Another’s eyes

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.

One word at a time.

Writing your heart can be both liberating and scary. Sharing your soul to another is hard. You feel vulnerable, open for judgement and misinterpretation. Yet the more I observe the world around me the more I believe now is the time for us to raise our voices, to share our stories. 

Writing Living like Livvy wasn’t easy, sharing my heart with Andre often left me broken. Reliving the memories tore open my heart. I found myself sitting upstairs praying that when I walked downstairs Livvy would be sitting, laughing, clasping her hands with her cheeky smile on face. Writing her story brought her closer but it also renewed the rawness of her loss, the gut-wrenching anguish of the reality. 

Still I am thankful I did it and I’m sure Andre agrees that the hours, days, months invested were worth it. The impact Living like Livvy has made on this world has shocked us both. The ripples the book has created and how far they have reached is wider that I have imagined or dared hope for. Reaching into the hearts of Rett parents, informing professionals and raising awareness one page at a time. 

So, I guess what I am saying is sharing my story made a difference. I’ve received messages, emails from people who feel less alone due to my words. Professionals who have been educated by my story. 

Right now, in this world people are feeling isolated, different as if they are lost in a crowd. If my words can bring one person in from the dark I will continue to write. But my story is not everyone’s, to some my life may be an ocean away from theirs. I may not be the person some can relate to, but you may be. 

You could be. 

I’m not expecting everyone to be able to write a book, but for most of us social media is a tool we use daily. What if we all started being honest on our platforms, started sharing our realities rather than the rose-tinted perception’s we feel people want to see. Sharing our highs, our victories so that people can rejoice with us but also our battles, our daily struggles.

Let’s turn our social media into a celebration of truth.

Fighting off soul tearing comparison with the power of compassion.

Removing envy with the joy of celebration. 

Life was never meant to be a pathway we walk alone. It’s a journey full of laughter and love but it also one full of sadness and tears.

Let’s love one another openly truthfully and transparency.