Driving across Europe- Budapest

A couple of days relaxing in Croatia was a must before heading on over to Hungary because we knew there was going to be so much to see and do over the next few days! It took approximately 6 hours to drive from Croatia to Budapest which is where we stayed in Hungary.

We stayed in Budapest for 3 days but we could have easily stayed for more! We could not believe how much there was to see and do, we barely had enough time to eat or drink. Budapest is a great place for families, you can access mostly everything easily with pushchairs. The only attraction that was slightly difficult with a pushchair was the castle because there was quite a few steps with not many ramps!

Buda Castle:

Fisherman’s Bastion is a terrace in neo-Gothic and neo-Romanesque style situated on the Buda bank of the Danube on the hill around Matthias Church:

Széchenyi Chain Bridge is a suspension bridge that spans the River Danube between Buda and Pest:

Matthias Church is a Roman Catholic church located in Budapest, in front of the Fisherman’s Bastion at the heart of Buda’s Castle:

The Hungarian Parliament Building:

Danube Promenade is one of themost iconic symbols of Budapest which has a touching memorial to Jewish victims- with iron shoes. 

Margaret Island is in the Danube River, between Buda and Pest. This is where you will be able to find the Margaret Island’s Water Tower and Margitsziget Water Park:

Margaret Island’s Water Tower:

Magitsziget Water Park:

We know one of the main things to do in Budapest is visit one of their hot baths but we had our 3 year old with us so decided to go to Margitsziget Water Park at Margaret Island instead which was way more fun any way. We found Margitsziget which is a spacious water park which has lots of space for lounging around, many slides, swimming pools and even hot baths- you can easily spend a day here alone!

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Is a Stay At Home Parent a Real Job?

When I was growing up, I always thought that I would be one of those mothers that would have it all figured out. I would graduate, get a job, get married and then have children. The truth is my life didn’t happen that way. I fell pregnant at 19 and didn’t it half take me by surprise.

I can’t lie and tell you all that everything in my life has planned out exactly as it would have done if I hadn’t of fell pregnant. But I am glad. I am glad that I am a mother. I am glad that I mean so much to someone so little and vulnerable.

I have been choosing GCSE’s, A-Levels and Degrees accordingly, since I was 16, to pursue my career choice as being a special needs teacher. Falling pregnant at 19 did not stop me, I finished university and I even went on to do my Masters in the Theory of Education.

We as a family have been through so much over this last 3 years. We have a little boy with a rare chromosomal abnormality that has a huge impact on our life. They barely know anything about it and sometimes it feels like they are using our son as a guinea pig. I struggle to hold a job down because of the amount of hospital and doctor’s appointments we have every month for our son. I have been battling with depression over everything that has been going on and I have recently been diagnosed with Fibromyalgia.

Things out of my control have stopped me from working. I am a driven person and I would love to be out working but at the moment, it is virtually impossible. To be honest, I do not need an explanation as to why I am not working because its our choice. People are quick to judge stay-at-home parents for being too lazy but working parents too have a lot of judgement for leaving their children all day with childminders. You can’t do right for doing wrong. So my advice would be to do what makes you happy.

Quite a lot of people think that being a stay-at-home parent is an easy option for parents that can’t be bothered too work. And i’ll be honest, so did I before I had a child. Being a stay-at-home parent is many things but easy isn’t one of them. It is the most rewarding job in the world but it can be frustrating, challenging and even hard work. Yes I said work. Just remember being a full-time parent is a job. It’s the same as being a childminder, nursery nurse, or even a teacher. We too are helping children develop and grow and be the best they can be- just in the comfort of our own home with our own children. So yes I am living my dream job after all. I am a teacher to my own child every single day.  

Are Doctors Advising That We Shouldn’t Have Another Child?

Our son as you know has XQ28 Duplicated Syndrome which is a rare chromosomal abnormality. At birth, our son was in Neo-natal for his low birth weight, temperature and sugars. During his time in neo-natal, they noticed that his head conference was small. Cut a long story short, this led to the diagnosis of his XQ28 Duplicated Syndrome. 

Since then, we have had a meeting every year with a genetic specialist which supposedly is someone for parents to talk to and feel comfortable sharing their experiences and feelings with.

As mentioned in my last blog, in our first meeting we were told that our son will never be able to sit, crawl, walk and talk. Our son proved doctors wrong and has overcome every milestone to date. We have had quite a few obstacles along the way but that’s what makes our life so interesting! Apart from that we have a happy and healthy growing 3 year old.

Our previous appointment, which was a few months ago, was what really left us speechless. I had so many amazing things to tell the specialist about how much he has already achieved but the specialist didn’t show any sort of interest. He didn’t look at him. He didn’t play with him. He didn’t even ask how he was doing.

The first thing the specialist said was:

“I gather you don’t want another child like Joshua, so I suggest you have no more children. If you do fall pregnant, I will make sure you are able to have an abortion immediately.”

I remember just staring for about 10 minutes in pure devastation at what just come out of his mouth. Not only had our son been rejected from a childminder for having ‘too much challenging needs’ but our own specialist was not even accepting.

Firstly, what exactly does he mean ‘Like Joshua’? If he is referring to the XQ28 then that is just a small part of what he is about. It doesn’t define who he is. His personality is so much more than that. He is loving, compassionate and hilarious. We get the privilege to see these special traits every single day!

I only had one thing to say to that specialist and that was:

“I wish I could tell you it was nice to meet you, but I would be lying. No need to book another appointment in because we won’t be seeing you again. You should be ashamed of yourself”.

I decided from that moment, that we most certainly do not need any appointments that are going to judge our son on what he can and can’t do. We are going to celebrate all the things he can do and nothing else matters. Our society needs to start understanding that every child is different that’s what makes us unique. Wouldn’t it be boring if all of us were the same?

I have been deliberating for weeks now about posting this because I didn’t know whether I felt embarrassed or ashamed. The truth is, I actually feel proud. I feel proud that our son is unique. And I most certainly would be delighted if I had another child like him. Perfect is a very strong word. And that’s exactly the word I am going to use. Our son is perfect. 

Driving across Europe- Lovran

After an incredible time in Italy, it was now time to move onto our next destination. This time it was not only driving to another city but another country. Beautiful Croatia. It took approximately 5 hours from Venice but we drove right through Slovenia which was wonderful.

Ideally, we would have loved to visit Dubrovnik as we know it the prominent tourist place to visit in tourist. However, it would have meant a large amount of driving onto our next destination Hungary. We decided the best thing to do is to write a list of the places in Croatia that did not detour to much away from our route. We came across Lovran which has relatively good reviews which is situated on the eastern coast of Istria Peninsula. Lovran and its near vicinity, makes a part of Opatija Riviera which is becoming an extremely popular place to visit in Croatia.  

We decided that our trip to Croatia was going to focus purely on relaxing on the beautiful local beaches instead of walking miles to visit every attraction possible. So that’s exactly what we did. We stayed in a Villa not far from the main beach in Lovran called Beach Kvarner. We didn’t spend too much browsing photographs of the beach because we just thought no matter what as long as we have sand and sea, that will be relaxing enough.

We somehow managed to skip the part that Beach Kvarner was in fact a concrete beach. However, you would be surprised at how many people were down the beach sunbathing on their towels as if it was a normal beach. Maybe an unpopular opinion: but is a beach really a beach without sand?

Anyway, we did try to blend in with the rest of the crazy people sunbathing- on a concrete beach but it just wasn’t for us. People that don’t like sand- this is the beach for you!

So we did what we do best and explored what else Lovran had to offer.

Firstly, we hopped on a Pedalo which was beautiful but actually quite terrifying with a toddler- never again! Although, we had a fantastic driver (our 3yo), I was very nervous he was going to just suddenly jump in the sea or something- we all know how predictable toddlers can be. So we stayed on the pedalo probably about 20 minutes and then pedalled back to shore.

Lovran’s old town city centre is beautiful. This is where you will find the Romanesque bell tower which is surrounded by walls from the Middle Ages and intersected with cobbled streets and a series of baroque houses.

The Romanesque Bell Tower:

Lovran has the wonderful Lungomare promenade, approximately 12 km long. It took us roughly about an hour to walk to Opatija from Kvarner beach in Lovran. And I would highly recommend this walk if you love beautiful views and of course enjoy walking.

Driving across Europe- Venice

I feel like a sponge with every bit of information I’ve taken in from the wonderful places we’ve visited over these few days already. This time we were heading on over to somewhere I have always dreamt of visiting- Venice, Italy.

Just WOW. I couldn’t believe how magical it was. Such a surreal place to visit, honestly looks like something you would see on a painting.

This is a city made up of 450 bridges and 120 islands so be prepared for plenty of walking because there’s no getting away from it. Expect to get lost at least 100 times because it is just a maze full of narrow and twisted streets. But, it is a place you are not going to want to miss!

For parents, I would recommend exploring Venice without a pushchair if you can. We spent a large amount of time lifting and yanking our pushchair up the millions of steps and bridges that make Venice so beautiful.

Our Top 5 Must See Places in Venice:

The Grand Canal is a two-mile ribbon of water plied by hundreds of water-traffic sweeping in an S shape through Venice. There are many points through Venice for people to hop on a gondola but there is an access point right at the Grand Canal that has an easily assessible ramp meaning that everyone can join the fun- we just took our pushchair on with us!

Rialto Bridge is the oldest bridge spanning the canal in Venice. The bridge consists primarily of steps, making it a challenge for tourists with pushchairs and wheelchairs.

Piazza San Marco (Saint Mark’s Square) is known as the tourist heart of Venice. This is where you can visit the Basilica San Marco (Cathedral) and the Campanile di San Marco (bell tower).

Basilica San Marco is a stunningly beautiful Cathedral with a unique and detailed design.

Campanile di San Marco is the bell tower of Saint Mark’s Basilica. The tower rises 323 feet above the Square containing five bells, topped by lion faces and Venice’s version of Lady Justice.

Driving across Europe- Pisa

Florence, was an incredible place with so many tourist attractions to see. But our next destination was Venice with a slight detour to Pisa beforehand. Pisa is only about an hour away from Florence so what a great opportunity it was to visit it while we were somewhere near.

It would be obvious to jump straight in and tell you about how amazing the Leaning Tower of Pisa was. But first you need to know there are many other impressive places to see in Piazzo dei Miracoli (the square of miracles) as well.

The Duomo Cathedral was the first building to be constructed in the Piazzo dei Miracoli. It is in fact one of the most ornate and impressive amongst all the other Cathedrals you will come across in Italy.

The Baptistery is the second building to be constructed in the Piazzo dei Miracoli and is the largest baptistery in Italy. The structure is almost 55 meters high, which is actually slightly higher than the leaning tower.

But of course, the fascinating Leaning Tower of Pisa. Just wow. With its impressive structure and uniqueness there’s no shock that people are so amazed! It’s ability to still be standing  after all this time is beyond me. The atmosphere around the spacious grounds of Pisa square is insane. You’ll see people jumping, back flipping, head standing, all sorts of crazy things just to get a good photograph with the tower – and of course we just had to join in!

Driving across Europe- Florence

Geneva, Switzerland was incredible. Beautiful scenery with beautiful people. But it was time to move to our next destination Florence,Italy. As soon as we had our breakfast – we were out of that hotel. The quicker the better. No time for tantrums, no time to think about more food and most importantly no time to break anything else. We were out of that hotel before they had chance to charge us for the wonky lamp, wobbly toilet and disconnected telephone, no thanks to our toddler.

Everything was going so well. I was enjoying listening to the same 10 Spotify songs play on repeat for 3 hours; my husband was concentrating on winding in and out of the crazy ass drivers in Italy; and our son was sound asleep, like butter wouldn’t melt. What could possibly go wrong?

Well we were 22 hours and approximately 1,853km away from our home in the North East, UK and the car engine warning light has come on. So what do we do? We did exactly what all normal panicked families would do in that situation. We blamed each other. “You’ve brought us on a road trip around Europe and you have a broken car?” “Did you not think about the risks?”  “Why did you even suggest coming on this flipping road trip in the first place, are you trying to get us killed?”.

We soon came to the realisation that we needed to think logically- and fast! Oh and by this point our toddler decided to have the 386,539th meltdown because he hadn’t eaten in about 10 minutes. Real life problems. But, luckily we located a Land Rover dealership in Milan, Italy not far from the city centre which was approximately 50 minutes away.

We didn’t have enough time to venture right into Milan but we found a cute little café for a quick coffee and toilet break which was all cute until I walked into the toilets.

I remember walking into the women’s toilets and just gazing at the floor for about 5 minutes. I thought I walked into the men’s by accident at first but no I was right the first time. I even debated telling the manager that I thought the toilets needed fixing. But no the toilet was working just as it should be.

I did what all travellers would’ve have done in that moment. I just went with it. Embracing the Italian culture, after all isn’t that what travelling is all about. Guys I present to you- The Squat Toilet.

We picked up our ‘temporary’ mended car – we still to this day will not understand exactly what they meant by ‘temporary’ but our main focus at that time was just getting to Florence. It took approximately 4 hours in total from Milan. Like everywhere, the drive was flowing nicely until we hit city centres.

But we were finally in Florence. A friendly and stunning place. Our hotel was located on the outskirts of Florence but it was only a bus ride or 35 minute walk away from the city centre. We had a beautiful time exploring Florence, it is definitely somewhere I would recommend.

Our Top 5 Must See Places in Florence:

The Cathedral of Santa Maria del Fiore is a 1200’s Medieval cathedral with an iconic red dome:

The Ponte Vecchio is a fascinating medieval stone bridge with jewellery and souvenir shops:

Palazzo Vecchio is a 13th century palace housing lavishly with decorated chambers and ornate courtyards:

Basilica of Santa Croce in Florence which is a Franciscan church known for its Giotto frescoes:

Piazza della Signoria, also referred to as the city heart, is an L-shaped square in front of the Palazzo Vecchio


Driving across Europe- Switzerland

26 days, 4,050 miles and 8 countries. All with our toddler in the back seats.

It’s not something we ever really thought about before, travelling in our own car I mean. But I must say it definitely was a cheaper way of seeing so many incredible places – all at once!

It took a lot less planning than we initially thought. We knew the places we wanted to go and the order that we wanted to visit them in but, apart from that we were real travellers just booking our next stay the night before. Risky but so much fun!

We started our family road trip from our home town Stockton-on-Tees and drove straight down to Folkstone where we were catching the Euro Tunnel to Calais, France the next day. We knew we would need a break after the 6 hour drive as we could not possibly handle another 12 and a half hours on top of that without any sleep. The Euro tunnel takes 1 hour and then it takes 11 hours 30 from Calais to Geneva, Switzerland. So we did, we stopped in Folkstone for the night in a standard Premier Inn. Decent price, clean and friendly! Just what we needed at the beginning of our road trip. 

We had some lovely grub at the beefeater not far from the hotel but apart from that we had an early night because we knew we had a long journey ahead of us the next day. Arriving at the Euro tunnel nice and early the next day was a good idea, it meant that we could grab a nice hot drink which by the way is a needs must before getting on that Euro tunnel. We were slightly delayed so we were sat in our cars a little longer than we should have been.

The Euro tunnel in total roughly took about 1 and a half hours but I was so thankful to finally get of the bloody thing, not good for any one that feels claustrophobic by the way! But we arrived safely in Calais ready for our spontaneous family adventure although not looking forward to 11 and a half hours worth of driving ahead.

We drove through the South of France which had so many beautiful villages and towns that I would love to go back to and visit properly someday! We stayed in Saint-Genis-Pouilly which was a nice enough place to stay. Not somewhere I would particularly recommend if you were staying for a few days as there is very little to do there. But luckily we were only there for the one night using it as a bit of a pit stop really. However, it meant that we got to drive through The Jura Mountains before heading onto Florence, Italy the following day. We even got the see the Mont Blanc- the highest mountain in the Alps.

I can’t go on without mentioning how insanely beautiful it all was. I couldn’t stop taking photographs. Every corner we drove round and every hill we went up, there was me snapping away.

Remembering that we did of course have a toddler with us, we did have to make what felt like 153,049 nappy changes a long the way. I cant remember exactly what we ate during this 12 hours but it was probably every mcdonalds and pizza shop we came across. Our son was very suprisingly well behaved for most of the journey considering it was for what felt like a never ending journey.

But then again, what children don’t love endless amounts of paw patrol and peppa pig. And lets be honest, my son is a mummy’s boy. And that can only mean one thing. He loves sleep. Like really really loves sleep. I didn’t think it was possible for someone to love sleep more than me. So lets be honest and not go on about how easy it was to distract him for 12 hours because luckily for us he found the best distractor of all… sleep.

Back to beautiful Switzerland, I could go on forever about how incredible it was. But, i’ll let you make your own judgements through the photographs we captured along the way.

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Preeclampsia: Knowing the Signs and Risks

Pregnancy was normal at first, just the usual morning sickness and fatigue. 

At 23 weeks pregnant, I felt a change in my body. I spent days in and out of hospital to be told the same again and again,”everything is fine, we can hear the babies heart beat” blah blah blah. But I just knew something wasn’t quite right hence why I just kept going back and back. They found +1 protein in my urine and high blood pressure time and time again, yet they would still send me away.

A very unwell few weeks passed with intense headaches and dizziness. Some days worse than others. I even brought one of those blood pressure monitors for home to keep an eye on my blood pressure as suggested by my midwife. It was always sky high so I thought the monitor must have been faulty or something. I just put it down to normal pregnancy symptoms, after all I had already been to the hospital numerous times.

I got used to the same routine. I had my check-ups with my community midwife who would send me over as an emergency to the hospital for further testing. Turns out the home blood monitor was correct after all. Same old though, the hospital doctors would always just send me back home with the same advice, just a new day “we think everything is fine, come back if you feel any worse”. It was getting more difficult to understand what they meant because every day I was getting worse. They just needed the bed.

At 32 weeks, my measurements were starting to show as abnormal. My baby hadn’t seemed to grow since my 27 week check-up. Again, same old routine. Community midwife, hospital, home. Hours of stress and worry for nothing.

At 34 weeks pregnant after no growth still. The hospital finally decided to investigate further with a scan. Everything cameback relatively normal and baby seemed to be cooking away nicely.

Can you guess where I was at 36+6 weeks? Good guess, back in the same old dingy hospital. But this time was different. I could not even sit in a room with a light on, I couldn’t bare speaking to people because my head hurt that much. My blood pressure was through the roof. The nurse actually said “I’m going to check that again, I don’t think you would be as calm as you are now if it was that”. Shock, same result again. Isn’t it amazing how different someone can look on the outside but actually feel on the inside. By this point my legs and feet were so swollen that they look like they could burst. All I could see was flashing lights every direction I looked. And, feeling the constant urge to just vomit. I remember thinking- honestly if these bloody doctors send me homes as a ‘paranoid parent’ one more time then I am going to scream.

But this time something didn’t feel right. The midwife was barely talking whilst taking my observations and I could see the shear shock in her eyes when taking my blog pressure for the third time.

The next few hours went by in a bit of a blur. I know there was conversations between myself and the doctor about worse case scenarios that I never thought possible. A still born? miscarriage? birth defects? It was too much to take in. One minute, I was being told everything is just perfect. Then suddenly all this. How could this be? Why is this happening? What did I do wrong? Is this my fault?

There it was, at 36+6 weeks I was diagnosed with pre-eclampsia.

Preeclampsia is a condition that occurs only during pregnancy. It usually starts half way though pregnancy (20 weeks). Symptoms include; severe headaches, vision problems, severe heartburn, pain just below the ribs, nausea, vomiting, feeling unwell or sudden increase in oedema (swelling of feet, ankles, face and hands.)

My contractions were intense from the moment they induced me. This was the beautiful moment we had been waiting for to give birth to our baby boy. I always dreamed of having a water birth but it wasn’t long before I was linked to machines galore. Our babies heart beat kept dropping lower and lower. At one point,  I couldn’t even see my birthing partners there was that many nurses and doctors in the room. I finally had an urge to just push. Screaming “I need to push”. The nurse said it’s not possible, you are only 2cm dilated. I had one focus only. That was to get my baby out alive and I already lost all trust in doctors opinions. I remember turning around to the doctor and saying “if I said I need to push, I need to push”. The nurse re-checked and surprise, surprise. I jumped straight from 2cm dilated to fully dilated. So, I was ready to push. I pushed once. There was his head. Then again a second time. And there he was. That’s all it took for our baby boy to come in to our world.

He was placed straight in my arms. His skin against mine. My heart was full of love and happiness. How could I make something so precious? The room felt silent as if it was just me and my son in the room and in that moment nothing else mattered. My baby boy alive in my arms.

It wasn’t long before they took my little boy away from me rushing him to the neonatal unit. Our little boy was alive but in that moment I forgot about how unwell he really was. Low birthweight, low temperature and low blood sugars.

Seeing other parents in the post-delivery wardholding and feeding their babies was heart breaking. Their biggest worry was what time their babies next feed was while ours was if our baby was going to survive.

I guess you’re wondering if he survived? Of course he did. He survived every single high and low we encountered within the next few weeks to come. He’s our miracle baby. He’s our Joshua.

The muscle cramps I had for days after we’re agonising as if I was paralysed and my blood pressure has never been normal since. Doctors are not always right. People need to be more aware about pre-eclampsia. It is life-threatening for the baby and mother. If I didn’t persevere and follow my gut who knows how our birth story could have planned out. Be careful. It’s not just one life, it’s two to think of.

Although most cases of pre-eclampsia cause no problems and improve soon after the baby is delivered, there’s a risk of serious complications that can affect both the mother and her baby. There’s a potential risk that the mother will develop fits called “eclampsia”. These fits can be life threatening for the mother and baby.

Living with Multiple Sclerosis: The Story of my Mum

‘To the world you are a mother, but to your family, you are the world’

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March 2014 mum had us all frantic after being rushed to hospital after losing sensation in the left side of her body, dangerously high blood pressure and intense headaches, all causing her to have dizziness and slurred speech. Mum was either crying in pain with her head between her knees or trying to communicate with us without stuttering.

Mum was emitted onto the stroke unit for a suspected mini stroke. She was sent for an emergency CAT scan to find out the damage the stroke had caused. The doctors explained that the CAT scan showed lesions on the brain. Lesions on the brain refers to any type of abnormal tissue in or on the brain tissue. The doctors were unsure on the cause of the lesions so she was sent for an emergency MRI scan for more answers.

Months later, 1st August 2014 to be exact, is a day I will never forget, it was the day my mum was diagnosed with the dreaded relapsing remitting Multiple Sclerosis (RRMS). We were heartbroken. As, for my mum, she was distraught. Absolutely broken inside. She thought her life was over. We had been living up North for 6 years by this point and she loved it but after the diagnosis all she wanted to do was run as far away as possible. She didn’t want to live here anymore. She didn’t want to be near a hospital that had given her such terrifying and devastating news. So she moved away, my mum and sister moved back down South. I missed her like crazy. I just wanted her close to us so we could support her but when my mum’s heart is set on something, she will do it. We saw her all the time though. If we weren’t visiting her, she would be up North visiting us.

It didn’t take long. Just under a year later, she told us she felt lonely down South on her own and she was moving back home where she belonged. There was something different about her. That smile and positivity that we all know and love was back. She didn’t lose strength by choosing to live closer to family. That decision made her strong. In fact, the strongest women that I had ever met. She made us all proud. She began to accept that a person can still be strong even if they do need a little helping hand from time to time. Having her family around became everything to her. Her family has always been the most important thing to her but we needed her just as much as she needed us.

In a local cafe we like to go, my mum treated us to hot chocolate and a cake. As my mum walked over towards me with the tray of drinks, she looked unsteady on her feet. She accidentally walked into a table and her hand was shaking so much the drinks were spilling, so I got up and helped her. Two old women were shouting “it’s not the place to bring a drunk woman”. I was absolutely disgusted that people could be so rude. What a way to shatter someones confidence.

It didn’t knock my mums confidence though and i managed to persuaded her to come to a threatre show with me. She was unsteady on her feet already so couldn’t manage the flights of stairs to the toilets,  she decided to use the disabled toilets. Some woman in a wheelchair behind her turned around and said “these are the disabled toilets, the normal women’s are up the stairs”. I mean how rude. Just because she isn’t in a wheelchair does not mean she doesn’t have a disability.

My mum has suffered with almost all the symptoms of MS. She’s had optical neuritis, fatigue, numbness and tingling, muscle spasms, stiffness and weakness, mobility problems, problems with thinking, learning and planning, anxiety, bladder problems, bowel problems and speech and swallowing difficulties. Some days are worse than others. Every day is different. MS is unpredictable. My mum always says the key to good health is happiness and positivity. And that she is.

My mum even now attends an MS society and has joined many MS online groups. We never thought she would join anything like these so that’s an achievement in its self. She was sceptical at first but she will now openly admit how much they help. She said that she no longer feels alone and there are many people she can speak to of all different ages going through the same.

No one of our family fully understand MS, but we are all willing to learn. My mum is learning what it is like living with MS. The rest of us, we are learning how to understand MS. Like I said, MS is unpredictable and we have to take each day as it comes.

MS doesn’t define my mum. It is just a disease that is a small part of what she is about.

Every day is a learning day. But, my mum’s confidence just improves day after day. Of course, she has many knocks along the way but she just overcomes everything that she is faced with. She is the best nanny to my little boy and the best mother to the four of us. She is our inspiration. The best mum we could have wished for.

Why Being a Young Mum Didn’t Ruin My Life

‘Being a mother is not about what you gave up to have a child, but what you gained from having one’
 
I’ve had my fair share of comments these last few years. “you have a child?” “OMG, is he yours? but… you are so young?” even friends would say things like “I want to do things in the right order you know like… graduate, then get married and then maybe start to think about children”.
 
I would be lying if I started rambling on about how easy parenting is; how well-behaved my little boy is at all times and how perfect our life is. Yes, I do change a large amount of nappies, yes I do spend some time pretending to be the hulk for my sons entertainment and yes, I have once had to say “yes son, you are right that is mummies boobies” in a lift full of people. But you know what, I wouldn’t change a single high or low moment of parenthood for the world. I have made many mistakes already these last few years but all honest parents, whatever their age will admit they have made many mistakes, more than they care to admit.
 
Once my father said to me;
 
“we always did for you what we thought was best at the time, whether or not that was the best thing, who knows. But you children can learn from our mistakes, and again you will make your own mistakes that your children will then learn from and so on… that’s life”
 
And he couldn’t be more right, whether I was a 15 or 35 year old mother. I would still make mistakes and that’s just life. 
 
There is a big misconception that all young parents have made a careless mistake and have thrown their life away.
 
Let me just get one thing straight. Being a young mother is not a ‘careless mistake’. I would’t be where I am today without my son, cliche I know but very true. My outlook on life is very different to what it used to be. With everything our little family has faced, we have come out stronger than ever. I’ve learnt many things about my self, some things that I love and somethings I dislike. Falling pregnant at 19 did not mean my life was over. My life had only just began, I just didn’t realise it yet. 
 
Yes being a young mother is a huge responsibility and an on-going challenge but so is being a parent in general. But it’s given me a purpose and a belonging. A purpose to be a mother. A belonging to someone who loves me dearly. And most importantly, it is a challenge that I will never regret entering.

XQ28 Duplicated Syndrome: Our Story

When the neo-natal unit took our babies bloods before he left the ward, we thought nothing of it. We were just so excited to finally bring our little boy home with us and start our new life together as a family of three.

At 7 weeks old, just a few days later from his bronchiolitis recovery, we received a phone call from a genetic specialist trying to arrange an appointment to see us. We tried to carry on but the appointment was always at the back of our minds. We knew our son had his bloods taken, so we did not know what might possibly show up. We thought maybe they just want to review our son after his recent discharge from hospital. You always find yourself thinking about the worst case scenario though. But we just didn’t know what could be wrong. We spent the days leading up to the appointment thinking the worst. It just felt like one thing after another. Hasn’t he been through enough in his little life already?

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At the appointment, the genetic specialist told us that we needed to listen very carefully as it is all a lot to take in.

The genetic specialist explained that our son’s blood tests were sent off for genetic testing for a suspected chromosomal abnormality because of his small head circumference. The results found that he has a rare chromosomal abnormality called Chromosome XQ28 Duplicated Syndrome. We had no idea what he was talking about. It felt like he was just throwing letters and numbers at us. It was the most daunting experience of our lives. He told us that it is extremely rare and there is no cure or medication. All they could do for us is offer support and yearly observations to watch Joshua’s development.

As if we hadn’t already been told enough bad news, the genetic specialist told us that it is likely that he will never be able to sit, crawl, walk or talk. He suggested that we prepared ourselves for the worse. One specialist even told us that the life expectancy for Chromosomal XQ28 Duplicated Syndrome is 12 years old. Our hearts shattered into a thousand pieces and we did not understand how life could be so cruel to our Joshua.

The genetic specialist told us that Chromosome XQ28 Duplicated Syndrome affects mainly men as it is the X chromosome affected. The reasons for this is because females have two X chromosomes so the non-faulty X chromosome takes control. Therefore, females usually become just a carrier. As males only have one X chromosome, boys will usually be effected.

Our son currently has asthma, absent seizures, irregular fits, traits of ASD and Autism.

Our son has overcome many milestones that specialist told us he would never.

We were over the moon when he turned over for the first time at just 5 months old…

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He continuously amazes us every day and at 7 months old, he even sat up for the first time…

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He crawled for the first time at 10 months old whilst following his daddy into the bedroom. We couldn’t believe it…

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Tears strolled down our eyes when he walked for the first time at 15 month old…

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We still don’t know what his diagnosis is fully going to mean for his future, but we do know that our son is the most sensitive, caring, compassionate and loving little boy in the world. He could not be more perfect in our eyes. I can guarantee that we are going to have many more obstacles thrown in our way. But we are ready to face them as a family when the time comes.

Bronchiolitis in Babies: Our story

After bringing our son home from the neo-natal unit at just 11 days old, our son became much more alert and was continuously gaining a healthy amount of weight.

After just a few weeks, he started becoming very uncomfortable during and after his feeds. He developed a rash on his neck and was extremely constipated. I spoke to the GP about this, and they suggested to try Infacol as it is most likely colic. We tried Infacol for a couple of weeks but his feeding gradually just got worse. He started to vomit after all his feeds and began losing weight. He developed a persistent cough and his breathing became rapid which was beginning to have an effect on his sleep. He became restless and extremely irritable.

We decided to take him to children’s A&E. We wanted to ask the doctor for their advice about this, as he was now becoming very reluctant to taking any feeds. The doctor sent us away and told us to try some warm water between each feed, which we tried for 5 days, making no difference at all.

A few days later, we noticed that he started to struggle breathing. He seemed to be having to put a lot of effort into each breathe. We knew something was not right. Due to this, we went back to the hospital to find out what exactly is going on.

As the evening went on, his breathing became extremely wheezy and heavy. The paediatric nurse was useless, she carried out very few observations and told us that it is probably just a cold due to the change in weather. We waited hours after hours in an empty children’s ward. He was still only weighing just over 4 pounds at this point as he was born with low birth weight, temperature and sugars.

We waited 3 and a half hours in total for the A&E doctor to come. The doctor claimed that our son was 100% fine and he suggested that because he was born 3 weeks early, he must just have immature lungs and bowels. The doctor even had the cheek to say that we are being paranoid ‘young’ parents. He assured us that we could go home and not have any worries. We were sent home at 3am in the strong winds early hours of the morning. We were very sceptical as we just felt that something wasn’t quite right but again we trusted the doctor because what else can you do.

Our son did not get better when we were home, his breathing just got progressively heavier and heavier. We were driving ourselves mad over this but again decided to take our son back for another opinion the next day. The doctor was brilliant and within 5 minutes after carrying out all her observations, she knew our son needed immediate attention. Our son was diagnosed with bronchiolitis.

Bronchiolitis is a lung infection among infants. It can cause coughing, wheezing, and a hard time with breathing. In severe cases if left untreated, Bronchiolitis can cause death.

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Our son was emitted onto the children’s ward and placed onto a CPAP machine to help him breathe. During this time, we were not able to touch or hold him. It was absolutely devastating.

Every time I saw how fragile he looked just broke my heart. I find it difficult even looking back at photographs as this was such a difficult time for our family. But, we felt so relieved that he finally got the help we knew he needed.

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He had to learn how to feed again. It just felt like one step forward and three steps back. But, of course our litter fighter did it. In fact, he made a full recovery and was able to come home with us a week later. The doctor also picked up that our son was lactose intolerant which explains the vomiting and unusual rashes- he now drinks prescribed Nutramigen milk.

It was a shame that these symptoms were not picked up sooner considering our son showed almost every symptom of bronchiolitis.

Unfortunately our son now has a very weak chest and lungs due to the bronchiolitis and has recently been diagnosed with asthma (aged 2) but otherwise doing incredibly well. But things could have been very different.

Holidays with a toddler

The full airport process is time consuming enough without adding a toddler to the equation, especially a child with an intolerance. By the time the tested/scanned milk bottles have been given back, they are normally half empty and freezing cold. To add on top of that, pretty sure we’ve not had a positive experience yet where the security men/women actually know how to secure the bottle lids properly, so that it doesn’t make all the rest of the food in the bag soaking wet. Just what you need for a tired and hungry toddler right.

There is no such thing as a 10minute toilet or food/drink break when travelling with a toddler. Oh no, it’s more about running around like a crazy family trying to find out what gate your plane is flying from before your too late because security has taken that long to get through. All for what? To sit on the plane for an hour to wait for the calm late passengers dawdling.

Isn’t it really stressful sat next to ignorant passengers that always huff and puff as soon as your toddler makes the slightest bit of sound. I will never know how these people expect families to go on holiday. If that’s not stressful enough, under 2 year olds do not get their own seat space. Instead, they are expected to sit on their parent’s knees. Hours of achy, tingly sensations whilst your toddler is sat on your knees really does do some damage to your legs. Rule out any scheduled walking trips for days after. Maybe try to have a few peaceful days relaxing on a sun bed and reading a book. Who am I kidding? There is no such thing as relaxing on a sun bed and reading a book on holiday with a toddler by your side. In fact, I don’t even think I remember what a book looks like. Instead, there is no other option but to suck up the pain and deal with it.

Parents are able to leave their child’s pram outside of the plane so that they can use the pram right up until they get on. When the plane has landed, parents have to collect the prams from the baggage carousel. I will never understand the reasons for this. Worst of all the luggage usually comes off way before the prams meaning you have to hold your toddler while getting the luggage off the carousel. A big clap from all parents to whosever idea that was.

That’s all before starting your holiday…

For parents they think that it is normally just easier to book a coach or taxi transfer beforehand. We usually do this. It is easier than dragging your toddler on to a sweaty coach with no air-con waiting around for other passengers.

It is always a nightmare when arriving at the hotel for the receptionist to tell you that you have to pay for air-con. When it says air con is available on the website, it actually means available if you are willing to pay for it. For parents, air con isn’t a choice, it’s a necessity. Some hotels do charge a large amount for just air-con in rooms, which I think is ridiculous. So do try to find a hotel that says air-con included, if possible.

Parents always think that as soon as they arrive in the hotel room, the stress is finally over and they can now begin to relax. But it isn’t that easy. Even simple things that you never thought about before you became parents are now an issue. The marble floor is one of the biggest issues about abroad hotel rooms. We’ve had our fair share of slips on these nasty floors. We’ve even been known to have a trail of towels starting from the bathroom right up to the bed to avoid slips after our toddler has got out the bath.

Sitting around the pool can be a slight task for parents. Parents would be lying if they said they weren’t slightly envious of how peaceful the adults looked without children. It isn’t as fun though is it? I mean come on, who wouldn’t rather spend their day running around like a lunatic, getting up every two minutes covering their toddler in sun cream and entertaining them by diving in the pool and pretending to be the incredible hulk.

Parents always think that with a toddler it is easier to go out and about and explore rather than stay in the hotel, however it is still not as easy as it looks. You could fancy a little walk to the shops or supermarket and for some reason us parents seem to think we need to bring our child’s whole life without, as if we are going to get stranded or something. There is no such thing as a quick stroll, it usually takes about an hour to prepare even just a 5minute walk.

Food places are not always easy to find abroad, especially for toddlers that are fussy or have intolerances. We always manage to find our most top rated place in the end though, even if it is judged based on their free wifi so our child can watch pepper pig on the tablet.

Parents would be lying if they said it was easy to take their toddler abroad. However, children soon adapt especially if you travel regularly. Children can learn a lot from going abroad. Whether it is your toddler trying new food, swimming in the sea for the first time or learning to fly without fear.

Good luck fellow parents, your going to need it!