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.

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. 

Countdown to 40

40

 

I realised last night that in under a month I turn 40. This is a major milestone in my life but one I am so excited for.

Growing up I remember thinking 40 was really old, I mean it seemed that my mom was 32 forever so I was sure I would stay this way. Yet time has moved on and I have been slowly creeping towards this age.

I remember when I turned 30 I was really freaked by it all, I didn’t feel ready to be 30 years old I was uncomfortable and not happy in my own skin. Life wasn’t easy and I had just started to show signs of the illness that changed my life. I look back to those days when I was chasing after 4 children under 10 and teaching dance. I remember just not feeling complete as if I wasn’t living life to the full.

Fast forward the last ten years and my goodness a crazy amount has happened. I have walked through some of the darkest moments of my life. My heart has been broken, tore up into millions of pieces and then trodden on. I never imagined at 30 that I would have to bury a child let alone two. I would have never been able to comprehend surviving the loss of my daughter and my foster son. Never in a million years. Yet somehow I have survived, my heart may never be complete but it is learning to love on, learning to beat strongly again and I am learning to live life to the full again.

I know deep down that 40 isn’t really a special age. I mean I preach often about celebrating every day we have here, but still I am rather excited for the day.

This may sound big headed but I like who I see in the mirror now. I may not be a dance teacher or able to fit my bum into a size 12 but I truly love my body and I’m so grateful to it. It has given me four amazing girls, completely different, independent ,inspirational girls. It allows me to foster two truly awesome boys, each a blessing in their own special way. My body may be a little battle worn but it’s not been beaten and I am so thankful for this.

I look back to the person I was 10 years ago and I know I have been on a journey. I use the term “self discovery” loosely  as is the only way to get close to describing  the transformation I feel I have faced.

I love who I am (yes I may have said that before) but I seriously do. I love my emotional side, no more will I apologise for my random tears or unexpected hugs. I’m empathic and I care and this is something I am proud of now. No more calling myself soppy and pathetic, I actually rock.

I love my courage, I am more willing to put myself out into the danger zone, being vulnerable, feeling scared but still moving forward.

I love my brain, it’s ok that I am a little geeky at times, that sometimes the idea of a good book wins against a movie or a night out. That I appreciate my own company and yes at times I get lost in my own mind.

I love myself and I love my life.

As I head towards this birthday milestone I do so with so much gratitude.

Over the last years I have had people walk into my life that have blessed me in so many ways. Friends that love me for me, deep true friendships that can pick up after a time apart just where we left off. Friends I can laugh with, friends I have cried on. I am so grateful for each and every one of them.

I am so thankful for my family, my daughters and my sons each so unique and so beautiful. Getting to watch them grow and learn and experience life is such a wonder, such a gift. My Dad, my Step Mom, my inlaws, my aunts, uncles, cousins, relantionships that I truly value and people I truly love.

My husband, I am completely in love with this crazy man, after nearly 20 years of marriage I still get that flutter in my heart when he walks into a room. He makes me laugh, he drives me insane, but he truly is my soul mate.

I am so thankful that I miss my Livvy, because missing someone is the recognition of an amazing love, a truly unbroken bond. My girl and I will be together again one day, but until then I am going to try and live as she did, fully and with all my heart.

So the count down to 40 begins and I’m so excited. I’m so ready to celebrate the 40 years I have been here with all my family and friends. An evening full of laughter, music and hopefully a gorgeous outfit.

Yet 40 is only the really the beginning, the start of a new stage in life, one I hope will be full of love and laughter and the people that really make my life truly amazing, my family and friends, because with them and because of them I actually love myself more at 40 then I ever did.

 

40 looking good

Wow, I’ve been blogging for 7 years

blogging for 7 years

I realised yesterday that I have now been blogging for 7 years this month.

What a lot has happened over the last seven years.

I first took to blogging to share what it was like being a mom of four and how raising a severely disabled child affected our lives. I mainly wanted to share how besides the difficulties how wonderful life could be. How Olivia loved life and lived it to the full. How our family motto was never say never. From iceskating to rock climbing we somehow found a way for our girlie to enjoy it all.

Yet only a month after my first post I was to write through the pain of losing my beautiful girl. How the darkness of grief strove to consume me. How in the depths of despair I somehow managed to find hope.

Writing my grief allowed me to feel less alone, from the comments to the messages so many of you walked along side me. Some never realising how often they were the ones that gave me strength to carry on, yes that’s you Kelly. 

I then shared my journey into fostering, my hopes and my fears but also the joy we felt when we had our first placement. How one little boy became part of our family at the first hello. As you know forever wasn’t going to be ours again and whilst our hearts were torn open and raw my words helped me find some semblance of peace.

On this blog especially I have shared the growing of my beautiful girls how they have stumbled through their teenage years into beautiful young adults, well two have my baby still has a way to go and of course a few more posts for me still to write.

Together we have celebrated their joy, cried with them through their sadness. We have laughed at their drama of which there has been plenty and you have sympathised with me through their tantrums.

This blog is part of my records of my daughters lives and how they have changed me in so many beautiful ways. Taught me patience, resilience and the meaning of pure love.

Through this blog I have had many wonderful opportunities from modelling to  reviews. It’s brought me many online friends who have wonderfully tumbled over into my real life.

This blog has also been a call to action, a place where I have fought for awareness for Rett syndrome and for disability rights. I’ve ranted on politics and so much more and of which I promise there will be many more posts to come.

Where I have written about injustice, screamed about discrimination and cried about tragedy.

This blog, these words are truly my heart in print.

Thank you for being my readers, my friends and for visiting me here in my virtual home.

Thank you for the last seven years and lets hope the next seven are full of love and laughter and plenty of words.

 

thank you 7 years

Reflective practice

At university we are studying the art of reflective practice and I am absolutely loving it.

“Reflective practice is a dialogue of thinking and doing through which I become more skilful.”  Donald Schön

I think it’s should be taught everywhere in schools and especially to those getting married.

I mean how incredible would it be if our partners ( or ourselves) sat down after an argument and reality reflected.

What  happened?

Why did it happen?

How did you react?

How did you feel?

What would you do if it happened again?

What if my darling (annoying) husband sat back after one our numerous arguments about him not remembering things and thought, this argument happened because I couldn’t be bothered to write a date in my diary. The wife was annoyed, I got defensive and shouted, I  then felt like crap. So if I remembered to remember it may not happen again.

What if my girls who have now just screamed and shouted about how I’m ruining their lives reflected on this. I was asked to bring my bacterial growth experiments otherwise known as my bowls and cups from my bedroom down to the dishwasher. I was asked numerous times, the last time my mom warned me I would lose my mobile for an hour. I couldn’t be bothered to bring them down and now I have lost my phone. I feel angry and annoyed but on reflection next time mom asks I may just do it.

See how awesome reflective practice is.

To be truthful this is only scratching the surface, I am so looking forward to learning more about the practice as I think it’s an invaluable tool to be used. But I honestly think it’s something we could all really use in life.

Like right now as I’m sitting here feeling sick from the chocolate I have just eaten maybe if I had reflected on this a few weeks ago I may not again be sitting here feeling yucky, but then again it is chocolate so maybe not.

Happy 18th Eden

I cannot believe than my second born daughter is 18 today.

Wow I have another adult.

I am so proud of my girlie.

I love her unique spirit.

I admire her passion and convictions

Happy 18th Eden Rose

18 today

Thank you for my late night chats.

For the endless perfect cups of tea you make.

Thank you for loving and caring for your siblings, your annoying brother especially.

I hope you have a fun day.

May adulthood see you living your dreams.

May you find your way in this crazy world.

Never change who you are, because you are truly amazing.

You dad and I love you so much.

Happy 18th my beautiful girl. xxxx

Happy18thEden

 

 

 

* No up to date pics are per your request xxxx

 

Sending the kids to the circus 

Ok I’m fuming right now, last night on my Facebook page I shared this 
  
Photo Credit : Sue Fitzmaurice 

About 30 minutes after I posted I received an email telling me I should be ashamed. It seems that after losing a child I should never wish any harm to my others. I should know how special they are.

Now as you can see from the picture I didn’t wish any harm to my kids and maybe they may have enjoyed the circus.

But really !!!

I love my children with all my heart but I’m being totally honest when I say at times they completely drive me mad. 

As for saying I should know better, what the f*ck.

Livvy didn’t die because I threatened to send her off to the circus. She died because of a shitty neurological disorder named Rett Syndrome. 

As for my other three girls I am parenting them the way I feel best. At times like most moms I feel like I’ve messed up. I shout, scream and often lose my patience. 

Losing Livvy didn’t turn me into the perfect parent.

In fact what it did teach me was that I had to treat my girls like normal. I couldn’t wrap them In cotton wool and be scared of anything happening to them. It wasn’t easy the loss of a child does make you over protective and frightened of everything. But raising them in a bubble wouldn’t be fair to them. 

They have a life to live to the full. The whole world to explore, people to meet, memories to make.

And right now if that means a trip with the circus, so be it. 😜

A little tense

My home is full of tension right now.

My eldest daughter is home from university and we are all slowly trying to find our places again.

Where we fit in the dynamics of the house.

I do feel for her, university was complete freedom. Pretty much getting to do want you want as long as you get your work done and maybe attend a few lectures. Having her own her own room, working to her own timetable.

I’m so proud of the way she has thrived at university. Completely independent with only the few “I need” phone calls.

So yes coming home to having to share a room with your sister (such hardship) must not be easy. Having to abide by family rules like , put your bowl in the dishwasher (strict parent here).

No truly I do appreciate its hard all sarcasm aside.

Yet still we all have to learn to give a bit.

Her sister needs to stop hating her for making her share a room.

My youngest needs to stop emulating her older sisters one stropping at a time is enough. I also want her to stay 14 for a while, she is my baby. OK I know 14 isn’t a baby but as my last own she always will be my baby.

I also know I have to learn to relax more.

Switch off from the arguments  and stop trying to fix things and keep everyone happy.

I just want my home to be peaceful, to be a place my children what to return too, not the battle zone it feels like now.

To be truthful it’s getting to me.

My children are growing up and yes I raised them to be feisty independent women and now it feels like that is biting me on the butt.

I know growing up isn’t easy, hey I still struggle at nearly 40.

It’s hard finding your place in the world.

I understand  it’s a life stage, that in a few years I will look back with laughter at the drama. It will become an affectionate memory just as the exhausting toddler years are now.

I know as a family we will survive this, we have already survived a hell of a lot more.

Still this mom is tired.

Tired of breaking up arguments.

Tired of feeling guilty that my home isn’t big enough for them to have their own rooms.

Tired of not being good enough.

So girls if you do ever read mom’s blog please know that I love you all with all my heart,

But seriously if the squabbling continues you all will be outside in the tent.

In honour of Livvy

Saturday was an amazing day, we held a Livvy’s Smile Donkey Tea Party.

The sun shone for us, the donkeys behaved and memories were made.

DSC_0090

I had a truly wonderful time.

I got to catch up with old friends and make some new.

I got to listen to laughter as it filled the air.

I got to watch children cover themselves with chocolate and cream as they ate their cakes.

Donkey rides, cart rides and so much more.

Seriously it was awesome.

Yet as I sat at home editing the photos from the day my tears began to fall.

My heart just ached for the missing piece of my puzzle.

Whilst I was blessed with some amazing hugs from some truly incredible children my heart yearned for my little Tinkerbell.

Birmingham Donkey Sanctuary holds a special place in my heart.

Each corner is filled with the echo of my Olivia.

Those first steps she took defying the Drs.

The giggles as she rode her favourite donkey.

alvis livvy

The dirty looks she gave Amber when told to sit up straight.

So many moments, so many memories.

 

I was asked why we started Livvy’s Smile and why I hold events that bring me pain?

It is simple really we started Livvy’s Smile because we are so grateful.

So thankful for the wonderful memories we have stored from Livvy.

Memories that truly get us through the darkness and we just want to give that light to other families.

On Saturday we created those special memories full of chocolate eclairs and cool moms.

Memories that will give us hope through the hard times.

Why do I it when it causes me pain? 

Because I can and because I have to.

I was blessed to be Livvy’s mom, to get to call this amazing girlie my daughter.

Livvy changed my life. 

The realisation that we didn’t have forever taught me to live in the here and now.

To live a life full of laughter and love.

 

So yes hosting these events will always be bittersweet.

I’m sure I will always return home and cry for the missing piece of my heart.

But I will never stop working hard to create memories because each moment, each memory is in honour of my beautiful daughter.

Every smile I see brings her closer.

 

Yes, I know my heart will always ache,

Grief is relentless.

Like a snake it slowly twists around your heart until you cannot breathe.

Your body craves for one more breathe, one more moment.

So as the tears fall I know they do so in honour.

Each teardrop is formed in everlasting love.

Livvy is part of who I am and who I always will be.

Livvy’s Smile is testimony to eternal love. 

IMG_0004livvy2