Downright Joy

Discovering joy in unexpected places – a journey into parenthood and Down's Syndrome


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Questions, questions…

We’re going to have a baby.

Six little, life changing words. And no…. this isn’t a personal announcement, sorry to disappoint.

It appears that just simply saying them is no longer enough. Social media has fuelled the creativity amongst expectant parents and they are finding more and more wonderful (and not so wonderful) ways of announcing their life changing news.

There are the more obvious ones, often involving feet. Hairy pairs of flip flopped feet lined up alongside pretty, pedicured toes and a cute pair of tiny flip flops.

Flip flop announcement

Then there’s the perfectly placed family of safety pins with a smaller pin inside the second in line.

safety pins

Or the loved up couple on a woodland walk, holding a vintage chalk board sign bearing the words and then there were 3 or something similar.

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I love them all.

There’s also the increasing trend of the Gender Reveal Party.

Guests are invited to place their guesses.

He or she, what will it be?

 Your vote…pink or blue? And leave a name suggestion too.

Then there are those that are, perhaps, a little questionable. A somewhat dubious cake posing the question…Will it be a cup cake or a stud muffin?

Sand couple                                             We're here cake

Or even the “We’re Here For The Sex” cake. Yes, really.

My particular favourite has to be the pink or blue champagne. Though, after a glass or two at that party, you risk forgetting what has actually been announced. Blue or pink.pink blue champagne

I love them all.

I love the hope – the joy and the excitement they generate. I love the fact that they celebrate a new life. A baby. Their baby. I love that they acknowledge it as a person. A precious baby, a precious new life. I share their joy.

Welcomed. Wanted.

What will it be?

But not every expectant parent wants to celebrate. Or even make an announcement. For whatever reason. I cannot judge them if they do not. Some start off by announcing and celebrating, until a routine scan brings the party to an abrupt end.

A problem. An anomaly. Or perhaps just unplanned leading to some very real difficulties for the mother/father.

Heart wrenching dilemmas.

So the language changes  as does the question. Often not from the parents, it has to be said.

The contradictions begin.

The word baby is replaced by the word foetus. It’s no longer a person to be looked forward to. To be celebrated. To be wanted. It’s a problem.

A fetal anomaly.

Unwelcomed. Unwanted.

A widely held view is that it’s not a baby at all. It’s a future person – according to Catherine Joynson’s recent blog reflecting on a report into Non Invasive Pre Natal Testing (NIPT) from Nuffield Council of Bioethics.

Not an actual person. A future person.

Yet, over 90% of the time, at the moment a prenatal diagnosis of Down’s syndrome is given, that future person becomes a no future person.

Women, couples, have a way out. It’s a very painful one. But it’s there, under the banner of choice. Autonomy – a word that has become sacrosanct. Termination is, invariably, the go to option.

The word foetus (fetus) in Latin means offspring. The bearing, bringing forth or hatching of young. It is a process.

And you will never convince me that it is in the mother’s best interests, (other than when her life is in danger) to help her to get rid of her offspring; to bring that process to an abrupt end. We owe it to women to find better ways to help and support them through birth and bringing up their offspring.   Instead, we – society – plays the choice card. The Ace of Spades. To end the game. Silence the opposition.  Kill the debate. The death card.

Choice has so little value when the menu has been limited. Is it really a choice at all…when there are so many external influences placed on women from all corners of society?

No, the question on these women’s lips is not “what will it be?”

They have been told that already. A Downs baby, disabled. A burden; a child with learning difficulties. A strain, emotionally and financially. Outdated and misinformed ideas fill their heads. And, like I did, they believe they couldn’t love a baby that isn’t perfect. They believe they wouldn’t have the strength or the resources to care for a child like that. They are almost certainly broken-hearted. Their dreams have been crushed. The party over, before it could even begin.

These women, these parents, are badly let down. My heart hurts as much for them as it does for the babies they had, perhaps, planned to celebrate.  They have no idea how much they would come to love their baby, their fetal anomoly, as I did mine.

We must surely help women to birth their offspring, not kill them.

To be or not to be.

That is the question.

dreamstime_s_86849970

To quote Lord Shinkwin, a disabled peer, speaking recently in a debate about Abortion on the grounds of Disability:

 “Well this fetal anomaly, this proud Member of your Lordships’ House, is having none of it. I utterly reject this medical mind-set that clings to the idea that a disabled baby is a medical failure to be eradicated through abortion. I beg no one for my equality. I know I have as much right as anyone to be alive”

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Rhinos & Elephants

The Duke of Cambridge, or Prince William, as he’s more fondly known, has a little girl called Charlotte. Charlotte turned one a few months ago. Charlotte is a beautiful little girl. I smile when I see pictures of her. She is a bringer of joy. Charlotte is too young to understand the attention that surrounds her. Her parents will do all they can to protect her from any harm. As she grows up, she will undoubtedly become more aware of how the world views her. Most will adore her, but some will hate her. I feel sorry for Charlotte.

Yesterday, her father gave an impassioned speech about African elephants and rhinos. These magnificent animals are under threat from poachers. From people who want to make money out of them. The Prince said.. “Rhinos face extinction in our lifetimes, as we struggle to correct lies about the supposed benefits of using its horn as a drug,”

They could be gone from the wild by the time Charlotte turns 25.

This is sad. Very sad. It is abhorrent that a price tag is on these animals in the first place. They are priceless.

But all is not lost. The Prince reassured us.

He said, “There is huge momentum building from governments, businesses, conservationists, and the public to take the steps required to stop the killing.”

Standing up for those who have no voice. Doing all they can to stop this massacre. Fighting greed and debunking the lies surrounding the health benefits of the elephant tusks.

This is good. Very good.

I have a little girl called Hazel. Hazel is about to turn 5. Hazel is a beautiful little girl. She makes people smile. She is also a bringer of joy. Hazel is too young to understand the attention that surrounds people like her – people with Down’s syndrome. As her parents, we will do all we can to protect her from harm. But, as she grows up, she will undoubtedly become more aware of how the world views her. Many will adore her, but many more will hate her. My heart breaks for Hazel.

The onset of the more advanced prenatal screening, or NIPT as it is known, means that more and more countries are racing towards “eradicating Down’s”. Though, of course, they will never actually achieve this as women will keep getting pregnant with babies that carry an extra chromosome. So they will terminate. Simple.

By the time my daughter reaches the age of 25, Denmark could well be “Down’s syndrome” free. Actually, this may happen by the time she is 19, if, as predicted the last baby with Down’s syndrome is born there by 2030.

And, as with the rhinos, there is also huge momentum building from governments, businesses (pharmaceutical companies), and parts of the medical profession. Only this momentum is not trying to stop the killing. It’s supporting it. Promoting it. Presenting it as a good thing even. Telling us this is choice. Poised to roll out the new non-invasive prenatal test far and wide without fully exploring the ethical implications.

This is sad. Very sad.

It is abhorrent to me that babies with Down’s syndrome are being given a price tag. A tag that quantifies how much of a saving can be made by the NHS if they are aborted. And, as many suspect, a tag that quantifies how much money can be made by the pharmaceuticals who promote these tests.

People with Down’s syndrome are priceless. As are you and I.

So now please allow me a little poetic licence in re-hashing the Prince’s words …..”People with Down syndrome face extinction in our lifetimes, as we struggle to correct lies surrounding them.”

There is another momentum building however. And it’s gathering speed. It may not have royal approval or backing, unlike the rhinos and elephants, but it is gaining attention.

Hour by hour. Day by day.

I am honoured to be part of this ever growing group of people that are standing up for those who have no voice. Exposing lies, debunking myths and bringing joy and hope to parents faced with a diagnosis of Down’s syndrome.

This is also good. Very good.

 

Watch actor Sally Phillips investigate the issues surrounding the new prenatal screening test in a new documentary being aired on BBC2 , 5th October, 9pm.

 

#dontscreenusout


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Voices

So many voices just now.

Voices of reason.

Voices of hate.

Voices of sound arguments.

Voices of the implausible.

Voices that are angry.

Voices that are incredulous.

Voices that are disappointed.

Voices that are elated.

Voices that are fearful.

Voices telling lies.

Voices telling truth.

Voices twisting truth.

Voices that are scared.

Voices that are triumphant.

Voices that are evil, hate filled, stirring up violence.

Voices that are compassionate.

Voices that give hope.

Voices that speak against injustice.

Voices of the classes. The rich, affluent, well off, comfortable voices.

Voicing.

Voices of the poor; the poorest in society.

Needing to find a way to even use their voice at all. Their views are so rarely sought; they fail to meet the requirements for an educated debate. Their opinion does not count. It is uninformed. It is uneducated. It is unworthy.  It must not be allowed to have influence unless it first becomes those things. It’s too risky. Too flawed.

I think I may have heard this sentiment elsewhere and it makes me uncomfortable.

I recognise my past failure to listen to this kind of voice. I have ignored their cries. Ignored their anger. Silenced their voices. I am not a champion for the poor. I do not claim to know what their lives are really like. But I have judged them and, at times, hoped they would not impact my life too much. I don’t like mess.

And some voices are never heard.

They are silent.

Unable to speak.

Deemed unworthy of a voice at all. They don’t reach the standard of the informed or educated.

They are seen as a “risk“. A problem. Too costly. Too flawed.

In the UK around 90% of babies prenatally diagnosed with Down’s syndrome are never given a voice. Their voices are silenced. Even those that are given a voice may then go onto face ignorance and discrimination. Their voices are ignored. Deemed irrelevant.  “Backward” or worse, “retarded”. Never amounting to much.

I cannot ignore their cries. I cannot stand by as their voices are silenced.

My own little “risk” is nearly five years old. She has not yet truly found her voice. And yet she speaks more loudly, more beautifully, more lovingly and more joyfully than any other voice I have heard. She speaks into my life and the lives of those she meets. Costly? Hugely so, but a price worth paying a thousand times and more. She gives back far more than she ever takes.

Prejudice and intolerance come in many forms and I am not immune from their guises.

Voices need to be given to those who have none. However costly. However risky.

And the risk may be overwhelmingly worth it for all.

Listen for the voices we cannot hear. Voices of those who are actually more alike than different.

So I say this firstly to myself for I am guilty of so much that has not helped others: Shout louder than the voices filled with hate. Listen to the voices who are disappointed, fearful and hurting. Whatever their background, wherever they are coming from. Offer hope not judgement.

“Love must be sincere. Hate what is evil; cling to what is good.”


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Handbags and gladrags

Once upon a time a woman decided she wanted a handbag. Her friends all had handbags and she decided the time was right for her to get one too.

So she went to the handbag shop and asked for a new handbag.

The shopkeeper told the woman there were two types of handbag to choose from. Blue or pink. The woman said she really didn’t mind what colour handbag she had, so long as it was a sturdy one, without any flaws in the leather.

The shopkeeper smiled, handed her a blue handbag and congratulated her on her new acquisition. The woman took her lovely new blue bag outside into the big wide world to meet her friends and compare it with their handbags. The woman was very happy with her choice.

A while later another woman entered the handbag shop and excitedly asked for a new handbag too. This time the shopkeeper handed the woman a pink one. She was very pleased as she had secretly hoped that it would be pink but hadn’t dared to ask, although, of course, she would have been just as happy with a blue one.

The shopkeeper continued to do a roaring trade in handbags and most people were very happy with their purchases.

One day, a young woman came into the store looking for her first handbag. Nervously she looked around at the choice. Blue or pink (neutral was also being introduced as there was now a growing demand for this to be an option.)

The shopkeeper handed her a bag. It was a beautiful bag. Vibrant pink. It stood out from all the others. However, the woman looked at it and shook her head.

 “I don’t want that one,” she said, fearfully.

Why not?” Asked the shopkeeper.

“It’s different. It won’t work properly.”

The shopkeeper nodded in agreement.

“Well, it’s entirely your choice.” He said, failing to tell her of the beautiful bag’s potential. Of all it could be to her. Failing to help her see its enormous possibilities whilst not denying its limitations.

Failing her.

“No. It’s flawed. It’s not fit for purpose”. Her mind was made up. “I don’t want one that stands out. I want one that looks the same as everyone else’s. Take it away. I’ll come back when you have a better one in stock.

“Of course,” said the shopkeeper, “no problem.”

The woman left, sad, hurting, empty handed. She had made her choice. It wasn’t easy but she felt it had to be done.

Sometime later, another woman entered the handbag shop, accompanied by her husband. He did all the talking.

“We want a handbag.” He said abruptly. “It must be a blue one.”

 The shopkeeper looked behind the counter.

“Sir, we only have pink ones today. I cannot guarantee you a blue one. Here, this is your handbag.”

The shopkeeper showed the man a beautiful pink shiny handbag and then handed it to the woman. The woman’s eyes lit up for a second. Then she lowered them. She knew it would not do.

“It is not blue,” said the man. “It will not do.”

He took the bag from his wife and handed it back to the shopkeeper.

 “Take it away immediately. We will return when you have a blue one in stock.”

And with that, the man marched out of the shop followed by his wife. She had not uttered a word.

The woman had no choice.

Finally, another woman entered the handbag shop. It was getting late and she was in a hurry. She didn’t have time to really look at the handbag she had been given until she got out of the shop. She immediately noticed it was different to all the other handbags she had seen. Very different – some would even call it flawed. And, although at first shocked by the handbag, quickly the woman began to love it and wanted to keep it. It was her handbag.

However, when she showed the handbag to her partner he did not share her love. So much so, he could not live with this particular handbag and demanded that the woman give it away.

For whatever reasons, the woman felt she had no choice but to give in to his demands. Thankfully, a couple who had been unable to even get into the handbag shop were immediately found to give the handbag a new home. They were delighted. They would look after the handbag from now on.*

But this was not the woman’s choice.

The End

Someone said recently that having a baby is becoming more and more like choosing a handbag. Only the healthiest, fittest and definitely NOT disabled will do. Even gender is now a deciding factor and not just in other cultures or countries but here in the UK.

The right to choose is upheld as the greatest victory for women’s rights. And yet so many women do not even have that choice open to them. We are kidding ourselves if we think they do.

*The last example in the story above I have drawn on from meeting a beautiful baby very recently who had been put up for adoption. The baby had a non-life threatening condition. The mother wanted to keep the baby, the father didn’t. The father won. Whose choice was that?

Choice MUST be informed…..that is something those of us in the Down’s syndrome community are fighting for with the introduction of the new prenatal test that is set to be rolled out across the UK. Yet what is it that we are actually choosing? A handbag? Or a baby. Disposable goods or a human life?

Choice (informed or otherwise) is not all it’s cracked up to be. Just ask the women who don’t have it – though they probably would be too afraid to admit it. Choice has its limitations but possibilities are endless.

Women deserve better than a trip to a retail park. And so do their young.


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Just do it

Just do it.

Or so we were told by a famous sports company back in the day. Whatever ‘it’ was.

If there’s one lesson I’ve learnt since having child with additional needs it’s that we don’t just do anything.

There’s the big stuff. Learning to sit, crawl, stand, walk, talk, and in Hazel’s case especially, learning to feed. We follow a different time-scale to most.

I have an early, painful memory of being handed Hazel’s little red book by a well -meaning nurse, only for her to return shortly afterwards and abruptly pull out the growth charts, replacing them with a special set – exclusively for children with Down’s syndrome.

“You won’t be needing those, you need these.”

My already fragile and hurt feelings were then compounded by a visit from the audiologist who was doing the rounds in the tiny NICU room we were in. I overheard her speech as she went from cot to cot, parent to parent, explaining the routine hearing test their babies would soon be having and how they would probably have nothing to worry about.

Then she came to me.

The tilt of her head did nothing to prepare me for her words. Delivered with a gentle brutality as to send me reeling.

“Of course, your baby might not pass this test”.

I wasn’t prepared. I wasn’t ready to be different.

Deep deep breaths.

Then there’s the smaller stuff that having a child with complex needs means…so that we don’t “just do it”…

Going to the park. Getting a babysitter and going out for an evening. We need a nurse for that.

Dropping in on friends or taking a day trip. The cinema, theatre or pantomime, zoos, farm parks, play areas. Even a simple picnic in the sunshine. Concerns about sensory issues and how Hazel will react.  Changing facilities (or lack of them); all these factors add up and quite honestly often put us off setting foot outside out home.

Hazel’s feeding equipment, routines and reactions make these things harder. Not impossible, but harder.

Even the things we do “do” take far more planning than we would like.

Going to Church, a trip round the supermarket, a children’s party, lunch with friends or family.

Sometimes it’s easier not to even attempt these things.

And, if I could change this, I would. In a flash. Of course I would. Who wouldn’t?

The truth is we can do many of these things, but the word “just” has to be firmly kicked into the long grass.

And that is absolutely ok.

When you “just do” something you may miss the complexities of how it is done. You may miss the joys of achieving the seemingly impossible. You may take it for granted.

But, when you finally “do it”, do the very thing that is so hard for you to do, however easy it might be for others, then the sense of achievement is often beyond measure. The appreciation for what might be a simple pleasure is second to none.

It’s in those moments that my heart sings.

Today held one such moment.

Hazel doesn’t eat. She is 100% tube fed.

We try. We try hard to help her to learn. To help her to want to eat. We play, we have fun with food. We get messy.

In school it’s called “Food is fun”.

But it is hard. So so hard.

 Hard when the walls, ceiling and anyone else sitting at the table is covered in whatever food Hazel has been “playing but not eating” with. Today it was orange. The colour, that is.

Pureed carrot and sweet potato. The clean-up took three times as long as the ‘meal’. It even reached the television which was quite a feat considering that’s in another room entirely.

Ah but surely this is quite usual for a child learning to eat, you may think. It’s a phase.

Yes.  It just doesn’t usually last four years and counting.

We clean up, with a heavy heart and an unspoken envy of families where children just pick up a spoon and eat; or who can go off out into the sun with a picnic whenever the mood takes them.

But not today.

Today my heart sang.

It sang at the smiles, laughter and joy Hazel exuded in her state of orangeyness. It sang as she giggled throughout lunchtime, happy to be with us at the table, enjoying the moment and being part of our family. And it sang because, in all the laughter, Hazel actually took two spoonfuls of the vegetable medley in her mouth!

Food really is fun!

So we will continue to embrace the mess. Savouring, relishing in and enjoying the milestones, or even just the stepping stones along the way.

Golden moments in time that are hard fought for.

One day we will picnic together, all four of us.

But I don’t really ever want to “just do” anything.

Downright Joy 2


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Turn Back The Clock

 

May is nearly upon us and, for me, this means one of my favourite things. Chelsea. Not the football club but the Flower show. Not that I’ve ever been. I’d love to, of course, but the demands of caring for a young family with additional needs prevents trips like that at the moment. One day I will go. One day.

For now, I’ll settle for a week or so of high definition images via the BBC and Mr Titchmarsh & Co.  Pure indulgence. A week of dreaming that my humble little back garden will somehow also be transformed into a panoply of perennials, a cornucopia of chrysanthemums and cordylines.

It never is.

I have dandelions growing in my conservatory roof.

I’ve yet to hear or see the humble dandelion get a mention at Chelsea. I’m not sure they’ve ever even heard of one.  After all, it’s a weed. Not wanted. No place for it. It would spoil the garden. Ruin it, even.

The dandelion is hated. People wage war against it, so much so we spend millions of pounds on products aimed at destroying it.

The dandelion will grow anywhere. Except where it has been eradicated.

Yet the dandelion is also loved. Childhood games spent telling the time with a dandelion clock. So perfectly formed, so intricate, so gentle and so beautiful to look at. Then, as the seeds are blown, delightfully, by a childish puffing of cheeks, they are carried effortlessly away on the breeze. Landing somehow, somewhere and there, they begin to make their own mark in the world. A world that doesn’t really want them. Wishes they weren’t there. Will do all in its power to eradicate them.

When do these same children learn to hate something they once cherished? When does fear replace this childlike acceptance?

I don’t know the answer but somewhere along the road it happens.

Fear.

And so it is with having a child who has an extra chromosome.

Fearful.

At least it was for me, and, given the statistics on how many terminations take place in the UK following a diagnosis of Down’s,  I think it is fairly reasonable to make the assumption that fear has a huge part to play for many who find themselves in the same position as I did.

I was afraid of the dandelion.

I was afraid of how it would spoil my garden. Take over. Damage. Ruin its perfect appearance. Make gardening harder.

Of course, my garden was never perfect, but I strived to make it so. I could not let the dandelion spoil this dream.

I was affronted by this ‘intruder’. I believed the lie. That the dandelion was harmful. That the dandelion was ugly. That the dandelion had no place in my garden.

But I could not eradicate it even though I was told it was possible. Easily arranged. For the best.

And, I am forever thankful, that my fears although real, were never strong enough to take hold of the situation. They were never allowed to go to the garden centre and buy the weed killer. Though, for a while, I am ashamed to admit, I envied those who could.

I began to love the dandelion. I began to cherish its beauty.

And, over time, the shame I had wrongly felt at having a garden with dandelions was replaced by a sense of awe and wonder at this beautiful plant. I discovered its beauty, its benefits and its immense joy. I love how it pops up anywhere, it’s deep vibrant yellow flower forcing its way through the most hardened of soils and singing in the sunlight. Enjoying life. Enjoying being there. Dandelion experts even tell of the health benefits it can bring. Who knew?!

The dandelion is not supposed to be here. Or so you would think.

I wish I could turn back the clock and re frame the dandelion.

It deserves it.

The dandelion makes me smile.

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Priceless

Four and a half years ago my doctor came to visit me after Hazel was born. We had not long come home from hospital, after nearly two months in NICU.

I was struggling to cope outside the safe, comforting environment that such places offer – particularly if you are there for any length of time as we were.

I loved her beyond words and yet I struggled to accept her condition. I had taken to my bed, exhausted; emotionally and physically. I was unable to cope with all that had happened. Unable to accept my baby girl had Down’s syndrome.

I did not want to join the club.

The Down’s family. That family with a kid with Down’s. The Down’s girl. Disabled. Special Needs. I imagined the conversations people would have about us.

Labelled. Given a badge. Lifetime membership. I didn’t ask to join. I certainly didn’t want to join.

“But,” he said.

“You will meet some amazing people and it will be an incredible journey”, he said.

How did he know? How could he possibly know that?

He knew.

And now I know it tooI am ashamed to think that I thought my life would be better off outside of this club.

This club is simply full of amazing people. People whose lives have also been turned upside down because of an extra chromosome or some other disability or condition. Like us, these people have had to face heartbreak and pain as they watch their child go through yet another operation or procedure. Many have had to do battle with an education system that puts no end of obstacles in their child’s way. They have fought tooth and nail to ensure their child be allowed to ‘thrive’ at school and not simply just ‘cope’.

These amazing people also include NICU Nurses, Respite Nurses, Community Nurses, Portage workers, Music therapists, Speech therapists, Physiotherapists, Occupational therapists, SENDCOs, Teachers, Teaching Assistants, Head Teachers, Surgeons, Doctors, Paediatricians and Practice Nurses…the list goes on. These are people who fight our corner and will go the extra mile every time for our children. They get it. They understand. They don’t say ‘computer says no.’ They have helped both my children, myself and my husband in immeasurable ways and I am eternally grateful to them. Then there are the amazing people in our circle of friends, neighbours, church, family. Truly amazing.

But most humbling of all, included in these amazing people (most of whom I would probably never have met if it weren’t for Trisomy 21) are mums and dads who have paid the highest price for their love and sadly, tragically, lost their little ones. Yet still they reach out to me and offer me their support. They have also shown me how to live, love and laugh through the toughest of challenges.

More recently, this club has included a family who have already shown, in just a few months, more determination, more resilience, more strength than I have had in five years. Week after week, month after month, they face uncertainty, separation and great anxiety as their baby girl battles on in NICU and now PICU. Countless operations already under her belt and her fight goes on.

They could have opted out so easily. And, at some point in the pregnancy, fairly early on, it was assumed they would. At least by some in the medical profession. After all, according to statistics, it’s a club no one wants to join – isn’t it?

Instead, they chose life.

They also chose difficulty, pain, heartbreak, anguish.

Ultimately they chose love.

And that’s what will get them through. They have gone beyond the pain and the difficulty and grasped hold of a love that is stronger than all the rubbish. A love that says their child has as much right to life as anyone else. A love that says they will never stop fighting for her, believing in her, delighting in her.

They are without question amongst the amazing people my GP told me I would meet.

I didn’t believe him, but he was so right.

And I am glad I joined this club and got to meet them all.

So thank you – to each and every one of you for being part of this incredible journey. You are all amazing. The world is by far a better place for all who are born with an extra chromosome and for people like you.

I love this quote from Archbishop Chaput:

“These children…..are not a burden; they’re a priceless gift to all of us. They’re a doorway to the real meaning of our humanity. Whatever suffering we endure to welcome, protect and ennoble these special children is worth it because they’re a pathway to real hope and real joy”

For Darla, 

keep fighting

keep wriggling

keep joy giving

Priceless x