It’s just a little extra. Deal with yourself.

As my daughter is getting older, I’m starting to find my feet as a mom to 3 little girls. There are a few things that I’ve started to noticed lately and it somewhat makes me feel slightly uncomfortable.

I’m slowly starting to ignore the stares, The sympathetic nods, I make a conscious effort to not glare back or not give a sarcastic whimper, not sure why, as Evie is no hindrance on our life at all, (again we go back to the stereotyping, but those who no will no)

There’s one thing that’s annoying me now, is, my friends.

I do like my friends and this is not a post that want to slate them. It’s the overly niceness with Evie. I sometimes find myself squirming inside. Or to put it bluntly “listen she’s got down syndrome, she’s not a delicate little flower, she’s a baby, she will pull your hair, scratch your face, poo, (the most smelly ones) she will roll and pick at any wire that’s around, so you get my drift. Yet my friends are so over the top with her it’s bugs me. ‘Oh my god let me hold her’ ‘Oh my she’s pulling my hair ‘ you get my drift. At a party, lady’s fuss over her. Massively. To a point were I feel so uncomfortable. It’s as if they are saying ‘look I’m not prejudice against disabilities’ yet behaving like that only makes Evie stand out more. Her sisters must wonder why people are so over the top.

I’m pretty sure people that don’t really want to be my friend are because of my little Evie, I’m totally ashamed to say. (I no who they are but it makes them feel better so I put up with it)

Example of Facebook. My other 2, 7/8 likes. Throw in Evie and I’m up to 40. Amazing. Even if I threw one up with her not camera ready I’ll guarantee you it will throw me up more likes then ever. I call it the sympathetic likes.

I still have family that have not met Evie. The ones that celebrate all things down syndrome yet fail to see the one in their family. Ironic. They are so uncomfortable with what there reaction will be that they don’t want to see her.

I just want to put this out there. Just because you don’t coo over a disabled child doesn’t mean anything to me, but going over the top does.

I often wonder that people who behave like that are uncomfortable. They don’t know how to handle s child with special needs.

I just want Evie to be treated the same as her sisters. The same as any other baby, as friends behaving like this only makes her stand out more.

I don’t want her growing up feeling the indifference, feeling that everyone watches her with amazement, but somehow I’m not sure that’s going to happen.

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Does disabilities make you ugly?

I was told a few weeks ago, I was told I was lucky. Lucky that my daughter was pretty considering she has down syndrome.

For the first time, I never got angry, sad. I laughed very loud. It still makes me chuckle.

I pity the people that think like this. The lady thought she was paying my daughter a compliment, and in her eyes not at all offensive. But why cannot someone be pretty regardless of there disability status. Why couldn’t she say ‘Your daughters pretty’ Why is down syndrome ugly to other people?

I then thought about our culture. The demands to be pretty. The plumped up lips, tans, the perfect eyebrows, thick hair. Everyone looks the same.

When I was a teenager, I excelled in being different. I aimed at dying my hair as pink as it could be, to wear blue mascara (back then it was so 80s) to like different bands, hobbies. I purposely choose to be different.

I’m not sure I would have fitted in today’s society, and I doubt if I’d have been accepted. Or would I have followed suit? Felt under pressure to look the same as all the other girls?

Social media has turned beauty plastic. We live in a Kardashian world. They make money of their backside. There big lips. Everyone wants to look like them. Were does that leave my daughter?

I worry for my girl with beauty views like this. I hope she does what I did and celebrated her difference. To deliberately make herself stand out. To shout from the roof tops that she’s proud if who she is.

When I look at my daughter I see, my eyes, her tiny curls forming, her massive smile. I see my daughter, not down syndrome, She’s part of me, so she’s pretty because she’s pretty and her down syndrome should never be made to feel it’s ugly.

Its part of her and that I’d never change.

(only ugly thing is people’s attitude.)

Xxx

Letter to my nearly 6 year old

To my Bubble,

We waited four years for you to arrive, and what an impact you had on us. I never knew what to expect and you my little sunshine blew the cobwebs out of my life.

Watching you grow up, has had its ups and downs, Im not going to sit here and say its been wonderful as its not. Sleepless nights, the tantrums, lately the back chat, not doing as your told as ( you repeatley tell me) ‘you are your own person’, yet I cannot help admire you.

As I’ve watched you grow, I’m amazed at how your growing. Your little quirks, your smile when your fuzzing with excitement, your smile when your trying not to smile. Your complete strong head, the way you put your mind to things and never give up. The little games you play when you think no ones watching, repeatly playing the same song and singing it like you mean every word. The way you ask for huggles when your tired, the way you sleep with your flannel in your mouth still. How passionate you are for pizza! Your honestly, you always tell me if you’ve done something wrong as you know never to keep secretes from me. Your wild hair that you hate to be tamed! Your confidence when meeting new people, your so brave.

lately theres been other things I’ve noticed and that’s made me see you with new eyes.

Your sister.

When your met her at hospital, we never really sat and discussed her down syndrome until recently. Yet you fell in love.

As she’s got older, your completely protective over her, I left her on the side to push your sister on the swing and you ran over to her, and you started crying, as you felt no one was watching her, when I put you all in the car you got out and stood by her car seat until I got her in the car.

The little things I’ve noticed. you don’t see her down syndrome, but you seem to have developed this protectiveness, the way you learn all the makation signs and show me. I’m amazed at the wonderful human being I’ve created.

I’ve always worried about Evies down syndrome, and society. But with you by her side, I’m not worried, as seeing you grown into a compassionate, kind little girl, I’m so proud of you. and I never thought I could love you any more.

so, happy nearly 6 birthday by bubble, your amaze me, and I’m honoured to be watching you grow and be your mom.

xxxxxxxxxxxx

Giving ourselfs a break

I went to my usual playgroup today, and seen a stressed out mom, trying to console her child who was having a tantrum. As I approached her I realised she was crying. I could see the embaresment she felt.

As I sat and spoke to her, I told her our horror stories, of screaming toddlers. I told her about my rubbish morning trying to get the kids out of the house on time for the school run. ‘You appear like you have it so together though’ she whispered.

Appearances are deceptive. while I think I look stressed and harassed to another mom i look cool, calm and collective when this is so far from the truth.

I had a snooty look from a lady in Sainsburys while shopping as my children were loud. How dare they be loud. I’ve had the stares. The silly huffs of people. those people that i don’t know, hurt me. offend me. Yet to other moms we silenty say ‘yes someone else having the same tantrums, the same sort of day as me’ yet we fail to approach, fail to talk to that mom. fail to say ‘hey, I’ve been there’ we leave it and silenty high five them.

its the same with social media. even the people i love, who write and seem to spend so much time on social media documenting their everyday moments, and how wonderful it all looks, and what an exciting life they lead with yet another trip to Disney Land while us normal people are struggling with the school run and washing up constantly. Thinking of what to cook for dinner, then getting annoyed with your self that perhaps your not giving your child enough veg, or fruit. wondering if the next pay will last and what you can buy for the kids, forgetting that your knickers are thread bare.

we look at social media and people around us and feel that sense of self doubt. we as moms give ourselfs a hard time. if babys crying its somehow your fault. forgetting that sometimes just sometimes kids are arsey, and can be mean, we forget that they are human to.

so next time you see mom struggling. Dont judge. Give a friendly smile, ask how she is, Offer a cuppa, just dont leave her there expecting her to read your mind. we are all human and sometimes that friendly conversation is the tonic she needs!

Tell it right !

I’m doing this for all the future moms. TELL IT RIGHT ! I was so poorly treated when I was told about my daughters T21. And I want the hospitals to learn firstly how to tell it right, and secondly to have the same level of care for ALL moms. Regardless of when they found out about T21, hospital or area. I do this for you guys and for the future of down syndrome. #tellitright

Please don’t stare at my mom

Please don’t stare at my mom, she’s having a bad day. I’ve kept her up most of the night, and she’s not having the best start to the day.

Please don’t stare at my mom. My sisters being naughty. She’s not listening today and refuses to be good. She’s keeps throwing temper tantrums, and running of. It’s not a good day.

Please don’t stare at my mom. She’s not washed her hair. I took so long to eat my breakfast, then my sisters got food everywhere.

Please don’t stare at my mom. She’s worrying again. She’s worrying about us kids, especially me again. It keeps her up at night, makes her really ill. She’s been on that doctor google again, and fearing the worse again.

Please don’t stare at my mom. She’s been running late all day. She’s feeling the little tears in her eyes, tears that never go away.

Please don’t stare at me.

My moms very aware. It’s makes her so sad you see. And sees the coldness in your stare.

Your lack of understanding or lack of being aware. It’s making mom feel uncomfortable today, it’s kinda rude to stare.

It’s only because I have my extra chromosome I look different. My mom doesn’t care.

So please don’t stare at my mom. She’s having a bad day. Give her a smile, a high five! She doesn’t need the stares today.

Searching

Sometimes I find life so frustrating. I get so much anxiety about our future.. The unknown. That scares me. Scares me that I won’t be prepared for the ‘what ifs’.

I find myself losing so many hours looking at my phone. Looking for my future. The what ifs, how, and whys. I always seem to think my future is on the Internet. The answers are there. They have to be.

There not.

I know that. Yet I spend endless amount of time searching. My phone has become my fortune teller. Yet it tells me nothing. It feels me with more anxiety, it leaves my mind with doubt.

There’s been times when I’ve gone out and see people that spend endless of time lining their kids up to take the perfect photo, for the world to see what a wonderful time there having. Then they turn look straight at their phone for the next half hour, ignoring the real life around them.

When my little Evie was born, I searched endlessly for her future. Of what it would look like. It gave me a bleak future. It gave me false information, yet instead of looking through my own eyes and living, I decided to fill my head with the Internet anxiety and wept with my phone in my hand.

I’m fed up of looking at the Internet for my future. I’m fed up of seeing photos and getting worried I don’t do enough. I’m not perfect enough. I’m fed up of getting ‘advice’ of doctor Google and never trusting myself to make decisions.

I’ve came to realise that sometimes it’s OK not to be prepared. It’s OK just to see how today goes. It’s OK not to take that photo, just enjoy those special moments for myself. It’s OK not to check everything on Google.

I worry for my girls growing up in this social media life. I worry they will search for the answers like I do.

Today, I’m making a promise.

I’m promise to not look for my future but to live today. What will be will be. For my girls. For me. For my anxiety!

Staring or asking? Which do you prefer?

As I’m finally finding my feet, I’ve started to venture to playgroups. And I’ve come across some things I’m not sure how I feel.

On Monday, I kept noticing a lady staring at evie. It made me feel a little uncomfortable but thought it may be me being a little paranoid.

Today, a lady approached me asking if I knew about evies down syndrome and if I had the test when I was pregnant. I got the feeling I was a pity party today. Introducing me to people, and in a sort of way explaining evie. I feel so sad that our society is like this. I just wanted to go to take my children out and then the down syndrome chat comes with it. I answered her polity and she was very nice, but then I came away feeling a bit, deflated.

I’m not sure if I prefer the stares or people asking. Both made me extremely uncomfortable.

I find it a shame that out society will automatically see a person’s difference. Not to just accept and get on with it.

If ever I’ve seen a disability I’ve always never really took much notice, and today it’s just hit home that my little girl is not always going to come across people like us.

I couldn’t work out which one of the things bothered me more, staring? Or asking?

Both.

It makes me sad it’s a notable thing. All I see in evie is her big beautiful eyes, a tuff of sticking up hair and a beautiful smile. I see my daughter. Down syndrome doesn’t exist in my eyes. But it does to the outside. I’m sure as time goes on I’ll get an elephant skin and it won’t bother me, but today it did bother me a little.

I hope I do get tougher and I hope evie will just be tougher then me. I hope when she grows society will be more flexible and not look at people for a difference then question it. I hope it just becomes normal and we don’t have to stare or question.

Perhaps we all can take a look at how we see people that are different and how we approach it?

The big heart operation

It suddenly dawned on me that I’ve not spoken about Evies heart operation. I’ve seemed to block it out. I try not to think about it.

Evie had a hole in her heart. We had to tube feed her due to calorie burning, get her weighed as often as we could. And basically I feed her up so she was big enough for the big operation. My whole days were surrounded with – PH testing, feeding machine, milk amounts. And most of all our days were surrounded by times. Times of feeds, how much, when next one was due. What could I fit in, in that time ?!

It was the hardest thing ever, giving your baby to the doctors that would be fixing her heart. I blurted out to ‘take care of her’. The operation would take 5/6 hours. I tried to distract myself. Not to think. Not to think the worse. That perhaps I’d lose this little girl. I was scared that I’d lose her. I think it’s every parents fear.

The operation was successful. And apart from a post op heart beat going way to fast, the medicine they prescribed did the trick.

Intensive care was not what I thought it would be. It was loud and everyone is on high alert. It was an intensive environment. (Hence the name)

When she went up to the ward, was my hardest battle. The days and nights all merged into one. You feel consently tired, and with all the beeping it was hard to get sleep.

I cried so many tears. Tears for everything. For down syndrome, for her battle scar, and I cried for feeling so scared. I still do. I still can’t quite think or talk about our hospital stay.

With all the machines attached to her little body, I was scared everytime I picked her up that the monitors would go of. I couldn’t relax. I was on high alert. The nurses never seemed to listen to me, and that eventually left me fearing of leaving her. I just wanted her home. I can make her OK.

The worst was the mom guilt. The guilt of leaving her to freshen up, or to spend time with my other two. The guilt that I left the older two. You never seem to get the balance right.

Then you sit and look at other moms / families. My God, so brave. So strong. Some had been there for months with no discharge in site. Yet they lived at that hospital. They sat day/night. They slept. I seen the worry on their faces. The worry everytime a machine went of. The joy, when there weight crept up, and there understanding when I wept. The comfort I felt, when I left evie for the night knowng they were there. My heart goes out to them. We forget about the hospital moms.

Evie came home after two weeks. Amazing. And I had a different baby back. No longer was she needing to be tube feed. She took bottles, she was awake, her little personality came though. I never knew how poorly her heart was. I never knew how it wore her little body out.

You never realise how you get through things you just do. And while evie sometimes fills me with worry …..she has taught me that she’s one fighter. I still can’t relax myself over her feeding. I still feel anxiety when I get her weighed. I get scared her heart will, I don’t know, it’s a fear that will properly take me a long time to shake of.

Evie on the other hand, is fabulous!

Down syndrome ‘presumptions’

As my little evie reaches the 6 month mark, there’s a few things that really annoy me.

I hate the patronising people I come across.

I had a play therapy lady come to our house – (as recommended by health visitor), and when she left I couldn’t help but think ‘is this a joke’? do they really think I don’t play with her? Do they think that down syndrome has made her not play? Or have any interaction? I treat her as normal as my others. I thought there must be a special way to play with her, I thought I missed something. Yet, there was no difference to my normal play with her. I kept saying she already does a lot, but the lady kept implying that evie will most diffently struggle in the future. (She’s most definitely not coming back again)

This made me mad

My 5 year old struggles as she’s the youngest in her class.

Does that impact the way we all treat her ? NO.

Yet soon as you label ‘down syndrome’ their whole life is predicted and no matter what you say no one seems to grasp it.

All children are different.

They all learn differently. They all do well at some things, and not so well in others.

Put the down syndrome label on, and that’s it, we got a future of predictions and a shed loads of no it all’s to deal with.

The way I see friends look, and give that ‘pity’ nod. They made their mind up. They think I don’t go out. They think Evie impacts so much in my life that I don’t have one. I see it in their face. I don’t see these people that much. Yet, they have made their mind up on downs syndrome. They have already predicted my life and hers. They already know her – without getting to know her. They know down syndrome. (They think)

The way people say “ah down syndrome kids are cute” – no most kids are cute, down syndrome or not.

Ah she’s always so happy! – yes. This is obviously because she has down syndrome ! That’s the ONLY reason a BABY can be happy. Obviously.

I will probably get more if this as she grows and I will continue to battle these views and presumptions and I’m sure evie will. The only thing I want her to do is to never be these ‘assumptions’ and I’ll keep fighting and getting mad at people that do have them.