Tag: friends

My beautiful boy.

On By rebelwithkindnessIn Dear Daniel, grief, Uncategorized2 Comments

I have been asked by a number of people if I would share what I said at Daniel’s celebration of life and to be honest I wasn’t sure as it was me being honest and very vulnerable. Then I was reminded that’s what I do I share my heart to allow others to share theirs. So here is my speech please if you don’t like it keep that to yourself because this was literally just for my beautiful boy.

My beautiful boy, my son.

“It is said that grief is the love that you cannot give so right now this pain feels validated, feels true. You see Daniel I love you with every breathe I take. From the moment I met you I fell in love, breaking all the rules but not caring at all. The day you officially came our son it was day that the the legality caught up with what my heart already knew, you were my boy, you were my son.

Thank you Daniel for reminding me of the joy in the world, for allowing me to love you with no restrictions. It has been a gift to be so needed, to be your safe space, to be your person. I’m not sure how to go on with this endless void in my heart but I will try for you. You fought to live with a strength that is beyond comparison, if love could have saved you well we wouldn’t be here today.

How I wish I could hold your hand in mine again, how I could run my hands through your thick crazy hair. How I could feel your head on my chest and your gentle breathing in the place your called home, my arms they ache to hold you. My lap feels empty and lost.

Daniel your Daddy misses you so much, his Grand Prix buddy or sofa naps excuse. How he wishes he could moan again about the number of clothes, shoes, coats you needed, well I believed you needed. How even his fear of animals was lost in your excitement.

Daniel Robert you were a gift, a mind so full of questions always wanting to learn more. Your love of animals was unbeatable, your desire to put your hand up a cows bum unrepeatable.

Your love of nature was inspiring, teaching us to slow down and really take in the glory of our world. We listened to the trees as they danced on the wind, marvelled in the bird song, and cherished the fragrance of the flowers.

Daniel you loved God with all your heart, how I will miss hearing you sing along to worship. How I wish you would try and shout over Tim once again in church . Our prayers, oh my our prayers how you prayed for those you loved with a compassion beyond your years. You prayed so hard for your sisters, for their happiness, their hope. I know you are still praying over them and hopefully having words with the big guy up there.

I used to call you my little old man, childrens tv or music you didn’t care for. The documentaries, zoo programs and of course your complete favourite the Yorkshire vet. I’m going to miss your Dad complaining, so sure that we had fixed a prolapse viewing for every mealtime on purpose. We didn’t but maybe now I will.

Oh Daniel my beautiful boy, You touched the lives and hearts of everyone who met you. Your cheeky Elvis smile, your dirty looks all part of your character that we loved. You were joy, hope and faith all rolled into one handsome cute package.

So many people here today will miss you, your nurses and your flirting, the hiding in your hospital room for sneaky cuddles, you loved them all. Your Drs all inspired by your courageous spirit and your ability not to do it the usual way, always the Daniel way. “That’s Daniel”

Daniel you were a gift to us all, you gave us all hope again, you taught us to love hard once more. Right now I’m not sure I will ever fully love again but I know that’s not what you would want from me. Not the legacy you would choose.

I will feel you Daniel in the wind that blows around me, In the flowers that bloom and in the dancing of the trees.

Thank you my son for giving me the gift of loving you. Thank you for loving me with a need unlike I have every known.

Thank you Daniel for being my son, my forever beautiful boy. Now go dance with Livvy and sit in the arms of Jesus until we meet again.

I love you x”

Let’s banish “I’m fine”

On By rebelwithkindnessIn Uncategorized2 Comments

I swear my body and mind are in conspiracy to drive me crazy. My body aches and I’m so tired I can barely keep my eyes open. I finally fall into bed and ping, my mind starts its endless racing. Have we done this? Did you remember to do that? What about this? What about that? What happened, what if this happened oh my goodness please stop.

I read a post the other day, a friend not a close friend we haven’t met but someone who matters to my heart reached the darkeness and her world was so dark we nearly lost her to it and my heart broke. Yes the joy of the nearly was full of gratefulness but the sadness that the facade of social media had not let us see their pain.

But it’s hard isn’t it, to raise your hand and say I’m struggling.

I call it my advance and retreat. I try to be honest, to be brave, to be raw then in the morning light my weakeness fuels my shame.

I should be coping

I’m so blesssed

Others have it worse

Be grateful

Others have enough on their plates

Don’t put on others

Stop being dramatic,

This last statement is my core enemy.

My childhood was full of being told I’m to dramatic, to emotional, too much.

Even now the narrative is different yet still hauntingly the same, you care to much, what if doesn’t happen, let it go.

Still shame based observations of my heart.

You see we are all unique and whilst the stiff upper lip is so celebrated it is also the weight that holds so many people down.

We should be taught from an early age to be open and honest. Tender hearts should be celebrated, anxiety understood, overthinkers heard.

Our children should learn from day one that the way they feel is perfectly ok. If it doesn’t make sense to others that’s also fine, that the world would be a boring place if we all thought and felt the same.

But we aren’t are we, our children are taught by rote, uniformed to be, to do, to fit.

To be seen and not heard once held by parental control now often controlled by technology.

Yet we should know better, with the ever increasing levels of mental health issues we should be better.

“I’m fine”’should be banished from everyone’s vocabulary. “Are you ok” should be asked with truthful concern. We should listen deeply and we should take time to care.

Yes the world is a busy place, yet the viewing numbers of the last reality programme proves we have time. Yet it’s easier for us to invest in the loves and lives of those we don’t know because no effort is needed. So yes we have the time or can make time to check in on those that we know and should care better for.

So why don’t we ?

I know I need to do better, I need to reach out more, when a friend goes quiet just check in. But I also need to be honest to create a place when it’s safe to speak our truth.

To not hide behind the illusion that’s I’m ok when I’m not. Someone once told me that they couldn’t speak to me about a problem, they felt that my life as hard at it seems meant that they didn’t wish to put upon me. But also they felt ashamed because I was doing well in my journey how could they complain? This broke my heart, I am far from ok, sometimes I lie in bed and beg my mind to leave me alone. To just for a moment stop thinking, stop torturing me with agony of what ifs or what should be. I’m not ok and maybe if I’m more honest in my struggles and vulnerabilities it will allow the others the space to be transparent with theirs.

Hey, we can not be ok together.

I do not believe we were supposed to live this life alone, but alone it will be if we don’t let those we love know our hearts.

So here’s to being truthful, to banish “I’m fine” and to reach out.

Let’s be better

Let’s do better

Let’s love better.

A trashy soap opera.

On By rebelwithkindnessIn UncategorizedLeave a comment

I was once told that my life was like a trashy soap opera that I was full of drama. I remember the conversation vividly, at the time my daughter’s diagnosis was official and I held the letter in my hand and on that same day I had also received a call to tell me my Nan had died. 

The literal definition of a day from hell. 

It was a defining moment for me as I realised at the that point that my pain was my own. That others could not or would not understand it.  I felt ashamed for being a burden for bringing others down and for basically existing. It was the reinforcement of what I had always believed of myself, I was broken, I was drama, I was too much. 

You see this was the narrative I had been taught, my emotions were my enemy, my empathy my foe and my heart well it was too emotional and too much. 

How I wish I knew then what I know now. How I wish I could have just put the phone down on that call or even challenged the uncaring, unthinking compassionless attitude of the caller. How could a so-called friend see a life -threatening diagnosis and the death of a grandparent as a soap opera? 

I mean how? 

I have worked hard over the last few years, I’ve had to challenge the nurtured narrative of my life that “I am too much” into a more truthful one of “I am”. 

I am a human being that deserves to exist, I am a woman who has faced heartbreak and loved hard enough to feel the pain. I am strong, I am powerful and I am a survivor. 

My life has faced tragedy, pain and loss but I am lucky that I got to experience a life of emotion. To grieve means I have loved, to have lost meant I have cared. 

Yet people are still so quick to judge others, only yesterday a conversation with a friend broke my heart. She is facing a tough time right now but feels she cannot be honest about how hard it is for fear of people thinking she cannot cope. As if feeling fear, exhaustion was a crime. I find it ironic that when someone has a physically demanding job their exhaustion is allowed, it’s ok, it’s understandable and often respected. Yet when people are emotionally weary they are judged “you need to pull it together, stop thinking about it, you need to be stronger”.  A world where those emotionally struggling are seen as weak.

We need to show compassion not judgement.

You see instead of calling my life a trashy soap opera my friend should have been a place where I could admit how my heart ached for my Nan and how the fear of the future for Livvy my daughter was often overwhelming and she should have told me how proud she was that I still showed up. That in the midst of this emotional tornado I was still fighting to give my girls the best life I could.

She should have loved me through it. 

Loved me in it and through it. 

You see, the British stiff upper lip crap needs to end. People need to feel free to say that today is hard. People need to support others where they are rather than where they feel they should be. A end needs a beginning and a middle before it is reached. 

Emotions are messy, they are often uncomfortable and can be hard work, but they are what makes us human. We should never have to hide our hearts. What I know now is that I need to surround myself with people who love me for my heart.

So if like me you often find yourself apologing for your heart stop, find your people, find those that love you as you are, find your tribe. It’s not about  changing to fit in, you cannot live a lie. You don’t need to be anyone but you. 

Be you, be proud, cry, scream and love hard, because you are beautifully and wonderfully made. 

It’s not ok that our children died.

On By rebelwithkindnessIn UncategorizedLeave a comment

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

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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

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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.

My rainbow tribe

On By rebelwithkindnessIn Uncategorised1 Comment

Last Friday night was one incredible evening along with a wonderful group of people I hosted a Rainbow disco, a fundraising event in aid of raising funds for our local Children’s Development Centre sensory room.

Over the years I have hosted a number of fundraising events, but Friday was so different as I didn’t do it alone.

I first attended the Children’s Development Centre 16 years ago when we started on our journey into investigating what was happening with Livvy. I was welcomed by staff who wanted to support and help me as much as they could. I can honestly say that some of the faces may have changed but the philosophy hasn’t everyone really wants to support you and your child.

I started at Little rainbows  a specialist playgroup for children with complex needs in April 2016, Daniel had been with us for a few months and it was time for us to encourage him to socialize and challenge him to learn and engage with others outside the family. Whilst he struggled with attachment and often switched off, from day one we were all made welcome by the group. The staff are genuinely lovely and the parents, well they are some of the best people I have had the pleasure to meet.

I have written here often on my blog how I struggle with friendship yet here at Little rainbows I have been blessed by some amazing friends. Women and men who have opened their heart and arms to both Daniel, I and even Alan (lol). We have become part of a tribe, the rainbow one.

Daniel will be leaving this group very soon as he starts his school journey and whilst I will miss the lovely staff at rainbows I know I won’t have to miss my friends, little rainbows is what introduced us,but friendship is what holds us.

We are the rainbow tribe.

I want to hug you in real life.

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Do you know one of the main things that frustrates me about the internet and social media in general? That some of the people I really would love to do life with often live miles away. People who I have connected with strongly are so far out of reach. How I wish I could turn my virtual hugs into real ones.

I have met some really incredible people via the internet. I get to follow some really inspiration women who have truly blessed my life. Some without knowing have got me through some extremely dark times.

I have had conversations with people that may not have happened in real life. Some finding vulnerability safer on line than in real life. Sharing their hearts filling mine with strength and courage.

I have been challenged by perceptions I would not have seen without the internet. Opinions and reasoning set out allowing me to educate myself without prejudice. Knowledge being as always the greatest power.

I have been inspired by those doing life in the only way they know how. Sharing the good, the bad and the ugly giving me freedom to admit to the reality of my life. The pain, the struggle.  Whilst not always easy  but celebrating the joy and the magic of the moments.

Yes the internet does have a dingy side, a side where bullying and trolling has its slimy place but these cowards can stay hiding behind their keyboards because they don’t scare me. Validation isn’t found in their mean nasty words.

Validation is found in your army, your keyboard warriors who stand beside you each day. Who reach out across the fibre optics across the broadband and reminds you that you have got this.

We have this.

But I do get frustrated at times, how I wish I could arrange one mighty dinner party and invite you all. Get to hear the laughter rather that read the ha ha’s or the lols. To give the hugs instead of virtually receiving them. To just be surrounded by all you weird and wonderful people.

But until then I’m celebrating the gift of the virtual world, the expanse of the internet and all you incredible people that I get to call friends.

My friends.

Inspire or destroy?

On By rebelwithkindnessIn Uncategorised, Uncategorized1 Comment

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. 

Freedom at forty 

On By rebelwithkindnessIn Uncategorised, Uncategorized1 Comment

Wow it’s official today I am forty years old. I know I should be freaking out moaning about the wrinkles but to be perfectly honest I love it. I am celebrating not just the coming of a milestone age but also the freedom in who I am.

  

Finally at forty I am comfortable in my own skin. I know the direction of my life and I’m content and fulfilled. 

I am celebrating more than 40 years on this earth. I am recognising my struggles, my heartbreaks, my relationships and the way they have all shaped me into the person I am today. 

  

I am looking back and seeing the many blessings I have had in my life. Celebrating my beautiful girls, my handsome boys, my wonderful husband.

I am grateful for the friendships that I’ve had, those that have stood the test of time and those that were brief but valuable. 

I can look back and see the life’s lessons I have had to learn. Some I got quickly some which took a little longer, all had value, all had purpose. 

I’m excited about the coming years, excited to embrace all the future has for me. 

I’m moving into my 40’s determined and head first. 

I’ve learned a lot over the last 4 decades and I’m hoping I will take this knowledge forward into new experiences and new memory making moments. I’m hoping that older may mean wiser but hey you know me. Heart first and the head a little later. 

So today Happy birthday to me, thank you to all the family and friends who have walked alongside me. Thank you for the memories and the moments and here’s to many many more. Bring on the next 40.