All posts by sara

Sixth form style 

So my daughter has just finished her GCSE’s and i was expecting her to relax and have a few weeks not thinking about school, tests etc etc. Erm no she is now driving me mad talking about her style for sixth form. You see she finally gets to escape the uniform she has hated for the last five years. The lovely burgundy blazer that can never be removed even in the hotest weather and the white blouses that never ever fit right.
Yet whilst she hated the uniform it was a comforting place to hide within. Everyone having to wear the same does stop the judgement, well a certain amount of it as anyone who has a child in senior will concur that teenagers will find any reason to argue and tease.

So sixth form is a big deal for my baby girl. Its a time for people to see her beyond the uniform. Its exciting and scary at the same time. She has to find her own style in the confines of the prescribed restrictions.

She is excited but nervous.

Last nights conversation was regarding her bag. For many years due to the number of sporting activities she has done she has always had to have a backpack of some sort, one large enough for sport’s gear, school books and drinks etc. So returning back to school with no sports obligations she can now  look at all styles. She is now wondering what would be best. This article by Mahi has been helpful “Tote or Backpack for college?” 

Whatever she chooses Im just hoping 6th form will be the where my girl can find her place. The place where she realises how beautiful and amazing she is whatever she is wearing and she learns that her style is whatever she wants it to be.

 

Writing when it hurts

Sometimes I get scared to write, scared to allow the truth to flow through my fingers. I preach about transparency and owning my truth yet at times my reality frightens the crap out of me.

Right now I feel on the edge of cliff I can see the rocks bouncing down the sides disappearing under the waves and I wonder how long this ridge will hold me. I can feel the erosion burning up inside of me, my will, my strength slowly crashing towards the water.

To say there is a lot going on in my life right now would be a massive understatement, the stress of exams on my girls has been worrying. Watching them tie up their hopes and dreams in pieces of paper is heartbreaking. Their value should not be decided by a cluster of standardised tests.

But this is the truth of life isn’t it?

We search for our own value in others judgements, others tests, others expectations.

I don’t want to do this anymore, I don’t wish to turn myself inside and out by the expectations my anxiety has created or those that don’t matter.

I cannot be all things to all people and cannot or will ever be perfect, yet i live each day berating myself for just this.

See this is maybe why I should have stayed quiet, yet a wise woman told me that truth can heal and that truth can set you free and that I needed to continue to write.

So here is my truth, the strive for perfection is an never ending quest, yet it also the biggest load of bull I have ever been told.  Perfection is a farce, something that can never be achieved, never be obtained. You see perfection comes with chains where truth comes with freedom.

Its ok for me to admit I am overwhelmed right now, to admit that anxiety is eroding my soul. That I want to run away from the world for a while or to simply just find some peace to calm my mind. It’s ok to admit I’m human, I hurt, I cry and at times I will break.

This is my truth.

Happy 21st to my firstborn

My baby is 21 today, how did that happen? Obviously i’m using the term baby figuratively but honestly how can it be twenty one years since i gave birth to my first born.  My beautiful entrance into motherhood came with lungs to challenge the strongest of divers, she came kicking and screaming and has lived her life at full speed ever since.

My blond haired mommy’s shadow has turned into an amazing young woman. I’m so proud of this girlie, she has just completed her degree and has already accepted a place on a masters. Her dissertation was so incredible and whilst her degree may have placed a lot of stress on her liver I love her thirst for knowledge.

This girl does drives me insane at times, she returned home this weekend for a few hours before flying off for a few weeks travelling around Europe, in those few hours she needed to wash and dry her clothes, pack her bag, complete her graduation paperwork and accept her place on the Masters, oh then of she mentions she hadn’t organised travel insurance. I promise I nearly strangled her. How she manages to achieve anything at times surprises me but i do love her carefree ways, well unless you count the other night.

Watching her grow up has been a gift I always remember her auditioning for her primary schools talent show. The shock on her teachers face when this powerful voice came from this little quiet one. She has been surprising people ever since, never underestimate the Kennedy. She has shocked many with her strength and determination and her sheer audacity to achieve her goals.

Right now my baby girl is in Vienna. probably drinking way too much but Im sure she is packing everything into her days.It’s weird not being there to celebrate her special day with her, not getting my birthday cuddle but I’m so excited for her to be off doing what she loves, travelling the world immersing herself into the history and culture of the places she visits.

Have an amazing 21st Kennedy, never stop surprising the world. Never stop being carefree and loving and living life to the full.

Love you to the moon stars and back again, my sweet frustrating first born Kennedy Mary xxxx

Expect 

Today has been a strange day i have placed my heart in places of vulnerability, places of pain, in hope of peace.

The realisation that to truly heal one has to allow oneself to feel.

To wait in expectation of the agony to know the rewards of joy.

Grief is an state of expectation, the cost of love or the reward of love.

The irony of that statement, pain the reward of  love.

The honour of love.

How often i find myself lost in the darkness of grief. 

I struggle to remember why it has to hurt so much?

Why my soul cries out?

Then a memory rises to the edge, allowing me the freedom of remembrance, 

the joy of loving

 and 

the trust of forever. 

Joining in with five minute fridayWrite for five minutes on the word of the week. This is meant to be a free write, which means: no editing, no over-thinking, no worrying about perfect grammar or punctuation.

Giving up blogging. 

I was ready to give up blogging. Preparing myself to put down the keyboard and walk away. I was tired of fighting to be heard in an ever increasing mass of voices. Exhausted by the endless distractions of reviews and  giveaways. 
It began to feel like a collective gaggle of the same old same old.

It didn’t feel like it used to. The pressure of statistics and keywords and SEO was drowning out my voice. It was as if my authenticity didn’t have a place.

I’m sure I wasn’t alone in this as i had slowly seen writers disappear from the ether. Returning to the privacy of their journals and the silence of their mind.

I was so close to joining them, so close to deciding enough was enough and allowing my blog to come to end. I couldn’t seem to grasp reasons for continuing or being able to validate the time needed.

I casually mentioned this decision to my husband who for some reason has never understood how the blogging world worked or to be honest never worried about the how. I told him I was tired of chasing opportunities, receiving emails that were insulting to my time, my worth. He was rather surprised at my thoughts and told me he would miss my words. I thought the sentiment was sweet but was it enough to continue when about five minutes later he turned to me and asked. ” why did you start blogging in the beginning”.

Why in 2008 did I feel the urge to share my words?

I remembered my first blog posts, I never wrote them worried about readers or views. I never had concerned myself with the number of shares the post recieved or the keywords it held. In fact at that time i didn’t even know of SEO (not much progress on that anyhow). I wrote to share my life, to share the struggles and the joy of raising a family. To be transparent in the life of a mom of a child with disabilities, the fear, the heartbreak but mostly the laughter. The achieving of moments that we will cherish forever. The can do’s  and the never say never’s.

My blog is a wonderful journal of memories. A incredible source of my heart. Yet how and why have Iet myself become so jaded and lost?

Comparison.

Somehow along the way I had started judging myself against others. Distracting myself from my truth with judgement and envy.

Why do my photographs never look that good?

Why couldn’t i explain that better?

Why didnt I get invited to that event, asked to apply for that opportunity?

Why and how became “you aren’t good enough”,your words suck and everyone is happier, prettier and generally better than you.

Every word I was writing was filled with fear of judgement. Every photograph waiting to be mocked.

I realised that comparison was stealing my joy.

I had a decision to make, I could stop right here, right now or I could reclaim my joy.

This new home is my declaration of my joy.

This new blog is my celebration of my renewed love of words.

This blog is mine, it’s a place where I will capture my moments. 

Where I will celebrate the adoption of my beautiful new son, where I can journal his wonderful life and our journey together.

My blog is simply that,my blog.

It’s my heart in words.

How can I compare it with others when no journey is ever the same?

The blogging world is changing at a rapid speed and that’s ok, life is and always will be ever evolving.

I will seek validation only in the happiness of my family.

My blog

My truth

My heart.

It’s not our choice

Having a disabled child wasn’t part of my life plan. I was shocked, confused and generally devastated at first. I had to slowly find my own peace with the life that I had and the disabilities of my child. But if I am honest there were times where I was frustrated and angry at the way her condition controlled my life.

I couldn’t holiday easily, we couldn’t get insurance to fly for a start and the fact  that there was always a high risk of cancelling, due to hospitalisation, illness etc.

I couldn’t work full time, there was no way I could meet all her needs, hospital appointments and therapies whilst being a productive employee.

I couldn’t have an evening out without proper planning in advance and hoping that I would get some respite that was few and far between.

At times I couldn’t even go to the toilet on my own without fear of her seizuring in my absence.

There were so many choices taken away from us all. 

But the reality is that my lost choices were nothing compared to what Livvy faced.

Right now my local council has decided that parents of children with special needs post 16 have to pay towards their transport to school. Their reasoning is that most parents have to pay when their child goes to college etc and that its only reasonable that we put towards this cost as transporting our children is expensive.

£600 a year, is this fair?

Lets look at this closely,

I didn’t choose my daughters school, I didn’t get to make a decision on league tables or the curriculum offered.

My daughter didn’t choose her school, she didn’t get to view different courses, or placements and come to a decision that was her’s. No the council and it’s professionals made the choice that this was the school suited to my child’s needs.

They didn’t consider the fact that every morning she would see her sister’s get up and dressed in a different school uniform and watch them leave with their friends.

They didn’t consider the fact that maybe she didn’t enjoy travelling 30 minutes each morning and afternoon to and from school.

They never considered that myself and many other parents like me struggle to be in two places at the same time often twisting ourselves up with guilt from missed performances, parents day and so much more.

No they made the decision on the best place to cater for her needs and I understand that. Yet why are we being asked to pay for something we had no choice in?

I am actually not saying that I have an issue with paying towards the service but I do think it should be in line with the costs I would have to pay for my other daughters. I don’t know many parents that have a spare £600 lying around and if someone mentions mobility to me again I may scream. Have you tried to fill the tank of a mobility vehicle on what our child receives each week? Do you drive to numerous medical appointments, pay for parking at so many hospitals for again reasons beyond our control, our choice.

Olivia didn’t choose to have Rett Syndrome, she didn’t choose to fight each day. She didn’t choose to have uncontrollable epilepsy and she certainly didn’t choose to lose her battle for life so early. 

I am so tired of seeing disabled people persecuted for something that is out of their control. Our children didn’t choose not to go to the local school, they didn’t choose not to be able to walk the journey on their own, backpacks on their backs as they laugh and joke with their friends.

They didn’t choose this life and as their parents we didn’t either.

Yet right now our local council are making parents feel as their children’s education is a luxury, a luxury that they have been funding. I’m sorry Walsall Council I completely disagree. You have an obligation to support our children with an education, the fact that these education placements are far and few between well that with your current funding and cuts to school is only going to become more of an issue and isn’t our fault or our choice. Do you not think we would love to walk our children to school, to chat with other parents on the playground, to be able to feel less alone in our already isolated worlds?

But before you harp on at parents already struggling to survive with reduced respite, reduced support,cancelled play schemes etc please remember this, these children, these parents they don’t have a choice.

Our lives, our children lives are far from what we had planned. When we celebrated their conception and decorated their nurseries we never imagined the lives we had yet to live.

We are trying, trying each day to make the best of it all. To love on our children with all that we have. To fight for therapies and support that will enhance their quality of life, and most of all we fight for their happiness, their chance to do whatever they dream.

Because whilst you may see them as expensive, we see them our hearts.

An artists dream

One of my biggest disappointments is that I cannot draw, craft or design. I so wish I could create something imaginative and interesting. I have to live my artists dream through the life of my cousin who besides being incredibly talented, is also extremely brave.  Last year she left her corporate position in London and moved to Folkestone to focus on her art full time.  A decision that i admire her greatly for, living her dream.

I hope I am right in saying Rebecca’s main art form is neon she has created some incredible pieces that have challenged and intrigued. Check out her work here or follow her on Instagram here. 

Recently she also opened up a physical and online artist-run gallery and design boutique gallery in her hometown of Folkestone.

SENTIENT: THE HOME OF DARK, WITTY, THOUGHT PROVOKING ART & DESIGN showcases the work of around 40 artists and designers.

The curators at Sentient have worked hard to select the artists and makers who best represent the Sentient style, aesthetic, themes and mentality. In particular, this means a taste for the dark, questioning, eccentric, deep and edgy in art, design and living. At Sentient, we wouldn’t exhibit nor offer for sale anything we wouldn’t happily have in our own homes (and indeed, do own works by most of the artists and designers at home). Nothing makes it to the gallery unless we love it.

One new addition to the gallery is the recent collaboration between Rebecca and Esa Evans.

Esa and Rebecca have collaborated to create these fun, contemporary and affordable necklaces utilising playful phrases Rebecca uses in some of her popular neons and prints. The font was built out by Rebecca to look like her capitalised handwriting, The necklaces are available in stainless steel or 18 carat rose gold plated options and are now available to pre-order, with first deliveries expected late May. Each will come within an embossed Esa Evans x Rebecca Mason box.

 

Right now Rebecca is offering my readers 10% off any order over £20 across her site including these stunning necklaces.

Use my code SARA10.

 

Go visit Sentient and check out the artists featured there,  including more collaborations Rebecca has done with other artists as I may be a little (lot) proud of my super talented cousin.

We have an Adoption date, but I need help?

I have been a little quiet regarding the adoption of our little man recently. You see since I wrote this post here about voicing my dream it actually felt as if my dream had crashed and burned.  Thanks to some missing paperwork from social services it has been delayed and delayed.

But finally its completed and now we have a celebration date for next month. Yes next month. I cannot wait, this little man will be an official Meredith. He has been my son in my heart for a very long time its nice for the paperwork to finally catch up.

I am so excited and seriously my smile could not be bigger. But if I’m honest the whole adoption process has been an emotional journey. Its left me anxious and at times really low. I think its because of this that I am finding myself stressing over the details of the celebration day. Obsessing over what we are all going to wear. I know clothes are  trivial in the big scheme of things but right now I just want the day to be perfect.

So i’m on the quest for an outfit for little man and one for me and one for Brodie my sixteen year old.

So I’m throwing it out to you all, help this plus size mama find something thats smart, pretty and comfortable for the court.

Help me find a really smart, super cute outfit for my little man size 3-4.

And something pretty but fashionable for my 16 year old Brodie.

 

So my friends and awesome followers, help me out with some outfit advice before I completely lose my mind.

 

How, why and what do we do?

I wasn’t going to write today.

My heart is broken.

I wanted to hold my children close and never let them go.  As a mom that has lost a child all I could think of is those parents whose hearts are now forever broken. Their children out on an what should have been a fun night  watching a pop star then cruelly taken away.

Innocent, every life taken last night in Manchester.

They did nothing wrong yet paid the ultimate price.

How did this happen?

Why did this happen?

Right now there is no answers, we don’t know the mind of the evil individual that took these precious innocent lives.

There is talk of reasons,

Was it his faith?

No, islam is a religion of compassion and peace.

He has no reason beyond hate.

Nothing makes this right, nothing.

It was a cowardice hateful attack .

Right now the terror threat level in the UK has been raised. The whole country is feeling scared, feeling afraid.

Many of us want to stay home, cancel events and I completely understand this.

What can we do?

We can love

 

We will  not allow terror to win, we will not bow down to hate.

We are a country of hope.

We will come together to stand together.

People of all faiths, no faith, will reunite against this hate.

We will remember the victims.

We will speak their names.

And may the name of the attackers fade into oblivion not giving them the notoriety they desire.

They are nothing.

They will  be nothing.

We are hope. 

We are peace 

We are love. 

 

My heart is in Manchester tonight.

 

 

My first baby show in 20 years

I attended my first baby show in over twenty years last weekend. To say I was a little excited is an understatement. I had won the tickets via a Facebook competition and once we got the ok from the hospital It was all go.

Saturday morning little man was  happy and well so we headed to the NEC. I wasn’t sure what to expect as my turtle is 3 in a couple of months. But due to his disabilities he is still in baby stages for many development milestones.

I had my mental list of things I wanted to check out and I have to say I managed to tick them all and some.

The baby show was well set out, plenty of room for pushchairs, wheelchairs and beautiful pregnant women.

The day was pretty awesome and one I so needed. I had a lot of fun and really enjoyed chatting to a lot of the store owners. I also loved spoiling my boy. I mean after all he had been through last week he so deserved a treat or two.

Our first purchase of the day was from the lovely Books and Pieces. The ladies were so lovely, after telling them that little man was blind they suggested some touch and feel books that he will love. The black and white books were suggested by our vision impairment teacher to encourage the little vision he has.

Our next stop was a store that caught my eye was Gigglemind  a company who have designed a car vision mat to inspire babies on journeys. Its a brilliant concept and one that caught my eye not for car journeys but because the colours are what we have been told to use it encourage turtles vision. I was so impressed by this product and as a special needs mom this was amazing as I had been looking at similar mats like this in special needs catalogues and the price difference is rather dramatic. Turtle is already enjoying his mat time. 

Due to his diabetes insipidus Turtle often has very dry skin and i have been searching for a skincare range that was gentle on his skin. Someone had recommended to me the brand Child’s farm so I was rather chuffed to see them at the show. They use natural free-from ingredients and essential oils to produce mild, kind and delicious smelling toiletries. Two bath’s in I am so happy with them. They are so light yet leave his skin feeling lovely.

A week ago Turtle had a Video Fluoroscopic  to check his swallow and after passing with flying colours we were given the permission to move forward with him and solids. He still swallows like a baby so it was important that we started with puree’s etc. For me knowing that he can only have a small amount of food I wanted to make sure that he had a quality product. I was really impressed by the Babease range. Created by a chef using the best quality locally sourced organic ingredients.  Turtle is impressed, and emptied his bowl rather swiftly.

My main reason for attending the baby show was to find myself a new changing bag. Turtle does not travel light and I really need a larger bag to accommodate his changing needs and the extras medical bits that we are now having to carry. After a wander around the show we settled on a PacaPod Mirano Black Changing Bag from Mummy and little me.  Its a lovely bag and seems to be working well. Stylish and functional.

I think my favourite buy of the day was a blanket from Babybird Blankets. Turtle cannot regulate his temperature so we have to have a blanket on hand at all times. The blanket is so beautiful.

I admit it felt a little strange being back at a Baby show, I had only been to one previously and that was when Kennedy was a few week old, she is 21 next month eek.

Besides the strangeness I had a really amazing time. I cannot wait for my next one.