A Valentine’s Message for my Husband

I have been blessed to marry my childhood sweetheart, my best friend.

We used to dream of our future – what it would be like, what jobs we would have, where we would travel and what our babies would be like.

Fast forward to now and we have 2 boys – one with SMA and one about to be diagnosed with autism.

I stay at home to look after our boys while my husband goes out to work to pay our bills.

It’s far from the life we had planned – we didn’t plan for our lives to revolve around hospitals and meltdowns but we did plan to be a team, to laugh together, to cry together to face challenges together.

Our boys have made us stronger and I love my husband for the daddy he’s become.

So here’s a valentines message for him:

I saw your face on diagnosis day; I saw your heart break and I saw your dreams crushed.

I saw your pain at the situation that couldn’t be fixed and I saw your fear at the uncertainty of the future.

But then I watched as you made different dreams, you adapted your plans and you changed your priorities.

I saw you researching, I saw you figuring it out and I watched you become a totally awesome daddy.

I see you going to work every day and going through the daily grind, I see you coming home tired, I see you doing all you can to provide for us.

I see you when you’d rather be chilling but instead you’re taking over physio routines or you’re doing meds so I can take a shower or you’re helping me sort dinner when an appointment has run late.

I see you driving from hospital to hospital to be with us when there are treatments or tests.

I see you run to the supermarket because I haven’t been able to get out that day.

I see you diffuse meltdowns, I see you type up social stories, I see you make cool down areas and I see you trying to find solutions.

I see you turn down nights out, I see you miss your team playing. I see you.

I see you laughing and having nonsense with our boys, I see your sense of pride when our boys reach a milestone, I see you celebrate when our boys achieve a miracle.

I am so grateful to you for all you do and please know I see you totally smashing this different kind of normal life.

This Valentine’s Day I see you and I love you for all of it.

Always Learning

I did not expect to be a parent of twins, let alone one with special needs.

Yet both, in their own ways, teach me more each day than I have ever learnt before.

They teach me how to love fiercely, without holding back and without conditions.

From the moment I realised I was pregnant I felt a strange sense of change in myself. That I had to be healthy and take care of not just myself, but these two tiny lives.

From ensuring what I ate was safe, to making sure I did not over-exert myself, I was taking care of my tiny babies before they were born, before they were even babies.

Those tiny balls of cells, the little blobs on the scan took up my heart without me realising it.

They teach me how to be strong and resilient, yet they also teach me that it is okay to show weakness and vulnerability.

Through the strength of coping and learning whilst going through physical and emotional changes and also preparing for a monumental change that will alter the entirety of your life- you quickly learn that a significant proportion of your life is no longer yours.

But not in a way that you want your ‘old life’ back.

In a way that you cannot imagine anything before it, that you get excited the first time your child smiles, and when you are away from them, getting a ‘break’ you cannot wait to be back with them and see them again.

Becoming a parent is terrifying, the responsibility you have for these tiny people, born far too soon is overwhelming for a variety of reasons.

The fact they depend solely on you, even before they are born is something that is difficult to comprehend before pregnancy.

You learn about a side of yourself that you have never known before.

A side that cares little for their own wellbeing as long as their children are safe.

Watching them grow and develop gives a whole new meaning to the phrase ‘learning something new every day’.

A baby/young child has such little control over their emotions and feelings that you learn patience and understanding on a whole new level.

You take your time to explain simple things; to comfort them whenever they need it; to hold them, whether it is 2 in the afternoon or 2 in the morning.

You are their world and they look to you for everything.

Yet they teach you that it is okay to not be okay.

Their emotions; their tears; their happiness and the way they understand the world shows you that you are allowed to have off days.

To have times where you need a little self-care and a break from everyday life.

That it is okay to want more from life, to have a different outlook on life and to be yourself.

The Heavy Lifting

As (foster) mama of six little people and sometimes more, my day is full of lifting.

Time and time again, I lift little bodies, bringing them close for comfort, play, safety, and nurture.

The heaviest of my physical lifting is woven into the care of my oldest children who use wheelchairs, require total care, and are becoming less little every day.

All day long, I lift them in and out of wheelchairs, in and out of carseats, into bed, out of bed, onto and off of the floor, into and out of the bathtub…the list goes on and on.

More times than I can count, I take a deep breath and gather my strength before filling my arms with their precious bodies.

In addition to lifting their bodies, I hoist their equipment.

I heave their wheelchairs into and out of the back of our big van.

I lift positioning seats, walkers, and medical equipment. The fronts of my legs are never without multiple bruises and I’ve twisted a joint or pulled a muscle more than once.

It is hard work—really hard work.

It is the most consistent and heaviest physical lifting I’ve done in my twenty-six years of life.

Observers around me often feel led to offer their opinion in regard to the physical aspect of my children’s care:

“Oh, you really need to get a wheelchair accessible van!” (I always want to ask if they are offering to pay for that…)

“Don’t you think you are too tiny to be lifting him/her?”

“You know they aren’t getting any smaller right?”

“I hope you know you are going to ruin your back.”

While I understand the concern, there is so much more to this heavy lifting than the simplicity of my body working to lift theirs.

In additional to the physical weight of my children’s care, daily, I lift the weight of making sure their hearts and souls are held close and cared for just as well as their bodies.

I worry about, pray over, and fight for their futures. I make endless phone calls, stand against negative people and doctors, research like crazy, and advocate like the mama grizzly God has created me to be.

I carry so much more than that which I lift physically. Of course I become tired.

Somedays, I do wonder what the future holds. Yes, there are days when I feel like I simply can’t do it. But more than anything, I have grown stronger than ever before.

Not only have my muscles grown stronger as I have cared for my children, but my love for them has grown exponentially more.

More than causing me to feel overwhelmed or exhausted, each lift fills my heart with gratitude that I am the one given the honor of caring for such priceless gems.

Each time I hold them close, whether for a hug, diaper change, or positioning transfer, I gaze into the most beautiful faces and feel the beating of a warrior’s heart beside my own.

When I am weary of fighting for the world to view my children with their full worth, their simplistic trust brings bravery rushing back to my mama bear roar.

Each time my muscles clench, straining to find the strength for one more lift on the hard days, the strength of these brave souls infuses into my own.

My strength is theirs and theirs is mine.

But the truth is that my strength has never been my own, nor will it ever be.

I depend on the strength of a mighty God who equips me to care for the children He has given me.

I also depend on their strength—the strength of children the world is quick to label as weak and cast aside—because tucked inside their hearts is strength greater than the largest army, given to them by a God who created them with world-changing purpose.

I carry an enormous amount of weight physically and mentally every day.

But each lift, each push, each roar is not done alone and is not done in vain.

How immensely blessed I am to be the heavy lifter for souls so precious and so much stronger than I can begin to comprehend.

Confessions of a Special Needs Parent

Parents of children with special needs experience many highs and lows along their parenting journey, but what are the secrets?

What never gets mentioned, what never gets talked about, what always gets hidden; what are the confessions of a special needs parent?

Well, it’s time for that to change, time shine a light on the secrets, time to say to other special needs parents “Yep, if this is you too then you’re not alone”.  So, here’s a few of mine…

We never saw it coming…

Never, in a million years, did we expect to have a disabled child.  Our first child, Phoebe, had developed as expected, hitting or exceeding all of her key developmental markers, crawling, walking and talking on target.

We fully anticipated our second child, James, to develop in the same way.

A normal full-term pregnancy had been followed by a slightly difficult but generally unalarming birth; all had seemed as expected.

Early concerns about James’ development were brushed aside by comments about girls developing faster than boys, it was nothing to worry about.

But as time passed, worry we did, and when James hit two and wasn’t talking or responding to his name, wasn’t giving us eye contact, was in his own private bubble, our worries strengthened into fears.

A few months of various tests and assessments later, we received the news that James, aged just 2½ years old, was now officially labelled as autistic with complex learning difficulties.

We really had no idea what that meant and were generally just cut loose to figure it all out for ourselves… we never saw it coming and we were in total shock.

I grieved for the lost future I had imagined for my child…

We all have dreams for our children; these are usually totally unrealistic and change over time as our children grow up and their skills and talents gradually develop with them.

When a child is diagnosed with special/additional needs or a disability, those dreams are shattered in an instance.

They might be our dreams, selfish dreams, but we don’t have time to process that they are lost…

They are snatched away in the amount of time it takes for someone to deliver a diagnosis to us.

I dreamed that James would open the batting for England in an Ashes test match, Lord know we need someone, or be the first person to set foot on the moon since Gene Cernan in 1972, the year an eight-year-old me was asked at school what I wanted to be when I grew up; “Astronaut” I said, without hesitation.

I had many years to come to terms with the fact that this would not be a dream I would realise, but seconds to come to terms with the fact that I wouldn’t live that dream out through James either.

The loss of those dreams for James were hard to bear, and the complete unknown of what the future now held meant dreaming new dreams was impossible.

We were dreamless, grieving, hurting.  Yes, it was selfish.

Yes, it was wrong to think that James without those dreams of ours was somehow ‘less’.  Wrong to think that an autistic child is in any way second best to any other child.

But in the rawness and pain we were experiencing, with nobody around us to help to inform and encourage us, it is easy to see how this could have happened.

Do we think this way now?  Of course not, we know differently now, but I totally understand parents that are in this place and would never judge them for being where we’ve been.

I prayed for my child to be “healed”…

Yep, this.  Of course I did… having received the diagnosis I beat on heavens gates to make God hear me.

“Why my child?” “Please, take this away from him!” “Why our family?” “Please, let this not be true!”, and in my deepest, darkest moments… “Why me?” “Why do I have a disabled child?”

Judge me if you like, but most if not all special needs parents have been in that dark place.

We are looking into a deep, dark tunnel and cannot see any light at the end of it.

We have nobody to help us know that it won’t always be like this, that we can still make a wonderful future for our child and ourselves, and even if we did we might not believe them.

Yes, it’s selfish, but who among us has never harboured selfish thoughts?  These get magnified in times of shock and distress, and not everyone is able to climb out of that pit.

Do I pray these prayers now?  Of course not…  I know so much more now, I understand James so much better now.

I celebrate his neuro-diversity instead of fearing it, I pray for James to have the future God has planned for him, not the one I might once have wanted for him.

Again, though, I totally understand parents who are still rattling heavens gates for a ‘cure’ for their child.

I for one am not going to judge them, but where I can I will get alongside them and help them to see what we’ve been privileged to see and learn through James. The future’s bright, just a little different.

There are two children, the ‘real’ one and the ‘virtual’ one…

There are two James’s… the ‘real’ one that we love, journey through life with, play with, go for trips out to the café with, laugh with, sit and watch TV with… when describing this James, we accentuate the positives, we share his successes, we celebrate his victories…

…and there is the ‘virtual’ one that has a Social Worker, a SALT (Speech And Language Therapist), several CAMHS (Child and Adolescent Mental Health Service) team, a Learning Development Officer, several school staff, various reference numbers, a mountain of paperwork and a separate bank account for his benefit payments.

When describing this James, we have to talk about the hard stuff, the things James can’t do at all, or only with help, the ‘icky’ stuff, his lack of awareness of danger, his inability to communicate effectively, his meltdowns, his seizures.

After filling in yet another 40-page form (and wishing, more than anything, that on page one there was a box that said “tick here if nothing has changed and then return the form”) we are left emotionally and mentally shredded.

We still love the ‘virtual’ James… of course we do, after all there is nothing we’ve said about him that is untrue, but we do need the counterpoint of the ‘real’ James to keep us going!

So, here’s a few of my confessions then… they say confession is good for the soul and there is something liberating about sharing these thoughts.

It is sobering to reflect on where we once were but encouraging to recognise where we are now, where James is now.

Any special needs parents reading this that are in that dark place, perhaps our journey can encourage you too and help you to hope for a better tomorrow.

Our children need us to believe in them, to be there for them, to love them, and to learn from them…

We never saw it coming… but we can help others who are experiencing this today to cope better.

We grieved for the lost future we thought we wanted for our child… but we see another, positive, future more clearly now…

We prayed for our child to be healed, but now we pray for our eyes to be opened to the future God has for him…

We recognise both the ‘real’ and the ‘virtual’ James’s and love them both.

The secrets are out… but then, as so many special needs parents share them, perhaps they weren’t so secret after all!

Somewhere

Somewhere there is a mom saying she is tired of picking up her child’s toys.

Somewhere else there’s a mom wishing with her entire being that her child was still on this earth to make incredible messes.

Somewhere there’s a mom saying her child’s nonstop questions are giving her a headache.

Somewhere else there’s a mother aching to hear her child’s voice. Even just one word.

Somewhere there’s a mother who can’t get a thing done with her toddler constantly at her feet.

Somewhere else there’s a mother unable to get anything accomplished because grief is holding her down.

Somewhere there’s a tired mother whose child woke up a little too early.

Somewhere else there’s an exhausted mother who hasn’t slept all night in years.

Somewhere there’s a mom deciding what outfits to wear for family pictures.

Somewhere else there is a mom making decisions for end of life care.

Somewhere there’s a mom tucking her child into bed at night.

Somewhere else a mom is holding onto her child so tightly as they wait for her to take her last breath.

Somewhere there’s a mom wishing for just 10 minutes alone.

Somewhere else there’s a mom begging to never ask for anything again if God would just take away her child’s pain.

Somewhere there’s a mom making well-child checkups.

Somewhere else there’s a mom making specialist, therapist, county, and school meeting appointments.

Somewhere there is a mom telling her children to get their shoes and coats on so they can run out the door.

Somewhere else there’s a mother toileting, changing, and carrying her non-ambulatory teenager out the door.

Somewhere there’s a mom quickly grabbing a new pair of shoes for her child at Target.

Somewhere else there’s a mom meeting with vendors to choose her child’s first wheelchair.

Somewhere there’s a mom in tears because parenting is hard.

Somewhere else there’s a mom in tears because parenting a child with special needs and medical complexities is hard.

Be grateful.

Be thankful.

Be kind.

Because you never know when you could end up somewhere else.

I Envy You

Hello, I’m a special needs parent and I envy all parents with children that don’t have additional needs.

Oh.. I just said that out loud… that feels like a big deal.

Am I going to get called a bad mum? Attention seeker?

Well right now I feel like I have to share it and get this weight off my shoulders.

I absolutely LOVE my children, inside and out they are the most wonderful little people and I feel incredible to be their mother. My children bring me absolute joy every day and my love for them could not be greater.

Which is why I feel pretty guilty even writing this blog.

One example is when talking about what others do in their free time.

“Oh we just had a lazy week, I attended a mother and toddler group and my little one ran round and loved it!” or “I’m back at work full time so when we are at home we just play and be silly”

I envy you.

I can’t go back to work because my son needs me full time, during the week we are at appointments and therapy, we do physio each and every day and even getting dressed and ready in the morning with medication, AFO’s, stretches and everything else that’s needed, it takes at least double the time.

Another reason is my knees hurt, my back hurts and my arms ache every single day.

When you have a child that can’t move around then YOU are their legs, it’s YOU that carries them and helps them get up and down.

You are told not to and are given advice on the “correct” way to do things but let’s be honest, we just want our children to be happy so if that means doing tasks that we are fully aware will not do our backs and knees any good then we go ahead and do it anyway!

I feel like I’m constantly in a daze.

It’s hard to explain but there’s always SO MUCH racing round in my mind “did I give him his 11am medication?” “Did we have an appointment today?” “Have we done enough physio?”

That when others are talking to me then often, I feel like I’m looking at them but not taking in a word that they are saying, how can I when there’s so much to try and remember each and every day!

And it can also get pretty lonely sometimes because you often don’t have time for anything else.

So yes, I’m admitting it.

I don’t want to change anything and I cope pretty well with what I have to but I really do envy those who don’t have to go through what us special needs parents have to.

Words

I was going to write a blog titled “Please don’t ask me what is wrong with my son”.

But as I thought about it and looked into the situation I encountered this morning, I realised that people aren’t always bad, they don’t set out to upset you, they may just be interested and/or generally care.

I found that I can make a difference by my response and that I shouldn’t get too caught up by words.

Today was a snow day. With school closed, me unable to go to work and a whole day ahead of us, I thought it would be a lovely opportunity to go on a walk!

I have recently moved house, in a new unfamiliar area, and still getting used to it.

I feel like I’m in a new country! I know.. you know.. I’m dramatic!

But reality is, I had lived in my previous village all my life. People knew me, they knew my family, they knew Zachariah.

I could go for walks and people would approach us, chat to Zachariah and ask how we were all doing. I could pop to my friends house.

I could pop down to my Church. Everything was familiar.

So when the snow caused chaos today, I missed being in my old house, I felt lonely and isolated.

The great news was my new friend and her son, a boy in Zachariah’s school were also wanting to get out and enjoy the snow. This lifted my mood as change doesn’t always need to be a bad thing.

We got all wrapped up and headed out.

I hadn’t got far when a friendly neighbour and his kids started a conversation with me.

I had always been too busy to say more than the polite greetings, however today I had time to get to know a neighbour a little more.

The beginning of our conversation went a little like this..

“Whats wrong with him?”

“Pardon”

“Whats wrong with him?

“Huh”?

Whats wrong with him”?

“Oh.. you mean what disabilities does my son have?”

“Yea”

Of course I had heard him the first time, but maybe didn’t want the use of words to be true.

As I never look at my son and talk about what is wrong with him.

There is nothing wrong with him. He has disabilities, but don’t we all? I kept my cool and took the opportunity to talk about Zachariah, focusing mainly on his cute face and infectious smile of course!

But I did explain that he has epilepsy, needed a wheelchair and a feeding tube.

The gentleman then went on to tell me how he understood and had been through many challenges and heartbreak himself.

He is a lovely man, and appears to have a huge heart, as he told me to never hesitate to ask for help, if ever we needed it.

But his use of words had put me off and had triggered me to have a defensive manner. Especially when he went on to say this..

“I knew something was bad over there as I always see lots of people coming in and out”.

(They would be professionals, and they would be our support network! I wouldn’t have said it was something bad).

I tried to explain that Zachariah lives a great life, he has struggles, but is always smiling and enjoying the things he loves like family, school, music and of course his walks! I tried to ignore the pity eyes, as I knew this gentleman meant well.

Sometimes we can get so caught up with words. Whether it be words to describe someone/something, words to create questions or words to start a conversation.

Words have to be learnt. So if we meet someone who may have a completely different vocabulary we are bound to find differences in the way we speak, however it doesn’t necessarily mean that we are right.

We all have preferences and different use of language which may differ to the next person.

The lesson I guess I have taken from this is to seek the heart first. It is then we can educate people on disabilities and speak back how we would prefer to be spoken to. With us all wanting different wording, and having our likes and dislikes from the dictionary, we cannot expect everyone to know exactly what to say.

I read an article recently about how people with Cancer would like to be spoken to, and how they wish to be addressed.

Each person had their own preference. Some like to be seen as a fighter, others don’t.

It is similar I guess with families who have disabilities, so I guess it can be difficult knowing how to talk to us.

I guess our mood/emotion that day may provoke more upset too!

If we’re grumpy from a bad night, there’s little chance that we will tolerate someone asking us a question we believe to be wrongly worded.

Needless to say I will continue to talk to my neighbour and hope that over time they will begin to pick up on my words and use them 🙂

If not I will continue to focus on the heart behind the words! 🙂

Much love,

Rochelle,

My Daily Miracle xx

What You Don’t See

My oldest son is about to be diagnosed with autism.

I guess I’ve always known he was different, a bit quirky and he’s always done some odd things but these things are about to be given an official name and that name is autism.

You might not always see it but it is there and so here’s a few things about my son that you don’t see:

You might see my son playing happily at the park but what you don’t see is that he’s going down the slide over and over again in a repetitive way, you don’t see the clock inside his head that he’s keeping his time with, you don’t see that he’s trying to beat his record every time.

You don’t see that the other children have tried to get him to join their game but actually he’s happier playing his own game and you don’t see me warning him every few minutes that we will be leaving the park soon because the transition will be difficult for him to handle.

You might come into my home and see my son watching a cartoon on his tablet but what you don’t see is that for the past few weeks he’s watched every season and every episode of that particular cartoon, you don’t see him quoting chunks of language from one of the characters…

You don’t see the big deal it is if I suggest we watch something else.

You might see my son playing with his trains like any other boy but what you don’t see is he has each of his trains placed strategically and if someone moves them it will cause chaos in his world.

You might see him looking at his globe of the world but what you don’t see is that he knows the temperatures in a lot of the countries he’s looking at and he knows how many hours it will take to fly there.

You might look through my kitchen window and catch a glimpse of me and my son at the dinner table but what you don’t see is the battle I’ve had to even get him to sit down because he is not interested in eating, you don’t see that he’s asked me for fish fingers for the 100th night in a row and you don’t see the melt down that will occur if some of that spaghetti bolognese spills onto his skin.

You might see my son sitting in the class, behaving well and carrying out his tasks but what you don’t see is the effort he’s putting in just to be able to get through the school day.

You don’t see him struggle to understand all these different conversations going on around him and you don’t see him taking every lesson very literal.

You might see my son come racing out of school at 3pm and running straight to me but what you don’t see are the hours we’ve spent going over social stories and the preparation we’ve gone through to get him to do this. You don’t see the burst of emotion he’s having at the school day finally being over.

You might see my son in the supermarket, you might think he’s being rude or naughty, you might even comment on it but what you don’t see is him struggling to process the lights, the noise, the busyness, you don’t see all this information flooding his brain so that he cannot cope with it.

You might not always see it, but I do.

The professionals have seen it and they’re about to tick boxes, add up score sheets and give my son an autism diagnosis.

You might then just see autism but I see a boy whose mind works in an incredible way, a boy who notices things others don’t, a boy who amazes me every day and a boy who fills my world with awesomeness!!