Rocked to the Core: A Tale of Prematurity

Prematurity changed me.

As in, I will never be the same after experiencing the NICU and having a child born so small. Quinn and Sawyer came charging into this world at 27 weeks. I hadn’t even hit my “dreaded” third trimester.

After their arrival, we had to wait a week to hold them.

A week to hold the baby you’ve been praying for your entire life. Even at that one week mark we couldn’t hold them together and my husband and I had to flip a coin on who we would hold first.

I held my son Sawyer and it was the sweetest moment of my life. I was overcome with tears and that is when it hit me, I am a mom. I made this two pound human I am holding.

I was so worried I would break him but at the same time I felt strong.

I felt like I could do anything.

A friend hopped on a bus on her lunch hour just to come and document our first time holding our children, for that I will forever be grateful.

When I look back at pictures it’s hard for me to imagine the kids so small. My son’s head fit in the palm of my hand. His hand was as big as my thumb.

We didn’t plan for prematurity, no one does. We didn’t plan for the dozens of complications we had either.

Sawyer and Quinn both ended up with one of the scariest preemie problem you can have, the one they don’t tell you about until you have it.

Necrotizing enterocolitis, an infection of the gut that slowly eats away the small intestines. When they begin to show signs they immediately go onto antibiotics and doctors are put on high alert.

It has a very low survival rate and is extremely hard for these tiny babies to fight.

Sawyer and Quinn had a long hard road fighting this awful infection. Sawyer got so ill that we said our goodbyes as he headed into his first surgery at under three pounds and two weeks old.

When we found out he made it through the surgery we were elated but the surgeon told us “What is left of his gut didn’t look good, I don’t know if he will recover.” They left him open until the next day, OPEN.

It was a terrifying thing to hear about your child let alone see. Thankfully he did recover after months of complications.

Quinn battled for a full month before they did surgery and by then she was so sick that she lost a lot of her blood during surgery and had to undergo multiple transfusions.

They actually set up a transfusion to give her blood as they were doing surgery.

Although we went through something terrible and traumatic, we survived.

Our children beat the odds and survived something that many don’t. In fact, we had babies that did not make it right next to us.

I will never forget holding my son a little tighter when the family next to me came in crying and said their daughter had NEC. She did not survive.

When we came to see our kids the next day, she was gone, a hole left in our nursery. We had become friends with the family and hearing their daughter didn’t make it, was heart wrenching, devastating, name the word and that’s how we felt.

Another friend of ours lost their baby unexpectedly when he was on the road to recovery with NEC. It happened just down the hall from us on the eve of Quinn’s discharge.

I hugged my friend while she sobbed on my shoulder and all I could think was “I am so blessed.” I felt guilty that my kids had survived and hers did not. These are the things that happen in the NICU that no one talks about.

These are the things that stick with you for life and rock you to the core.

Sawyer and Quinn now are two years old. Although we still have our battles we are mostly healthy.

Our experience in the NICU changed me for life. I was diagnosed with PTSD just before the kids were discharged from he NICU but more than that, I am a different person.

I no longer sweat all the small stuff. I have more compassion than I ever did for people and what they may be going through. I remember that life is short and can sometimes be even shorter so soak up every moment.

Finally, when I am about to lose it because my daughter is throwing a tantrum or my son is grumpy, I remind myself that they could not be here at all.

I give myself a second to breathe and remember that they are here, they are strong, they are throwing tantrums because it’s normal.

Our life certainly isn’t normal. Each of our children have been diagnosed with Cerebral Palsy.

We have many therapies a week and check ins with doctors every couple months.

We try to navigate the past, present and future all at once predicting what therapies or adaptations we have needed in the past, will need, and need now.

I have decided that if we can give hope or inspiration to anyone, then it was all worth it. Having a premature baby made me into a better person, even if it wasn’t how we planned our life to go.

When Every Night is a Night In

As I ran my son his bath, at six o’clock as I always do, he put his arm around me and I took this photo.

He has no idea how I would have quite liked to have been somewhere else at that moment, just for once.

A small part of me wanted to be an adult and have freedom. Nothing hugely special just a parent council meeting at his sister’s school.

Evening things are impossible for me though and I am not alone.

Parenting a child, or children, with addiction needs comes with sacrifices. For many that means a lifestyle where every night is a night in.

Baby sitters and child minders don’t happen in my world. The weight of responsibility that comes with having two children with autism who rely on a steadfast routine that involves me doing everything can be heavy some nights, but they are worth it.

It’s just not easy to explain this to others. I think many feel I use my children’s disabilities as an excuse for not going to things at night but that isn’t the case at all.

I would love to have the freedom to attend events, meetings, get togethers and family parties but it isn’t possible.

When I say every night is a night in I mean EVERY night.

I have tried to change things. I went out a few weeks ago to a Halloween party at my daughter’s school with her. I was out for one and a half hours and I was just five minutes from home.

My son had a visual schedule, was left with someone who completed understood and was capable of meeting his needs but yet the whole evening was a disaster.

He cried, he lashed out, he caused damage because he was unable to understand where I was. I once nipped out to the local supermarket for bread and my daughter had a panic attack so bad she was struggling to breathe.

My children are unable to cope when I go out so it is better for everyone that I stay home.

There may come a day when that changes but until then their needs come before my wants.

So, at 6pm the bath gets run. It’s what we do here. Prior to that it’s dinner and homework. It’s the house of routine because that’s what works.

My children are not controlling me: they have anxiety, autism, and in my son’s case epilepsy. My son trusts me to bathe him, give him medication and read his bedtime story (the same one every night).

It’s a privilege and honour to be the one doing that for him.

My daughter wants to talk to me about her worries and read Enid Blyton together. They need that consistency and reassurance every night.

This is much more than mundane everyday life, this is precious years of bonding that I will never be able to get back again.

So, while part of me misses that adult time, those PTA meetings, family get togethers, Christmas parties, birthday drinks and so forth I know that I made the right choice by saying no.

I care about other people but I have two disabled children who need me.

Every night is a night in and I don’t know when or if that will ever change. I know I may be letting other people down and that’s hard. But it’s harder still to see my children struggle.

They are worth it.

That hug makes up for every sacrifice I’ll ever need to make.

Special Needs Parents and Energy Reserves

I recently read an article that claimed that people that have cerebral palsy use up to three times more energy than their able-bodied peers. I’ve witnessed it with Amy many times.

I’ve seen the concentration and focus required for her to control her arm and reach out to press a button on a toy. It’s bittersweet because on one hand it’s a huge achievement and it makes me so proud.

There was a time when we didn’t think she would be able to do this.

But there’s the side of me that feels grief for the fact things have to be so challenging for her and that she needs so much extra brain power and energy to achieve things that most people take for granted.

It got me thinking about energy as a concept and how all of us use their energy. I don’t have any statistics for it, but I can say through first-hand experience… that being a special needs parent requires more energy than you could ever think possible.

I reflected on my days as a full-time worker; when I didn’t have a child yet. I used to struggle to get up in the morning, and I struggled to keep on top of day to day chores and running of the house. Back then I said silly things like “I can sleep when I’m dead… now is for living”… now I’d sell my left arm for a nap. (Only half kidding)

However now… I would love to have so little to do!

I didn’t know just how easy we had it. It’s all relative I know… but if I focus on just one aspect of our day… getting ready for school.

It’s a nonstop chaotic couple of hours 5 days a week. I find myself having to get up earlier and earlier to try and get the jobs done before transport arrive at our house. every night I try and prepare as much as I can… I pre-draw her morning meds, I lay out her clothes for the day, and I try to make sure her various bags are properly stocked.

There are days where I simply can’t because I’m too exhausted… but the knock-on effect of this is an even more frantic scramble in the morning.

It’s a pretty intense time each morning… every time I think we are ready I realise… did I pack spare bibs… did I wash out the suction machine… Oh hell I haven’t brushed her hair yet… and where are her splints?! And so on.

8am transport arrive and I perform my best impression of super mum; I even try to throw on some foundation to hide the eye bags and put my scarecrowesque hair into a bobble to feign looking presentable.

I smile and say goodbye then collapse back into bed for a few minutes. I soon ping back up and commence the bedroom fumigation… I won’t go into detail… but daily bedding changes are a thing in our house.

The house is now littered with syringes, dirty nappies and bedding, and quite often the dishes from the night before.

When all of the jobs are eventually done, and errands completed… I sit back in our sofa and feel the true ache that comes with a very physically demanding job. Some nights we don’t get a lot of sleep. Amy sometimes has nights where she is quite unsettled; and on the nights where she is settled the feeding pump likes to sing the song of their people.

If I didn’t know any better, I’d suspect someone of casting a curse up on us where we are guaranteed as little sleep possible! Amy has recently been unwell and clearing herself of a cough and cold can take several weeks.

You can be fast asleep in bed and then you hear it… the cough and splutter. You lie there wondering if she’s okay but also too tired to get up.

Then she goes quiet. Is she ok?

The noise worries you, but so does the silence. Sometimes we go in and check she’s okay, other times you just know and you go back to sleep. This broken sleep is something I think an able-bodied child of her age would have outgrown (unless of course they too have the cough!) and I wonder – will it always be like this?

It validates to me our need for those respite nights where we can rest and catch up on sleep.

But I wonder – where do we get our energy reserves from? Because every day is the same… the lifting, repositioning, the standing in awkward positions to fasten wheelchair straps… the twisting your back putting her pyjamas on and fighting against her thrashing movements.

Sadly, a lot of the time I turn to convenience food and junk food.

You’d expect me to be in the best physical shape of my life, and I know if I didn’t eat so much rubbish I’d be like an athlete! However fresh food can be expensive and take time to prepare… I think the extra energy comes from me cutting corners in other areas such as my own health. I am working on it, but right now I am not sure I am in the right headspace to confront my many issues.

Right now is the battle to get through to bed time with everyone safe and happy, and everything in relative order. Caffeine of course is my other saviour. Not great for the anxiety prone I know… but it’s that boost I need throughout the day and it spurs me on. There are worse habits I tell myself (as I justify my tenfold terrible habits!)

There’s no two ways about it. Parenting is hard work. It’s rewarding, it’s amazing, there is nothing like it.

Special needs parenting requires extra patience, extra washing, extra most things. There is always something that needs to be done, or something you wish you did more of (speech and language stuff, physio, researching feed options etc).

It’s never-ending.

Last week we went on a day out shopping. We walked 6km, which when pushing a chair around and lifting up and down constantly to get through doorways, over kerbs and steps can be tiring

It adds an extra strain when you are trying to carry a shopping basket, push the chair, pick up dropped toys, and pick out your purchases. Sometimes it’s like you need several extra arms! My friend and I joked the other day that when our children aren’t with us, we don’t know what to do with our arms! It’s so true.

The next day after shopping, my whole body ached.

We had a fantastic day and made some lovely memories; but it did make the next day harder on my arms and back. Ibuprofen is definitely my friend. The thing is, I’m not really complaining, more just saying it how it is.

Because before all of this I had no idea what people went through with their additional needs children. You really do need a huge reserve of energy but the truth is we’ll do it and do it and even when we are at full capacity… we will somehow summon the strength from somewhere to carry on for them. Because that’s our world, and we will do anything for our kids.

What do you do for extra energy? What do you do to wind down?

Recently I went to bed listening to a guided meditation. I still woke up feeling groggy and exhausted, but I did feel more positive having internalised a lot of the messages from the video (i.e. “you are good enough”)

So, this is one way I feel I can top up some of my reserves, by investing in myself emotionally during a time where I would be lay doing nothing anyway. This way I don’t have to find extra time.

Your emotional wellbeing and your physical wellbeing seem to be intrinsically linked. I believe if you work on one, then the other will improve too. I hope to increase my physical exercise, and make better food choices, but like with everything in ours and our children’s lives… it’s one step at a time, it’s wait and see, it’s be thankful for the positives.

Epilepsy Awareness Month

November is Epilepsy Awareness Month. Epilepsy is a big part of our family life. I have 3 children, Florence who is 5 months old, a step daughter who is 5 and Ethan who is 8.

Ethan our eldest has epilepsy. Not just any epilepsy, hard to control epilepsy.

Ethan had his first seizure when he was just four days old. It was the most terrifying moment of my life. I can still picture every second of those 3 minutes. Holding my tiny baby and him jerking and staring at me will haunt me forever. This was just the start of our 8-year journey so far.

Epilepsy controls our life. It never stops for our poor son. We were told by our epilepsy nurse that “children with epilepsy are always in a state of epilepsy.

They are either having a seizure, building up to a seizure or recovering from a seizure”. We have found this to be so true!

We don’t ever know when a seizure will appear and we can never predict where we will be when it happens.

Most of the time people won’t even recognise Ethan is having a seizure as he doesn’t present with his seizures like you would think.

Ethan’s seizures present in the following ways; increased heart rate with gasping for air and arm jerking, staring into space (absent seizure), crying with increased heart rate and eye flickers.

When you know Ethan well you can tell when he’s having a seizure.

We constantly have to keep an eye on him as it’s important to help get the seizure under control as soon as possible. Ethan has a VNS is place which helps with seizure control and we also use midazolam which is a rescue med.

As a family we spend lots of time in hospital. It’s like a day out for us! Dakota even got dressed up as wonder woman! We are very used to this but each time is still hard and emotionally draining on us all.

Never knowing whether we will leave the hospital with Ethan is a thought that never leaves you.

We don’t let epilepsy stop our lives though even though it controls it! We still have many adventures with Ethan, although some of those plans often have to be cancelled or changed due to a seizure. We live life fully as we know just how precious having Ethan is.

Unfortunately, one seizure could take him and I do not want to live with any regrets that we didn’t give him a life full of love and fun.


How To Treat a Child with Special Needs

If you don’t have a child with special needs you may wonder how to treat them, how to act around them, what to say and what not to say.

There are thousands of children with additional needs, each so different too, even if a child has the same diagnosis as another, there really is no 2 the same.

So, when asking the question, “how to treat a child with special needs” you may think the answer will be a difficult one as no 2 disabilities are the same.

But it’s simple. It really is.

Watch their sibling. Just sit back and watch and you’ll have your answer.

What do you see? Do you see them acting any different as to how they would act around another child with no additional needs?

The quick answer is no. They don’t treat them any different, and that’s your answer right there. If you’re teaching your children about disabilities please don’t tell them they need to be any different around people that have them!

I have 2 children, my oldest has no disabilities and my youngest has quadriplegic cerebral palsy, there is just a year between them and they are the best of friends.

My oldest treats her younger brother no different from how she treats her friends.

She is aware there is a lot of things he is unable to do but that doesn’t stop her playing with him the way she would if he didn’t have any disabilities! The only thing a bit different is that she will sometimes have to shout over to me “Mum! Wheel him over this way now please, we are going to play something else!”

I’m sometimes even guilty of thinking “oh, he can’t do that so we will play something else” if we are playing with something I think he won’t be able to do but his big sister never, ever doubts his abilities and she’ll just help him if he needs it, or leave him to it and let him figure it out!

I genuinely don’t think he would be able to do a lot of what he can do now if it wasn’t for her, she has taught him so much without even realising it herself!

So, when I meet another child with disabilities, no matter what they are, I don’t treat them any different than how I would if I was meeting any other child and I know my children wouldn’t either.

It’s important to let them ask questions too.

I had an experience once where I overheard a child ask his mum “why is that boy in a pram he’s not a baby?” And the mum told her son off and very quickly walked away from us.

It upset me because it’s then teaching that boy not to speak with anyone that’s a bit different (that’s how I saw it at the time anyway!) whereas, if she said to him “why don’t you go ask!” Then I would have been more than happy to answer any questions and I know my son would have loved to said hello!

Don’t shy away from disabilities and don’t be afraid to ask questions. We are ALL different but we should ALL be treated the same.

Recovering from Broken Heart Syndrome

Did you know that you can die from a broken heart? In some extreme cases, broken heart syndrome can lead to severe, short-term heart muscle failure*. But in most cases it is treatable and recovery is possible within weeks.

What defines a broken heart?

Is it the loss of a loved one? A break up, or some other traumatic shock? The long, slow grieving process of a child’s sickness or neurological diagnosis? The wearing down of the self over time; always putting others before you?

What about separation from a partner because the relationship can’t handle the stress of raising a child with a disability, or you just weren’t compatible enough to weather this life together any longer.

What about the separation from a child due to time in the hospital?

What about endless appointments and siblings to take care of too? What about just forgetting you are important too? Broken heart syndrome presents as a sudden, sharp pain in the chest, right in the heart.

Shortness of breath following an extreme emotional or physical event. Women are more likely than men to experience this kind of pain, which is a reaction to the surge of stress hormones in the body. We have all heard how stress can make you sick, wear you down.

It can also kill you.

It’s an extreme thought, I know. But, even while not common in broken heart syndrome, it does happen. Our mental health can and does affect our physical health. And as parents, we often take care of ourselves last. As a parent of a child with a disability, it is even more likely that we are the last to visit the doctor.

Last week, I asked my husband to take me to the ER for these very symptoms. They had been happening for about four days. A pain so severe and constant, that I didn’t know what to do to make it go away.

It was not the heavy weight of a panic attack (I’d had one of those the week prior), but it also wasn’t accompanied by heart attack symptoms such as arm or upper back pain, or light-headedness/fainting.

I had no risk factors; being a vegetarian, a healthy weight, and moderately active. The ER doctor did not believe there was anything wrong with my heart. But my EKG (electrocardiograph) was abnormal, so a stress test was scheduled for the following week.

No one seemed interested that I was taking anti-anxiety medication or that I was under a lot of stress.

So I finally asked the ER doctor if one could have a heart attack because of a stressful event and he mentioned broken heart syndrome. A newly-defined diagnosis, not much is known about it, but it does exist.

When I returned the following week for a stress test, my EKG flagged me to do a stress echo, where ultrasound pictures would be taken before, during, and after a grueling ‘uphill’ bike ride.

What it showed was that my left ventricle was much wider than normal and my heart was pumping much slower whileresting than it should be. I was asked if I had a problem with alcohol (some binge drinking in college, over 20 years ago, was not likely the cause) or had been treated for cancer (no).

The doctor also said it was possible that a virus has caused an insult on the heart and I would eventually recover from it. Another echo was scheduled for a year out to see if my numbers had changed. I was diagnosed with borderline cardiomyopathy. I had a broken heart.

It was true, 2018 has not been kind to me. It has been a struggle.

I started taking antidepressants in April. I had anxiety attacks. I started seeing a psychotherapist. I finally started taking care of myself. I began to think about who I was again, outside of a wife, mother and caregiver.

But it was going to take time and I kept getting dealt punches and knocked down faster than I could climb out. It all caught up to me and my heart broke. I stared at the ultrasound pictures on the screen. My empty, slow-beating left ventricle. I saw it move faster and grow smaller with exercise.

A resting heartbeat should be a fast as what my heartbeat was when I exercising. Would exercise help? No, it just had to heal. Reducing alcohol intake would relieve some strain. Say goodbye to that glass of wine while preparing dinner…

What broke my heart doesn’t matter. It certainly was a collection of things.

What matters is our mental health and how it can affect our physical health. And as a parent of a child with a disability we are often struggling to balance dozens of appointments at a time, add a sibling recovering from a tonsillectomy, and some fairly big marital stresses and BOOM!

A broken heart. I’m only 41. I have to be here to take care of my kids. So I need to take care of me. I have to learn to say no when I feel overwhelmed. I have to learn to stand up for myself when something happens that is not healthy for me.

I have to take breaks. Take walks. Sleep more. Let go.

Letting go is big and it can mean so many things. But once set in motion, the weight lifts and the pain disappears and I feel lighter again. I start to remember who I was before all of the things I am now. I start to rediscover myself and explore new interests. I start to be me again. My heart begins to heal.


Non-Verbal Communication

When pregnant, as a mother you get excited for your baby coming. You imagine what life will be like.

You cannot wait to see what they will look like and what their personality will be like.

Somebody always says “I wonder if their first word will be mum or dad” and you joke along with them about how after 9 months of carrying them you hope it’s mum.

You never for one minute imagine that they will never be able to speak. Nobody prepares you for life not to work out that way.

Does every child not meet the milestones that all these new parent apps talk about? All babies should have said their first word by the age of 9 months, right?

My son Ryan is non-verbal.

He has never spoke a word and I have never had the pleasure of hearing him shout mum or dad. Ryan has cerebral palsy – that means that he finds it hard to coordinate the muscles around his mouth and tongue, enough to produce speech.

As his mum, I am very realistic of what kind of lifestyle is ahead of Ryan and I have come to terms with the fact he won’t be able to speak. That being said, if I had the chance to give him the opportunity of anything it would be the ability to talk.

I would want nothing more than to say to him I love him and to hear his precious voice say it back.

At the beginning I was terrified at how we would communicate with Ryan.

How would I ever know what he wants? What if I got what he was trying to say wrong? How would he be able to make his needs shown when he was not with me or his dad?

3 years on and that fear does not exist. Ryan has no control over hand movements so Makaton sign language was not an option for him to use as a way of communicating back to us.

Ryan now communicates through facial expressions, body language and he vocalises with shouting. There is nothing more heart-warming than walking into a room saying “HI” to Ryan and for him to give you the biggest smile back.

That is Ryan’s way of letting you know he is pleased to see you.

Ryan has the cheekiest personality. After he has an appointment with one of his therapists, he smiles and laughs when they get their stuff together and that is his way of letting them know he is happy to see them leave.

When Ryan is not feeling right or well in himself his body tone goes high and rigid and he begins to get frustrated that indicates that he is upset or uncomfortable.

This sometimes can be frustrating as a parent as he doesn’t have the ability like a child who can speak to tell what is exactly wrong. This means we go through the process of making sure he is clean and dry, repositioning him or changing whatever activity he is doing at the time.

We don’t always get what he needs correct straight away but throughout the years we learn with experience.

At times it has been hard and I had felt as though I had lost faith when I found out that Ryan wouldn’t be able to speak or communicate with us.

But now, seeing how far my little boy has come along and how he tries to let us know how he feels and what he wants through other means of communication, I am proud of the little fighter he has become.

A Place of Relative Calm

I am writing today from a rare place of relative calm. I am sat at the computer, with candles on, lamp on, fire light on… and most importantly the web cam so I can see that she is safe and happy in bed fast asleep.

The whir of the dryer echoes throughout the house…. I like that a chore is being done without my presence. The dog is scuttling about knowing that daddy is due home soon…and the guinea pigs happily chomping on their kale.

Right now, everyone is happy.

This is what it’s all about. I can breathe a sigh of relief. Phil will be home any moment… and instead of complaining about my many woes, I can just relax and say “we got through it, and it was good”.

This last few weeks has been too chaotic to put into words. Basically, just day to day health issues with Amy. I don’t know if it’s some sort of sleep deprived form of delirium, or just that my new medication is doing its job. But considering the circumstances and physical demands of current daily life… I am doing very well.

As I am sure many of you will relate, a cold is very often not “just” a cold with our children.

Amy’s cough is weak and ineffective and clearing the mucous (sorry if you’re easily grossed out this is not the paragraph for you! I am desensitised by way of exposure!!) is very difficult. More often than not, it finds its way onto her chest and results in a chest infection.

For the last week Phil and I have been up constantly through the night suctioning her as her sats dip into the low 80s (blood oxygen levels, which are meant to be above 92). Eventually after a lot of wrestling and intervention we clear the blockage and her sats go back up.

It has been emotionally and physically exhausting.

She has been too poorly for school and her antibiotics have meant her not tolerating feeds. We are on day 2 of rehydration granules on 24-hour pump feeds and her stomach is showing no signs of giving up on its mission to ruin the washing machine!

It has taken a toll on me definitely… but today, probably through exhaustion… I have managed to accept it for what it is. I am grateful that this time we have avoided the trip to hospital, the IVs, the impossible cannulations, the oxygen and so on.

I’ve even put forward a case to have nebs at home to help loosen the “goo”. Instead of feeling sorry for myself like I have in the past I’ve somehow managed to plough through it all.

Amy has been an absolute star

I always say there is “angry ill” and “happy ill” with Amy. She has been “happy ill” meaning she is quite happy to pop to the shops for supplies, she is happy to sit and watch videos whilst I catch up with the washing and prepare meds.

I have found myself inspired by her resilience and co-operation. Clearly her stomach must feel terrible, and that rattle on her upper airway must be a real nuisance.

The lack of feeds and slight dehydration has meant overly cold extremities… she giggles and smiles as I rub her hands and feet to make them warm.

She laughs as I re-dress her for the 5th time and tickle her tummy.

Usually I would feel an eagerness for her to return to school just so I can get on top of jobs and do some errands… but it has been so nice to spend some quality time with her and have some pyjama days recuperating and shunning whichever responsibilities can wait.

Her positivity and joy have spread to me and I feel privileged to have sneaked some of our best ever cuddles. As you can see from the photo… she is the human blur and cuddles can often involve facial injuries and all sorts!

I feel guilty for needing that time away, but I am sure it helps make us less dependent on each other, and she really loves school too.

Dependent as she is on me for all of her care needs – when she isn’t there a huge part of me is missing and every moment that passes, she crosses my mind in a big way.

Right now, her face is so pale, her skin mottled, and the darkest of circles around her eyes.

And yet that smile can still light up a room and make strangers grin from her infectious expressions. Tonight, she rolled off to sleep laughing to herself with joy.

A laugh that to me means “We can do this.” and “you’re doing the best you can mummy, and I am grateful”. I am beaming with pride at her acceptance of the many challenges she has thrown her way and her strength to recover each time.

Phil and I had gone away for two nights whilst she was in respite.

I was tentative about it as I knew she wasn’t 100% before we left. I woke up the second day to a missed call at 02:30am. Immediately racked with panic and guilt (guilt I had slept through the call) I called them to find that she had encountered another unstable night.

We went left the hotel immediately and rushed home. I am glad now that we stayed so local… people laughed when I said our “holiday” was in Manchester, but this proves exactly why!

The return to reality felt like a cold, hard slap to the face… the out of hours doctors, the Sunday scramble to the pharmacy, the influx of stained clothing and bedding and so on. That first night home I felt grief stricken by it all, but I find I am in a place now where I am just so glad, she is getting better.

Her health this year has been so erratic.

She managed to go 4 years seizure free… and this year she got an epilepsy diagnosis. On top of this she has become ill more frequently than usual – I attribute this to her starting school full time and therefore being exposed to more bugs.

I think the sooner I learn to accept that actually her starting school may not mean I can look for a job… and that I need to be on call for any emergencies, the better.

I have never been one to enjoy surprises, I like a plan and I like to know what’s happening.

So, all of this has been a huge learning curve for me. I wonder sometimes how everyone else deals with these issues. I wonder if sometimes I dwell too much, or that maybe I should have more energy reserves than I have.

I wonder if it will get easier one day or if this is just how it will be. I wonder if one day a medicine will be invented that dissolves all mucous and renders us totally clear and able to breathe.

I spend a lot of time awake at night listening for her scary night sounds (coughing, spluttering, rattling), trying to distinguish between her needing help… and our loud snoring dog!

My Son is in a Wheelchair

My son is in a wheelchair. Actually, right now he’s in a specialist pram but he will be in a self-propelling wheelchair within the next month.

When we go out, we face the stares of anyone we pass already so I know that’s only going to become more obvious to us when he’s in a self-propelling wheelchair (the one with the big wheels at the back!)

But you know what, I would stare too.

It’s what we do! We see something different and we look because, well, it’s different!

I just wanted to write to say that I don’t mind the stares, the looking doesn’t bother me and it certainly doesn’t bother my son, he loves the attention!

I wanted to write to tell people not to be ashamed for looking, don’t feel embarrassed or rude when I you notice that I have caught you looking. Instead of shying away though, wave hello!

No one enjoys the feeling that people are talking about them in secret, whether it be good or bad. Don’t whisper, don’t wonder…

Come and ask questions if you have any!

My view of wheelchairs rapidly evolved when I became a parent of a child with a physical disability. I used to think of wheelchair users as “wheelchair bound”.

But I now realise this term is often insulting to those people who enjoy the freedoms that their chair gives them, even whilst society continues to place barriers and challenges for wheelchair users, being in a wheelchair is NOT a bad thing!

I don’t want anyone feeling sorry for my son because he’s in a wheelchair and I know for a fact that he wouldn’t want that too!

Because there’s nothing “wrong” with him.

He’s an extremely happy child and has the most infectious smile. He is very clever and makes friends very easily!

I don’t mind your stares but I would love for you to come and say hello too.

I am more than happy to answer any questions you have and I can guarantee you’ll walk away with a smile!

My son is in a wheelchair and that’s ok.