A reminder popped up in my phone today was 13 years since my dear Nan passed. How I miss this woman, she was such a character, always up to something. She was such a big part of my childhood from holidays we spend together filled with nights in the Sun centre in Rhyl to the nights at the local pub. My Nan was a madam, she would tell you as it was, how many times she told me I should be nice to my husband because I was lucky to get someone to have me. Now this could have been hurtful but with my nan you knew it was meant with love. My girls loved their great nan and she loved them even if she refused to call Eden by her given name, “evil edna” she said due to my child’s fiery temper, I guess at times that name certainly fitted. I miss my visits with my Nan even though after ten minutes she would be asking me when I was leaving or “do you have somewhere else to be”. She had her ways and her charms and I loved the very bones of her.
I cant actually believe its been 13 years now, I remember the day as vivid as if it was yesterday. It was a hard day, Livvy was suffering with her seizures and reflux, I was so tired and my husband had just started a new job that was leaving him exhausted and grumpy. I had dropped the girls to school and was home alone when the postman dropped four letters through the door. Isn’t it strange that I can remember it was four, one from the bank, another the council the third was junk mail and the fourth was from the children’s hospital. It was now a month since the neurologist had told us that Livvy had Rett syndrome and I was slowly trying to get my head around the diagnosis, trying to understand what this meant to us as a family, what it meant to Livvy. I wasn’t in the right place then, I wasn’t in a good place. I was still so angry, so lost, so when I opened that letter my heart just broke, there in black and white was the official diagnosis the genetic test was back and the results showed without any doubt that Livvy had the mutation on the MECP2 gene and she had Rett Syndrome.
I couldn’t hide anymore, I couldn’t cling on to the last ray of hope, it was gone, it was true. I had the answers to the questions of her deterioration, her seizures, her movements but it was the answer I really didn’t want.
Dear Mrs Meredith
After seeing Olivia in clinic we send her bloods off for testing for the genetic mutation of Rett Syndrome, we have now had the results which confirm my clinical diagnosis. Olivia has Rett Syndrome.
We will arrange for a follow up appointment in the next few weeks but any questions you have please contact me on the above number.
Many thanks ???
No thanks, no thank you, not today, not this syndrome, not my Livvy.
I think i just sat on the stairs and cried, my heart breaking there and then. This wasn’t fixable, there was no cure and at this time there was barely any information and most of it out there was so sad, so scary.
She didn’t deserve this.
Why my Livvy?
Yes I remember this day so well, I remember Alan getting home early just to hold me tight, to hold each other. I think Alan had moved further forward with his acceptance since the clinical diagnosis but I needed evidence, i needed proof.
Well I had it now didn’t I !
I wish I could tell you that there and then I made peace with the diagnosis that I accepted Rett Syndrome into my life. I didn’t i just cried and cried.
Then the call came, my Nan had passed away, my beautiful nan’s heart had finally given up. I think that right then and there I would have happily joined her, I was so lost. How do I move forward knowing that there was a good change i would outlive my own child? How do you move forward with this knowledge?
All I know is that I didn’t want to be brave, I didn’t want to find peace, I was angry, I was hurting I was lost.
13 years ago,
My fears that day was realised I did lose my beautiful daughter to Rett Syndrome, I do have to live with the knowledge that I outlived my child, yet I know now how very blessed I am. I got to be Livvy’s mom, I got to walk through Rett syndrome with her and yes whilst it may have won the final battle for Livvy, I am not giving up on others. The beautiful girls and boys that are fighting this everyday, the heartbroken parents hearing this diagnosis today, tomorrow. I will continue to fight for this awful devastating disease to be no more.
I may have been lost 13 years ago, I may still grief desperately for my Olivia and my wonderful nan but I do take comfort today in thinking about the chaos they are causing right now in heaven. I’m quiet sure my nan would test even Jesus’s patience. I’m a hundred percentage sure that Livvy is causing mischief.
13 years feels like an eternity at times but right now this day feels a heartbeat a way and whilst I am allowing myself to reminisce I am moving forward with determination and hope. One day that letter will not fall through the door of unprepared parents and even if it does it will not come with the fear and dread that filled my heart, it will be filled with hope of treatment and a cure. One day this will happen.
I didn’t attend the Women’s March on Saturday, not because I didn’t want to, I so did. My heart, my soul walked step by step with all those standing up to be counted. I didn’t march because it’s been a hard few weeks and although we are out of hospital we are still recovering.
I followed social media with such pride, so proud of everyone that stood up and said no.
NO to racism
NO to Misogyny
NO to homophobia
As a mom of four amazing young woman I want them to grow up in a world that does not see their gender as second class. A world where they are offered the same opportunities as their male counterparts. A world where they are safe from sexual predators a world where harassment isn’t ok.
I want all my children to know it’s ok to fall in love with anyone of any gender, colour, faith. That the only barrier should be their own hearts. Where love is celebrated as two individuals without the stereotypical guidelines attached.
I want them to live in a world where the only person to have control of their bodies is themselves.
Equality, freedom these should be the right of all not a few.
I’m sorry I didn’t get to be part of Saturdays women’s march but I also know that this was beginning and there is so much more left to be done.
We have been woken, we are awake.
We have been running Livvy’s Smile for the last 8 years now, it certainly keeps us busy planning events, fundraising and generally getting awareness out there. This year is going to be especially busy with the planning and holding of Livvy’s Ball.
With so many charities about now its really important that we get our name out there, locally and further a field, we do this in many ways, social media campaigns, blog posts, news articles and leaflets. We want to share what we do with as many people as possible. Obviously we need support in fundraising but we also want to make sure get our events shared with families that will benefit and enjoy our memory making days.
Over the years we have invested heavily in promotion material some which have been fantastic some which have been extremely disappointing. So when offered the chance to review a printing company I was certainly happy to give them a go and I am happy to say I am so glad I did.
Working with Aura Print has been so fantastic the whole process has been painless from design to print to delivery they have offered first class service. We were asked what style, size and supported with the design. To be honest we had our base design but if we didn’t the company were willing to walk us through the design process step by step.
The quality of the print, paper and overall presentation of the leaflets is wonderful. The colours are sharp, precise and the text has clarity. I am really impressed.
I actually cannot wait to get these leaflets out into circulation.
So if you are looking for some A5 flyer printing I highly recommend Aura Print.
So it’s seems my little man loves the hospital so much he had to return for another visit. This time of course he had to up the drama level a little or a lot as the case may be.
The thing is I know the life I have chosen to live could get scary, that adopting a child with such complex needs could take me back to a place of such anguish, fear and pain, I do understand this.
Yet as I sit here in the hospital room after a few days of real fear all I am feeling is thankfulness. I’m so very grateful and honoured that I get to be by this little ones side when he struggled. So blessed that when he needed me I got to be there.
I know some people do not understand my life’s choices, they see the risk, the pain and understandably they could never imagine putting themselves through it and I completely get that. I can honestly tell you that this week I was petrified. Yet even now as I still reel I know how lucky I am and I don’t doubt or regret my decision to adopt this little one. I am counting down the days till he is officially mine, my son, my heart, my world.
Life is certainly going to be an adventure and whilst my life may be extremely different to others I am so very content, so very happy.
And whilst I understand why people ask me “how can I ” my answer will always be “how couldn’t I”.
This boy may not have been born from my body but he certainly was born in my heart.
So I’ve started my New Year in the hospital. Little man is not 100% but is improving unless to count the after effects of antibiotics and numerous nappies, the joys of being a parent.
I cannot actually believe we are heading into a fresh new year last year seems to have flown by. It’s definitely going to be a busy year, the adoption completion, two 16th birthdays a 21st and a daughter leaving behind her teenage years. It’s also the year Livvy should have turned 18th, I nearly decided to just wallow in my grief of this but I reminded myself of what she would have wanted. So I’m hosting a ball, a wonderful special night of music, laughter and friends old and new. We will be fundraising for Livvy’s Smile and Reverse Rett both in her honour. I’m hoping it will be an evening she will be proud of. It’s going to be on her actual 18th birthday how special is this. If you would like to come along and support the event please do, tickets are on sale now.
So yes 2017 is going to be a busy year and like previous years before I want to take a word with me to stand by me throughout the next 365. I’ve struggled this year to be honest choosing one, strength and determination came close but my chosen word for 2017 is Challenge.
I want to challenge my family to live a more fun adventurous life, getting out there and making more fun memories.
I want to challenge my health and self care making sure I look after me a little more.
I want to to challenge my marriage, it’s easy after 21 years of being together to forget to make each other feel special. I want to work at this with my husband, valuing each other, loving each other.
I want to challenge the government and fight against the devastating damage they are inflicting on communities and town around the UK. Everyone has the right to be treated with respect and dignity, families have the right to stay together and children and adults with disabilities have the right to be heard.
I want to challenge myself to say yes even when it scares me but also to say No when I’m overloaded or just not interested.
I want to challenge myself to accept invitations and to strengthen existing relationships but also let go of those that are unhealthy or just aren’t making me happy.
But mostly I choosing this word as I want to challenge myself to believe in me more. To value my own worth and to know that I can achieve great things.
So come on 2017 let’s see what fun we can have.
Sitting here in a hospital bay with a poorly little man is sending me on a journey of memories. Endless nights of observations, temperature checks and the general hustle and bustle of a hospital ward. I am so thankful for the wonderful NHS and all it’s amazing kind nurses and doctors and ward assistants and cleaners, yet I miss my Livvy.
I remember as if it was yesterday how she took over the ward, how she charmed doctors with her cheeky smile and how her laughter infected the nurses. The handsome Physio who melted her little heart. There is nothing more special that watching your daughter play coy with the man that makes her work hard to stretch and bend. Even having chest Physio was ok as long as it was with the cute one. I’m smiling to myself right now because I remember when the handsome Physio had a trainee with him a lovely lady he told her how to work on Livvy yet he never expected Livvy to be a stubborn, obstinate little minx she would have none of it, she turned over in her bed and refused to even look at this poor trainee. Five minutes later the handsome Physio came to check up on his trainee and well wow there were the smiles and arms wide open ready to work again, what a madam.
I feel her close whilst I’m here, I don’t know if is just the memories or the fact that it’s quiet and I’m allowing my mind to wander. But I feel her. I can sense her laughter, her joy for life. As I sit here and watch her new brother sleep I know she watching over him.
This hospital had been the place of many awful memories but it has also blessed me with some wonderful ones and some wonderful ward mates that became dear friends. How I wish A was here with me now, how I long to spend the night talking and giggling until we got told off by the nurses. We put the world to right over those camp beds. It’s New Years tomorrow how I wish Ryan and Livvy were causing us trouble and drinking my wine. Love you A and your beautiful family.
It’s a weird night and it could well be a long one. But I am so thankful for the wonderful NHS, how now whilst I may be wallowing in my memories they are caring for my little man. Working hard to get him well and home. I am watching him sweet talk the nurses with his beautiful smile. Pulling his tubes and giggling.
We are moving forward making memories that are different from how I planned but that’s life I guess
Yet whilst my heart will always have a missing piece I am so thankful for all I have in my life.
So very thankful.
I’m going to start this post with a truth, no matter how hard we try to deny it, it is simply a truth. Christmas when grieving sucks, it hurts, its hard and its so blooming wrong. No matter how far you are down this grief journey the fact that there is an empty space at the table, presents missing from under the tree and one less face to kiss simply sucks. There actually is no eloquent way to say this, “ it hurts’ “ The pain is deep’ IT SUCKS
Whilst I am super excited for Christmas this year and thrilled to have a new little one to share in our day nothing will ever fill the void, the emptiness that is left by Livvy. It doesn’t matter than I am adopting another child because he is his own sweet wonderful gift he isn’t and never will be a replacement for Livvy.
So how do we handle Christmas without those we love?
First thing is to be kind to yourself. I have pretended myself into a enormous amount of pain, hiding in the doing, slapping that great big fake smile on my face and acting like its all ok has only led to the pain of not being ok hitting me like a hammer, pounding deep into my heart. So first up we need to be kind to ourselves. I miss my daughter,my heart aches for my missing piece ,my arms beg to hold her just one more time. Its a pain like no other and by trying to pretend I’m ok I’m just making myself less ok. So be kind to yourself and acknowledge that it hurts.
Secondly, talk about them, honour them, do whatever you need to do to survive grief. Livvy is very much still a big part of our family, every Christmas we decorate her grave and on Christmas morning we visit with a big bunch of yellow glittery roses. Its not a lot but it gives me some peace. Her photo is on my tree and her stocking is on my wall. She is and always will be part of my celebrations.
Thirdly, give yourself time out, allow space for you to remember. I love spending Christmas afternoon whilst the kids are playing and the hubby is sleeping just spending time in my memories. Giving myself a Livvy hour allows me to acknowledge that I’m still struggling with losing her but also reminds me of how blessed I was to have her. Special time, special memories.
Fourth and most importantly, do whatever you need to do to get through this season. Ignore all that I have written or take away part of it. You see grief is different for us all, not one person will walk through it in the same way. The real survival technique is finding your own way. Map your own personal route. Christmas can be the most wonderful time of the year, yet it can also be the stark reminder of whats missing.
I want to wish you all a wonderful and kind Christmas, may you all have an amazing time, may your days be filled with magical memories new and old.
I’m having so much fun shopping for toddler clothes. The ranges have expanded massively since the girls were little. Little ones today can be full on style icons.
I am really enjoying sourcing out unique brands, companies that offer super different and original.
I was super excited when I came across the shop
I love it and little man does too.
*I was gifted the suit but the opinions are all my own.
You will read often how much I love books, how I love to get lost between the pages,go off on adventures full of adventure and excitement. I love reading with my children so of course I want them to join with me as we journey across the world into lives that are not our own.
I’m excited to share with you the awesome Watadventure a website where you can create a book personalised to your child. The personalisation goes well beyond their name you get to place your child within the pages, their colour hair, their hairstyle, their eyes and so much you. I absolutely love it.
The quality of the story in this book is amazing we get to off to India and see so many exciting things. The images in this book are first class and simply stunning.
These books are perfect gifts and we love ours. But don’t take my word for it go visit the site and look for yourself.
* I was gifted this book for the purpose of this review but my opinions are my own.