Feeling deflated!ย 

For the past couple of days I have been finding it hard to be my normal, bubbly, excited and happy self. 

No matter what I try to do to perk myself up I just feel run down, unhappy and beaten by life.

It’s like this gloomy cloud that is just hanging over me and the little things that don’t bother me normally or I can usually brush off and forget about are actually starting to bother and get to me.

For example yesterday as I was watching Baby and her sister playing happily in the park together.

  

Baby was thrilled to finally be getting the chance to try something other then the swings. she was truly loving the freedom. 

As I watched them play I started thinking about how often we are going to be able to go to park now the weather is nicer and about when I use to take E when she was Baby’s age and watch her run around and climb the climbing frame and go down the slide. Then I started to think about how long it’s going to be before Baby will be able to do that.

It was then my chest started to tighten and my heart ached because I finally noticed and realised that Baby wasn’t walking yet. All of her little friends at playgroup are toddling and she has just started to master standing and a bit of cruising. 

At that moment I saw a family with a child younger then Baby and he was running in front of his parents into the park. I nearly broke down in tears right in the middle of the park because I finally starting to see her learning delays. 

I always knew it takes children with DS that little bit longer to learn new thing and they don’t just pick things up and Baby has been so amazing at learning things quickly and has been hitting all her milestones that I just never really noticed a difference between her and other children her age. 

I guess what I’m trying to say is that first realisation can as a shock. It knocked me for six and it has had me worrying and brought back a load of fears and emotions I thought I had already dealt with. 

And it has left me feeling really deflated! 

Nikki x 

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Why having a child with Down syndrome is the best!

The day Baby was born my world changed forever. Not because I had just become a mother again but because I had become a mother to a child with Down syndrome. At the time I didn’t realise what that actually meant. Because in the early weeks of her diagnosis I was too busy urging her to fight so we could take her home from the neonatal unit.

While having visions of my life being spent constantly in and out of hospitals, living off machine coffee and sitting in waiting rooms or hospital lounges. From the moment they told me my baby had Down syndrome my planned out future was no longer clear. It was all replaced with uncertainty and fear.

I didn’t know what to expect or how to process the information. I was scared I wouldn’t know how to care for a child with additional needs. I felt like I had been thrown into the deep end and I didn’t know how to swim. I was lost and I thought my life was over.

I am happy to say I was so unbelievably wrong! My life was never over, instead a new chapter was beginning for me and my family. I was changing and growing into a better person and I learned to become more accepting of things and I also learned that there are always going to be things that are out of my control. I learnt all of this from watching, loving and spending time with Baby. I don’t know what to say other than she is amazing. She has this air around her that draws people in. Even now at 17 months old she has a way with people, that make them just want stop and smile when she is around. It’s like no matter how bad of a mood I’m in or how stressed out I am she can make it better, when she wants a cuddle and she wraps her little arms around the back of my neck and rests her head on my shoulder and it all melts away.

Most of all though I love her determination. She has had more then enough things thrown at her in the start of her life but she chose to fight and over come almost every hurdle.

When I think back to all the nights, I would sit worrying if she would sit up, talk, crawl or walk. All those tears and moments I feared people would judge my baby as being different or ridicule her for her extra chromosome.

I shouldnt have I should of love my daughter and just stared into her beautiful face and know everything would be ok. I should have enjoyed my baby from the start and not let those things bother me because my Baby is amazing and is forever keeping me in my toes. I won’t change a single thing about her because if I did she wouldn’t be the Baby I know and love with all my heart. She is the best!

As the saying goes:

You can’t be extraordinary without a little “extra”!

 

Nikki x

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#WickedWednesday #6

This week has been a week full of sulky faces.

 

This was Baby on Saturday because mummy said no to giving her my phone. 

As I stated on my Instagram picture. People who say people with Down syndrome are always happy need to just take a look at this picture. It’s a perfect example of Baby throw an tantrum because she isn’t getting her own way.

Don’t worry I was nice enough to take more pictures of this tantrum (to save for her 18th birthday cake!). So you could see what I have to put up with from my 17 month old. 

Can you say early terrible two’s? 

As you can see she went on to try the “I’ll look really cute while I cry” tactic, to see if I would give her my phone.

  That did work so she went back to tantrum mode.

  She nearly broke me with the “Why mummy?” Look but I stood firm and I didn’t give her my phone. So….. 

  ….she decided to go for my iPad instead.

  The tears quickly dried up and she was back to smiley Baby again. 

Just goes shows, how much of a little madam she can be. 

She wasn’t the only little madam this week though. E has been join her in the sulky tantrum stakes although her wasn’t nearly as cute but was rather funny. 

  

Here is a sulky E because I told here I didn’t know where she put her new Lego magazine. I know I’m such a terrible mummy for not knowing where she left it last. 

I did find it 5 minutes after this picture hidden in the sock basket and when I told E her reply was “Your silly mummy, the socks wanted to read too!”

So there’s my #WickedWednesday which has been full of sulky, tantruming girls. Thankfully my boys have been good ish.

Nikki x 

 

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#BWphotoproject – Hearts

 

I was playing with photos and having my beautiful baby posing for a great snap that I could use for World Down Syndrome Day.

I think this photo is great because it doesn’t just raise awareness for Down syndrome but also heart awareness and that no matter what she is always be in my heart. 

We were really lucky that the 2 holes is baby’s heart at birth closed on there own as she got older and she was discharged from her heart specialist at 8 week old. 

Some parents aren’t as lucky as us and I want them to to they ar always in my thoughts.

Nikki x 

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#Project365 – Week 12

This week is an exciting week because it has Mother’s Day, My 1st Blogiversary and World Down Syndrome Day. 

It’s a very busy and full of fun week.

Day 74 

 

My Hubby and kids made me a special Mother’s Day breakfast. I must say it brought a smile to my face ๐Ÿ˜€ I am a very lucky mummy!

Day 75  

 

We had a poorly E who was on Monday, high temp, runny nose and feeling sorry for ourselves. Luckily calpol and mummy cuddles where prescribe with docmcstuffins on sky planner. She was fine and back to school the next day.

Day 76 

 

Tuesday was my first Blogiversary and I have some lovely pictures in my post all about it here. I hadn’t realised that Monday had been the start of Down syndrome awareness week. So I made baby a little poser (she was a natural!) and made this picture. I must say I’m pretty proud of both her and the picture.

Day 77 ๏ปฟ

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E was a really brave girl when she went for her preschool booster. She didn’t even cry. she did get a little upset on second injection, but it was nothing a super mummy cuddle couldn’t fix. Super proud mummy at how much a trooper she is ๐Ÿ™‚ 

Day 78๏ปฟ

Baby got her first pair of Piedro boots from her Orthotics doctor. She was given these and some splints because has a lot of movement in her ankles (due to hypotonia) these boots and ankle will give her the extra support she will need to stand and eventually walk. They are already working wonders and I think there beautiful.

Day 79๏ปฟ

 

I almost forgot to take a picture on Friday and I only remember when I was in middle of dying my hair. So I had to settle for this lovely hair dye selfie. 

I know it’s so flattering lol 


Day 80๏ปฟ

๏ปฟ

Today 21st March and it is World Down Syndrome Day! 

This is our #lotsofsocks for #worlddownsyndromeday #WDSD2015 #WDSD15 #downsyndrome #trisomy21 #teamT21 #21stmarch 

Today is world down syndrome day because people who are born with the genetic condition Down syndrome have 3 copies of the 21st chromosomes and the 21st of March is the 21st of the 3rd month.

We ask you to wear lots of colourful socks to show that everyone may be different but we as still the same. Plus if you add the heels of sock together but turn one sock upside down it makes and X which is the shape of a chromosome. ๏ปฟ

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๐Ÿ’›๐Ÿ’™๐Ÿ’›๐Ÿ’™๐Ÿ’›๐Ÿ’™Happy WDSD everyone๐Ÿ’›๐Ÿ’™๐Ÿ’›๐Ÿ’™๐Ÿ’›๐Ÿ’™

So there you go that my week in pictures ๐Ÿ™‚ 

I hope you have had a great week and I can’t wait to see your photos.

Nikki xxx

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My first Blogiversary

This is a post that has been playing on my mind for the last few weeks. You see as the weeks turned quickly to days. I was wondering what I would actually do to mark this occasion.

Would I do a review, a giveaway, write a deep meaningful post or just mumble along through a random post and see what I can up with. (If you can’t guess I have chosen the latter)

Then a really happy coincidence happened. I was given a spa day voucher by the Hubby at Christmas and I had booked the day for me and one of my best friends to enjoy. We had thrown around some dates and I had actually booked the 17th March for our day together, not realising it was our spa day. (A very happy surprise)


I must say we had a great day and the rest and relaxation of my spa day was excatly what I needed. We even went out for a kid free lunch at Nando’s. Which was extremely strange but also really nice. It was a proper lady’s that lunch sort of day and was prefect to celebrate my first Blogiversary.

I will say that that most of today has been spent with me thinking back about when and why I first started my blog.

It was the begin of Down syndrome awareness week (just like it is now) and it was also my first one as a DS mum and at the time and I still wasn’t in the best of places when it came to fully accepting my daughter’s DS. It was a hard time, so I wanted to learn more about my daughters condition and other parents experiences. This meant I was reading loads of different blogs, that DS parent from all around the world.

It was then that I decided that I would join the world of bloggers and I would put my little Baby’s story out there. I am really glad I did because it help me get all my feelings out and it help me come to terms with everything my ย family and I were going through. It was great and by the time I had written a handful a post my feelings had already started changing. A year on I can happily say the DS isn’t an issue anymore. Compared to when I started this blog and DS was always in my mind, now I hardly ever think about it. I can go days, weeks and sometimes even months without DS being in my thoughts. When I look at my Baby I don’t just think DS anymore, I think of how much of a wriggle bum she is, how much she loves cuddles, how she cries if someone around her is sad or how she is as stubborn and determined as I am.

It is because of this determination that I know she will be fine and that baby won’t let anything stop her.

It is also why my blog has changed numerous times of this year as I find where I belong and what I want to share. I think I have finally found my little bit of the blogosphere. I have made it my own and it maybe be a bit random, a bit disorganised and full on my children. But that’s me!

I find it hard to believe that I have been blogging a year! It has been a great and what a year I might add. And that Something that started out as a random thought and as just a hobby, is now this massive part of my life. I don’t think I would know what to do without it.

So here is to a great year everyone and a massive thanks to all my followers on here, twitter and my blog Facebook page.

I hope you all enjoy reading and I can write another post similar to this on my 2nd Blogiversary.

Happy Blogiversary to me!

Nikki x

Super Busy Mum

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Emotional

This is the first post I have started/done in nearly 2 weeks!
I could tell you the reasons for this is because I have been busy with all the birthdays and life etc but honestly that would be a lie.

Because even though the last few weeks all I have been thinking about is that baby’s 1st birthday is coming up. (It’s actually on Saturday! Yikes!) that isn’t the reason I haven’t been blogging.

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See to most this is a happy, exciting time and don’t get me wrong I am thrilled my little girl is going to be 1.
But I find the closer her birthday comes the more I am thinking about the day she was born and how it was the most terrifying day of my life.
(You can read about it here)

For most people remembering the day their baby enter the world is a joyous occasion. Where they reminisce about those first moments when they are embracing them tightly, as they study all their features, about giving their baby it’s first feed or cuddle and stare into their face imprinting the image into their heart and memory forever.

For me most of those first moments aren’t filled with happiness but instead they were filled with fear, worry and terror.

this picture was taken just before the doctors came in to see me)

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Because while I cradled my new bundle I was gripped in fear for her future as the doctors explained to me that they believed she had Down syndrome.
In that moment everything changed.
I worried about how I would cope or look after a child with a disability. I had never done it before and I didn’t think I would be able to handle it.
The questions “Why me?”, “Why us?”, “Did I do wrong?” Whizzing round my head as I tried to take it all in.

I was still in shock from her fast arrival and then with the added shock of her diagnosis. I was completely lost! To me the future was bleak and I didn’t know where to start to process everything.

Once the doctors left the midwife give us time as a family to figure out our emotions before they explained what would happen next.

I was still cradling my precious little girl looking at her but instead of studying her face to my memory. I was looking for the characteristics that the doctor had seen. Telling myself they must of made a mistake but knowing as I stared into her face that they were right.

Time didn’t seem relevant as minute felt like hours that passed in seconds.
Because with all this happened within an hour of me giving birth.

When the midwife came back she encouraged me to try feeding and explained that it may take time or baby might be sleepy due to low muscle tone and weak suck.
Baby soon showed her though by latching on and having a good go at feeding.
But I couldn’t fully enjoy that first moment because my head was still I total mess as I had 2001 questions running through my head. Thinking about the future, my plans, my family and my kids. How was everyone going to handle the news.

A few minutes later I noticed baby was getting sleepy and was no longer suckling as much. I changed her position and that when I was thrown into one of the most terrifying moments of my life.

As I moved baby I notice she was stirring and her breathing started to shallow. I turned to my mum and asked her if something was wrong and we notice baby’s skin turning a grey colour and her lips were going blue. She couldn’t breath.

My hubby and mum went to get the help, as I held my little girl in my arms. Feeling completely helpless and not know what to do.

Luckily the staff responded quickly. The room filled professionals that whisked her out of my arms into a cot in corner of the room and put her on oxygen to bring her round.

I couldn’t watch what was going on I just held on to my husband and stared at the door in front of me. I thought she was going to die and I didn’t want that memory I didn’t want to see my child take her last breathes.

She responded to to oxygen but not enough and she was taken round to neonatal to be give support there.

My heartbroken as I watched them wheel my baby away. I as if I could go with her and broke down sobbing as they explain I couldn’t straight away.

I was lost, I was scared and was numb.

Once I was cleaned up and changed I was able to walk round and see her to say good night before I went to my room on ward.

they took this photo for me to take to my room

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I kissed her good night, as I silently prayed to myself that it wasn’t our last. I wanted her to fight, I wanted to be able to hold her and I didn’t want her to be apart from me.

My husband an mum got me settled in my room and left to go get some rest hoping I would do the same.
I tried to get myself settled but I just couldn’t relaxed.

Then the doctor came to visit me again and explained Baby was needing more oxygen support and she was put on a ventilator.

I rang my husband and explained everything to him. My voice breaking as I tried to fight back another round of tears.
After I hung up the phone I stared at the wall across from my bed trying to take in everything that had happened. Still asking myself “Why me?”
Why had this day that had started with so much excitement. That I had waited 42 long weeks (I went over due) for, turned into my worst nightmare.

I wasn’t meant to be sat scared, frightened and alone in a room. I was meant to be getting to know my child, kissing her little fingers as she grasped onto mine. Watching her yawn and wriggle as she realised she had more room to grow. I was meant to be holding her and protecting her. Not leaving her when she needed me most.

I felt like a failure!

Because of this I have been unable/avoiding my blog, because every time I think about the day Baby was born. The day my amazing, strong and beautiful little girl entered this world. I find myself holding back the tears as all those emotions I felt come flooding back and I’m helpless again.

Luckily I just need a smile from her or she shows me something new she has learned and they quickly disappear.

But the guilt I feel doesn’t go as quick. My guilt for being scared, for being terrified and for not being able to help. That lingers a little longer.

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For all the fear and worry I felt in the early days. I have been given an amazing little miss and I can’t believe she is going to be 1 in a few days.

Here is to many more to come ๐Ÿ™‚

Nikki โค