Let all children dream.

If you follow my instagram account you may have watched my stories last night where I try and explain my sadness at a comment that was made a few weeks ago on one of my photos. I tried to explain why this comment had upset me  ( not sure thats the right sentiment) but feel like I want to explore my feelings a little further, so here we go. 

I had as I said posted a photo of Daniel dressed up in a vet costume a friend had brought for him, the photo as you can see here is of a little boy just loving role play and having fun. The comment posted asked me ‘paraphrased’ “Am I setting Daniel up and giving him unrealistic aspirations as he is never going to be a vet”? 

Well, how, where do I start to reply to this? I think the answer to this question has many layers, my first could simply be “Oh please do one, its mine and my sons life”. But lets be honest thats not me, it also shuts down any conversation that I feel needs to happen regarding this question. 

Secondly my response could be and the one I did actually answer with “ would you make this comment if Daniel was neurotypical, would you feel drawn to tell any other 6 year old that they cannot be what they wish when they are older? “ Maybe I am wrong and the person is a joy robber ( side note here, this is my pet name for my husband, marriage counselling maybe?)  Maybe the question asker would ask this of all children, but if I am honest I don’t think so. I believe the question was asked due to Daniel’s disabilities and what people see as his limitations. 

I will never limit Daniel by a list of his disabilities, our family motto is ‘never say never’ and so far Daniel has exceeded expectations across the board. If one day he does get his bum through veterinary school, then and only then will I let him treat my pets ha ha but until then I will encourage and support in all he wishes to do. I refuse to limit my child and I believe that every child has the right to dream. If they didn’t we wouldn’t see scientists make discoveries, artists paint masterpieces and paralympians win Gold.

These were all children who were allowed to dream.  

When I read the comment on my post, I viewed as you do the grid of the account holder and there on one of the photo’s a child was in a spider-man costume, maybe I am being a little bit of a cow but am I the only one seeing the hypocrisy in that?  I mean who am I to limit a child’s dream, but will that child really be Spider-man one day? 

So for those of you who were worried that this comment had offended me please don’t be, it didn’t one of the few things you will never knock me down for is my belief in my children. Each and every one of them I have told to aim high and to not settle. I don’t mean achieve the best pay checks ( not a bad thing though)  or have a house full of fancy things but to find their passion and to live it. I will always be the biggest advocate and the loudest cheerleader for my children, too loud my girls might say. 

The reason I shared the comment as I usually try not to feed the trolls was because I wanted to open a conversation on the perspectives of people and what they see when they see children with disabilities. I want people to think before they ask a question. Would this question be one I would voice if it was regarding a neurotypical child? Is it really a question with relevance ( I mean I wasn’t challenging her child’s desire to be spider-man)? 

Yet most of all why oh why do you feel the need to stop a child dreaming, imagination is a gift that should be nurtured and encouraged. We should encourage the dreams our children dare to dream. Celebrate when they push the boundaries from what has been, into the domain of what could be. I don’t want to live in a world where all children aspire to be the same, I want individuals, adventurers, artists, musicians. I know I want my girls and Daniel to go for they hearts desire, they may not get it but at least they have tried. 

The crazy thing about all this is that Daniel has no desire (right now) to really be a vet, he is isn’t searching university courses, or reading his biology books. He is just a gorgeous young man who finds it hilarious when Vets takes testicles off and has a strange desire to put his hands up a cows bum. 

So to all the 6 year old astronauts, pirates, super heroes and dragon tamers keep dreaming, let your imagination run free. Create new worlds of adventure and excitement. You are the future generation and I am excited to see the amazing lives you will lead. As for Daniel right now he is dreaming that his arm will grow a little longer as he just couldn’t reach that pesky calf, next time, next time. 

Seasons change.

“there is a time for everything

 and a season for every activity under the heavens”

Ecclesiastes 3:1 New International Version (NIV)

I have walked many seasons in my life, and I know one of the longest and hardest of these has been my season of grief.

From the time my daughter Livvy was diagnosed I have grieved for what should have been, the life she should have lived or it in reality the life I had expected, planned, wanted her to live. 

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Then when we lost her 11 years ago, I grieved for her physically, grieved for her missing, her smile, her touch and the blessing of her spirit.

My grief felt like darkness.  

My whole spirit crushed by the pain of missing. 

I didn’t understand the why and I was often angry screaming at the ‘why her.’

This was my season of darkness and no matter how hard I tried to pretend I wasn’t sure I would live a life with light anymore.

Yet Jesus knew. 

My dear friend sent me a link to Christian singer songwriter called Steven Curtis Chapman.  Steven and his wife lost their daughter the same year I lost Livvy. Through his grief he wrote and produced an album called Beauty will rise. This cd, these songs, the words broke through my darkness.  In the midst of my pain I could not see God in my Bible, the words lost as my tears blinded me from his love. Yet in these songs, in the lyrics, hope started to grow once again, and the promise that I could hear in the melody slowly healed my heart. 

One of the songs is called ‘Spring is coming ‘and this week as we have faced 11 years without our beautiful girl, I have held on tight to this. Not because I am waiting on the Spring though this cold weather is already getting to me, because I know the blessing of the new.  I have felt the new life burst inside of me. I give thanks and praise to the changing seasons and the love, the hope and the promise each one brings. 

So today I am sharing this with you, sharing my heart and my journey, because God has asked me to share my story. He wants all to know that he is the light in the darkness. 

“I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life.”

John 8:12 New International Version (NIV)

Jesus was and is my light. 

So, if any of you are now struggling in the darkness and if you are feeling the crushing weight of fear, doubt or anger, hold on to the fact that this time is a season and that seasons change. Life is a journey often full of pain and loss believe me when I say I know this but whatever you are facing, know that you are not alone, that Jesus walks beside you. 

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If you had asked me 11 years ago if I would know joy again, I would have said no easily, my heart was broken. I still miss Livvy so desperately and often still fall under the weight of grief but now my heart knows the promise, the promise that one day I will be reunited with her. Yet in this life whilst I walk it without her physically right now, I know that Jesus has great plans for me and joy it does come in the morning, not promising what morning but it does come. 

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So, I just want to remind you that whatever you are facing you are not alone. That you can do this and even in the crushing darkness there will be and always will be a light, the light of Jesus. 

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?

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.

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.

She should have been 19.

I’m not sure how to explain today, how to find the words.

It seems wrong to say that my daughter is 19 today, when in reality she will be forever 9.

I want to celebrate what should be her special day.

I want to eat cake and sing happy birthday, but my heart is just so broken.

How can you celebrate when you cannot hug the birthday girl tight?

How can you smile when forever seems so far away?

Gosh I miss my beautiful girl, that feels like such an understatement. Every breathe I take aches for her, my arms crave to hold her again, my heart beats with a missing piece.

I torture myself wondering what she would be like now, I wonder would she still love her football players, her gothic clothes and Tinkerbell. Yet how can I really know, she has been gone nearly ten years, her sisters have changed so much, so would she?

I have no idea; do you know how hard that is to comprehend? No idea at all. I should know my daughter, I should have been given the chance to.

My heart feels on a roller coaster right now, my faith doesn’t feel like the liberation it should be. Yes, I believe I will see my daughter again but forever is still out of my reach.

Is it wrong of me to wish her back here, back into a body that struggled so much, a body that betrayed her in so many ways?

Is it selfish of me to just want one more day?

Nineteen, it would have been the last of her teenage years, yet the truth is she never got to the beginning.

Nine and a half years, a minute moment in time, not enough, never enough.

I know Livvy would be cross at me today, I know she would be giving me her evil eye and her stern look.

“Mom you know better. You know not to waste a moment, celebrate me and do it with joy. Remind my sisters how much I love them, tease my new brother who you should know I got to meet first. He may have got lost on his way, but I got him to you eventually.

Get out there Mom and enjoy the sunshine, sing at the top of your lungs and hug my Dad tight.

No sadness, no sorrow, no more”

I can actually see her in my mind conveying all this, her eyes alight with mischief.

I can actually feel her soft hand, her long fingers entwined in mine.

I can feel her, but my goodness I miss her.

I can try my darling girl,

I promise I will try,

My heart wants to fall into a million pieces,

My soul just cries out in missing.

I don’t know what or how I will be today, maybe there will be moments of joy wrapped in the ribbon of sorrow.

I can try but I’m sorry Livvy I cannot promise, I just miss you too much.

Happy heavenly 19th Olivia,

Happy birthday Livvy xxxxx