Our diagnosis journey

From the minute Ryan was born it was clear to the professionals that there was something going on with my newborn baby.

Unfortunately, things were pushed under the carpet and they focused on working towards sending us home as a family and not telling us the full picture of what had gone on.

For the first 4 weeks of Ryan’s life, I was under the illusion that he was healthy! we were in a bubble of happiness, he was settled, he never cried, he slept.

I was waking him up through the night to give him a bottle, I was checking him to change his nappy. He made no signs he was ever unhappy.

Being a first time, young mum I had nothing to compare him too. I thought I had a laid back easy going baby.

After these 4 weeks, everything was beginning to change. He failed his hearing test. He was screaming throughout a bottle, he wasn’t meeting his milestones.

There was something extremely concerning going on. I googled everything, I worried myself sick.

I had convinced myself there was something wrong with his little brain, I just knew there was damage but I never expected to ever get the answers I did.

My GP doctor referred Ryan back to the hospital he was born at and expressed her concern for his delayed development.

We were offered an MRI and a few days later I was told to come back in for the results. My 13-week old son was diagnosed with Cerebral palsy. At that point, I felt as if my life had fallen apart. I didn’t know what this condition meant for us I honestly couldn’t have even told you what ‘Cerebral palsy’ was and here we were as parents to the most beautiful baby boy who was living with the condition.

The paediatrician asked me if we had any questions and the only question I could ask was ‘does this mean he could die’.

This question will always haunt me because I know his life will never be guaranteed, I can’t prevent infections I can’t wrap him up in bubble wrap and keep him safe forever.

That day when I went home I sat and stared at him. I cried.

I was angry that this happened to us, that this happened to him. I questioned if I would be fit enough to be his mum and at that moment I knew that he was given to me for a reason.

I promised him I would be the best mum he could ever hope for. He deserved a family that loves him and that’s exactly what we have given him.

Fast forward a bit and bottle feeds turned to NG feeding because he was aspiration on his milk. I never learned how to pass that NG tube because for me personally, it was a step too far.

I couldn’t bring myself to be responsible to change that tube. I couldn’t bring myself to be the reason my son was screaming helplessly, I wanted to be the person who cuddled and kisses him and reassured him he’s was okay.

The NG passing was the job for our community nurses. This later changed to button feeding. Bolus feeds has turned into pump feeding.

When Ryan was around about 1 we discovered that he was epileptic, so we have learned to adapt our life’s round unpredictable not so often seizures.

He now also has a dislocated hip which is another worry on top of everything else going on.

As he has gotten older we have come to accept that with his condition his body can and will change.

Things that were never once a problem because of a problem. One diagnosis always at one point leads to another!

Our whole life will be around management for Ryan. Making sure he’s got the essential equipment for postural management.

Making sure he gets the support he needs he regular physiotherapy he needs. Making sure his needs are always known and forever being his voice.

What my disabled son has taught me

Throughout my life, I feel like I never had a purpose. I got by day by day not really knowing what my life would come to, working a miserable job, just getting by not knowing what I would make of myself.

That all changed the day I became a special needs mum.

I genuinely believe the saying that these amazing children are born into the lives of special people.

People who have been put on this earth to protect and care them. I never knew how much I wanted Ryan until he was brought into my life and from there on together we have started an incredible unexplainable journey.

How can one little boy teach you so much?

I could write an endless list of things that Ryan has taught me throughout his short 4 years on this earth but considering my blog post would be never-ending if I did that I thought I would list a short few.

Our children are superheroes.

My son goes through so much on a daily basis and wakes up every morning with a smile on his little face.

He can make his needs known without even having to say a word. He has to endure hours of hard therapy. He might get upset but we as parents know it’s for his own good.

Ryan can make even the darkest day seem brighter with this sheer excitement over the simplest things.

He is grateful for somebody to just acknowledge him.

Some days it’s good to cry.

Parenting a child who has so many complex needs is an emotional rollercoaster.

Some days I blame myself, some days I blame others. I question why and what-ifs.

I can feel alone. I compare my child to others. I fear for the future.

I have found through my years of experience that sometimes, on the worst days or even the best days its okay to sit in a dark room on my own and cry and when I’m done pick myself back up again wipe away my tears and get on with our day.

Be grateful for your own health.

It’s not until you watch somebody else struggling to do something we find on a daily basis so simple that I realise the impact it can have on a person who isn’t so lucky to be blessed with good health. It’s not until you become responsible every day for somebody else, to do the things for that person that’s they cannot do for themselves.

From moving them physically around to changing and getting them dressed. Even down to helping them playing with a toy.

That makes me realise just how grateful I am for my own health.

We don’t take things for granted.

I am proud of my child, we celebrate the little things, the things most parents would not think twice about.

That picture Ryan drew at nursery means so much more to me than any other parent could ever imagine.

The 5-minute chat after we pick Ryan up about how his day was and what he did today at nursery makes me feel content.

The interaction with other children towards him makes me grateful he is accepted.

Every birthday is an achievement we celebrate another precious year of just having him here.

We are not ashamed of him, we don’t want sympathy we just want support and to spread awareness.

Parenting my son with special needs is the most rewarding thing I have ever got the pleasure of experiencing.

The things I have learned and the struggles along the way is something that could never be taught unless you sent a day walking in our shoes.

It’s a love on a different level that I never knew we humanly possible it’s a life lesson that will be cherished forever.

Cerebral Palsy Awareness Month

March is cerebral palsy awareness month, a time to spread awareness and love for all the people living with this condition.

As you all know sadly it’s what my little boy Ryan lives his day to day life with.

This is due to no control of his own or my own.

Back in 2015 when Ryan was brought into my life and at the young age of 21 I never knew what Cerebral Palsy was, let alone believed that I would have been a Mum to such a beautiful little boy fighting such a massive battle.

I am now 25, a full-time mum, career, Physio, nurse and whatever other job role fits, to my son… Not qualified of course but after 4 years of doing it, I may as well be.

I lift and lay him, change and clothe him, feed him via gastrostomy mickey button which I will change myself, do his daily Physio with him, administer drugs and every other job in between alongside his amazing daddy.

Ryans full CP diagnosis is level 5 quadriplegic mixed dystonic/ spastic Cerebral palsy.

To simplify this, this means his whole body is affected.

His body tone goes from stiff and ridged to loose and floppy and he cannot control his movement.

Cerebral palsy comes in all shapes and sizes and no 2 people living with this condition is the exact same.

Ryan cannot talk which makes him nonverbal, he can, however, tell everybody what he wants in other ways by shouting, smiling and moaning.

He cannot walk and by the looks of it will not walk as his left hip is completely out of place.

He requires specialised seating and a standing frame.

Ryan cannot eat due to an unsafe swallow this is caused by his inability to control his muscles; which is why there is a mickey button.

He cannot sit as his muscle tone is all over the place, he has epilepsy and has both hearing loss and vision problems.

Ryan is fully dependant on myself and his dad and will continue to be for the rest of his life.

However, the image you have no doubt pictured in your head of him is not a true representation of the little boy he is. He is just like any other 4-year-old boy.

He loves to carry on, he loves the rough and tumbles. He loves to be tickled and be made laugh.

He has the same wants and needs, the same expectations as any other person.

He wants friends, he wants attention. He wants to be accepted and loved for just being him.

Cerebral palsy awareness month really is important to our family because it allows us to educate the world about children, teenagers, and adults just like Ryan.

I think when you live a life with no difficulties it can sometimes shadow the fact that there is in-fact people out there who are living their everyday life with CP.

When I advocate about Ryan’s condition it’s not to look for sympathy, I don’t want people to think I’m a hero mum.

I just want people to be aware of the condition that globally affect approximately 17 million people.

Health is a thing many of us take advantage of .

We take being able to wake up and just do what we want for granted.

To help make a difference to those living with cerebral palsy why not let others know about this condition, help spread awareness about these amazing 17 million people so that the future can be more understanding and brighter.

A Friend Named Helen

Helen first popped into our lives back in June 2016 when we received a private message on my son Ryan’s personal Facebook page from her.

Helen reached out with some lovely words of support…  I had always known of Helen as she lived in the same street as my parents and was next door neighbours with my auntie, but I had never met her personally.

Helen is also a special needs parent. She and her partner Ronnie raised a beautiful boy who is also named Ryan.

Like our son, Helen’s son Ryan also has cerebral palsy. She devoted her life to give him the happiest life she could and to show him he was loved endlessly.

Sadly in 2015 and at the age of 21 Helen and Ronnies son Ryan passed away.

I could not even begin to imagine what you both must have went through… I am truly honoured that you have chosen to share your lovely stories and memories of Ryan and all about his funny character with us.

Helen when we first met you, you made us feel welcome it was like we had known you for forever.

The way you and Ronnie took to Ryan blew me away. It was like my son was always supposed to be in both of your lives.

You have spoiled him with kindness and thanks to yourself and Ronnie made opportunities possible for Ryan that we couldn’t have ever done ourselves.

It is no use denying that Ryan adores his alone time every Monday night with yourself and Ronnie.

I also hope the Monday nights spent with Ryan bring you both some comfort too.

We couldn’t be more thankful for your kind family also, taking time out their days to come to visit and build a relationship with him.

I think it sweet how he has built a friendship with Alex over finding Nemo and Mr. Tumble.

How he loves to show off to Danielle and Tricia and how he gives poor Anne into a row if he hasn’t seen her in a while.

I am blessed to have you as a friend because I never thought I would have met somebody who understands our life just as much as you do.

I cannot believe we have been so lucky to have found somebody who we can trust and turn too if we ever have a worry or question because you have walked in the same shoes.

Helen, you are an amazing lady with a heart of pure gold. Thank you for loving our son the way you do.

A Second Child

Nothing terrifies me more than the thought of being pregnant again… Not because I don’t want another baby because I do more than anything.

I’m terrified that everything that had happened before could happen to our family again.

I had an amazing pregnancy first time around there was no drama, I did everything by the book.

What went wrong? Could this all happen again? Would it be cruel to even want to potentially put another innocent baby in a position like that?

I was told that Ryan’s Cerebral Palsy was a thing that unfortunately just happened… could it unfortunately just happen again?

Would I ever be able to mentally deal with reliving the same heartbreak?

When I had Ryan I had to quickly grieve for the life I once thought we would have for Him but at the same time be truly grateful and accept the life he was given.

I don’t want the health of another child to be ripped away from them the same way it was with Ryan.

Is it selfish to want another child when my whole life is already dedicated to Ryan?

I don’t want Ryan’s mummy and daddy time to feel as if it has been stolen away in order for him to gain a sibling.

These are constant questions I taunt myself over.

I had always thought when Ryan was 2 or 3 years old that was when I would plan another child and then when that time came I realised that life wasn’t going to be that easy.

What happens if Ryan unexpectedly needs to go to the hospital at stupid o’clock at night? How could I function in a day if Ryan doesn’t sleep at night?

How would it be possible to care for a newborn and him at the same time?

Or how would I even go outings myself with a pram and wheelchair because I am pretty sure pram isn’t made to attach to a wheelchair?

Could I ever adapt to what they call “normal life”?

I would constantly have a syringe in my hand looking for an NG tube to feed the baby.

However, when I watch Ryan adjusts so well around other children in his nursery settings and how much he enjoys watching them play and then interacting with him, I start to think it would do him the world of good.

What if a brother or sister would bring him on leaps and bounds? It would mean he would have a best friend for life. Somebody who is always going to understand him and have his back.

Somebody who will always want to look after him if anything had to happen to myself and his dad.

Selfishly I do also want to experience the things I have missed out on with Ryan.

I want to hear a little voice calling me mummy. I want to get a tight hug that doesn’t involve me physically taking their hands and sitting it on my shoulders.

I want the crazy chaos of picking up toys, cleaning dirty food stained faces and running about after them because they are touching ornaments they aren’t meant to be touching!

I want to go to the park when it’s sunny and see at least one of my children enjoying the slide.

I want to see a little boy or girl look at their brother and tell them they love him and watch Ryan look at them.

Smiling because that’s his way of telling them he loves them too.

Does this make me a bad mum?

Should I be jealous that I haven’t ever got to have any of the things I just mentioned?

I don’t know what our future will hold, maybe a brother or sister isn’t meant for Ryan. Maybe I’m a one-child kinda woman, maybe I will have a football team full of children.

All I believe is what is meant to be will be and only the future will tell.

Fears of a Special Needs Parent

In an ideal world, every mum and dad plan to raise their children for 18 years they then watch them live their own independent life for about 30 years and hope that their children will come back to help look after them in their final years.

For us special need parents this is not the case.

We have to raise our children for the rest of our lives, we then have the added pressure of making a plan for their lives when we are no longer here.

Being a special needs parent can be difficult as there are so many challenges and fears we face.

It is not just living with my son’s disabilities that can be difficult its every other health issue that comes hand in hand with his condition.

On diagnosis day I was told ​ “Ryan has a slight scaring on the basal ganglia part of his brain and is developing cerebral palsy.”​

However, today’s diagnosis is; Hypoxic-ischaemic encephalopathy ​ level 5 Quadrapilegic dystonic/spastic cerebral palsy,​ oral aversion, ​button fed​ tone management difficulties, ​significant sleep difficulties, reflux​ epilepsy,​ hearing loss,​ vision difficulties, and his latest addition to the list is his left hip is completely out of his socket.

With all these health issues comes major responsibility and the first fear I want to talk about is trusting other people watching our children.

As our children require specific daily care we have a lot of worry about finding people who we trust enough with the tasks at hand.

For myself and Christopher, we have always been lucky enough to have amazing support from people around us, they are all so eager to learn what’s best for Ryan and show confidence in dealing with him when he’s in their care.

I will admit however I do find myself calling or texting to make sure he’s okay to put my mind at rest.​

Another fear I personally face is one where some parents might laugh and think I am crazy.

Ryan is 4 years of age and he still sleeps in the same bedroom as myself and his dad in his own bed.

The thought of not being able to hear his rhythm of breathing terrifies me, the fact he could take an epileptic fit or choke in his sleep is the reason for why we have him in beside us.

I sleep a lot better knowing that I can get to him quickly if any of this did happen and as much as sometimes I do have a laugh at myself I honestly cannot see me changing this anytime soon.

I could continue writing endless amounts of fears I have for Ryan but I will finish off with my biggest fear out of them all.

This fear is one I get upset about and really struggle to speak about.

It is the fear of not having Ryan here with me anymore.​

I could not even begin to put in words just how precious my son’s life is to me and our family.

I am a very realistic parent and understand that any serious flu or infection is enough to make Ryan health deteriorate and for him to lose his little fight.

The thought of ever having to continue to live my life without him in it is unthinkable and makes me sick to my stomach and for these reasons I have never taken anything about him for granted, I cherish each and every minute and memory I have with my sweet boy.

Personally for me, raising a child with a disability is the hardest thing I have ever had to experience and will continue to experience.

It is physically and emotionally hard but it is one of the best journeys of my life.

Dear Christopher

Dear Christopher,

When we started our relationship 7 years ago I knew we would have a family together, because for the first time in my life I found somebody I love.

I did, however, picture things a lot different to the life we live today.

Thinking back to the ‘perfect’ idea of a life we had planned in our heads compared to today’s it is 1000 times more difficult but its a journey that was made for us together. ​

I want to start my letter off to you by saying THANK YOU! Thank you for giving me the opportunity to be a mum and for giving me the chance to experience growing a life.

I have bonded for 9 months with our own little person and realized what love, at first sight, is.

None of this would be possible without you.

From the day our son was born I watched you grow from a boy into the man that you are today. From Christopher into Ryan’s dad. ​

In the beginning, we both know that it was a massive shock for you- to go from doing what you wanted each day to then have somebody who relies on you.

Being a first-time dad was tough but for us, it was only going to get tougher.

The day that we found out our perfect boy was going to face difficulties for the rest of his life and never be able to live independently was the day our world came crashing down.

I worried it would get too much for us to handle as a couple and that I would be left to do it all myself.

I stupidly blamed myself every single day for Ryan’s condition, I did not understand how this had happened and I did not understand why it happened OUR family.

In my mind, I had one job as a mum and that was to look after our baby when he was growing inside me and I thought I had failed.

I feared you would think the same. Christopher from that day on you supported me and Ryan and promise me we were in this together.

From that day we continue to work together to bring up our precious son.​

I can not even put into words the bond between you and Ryan. The minute you enter to room or speak to him his face lights up.

It is no secret that he loves his daddy.

There is never a day you get upset about missing all the things a dad and son should be able to do together.

I honestly admire that about you as we both know that it is me who gets down about missing out on the ‘typical’ family things we should be able to do.

You take it on the chin and together we find new things to do with Ryan to make memories.​

There is never a job when it comes to Ryan that you won’t do.

You never miss a hospital appointment, you never miss a day of dropping Ryan off at the nursery.

You go above and beyond to make sure he smiles every single day. ​

Christopher, I now want to end my letter off to you by again saying THANK YOU!

This time I am thanking you for being the dad that Ryan needs, the dad that he deserves, the dad that will forever continue to show him nothing but love.

Love is not defined by someone’s health or well-being and the way you love our son shows this every day. ​

Birthday Traditions

Once Christmas and the new year is over with each year our family get ready to celebrate Ryan’s birthday. On the 12th of January Ryan turned 4.

Having a child who has a birthday so close to Christmas can be stressful as there are only so many gift ideas we can think of.

For us, it becomes even more difficult because in Ryan’s case he does not provide us with a long list of presents that he would like.

If I am 100 per cent honest I do sometimes struggle for gift ideas for Ryan.

He cannot play independently using his hands so a lot of toys on today’s market would be a waste of time for him.

I tend to research and keep an eye out for other toy ideas that he will benefit from. Our go-to toy ideas most years are things that light up makes a lot of noise and have the ability to move.

These toys are normally for a younger age range than Ryan but if these toys make Ryan smile then that reason alone is good enough for us.

This years birthday present was a massive hit and I would even go as far to say its been his best present yet.

We bought him a waltzer car. This is a ride on toy it spins around, lights up and plays music.

We attached his Firefly GoToSeat to the waltzer and it turned from a regular ride on toy to a supportive Ryan friendly ride on toy.

Each year we just have a small get together at home for Ryan and invite all our close family and friends.

I love to pick a theme to base his party around.

This year was a Finding Dory/Nemo theme as it is currently his favourite Disney film.

I bought blue and white crepe paper and made an under-the-sea inspired wall in our kitchen.

I hung cardboard fish between the twisted crepe stripes and set up a table in front of the wall. I place a lightbox on the table that read ‘JUST KEEP SWIMMING’ and added an inflatable Nemo at the other side.

I also always order him balloons to match the theme of his party, I love how happy he is about still being able to look at the colourful balloons for days after his birthday is over.

It feels like its a continued celebration.

Another tradition for Ryans birthday is I always make his birthday cake myself. Before I had Ryan I studied cake decorating at college and went onto work as a pastry chef at a restaurant.

I fell away from my cake decorating when Ryan was first born but I made it our tradition that I would make 1 cake per year and that would be for Ryan’s birthday.

I love to try and outdo the cakes by making it better than the previous year. His Finding Dory cake was one of my favourite cakes to date.

It was an under the sea themed cake with a fishbowl filled with water on top and in the fishbowl was a battery operated swimming Dory.

I love to take as many photographs as I can it is important for me to capture the moments.

As a special needs mum, I try and make Ryans birthday better than he would ever hope for or imagine.

I want to make every single birthday special. Treat every birthday like its the last.

This is the main reason why we do what we do. Every single year is a blessing and another achievement.

A Letter to my Mum

They say that a mother is her children’s first friend, well for me my mum was not only my first friend but she is, to this day, my best friend.

Dear mum, I wanted to write this letter to show you how much I appreciate you.

You have and will forever continue to be my rock. The day I found out I was expecting Ryan you were over the moon, you cried and told me it “was the best day of your life”.

You just could not wait to be a gran to my son.

You looked after me throughout my pregnancy and always made sure I was okay. You made me excited to be a mum. I want you to know that I genuinely could not have gotten through this journey without you.

On the 12th of January 2015, you became a gran for the first time and from the minute you saw Ryan, I knew you had fallen in love. I could tell you were so proud and from that moment, I knew that the bond between you and my son would be something special.

The hospital sometimes became a lonely place. When Ryan was in neonatal, I was in a ward without him. I got to watch all the other mums bond with their babies and I had to watch a nurse care for mine.

I did not feel like I got to properly be his mum, but I understood at the time that the nurses were only caring for him to make him better. You and my dad came to visit me every single day and the feelings of loneliness went away when you arrived because I had my mum.

Fast forward a few weeks on to diagnosis day; The day we found out that Ryan had cerebral palsy.

I came home and I broke my heart crying. You were there to pick myself and Christopher back up emotionally again. You reassured me that it does not matter what diagnosis Ryan has or what a brain scan shows, all that matters is Ryan.

You promised that our special family will always support him through everything, no matter what he needs or what difficulties he may face throughout his life. Mum that is exactly what you have done and what you continue to do.

Mum, thank you for always being there to take over when we are exhausted or for stepping in when things get too hard.

You are so thorough with Ryan’s care, so much so, you were confident that you wanted to learn how to feed Ryan via his NG tube and then his button. That in itself shows you are not fazed by his difficulties.

I also want to let you know how grateful myself and Christopher are for allowing us to have time to still be able to grow up.

From the beginning, at the age of 21 to today, being 25-year olds, we have still managed to socialise and maintain relationships with friends. That is because you have given us time to ourselves by watching Ryan overnight each Friday.

Finally, I just want to say thank you for loving my son unconditionally. I love seeing the look in his eyes when he sees you. I love the sound of his laughter when you give him a kiss and call him your “handsome prince”, also the smile on his face when he is around you.

You were made to be his gran. I honestly hope that I am the mum to Ryan that you are to me because then I would know I am doing the best I can do.