You cannot rush grief

Ok ok I’ve made a rookie error. You know this grief business, well you would think I would be be an expert. Losing three children, one would assume I would have this grief journey down. I wouldn’t need the map or sat nav; this journey should be set in my sub conscious, innate directions.

So why oh why am I finding myself trying to rush through to the end. You know the part where you find some acceptance and maybe a little peace. Come on Sara you should know better that this, there are no short cuts and no quick way through. There isn’t even a toll road that costs you a fortune but cuts out half of the journey time. Nope, no chance,not happening.

No matter how much you don’t want it to the pain of grief has to be lived, the reason why is simple , we love.

Right now it’s perfectly ok and right for me to be lost in the pain of losing Daniel. It’s correct for me to find every breathe painful in missing him. My tears should fall and my heart should be broken because I loved my beautiful boy, I love him, desperately.

Changing the sofa around, painting the walls even maybe putting his toy box out of sight may be what I need to do just to calm the waves but a fresh lick of paint won’t erase the memories of Daniel giggling on the sofa, holding him on my lap, snuggling into my chest, nothing will.

There are no short cuts in grief. What is it the Going on bear hunt book says “you can’t over it, your can’t go under it, you have to go through it”.

I know why I’m trying to push through the pain, the truth is I’m scared I won’t survive it. I survived losing Livvy by the love and need of her sisters, I am truly scared I’m not strong enough to survive losing Daniel.

I’m actually really scared of this darkness I feel.

My whole world changed with Daniels death, my identity as his mom, his carer, his nurse, physio et etc all disappearing with his last breath. He was, my purpose, my joy and my reason. My life was planned with him, I still cannot comprehend a life without him. It’s like my mind just won’t go there, a robot stuck moving back and forth “I just can’t compute, I just can’t compute”.

Oh gosh I’ve sat here thinking how better it would be to be a robot with no feelings, no emotions, no grief ; yet I wouldn’t be happy. I’m a person that feels intensely, if you are loved by me, well you get loved my me. I don’t do half measures. I tell myself I will protect my heart again and again but if I had of done that then I wouldn’t have had the gift of Daniel. I got to love and care for my boy for 6 years, I got to wake up knowing cuddles awaited me, that smiles that would fill my heart would bless my day.

I have spoken and walked through child loss with a number of people over the years ( too many ) and the one thing I tell them is it’s ok to feel broken, it’s ok to feel the pain, because you loved. Give yourself time and to be kind to yourself. This wasn’t how life should be.

Missing someone you love will never be easy and it shouldn’t be. This pain, this agony that I feel now it’s worth it, because I got to love Daniel and if I had to live this pain all over again for just one more moment with my boy I would do so.

So right now all I have to do is be, to be whatever I need me to be, to hold on and allow myself to grieve. There is no rushing grief, it sets it’s own timetable just like love does, as it should because grief is the love we cannot give and I love Daniel intensely.

Dear Daniel

I did it again, I pressed my phone to call your Daddy to ask him if he had put you on your milk yet. Why is my body still waking me a month after we have lost you? Why is my normal no longer my own?

Oh Daniel there are not enough words in the languages of the world to explain how much I’m missing you. Even now as I lie here unable to sleep I know I haven’t accepted the fact that you have gone. I’m a mess, a complete utter mess and for once in my life I do not care. My mind isn’t full of wondering, afraid if others are judging me in my sorrow, I don’t give a monkeys it hurts, it’s agony.

The house still echoes of you, our home, your home, your scent still lingers on the air. I’m still using your shampoo as a body wash so I can smell your sweet scent of strawberries all around me. It’s running out, would it be weird to buy it again? Maybe I will search for an actual strawberry scented body wash. Maybe that’s a compromise. How I hate that word right now “compromise” it feels that’s all I am having to do. Grieve whilst trying to move forward. Rest whilst job hunting, always having to give a little when I really haven’t got a lot left anymore.

I don’t have you anymore.

Oh Danny, I know they will call me soon to collect your equipment and whilst I know you are free from the disabilities that made you need them, letting them go is part of an acceptance I have yet to reach. I’m scared of the emptiness their return will leave behind. I know I have to do it at some point, there is so much to sort out. Your wardrobe is full of new summer clothes you have yet to wear. No sorry clothes you will never wear. This sucks!

Your toy box is still in the living room, your book case full to the brim. Talking of books the new book written by Jacqueline Wilson came today, it shocked my heart. I had forgotten that we had put it on pre-order, “ A new adventure of the Faraway tree” do you think Moonface will still be in it ,maybe Silky too. We loved reading the original written by Enid Blyton together, I’m sure we would have loved this one too. Maybe when I get you home I will read to you. Is that a strange thing to do? Maybe I will just curl up under your blanket with Edgar and read it. Yes I’m going to cry, come on everything is making me cry. Do you know how hard losing you has been?

I guess I need to try and sleep, the irony is that now I have no one waking me at every two hours but I’m sleeping less than ever. I am hiding in my bedroom more than I should be, I’m not sleeping I’m just pretending you are downstairs with your Daddy. I know it’s not helping but let’s be honest nothing does.

Hey beautiful boy, I’m trying I promise I am. Giving up would be easy but I know you and Livvy didn’t teach me that way. Your both fought to live; I promise I will try to honour that. You guys need to help though, sprinkle me with some heart healing dust from heaven, how I wish that was a real thing. I remind myself that I “grieve with Hope” well I’m working on the Hope part, but I’ve got the grieving down perfect.

Oh my gorgeous handsome son, missing you is so so hard. Just to hold your hand in mine once more, yet I know once more is never enough, would never be enough.

So it’s been a month my dear boy, one whole month since your took your last breathe this side of heaven as you lay in my arms. As I held your body close to mine your spirit ran to Jesus.

Until my time comes, until I can run to you and Livvy.

I will miss you

Forever heartbroken

Your Mommy

Xxxx

My beautiful boy xx

Start here

I’ve decided to try and follow a January prompts writing plan. This year is for me to be about learning to enjoy writing again without the pressure of a false idea of perfection.

So here we go.

January 1st : Start here

Start here at the beginning, this should be a time of excitement and anticipation yet I always struggle to start anything. The fear of failure looms above me like the dark cloud on a miserable day. Expectation breeds anxiety inside of me, I’m scared to fail before I even try.

I’ve learned a lot about myself this last year especially. How I have build up false accounts in my mind to protect me. I had convinced myself of so many falsehoods, hiding myself from judgement or the pain of broken promises.

I’m examining these lies I’ve told myself and trying to work out what’s truth from the protective façade.

From simple things like I don’t like craft to places I have convinced myself I don’t wish to visit. Unpicking the pain and brokenness and trusting myself to make my own judgements. Not allowing the past to define my future.

This may just sound vague and that’s ok. Todays not the day to open wounds in a public arena but a day that I start to allow myself to heal.

Trusting myself to feel the rejection and stand strong in my own truth.

Believing that I am ready to finally allow myself to be me.

So here on the first day of the new year, I allow myself to begin to heal.

To begin a journey of new understanding.

Let’s

Start here.

Let’s find me.

Rabbit hole

Have you ever found yourself falling down a rabbit hole, I do often. In fact it’s something I recognise about myself that when something interested me or intrigues me I have to learn more. I can lose hours to learning more, researching and trying to understand.

You see I’m not a face value person, just because someone says it is doesn’t make it true. It’s the reason I have struggled at times with religion, society norms and in general life.

I mean even the history we learn has been written by someone with bias. In fact the way we view life is with some form of bias, our upbringing, the beliefs shared, even the political landscape of our country.

It’s something I struggle with a lot hence the falling down rabbit holes often. I mean if something is said, who said it, why did they say it and where’s the evidence?

I love to read and learn and this is something I’ve always enjoyed but sometimes it would be nice to just say it is because it is.

I often wonder is my brain is strange, the way it views everything with a little mistrust. I really don’t understand people when they quote me the Daily Mail or some other media outlet as truth, I mean come on. You do know journalism is bias from the outset. Be it the ownership or political leading or the blatant scandalisation to sell more it should always be questioned.

But beyond bias I’ve realised that the world is so big that I have hardly touched the surface of my understanding and knowledge. This is exciting and sometimes upsetting I mean I like to think of myself as knowledgable but the reality is I don’t have a clue. I am knowledgable in my small piece of life but my goodness they is so much I do not know. What if I believe something, yet more knowledge would show me I was wrong?

Do you ever feel this way? That you have so much to learn? That you actually don’t know enough?

See rabbit hole.

I often struggle with anxiety and sometimes I do wonder if it’s because I cannot stop the thinking. Throw away comments often get stuck in a loop in my mind requiring research, understanding often beyond what I need to know. Reciting of conversations seems to be a hobby of mine.

My husband frustrates me to my core he doesn’t think past the here and now. He can lose himself in TikTok for hours, get obsessed about a new car and do research for this but when I ask him to think beyond his immediate world he isn’t interested. “Why worry about what I cannot control” or the worst one “just stop thinking about it”. I mean come on as if that’s possible. He frustrates me partly because I would like him to think a little more and share the worry and stress but mostly because I’m just completely jealous.

I’ve always been this way, when I was young and I asked my Granddad a question he would encourage me to either go to the library and read books on the subject or ask others and get a variety of viewpoints. I loved our conversations they could be so random yet always interesting. He never allowed me to view the world one way, he would remind me that everything’s is dimensional and we need to know all the dimensions to make an informed decision, ooh I wonder if it’s his fault my mind has no off button ha ha.

Beyond the sometimes brain exhaustion and anxiety I do love my inquisitive mind. Yes sometimes it breeds anxiety and fills me with fear but I do love my rabbit holes and learning. One life doesn’t have to mean one view of the world, we are a world of so much culture and beauty and yes a lot of darkness and hate but even that grows from a bias, a different view that I maybe cannot understand unless lived.

In the special education needs world we often say that all behaviour is a form of communication but to be honest I think this concept is wider. The way we behave is often based on what we have learned, our actions based on what we believe. Our beliefs start with what we are taught. So the way we behave is communicating who we are.

So to understand one another, we need to understand the lives we each live.

Rabbit hole anyone?

Strong

“Oh she does so well”

“I don’t know how she does it.”

“She is always in control.”

“She is so strong.”

These words are often spoken over me, as a mom who has faced loss then chose to adopt a child with complex needs people seem to think I’m some kind of superwoman, a special heart, so strong. 

I may be all of those things at times but I have allowed these words to stop me opening up, fearful that in my honesty people would see weakness.  

You see there is beauty in strength but choosing to be vulnerable is one of the scariest things we can do. Allowing our hearts to be transparent, now thats hard. 

Yet I often think strength and vulnerability are the same thing. 

Some days I feel far from strong, I find myself hiding in the bathroom as I let the tears fall. I feel the nausea in my stomach as my legs go from underneath me. 

I feel all of this and in this I am strong. 

When my heart beats so rapidly in my chest and I can barely catch a breath, I am strong. 

In the panic and fear I feel, I am strong. 

Yet I still find myself hiding for fear of judgement, fear of weakness. 

How wrong am I? 

You see life is going to be hard, we were never promised anything different but its in the showing up I realise my strength. 

Yes, adoption is hard, but I show up

Grieving is hard, but I show up

Being a medical mama is hard but I show up

Being exhausted from caring is hard, but I show up. 

Being lost in the anxiety is hard but still, I show up. 

I am strong, I am vulnerable, I am a glorious mess of all these emotions. 

Strength isn’t in not breaking, it’s allowing yourself to fall apart in love.

And then showing up. 

I am no longer going to hide under the words spoken over me but I do choose to stop them allowing myself to be honest. 

I refuse to allow the fear of being weak stop me from being vulnerable. 

My weakness is my strength 

In my fear I am strong. 

I show up. 

Writing again in the Five minute Friday link up.

Write for five minutes on the word of the week. This is meant to be a free write, which means: no editing, no over-thinking, no worrying about perfect grammar or punctuation. Just write. 

We all deserve to shine

How do you stop that feeling of inadequacy forming in your throat? When others words and actions feed into the negative narrative you already have for yourself.

Why do I allow them to make me feel so low?

Why does their opinions matter so much and why oh why do I allow them to speak their lies over me?

You see I am enough,

I am more than enough.

I am a kind, caring, emotional women who has the right to be. I don’t need to fit into the boxes of others and I definitely don’t need to allow others to feel better about themselves as they hurt me.

Enough is enough.

I’m learning to have boundaries, learning to ignore (or at least pretend to) and I’m trying not to allow others to tear me down.

It’s took me a long time to like who I am. A longer time to see the value in who I am. I need to stay in this place.

I deserve to be in this place.

For a time I actually wanted to do life alone, to not have opinions around me that fed my negative narrative. Loneliness felt like a antidote to self harm. Yet I don’t have to live life alone, I can do life with others as long as I have boundaries and I make sure respect is given as it should be.

I’m not your plaything, I’m not the one you can beat down on because you are not feeling good about yourself. I am a heart, a soul that deserves to be.

So if you are like me and have allowed others to tear you down please stop. You are who you are meant to me. I mean let’s put this into perspective, every blade of grass is unique so why shouldn’t you be?

Also if you are one of those that need to beat down on others to make yourself feel better then stop. Does this behaviour actually make you feel good? Do you like who you see in the mirror?

I’ve come to the conclusion that life is hard enough without us adding pain to ourselves. Maybe we aren’t where we wish to be, we want to be healthier, we want to get a promotion, a relationship, a family whatever those are goals and goals are great, but beating ourselves up on the way to achieving them does not help, belief me I’ve learned this the hard way.

Life is going to throw curve balls, dreams are going to be lost but that’s part of the journey. Knowing who we are in ourselves is the only way we will find peace.

Validation from others is only a short term placebo.

Know your heart, know your strengths and know your beauty.

Never allow anyone to dim your sunshine.

We all deserve to shine.

Is truth too much to ask ?

It’s beginning to feel in the world today that whatever you speak up about you will be criticised. A world where we are supposed to be more educated, more aware seems a lot more narrow minded than before. The live and let live attitude is lost under the intense noise of keyboard shouters and newsfeed want to be’s. Sectors of the media saying what it wants without fact checking, it seems asking forgiveness is better than permission.

I truly love that marginalised communities are being heard, not finding their voices, they have always had them but actually being heard. Yet the anger and hate directed towards them is hard to watch ( I’m privileged I know). 

I know it’s wishful thinking that the core of who we are is what will be celebrated, that our differences are special, but our hearts, our souls are ultimately the same, one source, one love.

Yet with this wide reaching social media the world seems louder and crueller. The hate that was hidden in shadows is now out in the light, radicalism is greater than ever. Telling people who they should be, what they should believe and how they should look is now classified as freedom of speech, our right. Do we really have a right to be cruel to be destructive, to harm others?  Morally and it should be legally not. We don’t have the right to destroy another, to mock, to insult, too troll.

From princes to not princesses the world has an opinion yet under the noise their are people. People that hurt, people that cry, people that die due to the words shared openly and cruelly. 

I follow the criteria of “don’t write what you would not say to someone’s face” it’s simple but it’s true. Would I impact another with my words if they stood there in front of me, would I mock their child, would I slander their reputation? Would I openly insult their lives, be racist, be sexist, be cruel if their eyes could see mine?

Let’s be honest I hope I wouldn’t do any of these things anyway but you get the point.

Social media and the news seem to be full of opinions but no facts. It’s crazy that our newspaper articles have not fact checking their sources. Is this true, did this happen, was this the reason? When I studied journalism at college I was told “do not speculate” I wonder if today’s course’s state “write the most explosive story ever and fact check it later”. The amount of lives I’ve seen ruined by guilty by public persecution and the media only for the criminal trial to prove innocent. 

Lives ruined by headlines often not true.

Yet why is this still allowed, why do we still read the headlines, why do we still click the links?

What worries me is those being lost in the noise, those whose voices that should be heard . Those making a difference in the lives of others, those in need of help. Lost in the noise of ego, hate and more ego.

How do you change the overflowing tirade of misinformation and false opinion? Should we close ourselves off from the internet, stop writing, stop reading? 

I don’t think so,  I just feel a two strand approach is needed. Firstly the law does need to change, anyone causing harm, being abusive online should follow the same rules as in real life. If something abused you in real life they would be prosecuted so being behind a keyboard does not make you less destroying. 

Secondly I think as a society we need to be holding our media to account. Headlines should be truth not fiction, the law should be holding those in power accountable. I want to read my news and read an unbiased evidenced based truth not speculation.

I just really want change, social media especially has become such a big part of peoples lives, yet if we are going to allow the words of others to impact our perceptions please let those words be truth. 

Is this too much to ask? 

A trashy soap opera.

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.

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.