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.

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. “.

Not a thing

I know people mean well but sometimes I want to scream “shut the heck up. “

Only the other day I was having a conversation with someone who I have known for a while. I won’t say we are friends but we chat when we bump into each other. In fact sitting here now I cannot actually remember how we met but anyway hey ho I digress. Me digress what a shocker.

Anyhow we were chatting as you do when she turned to me and said “ I don’t know how you do it, I don’t know why you do it” then the clanger “you have to give up so much”.

Now before I seem like a complete bitch I know she meant no harm but the “it” she was talking about was fostering, adoption and ultimately Daniel.

Yet you see adoption isn’t a thing.

It’s a heart, a heart that you are promising to love, care and protect for a lifetime. It’s a web of emotions, a tangle of heartbreaks and brokenness that you have committed to hold in your arms and whisper I love you’s to.

It’s a gift, a blessing and hard work all rolled into one but it’s never about giving up it’s about getting so much more.

I know the questions was aimed at the special needs aspect of our adoption but Daniel isn’t his special needs, he is everything all squashed together into one adorable package.

I’m not going to pretend it isn’t hard at times it is but that’s ok, life was never promised to be a bed of roses.

When I met Daniel I didn’t see a list of conditions, it wasn’t the pages of hospital notes that won my heart, it was the way his tiny hand gripped my finger. Not opening his eyes or turning towards me just holding my finger tight.

My heart just opened and he jumped right inside, right then, right there.

He had my heart.

I knew it wasn’t going to be easy but I truly believe that the best things in life aren’t.

I know my friend didn’t mean harm and I wasn’t offended but this is something we have come across so many times. People telling Alan and I how amazing we are caring for such complex children. How lucky the children are.

Children in foster care aren’t lucky that they have a new home. Their hearts are broken and their souls sore. What they knew is gone and even if it wasn’t the best of experiences as they often aren’t It was what they knew, their normal.

Children who get adopted aren’t lucky, the parents who now get to call them their child are the lucky ones.

My girls, Alan and I, we know we are fortunate , we are wonderfully lucky that we get to love upon children that need it. We get to open our hearts and our home to children who need us. We get to love, care and cherish.

How incredible is this?

As for Daniel I haven’t given up anything to be his mama, I have been incredibly blessed that I get to call this wonderful little boy my son.

My heart, my boy.

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.

Sorry I couldn’t rise.

I’m not sure where my head has been for the last few weeks, I’ve completely felt a detachment from the world. On the outside looking in. I’ve been falling into an abyss of what if’s, what should of been’s and to be honest a hornet’s nest of why not’s.

Social media has been full of graduations and moving on photos and I’ve just felt angry and raw.

Grief isn’t pretty, it doesn’t come tied in a pretty bow. A ornate basket with a jar of missing tears and bottle of memories.

No grief is a raging ocean, dark, bottomless and threatening to pull you under at the least expected moment and I’ve been drowning.

I feel such a bitch but I’ve scrolled past photos without commenting, without celebrating the achievement because I was angry, I was resentful because Livvy didn’t get to celebrate it.

I couldn’t drag myself up out of the pain to celebrate others when there will be no prom for my girl, no sparkling dress, no fancy shoes.

There will be no graduation for my daughter, she didn’t even get to complete primary school let alone head out of education into the great unknown.

I hate that I’m angry, I’m appalled at myself for being jealous but my goodness missing her hurts In a way I just cannot describe.

There is always going to be moments that are raw, moments that should of been and I’m always going to try and be ok about them but I’m never actually going to be ok with them.

There will always be a Livvy shaped piece in my heart. Always another tear to fall in missing. A breath to be lost in grief.

Rett Syndrome took so much from us, it took Livvy from us and right now I’m tumbling into grief, anger and complete sorrow.

I miss my girl, I miss her so damn much.

So to those who I haven’t celebrated this last few weeks I’m sorry. My heart does sing for your moments, I’m so very proud of all of you and I’m so sorry. Sorry that I couldn’t rise from the depths of missing this time, sorry I didn’t have the strength to pretend.

I just miss my beautiful girl so,so very much.

Handsome boy

A while back we visited a local artisan market and it was here I came across the beautiful Jessica from My little thistle and a small selection of her adorable clothes. I was impressed straight away by the design, the fabric and the quality of sewing.

After chatting with Jessica she told me to get in Touch if wanted something made for Daniel, she was happy to adapt her designs to make it work for Daniel and his needs. This actually meant more than she realised.

So with a family Christening looming it seemed a perfect excuse to treat Daniel to one of her beautiful outfits.

Daniels outfit was made to measure and I’m in love.

It was everything and more than I expected.

I’m just going to let the photos speak for themselves.

How adorable does Daniel look?

More more I hear you call, well if you say so.

Honestly go check out My little thistle you won’t be disappointed.

*Ps I brought this outfit and just wanted to share because I love it so much xx

Bravery ???

I have been thinking a lot about how we view bravery, how often the word is used and how sometimes it can be detrimental rather than encouraging. How people mean to encourage yet in truth can do the opposite. 

I can only write from experience but there are times in my life when I have felt the complete opposite to brave yet have found myself surrounded by people telling me I am.

When Livvy’s was diagnoses and I found myself facing life with a child with a complex disability so many said,  “you are so brave” “ I don’t know how you cope” all statements were being said to encourage and celebrate me. Yet I was far from brave, I so wanted to run out of my life, to pick up Livvy and live in a world where disability could not enter. A world where Rett Syndrome was banished. I wasn’t brave, I was surviving the only way I knew how, encouraged by the bravery of my beautiful girl.

“I don’t know how you have gone on” this was a statement that haunted me when Livvy died. I was caught in a whirlwind of emotions. It felt like a two pronged comment, my mind actually spiralled for such a long time due to this statement. I mean how have I gone on? Do I not love my daughter enough that I haven’t just given up on life without her, what kind of mother am I? Did I fail her by not giving up? 

Nearly ten years on and I still have no answer on to the question “how I have gone on?” Seriously it has been through God’s grace and the love I have for her sisters and also the innate knowledge that she expected nothing less of me but to live this life fully and that she would certainly kick my butt if I didn’t. I was not brave, I was surviving. 

I still wish people would think before admiring another’s bravery because those words offered in love often becomes a noose around someone’s neck, pulling tighter holding those who so need to admit to being scared, to being vulnerable no safe place to unload. 

Instead please, ask them how they are doing? 

Tell them its ok to be afraid? 

Tell them them they are doing well but don’t ask them how they have got through it, because truly if you are waiting for me to get through my grief for Olivia you may be waiting a long time. 

Be a safe place for people to unload, cast no judgement about where they are at. Just listen, really listen and if you cannot find the words to support just hug them tight. I know there is no answers to the pain, no reason’s to the why but sometimes its just nice to be held. It’s not ok and it may never will be, but I am not alone. That means more than words. 

[inlinetweet prefix=””Allowing others the space to be vulnerable may be the bravest thing we can do.”” tweeter=”” suffix=””]”Allowing others the space to be vulnerable may be the bravest thing we can do.”[/inlinetweet]