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.

Rett Syndrome

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 

 

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 discrimination 

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 colour has no impact on people’s perceptions let people be judged on their hearts not their ethic backgrounds. There is no superior race just superior hearts.

I want them to live in a world where the only person to have control of their bodies is themselves.

I want them to live in a world where people with disabilities arent viewed and treated as second class citizens where support and help is giving freely for all to live fufiled lives. 

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. 

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. 

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.