It’s not ok that our children died.

Often when we face a loss in our community of special needs parenting, our hearts break alongside those facing the pain. We emphasise with the anger and missing we feel the disbelief and sadness. Myself personally I ache for the pain I know those left behind will feel. Each new loss reopening a wound that is far from healed.

Yet one of the things I still do not understand about loss in the disability community is that from those outside of it, is the feeling that somehow it’s acceptable. That in some way it is less. The concept that a life lived with a disability is not as full as one without.

There is no denying that being part of the special needs community we face loss maybe more than most, the wider our community the wider amount of pain. But that’s our life, we choose to walk alongside one another through the good and the bad. We celebrate the achievements and too often we have to grieve the loss.

Yet often those outside the community do not understand our journey and more often than I would like, do not understand our joy.

Statements like “oh well she had been poorly for a while” “sometimes it’s for the best” or my favourite (irony) “God knows best”.

When Livvy died she had a devastating neurological condition. Her body faced so many obstacles, seizures, abnormal breathing, sometimes uncontrollable movements. Yes, to list her conditions it may seem dire. Yet what the reality was that yes she had this list of issues but what she also had was a life filled with love and laughter. She had a family that adored her, she had parents she wrapped around her fingers. Sisters she teased and played with. Teachers she adored, friends she loved. Her life was full of joy and mischief. She was not her list of conditions. Yet still when I speak of my missing, people speak of her with pity. When I speak of her loss, people speak with acceptance, as if her disability makes her death more ok.

Whilst I know this attitude is meant with kindness I need to share that it’s not. When someone who has a disability dies it’s not ok, it’s not even a little ok. It’s a heartbreaking, soul destroying grief.

You see people are not their disabilities they are simply people. A child with disabilities is simply a child.

So I beg of people, I ask desperately that when dealing with a grieving mother, a broken father a missing family, that before you speak of freedom from pain, limited lives or God’s choices, STOP. Whilst the lives lost may have seemed hard to you, or the disabilities overwhelming those grieving see the little boy whose eyes twinkled as he looked at them. The little girl whose smile lit up the room, their son, daughter, sister, brother. We don’t grieve the disability, we grieve the one we loved and their disability wasn’t what defined them. Our pain is not less and their death is not and never will be acceptable.

Mother’s Day love

Mother’s Day, a day where we come together to celebrate all things that are Mom in whatever form that comes, stepmoms, adopted moms, grandparents being mom and so many more.

Being a mom is one of the hardest jobs in the world. The exhaustion of pregnancy, the labour of delivery, feeding, sleepless nights and so much more but yet it’s often the most rewarding role we will ever get to hold.

It’s tough and this last year has been a real struggle , ‘wow’ is pretty much all I can say about the last 12 months. From home schooling to the deep pit of fear that has been in your stomach since the words Covid 19 were first spoken, it’s been a year.

Still if I wish to challenge all moms a little now in fact probably all parents regardless of gender. What do you think is the one thing that is the hardest to cope with when being a parent?

Exhaustion, worry, finances,

Shall I share what I have placed on my heart this week. What God has wanted me to share with you all.

The hardest thing about being a parent

Expectations

These pesky little things that penetrate our minds and hearts.

I should be

I could be

If only

All turn into

I failed

I’m useless

I’m letting them down.

Now I’m coming to you as a mom of a five so a little experience here and also as professional of therapeutic childcare and I just want to state something here and I really want you to hear me.

You are enough

You are enough.

Our children enter this world with only a few needs, to be fed, to be warm and to be loved. Speaking confidently right now I am sure that each of your children are having those needs met. They are either grown and off living lives that you have encouraged and nurtured. They also could be there in your arms snuggling tight or even kicking out in your precious womb. They could be causing complete mayhem running around the house but all done in the knowledge that ‘they are loved’.

You are enough.

Yet we only have to look back the last 12 months and the changes this virus has brought into our lives. Homeschooling, isolation, exhaustion, fear. How many of use have felt lost, that they are failing?

My hands are right up in the air, me me.

I have watched social media posts of moms with beautiful converted classrooms with their children willingly working away. Houses spotless, make up perfect and I’ve literally cried. I have cried as Daniels homeschooling paperwork fell off the printer for the 15th time, cried as he completely ignored me as I tried to encourage him to work, sobbed at the state of my house and as for being perfectly made up, well I’ve had a shower and I’m saying Amen to that.

You see I couldn’t reach the expectations I had put upon myself and that’s ok. Because Covid 19 or not, being a mom is hard.

We mess up, we lose our temper and we suck at patience some days. Because motherhood didn’t come with super hero powers just the responsibility.

Anyway where am I going with this, well I’m leading to something I have personally took a long time to learn.

You don’t have to do this life alone.

As friends and family we are there to walk alongside one another. Reach out to friends, not only those at your stage at life. We have a wide breathe of generational wisdom to tap into.

But most importantly

Reach up, reach out to Jesus and ask him to walk alongside you. Ask for wisdom, hope and a big one for me, for patience.

Ask him to free you from the lies of the enemy that you are not enough. Free you from the untruth binding of expectations. To be beside you as you raise the next generation and to guide you as you walk this pathway of parenthood.

I ask you to look now at your child or if they are not with you bring them into your mind. As your heart swells of the love you feel for them as the love you have warms you to your very core, I want you remember.

I want you to remember

“We love because he first loved us.”
1 John 4:19

He loved us first,

He loved us first.

Remember that Jesus loves us as we love our children, that warmth you feel for your children he feels for you. He loves you to your very core.

and I want you to say this loud

“we are enough. “

I am enough.

Holy cow it’s March

Well hello March, what happened to January and February? Oh that’s right Sara you got lost. Lost in sadness, lost in anxiety and lost in defeat.

2021 started wrong, I’m sorry but I survived 2020 by patiently waiting for it to end. Pretending that it’s ok, hiding in a false facade of a comradery of equal suffering. “We are all in this together” “if everyone looks out for another” “we can do this”.

What bull that was, whilst some were hosting garden parties or indoor raves I was still locked behind my door scared to breathe deep.

So 2021 you need to behave, I have no more inspiration for homeschooling. I don’t want to talk to my husband any more and as much as I love Daniel I need sleep and I really really want to hug my daughters.

I cannot pretend anymore and that’s ok but unfortunately in my brain it wasn’t. So January and February I did my familiar act I locked down. I couldn’t disguise my sadness any more so I hid. I found my anger at the injustice of the forgotten vulnerable had started to warp my life view, jealous of others park walks none the less. Shopping trips envied to the point of stupidness I mean who cares that Asda has a new bedding range.

I did it 2020 I survived you but 2021 you need to play fair.

I’m broken…

I’m not asking for a lot, I have no desire or money to travel (lockdown for foster carers didn’t fit the furlong scheme). Just to walk along a beach to feel the freezing cold of the British sea on my feet. To take Daniel to the local farm where he can indulge in his cow stalking behaviour to his hearts content. To eat in a restaurant where someone serves me and washes up.

I want to hold my daughters tight, to be there physically if they need me. To watch Daniel be held by those that love him as we repair his attachment bonds and remove his fear of rejection. To start his therapies again and to do all I can so he gets to live the fullest of lives.

I want so much to be there for my friends, to drink coffee, babysit whatever they need. To be able to hug them when they cry, to be able to listen without being out of reach behind a screen.

I want to people watch with joy again. To be able to see those around me without fear of infection.

I want to not feel so angry, so lost.

2020 I survived you, 2021 behave.

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. 

They say never meet your heroes.

It is said that you should never meet your heroes, but Daniel and I have to completely disagree.

Over this lockdown period we have struggled to engage Daniel and keep him occupied. He has never really been interested in television and especially not bothered with programmes aimed at his age group. So imagine our surprise when a chance watching of The Yorkshire Vet led to a new love for him. Daniel loves to listen to the animals and although I have yet to hear a consistent spoken “mom” my cheeky boy now is mooing along with the cows.

Daniel’s joy when the credits start rolling and when he recognises the music is so evident in his face, he sits and listens to the adventures that the vets go on and actually gets cross if anyone talks over the programme. He just loves it, I wonder if its the sounds of the animals or the fact that the programme is narrated and that the vets talk us through when they are doing. To be honest I believe its just a perfect combination for him.

So the Yorkshire Vet has been a blessing to us over this isolation period, we have watched, learned about animals and generally loved watching Daniel get so excited over something. It was this joy that made us decide that after lockdown we would take Daniel on an holiday to visit the places that are in the show, to walk the streets of his favourite vets, a Yorkshire Vet adventure.

Still even in my wildest dreams I could not have imagined how much of an adventure Daniel was to have.

Thanks to the wonderful world of social media the wife of Daniel’s favourite Yorkshire Vet Peter (sorry Julian) reached out, she had seen one of my videos of Daniel chatting to (his) Peter and wondered if we would like to meet him when we came to Yorkshire, would we ever, how exciting.

So last week we headed to Yorkshire in what to be honest we would believed would be a quick meet and greet with Daniels favourite.

Oh my goodness I’m not sure I can find the words to do our visit justice. Peter and Lin came and visited with us at the cottage we were staying in. They were lovely, from the programme Peter comes across as a caring kind gentleman and thats exactly who you meet. No airs or graces just compassion, genuie interest and just so lovely. Peter and Lin won our hearts in seconds, so often people do not know how to treat Daniel, we often face people who just dont acknowledge him or speak to him as if he is stupid. None of this happened, Daniel was reserved at first but after listening to Peter’s voice for five minutes he was completely engaged. Peter and Daniel were just chatting on the floor about Daniel’s desire to put his hand up a cows bum and Peter’s love of testicles (if you watch the programme you will understand this). Daniel adored both Peter and was a little smitten with his beautiful wife Lin. Their visit went beyond anything Alan and I could have imagined. It was so special that when they left we both actually cried with joy, the memories made for Daniel were priceless, yet they wasn’t to end there.

The very next day we met both Peter and Lin at the James Herriot museum, the place where Peter’s career as a vet began and the home and work place of the man whose books Daniel loves James Alfred Wight better known as James Herriot. Daniel was excited to visit the centre, to be honest not because of the history but because I had told them of the interactive cow that he could put his arm up and help birth a cow, the dreams of my child. We wandered around the museum listening to the stories of Lin and Peter of their times there, although the house has been restored to the days of Herriot it was lovely to hear the stories of Peter and Lin and the memories they had of the place. Daniel was super excited (in his own way) to reach the interactive cow and with a little help his arm was up that bum. Unfortuanly we soon realised that vets need longer arms and poor Daniel wasn’t able to reach the calf, but isnt that a perfect reason to visit again. We milked a cow, answered questions with Lin on the characters of the Yorkshire vet and literally just soaked in so many memories. Daniel had some photos with Peter and even sat on his lap, I say ‘even’ as over lockdown Daniels separation anxiety has become awful and he will barely leave my arms but it seems sitting with Peter was ok.

Just writing these memories down fills me with so much joy that the tears are flowing into my keyboard. I have no words to explain how much this meant to us all, Daniel was so happy to hear his Peter and for Alan and I we have magical memories to cherish.

Peter and Lin Wright are such a beautiful couple and we are left just feeling so honoured and blessed to have met them. As we sat there this Tuesday watching the Yorkshire Vet it just feels so special and different to have walked in the places we see, to have met the people we watch. Peter and Lin if you read this I cannot thank you enough for making my boys dream a reality and as for those who say never meet your heroes we completely disagree our hero was incredible.

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.

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.

To scared to voice my dream

Have you ever wanted something so desperately that you actually cannot voice your desire?

That the fear of hearing the words outloud is so scary that your stomach does flip flops.

That when people tell you to release your hopes into the universe it feels like a gigantic scam to make your world tumble down.

This is exactly how I have felt about the adoption of my new son. That if I actually shared the ins and outs of the situation it would actually explode in my face, my heart.

It hasn’t been helped by social workers who should have the words “hopefully” and the statement “it should” ripped out of their practice handbook. The hedging of their bets or professional distance is nothing but frightening for an adoptive parent. 

We need to hear “of course” or “it will“.

I honestly feel as if I have been walking on eggshells this last year. From the moment we decided we wanted to adopt our then foster son my heart feels as if it has been ripped out of my chest, trampled on then replaced. It’s been hard and the reason I haven’t really shared this journey here is simply because I couldn’t voice my fear. 

I couldn’t allow the inner demon inside my head any space here on this platform. It was doing enough damage inside my head.

“You aren’t good enough”

“Adoptive parent, you, ha really”

“It’s going to fail”.

The adoption process isn’t easy, I guess it shouldn’t be. The assessors actually have the lives of children in their hands. They have to probe, explore, question. 

“How did you feel when this happened?”

“How would you cope with this?”

And the big one

“Why adoption”?

Your answers of course have to be the truth but I have woke night after night with fear that my truth wasn’t enough.

Thankfully, my truth was enough and last week we found out that the judge has signed our adoption order and in a few weeks our boy will be our son.

I cannot tell you how excited I am, how much it matters to call him mine. I am simply on cloud nine. My heart feels full and I’m sure I haven’t stopped smiling since I heard the decision. 

I may not be able to write down our complete adoption story yet. It’s still a little too raw and it’s not actually at the end point yet. I still now wait impatiently for the date of our celebration hearing and my heart will still probably jump at the delivery of the morning post for a while yet.

But I will state this here, our adoption journey has been hard, we have cried many tears, had many sleepless nights and had way too many stress headaches. 

Yet I promise you this, every stinking moment of this chaos and fear has been worth it, my son, he is so completely worth it. 

Inspire or destroy?

Last week I was lucky enough to get to listen to the inspirational Nick Barwick. Nick is a motivational speaker who came to a fostering meeting to share his experiences as a care leaver. His story is incredible, he has faced adversity, pain and suffering throughout his life but still found the strength and courage to achieve his dreams, he defied the odds and he overcame.

Nick is passionate about sharing his story, he wants the success stories of life to be shared. We need our children to have hope, that if they are struggling and finding life a struggle they can remember that where they are right now is not where they need to end. This is doubly important for all children within the looked after system, they especially need the reminder that there is Hope in this world.

I took an awful lot away with me after listening to Nick speak, but what has been twirling around in my head since I left the meeting was the impact of ‘words.’

Let me explain a little, as Nick was sharing his story he spoke about being told by some professional in his life that he would not achieve, academically, financially and emotionally, and how these words for a long time became a self fulfilling prophecy for him.

How the words spoken to him became the words he spoke to himself.

Words have power!

They can inspire but also they can destroy.

words

Hearing Nick’s story just hit home how important our words are,

How as Mother’s, as fathers, as teachers, carers, our words have an impact on hearts.

How as a friend, a wife, a sister I need to use my words wisely.

How often have we let words spoken to us bury deep in our hearts?

How what may have been a passing comment has be able to consume our minds.

Someone else’s opinion become our truth.

I know I can look back in my life and raise my hand numerous times for when words spoken in hate became my reality.

“You won’t pass it.”

“I wouldn’t even bother’

“You are not good enough”

“Who would love you?”

How I let these lines of letters sink deep into my heart like an anchor dropped into the ocean, dropping slowing until they find a place to settle and hold, hold on tight.

How I  have allowed hurtful words to crawl under my skin until I believed them completely, burying under my skin into my blood to pump through my veins, straight to my heart.

Burrowing deep until I owed them as my truth.

Thankfully like Nick I had someone in my life who challenged me to question these words. To remind me that my future was mine to create.

That it was up to me to write my own story. 

story-of-your-life

I’m still a work in progress, my story has many chapters left to write.

I’m still learning to throw away the words that hurt, to erase the words that are wrong and untrue.

To protect myself from words that do not inspire or encourage.

I’m creating my own vocabulary and as I do this I hope to create another for my children.

I want their story to be one of adventure, excitement and hope but what I want most of all is that the biggest chapter that they write will always be one filled with love.

I pray that story is one of knowing, knowing how loved they are.