First day

So it has taken me a week to write about Daniel’s first day at school and I’m still not sure I can find the words. I literally feel like my heart is split in two. So I’ve decided the only way to share the journey is to actually split this post in two.

So here we go, firstly my son is amazing he absolutely aced his first week at school and literally has me shocked. We were all jokingly taking bets on how long it would take him to feel confident enough to open his eyes and engage in what is a strange new environment. I was hoping for a couple of weeks, my girls thought months whoops. But my superstar decided he was going to make the most of this school fun and had eyes open and engaging on his first day. That’s right the first morning, I literally was in shock and if it wasn’t for the photographs proving it I may have not believed it. How amazing is he. He has literally loved his teachers, been in the hydro pool for the first time and attended his first donkey sanctuary session, way to go Daniel. I am so proud and whilst I confess to being incredibly anxious I do know without a doubt that he is at one of the best schools he could be at with some amazing staff. Did I mention how proud I was of my boy?

Secondly, walking back into the school that echoed with my daughters laughter hurt like crazy. The corridors she walked I was now walking her brother down. The staff that had loved her are now loving my son and whilst I never wanted him to go any other place the memories are still raw and painful.

I know Livvy would be so proud of her brother. I know she would have told him where to find the chocolate biscuits and I know she would inform him of the best arms for cuddles, yet I know she isn’t here to stand beside him as he starts his new journey into education. Still I believe she is watching over him, encouraging him to trust, to open his eyes and engage. I can hear her tell him “don’t be afraid, these are our people”. “They will love you as they loved me”.

I know she walked with me as I walked through the door, I felt her strength as I left Danny for his first day, but it’s still sucks that she wasn’t there with me.

Warrior Mama

It’s been a while since I  have written a Warrior Mama post, its not that there aren’t a number of amazing parents out there its just well its the school holidays and I am literally working hard on surviving.

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I really wanted to introduce to a woman who I am come to simply adore, I have followed her Instagram stories and posts for a long time, admiring not just her dedication and love for her daughter but her fighting spirit and desire to just laugh through the moments. Yet sometimes laughter can hide fear and right now I hope this Mama doesn’t mind me saying she is scared and to be honest rightly so.

Let me introduce to Grace.

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Grace is Mama to the beautiful Ami-Grace.

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Ami G has a smile that can literally fill your soul with joy. Her obsession for wheels and sticky sweets is something that tickles me pink. Get her in the paddling pool well pure heaven in a plastic ring.

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Grace is a Mama who has seriously had to fight to get Ami the treatment she has needed, behind that beautiful smile and gorgeous hair is Mama who is emotionally and physically living to love on her daughter. I cannot tell you how much I admire that. We both share the wonderful joy (the irony)  of chronic pain and exhaustion yet even in her lowest moments all Grace cares about is being strong, being enough for Ami-Grace.

I have been chatting to Grace for a while now and really do count her as a friend, she has lifted me and encouraged me in so many ways.

But right now its my turn to encourage and strengthen her.

A  few weeks ago Ami-Grace lost her smile, Grace knew something was up and regardless of pompous doctors pushed for Ami to be checked and investigated. Mama was right, Ami’s shunt is not working as it should and the pressure in Ami’s brain is mounting. The poor little cub is struggling, now on a hospital ward we are praying for a solution that isn’t brain surgery. I am praying hard for a reduction in pressure, for a shunt to start doing its job and for Ami to be home lining up her cars and sticky sweeting everything.

I ask as I celebrate this amazing funny warrior mama that all my readers join me in praying, sending thoughts, healing and love to this beautiful pair.

Grace I know you are scared but you have this, you are the ultimate warrior mama and someone I would always want in my corner. Ami-Grace you are one of the strongest girls I know, you have overcome so many obstacles and you will over come this one.

I stand beside you both and I am sending you so much love.

Warrior mama, Warrior child you have this xxxx

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Walking in her footprints.

We have just been away for a few days, a holiday with just Daniel, myself and Alan. It literally was a comedy of errors. Firstly I was supposed to meet up with the gorgeous Danielle and her beautiful daughter Evie but its seems there is a few hundred miles between Twynn and Towyn whoops. We were supposed to meet a family we love from our playgroup but it didn’t happen, everything just changed or maybe everything became how it was meant to be.

Due to my plonker-ness I was given time to be still, to refresh my soul, the freedom I find as I stare out over the ocean is something I cannot explain. Its as if I can actually breathe deeper for a little while. My heart beats to the song of the waves and my mind stays still just for a moment. 

My holiday may not have gone as planned but it was lovely. 

We visited the Talyllyn railway and travelled through the mountains on Douglas the steam train. Daniel loved it, the gentle movements of the train made for good napping but when the whistle blew he smiled so widely it was precious.

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I do have to shout out to the staff at the Talyllyn railway as they were so amazing, from the ticket lady who made sure we got the carers discount to the guard who made sure the ramp was ready for us, we were treated so well. There was no issue of the wheelchair they just wanted to make sure Daniel had an amazing time. I loved it, the actual fact that I had to sit for a couple of hours and just relax and admire the scenery was so needed. I actually think they could advertise the journey as a soul refresher as I left feeling lighter. 

We visited Barmouth on Wednesday and it was hard, the last time I had walked those narrow pathways was with Livvy. Gosh she loved the beach, my girls they played for hours. Livvy like a queen in her dingy, us nearly destroying her new wheelchair with salt water, she was there. As I sat watching the sea eating my fish and chips I could feel her. As we took Daniel for his first donkey ride I could hear her laughter on the wind. 

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As I watched Daniel trot up and down the beach I held on tight to the fact that he now stood where his big sister did. He got to experience what she did and I, well I  got to see and remember my children happiness. 

Making memories, holding memories close.

There are no right words

I was asked the other day by a friend If I could help her with what to say to another Mom who has just lost her child. My friend asked in kindness and wasn’t being insensitive she knows how open I am on the subject and she really just wants to be there for her friend.

I have often thought on this and whilst this is not a complete list here are a few of my thoughts.

Firstly what not to say

“Time is a great healer”

This is the biggest load of crock out there. Time does not heal anything, in fact everyday is one more day without those you love so it feels worse. Maybe we get stronger or what I believe we get cleverer at hiding our pain but time does not heal.

“They has a good innings”

Really a good innings? is there an ok age for someone to die? I’m sure people are missed even when they get to a 100 but seriously a child who hasn’t made adulthood hasn’t had a good innings.

“Well now he is free from pain.”

I’m torn on this one because I’m sure for some this brings them comfort but I find this used a lot with children with disabilities in the concept that there whole life is pain. Please use this wisely as yes my Livvy has Rett Syndrome and yes her seizures sucked, her abnormal breathing sucked but her life didn’t, she loved life.

“Well at least you had time to prepare yourself.”

I actually heard this be said to a friend whose child had been ill for a long time. It was if the knowing would somehow make it easier. It doesn’t, I wasn’t promised forever with Livvy yet this knowledge in no way prepared me for losing her. Losing a child is not something you can comprehend and not something you can prepare for.

“You are lucky you have other children.”

Yes I’m extremely lucky I have other children but they do not nor should not replace the one I have lost. Please just don’t go there or ever use this one.

“There is no disability in heaven.”

I completely get this and do honestly praise God for this but it does not help the fact that I wanted her here disability and all. Also for a person of faith like myself this trapped me into a guilt cycle, yes I know one day I will see Olivia again but that is not today and that hurts.

I’m not being flippant here I’m not, these are statements said either to me or to others in my presence. It is hard to know what to say, it’s a really fragile situation no matter the words. So it’s so important that people don’t use comments like this, I know most are said in kindness and uncomfortableness but the truth is they are not kind and being uncomfortable is not an excuse.

The truth is whatever you say will not bring any comfort, will not help the healing. Nothing can or will at this point. The loss is unmeasurable, the pain indescribable. Hearts are broken and worlds are forever changed. No day will ever be the same again.

If you really want to help a grieving parent just be there, listen if they want to talk, hold them if they don’t.

If they do have other children offer to take them somewhere for a while, sometimes especially younger children can not comprehend the impact of the loss and it’s hard on them trying not to be their normal energetic selves. Take them to the park to run around to be normal for a little while, this also allows the parents space to grief fully without trying to keep it together for the kids. Believe me I know this well, the shower became the only place I could really cry without upsetting the girls my safe place where I could unburden the grief from my soul.

Make food for the family, offer to walk the dogs, do some washing, shopping anything they need.

Or honour them with space if that’s what they require.

There is no right way or the right words as grief is unique to every one. It’s individual even family members, married couples grieve differently.

Grief is irrational and erratic it has no rules,no playbook and no preset dimensions.

I often heard people talk about the five stages of grief waiting for me to work my way through them but what no one actually tells you is that one day you may be on stage 4 when tomorrow you are relieving stage 2 all over again. It’s a constant roller coaster of emotions that never stops, there is not an off switch just like love, grief is eternal.

I told my friend to offer her friend love and to ask if there was seriously anything she could do. To hold her friends hand or hug her tight but above all to speak her child’s name.

Acknowledge the missing piece, tell her how much her child will be missed, it’s a disillusion that you are adding to her pain talking about their child because honestly you cannot. Letting her know how much her child has impacted your life and those around you will bring some comfort. Because believe me when your child dies you just don’t understand how the world carries on, how others lives just continue as normal. Knowing that your child will be missed means that they mattered and one of the greatest fears of a bereaved parent is that their child will be forgotten so please in the early days of loss, a year on, five, ten, fifty years on speak their name.

Speak their name, share your memories please don’t let their child become the elephant in the room. I love nothing more that reliving a memory of Livvy with someone, it never gets old.

Knowing that my beautiful girl lives on in the memories and hearts of others does bring me comfort.

I told my pal to just love on her friend, no false promises that it will be ok but just that she is there for her and to be there.

That’s all you can do.

It came again.

It came again, the thief in the night has visited another family leaving broken hearts in his wake. Day or night It doesn’t care how much damage it leaves behind he just steals pure beauty with no remorse, no shame. Mama’s arms empty, Daddy’s laps clear and siblings smiles lost. 

I just want to cry, cry in anger, scream in frustration, we are close to stopping this thief but close doesn’t feel enough right now. 

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Rett syndrome is a robber of so much, it comes first to kidnap their smiles, trapping them in a world they cannot understand, a world we struggle to be part of.  It plunders their mind carrying away their spoken words in his sack. Robbing our children of their breath destroying the stillness of their brains. Stealer of their peace. 

I hate it so much. 

I hate knowing that right now another family is forever broken, that they have a wound that will never heal, a missing piece, forever missing. 

I hate that others are scared to breathe deep, hoping and praying that their child will get through this next battle. 

I hate that another child has been diagnosed today, that another family are walking the pathway of fear. 

I hate Rett syndrome. 

I cannot hide behind the smiles today or pretend to be brave, Rett syndrome was what Livvy had and whilst it did not define her, it did steal her from me. 

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My thief in the night came and stole my heart and I couldn’t stop it. 

How I wish we could capture this pirate, I want to anchor it to the shores never to sail again. I want treatments, I want therapies and I want a cure. 

Yet I know this is too late for so many right now, 

It’s too late to heal forever broken hearts 

And my heart aches so desperately for all. 

Losing a child consumes you, the pain is beyond anything you can ever imagine. You don’t expect to survive it, part of you doesn’t want to. 

Yet somehow we have to, have to keep fighting, keep breathing, simply one breathe at a time. 

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It will be ten years in November since the thief in the night stole my beautiful girl from me and whilst I know we are close to stopping him we still have so much work to do. 

I am so proud of what Living like Livvy is achieving, educating, building awareness and of course raising much needed funds for research.

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Yet I know more needs to be done, we can not become complacent because Rett Syndrome is never content, enough is never enough for this evil syndrome. 

We have to fight, we have to raise awareness, we have to fundraise for research and treatment. 

Until the day comes when the cell doors swings shut on this thief, I will fight. 

Sorry I couldn’t rise.

I’m not sure where my head has been for the last few weeks, I’ve completely felt a detachment from the world. On the outside looking in. I’ve been falling into an abyss of what if’s, what should of been’s and to be honest a hornet’s nest of why not’s.

Social media has been full of graduations and moving on photos and I’ve just felt angry and raw.

Grief isn’t pretty, it doesn’t come tied in a pretty bow. A ornate basket with a jar of missing tears and bottle of memories.

No grief is a raging ocean, dark, bottomless and threatening to pull you under at the least expected moment and I’ve been drowning.

I feel such a bitch but I’ve scrolled past photos without commenting, without celebrating the achievement because I was angry, I was resentful because Livvy didn’t get to celebrate it.

I couldn’t drag myself up out of the pain to celebrate others when there will be no prom for my girl, no sparkling dress, no fancy shoes.

There will be no graduation for my daughter, she didn’t even get to complete primary school let alone head out of education into the great unknown.

I hate that I’m angry, I’m appalled at myself for being jealous but my goodness missing her hurts In a way I just cannot describe.

There is always going to be moments that are raw, moments that should of been and I’m always going to try and be ok about them but I’m never actually going to be ok with them.

There will always be a Livvy shaped piece in my heart. Always another tear to fall in missing. A breath to be lost in grief.

Rett Syndrome took so much from us, it took Livvy from us and right now I’m tumbling into grief, anger and complete sorrow.

I miss my girl, I miss her so damn much.

So to those who I haven’t celebrated this last few weeks I’m sorry. My heart does sing for your moments, I’m so very proud of all of you and I’m so sorry. Sorry that I couldn’t rise from the depths of missing this time, sorry I didn’t have the strength to pretend.

I just miss my beautiful girl so,so very much.

I could never imagine…

I have often mentioned how grateful I am for the NHS and even with the current governments cuts to equipment and services it still is one of the best institutions in the world. Yet as a mom with a child with a very complex disability I cannot imagine or bear to think about if he had been born in a country that didn’t have access to such a health service or if he was one of the many refuges fleeing their homes to escape violence.

Right now hundreds of thousands of Rohingya refugees are living in overcrowded, makeshift camps. Food and medical care are in short supply and the threat of disease is constant. The situation for many people with disabilities in the camps is desperately challenging.

“Rohingya crisis – humanitarian emergency

To escape brutal violence in Myanmar, over 850,000 Rohingya refugees have fled across the border into Bangladesh.

The Rohingya people are an ethnic Muslim group who settled in Myanmar many generations ago. But in 2014 the authorities retracted their citizenship, sparking a regime of oppression.

The speed and scale of the crisis has led to a critical humanitarian emergency. Refugees were forced to flee with very few possessions and many arrived in Bangladesh with nothing.”

 

This situation in itself is very frightening but imagine not being able to walk, communicate or understand what is happening to you.

This is 3 year old Haris, he is younger than my Daniel but what he has had to face is more than most adults could handle. His family had to leave their home when neighbouring villages were burned. His disability makes walking difficult, to get around, to use the toilet or to do what all 3 years olds should be able to do, play with his friends. He now lives with his family in one of the refugee camps in a tiny shelter made from bamboo and plastic sheeting.

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Thankfully Haris is receiving support from the amazing charity

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But more like Haris are in great need.

 

Meet Abul, he is 60 years old he was a farmer. He arrived in the refugee camp with nothing, fleeing his home when violence erupted. Abul has a visual and hearing impairment and found adapting to life in the unfamiliar, chaotic environment extremely difficult.

 

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“We left everything behind and fled for our lives empty handed….[arriving in the camp] I was in a lot of trouble as I could not see or hear properly. I couldn’t understand what people were saying.”

 

I cannot imagine what Haris and his family has faced, what Abul has faced and what thousands of others are facing right now. What I can do is support CBM with a donation so that people like Haris and Abul can get the support they so need. I can also ask you to do the same, please consider joining me and supporting the overseas disability charity today.

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