Happy Valley

I never imagined I would have a child who wouldn’t want to hold my hand. A child who would spin wildly at any form of restraint, be it a hand, a leash attached at the wrist, or a backpack with reins. All little children like to hold their parent’s hand, don’t they?

They don’t.

My eldest daughter, Lucy, has always liked to hold my hand and still does at times, although she is getting older now. When she was younger, we used a wrist leash to train her to stay close on walks when she wasn’t holding hands, but she was always willing to hold hands to cross the street or when walking by the road.

Bethany: my wild child, my independent and determined child; has always resisted restraint of any kind. She loves to run free. She sees no danger. Her wrists and hands are very sensitive to a firm grip. Holding her tighter sends her into sensory overload, which can be very challenging to deal with when out and about with all eyes watching. We tried both the wrist leash and the backpack reins for a while, but they just sent her into a spinning, flapping, screeching frenzy.

Bethany is autistic. The things that come naturally for neurotypical children don’t necessarily come naturally for her. We must creatively find what works for her and be extremely patient. For the most part we use what I call “the shepherding technique.” That means we hover close to her (running if she runs). If I see danger I put my arms around her from behind and hold her close. I point out dangers such as moving vehicles. Where possible, we go on walks in large groups, with aunts, uncles, and cousins as Bethany is more motivated to walk and happier to cooperate in a group. We encourage hand holding for crossing roads and sometimes she will do so.

On Saturday we went for a family walk. It was just the four of us out in the countryside away from roads and traffic. We were hunting for bluebells. We didn’t find any as it was still too early for our location, but it was a fine bright day and an enjoyable walk. Bethany chose to hold my hand as we walked uphill through an area wooded with tall pine trees. The hill was steep, and Bethany struggled to carry on, but she held my hand for support and I encouraged her that soon it would not be so steep.

We carried on through a gate into a clear area where last year’s bracken had died back. The sun shone brightly and the birds made their music above us. The path gradually became less steep and then levelled off as we carried on. Still, she held my hand. We found “Happy Valley,” as the locals like to call it, and strolled along for a little while before stopping to give the girls a drink and a snack.

Only a year ago, we walked up the same hill to search for bluebells. A year ago, Bethany found the hill too steep. She cried. She stopped. She refused to walk. She wouldn’t hold hands. In the end, daddy carried her. He was stressed. She was stressed. We were all stressed. We were too late for the best of the bluebells last year and the walk was anything but relaxing.

This year, Bethany walked for the whole time, except when daddy lifted her over a particularly squelchy area of mud. This year, nobody cried. This year, nobody was stressed. We found “Happy Valley,” which was beautifully green but completely bereft of bluebells. We enjoyed the bright blue sky, the bird song, and the sound of the stream gushing along the valley below. It was idyllic. And this year, my heart was singing, because this year, Bethany voluntarily held my hand!

This Child of Mine

This child of mine,
Who does not speak except occasionally when she wishes,
And even then, her speech is basic or unclear,
Babble interspersed with occasional bursts of clarity,
She is non-verbal or pre-verbal or somewhere in-between.

This child of mine,
She is autistic and yet she is so much more,
She adores princesses and dresses, colour and laughter, and chocolate cake,
Family celebrations mean the world to her,
Although she gets overwhelmed and hides under the table.

This child of mine,
So full of energy, excitement, frantic frustration, and fiercely loyal love!
Running, climbing, splashing, and chasing the birds even into danger,
She is resolutely determined about her plans,
Which can be a good thing but also at times risky,
She sees only one way.

This child of mine,
Who adores music and loves to dance,
How is it possible that she can sing much more than she can speak?
Her melodies mostly pitch-perfect, although the words are blurred,
Decipherable only to those who know her well.
I think she will be a musician.

This child of mine,
I wonder, does she think in words that she can’t express?
Or does she just choose not to say them?
Does she see the world, her desires, needs, and dreams as pictures?
We have pictures for everything in our house,
Stuck to Velcro strips on the dining room wall,
Our picture exchange communication system.

This child of mine,
Fruit of my womb whom I have fed and cared for all the days of her life,
Watching and waiting for her delayed milestones,
I know her so well, and yet in many ways she is still a mystery to me,
Locked inside her mind,
Struggling to make sense of all that puzzles and overwhelms her.

This child of mine,
She is beginning to break open those locks,
I dare to hope and dream,
I prepare myself for disappointment,
Will she ever say mum?

Originally written by Jennifer Johnson, October 2023

Diagnosis vs Labels

The day Bethany was diagnosed with Autistic Spectrum Disorder was a day of great relief. It was a day of validation, to know that professionals saw her need. They saw our difficulties as a family, and they agreed with us. To hear those words after 18 months of being told not to worry and “she’ll catch up,” was strangely quite healing.

I already knew in my heart that Bethany was autistic. Her behaviour made it all too clear to me as her primary caregiver. My husband and I were frequently tearing our hair out, metaphorically speaking, as we tried to manage her challenging behaviour and lack of communication skills, especially while out and about in the community.

Yet for all the challenging aspects of Bethany’s Autism, there is also beauty in it. She is completely and utterly her own person, whether dressed as a princess or splashing in puddles with wild abandon. She doesn’t know a stranger and she will sing with all her heart (although you may not understand the words).

You may ask why we bothered to get a diagnosis if we already knew the truth in our hearts. Why label our child? Truth be told, our child would soon be labelled whether we got her diagnosed or not: Naughty, troublemaker, slow, dumb, stupid – these are all labels that are often given to undiagnosed children with special needs. If we remember that all behaviour is communication, and communication reveals a need, then we can see that oftentimes, the children who act up the most are just showing that they need help.

It was obvious to us that Bethany needed help, and as a family we were struggling to cope. We needed help. Getting a diagnosis would open the door to receiving support both for her and for us as parents. It would also provide a more positive label than the ones I previously mentioned.

Diagnosis provided me with opportunities to access training courses that would help us to understand our child and know how better to support her. Diagnosis paved the way for us getting her a Statement of SEN (Special Educational Needs) and ultimately a place in Special School. As a non-verbal child, Bethany would not cope in mainstream school. Since being in Special School, she has thrived. Her vocabulary is steadily increasing and whilst she cannot hold a proper conversation, she can make her needs known and understand more of what we say.

It has often been said that Autism is a reason, not an excuse. With her diagnosis, we have a reason for why Bethany is the way she is. Knowing that reason, we can make reasonable accommodations to support her and we can research strategies to help her to achieve her full potential in life.

To sum up, pursuing a diagnosis is about getting your child labelled correctly, and ultimately it is so you can access the appropriate support.

Why Are You Always on Your Phone?

My daughter’s words cut me to the heart. I never wanted to be the mum that was on her phone all the time, and I’m trying not to be, but at times it’s really hard.

“Come here, Lucy,” I said, putting my phone down and enveloping her with my arms. “I’m sorry if I’m on my phone too much. Can I explain why?”

I proceeded to tell her that when I’m on my phone I’m not just scrolling Facebook and YouTube videos. My phone is actually a multi-tasking tool. It is a mini-computer. Sometimes I use it for reading the news. Sometimes I’m actually internet banking. I also use my phone to do research and price comparisons when I’m planning a big purchase.

We live in an area where there aren’t many shops so I frequently have to order things online. I also blog on my phone and read articles online. I use my phone to listen to music and to send or receive emails including important ones relating to my children’s health or education.

I use my phone to stay in touch with friends and family and to take photos and videos of my family, capturing memories we can look back on together.

Before smart phones, people read the news in the newspaper. They did their banking at the bank. They did their writing on paper or at a Personal Computer. They did their shopping from catalogues or at the shops. Messages were left on answer-phones at the house or sent by “snail mail.” Photos were taken on proper cameras and mobile phones (when they first emerged) were only used for phonecalls and short texts.

So essentially I’m not just gaming or social networking when I’m on my phone. I’m actually doing stuff that has to get done at some time, somehow. But to the casual observer it looks like I’m just wasting time.

I need to do better at getting these things done when the kids are in school, but honestly, if they’re just watching kids TV shows, why shouldn’t I work on some of these admin things at the same time? I can also give cuddles while I work.

Next time you see a parent on the phone, don’t assume the worst. You really have no idea about the life admin they are trying to get done from their smartphone while managing a busy household in a modern age!

In Her Own Time

We arrived early for the playdate at our favourite park. Our friends hadn’t arrived yet. We planned to play, picnic, and walk in the woods nearby. When we lived in Ebbw Vale, we drove to this particular park frequently. It worked well for our family because it is completely fenced in, with public toilets, green space, and play equipment suitable for our girl’s ages. There is also access to the woods directly from the park.

I noticed the gate by the road was left open so I made sure to shut it as we went in. I didn’t want Bethany to bolt as she sometimes does,  especially with the danger of the road nearby. 

The children began to play on the equipment as I looked around. The grass was green after recent rain and the weather was perfect with blue sky and sunshine. It was one of the best days we had enjoyed all summer. I noticed a slim girl, about thirteen, with dark hair wander back over to the gate I had closed. She propped it open again. As a mother of a child with special needs I felt slightly annoyed. Why had she done that? Then I realised there was a lady going back and forth between her car and the litter bin, evidently clearing all the rubbish from the car. 

Bethany wandered over to the climbing frame and climbed the steps. I followed her over and realised that she was navigating how to get past an older girl who was laying down on the lower level of the climbing frame and playing with an excessive amount of Shopkins. She was stocky, with dark hair, and about eleven years old. It struck me as a strange place to lie down and play. It was a bit inconvenient although it didn’t seem to bother Bethany as she climbed over the girl.

At that point, the older girl came over and spoke to the girl who was lying down. They were clearly sisters. The older sister pleaded with the younger one. “Please come now. It’s time to go. Mummy is waiting.” There was something I recognised in the girl’s face and in her tone of voice. The weariness and frustration was written in her eyes. The younger girl ignored her sister and carried on playing.

It all made sense now. Autism was at play. I knew the dynamic. I could see the struggle in the older sister’s eyes. The younger sister seemed oblivious as she carried on playing.  She would come in her own time, only when she was ready. It was a dynamic I knew only too well.

The mother, had finally finished clearing rubbish from the car. She looked exhausted as she came over and successfully persuaded her younger daughter to come. The older girl gathered up her sister’s toys and followed them back to the car. 

The interactions hit me like a gut punch. I had been internally annoyed by the girl propping the gate open. I had been internally frustrated by the other girl lying down in Bethany’s way on the climbing frame. I didn’t initially realise what else was going on, and I only figured it out because we live that Autism life too.

Lying down in inconvenient places is something Bethany does frequently. I think she does it as a coping mechanism. It doesn’t matter where she is; she will lie down on the floor in everybody’s way. She has laid down on the floor in public toilets, motorway service stations, Burger King, and the entrance of supermarkets. Even if the floor is filthy she will still lie down. On these occasions Bethany will only get up and move when she is ready. Occasionally a distraction will work to get her moving, but normally I just have to wait until she is ready. 

The interaction at the park last summer was like a vision into the future. Bethany was five that day, and heavy to lift. At ten or eleven years old it will definitely be impossible for me to move her. And I will need passersby to be gracious and forgiving to us when we cause them an inconvenience. But will they be gracious and forgiving? Will they recognise when a disability is making things difficult for an individual or a family? Or will they just get irritated with us?

Not a Superpower


“We’re all a little bit autistic.”

“My nephew has autism and he’s a math whizz.”

“Autism is her superpower.”

“Your daughter is autistic. That must mean she’s extremely intelligent.”

These phrases and others like them are what people say when you tell them your child has Autism. The problem is, in our efforts to be positive about Autism, we unfortunately down-play the hard reality of what life is like for most people with Autism.

According to the National Autistic Society, Autism is “a lifelong developmental disability which affects how people communicate and interact with the world. More than one in 100 people are on the autism spectrum and there are around 700,000 autistic adults and children in the UK.”

Autism is a spectrum which affects different people in different ways. Some autistic people may be highly intelligent but also highly anxious and struggle socially. Others may be intellectually disabled. Some may be described as “a bit quirky” with interesting mannerisms and stims. Many autistic people find communication extremely challenging. They have trouble understanding social etiquette, and processing information (both verbal and sensory). Many are speech delayed and some may be described as primarily non-verbal. Autistic people are often delayed in toilet training and other areas of development.

The reality for most Autistic people is that they are not just a bit quirky. They are not just highly intelligent. Most people with Autism would not describe it as their superpower. Autism is a lifelong disability that means they struggle with things that come naturally to neuro-typical people. Learning to cope with this disability brings a lot of stress both to autistic individuals and to their families.

My daughter turned six last year. She is not yet toilet trained and shows little interest in learning to use the toilet. She is pre-verbal. Her vocabulary consists of less than one hundred single words and a few token phrases that she has learned to repeat (echolalia). She struggles to regulate her emotions when she is upset and as a result exhibits challenging behaviours. She gets overwhelmed by sensory information and/or by new situations. She has very little awareness of danger. Autism is definitely not her superpower.

On the plus side, Bethany knows what she wants, and she finds ways of communicating it. She is full of personality, and fiercely strong willed. She is extremely passionate about her interests and very affectionate most of the time.

My daughter is not atypical. The majority of people with Autism will struggle in similar ways. As they grow older, they will learn to manage their condition, but they will never grow out of it. Autism will always make life more challenging for them than it is for their neuro-typical peers.

So, lets dispense with the stereotypes. Next time someone tells you they are autistic, ask them how it affects them. Ask them if there’s anything you can do to make things easier for them. Seek to understand that autistic person as an individual and provide whatever support and accommodations you can. If it’s their parent talking, ask how things are going and how you can help, even if it’s just by being someone they can talk to when things get hard and overwhelming.

If we are honest, we all want to be understood. When we are understood, we feel less alone. And when we are not alone, we take courage.


Thoughts of Home

What is home exactly? This is a question I have been pondering recently. It is defined by the Cambridge Dictionary online as “the house, apartment, etc. where you live, especially with your family.” But is that all it is? The same dictionary goes on to say that home can also be used to describe “someone or something’s place of origin or where a person feels they belong.” This definition hits closer to the mark for me.

Home is so much more than a place. Home is a feeling. Home is “my people.” It is not just where one lives, where one lays one’s head, or where one stores all their stuff. Home is a place of safety. A place of emotional attachment. Someone can live in a house, with all their stuff, and even with their family, and still not feel safe. They are not “at home.” At home we are comfortable to be ourselves, to relax, to enjoy each other’s company, and to feel safe.

I have had several homes in my life. The first one I don’t remember because my parents moved when I was a baby. The next home, I consider my childhood home, where I was a toddler, infant, and younger junior. It was packed full of children and stuff. It wasn’t perfect. It was busy, and loud, and at times there were voices raised in anger. But it was home. I was with my family who loved me.

When I was about nine years old, we moved house again, to the house where my parents still live now. I don’t live there anymore but visiting them is like going home because I lived there for so much of my life, and because my parents are there. It is a place which is full of clutter, laughter, and occasional arguments. It is a place of love.

At the age of almost nineteen, I moved to the USA for four years of studying at university. I lived in the Halls of Residence for those four years, and although it sounds strange to say it, the place did start to feel like home. The halls lacked some of the comforts of home (privacy being one of them), but I built friendships there which became like family relationships. There were also friends living near to campus who opened their homes to me anytime I wanted to come over. They made me feel “at home,” allowing me to do laundry, share meals, and help myself to drinks etc.

There were also friend’s moms who “mothered” me, bringing me cakes and cookies to my room on campus, and taking me places, or generally just being a mother figure to talk to while living overseas. I really appreciated that. In fact, it got to the point after four years, that I felt so comfortable and “at home,” where I was, that I was apprehensive about returning “home” to my place of origin.

I lived back “at home” with my parents for seven more years before I was married and moved into a small maisonette with my husband. It was there that we got to know each other better and learned to feel “at home” with each other. It was to that home that we brought home our first daughter, Lucy. Having a baby in the maisonette made it feel even more like home. Maybe that is because to me, home is family.

During Lucy’s first nine months as a baby, we came to the realization that we couldn’t afford to grow our family living where we were. We needed to move away from my “home area” to a place where housing was more affordable. This meant leaving the area where my parents and two of my sisters lived with their husbands and children. It also meant leaving my “home church,” the church where I had been attending since I was a young teenager (apart from my time overseas). They were my friends and family, my support network. They were “home”.

We left my “home.” We moved to Wales which was “home” for my husband, although we were living in a completely different area of Wales. We had two houses there. Our first was a modern three-bedroom rental house on a main road. It was there that Lucy was weaned and took her first steps. It was there that we forged new friendships with a “new to us” church community. It was there that I discovered I was pregnant again.

We decided to buy a house before baby number two was born. We were in a hurry to move because of the pregnancy and bought a very spacious three-bedroom house in a good location, but which needed a fair amount of TLC. It was the kind of TLC that required money we didn’t have, so we spent five years making do and patching up things here and there. We did our best to make it home, and although we raised the girls through their infant years there, the area just didn’t feel like home to either of us. That house will always hold a special place in my heart though, because of all the memories we made there with our little girls. We like to visit those memories regularly on Facebook and Google Photos.

When we moved to our current house in Mid-Wales just over a year ago it was like coming home. We moved to a house on the same estate where my youngest sister lives with her husband and children. It is a town that feels like home because my grandparents lived here for most of my childhood. We were regular holiday-makers as children and teens visiting them here. Although they are deceased, the memories of my grandparents live on here. We have joined a church family where we feel at home and have made friends. Our house is cosy (small) but homey and we feel safe and comfortable here. We are home.

And yet, the older I get, the more I sense that these earthly homes are transitory. Even my current home will not feel the same as my children grow, change, and eventually move out.  As I read in Scripture, “here we have no lasting city, but we seek the city that is to come” (Hebrews 13:14 ESV). “But our citizenship is in heaven, and from it we await a Saviour, the Lord Jesus Christ” (Phillippians 3:20 ESV). As Christians we recognise that on earth, nothing is perfect anymore. Nothing is as it was when it was created. And “now (we) desire a better country, that is an heavenly: wherefore God is not ashamed to be called their God: for he hath prepared for them a city” (Hebrews 11:16 KJV).

As well as looking for our future eternal home, Christians are told to be at home in God. In John 15:4 Jesus said, “Abide in me.” To abide in is to make one’s abode in or to remain in. We are to be at home in God’s presence. We are to be at home in God. We are also to be at home with God’s people, in God’s house. “Blessed are they that dwell in thy house: They will be still praising thee” Psalm 84:4. I suppose that really it makes sense, in the context of believing in a Creator God, that we should feel at home with Him. The homes we have on this earth in this transitory life are simply foretastes of eternal home, eternal refuge, eternal safety, with and through the LORD God who made heaven and earth. May those foretastes feed our yearning for him!

What I needed

“Don’t worry. She’ll get there in the end.” A phrase I heard on repeat through Bethany’s early years. What did they mean by “there?” They meant normal speaking ability, like every other child. They meant all the normal milestones would be achieved, just at a slower developmental pace. But would she ever talk? Would she ever achieve those milestones? How could I not worry when progress seemed so non-existent?

“Don’t worry.” When I shared my concerns with family and friends I was always told not to worry. “Give it time.”

But a mother knows. She knows when her child is struggling and needs help. She knows the strain it puts on her family and her marriage. She knows the extent of the behavioural challenges and the seemingly insurmountable communication problems. She spends the late night hours googling Autism symptoms and ticking the boxes in her mind. She knows the diagnosis even before the Paediatrician gives it, because she is already living with the reality. Her child has challenges and the mother wants to know how to support her. Still people say, “Don’t worry.”

Please don’t say, “don’t worry.” When a mum comes to you with her deepest fears about her child’s developmental problems, don’t tell her not to worry. Don’t say her child will “get there in the end.” Instead, just be there for her, and listen. Ask her what she thinks is wrong. Ask her what her child’s symptoms are. Encourage her to trust her gut instinct and to seek medical advice. That’s what I needed people to tell me.

Unfortunately just hanging on and waiting for your child to “get there in the end” can be detrimental to long term outcomes. Early intervention and support for children with developmental disorders is vital. Early support and training for families with special needs children is just as important.

When you tell a mum (or dad) not to worry, you are telling them their concerns aren’t valid. You are minimising the problem. You make them feel misunderstood and isolated when they need compassion and support. It is not your intention to make them feel that way but unfortunately that is the effect.

Perhaps the better thing to say is, “why are you worried? I’m here to help.” That’s what I needed.

Your Birth Story

My dear Lucy,

It’s not long until you turn eight years old. I can hardly believe the years have passed so quickly. I sit down in my recliner and close my eyes to remember your story.

I remember being pregnant with you: the daily nausea, the afternoon headaches, the ultrasound appointment where I found out you had pericardial effusion. I remember the prayers offered up for you and the playful kicks that told me you were okay.

I remember the fortnightly trips to the foetal medicine unit, the bloating, the worry, and the every single Friday puking as I tried to hang on working part time towards the end of the pregnancy.

I remember being told to stop work and relax. I remember the final trip to the foetal medicine unit when my blood pressure rocketed and I had a killer headache. I thought I was just starving and sent your daddy to buy me a sandwich. The obstetrician was told and decided to keep me in and give me medicine for hypertension.

That evening she came to see me and said they had scheduled induction for the following day. I could hardly contain my excitement to meet you. I was to be induced on your late grandfather’s birthday. It seemed you were meant to be born on his birthday.

I couldn’t sleep that night. I was nursing a rotten cold, 38 weeks pregnant, and so excited for the induction to happen.

The next day came but we waited until 5pm to be transferred down to the labour and delivery ward for induction. That was a long day. The night was even longer. They connected me to a hormone drip but the contractions wouldn’t get going.

Every muscle in my body ached as I tried to get comfortable on that hard bed. I still had a tickly cough and a stuffy nose. The midwife diffused some eucalyptus oil to help me breathe. We listened to Ludivico Einaudi on repeat to help me relax.

The midwife broke my waters (or so she thought) but still contractions wouldn’t get going. More synthetic hormone was given but still progress was slow. We were shattered. It was late morning on the next day by this point.

The consultant decided to break my waters again, this time successfully. My contractions seemed to go from 20mph to 100mph metaphorically speaking. I was exhausted and scared at this point, unsure I would make it through delivery.

Suddenly the room filled with people. The monitor showed your heart rate was dropping. The obstetrician (a young lady with red hair just like yours) told me we needed to do a C-Section. I had always been terrified of going under the knife, but at that point I was just relieved.

I signed the paperwork while I was high on gas and air. That was bizarre. They rushed us into theatre and quickly prepared me for surgery. Daddy came in dressed in scrubs and sat beside me. A sheet blocked my view of my belly area.

A short while later they pulled you out of my womb. They exclaimed over your full head of red hair but rushed you away to the resusitaire because you had taken one breath, then stopped breathing and were turning blue.

“Is she okay? Is she okay?” John walked over to take a look. With his medical knowledge it must have been hard to take a back seat. Finally, after what felt like an eternity, they said you were breathing. What a relief!

I told John to go with you to the NICU while I was sent to recovery. Briefly, I stroked your little red head, and then I was wheeled away.

I was sent to a ward for recovery. All the other mums had their babies in arms. I knew you were safe but I still missed you. Eventually John came and updated me. You were ventilated but okay. We phoned family and shared our good news.

I sent John home to get some rest but unfortunately the hospital was short staffed. No one was available to take me to see you in NICU until twelve hours after your birth (2am). I put my hands into your incubator and stroked your hands and feet. I let you hear my voice. I sang to you while you held my finger with a fierce grip.

Later, after we had some rest, John and I came to see you again. Within two minutes of us walking into NICU your monitors started beeping and the numbers on the machines hooked up to you started dropping. The staff rushed around you and John took me out of the room. I was extremely scared.

A little later, once you were stabilised, the doctor spoke with us. The pericardial effusion had resolved but you had pulmonary hypertension, which they thought was caused by a heart valve failing to close after birth. The plan was to give you some drugs to help you to relax, in the hope that the heart valve would then close. The doctor was non-committal about whether it would work. He said you could be in NICU for weeks.

We went away and requested prayer from family and friends. We prayed ourselves. God answered positively. A few days later you were moved to the High Dependency Unit instead of NICU, and then a few days after that you were moved to our local hospital. Thankfully you have had no heart complications since!

Lucy, we love you. We love the many versions of you:

We loved the sleeping red headed newborn baby with the serious face.

We loved the bigger, bouncing baby with your giggles and mischievous smiles.

We loved the mess-making, into everything two year old.

We loved the shy, anxious toddler, who cried in new places and barely spoke.

We adored the three year old girl who suddenly started talking and then never stopped unless she was asleep!

We loved it when you said big words slightly wrong. Like the word “beaufital.”

We loved the pre-schooler who threw up when nervous and developed a sudden irrational fear of the sitcom, Dad’s Army.

We loved the confident girl who stepped out of nursery and somehow grew even more confident during the covid lockdown.

We love the girl who works so hard in school and also tries to be a friend to everyone.

We love the girl who likes to tell us jokes, even when they’re not funny.

We love the energetic girl who loves to play and sing and dance.

We love the girl who is a loving, kind, caring sister and always tries to help.

We love our Lucy. We are so very thankful that you survived your traumatic birth.

We are thankful for good medical care, which is a gift from God.

We are thankful for answered prayer.

‭1 Samuel‬ ‭1:27‬ ‭ESV‬
For this child I prayed, and the Lord has granted me my petition that I made to him.

https://bible.com/bible/59/1sa.1.27.ESV

A Better Person

I had it all planned out. Once we got married I was going to have a bunch of babies and raise them to be well-behaved, well-mannered, obedient children. I was determined I would be a good parent and I would raise them in the Christian faith. I even planned to home-educate these hypothetical children. My kids would hit all their milestones, work hard, and do well in school.

Once those children arrived I began to see that things aren’t as simple as I thought. Hypothetical children are not real children and sometimes life throws curve balls that change your plans and change you, growing you in ways that you could never have expected:

A complicated pregnancy. An emergency c-section. A baby in NICU. Hypertension. Sleeplessness. Health problems. Moving far away from your support network because of the cost of housing.

Then, another complicated pregnancy. Home purchase. Bi-lateral cleft lip and palate diagnosis of the baby in the womb. Another c-section. A baby in Special Care.

Adjusting to life with two children. Dealing with chronic pain. Putting your baby through two necessary surgeries and the subsequent challenging recoveries.

Financial challenges. House repairs. A husband working full time and studying for a new qualification.

A global Pandemic. Lockdown. Isolation. A close loved one in hospital. Special needs parenting.

Seeking help for Bethany from professionals. Persuing an Autism diagnosis. Advocacy. Disability. Special School.

Feeling frequently overwhelmed. Realising nothing was in my control. On the cusp of taking anti-depressants but changing my mind due to fear of side effects.

Determining to cling to the promises of God in Scripture.

And praying. Lots and lots of praying down on my knees in tears and deep piles of dirty laundry.

“Jesus, I need you. I can’t do this without you.”

And yet, in the midst of those struggles, there was also so much joy, love, and tenderness. There were so many funny moments. And a lot of growth.

Parenting is so much more than I thought it would be. Over time I have come to value connection with my kids over control. They are unique little people after all, with needs and wants and communication struggles. I can’t expect them to act like little adults.

I have learned to take the help that is offered. I have learned that I can’t do it all (including home-educating). I am learning to trust God with these precious gifts that we call Lucy and Bethany.

I am incredibly thankful for my family and all that has been provided for us. I am thankful for courses I’ve taken to help me to understand my autistic daughter better. I am thankful for advocates who have shared their stories and brought me hope and help in the process. I am thankful for all the intervention and help we have for Bethany.

Being a special needs parent has made me much less judgmental when I see a child who is struggling while out in the community. It has also made me examine the way I respond when my child is triggering me. The result has been happier, connected, peaceful relationships at home.

We have been through some dark, challenging times. But God has brought us through. He has answered prayers. He has provided joy and hope and laughter. He is making me into a better person.

‭Psalm‬ ‭61:1‭-‬3‬ ‭ESV‬
[1] Hear my cry, O God, listen to my prayer; [2] from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I, [3] for you have been my refuge, a strong tower against the enemy.

https://bible.com/bible/59/psa.61.1.ESV

Milestones

In less than a month my daughter, Bethany, who has Autistic Spectrum Disorder, will be six years old.

She used to live in her own little world and rarely said a word.

She attends a special school five days a week. She has a 50 minute chaperoned bus ride each way. She is very brave.

Bethany is currently in what is essentially the nursery class. The youngest child in her class is three and attends part time. Bethany was in the same class last year, and whilst she made tremendous progress, she was not ready to move up.

Other kids her age have been through Reception and are now in Year 1 (UK school system). They are reading and doing math sums. They are holding two way conversations and learning jokes. They are also toilet trained.

It stings sometimes, that she is not on a par with her peers, but I am thankful that Bethany is in a place which adapts to her needs so she can learn at her own pace.

At Bethany’s last birthday we finally got her to unwrap her own birthday present and blow out candles on the cake (she blew out mine a few days before).

Last Christmas she actually unwrapped her own presents (in previous years I had to unwrap them for her). She watched The Snowman and Katherine Jenkins: Christmas at the Royal Albert Hall on repeat.

Between January and April this year, Bethany started to thrive. Intensive regular interactions at school, at home, and with her cousins encouraged this growth. At Easter, she won a trophy for her progress. We were so proud of her.

During the summer term, Bethany started adding lots of words to her vocabulary. She is still not capable of carrying a conversation but most of the time she is able to communicate a need or a desire.

At times she will surprise us with a new word. Recently I was dozing in the recliner with Bethany on my lap. She leaned in and nuzzled me before saying, “are you awake?” She has used the word “awake” a few times now in the correct context. We have been amazed by this.

One day, not so long ago, her dad asked her what she wanted. She responded, “cake!” This was her first time verbally answering a question.

Bethany is also engaging in pretend play. Sometimes she will pretend to be asleep by lying down and snoring, before sitting up and saying, “awake.” She likes to get her ten little princesses jumping on the bed, and falling off one by one while we sing the song.

Bethany still adores dresses, princesses, Disney, and music. She is also very interested in playing with and taking lego apart but she is not quite so good at putting it back together again. She is also very determined which can be good and bad.

As a parent, you celebrate every baby step and every milestone. When those moments are delayed they are even sweeter when they finally happen.


We are genuinely thrilled with Bethany’s growth this year. It is beautiful to see her blossoming, especially as we have desired to see it for so long.

I’m really looking forward to hearing her say “mum” and “dad!”

True Love

On Christmas Day, 2021, my husband made me cry. Not bad or mad tears, but happy grateful tears. We have been blessed with a reasonably compatible relationship (thanks E-Harmony) and we rarely argue. The few times we do argue it is normally due to parenting styles and pressures related to special needs parenting.

Nevertheless, 2021 was a long year, and parenting during the Pandemic was exhausting. I was missing the romantic parts of new love: quiet dinner dates, outings without children in tow, movie nights that begin before 930 in the evening and don’t involve falling asleep halfway through.

We were preparing to put our house on the market and honestly I wasn’t expecting much for Christmas due to financial pressures. Anyway, when I unwrapped my gift, it was this framed painting (picture below). At that moment I started sobbing.

There’s a story behind this painting. My Nanna painted it for me when I was a teenager. It is of the lane where she and my Grandad lived, and where I walked many times with them during my visits.

My grandparents are no longer with us. The house and garden they called home had to be sold after they died. It was sold to a developer and on that plot of land there are now two large modern houses built. The large garden they laboured in and the workshop from which my Grandad ran his business are all gone. Apart from memories and photos, this painting represents all I have left of my grandparents.

This painting, hung in our maisonette when we got married, and then in the house we first rented in South Wales. When we bought our first home, I hung it up again. But the plaster in that house was very old, and one day the hook gave way. The frame broke and the glass smashed.

I was, naturally upset. We put the painting away in the cupboard and planned to re-frame it as soon as possible. But we were newborn and toddler parenting and life was busy. Then we found ourselves dealing with parenting during a pandemic and figuring out how to manage our undiagnosed autistic daughter.

So when I unwrapped this painting, re-framed for me, I was undone by the thoughtfulness of my husband. He knew how much the painting meant to me and got it re-framed.

His thoughtfulness is demonstrated in many other ways too, whether it be late night dish-washing, cooking dinner, or baking cake for a church function. He may not always think to give a compliment but he is certainly thoughtful in other ways.

Dining out and attending concerts can be very romantic and enjoyable things. Receiving flowers is always nice too. But true romance is much more than that. True romance is demonstrated in a thousand small thoughtful daily choices.

I write this to honour my thoughtful husband, John.

“Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things.”
1 Corinthians 13:4‭-‬7 ESV

The Wonder of Words

Every now and then Lucy will ask me questions about Bethany. Questions like, “Mummy, why doesn’t Bethany talk?” or “will Bethany ever talk?” I have to answer carefully. I used to say, “I don’t know”, because communication progress seemed so stagnant. These days, I say, “she does talk.” Bethany says some words. When or whether she will ever be able to manage a meaningful conversation I don’t know, but this year we have seen such a lot of progress.

Since we moved house last November, Bethany has regular interaction with her cousins, Aunt, and Uncle. She has also settled extremely well into her class at special school. Her attention and interactions have grown phenomenally. She has begun to repeat individual words here and there. I still haven’t heard the word “mama” since December 2020 but she has words that she says frequently and others that are occasional.

There is a song on YouTube about manners. It uses the words, “Here you are,” “Thank you,” “You’re welcome.” Bethany can now use the first two phrases in correct context when she wants to. Thank you sounds like “ank you,” but we know what she’s trying to say and it is wonderful to hear it.

Cat. Dog. Sheep. Pig. Car. Duck.

Words are wonderful aren’t they.

In June, Bethany hadn’t been feeling well. We knew because she was grouchy and lethargic and off her food. Then one morning she tugged at her ear, and spoke.

“Ear. Owie.”

Pure magic. My daughter was able to tell me what was wrong. We got her to the doctor and got the medicine she needed. Aren’t words wonderful?

One summer evening, the girls had eaten and left the table. John and I were eating dessert. Bethany came back to the table and sat down. My husband spoke; “Bethany, what do you want?”

“Cake.”

This was the first time Bethany has ever answered a question.

John fetched her some cake, although she had already had some chocolate for her dessert.

Yes, my child. You can have some cake. You can have all the cake.

It’s wonderful to hear a one year old say their first words. It’s wonderful to hear a two year old say their first words. It’s wonderful when a toddler starts to speak in sentences.

But when your child who is five years old, and who has five words in her vocabulary, finally starts to add to that vocabulary, and says those words in correct context and in answer to questions; that is extremely wonderful.

May we never overlook the wonder of words. Words are communication. Communication is a gift. A gift to be appreciated. A gift to thank God for.

“Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change.” James 1v17 (ESV)

A reason begets more questions

I looked down at my phone. I had received an appointment from Bethany’s Paediatrician. At our last appointment she had said she would transfer our child to a more local Paediatrician (we recently moved house). She said she probably wouldn’t see us again and yet here was another appointment to see her.

I felt a knot in the pit of my stomach. Our last action at that Paediatrician’s office was to take a blood sample for genetic testing. Receiving an appointment meant the results were back. Something was up.

We only referred Bethany for testing to make sure her Autism and her Cleft weren’t part of some kind of Syndrome. We wanted to make sure there was nothing else to be aware of.

Last week Bethany and I went to the appointment. It turns out that Bethany is missing part of Chromosome 16. This deletion of information is not associated with a cleft lip and palate but is strongly associated with Autism. In fact, it is more than likely the cause of her Autism.

This news reinforced to me that Autism is not and never will be something that Bethany will grow out of. It is in her DNA! It is as much the thing that makes her the beautiful, fun, determined person she is as it is the disorder that disables her.

So, in Bethany’s case we have a reason for Autism. A reason for her severe developmental delays, particularly in use of expressive language. Yet now we have more questions. Was this loss of genetic information a fluke at conception? Am I or is my husband a carrier? If so, what about Lucy? How might this also impact any potential grandchildren? Exactly how intellectually disabling will her autism prove to be?

An answer. And yet so many more questions. The realisation again of the challenges our daughter faces compared to many other children. Again, the weight of another diagnosis falling on the shoulders of parents who wish they could make life easier for their child. We wish we could bear the challenges for her, and yet we can’t.

So, what can we do? We take some deep breaths and determine again to be the best support we can be to her. We commit again to love her unconditionally. And we pray to God for strength, help, and wisdom. We trust that He has allowed her disability for a reason. We recognise that all human life is beautiful and sacred, despite the challenges of disabilities.

And Bethany is a very determined child. With the right support she can and will flourish. She will achieve her full potential. And as long as she is happy, healthy, and accomplishing appropriate goals for her, what more can we ask for?

https://medlineplus.gov/genetics/condition/16p112-deletion-syndrome/

The Wheels of Progress

It has been a crazy six months! Packing up the house began in September and we moved North to Mid Wales in November ’22. The girls both had to change school. So they were both adjusting to living in a new house, a new town, a new church, and getting to know new teachers and new friends.

Amazingly the transition went really well. It helped that we moved to the same town as my sister’s family and were familiar with the area and the housing estate where we now live. But it was still a lot of change to cope with, particularly for our youngest autistic daughter who coped superbly!

Since starting at their new schools, both girls have settled well. Lucy’s teacher gives me glowing reports and she has made some friends. Bethany is very settled and enjoying her new school.

Bethany is starting to speak a little more, still occasional random words (not sentences), and only when she feels like it. But it is progress. She is also paying more attention and seeking out interaction at times. At school she is learning about waiting, turn taking, sharing, and developing her ability to sit for set activities. They also do a lot of learning through play and movement activities to get the wriggles out.

I believe there are signs that Bethany is making some great developmental leaps. She is giving a lot more attention and eye contact and showing signs of understanding spoken language and some body language.

Bethany recently started to shake or nod her head to indicate yes and no. These may sound like small things. They are gestures that most of us pick up relatively easily, but for Bethany, this has taken a long time. She only started using her finger to point last summer and hasn’t until now been able to tell me yes or no other than fussing for a no when upset.

Last night, as usual, Bethany didn’t want me to touch her hair before bed. She shook her head and leaned back on the cushions so I couldn’t touch her head. I told her that I understood she doesn’t like me doing her hair at night. She’s too tired. I told her that I wouldn’t brush it, but I would like to put it up in bunches so it didn’t get too messy and tangled overnight. I said, if I didn’t put it up it would be very tangled in the morning and it would hurt to have it brushed. I asked her again to please let me put her hair up. After a minute of processing,  Bethany sat forward and let me put her hair up. To me that demonstrated her capability to understand language, to be reasoned with, and to be flexible. This is progress!

I noticed a slight smell from the PJs she was wearing. I told her the PJs were smelly and did she want me to change them? She shook her head. I asked if she was sure and held up some other PJs. She shook her head again. I asked if she wanted to stay in the smelly PJs and she nodded her head. I said okay and that I would wash them tomorrow.  Again, this demonstrated that although she is mainly non verbal, she could understand my questions and respond to them.

My final question, instead of checking her nappy as I normally do, I asked; “do you need a clean nappy?” I held one up as a visual clue to my question. Again she shook her head. I marvelled. My girl is understanding me. And she is saying yes and no through her gestures. This is such enormous progress and ought to be celebrated!

With all of this progress comes a lot of hope. For the past few years we have wondered at times whether Bethany would ever talk. I feel optimistic about that now due to the progress she is making. Of course, that is cautious optimism, because for Bethany it often seems that progress goes two steps forward, one step back. For now we are moving forward, and I am thankful.

Bethany will never out-grow her autism. There will always be struggles. But if we can support her to a point where she can achieve her full potential and be able to communicate her needs we will have done well.

Bethany will always be autistic, but that is not who she is. Autism is woven into her and the way she responds to life’s stimuli, but it isn’t who she is. She’s a beautiful, loving, independently minded girl who loves dresses, princesses, and the colour purple. She loves to play and run and puddle jump. She loves to pour water and splash in the bath. She loves music and video and parties and chocolate cake. She has dealt with a lot in nearly 5 1/2 years of life. But she is stronger for it and currently thriving. I’m excited to see what she will achieve next!

Two Words

Bethany.
Little Miss Independent.
Autistic and non speaking (for the most part) but noisy at times.
Bossy.
Knows what she likes and what she wants.
Four going on fourteen.

I caught her getting down from the table with her ice cream cone so I put her back on her seat.

I left the room and as I did I glanced over my shoulder to see her getting down again. I turned and told her to sit down with her ice cream.

A quiet voice replied, “Go way.”
My jaw dropped.
“Go way,” she repeated.
“Are you telling me to go away?” I said.
She got down from the table, walked over to the doorway, looked me straight in the eyes and said, “Go way.”

If this was any other child they would be in trouble for being sassy.

But these are some of her first words and I can’t help but be amused. I put her back in her seat and smiled inwardly.

Words. Two words together with context and understanding. Well done my child.

I bet her next word will be “no.”

A Very Special Young Carer

I often post about special needs parenting. I post about autism and our youngest, Bethany; and the difficulties her ASD causes for her. Let me talk to you a bit about our eldest daughter, Lucy today.

Lucy is my gorgeous, fun-loving, active, never stop talking, exuberant girl. She is highly intelligent, loves school, and is extremely sociable and friendly. She is kind and compassionate and very sensitive.

Lucy is also highly anxious. As a young toddler she would scream and cry if put into an unfamiliar situation. Sometimes she would even throw up if her routine was changed or she had to enter nursery via the office due to tardiness!

With the support of school staff and good communication, Lucy has learned to be more flexible and to go with the flow. And Bethany’s autism has challenged Lucy too and forced her to learn how to manage her anxiety.

Last summer, we had several difficult walks which resulted in Lucy having panic attacks due to Bethany’s inflexible behaviour out and about. Bethany wants to go her own route, not mum’s planned route, or she won’t cross the road, or lies down on the ground when we don’t go her desired way. One time she even laid down in the middle of a busy road! Bethany is also heavy and very strong so carrying her isn’t always an option.

It got to the point last summer when Lucy didn’t want to go out for walks with just me and Bethany in case Bethany was hard to manage. She still prefers to go out with daddy as well as mummy because of this. However, she is learning to be brave. She is learning to manage her anxiety so that it doesn’t spoil her opportunities for fun. She is learning to take deep breaths and to relax and be patient with Bethany, because Bethany does everything “in her own time.”

She is also learning ways of managing the challenging behaviours of Bethany. She’s the one to say “mummy give her a distraction to calm her down.” “What about the fidget bag mummy?” Or “use the phone/tablet.” Or sometimes she will completely diffuse a stormy situation by breaking out into one of Bethany’s favourite songs.

The other day the girls were running down the hill from school when Lucy accidentally bumped Bethany. Lucy and I looked at Bethany and we saw the angry reaction starting on her face. With a flash of brilliance Lucy started singing, “if you you’re happy and you know it clap your hands.” The situation was saved. Lucy didn’t get hit or bitten this time. She knew just the right thing to do to change Bethany’s mood.

This child, our 6 year old Lucy, is a young carer. She puts up with a lot. She is learning a lot about autism by being part of our family. And she loves her sister in spite of the challenging stuff. They play together. They dance together. They laugh together. They watch TV together. They cuddle together. And sometimes they fight together. And Bethany always wins if mummy or daddy don’t get there first.

We are so proud of Lucy. She manages all this stuff at home and still works really hard in school. We hear glowing reports. We wonder what the future holds for her. We know God has good plans!

#proudparents
#youngcarer
#autism

On Your Birthday Eve

Darling Bethany,

My thoughts are busy tonight as I remember the last four and a half years. I remember discovering I was pregnant with you, the joy of knowing we were adding to our little family, and that Lucy was to have a sibling. I remember the morning sickness, the afternoon headaches, the cheese and pickle cravings and the peanut butter toast. I was so happy and yet oblivious to the challenges which were to come.

At my 20 week anomaly scan I expected to find out your gender, but I had a nagging feeling that something else was going on. I was right. The ultrasound revealed you had a cleft lip and possibly cleft palate. A week or so later at a specialist scan we discovered your cleft lip was bi-lateral. The specialist advised the palate was very likely involved too. The next several weeks were full of apprehension, appointments, and excitement as your due date grew closer.

The obstetrician advised a c-section and I was so ready to hold you in my arms, as well as wanting to be home in time for Lucy’s birthday, so a c-section was scheduled.

The planned c-section was surreal (and so much better than an emergency c-section!) I walked down the corridor to theatre and laid down on the operating table. The staff were all cracking jokes as they prepped me for surgery, and I was cold. It was a “chilled out” experience in many ways. When you were born they did not hand you straight to me for skin to skin cuddles like they do in One Born Every Minute. I’m still mad about that. They said it was too cold (probably right) and took you to be wrapped up. They brought you back to me in recovery for a short cuddle, before taking you to Special Care. We were told they were concerned about your oxygen levels and you needed to be transferred to NICU in a different hospital.

Staff wheeled me up to Special Care in my bed to say goodbye to you. Then you were taken away. That night, in hospital recovering, the LORD gave me complete peace that He was in control. I was led to pray for your swift return to the same hospital as us. The next day, after a night on ventilation, you were returned to Special Care and us.

The next few days were a whirlwind of pumping breast milk, and going between the ward and special care to spend time with you and practice feeding you with the speciality feeding bottles that CLAPA had sent us. You were delivered on a Friday morning, and the following Wednesday we were allowed to take you home. We were all home in time for Lucy’s birthday.

Your first year of life saw the worst Winter Snow Storm (The Beast from the East) witnessed in Wales for many years. You had two major surgeries on your lip and your palate. The second op was an especially difficult recovery and involved a hospital re-admission due to dehydration. During that time God was our refuge and strength. He was a very present help to us during our time of trouble.

You were a lovely baby. Happy and easy for the the most part (except in the late evenings). You were curious and engaged and would sit on my lap to look at books with me. You made eye contact.

Somewhere in your second year of life, that all changed. You didn’t interact with us as much. You didn’t respond to your name. You wouldn’t point and you avoided eye contact. Speech was lacking. The only thing you would give any attention to was DVDs or Music. You played by yourself and not with others, except occasionally your sister.

The health visitor came to assess you and decided to refer you for global development delay. Then the global pandemic hit our shores and the nation went into lockdown. That Spring and Summer was hard. I was doing home learning with your sister and watching you retreat into your own little world. I was worried about you. I cried out to the Lord for help. I rang all the professionals I could to seek support and advice.

In August and September that support came. A trickle at first and then a flood. So many professionals got involved and there was a lot of advice to absorb. I already knew you had Autism, but we needed to get you diagnosed in order to get you the help you would need going forward.

It was getting harder to manage your behaviour and frustrating for you because you couldn’t communicate your needs. We were all struggling. My joint pain was flaring and there seemed to be no let up.

You were awarded an assisted place for two sessions a week at a playgroup to help you along. Then at Christmas 2020 another lockdown happened. You stopped saying “Mama.”

In February, you began regular nursery and also started another assisted place. I began to feel like I was no longer submerged. I was given things to try at home to help with communication and transitions.

Finally in June, the Autism diagnosis came. I was expecting it, but seeing it in writing was both heavy and relieving. We felt validated. We weren’t going mad. We weren’t bad parents. We were dealing with a disabled child. A beautiful, affectionate, and funny child who had extreme difficulty processing and understanding language. Our precious child who already had to deal with major surgeries as a baby faced the reality of learning to manage a lifelong disability.

Where are we now? You are four years old and currently only able to clearly say one word in the correct context: “Hug.” My darling child, we will give you all the hugs and help you need. Your life has brought us all challenges, but you have brought us great joy too. Your smiles, hugs and kisses are heart melting. Your enthusiasm and laughter are infectious. Your love of music and dancing is precious. Your skill at communicating your desire without speaking is clever. Your love of dresses and the colour purple is adorable. You will never know a stranger as you are so confident and independent. There is a danger in this, but I pray it will serve you well.

In short, my Bethany, we loved you before you were born. We loved when you were born, with your cute wide cleft smile. We loved you through two major surgeries. We loved you before autism was a thought in our heads. We loved you and laughed with you through a global pandemic. And we love you now as our precious autistic daughter. You are valued and loved. You have faced and will face challenges that other children never will. But you are a fighter. You are strong. And you have praying parents and an Almighty God to help you.

Verses:

“God is our refuge and strength, a very present help in trouble. Therefore we will not fear.” Psalm 46:1-2a

“Then Samuel took a stone and set it up… and called it’s name Ebenezer, saying, “Thus far the LORD has helped us.” 1 Samuel 7:12

“Hear my cry, O God; Attend to my prayer. From the end of the earth I will cry to You, When my heart is overwhelmed; Lead me to the rock that is higher than I.” Psalm 61:1-2

The Challenge of Chronic Illness

Back in September I had a long awaited Rheumatology appointment and after several years of experiencing symptoms, many of which have been progressively worsening, the Consultant diagnosed me with Sjogrens Syndrome.

Although SS primarily attacks the glands in the body it has other symptoms which can be very difficult to deal with. The worst symptoms for me have been persistent arthralgia in my hands, wrists, elbows, and knees, as well as overwhelming fatigue and GI issues. Coupled with the situation of a Pandemic and the challenge of raising young energetic children, you could say that 2020 has been challenging (understatement)!

Being diagnosed with a serious illness is never easy, but in some ways it brings a measure of relief. I am trying a medication which can take up to six months to work. It doesn’t seem to be helping me yet. My pain levels are always worse during wet or cold weather of which we have an abundance here in Wales. I am praying the medication will start to help me otherwise there are few options available apart from pain management, pacing, rest, and gentle exercise.

There is also the possibility of SS occurring alongside other conditions which I am trying not to worry about.

If this illness has taught me anything it is that I need Jesus to help me. Without Him I am without strength and without hope. My faith in Him has been an anchor for my soul and the comfort of His presence has brought me joy.

Suffering through longterm illness has also taught me thankfulness for the little things. A pain free day; praise God! A good night’s sleep; thank God. A gentle walk outside or playing and cuddles with the children. Pain medication and hot baths. A supportive and domesticated husband. Good food. Joint household visits with my sister’s family. Scripture reading. Prayer. Christian music. A text from a friend. These things are all blessings from God that help me to bear up under the strain of illness and pain.

I have occasional days where I feel absolutely fine and I could conquer the world but they are few and far between. At the moment my pain levels are very high. I am struggling to type this on my phone because of wrist and hand pain but I felt it was time to share and to ask friends who share my faith for their prayers.

Thanks be to God who is our refuge and strength, a very present help in trouble. The LORD is good, a stronghold in the day of trouble. He knows those who put their trust in Him.

Thanks for reading.

https://www.bssa.uk.net/

When The Work is Done

“You can rest when the work is done,” they said.

“That sounds like a good work ethic,” said my younger naive self.

Truth be told, my work is never done. I am a mum. Therefore I shall wisely rest when I can.

The work will never all be done.
Show yourself a little mercy and kindness. Take some rest if you need it.

The end.