Gentle?

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.

It’s not ok that our children died.

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 love

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

Expectations

These pesky little things that penetrate our minds and hearts.

I should be

I could be

If only

All turn into

I failed

I’m useless

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.

and I want you to say this loud

“we are enough. “

I am enough.

We love our nurses

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.

It isn’t.

Holy cow it’s March

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 broken…

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.

I want to not feel so angry, so lost.

2020 I survived you, 2021 behave.

What if you are wrong?

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.

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.

What if .

Grief

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.

noun

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. 

It’s hard. 

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. 

What do I have left to share?

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. 

Let all children dream.

If you follow my instagram account you may have watched my stories last night where I try and explain my sadness at a comment that was made a few weeks ago on one of my photos. I tried to explain why this comment had upset me  ( not sure thats the right sentiment) but feel like I want to explore my feelings a little further, so here we go. 

I had as I said posted a photo of Daniel dressed up in a vet costume a friend had brought for him, the photo as you can see here is of a little boy just loving role play and having fun. The comment posted asked me ‘paraphrased’ “Am I setting Daniel up and giving him unrealistic aspirations as he is never going to be a vet”? 

Well, how, where do I start to reply to this? I think the answer to this question has many layers, my first could simply be “Oh please do one, its mine and my sons life”. But lets be honest thats not me, it also shuts down any conversation that I feel needs to happen regarding this question. 

Secondly my response could be and the one I did actually answer with “ would you make this comment if Daniel was neurotypical, would you feel drawn to tell any other 6 year old that they cannot be what they wish when they are older? “ Maybe I am wrong and the person is a joy robber ( side note here, this is my pet name for my husband, marriage counselling maybe?)  Maybe the question asker would ask this of all children, but if I am honest I don’t think so. I believe the question was asked due to Daniel’s disabilities and what people see as his limitations. 

I will never limit Daniel by a list of his disabilities, our family motto is ‘never say never’ and so far Daniel has exceeded expectations across the board. If one day he does get his bum through veterinary school, then and only then will I let him treat my pets ha ha but until then I will encourage and support in all he wishes to do. I refuse to limit my child and I believe that every child has the right to dream. If they didn’t we wouldn’t see scientists make discoveries, artists paint masterpieces and paralympians win Gold.

These were all children who were allowed to dream.  

When I read the comment on my post, I viewed as you do the grid of the account holder and there on one of the photo’s a child was in a spider-man costume, maybe I am being a little bit of a cow but am I the only one seeing the hypocrisy in that?  I mean who am I to limit a child’s dream, but will that child really be Spider-man one day? 

So for those of you who were worried that this comment had offended me please don’t be, it didn’t one of the few things you will never knock me down for is my belief in my children. Each and every one of them I have told to aim high and to not settle. I don’t mean achieve the best pay checks ( not a bad thing though)  or have a house full of fancy things but to find their passion and to live it. I will always be the biggest advocate and the loudest cheerleader for my children, too loud my girls might say. 

The reason I shared the comment as I usually try not to feed the trolls was because I wanted to open a conversation on the perspectives of people and what they see when they see children with disabilities. I want people to think before they ask a question. Would this question be one I would voice if it was regarding a neurotypical child? Is it really a question with relevance ( I mean I wasn’t challenging her child’s desire to be spider-man)? 

Yet most of all why oh why do you feel the need to stop a child dreaming, imagination is a gift that should be nurtured and encouraged. We should encourage the dreams our children dare to dream. Celebrate when they push the boundaries from what has been, into the domain of what could be. I don’t want to live in a world where all children aspire to be the same, I want individuals, adventurers, artists, musicians. I know I want my girls and Daniel to go for they hearts desire, they may not get it but at least they have tried. 

The crazy thing about all this is that Daniel has no desire (right now) to really be a vet, he is isn’t searching university courses, or reading his biology books. He is just a gorgeous young man who finds it hilarious when Vets takes testicles off and has a strange desire to put his hands up a cows bum. 

So to all the 6 year old astronauts, pirates, super heroes and dragon tamers keep dreaming, let your imagination run free. Create new worlds of adventure and excitement. You are the future generation and I am excited to see the amazing lives you will lead. As for Daniel right now he is dreaming that his arm will grow a little longer as he just couldn’t reach that pesky calf, next time, next time. 

Seasons change.

“there is a time for everything

 and a season for every activity under the heavens”

Ecclesiastes 3:1 New International Version (NIV)

I have walked many seasons in my life, and I know one of the longest and hardest of these has been my season of grief.

From the time my daughter Livvy was diagnosed I have grieved for what should have been, the life she should have lived or it in reality the life I had expected, planned, wanted her to live. 

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Then when we lost her 11 years ago, I grieved for her physically, grieved for her missing, her smile, her touch and the blessing of her spirit.

My grief felt like darkness.  

My whole spirit crushed by the pain of missing. 

I didn’t understand the why and I was often angry screaming at the ‘why her.’

This was my season of darkness and no matter how hard I tried to pretend I wasn’t sure I would live a life with light anymore.

Yet Jesus knew. 

My dear friend sent me a link to Christian singer songwriter called Steven Curtis Chapman.  Steven and his wife lost their daughter the same year I lost Livvy. Through his grief he wrote and produced an album called Beauty will rise. This cd, these songs, the words broke through my darkness.  In the midst of my pain I could not see God in my Bible, the words lost as my tears blinded me from his love. Yet in these songs, in the lyrics, hope started to grow once again, and the promise that I could hear in the melody slowly healed my heart. 

One of the songs is called ‘Spring is coming ‘and this week as we have faced 11 years without our beautiful girl, I have held on tight to this. Not because I am waiting on the Spring though this cold weather is already getting to me, because I know the blessing of the new.  I have felt the new life burst inside of me. I give thanks and praise to the changing seasons and the love, the hope and the promise each one brings. 

So today I am sharing this with you, sharing my heart and my journey, because God has asked me to share my story. He wants all to know that he is the light in the darkness. 

“I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life.”

John 8:12 New International Version (NIV)

Jesus was and is my light. 

So, if any of you are now struggling in the darkness and if you are feeling the crushing weight of fear, doubt or anger, hold on to the fact that this time is a season and that seasons change. Life is a journey often full of pain and loss believe me when I say I know this but whatever you are facing, know that you are not alone, that Jesus walks beside you. 

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If you had asked me 11 years ago if I would know joy again, I would have said no easily, my heart was broken. I still miss Livvy so desperately and often still fall under the weight of grief but now my heart knows the promise, the promise that one day I will be reunited with her. Yet in this life whilst I walk it without her physically right now, I know that Jesus has great plans for me and joy it does come in the morning, not promising what morning but it does come. 

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So, I just want to remind you that whatever you are facing you are not alone. That you can do this and even in the crushing darkness there will be and always will be a light, the light of Jesus.