Well hello March, what happened to January and February? Oh that’s right Sara you got lost. Lost in sadness, lost in anxiety and lost in defeat.
2021 started wrong, I’m sorry but I survived 2020 by patiently waiting for it to end. Pretending that it’s ok, hiding in a false facade of a comradery of equal suffering. “We are all in this together” “if everyone looks out for another” “we can do this”.
What bull that was, whilst some were hosting garden parties or indoor raves I was still locked behind my door scared to breathe deep.
So 2021 you need to behave, I have no more inspiration for homeschooling. I don’t want to talk to my husband any more and as much as I love Daniel I need sleep and I really really want to hug my daughters.
I cannot pretend anymore and that’s ok but unfortunately in my brain it wasn’t. So January and February I did my familiar act I locked down. I couldn’t disguise my sadness any more so I hid. I found my anger at the injustice of the forgotten vulnerable had started to warp my life view, jealous of others park walks none the less. Shopping trips envied to the point of stupidness I mean who cares that Asda has a new bedding range.
I did it 2020 I survived you but 2021 you need to play fair.
I’m not asking for a lot, I have no desire or money to travel (lockdown for foster carers didn’t fit the furlong scheme). Just to walk along a beach to feel the freezing cold of the British sea on my feet. To take Daniel to the local farm where he can indulge in his cow stalking behaviour to his hearts content. To eat in a restaurant where someone serves me and washes up.
I want to hold my daughters tight, to be there physically if they need me. To watch Daniel be held by those that love him as we repair his attachment bonds and remove his fear of rejection. To start his therapies again and to do all I can so he gets to live the fullest of lives.
I want so much to be there for my friends, to drink coffee, babysit whatever they need. To be able to hug them when they cry, to be able to listen without being out of reach behind a screen.
I want to people watch with joy again. To be able to see those around me without fear of infection.
Right now I am tired, tired of the opinions of those who think they know best. Tired of armchair experts ripping apart years of work and dedication from scientists worldwide. Tired of hearing ‘Liberty over life’.
I guess you could say I’m tired.
The thing is it’s ok, it’s ok for you feel this way and to have this opinion, I celebrate free speech at its best. Still free speech doesn’t come without consequences and right now all I can see is free speech at its worst.
I was once told by a Doctor “what if”
I was apologising for being a little over anxious with Daniel. For getting him checked out a little early than needed. Only for the Doctor to put his hand on mine and say “what if”. What if you hadn’t of brought him in and it was that sodium issue you feared, what if those chest noises was pneumonia, what if, what if.
So right now everyone and their dog, parrot, chinchilla has their opinion on Covid 19, it’s a myth, a government conspiracy, something we just have to learn to live with. All things I definitely disagree with and to what I answer “what if”. Yet what is really bugging me now is the false propaganda of the vaccine “Beam me up Scotty” being only one of the few theories I’ve heard. I again question you “what if?
Now don’t get me wrong I’m not telling anyone they should get the vaccine, my personal opinion is ‘get in the line’ but my decision is mine and I was so grateful to receive mine a few weeks back. Yet if I am asked by another for advice I point them towards the experts, the scientific community who have dedicated their lives to the study of diseases etc. People who know their stuff. I’m not an expert.
Yet I am finding myself seeing so many people on forums, Facebook pages , seeing parents especially being attacked for their decision to vaccinate and want to get their child vaccinated. Again I cry out “what if”. What if the fear of your judgement stops that person getting vaccinated and they then pass the virus on to their family. What if Grandpa Joe cannot fight the virus, auntie Katie, cousin bill etc etc.
What if people start listening to the pseudo science of false theories and harmful articles spreading it to the extent that more lose their lives “what if”.
I love this world, our creative, imaginative, far reaching minds. The uniqueness of each of us is to be celebrated. Yet please, free speech is not free if it causes harm to others. I don’t challenge your opinions, they are yours to own what I do challenge is that before you spread them far and wide you ask yourself What if.
Over the last few days, I have been searching through some resources to work through with Daniel this week as we highlight the fact that it’s Children mental health week. This is something that I definitely wanted to bring attention to also something that we are living with each and every day. Daniel has a diagnosis of separation anxiety and attachment disorder and although he has worked extremely hard to work through this, the lockdown due to Covid has reared this ugly head big time.
Anyhow back to the conversation about resources, a number I have come across talks about the child finding their brave and maybe I am interrupting this the wrong way but telling a child to be brave can be damaging and also not allowing them to express their fear. I know from personal experience being told crying was a weakness really damaged the way I view the world and myself.
I am not a psychiatrist and although I do have a degree in therapeutic childcare I speak now as a mom who never wanted her children to be brave, I wanted them to be honest. That it is perfectly ok to be feeling the way you are right now and that together and with the right support we can work our way through it.
Daniel isn’t a coward if the fear of separation overwhelms him, it doesn’t make him less brave to need to be held in my arms. In fact, it’s extremely brave to trust my arms will keep him safe.
Whilst I understand that children finding the courage to speak up about their worries and fears is brave, I worry for those that cannot find the words to open their hearts rights now.
Will this definition make them feel less?
I believe the bravest of people are those who are vulnerable, those raise their hands and admit they are scared, that they feel broken. I know for a fact these are my people, the bravest of vulnerable warriors that allow me to be me fears, stresses, worries and all, just me.
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.
I am beginning to wonder if someone within five-minute Friday is reading my heart as the word choices over the last few weeks have cut close. At first, I feel shocked but then wonder if God is reminding me that hiding is not an option and that it’s also not healthy. How can we process emotions when we don’t acknowledge them? Yet ‘grief ‘I am not sure if this is an emotion that can be processed ,its definitely not one that we can work through, well its one I haven’t personally worked through and the end well I’ve come to the conclusion that the end of grief is heaven.
November is one of the hardest months for me and this year has been no different, I have to face the anniversary of my daughter’s death but also this year has brought so much pain my heart aches just thinking about it.
Yet I know grief isn’t just synonymous with death.
keen mental suffering or distress over affliction or loss; sharp sorrow; painful regret.
a cause or occasion of keen distress or sorrow.
Right now, the world is lost in grief, many of us cannot see past the what should have been’s, the normal, the plans being cancelled, people we cannot visit and I know it’s hard. As one who has faced a lot of what should have beens’s I get it. I did not expect my child to be born with a severe neurological condition, I didn’t expect to not be able to travel due to illness, to spend birthdays and new year’s in hospital.
I did not expect to lose her.
I have faced so many of what should have been’s.
Yet sometimes “what is” can be rather special,
No, I did not ever imagine having a child with a devastating condition, it never crossed my mind at any point. Yet she was one of the best things that life has ever blessed me with. I learned through her that life was to be lived for the moment that the reality is we are never promised a long duration, so we need to live in the present. We need to focus on the here and now and celebrate the moments.
Expectations can be exciting, but they can also bring restriction. Sometimes we have to let go of what should be and celebrate the what is.
Grief is hard and for me there is no earthly end, but I will never lose sight of the gift.
“Grief, I’ve learned, is really just love. It’s all the love you want to give but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go.”
― Jamie Anderson
If you are grieving now hold on to the why. The wonderful people you miss desperately but love so hard.
Focusing on the blessings isn’t easy and grief sometimes become a curtain which hides the gifts from us. But try, try in this season to tear back the curtain and celebrate the moments that made the memories and appreciate the memories yet to be made.
Oh my goodness when I read the word for five minute Friday was cancel I really had to smile. Was this an ironic take on the whole of 2020? I literally felt that this could be the word for the year. Cancelled weddings, cancelled jobs, cancelled holidays, cancelled parties, cancelled meet ups. So many moments literally cancelled in the name of Covid 19. Yet the more I thought on the word God pressed on my heart that I needed to cancel my negatively that I needed to cancel my fear. I needed to cancel my attitude.
Oh my, how right he is.
I’ve let myself lose my hope this last week or so. I’ve given in to anxiety and fear as the numbers have risen my hope has decreased. I just felt that I was spiralling into darkness and my attitude well let just say just cancelling it would be polite.
I don’t know what has pulled me into the despair I have felt this last week, maybe the negatively on social media. Christmas is cancelled is the main one I have read so many times.
But has it?
If Christmas is a time of celebration of the birth of Jesus well how can we cancel something that has gone before. I mean I know Covid 19 can spread but time travelling well I don’t think so. So how can Christmas be cancelled it can’t, it’s just our attitude that needs adjusting. OK we may not all be able to be together but we can rejoice as one. Send our prayers of thanksgiving in union, celebrate in togetherness. Wherever we are in the world although we cannot physically touch our hearts can join to love the birth of our Saviour.
Whilst Santa may not get to visit this year, I mean come house visits are a no go we can still bring joy in our children’s hearts. There may not be any sparkly Christmas parties but have a get together on zoom and have a cake and enjoy the real reason for the season. Let’s cancel our expectations of what should be and celebrate what can be. Christmas may look different this year but different does not have to always be bad.
Maybe this year we let go of the commercialism and the must haves and just celebrate in gratitude of what we already have. If 2020 has taught us anything is that nothing is guaranteed so love each other harder and remember Christmas is not cancelled just our expectations of what it should be.
I wonder what life would be if we could just press a button and put it on pause.
Would it allow us to catch our breaths, give us time to process or would it just delay emotions from that we cannot hide?
Yet who in the world would really want to pause 2020? Aren’t most of us wishing it away as quick as possible but the reality is until the virus goes away 2021 isn’t going to be that much easier.
Yet how about those that have given birth this year do they want to pause those first moments with their child or cherish the beautiful progression of growth?
Those whose loved ones are leaving us would they pause just to hold on for a moment or two more?
I honestly believe at times I would have paused my life back in 2008, weeks months or moments before I lost my beautiful daughter, seconds before my was heart was broken. Would I have paused just to hold her there?
Would that be right?
Would that have been fair?
What I’m learning is that life has to be lived, it has to play out all the notes that create the beautiful and sometimes tragic melodies of life. Unique symphonies for each and everyone of us.
That hitting pause button would stop the song playing yet it would not change the notes of the melody.
Still the idea of just holding on to a moment is something I have desperately craved but what happens when you press pause on the TV or a song, nothing just silence.
So regardless of the desire to hold my daughter once again I accept that her earthly melody has finished, but I do let my mind imagine how wonderful her heavenly one will be.
Its been 12 years since Olivia passed yes 12 years, 4883 days, each one so full of missing, so full of pain yet in a strange but beautiful way have been so full of joy.
I have so many beautiful memories to share of Livvy, every new person who enters into my life becomes a new heart to introduce her too. The hours I’ve spend with Daniel telling him about his incredible mischievous sister and all the wonderful moments she gave me. Though this may sound crazy but I’m sure he looks at me to say “yes mom I met her”. It fact if you forgive my brain waffling away i’m sure she send him to me.
Life is strange and whilst I write about about a song being allowed to play its own tune if I could just go back and pause 2008 before that fateful night, just pause if only on the night before when her giggle filled the air like the sparkles from fireworks making us all feel happy and so blessed. Just stop there for one more hug, one more chance to hold her sweet soft hand in mine, one more opportunity to tell her how much I love her. I would pause in heartbeat, maybe for just a moment or in reality until the timer ran out but just for one beautiful moment my heart and my arms would be holding my beautiful Livvy once again, yes I would pause.
Yet I know I cannot and I know it is not meant to be, I mean a song isn’t the same if you don’t get to listen to all the beautiful melodies that it holds. I got to listen, watch and love Livvy’s song and know one day I will hold, see and hear the sweet notes of her unique wonderous melody again.
October is Rett Syndrome awareness month and its something I always try to write about and share in hope of raising awareness, knowledge and the importance of fundraising for research. The problem is this year I don’t know what to write that I haven’t written before. If I’m honest I’m not up to date with current research treatment or therapies, I can point you towards Reverse Rett UK and Rett UK who would be able to inspire and educate you so that you can learn more, but in all truthfulness I am a little out of touch
So what can I share?
What does Rett syndrome mean to me?
I’ve said it before but I will say it again Rett syndrome is a thief in the night. It robbed me of light and left me in darkness.
It is so easy in grief to focus on the happy memories, the good times you had with the one you lost and I know without a doubt I do this with my memories of Livvy. I struggle to remember the dark days because it’s hard enough living with the missing, let alone voluntary visiting the pain . But Rett Syndrome didn’t just steal Livvy’s life it often robbed her of moments.
Seizures played a massive part in Livvy’s life from the first one ever to the 26 she had that same day to the 106 of the next. They came and stole the light out of my beautiful girls eyes. If I’m being honest I had expected to lose her to these, as so many times before we had come close. The horrible thing with seizures besides watching your child contort painfully is the medications that are needed to control them. Besides damping down the seizure activity they also reduced the way Livvy could interact with the world. Hours slept away, moments missed and memories not made. We struggled for a long time to find any sort of balance ending with a vicious compromise of a few seizures each day just to be able to see my daughter smile. Accepting that her brain had to misfire daily just so she could live and engage in life.
Bargaining with the devil in ’ Hope’.
This is Rett syndrome
I remember vividly the first time Livvy went blue, her lips so ashen, her face so pale. What in the world, how in a spilt second had my child lost the ability to breathe, thank you again Rett syndrome.
The breathing abnormalities of Rett Sydrome are a lot better recognised now but when Livvy started with this complication nobody had a clue. Dr’s were baffled, seizures were blamed and more medications were tried. I remember once being in the hospital and literally wanting to throw the SATS monitor and smash it into a wall. Watching those numbers drop and knowing I could do nothing to stop it, broke my heart.
This is Rett Syndrome.
Livvy passed her 18 month health assessment with flying colours, she was a little delayed with walking but everything else seemed on par. Some children like to crawl for longer and Livvy was everywhere and in to everything. So nothing could have prepared me for the following months watching my beautiful sparkly eyed girl disappear right in front of me. First went her words, then her eye contact and finally her balance. Her ability to hold and play with her toys were lost in the never ending wringing of her hands. Her smile lost into the endless days of screaming.
This is regression, this is Rett Syndrome.
As I’m writing this I’m finding myself so full of anger, so full of pain. The reality is Rett Syndrome stole my daughter from me twice. My heart is beating fast as I remember the fear of the not knowing, the lack of understanding from Drs and specialists who I was praying would have the answers. The loneliness of this time, my retreating from family and friends as I couldn’t explain her behaviour, I felt like a failure. I was letting everyone down, I was letting Livvy down.
This is Rett Syndrome
Gosh that hurts to write, but the truth is I cannot bring Livvy back by reliving these emotions, by sharing my heart and fear it isn’t to resurrect my daughter, if only. The reason I share and the reason I am passionate about advocating for Rett Syndrome is that today another child has been born with this evil syndrome another set of parents hearts are being broken right now. Another child is suffering .
1 in 10,000 children a year are born with this devastating condition and by raising awareness, by fundraising I can hope and pray that their journeys are less scary than mine. That treatments are found to combat the evil seizures, the fear in the abnormal breathing, the pain from the scoliosis, the frustration in the lack of understanding and the heartbreaking ability of not being heard.
I write and share in hope that one day when a child is born with the condition Dr’s will be able to say we have a cure or we have these amazing treatments that will stop the thief known as Rett syndrome.
I write and will continue to do so in hope.
Hope in action can and will defeat Rett Syndrome. In memory of Livvy and all those amazing children and their dear families, we hope.