I’ve learnt over the years that ‘independence’ can mean different things to different people.

For my late father, it was being able to walk to the shop for his morning newspaper even as dementia ravaged his brain.

For my brother, it was moving away to University for the first time. And for me and mine, it means the stunningly beautiful, brand new cherry red Ford Tourneo Independence van that now sits outside our house.

Independence by name, independence by nature.

‘Cheery’ as she is nicknamed (yes, the van is definitely a ‘she’), in a silly nod to the character of Cheery the Dwarf from Terry Pratchets Discworld series, is to us a thing of beauty.

She is, firstly, enormous. She can seat five adults, one wheelchair, one assistance dog and a LOT of equipment.

She is a dream to drive but for us her true greatness comes in what she brings to our son.

Sam’s disabilities mean that he is safest travelling IN his wheelchair – the adaptations made to Cheery mean that Sam can do so safely.

The vast space within the van allows us to take his mobile hoist with us when we travel; in short, having this vehicle opens up our world as a family, and for Sam gives him a level of independence that he simply wouldn’t have otherwise.

Cheery is a Motability van and will be ours for the next 5 years, after which time she will be returned to the charity and we will be able to choose a new vehicle to suit Sam’s changing needs.

For many families, buying a nearly new wheelchair-adapted vehicle is a better option; wheelchair adapted vans, even when obtained through the Motability charity, are expensive.

For us however, going through the charity was the best option.

There is also the option to lease a nearly-new vehicle, giving even more families the opportunity to regain their freedom.

There simply aren’t enough words to say how precious that freedom actually is.

Finding the Village

There is a well-known African proverb which states: “It takes a village to raise a child.”

This simple phrase is full to the brim with such wisdom and truth.

Raising children is one of the most beautiful jobs in the world and is also one of the most difficult.

Without support, companionship, and encouragement from others parenthood can feel not only lonely, but impossibly challenging at times.

Recently, at the end of a long day of parenting our seven children—all ages 7 and under, 5 of whom have disabilities or severe medical conditions—I told my husband, “If someone could give us directions to this dang village that is supposed to help with raising children that would be great because sometimes I’m not even sure it exists!”

While I said this in a state of half-exasperation and half-jest, there was an undertone of longing and ache beneath my words.

I am a full-time mom, caregiver, nurse, and teacher to my children.

I am often very lonely. I often dream of a break. It can feel isolating and incredibly overwhelming sometimes.

While it may be easy to assume that when a child arrives the village automatically rises up around that child and parents, this unfortunately is not always the case.

I think many families face this harsh reality.

However, I think families of children who have disabilities and medical conditions—families like mine—are often met with this hard truth on a deeper, more raw level than most.

Earlier this month I was feeling quite village-less as we prepared for several weeks of extra appointments and hospital stays.

I ached for support and help. I prayed for a village to step up.

I also let go of some of my need for independence and shared with others what we were going through and asked for help.

After that, I made a point to remember again and again each way that our little village did show up and to be thankful.

Just when I needed some hope and reminding that we are not alone, here is what happened:

-I had family members respond to my request for meals during multiple hospital stays.

-We have a babysitter who loves our children and covered the childcare needs we have.

-We have a family who “adopted” us and loves us as their own and invites us—even with all our craziness—to their home for dinner twice a month.

-My little sister knew I was struggling and texted me that she was picking me up for dinner, drinks, and a girl’s night. I’ve dreamed of someone doing that for years. She always listens so well, no matter how discouraged, depressed, or irritable I am.

-One friend delivered some of my favorite cookies to my front porch.

-Another friend has offered to provide respite care for some of our children each month.

-Yet another friend texted me and offered to bring me dinner when I was in the hospital with a child last week.

-A friend and mentor left a care package for me on our porch.

As I noted each little way that my family was loved on and supported over the past few weeks, my heart was so encouraged.

Our village may not look the same as others on a daily basis or anything close to what I thought it would when I was childless dreaming of the future.

I am learning that I must speak up and ask more for help than is comfortable and also look a little harder to see those surrounding us.

But our village is there and it is enough.

If you are feeling village-less right now, be sure to tune into the small details and see who really is surrounding you—few as they may be.

Speak up and let others know how much you need love and support.

Most of all, don’t lose hope and keep asking and striving for a village to be built around you.

If you are someone who could be the village for a family who needs one, don’t hesitate to step up.

Don’t assume the help and support isn’t needed.

Ask for specific ways to help and brainstorm fun ways to serve up kindness and joy to a family needing encouragement.

It truly does take a village to raise a child.

I am the village. You are the village. We are the village—no GPS required.

Getting creative with the Holidays this Year

We’ve probably all come to the realization by now that the holidays this year are going to look different than they have in the past.

Different, however, doesn’t mean the holidays can’t be the joyful, fun events that make them something so many people look forward to.

I’ve got three tips to help you make the most of the holidays this year, no matter your circumstances.

First, start by naming what is important to you and your family.

We have done this in “normal” years (at the suggestion of one of my favorite podcasts, The Lazy Genius), and it’s incredibly helpful. The holidays can be a crazy time with lots of invitations and plans, so naming what is important to you long before the busy season begins can help you pick and choose how you’ll spend your limited time.

For us, one of our big priorities has been to have a lazy Christmas morning with just the four of us.

While that shouldn’t be a problem this particular year, having that priority identified long before we started talking with family about plans helped us know what to say no to so we could protect that time that was (and is) so important to us.

Once you’ve got your three (or so) priorities named, you can start to get creative about how to make those things happen. Maybe one of your priorities is a big white elephant exchange or seeing extended family.

When you know those are on your short list of priorities, you can start to think outside of the box as far as how to do them via Zoom, some creative outdoor gathering space, or some other way to create those things that mean the most to you.

Then, remember to keep it simple.

More than most times of year, the holidays tend to become over-the-top.

We try to do all-the-things and do them in the best, fanciest, most exciting ways. In any year, but especially a challenging year such as this, remember to keep it simple.

Outlining your priorities first is so helpful when it comes to keeping it simple, because it helps you define what you can (and should) say “no” to.

For some reason, we tend to say yes to every invitation and gift exchange and end up completely drained before the big day even rolls around.

Make sure, though, to keep your priorities simple too.

If you have a page of holiday priorities, you’re not going to be able to honor each of them.

Keep your priority list down to about three to avoid overwhelm and allow yourself the space to really enjoy them all.

Finally, set boundaries.

The holidays, more than any other time of year, tend to be a time when we feel like we have to be everything to everyone.

Use your holiday priorities to help you set boundaries. If something doesn’t fit into your priorities, don’t feel bad about saying no or changing the plan.

When we try to be everything to everyone, we actually end up ruining a lot of the fun for ourselves.

In my family, we also find it helpful to define our COVID-guidelines before we are asked.

For us, we stick to outdoor gatherings with almost everyone, and we have one family who is about as socially-distanced as we are that we agree to get together indoors with.

Since our guidelines are the same for everyone, we are able to set an objective boundary without hurting feelings and making people feel like we are leaving them out.

When you take some time before the holidays begin to do a little planning and groundwork to keep your focus on what’s important to you and your family, you’ll notice that your holidays feel much more free and fun.

And, isn’t that what it’s all about?

Covid-19, it’s time you DO ONE!!!

I realise Firefly is a big company, so has a far reaching reader base that may be all around the world.

So I should probably explain first that “do one” is not a good thing, and essentially means it should GO AWAY.

In my little part of the world, we have had one lockdown which went from the end of March to the start of July basically.

Since then, we’ve had the “rule of six” that restricted how many people could meet in your household and then a “circuit breaker” that extended the halloween school break by an extra week but was four weeks in total for hospitality etc.

We’re all still waiting for the powers that be to decide whether or not certain industries can reopen.

At the beginning, I remember standing outside our front door clapping and cheering for our NHS staff on the frontline as well as all the “private sector” healthcare workers who were risking their own and their family’s safety to ensure the most vulnerable members of our community were helped when needed.

How do things look now, eight months later? Horrific, truth be told.

I have seen some absolutely vile comments on BBC news social media pages as well as people’s own status updates and keyboard warriors in Facebook groups.

As someone who was medically shielding due to being “clinically vulnerable” myself thanks to an MS immunosuppressant therapy I’d taken, and also a mummy to a little boy with complex medical needs…all of these comments hurt.

Not only that, they make me so angry as a former nurse myself.

I’ve been speaking to a friend who used to be one of my fantastic healthcare support staff when I was a senior nurse before I had my triplets.

She has since trained to be a nurse and works in our regional ICU centre.

If anyone has seen the pics, the “uniform/PPE” (or armor, more like) that these staff are expected to wear is heavy, hot and incredibly uncomfortable.

She continues to look after the sickest people in the country and has seen such a mighty shift herself in public attitude towards these healthcare heroes.

I was genuinely horrified to hear that she was both verbally and physically assaulted when trying to stop someone entering ICU without a mask.

Really? Imagine rocking up to ICU with no mask on in the first place and then having the audacity to abuse the nurse who challenges you to ensure YOUR OWN SAFETY (as well as everyone else’s).

Let’s just have a little think here.

Do people believe that prior to the coronavirus global pandemic that ICU staff sat twiddling their thumbs all day?

No. They deal with road traffic accidents, traumas, catastrophic brain injuries, multi organ failure, out of hospital cardiac arrests, post surgical complications or where high intensity of support is needed, worsening ward patients etc.

Any one of us are just an accident/illness away from needing their services.

Where are we going to go if all the staff decide enough is enough and that there are easier jobs (which, by the way, there 100% are) and walk out?!

Our son has needed three operations since this pandemic began.

One was “routine” yet we went ahead because it was also essential for his long term health.

We were only allowed one parent with him and we had to stay on the day unit ward while he went round to theatre with the team.

This was the first time I’ve not been with him when he was going under general.

As traumatic as it was, we got through it and he was none the wiser since he got to flirt with all the amazing staff who distracted him so well that he didn’t even need to be sedated to relax him.

His two operations since then have been emergency neurosurgeries for blocked shunt.

Again, I won’t lie, it was incredibly difficult to not be allowed to go with him and hold his hand as he was sent off to sleep.

We’d to do that all over again less than 24hrs later.

Please trust me when I say, I am not sitting from a position of naivety in commenting about this.

Not only did I used to be a nurse, but I have a delicate medical condition myself and am mummy to an incredible little man with complex needs.

Our healthcare staff NEED our support now more than ever to battle this deadly virus.

I know that this affects the economy and on that point of view I am fairly underqualified so I know there will be people saying it should be put first for all the “healthy” people (ummm….Ableism muchly?!).

I understand how absolutely horrendous that has been for the smaller business owners as well as families relying on the income.

Covid doesn’t look to be going anywhere anytime soon and so the war wages on.

I absolutely beg you though to please remember…all of us are at the mercy of the healthcare system if covid hits us hard and since nobody knows what way it will affect individual people, we should all follow advice. 

You really don’t want to be the one having delayed treatment while they try to find you an ICU bed with a ventilator and a nurse trained to use it (which I’m told takes around 18months!).

So yes, government advice can be very unclear.

Common sense can also be lacking.

In saying all that, I don’t think we can go far wrong to please wash our hands well and often, wear a face covering, maintain social distancing, avoid crowded spaces where possible and maintain “bubbled” households.

If you can do all this we all have a hope of getting out of this alive and being able to tell future generations about the time the world pulled together against one of the biggest enemies yet!

Sitting in Wait

Sitting in a cheerful, brightly colored waiting room of the children’s radiology department, the hands on the clock move ever so slowly. 

A test that should take approximately two hours drags on into nearly five. 

On a fact-finding mission for answers regarding our daughter’s chronic GI issues, my husband and I can’t help but become a bit restless, as we sit in wait.

After the initial three trips into the X-ray room for fluoroscopic studies, completing one every thirty minutes, her anxiety seems to be conquered. 

The tears and fearful cries have all but vanished, thankfully.

With every medical appointment, panic sets in and we do our best to calm and soothe her. 

Trying to help your frightened child understand what is happening is heartbreaking.

I hate the fact that she has to endure so many tests, and this one is no picnic. 

Surrounded by loud noises, being forced to drink a terrible tasting solution, being confined to a tight space, and having strangers all around must be such a tremendous assault on her senses. 

I wish I could take her place.

As we wait between pictures, we’re worried, hungry, under-caffeinated, and anxious. 

Meanwhile, our gleeful girl is being such a trooper. 

She’s contently snuggling with her Dad, watching cartoons. 

She is happy and comfortably settled.  I am in awe of her incredible ability to take all things in stride. 

Watching her, as she seems perfectly at home now, I am at ease and can relax.

We wait.  Time continues to crawl by, hour by hour, as we are eager for the barium solution to do its thing. 

We take turns carrying our sweet girl back and forth to the little room for her X-rays. 

We’re hopeful the Radiologist can get some clear views of her GI system and provide us with a favorable report. 

As we are entertaining our girl and trying to creatively pass the time, another mom comes in. 

She is pushing an adorable little girl in a pink wheelchair.  She says “hello” and I reciprocate. 

I comment on the beautiful, sparkly bow in her daughter’s hair and she tells me that she loves my daughter’s shoes. 

We take notice of the beauty of each other’s child, and we exchange greetings to both brave girls. 

My daughter grins at the new friend across the room from her, in the wheelchair that closely resembles her own. 

The mom candidly shares with us that they have just received the best news. 

Her daughter can now start eating by mouth, at thirteen years old. 

She’s wearing a mask, but I see a great big smile, twinkling in her eyes. 

I am overjoyed for this mother and her child in their moment of celebration. 

We had never met before, yet we cheered and shared excitement together, as if we were old friends.

We went on to talk surgeries, therapies and diagnoses together, without any apprehension.

As our new waiting room neighbors prepare to leave, I hold the door for them and congratulate them again. 

There is a unique comradery that forms quickly between parents of children with complex medical needs. 

When we meet, unexplainably, there is a connection.  A mutual respect and understanding between strangers. 

Even though our stories are not identical, we empathize with one another’s victories and hardships in a way that most people couldn’t understand. 

The monotony of waiting had faded away and my heart was happy for their momentous win.

We received good news that day too.  A day of waiting gave way to wonderful results. 

Over the past ten years, we’ve spent a lot of time sitting in wait.  In more ways than one. 

There will be much more of that to come.  That is simply just a part of this life. 

When you receive answers that you desperately need, and cross paths with others that leave a bright spot on your day, every second of the wait is worth it.

Thanksgiving – Learning To Dance In The Rain

Over the years that I have written for Firefly you will know that my son James, Autistic with Learning Difficulties, Epilepsy and Anxiety Disorder, has had periods when he’s found it hard or even impossible to leave the house, one period lasting over a year, with all the disruption that causes around school, work, socialising etc.

Things remain quite unpredictable, but the journey, while impactful, continues to be deeply inspiring!

James sometimes not going into school means that one of us needs to stay at home with him as he is unsafe to be left alone.

Juggling work and home commitments is something many of us have had to get more used to this year, but it is still proving challenging and isn’t helped by the variety of lockdown regulations that seem to change daily!

So, where does all of this unpredictability leave us? How is it impacting us and in what ways are we responding to this positively? Well, here’s how!

We continue to learn, as we have learned all through James’ life so far, that impact and inspiration are two sides of the same coin.

Nietzsche was right when he said “That which does not kill us, makes us stronger” (never thought I’d be quoting Nietzsche in a blog post!), but I would add that in the case of additional needs parenting it makes us better parents too.

Even at the end of a torrid day, a day where things have all fallen apart, all the plans we made for it lie in tatters, and we’ve just about done with apologising to everyone, it is still possible to count our blessings.

Nobody died and we’re all in one piece; that might in itself be an achievement worth celebrating and giving thanks for some days!

A while ago I read ‘One Thousand Gifts’ by Ann Voskamp; an excellent book where she shares how she has found joy each day in the midst of so much that is difficult; to chronicle these gifts, simply writing two or three down a day in a book for a year.

She uses an ancient Greek word, eucharisteo, meaning to be grateful, to feel thankful, to give thanks, even in the storms of life.

I’ve completed my own journey of chronicling one thousand gifts; and as I look back over some of what I have written over those difficult days, weeks and months, I can see joy in the midst of so much that has been difficult… “Time spent doing jigsaw puzzles with James”, “Learning patience as I help James to cope with his day, and enjoying the sound of his laughter!”, “An easy transition to bed”…. and so on…

Through the impactful disruption of the last few months in particular, there have been inspirational moments that have brought joy to us all, and that have taught us much about ourselves.

James still has his struggles, but we are learning patience, deepening even further in our compassion and love, seeing into his world ever more clearly, and helping him to trust us even more.

Realising that if our day gets turned upside down it’s not the end of the world and there is still much to celebrate, “…enjoying the sound of his laughter!”

We do not journey alone, but with family and friends whose love and presence supports us; maybe you also have a faith, I know mine has sustained me through many storms.

We journey through the unpredictability, impact, and yes, the inspiration, never alone but always with those who care for us; with them joining us at the helm, helping us to navigate the way, or maybe just keeping the engine going!

So if, like us, you are journeying through unpredictable, difficult, challenging, impactful or disruptive times as an additional needs parent, seek out the inspiration, seek out the things to give thanks for… eucharisteo… and find joy, peace, inspiration and a drawing closer both to your child and to those who care for you, through them.

Then you can be better equipped to face the storm, and to learn to dance in the rain!

See you out there.

Great Expectations

I have really struggled with letting go of the image of the typical childhood I would provide for my daughter. 

As another year passes, we set aside space in her bedroom for more things appropriate for her needs.

Her pastel mermaid themed bedroom is filled with a mixture of stuffed animals and heavy medical equipment.

When you open her closet it has frilly dresses and syringes.

It all feels like a huge juxtaposition, and nowhere near what I anticipated my child’s room to be. 

We opted for a toddler floor bed, but I can feel the time coming near for needing a medical bed more suited to our situation.

It is getting harder and harder to place her down for bed as she grows.

Also, she needs a lot of the safety elements a medical bed can provide, as opposed to a typical bed.

We have procrastinated moving in this direction because honestly, having a typical toddler bed for the time being felt like a tiny slice of normalcy; if only for a fleeting moment. 

We are also in the process of getting her a wheelchair. Bittersweet is the only word I can say to describe the emotions I feel with this.

I am not the type to bury my head in the sand, so from the time she was a small baby I knew this would inevitably be a part of our lives.

It is still a tough pill to swallow. Something feels very finite about it.

Of course we always want to move forward, and we know a wheelchair is another stepping stone towards independence.

It is still a hard fact to come to terms with all the same. Something about it just makes the reality feel more concrete.

With all this being said I don’t want this to come across as if I am disappointed in my daughter in any way.

She is perfection in my eyes, which is why this all hurts so much more.

As a parent we want the very best for our children. We want them to have better and to live without struggle.

I would give anything to be able to fix this all for her. 

I have to learn to be able to differentiate between the image of a “happy childhood” and the tools I will need in order for my child to live a more fulfilled life.

It’s hard not to be affected by the stark contrast of our family and those around us, but it is a reality I must make peace with.

The cards are stacked against us, and I have to give her all the tools she needs to thrive. 

Lessons I’ve Learned from My Kids

I’ve learned a lot in the past 14 years of being a Mom.

Raising children with multiple medical and behavioral issues forces you to take stock of your life and realize what really matters.

I’ve lost count of the lessons that my kids have taught me along the way, but these are some of the biggest ones:

Unconditional love. To love unconditionally means accepting our children entirely and without restrictions or stipulations.

Many parents of children with special needs go through a grieving process upon learning of their child’s diagnosis- I know I did.

After the initial shock wore off, there was never a doubt in my mind that I would accept everything about my child, no matter how challenging.

Unconditional love also goes both ways.

For both of my kids with special needs, I am their person.

No matter how much of a hot mess I am, no matter how grumpy and exhausted I can be, I’m the one they come to find when they need something, whether it be a snack or a hug.

I secretly love this, even though there are times when they will literally search the whole house for me- when my husband is 3 feet away from them and perfectly willing and capable of tending to their needs.

My kids have taught me perseverance.

They have to try twice as hard to accomplish many things that come so easily to their peers.

It’s often a challenging, frustrating road that comes with its share of bumps.

I’ve learned that sometimes it’s ok to back off and that they will do things in their own time and their own way, and they have rarely proved me wrong. 

I’ve also learned the art of perseverance in fighting tooth and nail for their rights for over a decade.

Speaking of rights, one of the most important things my kids have taught me is to speak up and advocate.

I learned early on that I was their voice, and if I didn’t speak up, no one else would.

Becoming an advocate for them was equal parts difficult and effortless.

It was difficult because I am an introvert and used to avoid confrontation at all costs.

It’s effortless because not standing up for my babies was never an option.

When I became a parent, I never envisioned that my kids would teach me more than I could ever hope to teach them.

And there’s still a lifetime of lessons to learn.

Out of our comfort zone

Sitting through a live rugby match I thought would be out of the question for Isla. But not only did she do it…she actually enjoyed it too!

We only had to come inside 10 minutes before the end as the rain had set in.

Luckily she was still keen to watch the end of the game inside.

If it wasn’t for my husband Gareth booking tickets without my knowledge I would never had agreed.

A rugby arena with lots of people, noise and stimulation is pretty hard to navigate when you have sensory processing issues.

I must admit I have got into the habit of not challenging Isla (or myself) to experience new things and opt for easier options.

I knew this meant a lot for Gareth that we all could go to the rugby together.

So I decided we needed to give it our best shot.

I also had a back up plan that we could leave if it got too much as luckily our hotel was not far from the arena.

First thing we had to do was upgrade her ear muffs. Isla had preferred a softer variety but had come to her own conclusion that they weren’t too good at blocking out noise.

We were also fortunate that Isla had attended “holiday club” and had spent some time with her ex teacher who knows her well.

Isla must have mentioned that she wasn’t looking forward to the rugby because it was boring.

The teacher mentioned to me she had been trying to tell Isla that we do lots of things that she liked so maybe she needed to give it a try.

This was a huge help in helping Isla adapt to the idea.

Finally there was some bribery in the form of hot chips!

To be honest I probably found it more stressful than Isla.

Waiting for her to react to all the people, worrying when the rain started falling and when the cheering started.

Isla did look a bit worried at first but then visibly relaxed and by the end was cheering with everyone else.

It has become so easy to take the safe option.

This was a bit of a wake up call for me that we have to keep challenging Isla and get her to experience new things.

I am sure some outings will not be as successful but it is always better to give it a go than not try at all.