How dare it

I tidied my bedroom today, a job I’ve been putting off for months maybe years. My bookcase was overflowing and my make up case was going wild.

I didn’t want to touch the bookcase as I knew it was full of memories and moments I couldn’t repeat. Full of bits and piece’s of my missing little girl.

As I started tidying up I felt extreme anger at the dust, I mean how dare it fall on her things. I know the fault is mine for not keeping on top of it, but common sense often doesn’t play a part in grief.

I remember films I’ve seen of rooms left untouched forgotten by the years, the only visitors being dust and decay.

How blooming dare it.

I wonder if my mind will ever become like the bookcase slowly building up with dust so I cannot see her, hold her memories.

How dare time go by, the days into the years, the years now into a decade.

Is time the dust of the moments?

I’ve cleaned and I’ve dusted and I’ve cried. The tears opening the rawness of the pain, the emptiness of the missing. If love could hold Livvy close she would be wrapped up now in my arms.

As I wipe I am reminded of the numerous times I cleaned those beautiful cheeks. I remember clearly brushing that wayward hair.

I remember,

I remember and I hold on tight to the sound of her laughter in my ears. The touch of her fingers in my mine.

I remember

The dust it may fall and the pages may curl but my heart holds her tight.

Time is not my enemy just the journey
towards my beautiful girl x

There are no right words

I was asked the other day by a friend If I could help her with what to say to another Mom who has just lost her child. My friend asked in kindness and wasn’t being insensitive she knows how open I am on the subject and she really just wants to be there for her friend.

I have often thought on this and whilst this is not a complete list here are a few of my thoughts.

Firstly what not to say

“Time is a great healer”

This is the biggest load of crock out there. Time does not heal anything, in fact everyday is one more day without those you love so it feels worse. Maybe we get stronger or what I believe we get cleverer at hiding our pain but time does not heal.

“They has a good innings”

Really a good innings? is there an ok age for someone to die? I’m sure people are missed even when they get to a 100 but seriously a child who hasn’t made adulthood hasn’t had a good innings.

“Well now he is free from pain.”

I’m torn on this one because I’m sure for some this brings them comfort but I find this used a lot with children with disabilities in the concept that there whole life is pain. Please use this wisely as yes my Livvy has Rett Syndrome and yes her seizures sucked, her abnormal breathing sucked but her life didn’t, she loved life.

“Well at least you had time to prepare yourself.”

I actually heard this be said to a friend whose child had been ill for a long time. It was if the knowing would somehow make it easier. It doesn’t, I wasn’t promised forever with Livvy yet this knowledge in no way prepared me for losing her. Losing a child is not something you can comprehend and not something you can prepare for.

“You are lucky you have other children.”

Yes I’m extremely lucky I have other children but they do not nor should not replace the one I have lost. Please just don’t go there or ever use this one.

“There is no disability in heaven.”

I completely get this and do honestly praise God for this but it does not help the fact that I wanted her here disability and all. Also for a person of faith like myself this trapped me into a guilt cycle, yes I know one day I will see Olivia again but that is not today and that hurts.

I’m not being flippant here I’m not, these are statements said either to me or to others in my presence. It is hard to know what to say, it’s a really fragile situation no matter the words. So it’s so important that people don’t use comments like this, I know most are said in kindness and uncomfortableness but the truth is they are not kind and being uncomfortable is not an excuse.

The truth is whatever you say will not bring any comfort, will not help the healing. Nothing can or will at this point. The loss is unmeasurable, the pain indescribable. Hearts are broken and worlds are forever changed. No day will ever be the same again.

If you really want to help a grieving parent just be there, listen if they want to talk, hold them if they don’t.

If they do have other children offer to take them somewhere for a while, sometimes especially younger children can not comprehend the impact of the loss and it’s hard on them trying not to be their normal energetic selves. Take them to the park to run around to be normal for a little while, this also allows the parents space to grief fully without trying to keep it together for the kids. Believe me I know this well, the shower became the only place I could really cry without upsetting the girls my safe place where I could unburden the grief from my soul.

Make food for the family, offer to walk the dogs, do some washing, shopping anything they need.

Or honour them with space if that’s what they require.

There is no right way or the right words as grief is unique to every one. It’s individual even family members, married couples grieve differently.

Grief is irrational and erratic it has no rules,no playbook and no preset dimensions.

I often heard people talk about the five stages of grief waiting for me to work my way through them but what no one actually tells you is that one day you may be on stage 4 when tomorrow you are relieving stage 2 all over again. It’s a constant roller coaster of emotions that never stops, there is not an off switch just like love, grief is eternal.

I told my friend to offer her friend love and to ask if there was seriously anything she could do. To hold her friends hand or hug her tight but above all to speak her child’s name.

Acknowledge the missing piece, tell her how much her child will be missed, it’s a disillusion that you are adding to her pain talking about their child because honestly you cannot. Letting her know how much her child has impacted your life and those around you will bring some comfort. Because believe me when your child dies you just don’t understand how the world carries on, how others lives just continue as normal. Knowing that your child will be missed means that they mattered and one of the greatest fears of a bereaved parent is that their child will be forgotten so please in the early days of loss, a year on, five, ten, fifty years on speak their name.

Speak their name, share your memories please don’t let their child become the elephant in the room. I love nothing more that reliving a memory of Livvy with someone, it never gets old.

Knowing that my beautiful girl lives on in the memories and hearts of others does bring me comfort.

I told my pal to just love on her friend, no false promises that it will be ok but just that she is there for her and to be there.

That’s all you can do.