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As Saajan Moves Up A Room At Nursery …

I faced all the typical emotions when Arjun moved up a room – would he be comfortable, would he be ok emotionally, will he gel with his new keyworker? With Saajan, it’s a whole nother ball game.

When Saajan started nursery, I shared my feelings and thoughts on how I felt at the time. Time seems to have flashed by and six months later, i felt he was ready to move up to catch up with his peers. I felt being in the baby room at 18 months probably wasn’t helping him to progress. At the time, he wasn’t crawling, speaking or walking but I felt being around his peers that are doing those things may help and encourage him to do them too. I was right – he’s started crawling quite soon after moving up a room!

But sadly, that decision came with such a heavy price to pay. I hate change. I really do. I struggle with it and I’ve never made it a secret. The smallest change sets me off on an emotional rollercoaster. More so with Saajan in this situation.

By this age, Arj was a lot more vocal, he was a little more independent. I don’t want to write off how much Saajan HAS achieved and actually the fact that he’s quite a people person really helps, but I worry. I worry a lot.

When he joined nursery, the staff and room manager had left it up to us/him to decide who the right key worker would be for him. Who he’d develop a rapport with himself. It was quite quickly obvious that he took a shine to Ashleigh and the feeling was definitely mutual.

Since he started nursery, Ashleigh has had patience, perseverance and so much enthusiasm with Saajan. She has worked so hard to help him develop and has always been so excited and vocal when he achieves a new milestone – however tiny it may have been. She’s always been proactive in understanding Saajan’s additional needs – eg the right consistency for his fluids (he’s an aspirator), or understanding his sensory needs and having patience to try and work through them rather than avoiding them. She’s provided us with so much feedback which gave me so so much reassurance on knowing that Saajan was ok.

 

As he moves up a room, I can’t help but feel nervous. Any change is always tough for me – the room is much bigger, much busier and obviously it means new staff. They’re all lovely and his new keyworker also has an interest in working with children with special needs but I still can’t help but worry about him becoming a little shadow while all the other kids are running free, he’s still confined to the floor. While all the other kids are speaking away, he’s still only babbling.

It’s not often you find people with such a passion and true love and I wanted to show my gratitude to Ashleigh for holding our hand and for being so amazing and making it so easy for me to relax when handing over Saajan’s care to someone outside of the family for the first time. We are so grateful! x

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To Our Extended Family … The Staff at The Boys’ Nursery

How is Arjun on his way out of nursery and in to school already? I remember when he first started … Today was Arjun’s graduation – it was emotional. Really emotional. It signified so much for me, it doesn’t only signify a new beginning and the end of a chapter, it was a chance to reflect on how far he’s come as an individual and it really hit me hard how much he’s been through and how grateful I am to the support system we have. As I reflect on how much we’ve been through as a family these last 3 years, the boys’ nursery have very much had a strong presence in it. It’s true that God puts you in a situation but always ensures you have the right people around you to deal with it. I don’t know what I would have done without the management and the staff at the nursery.

They have held our hand on so many unknown journeys. From when he first joined nursery to when I fell pregnant to prepping Arjun in becoming a big brother, to facing the heart ache of watching his baby brother poorly at times. To comforting me when Saajan was born to helping put things in place to ensure he was also ok.

They didn’t do their bog standard job, no, they went over and beyond. They take Arjun to see Saajan most days at nursery – they understand his emotional needs. They care.

I couldn’t help but well up looking around and seeing the room filled with pictures today – the amount of effort the girls put in to their leavers assembly was a reflection of them – how they go over and beyond to make nursery a happy space for the children while dealing with all the crazy emotions and antics of 3/4 year olds! It can’t be easy.

I really took for granted how much the “little things” you girls did – Who will make all our personalised hand print cards on those all important occasions? We always received cards on mine and Preetam’s birthdays from the boys without prompting the girls. They always made the effort to know our family. So much so they have become like family.

I worry about Arjun when he starts school – it only dawned on me the other day when he had a settling in session at his big school how different it’s going to be. Who’s going to be there for extra cuddles when Arj is having a rough day or is feeling a little anxious because he noticed Saajan wasn’t quite himself the night before? Nicole, Arjun’s keyworker, has literally been like my right hand woman when it came to Arjun’s mental health and his wellbeing. She always makes time to speak to him if she knows he’s not been himself at home – ensuring she checks up on how he is – if anything is bothering him. He already tells me he wants to keep the same teachers he has already.

I don’t know what I’ll without them and I don’t know what I will do without them in Arjun’s life. It’s been so comforting to know he has a happy and comfortable environment at nursery as they truly have gone over and beyond for us – to provide me feedback at all hours, to reassure me and to work with me to try and manage situations. No amount of words can ever express my gratitude as a mother.

Arjun often comes home sharing stories about his teachers – how much he loves Emma, how worried he was about Nicole when she wasn’t feeling well, how Ashling has a baby in her tummy, how Bethany is one of his favourites and how Caitlin is really kind. 

I look at my little boy today and how much he’s grown over the years, how much he’s developed. How much he’s had to endure, how resilient he’s had to become. He was described by the staff as “caring and compassionate” – I’m so proud to be his mummy. His life experiences haven’t always been easy but his support system has shaped him to be the little guy that he is today – caring and compassionate are definitely words i’d use to describe him (amongst many!!).

How he walked out with confidence and waved at us during graduation and how he was that kid that cried at every Christmas play (apart from last year!) to the confident little boy I saw today. Nicole, Emma, Bethany, Caitlin, Ashling, Laura, Rhianna and all the other girls that have helped him on his journey – a lot of that is to do with your hard work and patience. Coaching these little humans and pouring your heart and soul in to helping them figure life out.

I’m amazed at the job you do and really am so so grateful. Thank you for walking my motherhood journey with me and for holding my hand and supporting my son when I couldn’t always be there for him. I well up anytime I think about it – We will miss having you as his teachers more than words can express!

God bless you always and thank you, thank you, thank you!

Harps x

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The Reserve at Paradisus Punta Cana – Celebrating Our Baby’s 1 Year Healthy Heart Anniversary | Review

This time last year we handed over our innocent little guy to the hands of a surgeon we barely knew. Watching him being put to sleep – him none the wiser, was heartbreaking.

Open heart surgery … on our baby.

Something I couldn’t have even imagined in my most scariest nightmare. The thought of your child having a defect that would eventually cost him his life is terrifying. We’d had to cancel our holiday to Punta Cana at the last minute when we had suddenly found out about the defect which required surgery immediately. A holiday which signified so much for us at that time – it was meant to be the start of the rest of our lives, finally beginning to accept his Down syndrome diagnosis. That was also ripped from beneath us. Life felt really unfair this time last year.

At that time, I couldn’t even bring myself to look to a year ahead – I was terrified that Saajan may not even be with us.

As I sit here, and write up this blog post today, I’m so grateful for everything. We weren’t able to go last year, but we were able to go on what was our dream family holiday to Punta Cana this year!

We decided to mimic the exact same holiday we’d booked last year for this year. The management at the hotel were incredibly helpful and knew our story as we’d planned our entire holiday before having to cancel it three weeks before we were due to fly due to the devastating news of Saajan’s heart condition. Luckily we never boarded that flight as it could’ve been potentially fatal for Saajan.

We’d heard amazing things about The Reserve at Paradisus Punta Cana through trawling the internet and reading reviews – what particularly drew me to the hotel was how great it is for kids and I really wanted that for the boys. This trip was ALL about the boys.

Gatwick Airport and the British Airways Lounge

We flew with British Airways as it’s a direct flight from Gatwick to Punta Cana. Having done stop over flights for Thailand and India earlier this year, I quite fancied a direct flight this time. At the time of booking, I was quite apprehensive about the flight time (11am departure) as it was a day flight and I wasn’t sure how the children would be.

As I’ve mentioned previously, Gatwick has really great services for children – there’s a fast pass queue through security when travelling with children and there’s also a play area for children.

The British Airways lounge was pretty average though I think Virgin have set the bar on lounge standards! They have a kid’s area which was good for older children but Arjun had fun playing his own version of table football with his daddy!

The Flight

The boys were really good considering it was a pretty long flight. Arjun was entertained by his bag that I’d packed, and there were so many of his favourite films on in the inflight entertainment system. He also enjoyed playing games. All of that after exploring his toiletries bag of course.

Saajan was great too. He had a couple of naps, happily played with his toys and was entertained for ages by the inflight entertainment remote! Haha! We had fun playing peekaboo too and he loved watching his nursery rhymes programme which we often watch at home – luckily, they had it on in the inflight entertainment.

We’ve not travelled with British Airways long haul before and I was a little disappointed with the lack of enthusiasm with some of the cabin crew. Emirates, Virgin and Etihad were all excellent with children and general proactiveness. With British Airways, there was no acknowledgement of the children and also several members of staff would walk past seeing our trays full from empty glasses or food but would leave it lying there till you asked reluctantly half an hour later. Not really the same service at all as the other airlines, especially considering it was Club class and they could see us dodging a tray of food with a handful toddler.

On landing, we exited the airport pretty quick. Our transfer which we’d booked through the hotel with a company called Otium was ready as soon as we got there. It was a nice spacious large car armed with a car seat for Saajan.

The Reserve at Paradisus Punta Cana

The Reserve is a separate area within Paradisus Punta Cana especially for families. The area includes a kid’s pool and a Kids Zone. The Reserve also has it’s own exclusive restaurant, The Gabi Club, for Reserve residents only. There is also a private beach area specifically for The Reserve residents.

If you know us at all, we love luxury and sometimes when going on a family holiday, it feels like you lose an element of luxury. Long gone are the days where I’d search for adult only hotels! Now, it feels like we have to find some compromise. This was the first hotel which really catered to providing a luxury holiday as a family – really taking note of the “family” element without comprising the luxury element. The Reserve at Paradisus Punta Cana offers extra comfort, privacy, luxury and service. The perfect option for those travelling with the hope to live the perfect family holiday.

If you book in at The Reserve, you’re taken directly to The Reserve reception and lobby area for check in. The staff were so quick and courteous. There’s an assortment of snacks from cornflake clusters to crudités to crisps and sandwiches – great as a post flight snack for a hungry toddler and child!

In addition to residing at The Reserve, our holiday was upgraded to The Family Concierge service offered at The Reserve at Paradisus Punta Cana. This service provides a very personal touch and attention to detail.

We resided in room 2141 – in the Family Concierge building where the lounge area included snacks, a TV and wooden toys to keep the children entertained while we attended to grown up matters.

Our Reserve family concierge point of contact was Jhordan who was absolutely amazing from the get go. He was so helpful, warm and eager to ensure we had a fab stay. Jhordan gave us his mobile phone number so that we could communicate on what’s app – the easiest mode of communication.

Your family concierge is there almost as a right hand man to ensure you have a cabana or sunbeds reserved by your pool of choice (kids pool or the Reserve pool), make dinner reservations for you, plan excursions and any other special requests you may have. For example, prior to arriving, the hotel was aware that we were vegetarian – the day after we landed, Jhordan arranged for head chef, Miguel, to come and meet with us to discuss our preferences. We were really impressed with this and the food service we received thereafter food wise.

As part of the family concierge package, children are also provided with Paradisus kids kit including little bath robes, toiletries (including a mosquito repellent) and their own sand bucket and spades set. Arjun was ecstatic!

The mini bar is personalised based on your likes – ours was replenished daily with cartons of milk for Arjun, Lays crisps and crackers – not the healthiest snacks but we were on holiday!

There are also PS4, Xbox and Wii consoles available on request however we didn’t require these as Arjun is still quite young and enjoyed being outdoors!

Prior to arriving, I’d requested a steriliser, a stool for Arjun and a cot – all of which were ready when we arrived. Cleybi was the housekeeping supervisor during the majority of our stay and her attention to detail was fantastic. She went over and beyond by providing Arjun with his own double bed instead of a sofa bed for extra comfort, ensured the room was clean both in the morning and at turn down service. When we requested the extra cushions to be removed from our bed, this was granted and our request for extra towels was provided daily without reminder. Cleybi was on her days off for the last two days of our stay and their was a noticeable difference in service – the room wasn’t tidied in the evenings and we had to request extra towels. Her service was impeccable and so personal – she really prides herself in going over and beyond and she really should! We’ll always remember Cleybi for how helpful she was.

Every evening your family concierge leaves homebaked cookies for the children with a cute inspirational message. Preetam and I especially loved tucking in to those!

While we were in Punta Cana, it was Saajan’s one year healthy heart anniversary – a year since we handed him over to a surgeon. We wanted to mark the day and celebrate his life. The hotel were aware of this special date and on his anniversary, Jhordan surprised the children with a room filled with balloons and a cake and the most special note as well as with a balloon bubble bath. They were both ecstatic and we were so touched by the sweet gesture – we’ll always remember his first healthy heart anniversary thanks to Jhordan.

The Master Bedroom Suite

Our room was upgraded to a one bedroom master suite and as we entered, we were instantly wowed by the beautiful décor and the space! It was definitely the most practical room we’ve ever stayed in.

The master bedroom comprised of a king size bed with a sliding door to enter the huge master bathroom which included a huge Jacuzzi bath tub and two sinks where I stored my toiletries and make up. Following on from that bathroom, there was another bathroom comprising of a separate toilet cubicle, a shower cubicle and a third sink where Preetam stored his toiletries.

The master bedroom also included an iPhone 7 docking station which made charging my phone super easy!

The suite also comes with a kitchenette which made managing Saajan’s bottles and the kids snacks so easy! I loved having a designated area which included a separate sink to easily wash and sterilise his bottles.

The main lounge area included a dining table and sofa area. This is where Cleybi had also set up Arjun’s bed and Saajan’s cot.

I loved the marble effect lamp bases and lamp shades, the deep oak wooden furniture and the luxurious marble tops.

Our room was a pool view room. No rooms at The Reserve offer a sea view sadly!

The Pools

We didn’t end up using the main hotel pool as we didn’t feel the need to. We ended up residing at the same cabana which Jhordan reserved for us each day most days. It was really nice to have the same space each day as we knew exactly what to expect.

The pool wasn’t crowded at all and even without reserving sunbeds, we could quite easily have found some.

There is frequent pool side entertainment – you can find a schedule of activities quite easily on the Melia app which you can download for free.

I participated in paddle yoga with Eddie and a Christian – it was so much fun and they were pretty patient with my inflexibility! Haha!

Preetam and I also participated in a candle making class which was so therapeutic. Jose Cappuccino was our teacher and he definitely doesn’t fall short on the entertainment factor! He’s absolutely hilarious and full of life!

I also took part in pool side Zumba with Cappuccino – it was so so much fun! I don’t usually participate in adult activities when on holiday, but the pool side staff here made it so fun and inclusive and I’m so glad I did!

Jose by the pool side was always smiling even in the sweltering heat – he was so kind and helpful and all the pool side staff got to know our daily request of an ice bucket filled with water and would have it ready before we even requested it. The staff were always great at providing us with the tastiest mouth watering fruit platters too! We often had coconut water which was cut straight from a tree and prepared before our eyes. Doesn’t get fresher than that!

There is a swim up pool bar where you can enjoy hot and cold drinks – we also attended a fresh fruits drink experience here which was quite cool. Again led by Cappuccino’s commentary.

There is a pool side bar called Hydro Grill for food including pizzas, burgers and salads but to be honest, the quality of the food is really poor. I wouldn’t recommend it though the staff are lovely!

The kids pool features three slides in the shape of animals and is situated next to the Kid’s Zone.

Kids Zone

The Kids club at this resort was absolutely fantastic. It got super-hot during the midday sun and it was so helpful to have such fantastic kids facilities. We’ve never really used the kid’s clubs on previous holidays as they usually require supervision under the age of 4. This Kids Zone welcomes children from 1 years and you don’t need to stay with them. The facilities and services were brilliant and it’s open from 10am-10pm.

They have a baby zone which is pretty much the same as a nursery – it’s kitted out with practically every type of toy you can imagine! Soft play to ball pool to car tracks to light up toys. Both boys were so happy to be there! There is an indoor crafts area, a television area, an outdoor crafts area, table football, table tennis, air hockey, and table football for the older children. There is also an outdoor climbing frame for older kids and a smaller play area for toddlers. The best part – they have a gardening area equipped with shovels and rakes and watering cans! If you know us at all, you’ll know Arj is Mr Green fingers!

Joanna reassured us they’d take care of Saajan and that Arjun would also be ok. It was empty and they pretty much had one to one care. Xavier and Jafriesy were also especially great with Saajan. All the staff told us how much they’d miss Saajan – they really took a shine to him. Saajan attended every day during the midday sun, mainly for a nap and Arjun attended a few days where he enjoyed colouring in, a cupcake decorating class and swimming in the kids pool with Xavier. Saajan especially took to Joanna and I felt reassured that he was in good hands.

There is a separate room for nap time which is a dark room and has two cots so Saajan was comfortable.

Beach

The premises are pretty large with gorgeous gardens – perfect backdrops for those all important shots! If residing at The Reserve, it’s about a 7-10 minute walk to the beach. Alternatively, there is a very frequent buggy service that runs about every 15 minutes from several locations which can taxi you to and fro.

 

Though from afar, the sea looked stunning as you’d expect of the Caribbean, on closer inspection, there was a LOT of seaweed present which may be due to the time of year we visited. The day that there was a smallish amount of seaweed washed up on to the shore, there was A LOT in the sea – I didn’t particularly enjoy going in the sea as I was paranoid about being attacked by a sea snake and anytime seaweed caught my leg, I panicked! Haha! The day there was lots of seaweed washed up to shore, the sea was a lot more pleasant to swim in!

There is a separate section for The Reserve residents for sun loungers at the beach and there are plenty of them though if you don’t get to the beach early enough, you miss out on the sea front ones!

There is a bar at the beach so you can access lots of refreshing drinks.

Excursions

We decided to take part in a buggy excursion and took Arjun with us – it was a really fun experience but Arjun wasn’t keen on getting dirty, so Preetam was careful to dodge all the puddles! The excursion included a stop off at a Cave where you’re able to go for a quick dip – pre warning, the water is very cold and quite deep!, the coffee and chocolate plantation where you get to have a taste of the gorgeous hot chocolate and finally Macao beach – absolutely stunning, crystal clear blue water with a gorgeous backdrop.

 

 

Dining

The package we booked was all inclusive. Our bill at the end of the stay was $60 purely for items we’d purchased at the hotel shop! My perception of an all inclusive was based on our holiday in Jamaica a few years ago – I assumed we’d be surrounded by empty plastic cups which were once filled with booze and that the quality of food would be low. Oh how wrong I was!

There are over 13 restaurants on the Paradisus Punta Cana property and they’re all included ranging from buffet restaurants, experience restaurants to buffet restaurants. Though the quality varied across the restaurants, overall, we were so wowed by the amazing value for money we received. You can view the restaurants menus on the free app and as mentioned, your family concierge can arrange your dinner reservations for you.

The all inclusive package also includes room service though we didn’t end up using it even once surprisingly!

All the menus offer a separate kids menu which is the same around the resort.

As mentioned, Chef Miguel came to meet us the day after we arrived and ensured we were catered for throughout our stay. They made us bespoke meals such as a vegetable lasagne, vegetarian steak burger and lots of salad options which we were so grateful for. He ensured he communicated our dietary needs to each chef at each restaurant. Miguel would often come to greet us at meal times to ensure we were ok and to see if he could provide us with anything else. We were really impressed by this as when we visited the Lopesan Baobab, it wasn’t quite the same – here they were a lot more accommodating with providing cauliflower cheese without the bacon bits if we asked 😉

Breakfast: we had our breakfast daily at the Gabi Club. Though not a huge spread, we both agreed it was sufficient and the food they did serve was delicious – my daily Punta Cana vegetable and chili filled omelette was by far the best I’ve ever had and the fresh fruit was absolutely divine.

Gabi Beach Buffet: Though the views were beautiful at this restaurant, the food was quite limited for vegetarians – we went here on our first night prior to meeting with Chef Miguel. The English of many of the staff was quite limited so it was difficult to communicate out needs. It’s a buffet restaurant and though they had Indian food and baked potatoes, it wasn’t our favourite restaurant options wise.

 

Mole: Jhordan had arranged for us to visit Mole on the day of Saajan’s healthy heart anniversary and he couldn’t have chosen a better restaurant for the occasion. Mexican is one of my favourite cuisines and the staff at the restaurant were lovely! Lisselot was our main waitress and she was so warm and friendly especially towards the kids. The head chef from the restaurant came to meet us when we arrived and made us a custom meal comprising of vegetarian enchiladas, fajitas and quesadillas. The kids had cheesy quesadillas and fries. We really enjoyed our food and experience here!

The Grill: This is a steak house restaurant and is quite busy. Chef Miguel had especially arranged for us to have a veggie burger which was absolutely delicious! The vibe was really chilled out here. Though the main burger was nice, the sides weren’t as high quality. The service was a little slow and unhelpful at times but it may well just have been that our waitress was having a bad day.

Aqua: This is an Italian restaurant in an elegant setting. The food was really tasty and was made just as I requested off the menu – a penne pasta in a garlic and spicy sauce with lots of vegetables (true Indian style haha!). Arjun really enjoyed the food and our waiter Ramon Jimenez was really great at ensuring we were taken care of.

Gabi Club: We had one evening meal at the Gabi Club where we were made a delicious smoked aubergine lasagne. They also prepared a special dessert for us as a surprise – a chocolate melting box cake. It was delicious!

Bana: Our final dinner was at Bana, a Japanese restaurant where they prepare the food live. It was an interesting experience dining with others but a pleasant one! Though the vegetable tempura and sushi weren’t great, the fresh vegetable stir fry and egg fried rice was delicious!

Evening Entertainment

Every evening there is entertainment, however we always ended up falling asleep early due to jet lag! We did however make it to a acrobat performance on the beach on evening which both boys were wowed by! And also to the final evening of entertainment of The Lion King – I was blown away by the efforts of the pool side and kids zone staff for putting together such an impeccable show! The boys were absolutely hooked as were Preetam and I!

Our verdict

We had an absolutely incredible time at our stay at The Reserve Paradisus Punta Cana and we are already planning our next vacation! It was a holiday of a life time with many amazing memories that will last us a life time. It was the perfect setting for a relaxed family holiday with support from our family concierge and the kids club but also oozed luxury. We will definitely be returning and to date it has been our best value for money holiday. My only real complaint being that I was savaged by mosquitos one day – everyone else was ok! It must be my sweet blood 😉

Disclosure: This is a sponsored post in exchange for a product or service. However all views expressed above are my own.

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Entertaining a Toddler in Flight – Packing Ideas

I don’t think there’s any parent out there who isn’t overcome by a wave of fear at the thought of flying long haul with a little person. You never know what mood they’re going to be in and how “good” they’ll be. Let’s face it, riding for 8 hours plus being confined to a small space is a bit crappy! Arjun will happily watch an episode or 2 of something on the in flight entertainment, or play a game on the iPad for half an hour and then he’ll get bored. So arming ourselves with plenty to keep him entertained is super important!

We invested in a travel bag for him which comes with a fold out tray – perfect for holding little pieces in a confined space rather than sliding around on an aircraft table where it’s likely to slip!

 

On our latest flight, this is what I packed:

  • A mini play dough set – I found this at The Works for a bargain price of £3. It comes with 3 pieces of play doh, some cutters, a rolling pin and a little carry case. I purchased an additional set of play doh from Poundland. I’d highly recommend The Works for cute little activity sets.

  • Lego – can’t go wrong with endless amounts of imaginative play with building cars to houses to stairs! I just take a few pieces from home and pop them in a freezer bag for transport
  • Mini puzzles – we’ve taken two – a Cars one and a Paw Patrol one. We got them from eBay. Again the travel bag is great for having a little space to ensure the pieces don’t slip out.

  • Play doh wipe clean book – to practice shapes and again you can reuse the book by wiping it clean.  It also comes with cutters which Arjun can use with his play doh.
  • Aircraft set – we purchased it on our last flight and Arj loves playing with the little transport models
  • Mini Chinese checkers set – a bargain price of £1 from The Works!
  • A magazine – this time we’re taking a Transformers one which includes stickers.
  • Gel window stickers– for him to place on the windows in the plane by his seat
  • Counting book – if he wants to study!
  • Mini food cutting set – Arj loves pretending to cook and this set that I purchased on Amazon is brilliant. It comes with pieces of food velcroed together and he uses a knife to prize them apart. He loves pretending to cook for us.

  • A plain drawing pad to make his own pictures

Arj is pretty obsessed with aqua beads at the moment but I figured it wouldn’t be sensible to take tiny beads on a plane – I’ve had the pleasure of having to clear them up at home and it isn’t fun!

Any tips on what to pack?

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Our India Medical Packing List for Grown Ups and Children

I had a few messages following on from our India trip re what we took to cover all bases. It’s funny how so many of us have a mini freak out at the thought of going to India and getting sick where actually it really isn’t that bad at all. Plus getting deli belly means losing a few pounds 😉

Jokes aside, I was quite nervous as Saajan has a pretty low immune system and it was also Arjun’s first time visiting our motherland. I was so so excited to take the kids but I wanted to ensure we covered all bases. I spoke to a few friends and family and gathered together a list of the things we should take just incase. I’ve shared the list below and hope you find it helpful.

Thankfully, we didn’t have to use any of the medicine we’d taken. Do you take anything in addition?

  • Milton wipes
  • Antibacterial hand gel
  • Disposable toilet seat covers
  • Childrens plasters (with their favourite print to calm them down if they take a fall!)
  • Baby vicks
  • Baby Nurofen
  • Calpol
  • Baby piriton
  • Anbesol teething gel
  • Nasal saline spray
  • Nasal sucker
  • Thermometer
  • Calamine lotion – works great for sun burn
  • Mini first aid kit
  • Dirolite
  • Jungle spray
  • Kool n soothe packs
  • Savlon
  • Lozenges
  • Blister pads
  • Anti histamine
  • Plasters for grown ups
  • Germolene
  • Grown ups Nurofen
  • Paracetamol
  • All in one cold and flu tablets

We also packed a few Robinson’s Squash’d to keep the kids fluids up.

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Mental Illness & Me – A NICU Mum | Guest Post

While you’re pregnant, you never really imagine the prospect of your little one being whisked away to NICU.  I never did. My pregnancy was relatively ok and I didn’t for a second entertain the idea. Saajan ended up staying in NICU for four nights due to low blood sugar.  I was so confused by the diagnosis, coupled with my baby not physically being with me, it was my lowest of low time.

 

Below, fellow NICU mum, Vicki, talks about her journey as a NICU mum, her baby being born with an unexpected heart condition and the impact it had on her mental health.

 

When I found out I was pregnant with my eldest, I enjoyed 9 months of preparing the nursery, rubbing cream in my growing bump and wondering what he would look like.

I was determined to right all of the wrongs of my past with being the best mother I could be.

After a good birth, I met my son 8 hours later and 12 hours after that I was facing the worst time of my life.

My son was born with an undiagnosed heart condition and was fighting for his life in need of surgery.

For 9 days I watched as someone took care of my son, I was present and functioning but it was as though I was watching someone else go through this.

Very early on (whilst in hospital) I began to deteriorate mentally. I began to skip meals and abuse the pills I was on.

In the first year of Elijah’s life that steadily got worse. There is no support system on offer when you have a baby in NICU.

You adjust to NICU life and then if your lucky to be discharged your sent home and expected to get on with your life as if it never happened.

But it did.

The flashbacks, nightmares were too much, and we still had a surgery to get through, 18 months after Elijah’s birth I was diagnosed with PTSD.

The whole of Elijah’s first year I was spent spiralling and hiding what I was doing to everyone.

I became lost, I hide away not wanting to be the mother of the ill baby.

Surgery was three years ago now, and Elijah is a healthy and happy little boy.

The NICU flashbacks came back when I fell pregnant a second time and began to fear it would happen all over again. That we had to go through everything a second time. I didn’t think I was strong enough to do it again and as a result didn’t enjoy my pregnancy. Once again I was depressed but too scared to tell anyone as it was supposed to be a happy time right?

Ante natal depression is something we don’t routinely discuss.

Harlow was born after a very quick 50 minute labour and I spent so much time comparing the two experiences I developed post natal depression.

It is the most depressed I have ever been, and I was suicidal at numerous points. I got help very early on but the pills masked over it for a while it is only now 10 months on and in therapy I am facing all of the issues head on now.

Once that should have been dealt with and fixed all those years ago in NICU.

This is why I am launching a campaign for demand change and funding for a dedicated system to be out into ever NICU ward for better mental health care for NICU parents. For them to be assessed and have follow up care after discharge. To avoid like so many of us to still have to face these issues years down the line.

I began my blog when Elijah was 18 months old as a way to process what I had been through and have openly confessed to all of my mental health struggles in hope the more we talk, raise awareness the more we can normalize mental health issues.

For months, even years I was ashamed to go get help. Fearful they would take my children away and I let it fester worried I was a bad mother, that I wasn’t normal.

I spent three years constantly living in NICU in my head, never processing it, never dealing with it and letting it affect so much of my life when I should have been enjoying the fairy tale of motherhood I had first dreamt about.

I won’t get that time back and it is hard to reflect on the times I was so low I thought my family, my boys would be better off without me. But in sharing my story, and in launching the campaign I hope that it means that others may not have to go through what we did, as they will have the access, knowledge and confidence to help.

 

 

Vicki Cockerill is a NICU/ CHD Mum of two boys, a freelance blogger and social media adviser, Co-Founder of #knackeredandNorwich social club and maternal mental health advocate.

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My Birth Story … Before I Knew – Dedicated To All Midwives

It’s international day of the midwife today … where do I even begin?

When I was pregnant with Arjun, I was in and out of hospital as I was monitored weekly due to my hypertension. Though it was a right pain in the bum, by the time I was due to give birth, many of the wonderful midwives felt like family by then! I remember a few of the midwives going out of their way to come come and check up on me while I was in labour (my blooming 84 hour labour) – visiting me from Triage and ante natal just to see how I was doing. I was truly blessed to have encountered some of the most beautiful and loving souls – I truly do believe it takes a special kinda person to be a midwife.

During my pregnancy with Saajan, as I’ve shared, it was tough. Really tough mentally. Claire literally held my hand through it. A midwife that I’d met years back but that still kept a small place for me in her heart.

I’ve never shared my birth story of Saajan because it’s too painful to do so. But tonight, I’m sharing the notes that I’d typed up as I lay waiting for my c section on the blog. You can see from everything I’d written how happy I was and how perfectly I thought things were working out prior to giving birth. The fact that the warmest and friendliest faces from when I’d had Arjun were there – Danielle and Manjit were there to welcome me. I felt instant relief and comfort seeing their faces. It all felt like Gods plan.

I didn’t get to finish writing as my pain intensified but Danielle didn’t end up coming in to theatre with me as there was an emergency section that ended up going before me and I didn’t end up delivering till much later by which time she’d finished her shift and had to leave as she had an appointment.

From the midwives that did end up coming in with me, to the midwives that saw me through my pregnancy with Arjun, to the mental health midwives that supported me during my second pregnancy, to the midwives that assessed the situation and the rules to make sure we were ok, to the midwives that went out of their way to try and support us – even when they had no words, they were just there, to the midwives that continue to check up on me – I love you from the deepest part of me. Because you cared. You care. Even when I’ve struggled to talk, or haven’t been able to process my own feelings, I know you’re there.

I remember the sadness I felt walking back for our first appointment in the maternity wing at the hospital after we’d had Saajan – it was the polar opposite to the feelings I associated with that building just weeks before. But I remember being greeted with a wave of warmth by so many familiar faces – many of which I didn’t even know their names, there was literally a queue of 6/7 midwives waiting to see us to see how we were doing. They cared. It was a reminder that the new feelings I now associate to the maternity wing at the hospital the boys were born at, aren’t the same feelings I feel for the people that carried me through.

A huge thank you to all the midwives near and far, especially the ones that have held my hand through my motherhood journey, especially Claire and Danielle.

 

 

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Little Tikes Bring Back the Outdoors | Review

If you follow my insta stories, you’ll see that last Saturday we attended a fabulous Little Tikes event in Hyde park.  We were fortunate enough to be invited to the wonderful event for their Bring Back the Outdoors campaign. The weather was absolutely delightful and it made the day even more fun!

Little Tikes conducted research on outdoor play in today’s day and age surveying 2,000 parents with children aged between 2 and 16. Here are some of their startling findings:

  • 42% of parents have heard the excuse that it’s too cold to go out
  • 1 in 4 say their little ones have been too tired to leave the house
  • 1 in 10 germ-conscious kids have even said they’d rather stay indoors to avoid getting dirty or touching germs.
  • 30% of kids have been too lost in a videogame to get some fresh air and 24 per cent have asked if they can stay in so they can watch their favourite TV show.
  • 10% frequently bribe their kids to convince them to leave their devices behind and play outdoors.
  • 45% have had to get persuasive with their little ones at some time or another in the past in order to get them out of the house for a runaround.
  • And 11% have told their parents they are too scared to go outside at one time or another.

Parents estimate the length of their child’s average play session outdoors lasts 47 minutes. When Arjun does go outdoors, he can be out there pretty much from morning to evening but keeping him busy is key.

Arjun has definitely always been an outdoorsy kinda guy – don’t get me wrong, he does love a bit of screen time, arts and crafts and cooking but he’ll take playing on his bike, fixing something outside with daddy or playing football over those things any day! Saajan seems to be following in his footsteps – he gets bored of being indoors quite quick! Arjun has had hours of fun in his Go Green Playhouse that was kindly gifted to us by Little Tikes last year.

The event hosted by Little Tikes was for us to explore the different range of outdoor toys that they have to offer – many of which I didn’t even know existed! Little Tikes are famous for their chunky, sturdy and colourful toys. I also love how versatile they are – for example, their tortoise sandbox which has been in production for decades, can be used as a ball pool as well as a paddling pool or sand tray! Win win as it means you get to use the outdoor toy throughout the seasons.

Arjun had a great time exploring the water toys outside and was a little taken a back by a bucket of water catching him on the Fun Zone Tumblin’ Tower Climb – he hadn’t quite figured out the pulley mechanism right away. He enjoyed playing with the Fountain Factory Water Table which he has at home – through play, he’s become more confident with how it works.

And he loved catching us with the Splash Face which is like a tug of war water sprayer. He wasn’t as enthused when someone got him back though! He really enjoyed playing with the sand toys and using the diggers for role play.

Arjun literally went crazy over the BBQ set by Little Tikes – having BBQ’s is his latest obsession and this is perfect to ensure he gets to participate in a safe environment.

With Saajan, one of the things that can be quite heartbreaking having a child with Down Syndrome is him not being able to always play with toys that his typical peers may be playing with as he’s not yet quite there with the crawling, balance or walking. To be completely honest, I didn’t have any expectations of the event in terms of what Saajan could play with but we were so thrilled with how many toys he was actually able to use.

 

The Fold’n’Go trike was definitely one of his favourites. The trike was sturdy and offered just enough support for him to balance himself on it. He really enjoyed his stroll and we are so excited for him to have his own! We particularly loved this one as it has a folding mechanism to enable compact storage – perfect for our little family adventures!

Saajan also loved the rocking horse which he was super comfortable on sitting with by himself. He also enjoyed the ball pool. We were so grateful to the team at the event for being so helpful with selecting appropriate toys for Saajan to try.

Both the boys enjoyed their lunch and Arjun enjoyed a spot of crafts before getting his face painted as his favourite superhero – Spider-Man! All in all, we had an amazing family fun filled day! I love the range of outdoor toys and how engaging, education and fun they are enticing my children to spend even more time outside during warmer days!

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Post Natal Psychosis in the Asian Community – The Unspoken | Guest Post

One of the main reasons I started my blog was as an outlet for me to express myself during my darker days of Post Natal Depression (PND). What I didn’t realise is, how many women were in the same boat as me but didn’t speak out about it openly – especially in the Asian community. I’d like to think as a community, we’ve moved forward with being more open and accepting of mental health issues but I know there is a long way to go and there is still a stigma attached to it.

Since I started sharing my journey, the blog has become a lot more meaningful than I ever could have imagined. I thought my darkest days had come and gone after I had Arjun and went through PND. What I didn’t realise was I had a whole lot worse coming my way.

When you fall pregnant, you have a perception of how things will pan out – you expect it to be just like those glossy magazines portray – an instant burst of joy, a natural high as you sniff the first whiff of your baby’s smell, the instant bond you feel as you hold them close and have skin to skin contact. All the firsts. All the magical moments. You imagine everything will be blissful.

You believe that anything that deviates from this immaculate picture is wrong and suddenly you’re consumed by a wave of guilt, panic, fear. You begin to believe there is something wrong with you, that you’re not bonding with your child.

For me, that was the beginning of a downward spiral – when my reality didn’t meet my expectations. When things didn’t quite go to plan. When my labour was a lot longer than expected, where I was unable to meet my baby till he was 5 hours old. Where I received an unexpected diagnosis.

For me, I didn’t feel that instant burst with Arjun. I was confused. With Saajan, I fell in love instantly – for all of 9 hours till we received his diagnosis, the comfort and warmth I felt was ripped from beneath my feet within seconds. My world turned full circle within 10 hours. The wave of sadness I experienced after my mind became clouded with misconceptions, as I grieved for the child I thought I was going to have, – nothing could ever have prepared me for.

Though I’ve come a long way, I still have sheer moments of devastation and sadness. I wonder if I’d still have these feelings if Saajan wasn’t diagnosed with Down Syndrome. I think deep down I know I can’t attribute all of what I experience to just his diagnosis. Though that has been life changing.

My blog isn’t only a forum for me, it’s a forum for others to also share their journeys. I’m always honoured when others ask to share their stories here as it means together we are able to help more and more people that are in the same boat that may feel the same way that we do.

On the internet, you’ll find quite a bit of information on PND, however, Post Natal Psychosis is almost unheard of in the Asian community. Raising awareness for such a serious illness is something I hope we can do by sharing the below story. To protect the identity of the author and her family, all names have been changed. We will call the lovely lady, Simran. I’ve been speaking to Simran and my heartbreaks when I hear all that she has been through.

The loneliness.

The fear.

The devastation

The guilt

The absence of information.

The unknown.

The lack of support from professionals – those who we trust our own and our children’s lives with.

Although I appreciate the NHS are stretched, I do believe that being in that field of work takes a special kind of person. Adopting an impersonal and robotic approach especially in exceptional circumstances can have devastating mental effects on the patient. Humanity costs nothing.

I was thankful for the support I received during my pregnancies but I also felt a huge void after receiving Saajan’s diagnosis – I was handed a leaflet – the first page told me my son had a 15% increased chance of developing leukaemia, and that was pretty much it for a few days. I was left to deal with things on my own though thankfully the midwives were very warm and comforting in their own way though they didn’t seem equipped to be able to answer my questions or to deal with me. I became obsessed with the horrible life I thought we were going to have. I convinced myself that my life was over. I didn’t want this life.

There is sometimes also a misconception that a c section is the easy way out, that you don’t have to go through labour – Simran demonstrates how it can leave you feeling paralysed and incapable of tasking care of your newborn – that combined with the hormonal roller-coaster can be a recipe for disaster. A c section is a serious operation and often women don’t get the choice. The aftermath of a c section can be damaging as was the case with me. I didn’t change Arjun’s nappy for two weeks – Preetam and my sisters did it before me, as I was unable to care for him immediately, my confidence was absolutely shattered and it left me feeling like a hopeless and incompetent mother. I couldn’t be alone with Arjun as I believed I wasn’t a good mother despite what others told me. I became my own worst enemy.

I am so grateful to God for giving me the opportunity of meeting so many amazing and strong women through the blog. Together, we stand stronger.

Thank you Simran for your bravery and for allowing us to be a part of your recovery journey. Always in our prayers!

If you are experiencing any of the symptoms described below, please reach out. Although Simran was let down in many ways before receiving the right help, I’d like to believe that this isn’t reflective of everyone in the profession.

If you’d like to help us raise awareness, please share this post wide and far and please have conversations with your family, friends, colleagues to create a more open environment for those suffering with mental illnesses to be able to talk – it could save a life.

Simran’s journey …

The day I found out I was pregnant; my husband and I were both ecstatic! For most it takes a while to get excited or prepared and to get over the shock but for us the planning started almost immediately. Discussions of maternity dates, nursery themes and making endless lists of things we needed.

12 weeks
12 weeks felt like a long time to wait for the first scan compared to our excitement and then the day finally came. The sonographer told us to watch the screen whilst she was faffing around looking for our baby and then within a few minutes there he was. Our faces both lit up whilst she had a slightly puzzling look on her face. She then congratulated us and showed us we were expecting twins.

I was expecting twins.

That was a curveball I definitely didn’t expect! The shock was evident on both our faces!

We informed our families of the news as soon as we got back home and they could not have been any happier. Everyone wanted to get involved with the planning and we were so lucky to have people offering to help straight away to ease the stress off us both.

I soon after met with a midwife whom I knew almost straight away wouldn’t be useful. Any questions I asked or concerns I had she responded with roundabout answers about how I should google it or speak to a consultant. For light conversation constantly talked about her own pregnancy, which was of no help to me. I couldn’t talk to her, so maybe the consultant would be the way to go and I had plenty of time I thought at this point.

20 weeks
My husband and I agreed we did not want to know the sex of the twins and wanted it to be a surprise. We were so excited to see our babies again and this time was hoping there would be no shock. We had our scan and both of our babies were healthy and everything looked perfect. I asked when I would be seeing the consultant as I was told all consultant appointments were aligned with my scans. Everyone I asked told me to wait for a letter even though I expressed I needed to see a consultant to answer the concerns I had about carrying twins! There was little help and I was told to wait.

25 weeks
After a month of nothing, I knew I had to be proactive as my concerns were growing and I couldn’t find anything to help me personally. I went in for my scan and demanded to see a consultant, it worked. The consultant came and begun by checking my blood test results from 6 weeks prior to the date which showed my HB levels to be critical. There was no communication about how this had been missed, had I not asked to see the consultant in the first place I dread to think of when it would have been detected.

My husband and I were not told any details about what this meant if anything the consultant continuously said to my husband in an accusatory tone he would have been “put in prison” for not looking after his wife in his country as if this was somehow something my husband should have known and detected. We were confused, uncomfortable, anxious and felt slightly threatened. The consultant did not answer my concerns or comfort me, instead he scared me and increased my anxiety.

29 weeks
I started to feel tightening pains in my stomach, not knowing if I was being absurd or not I ignored them thinking this is what it must feel like when two babies are moving inside of you. Until the pains became so strong I couldn’t ignore them any longer, I began to panic. From the research I had done, I knew it was likely that twins came early but surely not this early?!

I rung the hospital to let them know and they asked me to come in just to get checked. The consultant wanted to check my cervix but I asked him to wait for my husband so I felt comfortable.

Once my husband arrived, the consultant checked my cervix and we were informed in minutes, there was a high chance I would be going into labour. My husband kept asking him how sure he was but he said there was so definite answer but it was looking pretty likely. I was told I was not able to stay in the hospital and they would need to find a bed elsewhere for me and the twins. We were told it could be as near as the next town or as far as 100 miles. Luckily (the only thing that went in our favour) a hospital in the next town were able to have me. I received steroid injections to strengthen the twins’ lungs and was then transferred by ambulance.

I stayed in hospital for 5 days having various injections, around the clock monitoring and different drips, it was all a blur. I was then finally given the all clear to go home (at this point all I wanted was my own bed). I didn’t go into labour and everything was ok, it was scary that something like this could happen and I had no idea why or what I could do.

31 weeks
I had another growth scan to ensure everything was okay. The sonographer showed us the twins, did some measurements and asked us to take a seat in the waiting room. The same consultant that wanted to imprison my Husband informed us that;

One twin had stopped growing and my HB levels had dropped further.

I required a drip to increase my levels. When was this nightmare going to end? It kept getting worse and we couldn’t even think of the next step without being terrified. A series of scans were booked for everyday to check the placenta, the umbilical cord and monitoring the baby’s heartbeat. Followed by a growth scan in 2 weeks. We were finally making progress, something proactive was happening and we could understand the course of action.

I asked to discuss a birth plan, I wanted to mentally prepare myself and of course everyone always says it never goes to plan, the whole point is to have an idea and understand your options and what to expect to some extent. I had already experienced a scare, I wanted to know more! The consultant told me to wait. The midwife, at every single appointment I had told me to speak to a consultant. I was at a dead end!

33 weeks
My husband and I were exhausted, hardly any rest and the hospital became our second home. This was our last appointment before the growth scan in a couple of days. The sonographer asked me to get in lots of different positions so she was able to check the pressure on the umbilical cord. She then asked us to take a seat in the waiting room, we knew what this meant by now – bad news! A midwife told us I would need to stay at the hospital for monitoring as the pressure from the umbilical cord was too high for one of the twins and it was of concern.

My husband went home to collect my overnight bag whilst I was taken to the ward. I was confused as to what this meant but there was no one around to answer my questions, I was just being told where to go, tested on as if I had no feelings or position to have questions.

I stayed overnight, woke up in the morning and thought of what I had planned for the day had I not been stuck in hospital. I had planned to go to the cinema as a treat before I gave birth and to collect our pushchair from the store as I received the confirmation. Instead I finished my breakfast and waited for a consultant to talk to me. It was impersonal and routine, I watched the consultant walk in, no pleasantries, no communication. She placed her red Gucci bag on my bed and flicked through my notes. She looked up at my worried face and told me they would be delivering today and I needed a C-section as she did not want to put the babies through any more distress. I had questions, I asked her to talk me through the process before I had a chance to say anything further she said the midwife would explain, picked up her bag and left.

A C-section, babies arriving today. I rung my husband feeling absolutely lost for words and terrified hoping he could tell me there was a plan and he could do something to help. The uncertainty was overwhelming. Would they be ok? It was too early! What would happen? I pressed the buzzer hoping someone would come and answer my questions and comfort me. I resorted to Google as no one came, I did this for 6 hours until I was moved into a labour suite.

The procedure – 33 weeks
My husband and I met the anaesthetist who told me the midwife would come shortly and explain the whole procedure. We were taken in, no midwife came. I had an epidural and the procedure started. My husband sat to the right of me by my bed and a set of doors just behind him leading to another room. I didn’t feel much but then…

I heard a cry!

A nurse ran, with my baby. My baby was in her arms as she ran through the doors. What was happening? I asked my husband what had happened and if our baby was ok. My attention diverted, I could hear the surgeon “come on baby, come on please”. What was happening?

I heard another cry!

The same thing happened, a nurse ran with my baby. My twins. Were they both ok? What did I have? I asked the anethisist who said he could only find out once he was able to go. I asked if my husband was able to go and find out and he agreed.

My husband came back and told me we had two beautiful healthy baby boys who didn’t require help breathing but needed to be taken to neo-natal. I wanted to see them, to hold them and to make sure with my own arms that they were ok.

24 hours post – birth
I was stitched up and taken back to the ward, a room at the end of a long corridor. I felt alone, isolated and far from everything and especially my sons. My husband took photos but I wanted them with me and to hold them.

I was in pain now as the drugs started to lose their effect, I needed pain relief and an update on my sons, no one came. I pressed the buzzer for a long time. I’m not sure how I survived that night, emotionally drained and physically my body felt alien to me and yet I could feel pain.

8am
Two midwives came in to remove the catheter, I asked for pain relief as it had been almost 12 hours and it was tough. They didn’t come back.

9am
My husband arrived with a wheelchair to take me to see the boys, I couldn’t move because the pain was unbearable. He couldn’t believe I had not been given anything in 13 hours and demanded the midwife brought me pain relief, I was given a paracetamol and I asked the midwife to help me into the wheelchair. This midwife told me I needed to mobilise and she wasn’t going to help me, I begged for a little help, I wanted to move, I wanted to see the boys, I wanted to be out of that room but I couldn’t without being in pain. She said and I can remember this because I couldn’t believe how I was being treated…

“I have other patients who have their babies with them and need help, you are wasting my time”

I felt worthless. My husband stepped in and tried to help and she snapped at him saying “Make her do it herself”. I felt nauseous, dizzy and in pain but I did it eventually but I was so upset I couldn’t think of anything else. Was I really worthless? How was I going to look after my boys? I had failed already? Was I not fit to be a mum? This couldn’t be real, it was a nightmare and would I ever wake up?

In the evening, after some rest I was able to slowly get into the wheelchair and went to see the twins for the first time for an hour. The nurses in the unit kept talking to me about expressing milk and how I had to start it straight away. I fell in love with my babies from the moment I saw them but I couldn’t help the overwhelming feel of guilt. I had failed them. Why had it taken me over 24 hours to come and see them? Would they know who I was? Seeing all the tubes and machines made me feel worthless. Useless. I was a bad mum. I couldn’t provide for my babies when they needed me.
The following morning, a midwife told me I had to leave the hospital that day as they were discharging me. I told her I needed help expressing as no one had come to help and I was not able to move still so how would I come to see my babies? She told me there was nothing wrong with me and that I needed to get a pump and “get on with it”.

I managed to stay one more night and attempted to start expressing. All these thoughts and comments from the midwives began to echo in my head.

Going home
I left the hospital alone, long gone where my dreams of leaving with a baby or the twins and going to the Gurdwara straight away. I left with a breast pump and was alone. I was abandoning them and I felt like everyone knew. I walked along and could see people looking out for a baby/the twins.

The midwife’s voice followed me, she wouldn’t stop. She kept telling me I was a bad mum and the boys were better off without me. How was she following me? I looked around, she wasn’t there. Why was I hearing her? I felt someone behind me, I looked to my left. He was there, the consultant. I was confused. I stood there staring at him and told my husband he was there. He didn’t know what I was on about so I stayed quiet. I didn’t understand. Why did my husband not acknowledge him?

The next few weeks I spent constantly expressing. We would stay at the hospital from 9am – 9pm. I still felt no bond. I would sit next to the incubators crying just hoping I could have done something different. I would hold their hands constantly saying sorry over and over again. Her voice still echoed in my head. “You did this” was what I heard every time I entered.

Once the twins were home, the next few months were hell. I couldn’t tell anyone what I was experiencing, she told me they could all hear and see them but everyone wanted me to suffer. He would follow me wearing a black hoody, always looking down with a gun in one pocket and a knife in his right hand. Why was this happening? Why would no one tell them to leave me alone? Why was no one scared? I never understood but was still too afraid to say.

It all got too much. Everyone wanted to see the boys, I didn’t want anyone near them. She told me people wanted to visit to hurt them. I was afraid. I wanted to be alone.

Then came everyone’s unwanted advice. I would always complain I didn’t want people’s advice because they didn’t understand what was happening but I was told to just agree or ignore it. I couldn’t. Why was everyone undermining me? I wasn’t able to leave my babies for a moment without having someone constantly judging me. I lost myself. My family were confused. I was always chirpy and happy to help others. I wanted to stay in a room alone with no one around. I had to, she told me I had to. She told me she knew what was best for me.

We were in and out of hospital with various different problems with the twins and she told me it was me. When I touched them, I was hurting them. I was confused. Before I was the only person to protect them and then I was the one hurting them. I had to believe her. She told me I had to and if I didn’t, he would hurt the twins with his knife. I would shake in fear. I had to stay away from my babies to protect them.

First it was to stay away then she told me I could no longer be round. I had to go. I had to go to the bridge. The bridge that was a couple of miles away from our home, I had to go and jump. She told me if I didn’t, he would hurt the twins and I couldn’t let that happen.
I tried to reason with her, I tried speaking with my health visitor to explain I was struggling but could never explain the full extent. I tried with the GP but she told me I wasn’t allowed to tell them. I had no choice, I had to go. I wasn’t allowed out the house on my own at this point as my husband knew something wasn’t right. I had to ask him to take me, it was the only way. He told me it would all be ok but it wasn’t going to be ok. She was right, they all wanted to see me suffer and that’s why he wouldn’t take me.

I needed to go. No one would take me so there was only one way, to escape. I ran out the house, in the hope I would get there. My husband carried me home. I sobbed, why was he stopping me? I spoke with the crisis team on the phone after my mum made the referral, the man on the phone said they were going to help. Finally. Someone is going to help me and take me. I drew the map ready to give to them. I was ready with my shoes on stood by the window. The crisis team were called, I kept telling them we needed to go right away. They asked me a few questions and told me I had to go with them to a hospital. I was confused. I didn’t want to go to a hospital, I told them I needed to go to the bridge. Why were they not listening? I refused to go only for them to inform me I was to be sectioned as I was a risk to myself under Section 2 of the Mental Health Act. I had no choice, it was either that or the police taking me.

I stayed in hospital for 2 weeks until being granted leave. Things didn’t improve. Then the self-harm started. It was relief from the pain I was enduring. I couldn’t do anything. I was under constant watch. The house keys had been locked away, someone with me at all times.
I was taken back to the hospital after I tried to escape again. I stayed again for 2 weeks for the consultant to tell me I had a Borderline Personality Disorder. I was confused – they were trying to pin anything on me. This couldn’t be right.

I met with a psychiatrist from the perinatal team and spoke about the consultant who followed me and the midwife giving instructions. She referred me right away to the mother and baby unit. I didn’t want to go to another hospital to be diagnosed with something that was not right. She agreed I did not have a personality disorder.

The urge to go to the bridge was still strong. I left the house following an argument with my husband and went to my mums. When I left, she told me now was my chance to go to the bridge. I felt a sigh of relief knowing I was able to. My parents knew something was wrong. I went to a bridge close by but she told me I had to wait for people to leave and I was then able to jump. I could feel the tip of the knife poking my spine. I had to do this. My friend managed to find my location from my phone and phoned me to tell me to go to my car. I sat in the car telling her everything was fine and I had to do this, the man stood outside the car tapping the window with his knife. I had to do this.

I heard sirens, it was the police along with my parents. I couldn’t go to another hospital. I begged them to leave. I tried running towards the bridge but they caught me. I was taken to the crisis team who again gave me a tablet to calm me but they didn’t listen. Why was no one respecting my wishes?

A few days later, I was taken to the mother and baby unit with my twins. It felt strange. Following observations and meetings with consultants, I was diagnosed with Post-Partum Psychosis.

My journey hasn’t yet ended but I am on the road to recovery with the right treatment. I am undergoing EMDR along with medication. I wish I had the birth I dreamt of. I wish I was able to hold my babies straight away. I wish I felt that bond. I wish I spoke out earlier before everything escalated. It’s been difficult writing my story but my only wish now is that I will be able to help someone speak out when they need help.

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Down Syndrome Diaries | Why I Chose to Work With Those With Down Syndrome

When Amber first messaged me, my heart instantly melted – I really struggle to find words to describe how I feel about Amber. She’s a vivacious little fire cracker with a heart of gold. She sees no different and is probably one of the biggest Down Syndrome advocates I’ve ever come across. Unlike the other stories I’ve shared, Amber has no direct relation to someone with Down Syndrome. At such a young age, she has chosen to dedicate her life to supporting those with Down Syndrome because, as she describes below, it’s changed he life. Plus she says most of her friends can do things that she’s still unable to do – Matt regularly helps her with her washing as she doesn’t know how to use a washing machine! Haha!

You’ll often see Amber going on a night out with some of her closest friends, who happen to have Down Syndrome who she is not a support worker for. She chooses to be friends with them as she genuinely gets along with them and has a fantastic time with them. She says her life would not be the same without them. She has a pure heart of gold and what I wish for is a world full of people with as pure a lens as she has.

Amber has dedicated her choice of studying to studying Down Syndrome and prenatal testing and isn’t shy to shout it off the roof tops just how proud she is of her friends.

She has held my hand through this journey – she is an absolute God send, any time I have any fears or worries, I know she’ll be able to answer them herself or through her friends or their families.

A big thank you to Amber for helping me to collate several of the stories I’ve been able to share.

Below Amber shares her journey.

What chose you to want to work with people with Down syndrome?

From around the age of five I knew that I wanted to have a job where I help and support individuals, I didn’t realise at that age that I would specialise in Down Syndrome I’d always thought it would be across-the-board.

Over the years I’ve had many jobs, including working at a law firm which I really enjoyed until I found that I could be doing more to help individuals rather than working 9-5 not achieving anything.

It sounds corny but I feel like the job I do now I was destined to do, I currently support individuals with learning disabilities whilst studying at university, as I hope soon to be a special needs teacher at a specialised primary school near me.

What have you learnt about working with people with Down syndrome?

This is a tricky question as there is not enough time in the world to possibly explain how much I’ve learnt. There are a lot of misconceptions surrounding adults with Down syndrome, like “Oh I bet the people you work with are dead loving” this is something that frustrates me as each individual has their own personality which cannot be dictated due to their learning disability. I have learnt that all of the adults I support and all of the adults that I count as my closest friends with Down syndrome all have their own amazing personalities they’re not given credit for the level of intelligence they have, sometimes when I’m upset Claire will call me and say some of the most inspiring words that just pick me up, which often makes me realise how much we take life for granted as most of these adults have some form of health condition yet you will never hear any of them moan about!

I sometimes get offended as I find that some of my closest friends have Down syndrome and many assume I support these individuals, so say if we go to the pub for a drink people look at me with a disappointed look, almost as if I were their terrible carer out on the razzle “you’re getting drunk on the job” which the girls actually notice people staring, but what’s funny is that the girls are all older than me by around 7 to 12 years and the misconception that they are very mentally young which is incorrect as I find that all individuals have tendencies to enjoy things from their childhood just like an adult with Down syndrome yet many a treat these adults like babies. One thing I can honestly say is that I have the best time with these individuals who society need to treat as individuals

How is what many perceive different to the reality for people with Down syndrome?

I find that many adults with Down syndrome get treated like babies which they themselves notice and tend to get upset by. Don’t get me wrong there are adults out there with Down syndrome that need extra support but isn’t that the same for adults that we class as ‘normal’ many parents that I know get cross with how their children are babied, as it can come across extremely patronising.

What would you like the world to know about people with Down syndrome?

The biggest thing that I’d like people to know is that adults with Down syndrome are capable of leading healthy, – what you would call ‘normal’ lifestyles if they have the correct support around them.

Over time I have met many different adults and I could be wrong but I have noticed many adults are a reflection of their family, so I know some individuals as the Down syndrome social scene is very tight knit that are not the best people what I would call a bit naughty sometimes then when you meet the families you see that the individual has either been spoilt and allowed to get away with bad behaviour or they have not had the support and encouragement to achieve what they want to therefore take part in negative behaviours in order to get attention. Whilst studying I found that many books are very scary to read as they make Down syndrome out to be tragedy “the end of the world” which that it is not I find that because most academic journals our extremely dated information is incorrect, as now in the 21st-century is a lot of promoting our adult independence, which I think is completely down to the individual and parent’s discretion whether the child needs an independent lifestyle.

I dedicate my words to Claire Ruth and Laura x

 

Amber x