Living to love

I wanted to write about this last week, explain what had happened with Daniel but for the first time in a long time I just cannot. I cannot find the words to describe the fear, the words needed to give light to the darkness.

Let’s just say I was scared, frightened to the point where I couldn’t breathe.

I’m so thankful for the outcome, thankful I got to bring my boy home but I think it’s going to take time to actually process this last week.

Everyone tells me how strong I am, how much I face yet they don’t seem to understand when I say I have no choice. You see loving someone doesn’t come with guarantees. No one promises you a life full of unicorns and balloons. You take a step in faith, in love.

When we adopted Daniel I knew I was opening myself up to fear. Embracing the unknown yet with the knowledge that he was extremely complex, that he was vulnerable.

Some people ask me why, yet why not? Just because I didn’t birth Daniel doesn’t make our bond any less strong. I do wonder if someone asks my friends who did birth they children “why they do it”. With Livvy everyone used to ask “how do you?” Not “why do you?”

He is my child, my son.

Love is a choice, loving my son is the best choice I’ve ever made.

So yes my heart is healing and fear is holding time but love, love is the greatest bond, the greatest emotion and the very best reason to be living.

Living to love.

Starting well

So I’ve the started the new year the way I wanted, prioritising where my focus and energy needs to be at this given time in my life. It’s amazing how pure exhaustion and sleep deprivation can make you more focussed and determined but it is something that’s been on my mind and heart for a while.

It’s been a mixture of emotions, I have felt a lot of guilt. Saying no or I can’t doesn’t sit easy with me but there has also been an enormous feeling of relief. I am focusing on giving myself breathing space, areas of calm and a chance to grow in the direction I want to.

Why is looking after ourselves so hard? Is it a female thing? My husband has no problem with saying no in most areas, sometimes without a second thought. He does not twist himself up inside and second guess himself. He makes the decision based on his needs and time. Whilst sometimes this drives me mad I do admire his commitment to himself.

Every book or information I read tells me that self care is a must, that to be a better wife, Mama or generally better I need to rest and recharge yet I never seem to block time into my diary, or I give it up easily.

So yes whilst I’m feeling a lot of mixed emotions I know I’m taking the first steps in the right direction. I’m making plans just for me and beside Daniel’s health I am not changing them for anything else. I can already feel the change in myself. Right now I’m fighting a cold virus and whilst I feel blooming awful I don’t feel pulled apart by all the people I would have perceived in my head to have let down.

So I’ve started as I mean to go on. I now only have to reorganise the house, look closely at my finances and get some more sleep and I will be well on my way to a more relaxed 2019.

Here’s hoping.

My word for 2019

So here we are on the eve of a new year and the ending of a old. I cannot say that 2018 was the hardest year of my life as nothing compares to 2008, but my goodness it has sucked at times. 2018 has been a year of growth, I’ve learned more about myself than I could have ever imagined. For years I have been professing self confidence or self awareness but this last year I have owned my words. I am very much a work in progress and I have a lot let to achieve and change. Still I am so ready and have already began, who needs a date on the calendar to start, everyday is new beginning a new opportunity to live the life you want.

2018 has brought me so much, I have friendships I cherish, new opportunities and exciting moments that have become incredible memories. We didn’t get to experience many adventures but that restriction in itself has allowed me to grow and finally learn my self worth.

That leads me nicely to my word choice of 2019, WORTH.

2019 is the year I want to continue working on my worth. Learning to see the value in who I am. Appreciate all that I can do. For a long time I have mixed up self worth with ego. That to pat oneself on the back is egotistical and wrong. I’ve searched for the value of myself in others opinion’s not knowing my own truth. 2018 has taught me some hard lessons, that sometimes no matter how much you try or do for others it doesn’t always make them respect or love you more. That I am also not responsible for everything in this world, that others have responsibility too and that sometimes things will just not work out or be as you wish it to be.

I’m learning that it’s ok not to actually like others, that it’s not evil to just think that you don’t want that person in your life.

Realising that the things you do should be in joy not just obligation. If you find yourself dreading a meeting, a group that you don’t actually need to be part of you can leave. It’s not letting people down by admitting that this isn’t your place. I mean what use are you if your heart and mind are not invested?

I have realised this last year that I don’t need to belong anywhere, sometimes I want to and that’s fine but I don’t need to. I can go places and enjoy the moment without wishing I had been invited into a group or a conversation. I am finally happy in my own skin.

Non of this is saying that I don’t want people in my life in fact just the opposite, I want to find true value in friendship, build stronger bonds and definitely make more memories.

I’m excited for 2019, I’m nervous of the changes it will bring especially as we continue to foster and extend our family. I’m excited to watch Daniel grow and start staying at school longer. I’m praying his health is stable and he gets the opportunity to live fully. I’m terrified that my baby girl is going to become an adult this year, it was hard watching her sisters come of age but she has and always will be my baby so it’s hitting harder with her. My girls have all changed so much over this last year. I’m hoping 2019 is a year of goal reaching and dream making for them. Also for the two loves that have their hearts you two are both family and I pray 2019 brings you both your dreams ( beyond my beautiful daughters of course).

For my long suffering husband ( his words ) Alan. I want you to share my word with me, you are one incredible man and I only wish you would know this more. I wish adventure for you and excitement full of joy and memories. Remember to laugh a little more and just enjoy the moment just because.

As for me I want to continue my journey of loving and laughing. I would like to be a little more organised and a lot let anxious but I’m ready to celebrate who I am right now and who I will become. I’m excited for 2019 a year of making more memories. Of only saying yes if I really want to and allowing myself the freedom to grow and learn.

May it be a good year, may we make it a good one because let’s be honest the date on a calendar does not define our destiny, we do.

A date I didn’t want in my diary.

When your child is born your mind is full of the moments that are coming. The special dates that will fill your calendar. You start planning for the celebrations, their first birthday, their christening, their first day at school. Your mind races forward into their future, will they fall in love, will they be happy? So many will they be’s just as it should be, yet no parents expects to add, when will I lose them? How do you add how to plan their funeral to this future planning list?

Yet when your child is born with complex needs these thoughts invade your mind even when you try hard not to allow them. You live in a constant battle between hope and fear.

When we were told by Livvy’s consultant that he couldn’t promise us forever our minds went to places no parent should ever have to go.

When we lost her, another date appeared in our diary. Not one of celebration but one of brokenness.

We do mark the day we lost Livvy yet I know others that don’t, they don’t want to dwell on the day they lost their child and I get that. Yet for me personally it would always be the elephant in the room, the day my heart broke into pieces.

We take Livvy flowers and decorate her grave, not in celebration but in appreciation. Thankful for the gift of being her Mama, for the wonderful nine and half years she blessed this world.

It may seem strange to some but the day we lost her is a day I have to acknowledge, an anniversary I have to remember. I have to allow my heart the space to break and my mind to grieve. It’s a day where I can admit that life sucks without her and I’m still annoyed the world keeps on turning.

It’s also a day where I remind myself how lucky I was to have her and how my journey isn’t finished. It’s a day I love harder on her sisters, her new brother and of course her Daddy. I hold on to the gift of life and the memories we have and those we have still to make. Make plans for magic moments to come. Places to visit, friends to hug.

Yet the only thing I can guarantee about this day is that I have no idea how I will feel and that’s perfectly ok. It’s a day I don’t have to enjoy, have to make special it’s a day I just have to be. To be whatever my heart needs it to be.

Whatever we need it to be x

Happy 3 years #notanurse_but

Have you ever been awake at 3am suctioning a child, praying that you can stay at home and not end up visiting your local hospital yet again?

Spent your night making up medications? 

Changing yet another bed, fixing another tube?

Giving another injection? 

No 

I have and thanks to the #notanurse_but campaign I know that I’m not alone. 

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That when I am exhausted and feel close to breaking, I am not alone. 

When I am scared of what the future may be, I am not alone.

The gift of having someone who gets it, who lives it can never be underestimated. 

Yet when you are living a life that’s so alien to many it’s literally priceless. 

 I am so thankful for Wellchild and it’s #notanurse_but campaign, for highlighting the impact of caring for a child with complex needs.

For shining a light on a subject that seems to have hidden in the darkness for such a long time.

The campaign has allowed professionals but also family and friends a little insight into this world that we live in.

It has highlighted areas of need.

It has campaigned for awareness, understanding and progress. 

So many have come to me after watching the videos shocked, but with more of understanding of the life I live. With a new awareness about why I cannot make events, why I cancel so often and why I look so tired.

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It’s lucky he is so cute x

I am so proud to be a Wellchild parent ambassador, so proud to know some of the amazing families that have taken part in the #notsnurse_but campaign. 

Proud of the way they are shaping services, and campaigning hard so that our children’s voices are heard.

Incredibly proud of the way members lift each other daily, supporting, encouraging and sharing the vast wealth of knowledge that we have. 

Making the world in which we live feel less alien. 

Making us all feel less alone. 

Today is the third anniversary of the #notsnurse_but campaign, three years of incredible support, guidance, awareness and friendship.

Happy anniversary #notanurse_but campaign. 

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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.

Ten years too long

Dear Livvy

How can it be 10 years since that fateful morning?

How can it be that the years have now turned into decades?

How have I survived without you?

How am I surviving?

When you first left us Livvy I was sure I would die from my brokenness. I couldn’t understand why or how my heart continued to beat without you. I cried myself to sleep with guilt for surviving, for living when you didn’t.

But as the days turned into months I learned that my journey wasn’t over yet. That my job was to make your legacy known.

To share with the world your legacy.

Your legacy of love!

Livvy George you loved life with every breath, you tried to cram so much into your day.

Making your moments, loving on others and laughing hard.

Losing you only reinforced the lessons you had been trying to teach me in your lifetime.

Make the moments matter and love hard.

You didn’t care for fancy food or designer clothes all you wanted was that one last hug, that one last chocolate biscuit.

You were strength baby girl, fighting every day with sheer audacity to pack every second with love and laughter.

You were hope, seeing you defy doctors encouraged, challenged and celebrated everything.

You were love, unconditional , open honest true love. You came as you were and accepted others just the same.

In the past ten years I have lived life by one rule, What would Livvy say? Have I given enough, have I helped enough, have I loved enough?

When I have struggled and felt like giving up, I remember and rely on your strength, you never gave up even when others around you had.

When I have cried and felt like withdrawing from the world, I remember your smile and your mischievous ways and stay present.

Your legacy is in all of us that had the gift of knowing you and now thanks to the book written about you with those that didn’t.

As I watch your sisters grow I wonder what you would have been like now. Yet I also see you in them too, in their smiles, in their laughter, in their strength. I know you would be so proud of them as I am. How they refused you let losing you close off their hearts, they have and they still do hurt but they do not ever give up.

Livvy I wonder if you see what we have done since we lost you, the children we have called family through fostering and the baby brother I know you would have cherished. I often look at Daniel and see you, he is so cheeky at times and has us wrapped around his little finger that the feeling is so familiar.

I pray you are as proud of us as we are and always will be of you.

Ten years my baby girl, how the heck has it been so long? I still wonder why the world continued to turn without you. Yet I know that’s exactly what you would have wanted. You would have kicked my bum if I had given up.

I miss you, these three words don’t seem to hold all that I want to say but they are my heart. I MISS YOU. There isn’t a day, a minute a moment that goes by when I don’t.

Forever my baby girl.

I love you to the moon, stars and back

Mommy xxx