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.

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.

This is not his story.

Daniel has been adopted now for over a year and because of this it was time for the social workers to step out of our lives and allow us to move forward as a normal family. Part of the adoption support was the creation of a life-story book for Daniel and what they call a later in life letter, a synopsis of what had happened and how he became to be adopted. These letters are the child’s right to know their history to be given to them when they are at an age of understanding.

Daniel’s letter broke my heart, I thought I knew most of Daniel’s journey, but I hadn’t a clue. I knew he had faced numerous medical procedures but 26 operations before his 2ndbirthday, well that simply sucks. The number of foster placements he had and the amount of time he spent in hospital all more than one child should ever have had to face. The pain and the fear he must have felt is something I have really struggled with over the last week or so.

Livvy faced a lot in her life, regression, seizures, breathing issues and more but throughout all this she knew we were there for her, knew how much she was loved. Livvy understood that we were walking alongside her and that she didn’t have to face anything alone. It’s this I am struggling with for Daniel, how alone did he feel?

My faith is my strength but for the last two weeks I have been so angry at God and at the world.

It’s a strange situation I have found myself to be in, everything has really got to me and I have found myself raging over the stupidest of things. I was angry at Alan for being seemingly ok over this new found knowledge, angry at family members for not grasping how hard this is, not wanting to acknowledge what he had faced and even angry at complete strangers who would moan of the simplest of things, wanting to scream “What the heck, try living his life for a moment”.

Being angry at God is something I struggle with, it just feels wrong, yet I was so, so very furious at him.

If we were to be part of Daniel’s future, why the heck couldn’t he have gotten him to us earlier?

Why so many operations?

Why so much pain?

Why so much fear?

 

Yesterday I was sitting in church listening to the worship when the words being sung finally started to sink into my soul and I realised that ;

Daniel was never abandoned by God,

God never left him.

IMG_2204

Right there in those numerous operating rooms God was with him, as he fought against the brain bleeds and the meningitis God was with him, and when professionals were making decisions for his future, God was with them.

Daniel was never alone.

Daniel was never on his own.

When we received the call asking us to have a fostering placement for a weekend God was with us. He was in the Yes that I found myself saying, he was the one that placed adoption on my heart so many years ago ready for Daniel.

I still don’t understand why Daniel has had to face so much, just like I will never understand why I had to lose Livvy, but I do know without a shadow of a doubt that God is with us always.

As the words of the worship began to soothe my heart I realised I was free from the anger that was consuming me. Free from the what if’s and free from the past I couldn’t change.

I was overwhelmed by how much God loves Daniel and me. How blessed I am that however hard Daniel’s journey has been we are so very blessed to have found each other.

I don’t have all the answers but that’s ok, I have faith and God’s promise.

I actually shared this at church yesterday, something which scared me like crazy, but I am so glad I did, because Daniel’s story and my story of fear and anger actually spoke to a number of people and they shared their journeys with me. Their sharing allowed me to realise that whilst I don’t believe things have to happen for a reason, beauty can be found in ashes. How many of us have felt completely alone and so far from God? It’s hard in the midst of pain to remember the promise that we are never alone.  

Daniels past is not all of his story.

Every day is a new page yet to be written and I am so lucky I get to be part of his story.

I get to see all that God has planned for Daniel, the hearts he will fill, the spirits he will move and the smiles he will bring.

My boy will change the world.

I’m so thankful I get to be his Mom and I’m so excited for his next chapter.

Let’s get writing

1X2A2464b

 

 

A year today.

I cannot believe it has been a year today. After what seemed like such an endless wait our boy has been officially our son for a whole year now, where has this year gone?

20170627_152804

From the moment he came into our lives I knew I loved him and the professional detachment I was supposed to have, was completely lost. Yet still I never allowed myself to hope, to dream that one day he would be officially my son.

DSC_0434

 

I remember this day last year so vividly, everyone kept congratulating me but I couldn’t accept it, not until the very moment that the judge signed those papers. I was scared to dream, scared to hope, scared to believe until that paperwork was in my hands. I can still remember how I felt when he was introduced as our son. It was as if at that moment my resolve which wasn’t that strong anyway was lost and the overwhelming emotions of love was poured into my heart. I remember this feeling when having the girls, I loved them and was so excited when carrying them but nothing prepared me for the moment that they were placed in my arms, nothing prepares you for the intensity of love that you feel.

Daniel collage

Wow a whole year and what a year it has been, my gosh I love being Daniel’s Mom. The novelty of introducing him as my son is still as new now as it was then. Just saying his new full name still makes me smile.

I have so enjoyed watching him grow and develop this last year, watching his character emerge. From the little detached baby into this cheeky, mischievous toddler.

I love being a mom and I love being an adoptive mom, although some find it hard to believe I can honestly say that there is no difference between the children born from my womb than the one born in my heart.

Daniel is such a gift, his smile just blesses my heart its crazy, getting to love on him is well just wonderful.

How did I get so lucky?

1X2A2453

Adoption is such an incredible thing, it’s a journey of so many emotions. I have laughed and I have cried but now here a year on I am so thankful for this journey. Whilst at times it was so hard and I felt so scared, Daniel is so very worth every moment of fear, every moment of doubt.

All I can say to anyone right now, if adoption has every been on your heart please consider it. Yes you will give a child a forever family which is amazing but the gift that you receive is so incredible.

Hearing my precious boy call me Mama will never get old.

Happy One year of being adopted Daniel, thank you for giving me the greatest gift of being your Mama. Love you to the moon, stars and back again.

Lots of love and rainbow kisses, Mama xx

1X2A2464b

 

Living like Livvy

So it’s finally here, a years worth of work, a lifetime of memories all collated together in “Living with Livvy.”

I’m so excited to share my girlie with you all, for you to read and learn how incredibly brave and courageous she was. I’m also feeling extremely vulnerable as well. Here in these pages I have not held back, I have opened my heart and my soul and its laid bare for you all to see.

It’s not been an easy journey, i have returned to places in my mind I was trying to hide from. Revisiting some of the hardest moments I have every faced.

Yet it will be worth it, if this book educated one more person about Rett Syndrome if it raises more funds for Reverse Rett Uk it will be worth it.

So people, I am laying out my heart and soul here for you all so please, please support me in this venture. Go visit Amazon and purchase my book and help me raise much needed funds, help me help those working tirelessly to one day have Rett syndrome cured. One day have this diagnoses be one not of fear.

It can happen and it will happen,  let’s help  make it so.

Please visit Amazon and purchase the book, please let your friends, family, coworkers know about the book. Share this post on your social media, lets get “Living like Livvy” out into the hearts of minds of everyone. Lets make Livvy”s legacy really one of hope, lets do her proud.

No drama

I had a friend once, I use the term friend rather loosely now but then she was what I would class as dear to me. We had walked though a lot together and I assumed we would continue to do so.

Then when in the midst of Livvy’s regression I was crying down the phone to her when she uttered the words that have scarred my heart for such a long term “I swear your life is like a trashy soap opera, everything happens to you, or maybe you just like the drama”.

I remember the impact of these words as if it was yesterday. How anyone could believe that this was the journey of life I had wanted to take was beyond me but to accuse me of being dramatic hurt. In fact it hurt so much that I shut down, I didn’t allow my feelings to show. I closed the door on that friendship and many others in fear of judgement.

Why am I telling you all this?

Because I am in a place now where I am ready to own my own story. Ready to embrace what I have lived, not with echoes of shame but with pride.

Having a child who was born with a debiliatiting condition was hard but not knowing what it was and not expecting it was literally a nightmare. I cannot find the words to explain how painful it was to lose my daughter to Rett Syndrome, twice. Watching her eyes leave my face, her words disappear from my ears and her movements lost to the stereotypical.

To see the fear in her eyes as she screamed and screamed, crying out for me to rescue her. It broke me in inside, I cried out to God so often to heal her.

But he didn’t.

Yet slowly and surely he healed me.

I finally began to embrace the journey I was set upon, although it was very different from anything I could have ever imagined it was full of wonder and joy.

Joy, does that surprise you?

My daughter had a severe devastating condition, my son has a very complex disability but both of them loved, loves life in a way that brought, that brings me so much light.

It’s took me a long time to get to a place where I don’t apologise for what some see “as drama” in my life.

I have surrounded myself with people who get it or who try to understand it.

I have walked away from those who don’t or who don’t want to.

I can accept that some people cannot understand the life I lived or now the life I have chosen and that’s ok.

We are never going to be a typical family and I am embracing that, celebrating that.

Yes at times I am lonely and I do get sad at having to apologise for another missed get together, group activity or friendship meal.

But my children will always be my first priority, always my heart.

I don’t know if my friend understood the impact of her words or how they would change me inside. Maybe it was meant as a throw away comment that wasn’t supposed to find roots and bury itself deep.

Maybe it was my state of mind back then that fed and watered these seeds of deceit.

I don’t know and I actually don’t care.

Because I’m not that person anymore.

I cannot say that harsh words don’t still sting or dig deep in my heart, but they don’t get to stay and or get to take root anymore.

I am stronger than I have ever been.

I have faced the darkness of death and my memories, love brought me the light.

I face the suffocation of fear but my sons smile breathes air into my lungs.

My children are my world, they are the air that I need to breathe.

I am stronger for being their Mama.

My faith is stronger than my fear.

To love is to be vulnerable

I am in a little bit of a state right now, anxiety is winning the battle for my mind and my soul.

I hate that I get this way, I wish I could lie still in the peace of faith but I cannot. In fact I suck at lying still anywhere.

Tomorrow my little one is having an MRI which requires him to have a general anaesthetic and the fear of the ‘what if’s’ are just eating away at me.

Do I pack for more than a day? Can I trust he will be out on the same day as planned and the major one and the truth of my heart, will he be ok?

My head tries to remind me of how many people have this kind of a test each day, how its a simple non invasive test but my heart just is screaming “My son”.

Having a child with complex needs leaves you open and fearful. Your heart and mind goes to places many others never venture. Being a mom who has lost a child my mind has been there and lived it and somehow is just about surviving it.

So why do I do what I do?

This is a question I get asked a lot, mostly from parents who have children with disabilities or those that have lost a child. Why do I put myself back there. Why have I adopted, why a child with complex needs and why do I risk my heart again?

To be truthful I am not sure I have an answer for this question.I think we need to go back to the beginning. I truly believed I was a weird child, I struggled with emotions and worries before I even knew what they were. Sensitive to other people’s feelings to an extent that would have me cry myself to sleep with another’s pain. The world seemed a scary place and people often cold and distance. I didn’t understand people and to be honest I am not sure I actually do now.

I would watch people destroy each other with words out of hate, jealously or indifference and I just wanted to run and hide. I tried often to lose myself between the pages of a book preferring the lands of make believe to reality. When books didn’t work I turned to alcohol just to allow me the freedom from thinking, from caring. A few drinks in and life made more sense or so it seemed. But with sobriety came reality and my reality was that I was difference and that was something I had to find a way to accept, to understand.

I had to learn to embrace who I was and the ways of my heart. Understand that oblivion wasn’t a place I could stay or actually a place I really wanted to be.

I had to find what made me happy and that journey of self acceptance started with my marriage but mostly from becoming a Mom. I guess this reads as mush but I truly believe being a Mom allowed me the freedom to know and understand true love. Everything I wanted for my children was what I had always wanted for the world, It was a real aha moment.  But being a Mom is scary stuff besides having to feed, clothe and keep these little ones alive you are the window through which they start to see the world. I never wanted them to feel weird or difference. I wanted them to realise that they were unique, that each of them had been individually made with purpose. That they were exactly who they were supposed to be.

But guess what if my children were made with purpose and they are exactly who they are supposed to be then by default this means so am I.

Yes I may be a little weird or strange (I’ve been called) my heart may break more often than others and I may love with an intensity that seems insane to others but this is me. This is my heart and just as my girls were perfectly formed in my womb I was in my mothers.

I still strive for answers to questions others don’t understand, I think way more than should be humanly possible (my husbands words) but I am who I was meant to be.

I love to love. 

This is me in a nutshell.

I love the joy of knowing that someone understands how valuable they are, how they are a gift to my life in so many ways. I want everyone on the planet to know their true worth.

Happy clappy, airy fairy, who cares, I am who I am.

So why wouldn’t I be sitting here in a state of fear loving a child that was not born to me. The biology bit is irrelevant, God called me to be his Mama and I am so damned happy he did. Yes it’s scary, yes I am fearful but I am so blessed to love this kid.

Why did I adopt?

Why not, when there are children in this world that needs a home and someone to love them, why shouldn’t I. The complexities of anyone comes in so many difference forms, who cares, we are all uniquely and wonderfully made.

I feel C.S Lewis says it perfectly here, “to love is to be vulnerable” but after spending so many years of my life trying to stay in that dark and safe casket I can truly tell you that right now I am fearful, but I am living fully.

Anxiety, heartbreak and fear they are emotions that do and will often overwhelm me, this is part of who I am. Acceptance of these is still journey I am travelling. But non of these compare to the joy of living my life fully, how being true to my heart is freedom in itself.

So what it’s the weekend

Seriously it’s official if I see one more TFIF status today I may just lose it. 

So what it’s Friday that doesn’t automatically mean that tomorrow I get to do nothing. No tomorrow I will still have to get up to do medications and nappy changes. My back will still ache from lifting and if we follow on from our current evening schedule I will also still be sleep deprived. 


Oh it’s the weekend so that means my big boy is off and that brings me the joy of chasing him around and saying “please leave alone” every second for two days. 

All joking aside, ok moaning aside I do appreciate the end of a normal working week and that for many tomorrow and Sunday are days of relaxation but seriously stop rubbing it in. 

Please think of us exhausted parents those like me to who the weekend is just another day. In fact the weekend is actually a little harder as school does give me a little respite. 

I absolutely love my life and fostering a child with special needs is a great job but the reality of it is that it is 24hr, 7 days and week and 365 of the year. Being a mom of a complex needs child means exactly the same. So as a mom and foster mom of both I may be slightly shattered. Though as we enter the weekend of Mother’s Day I am so thankful for my boys. It just means at times I just have the urge to strangle those who write TFIF. 

Born in my heart 

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.

I’m exhausted both physically and mentally, my body aches and is craving sleep and my mind well maybe we better not go there. 

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.