Oh my goodness when I read the word prompt for five minute Friday this week I just smiled at the irony, gentle on a day that was far from gentle for our saviour.
He was beaten
He was mocked
A crown of thorns placed on his head.
The nails hammered through his hands,
The spear pierced through his side.
Not gentle, not kind, not right.
Yet this man so gentle and kind bore this pain, bore this torture, died for us.
I struggle through Good Friday, I mean how can you find the words to honour this sacrifice. To breathe life into the holiness of the love Jesus had for me. I often find myself looking forward to Easter Sunday excited to celebrate the resurrection. Yet this time inbetween needs to be felt, this closed tomb needs to be understood.
How often in life do we focus on the good that’s coming. A journey is always about the destination, but is it? Shouldn’t we sometimes slow down and view the world that we pass As we start towards our end. Maybe we would see some wondrous sights or maybe not , yet to look is never a waste, to rush is to miss.
So as we sit in this in between time I often think of those that loved Jesus. How did they feel? Did they know without doubt that he would return? Did they trust? What would I have done, I mean I know I will be reunited with my daughter one day but I still grieve. This time in between feels hard. I know that come Sunday the tomb will be empty but this space is hard.
Yet I know without a doubt that I will hold my girl again.
Because of a gentle man who suffered a horrific death
because he loved me.
Jesus the gentle breath than fills my lungs with salvation. From nail pierced hands to my promise of eternity.
Not a gentle love, a saviours love.
Join in with five minute Friday. Write for five minutes on the word of the week. This is meant to be a free write, which means: no editing, no over-thinking, no worrying about perfect grammar or punctuation. Just write.
Often when we face a loss in our community of special needs parenting, our hearts break alongside those facing the pain. We emphasise with the anger and missing we feel the disbelief and sadness. Myself personally I ache for the pain I know those left behind will feel. Each new loss reopening a wound that is far from healed.
Yet one of the things I still do not understand about loss in the disability community is that from those outside of it, is the feeling that somehow it’s acceptable. That in some way it is less. The concept that a life lived with a disability is not as full as one without.
There is no denying that being part of the special needs community we face loss maybe more than most, the wider our community the wider amount of pain. But that’s our life, we choose to walk alongside one another through the good and the bad. We celebrate the achievements and too often we have to grieve the loss.
Yet often those outside the community do not understand our journey and more often than I would like, do not understand our joy.
Statements like “oh well she had been poorly for a while” “sometimes it’s for the best” or my favourite (irony) “God knows best”.
When Livvy died she had a devastating neurological condition. Her body faced so many obstacles, seizures, abnormal breathing, sometimes uncontrollable movements. Yes, to list her conditions it may seem dire. Yet what the reality was that yes she had this list of issues but what she also had was a life filled with love and laughter. She had a family that adored her, she had parents she wrapped around her fingers. Sisters she teased and played with. Teachers she adored, friends she loved. Her life was full of joy and mischief. She was not her list of conditions. Yet still when I speak of my missing, people speak of her with pity. When I speak of her loss, people speak with acceptance, as if her disability makes her death more ok.
Whilst I know this attitude is meant with kindness I need to share that it’s not. When someone who has a disability dies it’s not ok, it’s not even a little ok. It’s a heartbreaking, soul destroying grief.
You see people are not their disabilities they are simply people. A child with disabilities is simply a child.
So I beg of people, I ask desperately that when dealing with a grieving mother, a broken father a missing family, that before you speak of freedom from pain, limited lives or God’s choices, STOP. Whilst the lives lost may have seemed hard to you, or the disabilities overwhelming those grieving see the little boy whose eyes twinkled as he looked at them. The little girl whose smile lit up the room, their son, daughter, sister, brother. We don’t grieve the disability, we grieve the one we loved and their disability wasn’t what defined them. Our pain is not less and their death is not and never will be acceptable.
Mother’s Day, a day where we come together to celebrate all things that are Mom in whatever form that comes, stepmoms, adopted moms, grandparents being mom and so many more.
Being a mom is one of the hardest jobs in the world. The exhaustion of pregnancy, the labour of delivery, feeding, sleepless nights and so much more but yet it’s often the most rewarding role we will ever get to hold.
It’s tough and this last year has been a real struggle , ‘wow’ is pretty much all I can say about the last 12 months. From home schooling to the deep pit of fear that has been in your stomach since the words Covid 19 were first spoken, it’s been a year.
Still if I wish to challenge all moms a little now in fact probably all parents regardless of gender. What do you think is the one thing that is the hardest to cope with when being a parent?
Exhaustion, worry, finances,
Shall I share what I have placed on my heart this week. What God has wanted me to share with you all.
The hardest thing about being a parent
These pesky little things that penetrate our minds and hearts.
I should be
I could be
All turn into
I’m letting them down.
Now I’m coming to you as a mom of a five so a little experience here and also as professional of therapeutic childcare and I just want to state something here and I really want you to hear me.
You are enough
You are enough.
Our children enter this world with only a few needs, to be fed, to be warm and to be loved. Speaking confidently right now I am sure that each of your children are having those needs met. They are either grown and off living lives that you have encouraged and nurtured. They also could be there in your arms snuggling tight or even kicking out in your precious womb. They could be causing complete mayhem running around the house but all done in the knowledge that ‘they are loved’.
You are enough.
Yet we only have to look back the last 12 months and the changes this virus has brought into our lives. Homeschooling, isolation, exhaustion, fear. How many of use have felt lost, that they are failing?
My hands are right up in the air, me me.
I have watched social media posts of moms with beautiful converted classrooms with their children willingly working away. Houses spotless, make up perfect and I’ve literally cried. I have cried as Daniels homeschooling paperwork fell off the printer for the 15th time, cried as he completely ignored me as I tried to encourage him to work, sobbed at the state of my house and as for being perfectly made up, well I’ve had a shower and I’m saying Amen to that.
You see I couldn’t reach the expectations I had put upon myself and that’s ok. Because Covid 19 or not, being a mom is hard.
We mess up, we lose our temper and we suck at patience some days. Because motherhood didn’t come with super hero powers just the responsibility.
Anyway where am I going with this, well I’m leading to something I have personally took a long time to learn.
You don’t have to do this life alone.
As friends and family we are there to walk alongside one another. Reach out to friends, not only those at your stage at life. We have a wide breathe of generational wisdom to tap into.
But most importantly
Reach up, reach out to Jesus and ask him to walk alongside you. Ask for wisdom, hope and a big one for me, for patience.
Ask him to free you from the lies of the enemy that you are not enough. Free you from the untruth binding of expectations. To be beside you as you raise the next generation and to guide you as you walk this pathway of parenthood.
I ask you to look now at your child or if they are not with you bring them into your mind. As your heart swells of the love you feel for them as the love you have warms you to your very core, I want you remember.
I want you to remember
“We love because he first loved us.”
1 John 4:19
He loved us first,
He loved us first.
Remember that Jesus loves us as we love our children, that warmth you feel for your children he feels for you. He loves you to your very core.
Can I tell you something, it was something I knew before I had ever heard of Covid 19. It was something I was sure of before the nightly clapping, it was something I believed in before the rainbows flooded the country.
Nurses are incredible.
So many times I have cried on the shoulders of nurses.
So many times have my children been hugged and comforted by nurses.
Too many times has it been a nurse that translated between me and a Doctor.
Forever and some has a nurse supported me on my journey.
I don’t understand the government right now, the mighty warriors who held our frontline are being mocked and patronised. “It’s all we can give” being lost in falsehood contracts and unusable PPE.
Bonus’s for individuals who profiteered through a crisis. Yet a poor meal deal offer for those who gave it all.
Why we were being asked to stay home they were being asked to do more. Covered shifts, move wards, exhaustion, fear overcome by duty.
Yet even before the wards filled with the virus nurses stood by our sides. Yet our chosen government turns their backs once more.
Strikes, industrial action more and more damage to an already exhausted gift. NHS in crisis can only fall at the entrance of one door.
Please Prime minister you talk about the saviours as you laugh behind their backs. You want the country back to normal yet humiliate the builders.
We will not sacrifice the NHS at the alter of Capitalism. We will fight tooth and nail.
The fight that no one has the energy for yet one we cannot afford to lose. A country without the NHS is a country no one wants part of. A service without nurses cannot continue.
Mr Prime Minister, go back to the ward you were on. The ICU unit that healed you, go back now and stand before them with your soggy sandwich, packet of crisps and fizzy drink and you say thank you, thank you for my life and then hand them your measly 1% and ask yourself truly, is this enough.
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.