Desperate

I woke last night screaming, somehow my sleep had become a time machine and I was there again in the hospital begging my child to wake. Desperate to see her chest rise again, begging the Lord to save her.

How can 12 years just disappear in a moment?

Yet I know in grief, time is only my enemy.

I miss my girlie so much, how I wish I could just hold her in my arms once more, to just breathe in the sweet smell of her hair.

Grief is a complex devil, playing games with your heart moment by moment, memory by memory.

Does it ever end?

Only with eternity I guess.

Oh I never knew the heart could survive such pain. The crushing weight becoming bearable against my wishes.

I don’t want to sleep again, I had to leave her once I’m not sure I could do it again.

Why does your memory invade your dreams?

Is there nowhere free from grief?

I couldn’t pretend for a while, I could not create the facade of being ok in those darkness hours. So I let the tears fall and as my whole soul hiccuped through my body I allowed myself to miss her.

I let the memories swarm my mind like a tapestry of bees as they create their honey, I created my moments again. I held her in my arms, I heard her sweet giggle of mischief on the symphony of the night and I breathed her in deep and I sobbed.

I still don’t understand why I had to lose her, why Rett Syndrome had to win the battle for her life. Yet I know it wasn’t for the lack of love. My Livvy, their Livvy, your Livvy was loved with the depths of so many hearts.

If love could have saved her life she would be here.

No the question still stands unanswered, our hearts still forever broken.

I couldn’t breathe anymore the tears had tore my soul and I did fall into an exhausted sleep.

I wake still desperate to hold my daughter once again.

The new day begins,

I trust, I breathe and I hope.

Until we meet again my beautiful girl, until.

Joining in again with five minute Friday, set your timer for five minutes and 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.

I wish I had been there.

I read a post the other day describing the days of a premature baby in a neonatal unit and my heart broke. Not because Daniel was born at 26 weeks because my little fighter survived, but because I wasn’t by his side through it all.

How crazy is this that I’m torn inside by a grief, a guilt for a time I didn’t know. For a time when I didn’t know my boy. The idea of him facing what he did without me by his side breaks my heart.

The whole time before he came my son is one I cannot focus on. I cannot bare to think of the symphony of emotions he had to face alone.

I have read his medical file and my heart just tears, 26 operations before we met him. 26 anaesthetics, 26 procedures, 26 times I wasn’t by his side holding his hand.

I know it’s crazy and deep down I know it’s not my fault and I do just have to have trust in the journey but I honesty wish he hadn’t had to face one step without me.

I get frustrated when people tell me that he shouldn’t be as clingy as he is. I honestly ask them to walk his pathway and see if you didn’t want to hold on tight.

When the world has been full of procedures and strangers. Pain and suffering. When you cannot see who is picking you up tell me you wouldn’t hold on tight to the one you know, the ones whose arms to trust.

I’m so proud of this clingy I want my mom stage, because this means he knows I am always there. That in my arms he is safe.

I adore the way that when he is ill he only wants me it’s further testimony to our bond.

Mother and son.

I cannot change the past and that’s something I do have to let go. I’m just so thankful that he came to us and that his heart fitted perfectly inside mine.

The future isn’t mine to see and I will not make promises that I cannot guarantee but what I do know is that why my heart still beats I will be by his side, whenever he needs me that’s a promise.

Celebrating the gift of motherhood.

Mother’s day is a day of celebration, a day where we honour the bond of a mother and a child. The period of time you are a mother is irrelevant. Physical birthing isn’t a necessary. Motherhood is about loving someone more than yourself. Living and breathing for their dreams to come true.

I adore being a mother, from the moment I knew I was carrying my first child in my womb my heart has loved hard. I’ve made mistakes, I’ve messed up and I’m sure I still will but my children are my life, my world.

One of the hardest things I have faced as a mom is letting go, watching my children grow and flourish and become Independant and assured. Seeing them bravely love, suffer, face heartache and rejection. The overwhelming urge to take them away from painful situations, to stop them before they try. Yet as a mom I’ve had to let them be, to live is to learn.

I am a mom to four amazing daughters and one handsome son, each one so beautiful and incredible in their own right. Individual with their own needs, wishes and dreams.

My dearest Livvy is in heaven and whilst the veil of this lifetime separates us physically now. No time, space or worlds can separate the love of this Mom from her daughter. My soul craves for my girl, my arms ache to hold her. My heart will be forever missing a piece, beating with a broken melody.

Yet I would do it all again in a heartbeat.

Mother’s Day is a celebration and I have a lot to be thankful for. So I’m going to hold on tight to the memories, run forward widely into the future with the knowledge that the greatest role I get to live, is that of a mother.

How blessed am I?

Changing seasons

I’m not sure how I feel about change. I often find myself facing it begrudgingly. It’s as if I’m scared of rocking the boat, effecting the status quo. I’m so scared at times that I delay what needs to be done rather than put things outside of my control. Yet I’m usually the one telling others to reach for the adventure, push the boundaries, embrace the excitement.

Blooming hypocritical me.

November has been a month of major changes for me. My foster son has moved on after nearly eight years with us. I’m so excited for him and the move is so positive for all of us but it’s a change and I’m so lousy at change. It’s ironic saying this because as a foster carer your life can and does change over night. New placements join your family, some move on and it’s an every changing profession. I know this but it’s never easy. Even when the move is positive and families are reunited or forever families are found there is a semblance of loss that tears at your heart.

Yes you can see how you have impacted a child’s life. How you have been security in an insecure time. Your heart can be full and empty simultaneously. I worry if others will love upon them like I do, keep up to date with appointments, remember their favourite foods or the way they like to dress. It’s not that I believe others cannot love like me it’s just it’s hard to trust and hand over these special hearts.

Yet for us all there are seasons in life and as Autumn gives way to Winter I need to embrace the future and our new season. Excitement for the coming holiday and preparation for the next stage of our journey.

I know what is loved is never lost.

Who knows what the future holds for us as a family?

Who new may join our merry tribe?

What I do know is that whilst change is scary for me it is also exciting. A little flame is building in my heart for our next adventure, wherever, whoever that may be.

This is not his story.

Daniel has been adopted now for over a year and because of this it was time for the social workers to step out of our lives and allow us to move forward as a normal family. Part of the adoption support was the creation of a life-story book for Daniel and what they call a later in life letter, a synopsis of what had happened and how he became to be adopted. These letters are the child’s right to know their history to be given to them when they are at an age of understanding.

Daniel’s letter broke my heart, I thought I knew most of Daniel’s journey, but I hadn’t a clue. I knew he had faced numerous medical procedures but 26 operations before his 2ndbirthday, well that simply sucks. The number of foster placements he had and the amount of time he spent in hospital all more than one child should ever have had to face. The pain and the fear he must have felt is something I have really struggled with over the last week or so.

Livvy faced a lot in her life, regression, seizures, breathing issues and more but throughout all this she knew we were there for her, knew how much she was loved. Livvy understood that we were walking alongside her and that she didn’t have to face anything alone. It’s this I am struggling with for Daniel, how alone did he feel?

My faith is my strength but for the last two weeks I have been so angry at God and at the world.

It’s a strange situation I have found myself to be in, everything has really got to me and I have found myself raging over the stupidest of things. I was angry at Alan for being seemingly ok over this new found knowledge, angry at family members for not grasping how hard this is, not wanting to acknowledge what he had faced and even angry at complete strangers who would moan of the simplest of things, wanting to scream “What the heck, try living his life for a moment”.

Being angry at God is something I struggle with, it just feels wrong, yet I was so, so very furious at him.

If we were to be part of Daniel’s future, why the heck couldn’t he have gotten him to us earlier?

Why so many operations?

Why so much pain?

Why so much fear?

 

Yesterday I was sitting in church listening to the worship when the words being sung finally started to sink into my soul and I realised that ;

Daniel was never abandoned by God,

God never left him.

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Right there in those numerous operating rooms God was with him, as he fought against the brain bleeds and the meningitis God was with him, and when professionals were making decisions for his future, God was with them.

Daniel was never alone.

Daniel was never on his own.

When we received the call asking us to have a fostering placement for a weekend God was with us. He was in the Yes that I found myself saying, he was the one that placed adoption on my heart so many years ago ready for Daniel.

I still don’t understand why Daniel has had to face so much, just like I will never understand why I had to lose Livvy, but I do know without a shadow of a doubt that God is with us always.

As the words of the worship began to soothe my heart I realised I was free from the anger that was consuming me. Free from the what if’s and free from the past I couldn’t change.

I was overwhelmed by how much God loves Daniel and me. How blessed I am that however hard Daniel’s journey has been we are so very blessed to have found each other.

I don’t have all the answers but that’s ok, I have faith and God’s promise.

I actually shared this at church yesterday, something which scared me like crazy, but I am so glad I did, because Daniel’s story and my story of fear and anger actually spoke to a number of people and they shared their journeys with me. Their sharing allowed me to realise that whilst I don’t believe things have to happen for a reason, beauty can be found in ashes. How many of us have felt completely alone and so far from God? It’s hard in the midst of pain to remember the promise that we are never alone.  

Daniels past is not all of his story.

Every day is a new page yet to be written and I am so lucky I get to be part of his story.

I get to see all that God has planned for Daniel, the hearts he will fill, the spirits he will move and the smiles he will bring.

My boy will change the world.

I’m so thankful I get to be his Mom and I’m so excited for his next chapter.

Let’s get writing

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A year today.

I cannot believe it has been a year today. After what seemed like such an endless wait our boy has been officially our son for a whole year now, where has this year gone?

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From the moment he came into our lives I knew I loved him and the professional detachment I was supposed to have, was completely lost. Yet still I never allowed myself to hope, to dream that one day he would be officially my son.

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I remember this day last year so vividly, everyone kept congratulating me but I couldn’t accept it, not until the very moment that the judge signed those papers. I was scared to dream, scared to hope, scared to believe until that paperwork was in my hands. I can still remember how I felt when he was introduced as our son. It was as if at that moment my resolve which wasn’t that strong anyway was lost and the overwhelming emotions of love was poured into my heart. I remember this feeling when having the girls, I loved them and was so excited when carrying them but nothing prepared me for the moment that they were placed in my arms, nothing prepares you for the intensity of love that you feel.

Daniel collage

Wow a whole year and what a year it has been, my gosh I love being Daniel’s Mom. The novelty of introducing him as my son is still as new now as it was then. Just saying his new full name still makes me smile.

I have so enjoyed watching him grow and develop this last year, watching his character emerge. From the little detached baby into this cheeky, mischievous toddler.

I love being a mom and I love being an adoptive mom, although some find it hard to believe I can honestly say that there is no difference between the children born from my womb than the one born in my heart.

Daniel is such a gift, his smile just blesses my heart its crazy, getting to love on him is well just wonderful.

How did I get so lucky?

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Adoption is such an incredible thing, it’s a journey of so many emotions. I have laughed and I have cried but now here a year on I am so thankful for this journey. Whilst at times it was so hard and I felt so scared, Daniel is so very worth every moment of fear, every moment of doubt.

All I can say to anyone right now, if adoption has every been on your heart please consider it. Yes you will give a child a forever family which is amazing but the gift that you receive is so incredible.

Hearing my precious boy call me Mama will never get old.

Happy One year of being adopted Daniel, thank you for giving me the greatest gift of being your Mama. Love you to the moon, stars and back again.

Lots of love and rainbow kisses, Mama xx

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Weaning fun

This year we have been given the go ahead to really start weaning my little one. Although we don’t think he will be able to eat enough to fulfil his needs it is exciting that he can try new taste’s and experience different textures.

So starting on this journey I was rather chuffed to see that the highly-anticipated Aldi Baby & Toddler Event is returning to stores across the UK.

They have a fantastic range of products which will be perfect for our journey into weaning.

The event  will be starting online from the 10th August and in stores across the UK from the 17th August.

Weaning Daniel is going to be different from when I weaned my girls as he will only be able to eat small amounts so storage and the ability to make my own puree’s is a must, as so far I am wasting a lot of the jars and pouches I have opened.

Daniel seems to be enjoying his tastes and tries and so far we seem to be loving strong flavours and not liking pumpkin but we will see. Todays banana was a big hit.

The smile says it all.

 

 

  • I was gifted the goodies from Aldi’s for the purpose of this shout out about the baby and toddler event but all opinions about it being awesome and well worth a visit are my own.

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.