A date I didn’t want in my diary.

When your child is born your mind is full of the moments that are coming. The special dates that will fill your calendar. You start planning for the celebrations, their first birthday, their christening, their first day at school. Your mind races forward into their future, will they fall in love, will they be happy? So many will they be’s just as it should be, yet no parents expects to add, when will I lose them? How do you add how to plan their funeral to this future planning list?

Yet when your child is born with complex needs these thoughts invade your mind even when you try hard not to allow them. You live in a constant battle between hope and fear.

When we were told by Livvy’s consultant that he couldn’t promise us forever our minds went to places no parent should ever have to go.

When we lost her, another date appeared in our diary. Not one of celebration but one of brokenness.

We do mark the day we lost Livvy yet I know others that don’t, they don’t want to dwell on the day they lost their child and I get that. Yet for me personally it would always be the elephant in the room, the day my heart broke into pieces.

We take Livvy flowers and decorate her grave, not in celebration but in appreciation. Thankful for the gift of being her Mama, for the wonderful nine and half years she blessed this world.

It may seem strange to some but the day we lost her is a day I have to acknowledge, an anniversary I have to remember. I have to allow my heart the space to break and my mind to grieve. It’s a day where I can admit that life sucks without her and I’m still annoyed the world keeps on turning.

It’s also a day where I remind myself how lucky I was to have her and how my journey isn’t finished. It’s a day I love harder on her sisters, her new brother and of course her Daddy. I hold on to the gift of life and the memories we have and those we have still to make. Make plans for magic moments to come. Places to visit, friends to hug.

Yet the only thing I can guarantee about this day is that I have no idea how I will feel and that’s perfectly ok. It’s a day I don’t have to enjoy, have to make special it’s a day I just have to be. To be whatever my heart needs it to be.

Whatever we need it to be x

Changing seasons

I’m not sure how I feel about change. I often find myself facing it begrudgingly. It’s as if I’m scared of rocking the boat, effecting the status quo. I’m so scared at times that I delay what needs to be done rather than put things outside of my control. Yet I’m usually the one telling others to reach for the adventure, push the boundaries, embrace the excitement.

Blooming hypocritical me.

November has been a month of major changes for me. My foster son has moved on after nearly eight years with us. I’m so excited for him and the move is so positive for all of us but it’s a change and I’m so lousy at change. It’s ironic saying this because as a foster carer your life can and does change over night. New placements join your family, some move on and it’s an every changing profession. I know this but it’s never easy. Even when the move is positive and families are reunited or forever families are found there is a semblance of loss that tears at your heart.

Yes you can see how you have impacted a child’s life. How you have been security in an insecure time. Your heart can be full and empty simultaneously. I worry if others will love upon them like I do, keep up to date with appointments, remember their favourite foods or the way they like to dress. It’s not that I believe others cannot love like me it’s just it’s hard to trust and hand over these special hearts.

Yet for us all there are seasons in life and as Autumn gives way to Winter I need to embrace the future and our new season. Excitement for the coming holiday and preparation for the next stage of our journey.

I know what is loved is never lost.

Who knows what the future holds for us as a family?

Who new may join our merry tribe?

What I do know is that whilst change is scary for me it is also exciting. A little flame is building in my heart for our next adventure, wherever, whoever that may be.

Still we fight

Today is the end of Rett syndrome awareness month. Yet for so many Rett syndrome is something they live with at all times.

Rett Syndrome is in their lives forever.

After losing Livvy, I guess I could have walked away from Rett syndrome but the impact of this devastating syndrome would still haunt me. I couldn’t hide from Rett syndrome it had robbed me of my daughter. I couldn’t avoid Rett Syndrome because it still tortures so many that I love.

Right now in this world too many girls and boys are losing their battle to Rett syndrome. Right now too many are fighting hard against Rett Syndrome and right now too many tears are falling for Rett syndrome, missed moments, broken hearts and painful memories all at the feet of this evil condition.

I’m often asked why I still fight for awareness and for a cure for this devastating condition. Why I still allow myself to feel pain because of Rett Syndrome and wouldn’t it be easier to walk away from the community that I don’t have to belong to anymore?

I’ve said it before and will say it again, my fight isn’t over yet. I will fight until one day there is a cure for Rett Syndrome, it’s as simple as that.

Yes; I lost Livvy to this evil and like many who have lost a child I want to attack what killed her. I want to personally wipe Rett Syndrome from the face of this earth. I want no child’s body to broken by this condition ever again. I want no other parent to have to cry themselves to sleep after watching their child suffer at the hands of this evil and more than anything I want no other parent to face the pain, the torture of losing a child to Rett Syndrome.

But mostly I fight for the ones I love, for Brooklyn, for Grace , for Sophia, for Charlie, for Amber, for Estelle, for Beth,for Olivia and for every child that has the Rett syndrome diagnosis.

I fight for them.

I fight for my Livvy, because she would want me to fight to stop her friends from suffering, for their mommies and daddies to not live in fear, for their siblings not to ever have to say “my sister died” for no one to have to face the pain of loss again due to Rett Syndrome.

Part of me wishes desperately that I could live in a world that never had to hear the words Rett Syndrome again, but it would be like “he who should not be named” of Harry Potter, it’s evil would grow and grow in the darkness.

So no I cannot hide away until Rett Syndrome is brought out of the shadows, until everyone knows it’s name. Until funding is given and medical research is made, until a cure is found.

Until that day, we fight.

I fight.

Are you really my friends?

I’ve been honest here before about my struggle with friendships. How my awkwardness and self doubt has often left me pulling away from friendships. The fear of losing people has often led me to push them away.

I know why I do this, but stopping myself is a whole other battle.

Anyhow I was asked the other day about why I talk about my internet friends so much? Also are they really my friends?

So are you?

I’ve never been the best at friendships, never one for big groups. They just required too much brain power and for me to be out of my own mind more than I was willing. Family commitments and having a lot of siblings just never made me feel the need for large friendship groups. Also the dynamics of social groups mess with my mind. Cliques, status I simply couldn’t be bothered or understand. I often just don’t get people and social situations and I’m lousy at small talk.

So hello internet.

For someone who hates talking on the phone ( a whole other blog post) I found online forums to be freeing. I could chat to who I wanted and when I wanted. The groups were those with similar interests as me or similar lives.

First it was the special needs forums then with Livvy’s diagnosis it became the Rett community and then unfortunately I found myself in the bereaved family forums. All people willing to chat, support and guide me without any pressure on me to be anything but myself.

Then hello social media,

Wow I loved it, again I was given the opportunity to develop friendships with people miles away from me who just got it. Rett moms who cried themselves to sleep after watching their daughters seizure, parents trying hard not to lose their minds with their teenagers.

It was great, until it wasn’t.

I’m not sure what happened but losing Livvy changed the way I viewed the world. I couldn’t do arms length anymore. I needed close, deep friendships but I wasn’t ready. Emotionally I just couldn’t invest time or mind-space into others. I needed to heal, love on my girls and I suppose be a little bit selfish. I couldn’t be compassionate when my heart was broken. I’m sure many other bereaved parents will tell you that one of the hardest moments after losing a child is when you realise the world continues on without your child in it. I struggled with this so I hid away until my anger subsided enough to let me live again.

Hello hashtags

I laugh when writing this but Instagram and hashtags became my best friend. Literally a search engine to likeminded people. I love them, how many times would you expect #seizuresuck to appear, more than you imagine that’s for sure.

#Panhypopituitarism

#hydrocephalus #diabetes insipidus, #cerebralpalsy, visionimpaired #hypothalamicdysfunction #epilepsy

#Chroniclungdisease

#specialneeds

#complexneeds

#disabilityawareness

These hashtags have brought me in contact with some amazing people and now I’m determined not to hide from the friendships I am forming.

I have come across parents with children with complex needs with such a love of life that I cannot help but be excited by them. Their energy is contagious and their children’s smiles so infectious. like myself they live to make the moments matter. Standing up against discrimination and showing that our children matter, all children matter.

I am finding that sometimes it’s easier to be transparent behind a screen, to admit you are struggling when you are not face to face.

I have also seen waves and waves of support literally lift people out of the depths and I’m so proud to call these people my friends.

Yes some relationships I have formed are deeper, some I literally feel are family where others are not so close but I’m equally thankful for.

Some friendships will stay behind a screen and that’s ok but others I’m nervous but so excited to bring into the real world.

But all I value, all matter to me.

So in answer to the question are my internet friends real friends? My answer is this, “Completely, I don’t want to do life without them. “.

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.

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.

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.