In the brokenness

I’ve never been one to follow the calendar. I often don’t know what day of the week it is let alone the date, this has especially been the case in the last two years due to shielding. I mean who cares what the date is, we aren’t going anywhere. Yet since Daniels death I have found myself coming slightly obsessed.

When April turned to May my heart was aching, a new month that Daniel won’t be part of and today we begin another month that won’t hold him in it, it’s so very hard and feels so wrong.

How do I do this life without my beautiful boy? I really feel the need for direction. Nothing makes sense , the things I loved are now too different without my son. Alan suggested I join him in keeping the house tidy but even thinking about it makes me tired. I mean we are just cleaning up our own things when I’m so used to changing beds because Daniel had peed on the sheets, often literally after I had just changed his pad. That boy loved a clean nappy. I should be cleaning up milk when I forgotten to clamp the tube. Weighing pads, chasing prescriptions and so much more. What i am not doing makes what I should be doing feel so out of reach.

I know it’s going to take time and it should, shouldn’t it. You don’t move on from losing your heart in a day, week, lifetime. I’m just so lost it’s crazy, I think that may be my forever statement. “I’m lost.” Then I think of one of Daniels favourite hymns “ i was lost but now I am found” maybe I will be found or find myself again.

Who knows?

Alan and I are struggling so scared about the future. It’s hard trying to make a life you so didn’t want. Everything is different, everything is hard, everything is missing Daniel. People keep telling us of the holidays we can now take, the places we can now visit, the freedom we now have. I know they mean well but this so called freedom came a high cost. Plus I never felt so free when I got to love on Daniel.

I remember so vividly when we lost our beautiful Livvy my anger, I was so angry that the world continued to turn without her in it. I feel that same anger with Daniel but with an extra element of bitterness, we lost him to what we tried so hard to protect him from. His life was stole by a virus the world wants to forget. He is just one in million statistics that we just have to accept. It’s shocking, it’s cruel and it’s so very wrong.

I’m never going to be the same person again and I don’t think Alan will either. Sometimes the spotlight is too powerful to not see the truth. I don’t want to stay bitter but the brokenness of my heart allows it to creep in.

My wonderful friend reminded me at Daniels celebration of the Japanese art of embracing brokenness, Kintsugi. Kintsugi teaches you that your broken places make you stronger and better than ever before. When you think you are broken, you can pick up the pieces, put them back together, and learn to embrace the cracks. Kintsugi teaches you that your broken places make you stronger and better than ever before. She reminded me that I had once before filled my brokenness with gold and that I will do again.

I’m beginning to think I may end up with a bowl full more of gold than china but that’s ok every crack, every bit of brokenness was made because I was blessed enough to have loved and to be loved.

To be so very loved.

My beautiful boy.

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”

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

Job hunting is painful

Ouch, my heart is beating so quick it’s a question a simple question.

Do you care for someone?

Job applications, oh my goodness when did they become so in-depth I mean I’m literally waiting for the question asking me my bra size. How much do employers need to know to see if I’m suitable for a job, why does the number of dependents matter? Are they only after those without. Then the realisation hits, I don’t have any dependents any more. My girls are adults they don’t depend on me. No one does, then to knock the realisation out of the ball park, the final question, do you care for someone?

Ok ok please leave me alone. Isn’t it hard enough that I’m applying for jobs I never expected to have. That my world looks completely different to the one I was in a month ago.

How much more of this pain can I take?

Oh my goodness how hard, too hard.

I know people have told me not to job hunt yet but obviously the bills still need paying and the day the one you care for dies, all payments stop. Giving myself time isn’t a option. Also the truth is time is something I have too much of right now. The days are endless and I mean endless. I swear my days are now made up of 48 hours not 24.

I need a focus, I need a challenge. I’m not the kind of person who can sit still I thrive on being challenged and I love being busy. Yes I have to learn some boundaries for my health and well-being but I need to do something. But what, and who am I now? For the last 13 years I’ve been a proud foster carer but after losing Daniel I cannot do this right now. Maybe in the future but not right now. I need something different, something that doesn’t make the familiar painful. Does this make sense?

But beyond being a foster carer who am I? I’m definitely not the dance teacher I was in my 20’s that’s for sure.

Could I do something in my passion, could I use my words to earn me a living? I would love that but have no idea how to make that happen.

Could I continue to advocate? When I write, speak and fight for equality and against discrimination the words form themselves. My passion allows the letters to fall from my fingers. It matters, I want it to matter.

So who, what and how?

If you haven’t caught up yet the reality is I’m in pain, I’m lost and I really want direction.

Any suggestions?

Any jobs offers?

Pretty please.

It’s to hard

When I started my first blog in 2008 it was to share my life as a mom to four amazing girls. My third daughter Livvy, had a neurological disorder called Rett Syndrome. I wanted to share how life with a child with disabilities was hard but also one full of joy. Well as the irony of life is that joy quickly turned to sadness when I lost my beautiful girl to a rare virus that happened due to her disorder and my heart was broken into pieces. It was then I was ready to close down my online space and disappear into the pain of my grief but I was encouraged to share my heart, to share my pain in hope that maybe it would make others facing the same thing feel less alone. This is what I did and I have many moments that I’m so grateful that that’s what I chose to do.

Over the last 6 years the story of my life on these pages was changing, yes I was still grieving for Olivia but through the presence of a special handsome little boy my life began to fill with joy, with laughter and with hope once again. Daniel entered my life, an emergency weekend placement that became my forever son. My beautiful, beautiful boy. Yes he had his mega list of complexities but more than that he had a smile that blessed my heart and a cuddle that made me feel whole again.

Yet I didn’t get to feel whole for long because on my 46th birthday my heart was tore to pieces once again. On the 27th April 2022 Daniel went home to Jesus. The virus known as Covid 19 claimed another life., it stole my beautiful boy.

I have no idea what to do now, my purpose has gone. When Livvy died her sisters were so much younger they needed me. This time they are adults and in fact I really need them. You see I’m lost, I’m hurting and in all honesty I am broken. I have no idea or desire to do this life without Daniel. Through the Grace of God I survived losing Livvy but right now I have no idea how to survive this pain.

Daniel needed me in a way that allowed me to be free. To allow my heart to live its destiny of loving hard. Daniel taught me how to use my voice and to advocate for him and all children with disabilities. To not hide any more but to shine in loving him.

My light isn’t shining now. I am so very lost. Do I return back to these pages and share my heart once more or have the words already been said.

Will the story read too familiar?

I have no idea, I really don’t. How do you journal the lost of another child? Do I really or should I really put words to the devastation I feel? Will putting them out there for others to see blow back at me. I do not know.

All I know right now is that I’m so very lost, I don’t know my purpose anymore and my heart, well it’s forever broken.

I miss my gorgeous girlie.

I miss my beautiful boy.

This life is too hard.

The veil of pretence

What is it about the early hours on a hospital ward that makes you feel so alone? Yes there is the hustle and tussle of people in the other rooms, the pacing of the nurses as they walk their endless steps up and down the corridor. Even the constant beeping of the machines all which should make you feel less alone but actually have the opposite effect.

I’m going to be completely vulnerable right now and tell you along with the isolation I feel fear. Right now I feel like the weight of the world is on my shoulders. Daniel is doing ok but the residue of previous visits, previous trauma tastes bitter on my tongue.

I can hear Daniel swallowing and for some reason I’m swallowing with him. Anxiety is making my mouth go dry. I’m lonely here in this side room yet I also know I’m not on a holiday and the reality is I’m extremely grateful for the individual room.

I think this is something that parents of children with complexities don’t talk about enough. The fear hospital stays bring with them. The isolation and weight of the world we feel when we are here, but also the echo of past trauma and how even though the situation is different it doesn’t allow us to breathe deep.

My husband tells me to go home and he will stay yet I cannot it just doesn’t feel right, I actually feel like I’m abandoning my boy. He tries to explain that he is also his parent but I’m sorry , I do him an injustice as I cannot hear his words over my own fear.

I guess I don’t know what to say really or why I’m tumbling over these words. I think it’s just awareness that I really want to raise, for all those that watch our stories and seem to think we are used to our hospital stays, immune to our children suffering.

We aren’t, we are trying to hide our fear to calm that of our children’s. We smile and chat with nurses we have come to know and love but in reality would rather not see again. We survive because we have to, but each visit, each stay tears at our fragile veil of pretence.

For me right now the veil is torn, I’m struggling. Please let tomorrow be a better day.

To just miss you.

Sometimes I wish for the innocence of a child. If I ignore it then it will go away, fingers in my ears means I cannot hear it. If I don’t believe then it’s not real.

But it is and I’m not.

My innocence has gone

I tried so hard to hold on but into the ground it went with you.

I mean how do you bury your child then believe the world is a good place?

How does your heart break and you still have hope?

I live a seasaw existence trying to believe through a curtain of pain and missing.

How do I have Hope, when Hope was lost?

It’s been 13 years since I lost you, 13 years to the day the whole world should of ended. How dare this world continue without you a part of it.

Grief is unfair and cruel, spiced with an extra splash of agony.

Time is a healer is the biggest lie, fraudulent words whispering off so many tongues.

I will never accept losing you, your death was not a experience for growth or a period of learning. It’s a evil, awful thing that tortures daily.

Don’t ask me to rise upon it today, today on your anniversary I get to speak my truth. My words not shielded in polite conversation. I’m angry, I’m hurt and I’m furious at God.

Why why why?

Don’t ask me to look at Daniel and be thankful that I have him now. Yes my love for him infinite but one child doesn’t not replace another. Daniel is a unique blessing on his own accord not a replacement for Livvy. That would be unfair to us all. You don’t just pop to the store to replace a child, here you go have a new one,all is better.

Don’t ask me to pretend today, pretend that this world is still a place full of joy and love and light when my brightest light is missing. Don’t tell me she shines in heaven, yes maybe she does but I’m not there and I cannot see it and I’m selfish like that.

Don’t ask me to understand if you have forgotten her or what day this is. Because how bloody dare you, if you were lucky enough to be loved by her how dare you forget that gift.

Screw time moves on or life changes she was a gift that you should forever cherish. I’m not understanding today, not being forgiving I’m raw I’m angry and I don’t understand.

My beautiful beautiful Livvy how can it be 13 years since your light left this world? How can my heart still continue to beat without you. I still feel betrayed by my own body.

I don’t understand why the world continues to turn without you. Why your time was so short? Why why why?

Maybe tomorrow I will find my peace again but today on your anniversary I’m angry, I’m sad and I’m lost without you. 9 and a half years will never be enough.

I know you wouldn’t want pain for me and I do try my sweet child, I do. But the hole in my heart will always be there aching for it’s missing piece.

I know you want me to have joy and maybe tomorrow I will again but today, today I allow myself to be real, to be in truth. To tear down the veil of pretence and grieve you wholeheartedly . To let the missing pour out of my heart, to cry, to shout, to scream, to just miss you my beautiful girl.

To just miss you.

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. 

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.