Let’s be the friend we all need.

On December 7, 2020 By rebelwithkindnessIn Uncategorized1 Comment

Over the last few weeks on social media there has been a lot of conversation about the way we talk and represent our children with disabilities. Some I have agreed with and some I haven’t. Yet I have avoided entering into the conversation as its been rather fractious and in all honesty I’m been overwhelmed by just doing life. Yet another message I’ve received today has made me feel like I need to speak up. Because when a point of view or a fear of being wrong stops people from asking for support, stops people reaching out for help, well in my eyes that’s a failing. We cannot educate or make real change in an atmosphere of fear. When the anxiety of being judged stops you from asking questions you are actively stopping progress and development.

Firstly, I want to say that being any kind of parent is hard and I can guarantee that a perfect parent does not exist. Yet for the most of us our children are our world and we wake up each day trying our best to love them and raise them to be decent humans.

Being a parent of a child who has disabilities is all this and more. Beyond typical parenting we often have to become medical experts, voices and advocates for our children.

So secondly, please be kind to yourself, life is a journey of learning. How boring would it be if we all knew everything, though believe me I am beginning to believe that some seem to think that they do.

Thirdly I just want to share my opinion, my own thoughts, maybe not unique to me but honestly it is coming to a point that I do feel that my posts need to have this disclaimer.

Anyhow I’ve had the gift of parenting a child with disabilities in two different decades and I do feel this gives me a perception of change.

When Livvy was born in 1999 disability was still very much a hush hush pity situation. The number of times someone would apologise for my child to me was appalling. You see social media wasn’t a massive thing in my world and actually it was rare to come across an image of anyone with a disability. If it was it was often a portray of limitations for fundraising etc. This made my world small, there wasn’t anyone I could celebrate my child with, in fact I think many would have preferred if I hid her away. No one talked about what she could do always what she could not.

Limitations not achievements.

This simply sucked and this was the reason I actually first started on social media in hope of changing the narrative. My daughter was a beautiful, inspiring, intelligent, amazing girl and I wanted to share and celebrate all her achievements just like I did with her sisters. So that’s what I did and slowly and surely the conversations around Olivia began to change. I stopped the pity party being the narrative of her life. Unfortunately, Livvy passed away when she 9 and a half but when we share memories of who she was they are joy filled, adventure packed, flirting moments of a life that was such a gift, such a blessing.

Still it was hard and it was a struggle and I often felt extremely lonely. I did have to hide the pain, exhaustion to keep the true joy of Livvy. It was rather a one-dimension conversation, I couldn’t risk being open in case the pity party started again.

Fast forward a decade and a bit I am now parenting Daniel in a world where yes discrimination still very much exists but it is definitely not as lonely. I love that my social media is full of children being celebrated for their differences. That disabilities are not being hushed away in a corner hiding, shame filled world anymore. That I can share a photo of a Daniel and my comments received are full of joy and celebration and the ” oh isn’t it a shame” mentality is leaving the framework of acceptance.

Yet what I really love is the community of people who reach out to love and encourage one another. Parenting is hard but fellowship and having a squad of cheerleaders chanting in support makes it a lot easier and a lot less isolating.

So where am I going with all this?

The fact that the world is more inclusive is a fantastic thing, whilst there is a long way to go for full equality believe me, I’ve seen a lot of change in the last decade. Advocating for our children is definitely what we should be doing yes the conversations regarding disabilities should be changing. People are not their syndromes, conditions or abilities. They are their hearts and minds. Yet let’s not allow this desire for equality stop the support that we give one another. Let’s not strive so much for correct terminology that we lose hearts.

The reason I have written this is because over the last few weeks I have been contacted by parents of children with disabilities who are scared to share. One had shared a family photo with a caption that caused her backlash, there was no reason. It was another’s need to educate that distracted from the truth. The photo shared was a family filled with love and laughter. Their children were all together enjoying life, making memories. That one parent is now scared to post again. Her words to me were “it feels like whatever caption I write would be wrong. I need this space to share my life, I accept the comments from people who don’t get it, but now from those who should has made me feel really low”.

Another parent asked me how she should word a post asking for some advice as she had seen others face criticism for what one had said “degrading her child”. Yet the thing is who else can she ask? It wasn’t degrading it was sharing reality in hope of advice.

You see those that live in the disability community we do have a lot to learn but our mess ups are based in inexperience, lack of knowledge and in my case often life fatigue. But we are and always will be our children’s greatest cheerleaders. We love and cherish the very bones of our babies. So, as it all forms of parenting we will screw up, but for the most part it is done with love. If our children are cross or annoyed with us when they are older, we can remind them of this and that as human beings we live to learn and as they mature I hope they realise that parenting isn’t easy and cut us some slack.

Yet as a community we need to be careful, I’m all for progression and I strive for equality for all but let’s not lose what’s special about this world we live in. Let’s love one another, support one another and be a safe place for all those trying their best in a world they wasn’t expecting. My Grandad often said “be the friend you need”.

Let’s be the friend we all need in this wonderful totally unplanned life.

Another’s eyes

On July 12, 2019July 12, 2019 By rebelwithkindnessIn Uncategorized1 Comment

I often wonder what my life looks like through another’s eyes. How do they view me? Do they see the internal struggle I face daily just to be or do they see someone in control?

You see I think I’m like a swan creating the illusion of gracefully swimming through life when in reality my feet are furiously trying to get me in the right direction.

Right now I feel like no matter how hard I paddle the current will always overthrow me. Dragging me the way I dont wish to go. Yet again everyone just sees the graceful not the exhausted.

I think I need to be stop smiling when people tell me ” I have it all together” or correct them when they say ” I don’t know how you manage to do it all”. Speak with the truth ” I dont and cannot”.

No one has or will ever have it all together. Life isn’t meant to be perfect and we are not meant to try and pretend we hold perfection in our hands.

Perfection breeds exclusion, I’m sure, no I know others dont approach me because they believe I cannot understand their struggle. That my decisions meant I’m ok with the constant life battles and that I don’t feel the weariness as they do. The fact is this illusion only adds loneliness to my weariness.

I’m tired of thinking all the time, I’m tired of medical routines and I’m tired of appointments and meetings and fear and worry.

I’m not tired of being Daniel’s mom, but I am lonely living in a world that cannot really be understood unless you live within it.

Daniel depends on me for everything and I’m perfectly ok with that I just get exhausted with the constant battles we face to get him what he needs. I’m frustrated with egos getting in the way of forward movement. I’m angry that budget cuts separates my child from moments and experiences that others can have.

But I will always keep swimming because Daniel is my reason for it all. He and his sisters are my heart but I am learning to stop pretending it’s all ok. Learning to stop saying yes when I really want to say no. Learning to stop trying to be the all as no one person can be.

So if you look through my eyes right now you will see a mom whose heart is full, whose mind is overwhelmed and whose body is in desperate need of a coffee.

Happy 3 years #notanurse_but

On November 30, 2018November 30, 2018 By rebelwithkindnessIn UncategorizedLeave a comment

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?

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

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.

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.

Warrior’s

On May 11, 2018 By rebelwithkindnessIn Uncategorised2 Comments

Now I know I have written before about my love, hate relationship with social media, how I hate the way that behind the protection of a screen some find the courage to spurt hate and abuse that in real life they wouldn’t have the guts to do, the keyboard cowards as I like to call them.

But what I really want to talk about now is how much I love it and how social media has allowed me to create some amazing networks and some wonderful friendships.

Being a Mama to a complex child isn’t easy and whilst there are a number of reasons for this, one I struggle with greatly is the isolation. The moment your child gets diagnosed or you start facing challenges different to others your world become a lot smaller and a lot quieter.

So because of this and in hope of making my world and others larger, I have decided here on my blog to feature some amazing people that I have met online and who have blessed my life by encouraging me, challenging me and generally being incredibly inspirational to me.

I am going to label this series of blog posts, The Warriors.

Why Warrior?

Well, let me tell you briefly a little what life with a complex child entails, besides being a Mama or Dad you also become nurses, teachers, carers and advocates for your child. Your days become filled with appointments, medications, therapies and fighting for all of the above.

To be truthful before I had Olivia I had this belief that services, equipment, all things that children with complex needs needed were readily available and easily accessible. Well, never have I been so wrong, the naivety I had now makes me wish to hide under a blanket forever.

Days and days, endless phone calls, emails, letters just to get equipment my child needs to survive, to thrive. Endless days and hours advocating and having to repeat myself over and over again just to be heard. A chair to keep my son’s spine in position and to keep him safe “How dare I want such a thing”. Parents of children with complex needs have to become warrior’s themselves to battle for their warrior children.

So, with no further ado,

Welcome to my first Warrior Mama,

Let me introduce you to Danielle, otherwise known as the narrator and dedicated Mama of Evie.

It was a comment on another friends Instagram post that first introduced me to Dan, the way she was encouraging this other mom really struck my heart. It literally was a virtual hug with words, I then decided to pop over to @littlefoots_journey ,Danielle and Evie’s Instagram and haven’t looked back. Evie is a little girl whose smile is enough to lighted the darkness of days, her energy, her love of life and her mom’s singing bring me daily joy. Evie is a true warrior child, having suffered prenatal and childhood strokes Evie has very complex needs. Yet her condition does not define Evie, her smile, her cheekiness and her teasing of her Mama certainly does.

Danielle is just one of the most dedicated parents I have ever known, nothing is too much for her if it means Evie gets to have an experience. She cares for Evie with such enthusiasm, her singing is adorable, and my Daniel could listen to her read stories all day. When I play her Instagram stories, Daniel gets so excited.

What I love about Danielle is her desire to make the most of everyday and every experience for Evie, like myself she knows we are not guaranteed forever, but nothing is doom and gloom, it’s all about making those memories, something you know I am passionate about.

She makes some amazing sensory activities that I confess to have copied, her excitement getting Evie ready for theme days is contagious and as for Halloween, well let’s just say it’s incredible.

Danielle has walked some hard and scary moments with Evie, yet she does so with such transparency and courage than she inspires us all.

Her honesty is so refreshing, she admits when she is scared and that is so liberating for other parents who are walking similar journeys. Her words inspire and encourage so many.

Her love for Evie is evident is all that she does, and I honestly love her for it.

I have yet to physically meet Danielle something we are planning on remedying soon, yet I actually class her as one of my dearest friends. I don’t know if she realises how her messages encourage me and how much her friendship has blessed me.

So, for my first Warrior Mama post, I would love to introduce you all to Danielle, one inspiring, beautiful Warrior Mama.

Losing my balance

On September 28, 2017 By rebelwithkindnessIn UncategorisedLeave a comment

There is a saying that “if you want to make God laugh tell him your plans”. Well I think the same should be said for Daniel as soon as I told him about my excitement to attend Blog on Xmas last weekend we then ended up on our local children’s ward.

All joking aside whilst I was gutted to miss the blogging conference being by his side is exactly where I want to be.

Thankfully he is doing ok but it’s another reminder of how life likes to throw you curve balls.

Daniel has a form of diabetes that needs balancing, too much or too little can cause us an issue.

Finding balance isn’t easy but it’s a life lesson we all really need.

It’s been a busy couple of months in my chaotic household it’s not an over exaggeration to say I survived summer by the skin of my teeth. I’m exhausted and emotional not a great combination.

Finding balance has been far from easy.

Life is being a little strange right now, relationships are changing and I’m hurting myself with expectations that often get crushed. My lack of balance is affecting my clarity I’m trying to see the wider picture which isn’t that easy when you are smack in the middle of the situation. Taking a step back isn’t always my first decision and hindsight is just that , hindsight.

Plans can and will change and whilst I thought I was getting better at accepting this I’ve realised I’m holding on to so many things that I really need to let go.

Change is inevitable so I must learn to flow with waves and just sit back and enjoy the ride.