didn’t look too bad, but more importantly they supported Rhys’ ankles well, so I lived in hope that he would soon start bearing weight on his legs.

We continued to see Physio regularly, they gave us a standing frame to strap Rhys into, a horrible contraption! Basically we strapped Rhys legs into it and strapped him into the frame that made him stand up, we had to do it for as long as he would allow, before he kicked off, and amuse him, like blow bubbles and get him to reach for them with his hands. All this was to strengthen his legs to try encourage him to stand up.

I would just like to say here, that Rhys still remained a cheerful, happy baby, despite the problems he was facing. The boy always smiled!!!!

The day of Rhys’ MRI scan arrived, we were dreading it as he had to be put to sleep. We arrived at the LGI and went to outpatients. We didn’t have to wait too long until we were taken down to the MRI room. They let me go in with Rhys to be put to sleep, luckily he had actually just fallen asleep, so they just had to put the gas mask over his mouth to fully put him under. They took my baby from me and laid him On the hospital bed, he looked so tiny and helpless and I didn’t want to leave him. I ran out of the room and ran to Pez where he held me as we both had a little cry.

They told us it would be about 30 mins, it got to 32 mins and I started worrying, but they brought him up soon after. We went to his bed and allowed him to come round, he was crying when he woke up and all disorientated, so we cuddled him tight until he was ok, we were able to leave straightaway.

We waited a couple of weeks and received a call to go in and see the doctor to discuss the results. In we went, not thinking anything of it, only to be told that various abnormalities had been spotted in Rhys’ brain, but none of them pointed to a ‘specific’ condition.

We were told that Rhys had a ‘neuronal migration defect’, which basically means that some neurons in Rhys’ brain hadn’t developed properly when I was pregnant.

These abnormalities in his brain were what had caused his hypermobility, development delays and learning disabilities. She told us that she didn’t expect these to get any worse and that Rhys will always continue to develop, but at his own rate, telling us the gap will widen the older he gets.

I asked her how we would find out his condition, I was obsessed with having a ‘label’ for him, there had to be a condition for all the problems he was having. I had looked into autism and was convinced that this was what Rhys has (I still am to be honest, as he shows so many traits) Rhys’ brain scan had already been sent to the head neurologist in Cardiff but they had no idea what his condition could be. So Rhys had to be referred to the Genetecist.

I left the appointment that day and my world fell apart. I had held it together with the doctor, but once outside I couldn’t. Upto now I think we had just thought Rhys would ‘grow out’ of the problems he was having and to be told he wouldn’t and that he is ‘disabled for life’ was utterly heartbreaking.

I did not know how we would cope? We didn’t want our boy to struggle for the rest of his life, we just didn’t want to accept the fact that he was disabled.

Pez and I went through a very bad phase after this, he simply would not accept the fact that Rhys was disabled, saying the doctors must have got it wrong. Whereas I just became proactive and wanted to find ways that we could help him. We argued a lot and I’ll admit we got to breaking point, but thankfully, Pez seemed to finally accept everything and get on board with me.

Our lives became one constant appointment, we seemed to be at the doctors or hospital constantly, for tests, reports, more tests. Poor Rhys was like a pin cushion by the end of it, but our gorgeous boy kept smiling.

Rhys saw the geneticist who again didn’t have a disagnosis. All our samples were sent to an independent study, called DDD, they discovered an abnormal gene is Rhys brain called TUBB2B and advised this is what has caused his issues. We are yet to hear what condition this relates to, but the world of genetics is a very slow moving one!!!

Rhys had started to bear a little weight on his legs, but the Orthotist wanted to have splints fitted to his legs with the boots, as he said he needed more help. So my boy laid there and had plaster casts fitted to his legs, so they could make the splints.

The splints arrived, they were plastic and moulded to his legs, with a part that came under his feet. There were Velcro straps at the fronts so the splints enclosed the whole of his leg right upto his knee, he wore these with the Piedro boots. Again, as much as they were helping him, it was heartbreaking to see my boy having to wear them.

Rhys started to get much better on his feet and would take a step or two with someone holding onto both his hands, but he still struggled.

At the age of 2.5, the Physio said that she wanted to try him with a Kaye walker, a walking frame on wheels, designed for children. I cried my heart out, but accepted that it would help him.

We went to go collect the walker, we were on a long corridor and the Physio took Rhys to one end with the walker and made me stand at the other end. The Physio stood Rhys in the walker and put him in it, showing him where to put his hands. She then walked with him for a few steps. To my amazement Rhys started taking steps and wheeling the walker by himself!!!!! His little face lit up when he realised what he could do, again I cried, but this time they were happy tears!!!!

Rhys used to shoot about on this frame, banging into everything that stood in his way!!!

Then the day that we never thought would happen, happened when Rhys was 2years 9 months!!! I remember exactly where we were, shopping in next! Rhys could now walk along holding one hand, so I let him walk round the shop with me. Suddenly he said ‘let go Mummy, I want to walk myself’. So I said ‘no baby, remember you can’t manage by yourself’. So he made me let go and go my amazement started walking totally unaided!!!! My heart felt as if it would burst!!! From that day, once Rhys had discovered his confidence, he came on in leaps and bounds!!!!

Rhys slept through the night up until he turned 9 months and since then his sleep has been horrendous and I mean horrendous. If anyone has ever been unlucky enough to experience sleep deprivation, then you will know how very bad it is. Our whole lives were consumed with Rhys and sheer exhaustion. Pez and I used to take it in turns to tend to Rhys, whoever got the night off slept in the spare bed so they could sleep undisturbed. These were dark times. Rhys would wake every hour, at least, he wouldn’t be able to settle himself back to sleep, so we had to go into him and stay until he went back to sleep. We used to lay on his floor for hours on end trying to get him to sleep.

We spent money on every possible thing you could think of to help and I mean EVERYTHING!! We had black bags stuck to his windows so no light came on, you name it, we tried it. We had to go to bed by 9pm (I still do most nights!!) and would be up for the day anytime from 3am, as once Rhys woke up he wouldn’t go back to sleep. We were sheerly exhausted and did not have much of a life. We were lucky to have amazing parents who would have him for a night and let us get a break.

We didn’t get much help from the specialists, despite me being close to nervous breakdown and admitting this to them. They gave Rhys melatonin to try, but this didn’t help. They then gave us a medicine that actually helped a little bit, but this only worked for a month and then stopped working!! We were referred to Sheffield sleep centre, where we had to stay the night, while Rhys was wired to a machine to monitor his sleep, to check his brain activity, but even this didn’t come up with anything.

So, in a nutshell, we just had to live with it!!! We had to manage the best we could and accept it!!! Rhys is now 8 and his sleep is still very unsettled! We don’t know from one day to the next how he is going to be!!!

Having a disabled child is not something that anyone expects to happen and it wasn’t something that we wanted. Having a disabled child is hard, really really hard, especially when nobody knew what to do with him, we were all just winging it!!

I hear some parents of disabled children say ‘I wouldn’t change them for the world’. Well do you know what? I would change Rhys, if I could take away his disability and allow him to live a ‘typical’ life, then why wouldn’t I? It’s a no brainer for me.

Rhys is now 8, he can’t read or write. Upto September he was still incontinent and had to wear nappies. I’m so very proud to say that now he is in normal pants through the day (but he still wears nappies at night), though we have to take him to the toilet regularly and there are still accidents, but it’s progress and that’s what matters.

Rhys gets very frustrated and can lash out a lot, he also bites his wrist as a way to try calm himself down. He can ‘meltdown’ at any time, usually when we are trying to get him to do something he doesn’t want to, like get dressed or brush his teeth! So every morning is pretty much a fight, trying to get him ready for school!!

Rhys also likes to use the F word! He is really good at it and says it in context, much to my dismay!! It can be a tad embarrassing when he shouts it out when walking round Tesco!!! 🙈🙈🙈

In the early days I spent so much time wondering what the future would hold for Rhys, I would end up in tears worrying, what if he could never live independently, will he ever get married, will he go to the pub with his mates??? In the end I realised that I cannot keep thinking about the future, as what will be will be. I have no control over this, all I can do is help Rhys as much as possible now, in the hope that he will be able to live his life to the best of his ability.

Having read back what I’ve written, it all seems so negative, but I just wanted to explain the issues that Rhys deals with on a day to day basis.

Now for the positive parts of the ‘superhero’ that I call Rhys!!

I am immensely proud of him, every single thing that he does is an achievement. He finds everything so much harder than a typical child does, so for him to achieve something he has to try much harder.

Rhys is the most handsome boy you will ever meet (well in my eyes anyway!!) he has a smile that will light up a room and anyone that knows him loves him, I mean totally loves him!!!

He has an amazing sense of humour! He pulls faces especially to makes us laugh, he loves making people laugh, just like his daddy used to!!!!

The older he gets, the more and more I see his daddy in him and that makes me smile, knowing that I will always have two piece of Pez by my side!!!

Who knows what the future holds? But you know what I do know?? I will continue to do everything in my power for this boy, I will love him and be there for him as long as I possibly can be.

I want to finish this blog with a poem by Emily perl Kingsley called welcome to holland, it’s a poem that I could have written myself.
“Welcome to Holland”

By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very very significant loss. But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

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Author: samperry2017

I'm a 40 year old widow, mother to two gorgeous boys, Rhys 8 and Richie, 2. My husband and love of my life died suddenly in 2014 and life as I knew it changed. Join me on my blog, my rollercoaster of a life!!

13 thoughts on “Rhys, my little superhero. Living with a disabled child.”

  1. I love this boy. He’s got a wonderful smile, a wicked sense of humour and can be very argumentative! (I miss those arguments)
    His 1st school sports day when he used his walker but 4 yrs later he ran unaided from the start right to the finish and into your arms. I was so proud of him as I know you were.
    You don’t know what the future may bring but you have one VERY determined, stubborn little boy who proves that there isn’t a word called ‘can’t’ in his vocabulary. It may take him longer but he gets there in the end.😄😘

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  2. Awww wot an amazing boy u have Sam. I loved reading this hun and ur such great mum/ person Pez will be so so PROUD of u luvi. XxX

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  3. Hi, lovely to read your blog, you are very brave xx
    Nice to hear about your superhero too! My daughter is undiagnosed, she’s 17 now and quite severely affected. She has also been part of the DDD study. (never actually met anyone who knows what this is!) Still no answers for us though, think she will always be our little puzzle. It is extremely tough but love her to bits. I am her voice – she is my heart! xx
    Good luck with everything.

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    1. Thank u Hun. We still haven’t received our results from the DDD study, despite us being told that they have potentially found the diagnosis I for Rhys!! We have an appointment soon that will hopefully tell us!! Xx

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      1. Ours came back after about 3 years with nothing unfortunately, like every test we’ve ever had!!
        After reading your blog it’s clear your doing and amazing job despite everything you’ve been through, keep going xx
        Good luck with your appointment too.

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