We need to remember what Livvy taught us.

I worry we are forgetting, not about Olivia herself but all that she taught us.

I can still see her in my mind clear as yesterday. Her blond hair that twirled between my fingers. Her cute mouth and the way it did it’s little Elvis curl.

I can hear her giggle at the silly things or the most incorrect moments.

Her teasing way towards her sisters, her daddy.

I can see it all and I’m so thankful for this but what she taught us is slipping through my fingers, through her Daddies fingers.

To make the moments matter.

This was what Livvy taught us, on the day of her diagnosis we realised that we didn’t have forever so we needed to focus, needed to revalue and we needed to make the moments matter.

We were never going to be wealthy enough for amazing trips but Livvy didn’t care less where she was as long as there was laughter in the air.

Give her a sea shore and splashing waves and she was content.

Give her a battered roe and couple of your chips and she was happy.

Give her your arms to snuggle in and she was in her moment.

Life has become a little forgetful as of late. The normal is invading into our moments a little more than I like. Laughter feels rationed and magical moments are becoming less.

I know we cannot live in a permanent state of magic but we do need a reminder of what Livvy taught us.

Daniel needs us to remember.

Yes money is tight and that always adds the extra weight upon anyone’s shoulders but money does not equate happiness and it doesn’t bring guarantees.

I want to remember the moments we shared.

I want to create new moments for Daniel.

Tropical hurricanes aside I want magical moments again. I want to laugh until I cannot breathe, dance in the rain, drink tea with friends whilst the night sky entertains us with star dances.

I want to throw Daniel into moments the Drs never imagined for him, defy odds and breathe life in deeply.

I want to remember what Livvy taught us and make her proud by being her best student.

I don’t want to forget, we all need not to forget.

Life is for living,

Living like Livvy.

I wish I had been there.

I read a post the other day describing the days of a premature baby in a neonatal unit and my heart broke. Not because Daniel was born at 26 weeks because my little fighter survived, but because I wasn’t by his side through it all.

How crazy is this that I’m torn inside by a grief, a guilt for a time I didn’t know. For a time when I didn’t know my boy. The idea of him facing what he did without me by his side breaks my heart.

The whole time before he came my son is one I cannot focus on. I cannot bare to think of the symphony of emotions he had to face alone.

I have read his medical file and my heart just tears, 26 operations before we met him. 26 anaesthetics, 26 procedures, 26 times I wasn’t by his side holding his hand.

I know it’s crazy and deep down I know it’s not my fault and I do just have to have trust in the journey but I honesty wish he hadn’t had to face one step without me.

I get frustrated when people tell me that he shouldn’t be as clingy as he is. I honestly ask them to walk his pathway and see if you didn’t want to hold on tight.

When the world has been full of procedures and strangers. Pain and suffering. When you cannot see who is picking you up tell me you wouldn’t hold on tight to the one you know, the ones whose arms to trust.

I’m so proud of this clingy I want my mom stage, because this means he knows I am always there. That in my arms he is safe.

I adore the way that when he is ill he only wants me it’s further testimony to our bond.

Mother and son.

I cannot change the past and that’s something I do have to let go. I’m just so thankful that he came to us and that his heart fitted perfectly inside mine.

The future isn’t mine to see and I will not make promises that I cannot guarantee but what I do know is that why my heart still beats I will be by his side, whenever he needs me that’s a promise.

Celebrating the gift of motherhood.

Mother’s day is a day of celebration, a day where we honour the bond of a mother and a child. The period of time you are a mother is irrelevant. Physical birthing isn’t a necessary. Motherhood is about loving someone more than yourself. Living and breathing for their dreams to come true.

I adore being a mother, from the moment I knew I was carrying my first child in my womb my heart has loved hard. I’ve made mistakes, I’ve messed up and I’m sure I still will but my children are my life, my world.

One of the hardest things I have faced as a mom is letting go, watching my children grow and flourish and become Independant and assured. Seeing them bravely love, suffer, face heartache and rejection. The overwhelming urge to take them away from painful situations, to stop them before they try. Yet as a mom I’ve had to let them be, to live is to learn.

I am a mom to four amazing daughters and one handsome son, each one so beautiful and incredible in their own right. Individual with their own needs, wishes and dreams.

My dearest Livvy is in heaven and whilst the veil of this lifetime separates us physically now. No time, space or worlds can separate the love of this Mom from her daughter. My soul craves for my girl, my arms ache to hold her. My heart will be forever missing a piece, beating with a broken melody.

Yet I would do it all again in a heartbeat.

Mother’s Day is a celebration and I have a lot to be thankful for. So I’m going to hold on tight to the memories, run forward widely into the future with the knowledge that the greatest role I get to live, is that of a mother.

How blessed am I?

Living to love

I wanted to write about this last week, explain what had happened with Daniel but for the first time in a long time I just cannot. I cannot find the words to describe the fear, the words needed to give light to the darkness.

Let’s just say I was scared, frightened to the point where I couldn’t breathe.

I’m so thankful for the outcome, thankful I got to bring my boy home but I think it’s going to take time to actually process this last week.

Everyone tells me how strong I am, how much I face yet they don’t seem to understand when I say I have no choice. You see loving someone doesn’t come with guarantees. No one promises you a life full of unicorns and balloons. You take a step in faith, in love.

When we adopted Daniel I knew I was opening myself up to fear. Embracing the unknown yet with the knowledge that he was extremely complex, that he was vulnerable.

Some people ask me why, yet why not? Just because I didn’t birth Daniel doesn’t make our bond any less strong. I do wonder if someone asks my friends who did birth they children “why they do it”. With Livvy everyone used to ask “how do you?” Not “why do you?”

He is my child, my son.

Love is a choice, loving my son is the best choice I’ve ever made.

So yes my heart is healing and fear is holding time but love, love is the greatest bond, the greatest emotion and the very best reason to be living.

Living to love.

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.

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.

It’s your fault

Having a child with disabilities means I often find myself meeting with professionals who are supposed to be in place to support and guide me and make sure my child’s reaches his full potential. I use the world supposed because sometimes and some would say often this doesn’t happen.

I have met some amazing people who are incredible at their jobs and I have met some doozies who seriously need to either consider a career change or at least attend a training course on compassion, respect and understanding.

Yet thankfully I have never come across one like the one my friend has met this week. My dear friend is at breaking point she adores and loves her child with every breathe she takes but after literally sleeping for less than three hours on a good night for the last how many years she is broken. After asking again for the numerous time for a little support and respite she actually told a professional that she is close to breaking, she is physically and emotionally on her knees. To which the so called professional replied “well how is that going to benefit your child, you have a responsibility to keep yourself well for your child”. What the **** seriously I’m not sure how my friend stayed calm in this situation without demanding a manager or someone at a higher level but she did (I actually think she is just too tired to fight anymore). Yet how, just how can a someone say this, it’s not as if my friend wouldn’t love a good eight hours sleep each night, the chance to spoil herself and have a haircut, a night out on the town with the girls. She would desperately love this but as a sole carer, her child has and and always will be her priority. How is her exhaustion her fault?

I’m sorry but do people really believe this ? That parents of children with disabilities just cannot be bothered to take care for themselves.

Let me give you a little breakdown of my day,

It’s starts pretty much where yesterday finishes, I have medication to give at 12am, 6am, 8am, 12pm and 6pm. I also have an overnight feed to prepare from 12am till 7am, also another 8 Bolus feeds to give throughout the day.

I have a minimum of 10 nappy changes each day with all nappies weighed and recorded.

My child sleeps maybe 3 hours max at a time needing comfort, moving and generally loving throughout each night and that’s on a normal night. This can double or treble if unwell in any way.

To leave the house, besides feeding, changing and lifting my child into his wheelchair I also have to pack feeds, meds, and emergency protocols and emergency meds. I cannot ever just wing it and just grab my handbag and leave. His life depends on me carrying the medication he may need.

Let’s also realise that normal chores are often doubled or tripled, washing for example does not consist of the normal one outfit a day but the numerous we need from unexpected changes, sheets bedding etc etc.

Add to this caring for my child’s needs, dressing him, bathing him, moving him, lifting him and of course playing, amusing him and loving him.

Oh I almost forget I’m also my child’s personal assistant arranging, rearranging and chasing his numerous medical appointments, the EHCP paperwork, ordering his medications, his equipment and so on. I’m also his advocate fighting for the things that he needs to live with a quality of life he deserves, his voice and his fiercest defender.

So please tell me where or when I am supposed to take care of myself? And guess what I have a supportive husband, great older children and actually a care package that is working for me. For a professional to suggest my sole carer, 4 hours each month respite friend literally is bringing her ill health on herself makes me see red.

Times are hard, right now we have a government that believes everyone can make do a little more, well everybody besides the top 1% of course. My friend already has to make choices between sleeping and eating but hey I guess she can make do a little more. I mean who needs food? She loves and adores her child and so wants the best for him but all she was asking for was a little compassion and support, is that too much to ask?

If she does break and her child goes into a residential facility where he will need 2 carers to support him at all times he certainly will be costing this government so much more.

I actually didn’t know what to say to my friend when she told me what had been said, part of me wanted to go in kicking and screaming and demanding an apology for her. Yet I’m realising the problem is a lot wider.

When you have train companies believe it’s ok not to make trains accessible for disabled people, when you have superstores using disabled children for advertising whilst depriving them of the basic facilities to have their care needs met, I realise this world needs to change.

When you live in county where almost three quarters (72%) of carers have said they had suffered mental ill health as a result of caring, while well over half (61%) said their physical health had worsened.

You know things have to change.

I welcome the news released yesterday that a joint report by two Committees of cross party MPs, the Housing, Communities and Local Government and the Health and Social Care Committee, calls for new contributions from individuals and employers into a dedicated fund to be ringfenced to help pay for the growing demand for social care in the future. Highlighting the immense strain that the current system is under, including families providing unpaid care, the MPs have proposed a series of measures including a new “Social Care Premium”.

But there is a long way to go..

Figures released by Carers UK show that

1 in 8 adults (around 6.5 million people) are carers

By 2037, it’s anticipated that the number of carers will increase to 9 million.

Carers save the economy £132 billion per year, an average of £19,336 per carer

Over 3 million people juggle care with work, however the significant demands of caring mean that 1 in 5 carers are forced to give up work altogether.

Carer’s Allowance is the main carer’s benefit and is £64.60 for a minimum of 35 hours, equivalent to £1.85 per hour – the lowest benefit of its kind.

People providing high levels of care are twice as likely to be permanently sick or disabled

72% of carers responding to Carers UK’s State of Caring Survey said they had suffered mental ill health as a result of caring.

61% said they had suffered physical ill health as a result of caring.

Over 1.3 million people provide over 50 hours of care per week.

Again I will stress there is a long way to go.

Yet how hard or how little would be needed for those professionals in the lives of carers to actually think before they speak. To actually show compassion without passing judgement.

My dear friend hasn’t the energy to ask for an apology and right now is literally holding it together in her words “with Gods grace and the love of my boy”. But how many more are out there struggling feeling alone and broken?

I know how hard it gets and as I have said I am one of the lucky ones.

All I hope is that change will come but until then if you are struggling, if you are feeling alone please get it touch because none of us can do this alone but together we can and will make it.