Hello Sadness

Hello Sadness,

I wasn’t expecting you to visit but please feel free to stay a while.

I understand that many struggle to know you, but I’ve learned over the years that you hold honour in your hands.

How would I know joy if I didn’t know you?

How would I know love if I didn’t experience loss?

You are a time I have learned to acknowledge and accept. A time that allows me to grow.

I used to be so scared of you sadness, I felt by acknowledging your existence I was admitting failure. Yet I now know this was wrong. I cannot live in continuous state of happiness it becomes false and empty. Life isn’t all fairytales and unicorns.

I need to know you sadness, to learn to appreciate all that is good. I need to accept you to allow my heart to feel completely.

I confess though, I often don’t know what to do when you visit. The world does become a little darker, I become a little lonelier.

I worry about burdening my friends when you visit, yet isn’t friendship about sharing the highs and the lows?

I have found in my own transparency that others find the freedom to share their truth.

That they too, often worry when you come to stay.

Sadness you are my truth, you allow me to see what is good and what isn’t it my life. You give me the space and the need to fix the things I can change or to accept those I cannot.

Perfection is a myth that often becomes a noose around our necks.

The fear of failure which hold us back.

Yet to try and to fail, is at least to try.

Mistakes are life lessons we all have to learn.

I often get caught in the “should have’s or the why’s when my truth should be “with thanks”.

To turn my wants into gratitude.

I’m thankful for this day, this moment.

May this battle challenge me to be wiser, stronger.

May this “have not” make me appreciate more the haves.

May the cannot’s make me more thankful for the can’s.

So hello sadness, let me sit in you for a while.

Only for a while though x

Dear October

Dear October

You are one of the hardest months of the year for me.  You see, It’s Rett Syndrome awareness month and whilst I want to scream and shout everything I can about the devestatsting condition, I struggle.  You see, Rett Syndrome broke my heart, it is the thief in the night. It came and it stole my daughter from me.

In November it will be ten years since I lost Livvy, yet my heart still feels as if it was yesterday.

The pain is raw, the pain is open and the pain is incredible.

Yet it has been 10 years and in that ten years there had been hope.

Hope for treatment

Hope for a cure.

Hope that tomorrow no more children with be born to suffer from Rett Syndrome .

Hope that tomorrow no more will lose their battle to Rett Syndrome

Hope that no more parents will cry themselves to sleep broken hearted.

Hope for No more empty arms.

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So October whilst you may tear at my heart, I’m coming at you fighting. Together you, I and your 31 days are going to shout loud.

We are going to fight back and say, “No more Rett Syndrome”, no more broken hearts, no more shattered dreams and no more empty arms.

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So come on lets do this, lets make this campaign matter. Let’s start sharing our photos with our loved ones in our arms reminding everyone to make the moments matter but also sharing awareness of the condition that has left my arms empty.

Share your photos with two hashtags

#Nomoreemptyarms #rettsyndrome

Let’s get people googling Rett Syndrome.

Let’s get people learning:

QUICK FACTS ABOUT RETT SYNDROME

  • A debilitating neurological disorder
  • Predominantly affects females but also affects some boys
  • As prevalent as Cystic Fibrosis, ALS and Huntington’s
  • Babies lose acquired skills between 1 and 3 years old
  • Caused by a single gene mutation that leads to underproduction of an important brain protein
  • Most kids with Rett cannot speak, walk or use their hands
  • Another child is born with Rett Syndrome every 90 minutes
  • Potentially REVERSIBLE through reintroduction of the underproduced protein
  • Girls with Rett function mentally at a much higher level than previously thought

Let’s raise awareness and lets make this October count.

Please share your photo’s,

Do it, for those fighting this syndrome every day.

Do it, for the loved ones whose heart breaks watching Rett Syndrome slowly steal their children away.

Do it, for the scientists who are working so hard to one day cure this evil, help get them the funding they need for research.

Do it for me, help me make sure that one day no other parent has to face the pain of losing their child to this syndrome.

Do it for Livvy, ten years may have passed but lets keep her memory strong. Lets hold her light and shine it brightly.

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Let’s do this.

Let’s flood social media with the hashtags #Nomoreemptyarms #rettsyndrome

Lets get them noticed, lets shout loud.

Share one photo, share a hundred.

Share a memory, make a memory but lets make this October matter.

October we can do this.

Let’s go.

Love

Sara xxx

Not a thing

I know people mean well but sometimes I want to scream “shut the heck up. “

Only the other day I was having a conversation with someone who I have known for a while. I won’t say we are friends but we chat when we bump into each other. In fact sitting here now I cannot actually remember how we met but anyway hey ho I digress. Me digress what a shocker.

Anyhow we were chatting as you do when she turned to me and said “ I don’t know how you do it, I don’t know why you do it” then the clanger “you have to give up so much”.

Now before I seem like a complete bitch I know she meant no harm but the “it” she was talking about was fostering, adoption and ultimately Daniel.

Yet you see adoption isn’t a thing.

It’s a heart, a heart that you are promising to love, care and protect for a lifetime. It’s a web of emotions, a tangle of heartbreaks and brokenness that you have committed to hold in your arms and whisper I love you’s to.

It’s a gift, a blessing and hard work all rolled into one but it’s never about giving up it’s about getting so much more.

I know the questions was aimed at the special needs aspect of our adoption but Daniel isn’t his special needs, he is everything all squashed together into one adorable package.

I’m not going to pretend it isn’t hard at times it is but that’s ok, life was never promised to be a bed of roses.

When I met Daniel I didn’t see a list of conditions, it wasn’t the pages of hospital notes that won my heart, it was the way his tiny hand gripped my finger. Not opening his eyes or turning towards me just holding my finger tight.

My heart just opened and he jumped right inside, right then, right there.

He had my heart.

I knew it wasn’t going to be easy but I truly believe that the best things in life aren’t.

I know my friend didn’t mean harm and I wasn’t offended but this is something we have come across so many times. People telling Alan and I how amazing we are caring for such complex children. How lucky the children are.

Children in foster care aren’t lucky that they have a new home. Their hearts are broken and their souls sore. What they knew is gone and even if it wasn’t the best of experiences as they often aren’t It was what they knew, their normal.

Children who get adopted aren’t lucky, the parents who now get to call them their child are the lucky ones.

My girls, Alan and I, we know we are fortunate , we are wonderfully lucky that we get to love upon children that need it. We get to open our hearts and our home to children who need us. We get to love, care and cherish.

How incredible is this?

As for Daniel I haven’t given up anything to be his mama, I have been incredibly blessed that I get to call this wonderful little boy my son.

My heart, my boy.

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.