Are you really my friends?

I’ve been honest here before about my struggle with friendships. How my awkwardness and self doubt has often left me pulling away from friendships. The fear of losing people has often led me to push them away.

I know why I do this, but stopping myself is a whole other battle.

Anyhow I was asked the other day about why I talk about my internet friends so much? Also are they really my friends?

So are you?

I’ve never been the best at friendships, never one for big groups. They just required too much brain power and for me to be out of my own mind more than I was willing. Family commitments and having a lot of siblings just never made me feel the need for large friendship groups. Also the dynamics of social groups mess with my mind. Cliques, status I simply couldn’t be bothered or understand. I often just don’t get people and social situations and I’m lousy at small talk.

So hello internet.

For someone who hates talking on the phone ( a whole other blog post) I found online forums to be freeing. I could chat to who I wanted and when I wanted. The groups were those with similar interests as me or similar lives.

First it was the special needs forums then with Livvy’s diagnosis it became the Rett community and then unfortunately I found myself in the bereaved family forums. All people willing to chat, support and guide me without any pressure on me to be anything but myself.

Then hello social media,

Wow I loved it, again I was given the opportunity to develop friendships with people miles away from me who just got it. Rett moms who cried themselves to sleep after watching their daughters seizure, parents trying hard not to lose their minds with their teenagers.

It was great, until it wasn’t.

I’m not sure what happened but losing Livvy changed the way I viewed the world. I couldn’t do arms length anymore. I needed close, deep friendships but I wasn’t ready. Emotionally I just couldn’t invest time or mind-space into others. I needed to heal, love on my girls and I suppose be a little bit selfish. I couldn’t be compassionate when my heart was broken. I’m sure many other bereaved parents will tell you that one of the hardest moments after losing a child is when you realise the world continues on without your child in it. I struggled with this so I hid away until my anger subsided enough to let me live again.

Hello hashtags

I laugh when writing this but Instagram and hashtags became my best friend. Literally a search engine to likeminded people. I love them, how many times would you expect #seizuresuck to appear, more than you imagine that’s for sure.

#Panhypopituitarism

#hydrocephalus #diabetes insipidus, #cerebralpalsy, visionimpaired #hypothalamicdysfunction #epilepsy

#Chroniclungdisease

#specialneeds

#complexneeds

#disabilityawareness

These hashtags have brought me in contact with some amazing people and now I’m determined not to hide from the friendships I am forming.

I have come across parents with children with complex needs with such a love of life that I cannot help but be excited by them. Their energy is contagious and their children’s smiles so infectious. like myself they live to make the moments matter. Standing up against discrimination and showing that our children matter, all children matter.

I am finding that sometimes it’s easier to be transparent behind a screen, to admit you are struggling when you are not face to face.

I have also seen waves and waves of support literally lift people out of the depths and I’m so proud to call these people my friends.

Yes some relationships I have formed are deeper, some I literally feel are family where others are not so close but I’m equally thankful for.

Some friendships will stay behind a screen and that’s ok but others I’m nervous but so excited to bring into the real world.

But all I value, all matter to me.

So in answer to the question are my internet friends real friends? My answer is this, “Completely, I don’t want to do life without them. “.

I’m ok 

Sometimes I wonder if I really should say how I feel? 

Do I upset others?

Should I pretend 

Thursday was epilepsy awareness day and I posted this photo. 

  

Everyone was so sweet and understanding but worried for me.

I hate that people worry about me.

You see I’m ok, 

I am broken and grieving but I’m ok.

I know that I have so much to celebrate every morning when I awake. 

My beautiful girls 

My adorable foster son 

My annoying husband 

I am so much to be grateful for.

I got to be Livvy’s mom, no I am Livvy’s mom. 

For nine and a half years I got to hold this sweet girl in my arms. I had the opportunity to grow and learn and change.

I believe that we all have a purpose in life and I know Livvys was to educate me on what really matters. 

The moments, those special moments that cannot be brought they are simply priceless. 

Livvy taught me to be strong, to use my voice for those who cannot speak. To fight for the rights of those that society chooses to ignore. To look beyond the normal and celebrate diversity as the gift it truly is.

Livvy awoke a soul that was in hiding. In her journey I found my own.

Yes Thursday was a hard day. One where grief sucker punched me hard. The images, infographics about epilepsy took me back to a time when my heart was breaking.

Livvy suffered from severe epilepsy, some days the seizures never slowed down. Endless medications, needles , drips to find her peace. 

These memories flooded my mind. They crushed my chest until I couldn’t breathe.

But I’m ok because no matter the darkness of grief the light will always shine through. 

Always 

People are like stained – glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.

Elisabeth Kubler-Ross

Seizures suck !!

Did you know that this week is National Epilepsy Week?

Its a week dedicated to raising awareness about Epilepsy.

I know a lot more about epilepsy than I wish and you know what?

epilepsysucks

 

Its as simple as that!

I have mentioned before on here that Livvy suffered from seizures. They constantly plagued her life. At times she would have over 100 seizures a day.  They effected everything she did. her balance, her ability to walk, even her eating. We nearly lost her numerous times to her seizures.

Today many of my friends children suffer with seizures, their lives are scarred by this illness.

600,000

Yet little is really known about epilepsy.

When asked many describe the image of a person shaking on the floor violently .This does happens but the thing is there are various types of seizures that are relatively unknown. Some are barely even visible.

Still they effect lives.

Did you know?

 

Crazy isn’t it.

So do me a favour today, pop over to the Epilepsy action site and learn more about this condition.

epliespsy thank you x

 

Not today thank you

I am a very vocal advocate for children with special needs and different conditions. Obviously the main being Rett syndrome.

Anyway for most days you will find me happily chatting about what struggles having a child with disabilities can bring and also how to help said child reach their full potential.

It is a common conversation topic and I seriously don’t mind.

Well I didn’t till yesterday, then I had enough.

It may have been an overload from a training course, it may have been the left over tiredness from illness.

Regardless the reason I had just had enough.

I didn’t want to understand.

I didn’t want to have to inform.

I didn’t want to advocate.

I just wanted to be.

I hate that some children’s lives are the topic of such conversations. Working out the right medications and therapies to get a fulfilling healthy life.

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I want to be talking about girlfriends and boyfriends and not seizures or physio.

I want my child to walk to school not have to go in his wheelchair on a bus.

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I want to hear about his day from him and not have to read his diary.

I know life is life and nothing will change this.

I also know that I love my job and raising a child with special needs.

But sometimes

Somedays

I just want to say…

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