I Worry Therefore I Am?

For extra fun they change in nature and some of his movements can look like seizures, but they aren’t. As a result we are always on the back foot and puzzling over what he’s doing and if it’s a seizure or not.

I worry about trying to convey this to other people who care for my son.

As a result I worry that they may miss-read the situation and use rescue medication when he does not need it. Not through negligence or malice, simply through misunderstanding him & his condition.

I worry about Sudden Unexplained Death in Epilepsy (SUDEP).

I worry about him choking on vomit if he has a seizure at night.

I worry about walking into his bedroom in the morning & finding him gone, much like a new parent can when thinking about cot death.

I worry that the seizures are making him too tired, which ironically can make him more likely to have seizures.

I worry the seizures make him sad.

I worry the seizures will cause him to lose what little skills he has learnt, or stop his development from progressing further.

These are worries linked to his main condition. I also have worries to do with the side effects.

I worry about his reflux causing him pain and discomfort.

I worry about his tone causing him to be uncomfortable, at times we’ve had him screaming for days on end.

I worry about the effect of his immobility has on his little body. On his muscles, back and hips.

I worry about the implications of his regular vomiting, aspiration and chest infections mainly, but also random things like the acid on his teeth enamel.

I worry about his reflux getting worse and him needing more dramatic interventions, a fundoplication, or continuous feeding or J feeding.

I worry about the effect of general anaesthetics.

I worry he isn’t growing sufficiently, especially when he is being sick numerous times as day and losing calories. When he’s not being sick I worry when he gains too much weight in too short a time period.

Due to the ketogenic diet I worry he is malnourished.

I worry when he doesn’t poo for a day or two.

I worry when his poo is too runny or too frequent.

I worry if I Google something.

I worry if I don’t Google it.

I worry if he hasn’t had enough sleep.

I worry if he sleeps too much.

I worry he’s on too many medications.

I worry about the side effects of the medications.

I worry about the interactions of the medications.

I worry about the unsuitability of our housing to meet his needs and keep him safe.

I have more normal worries too. I worry that he’s happy. That he enjoys his life and experiences. That he forms bonds with people, even if he doesn’t see them much.

These are the worries concerned with my lad.

There’s further worries to do with my husband, myself, the cat, our friends and family. It’s truly exhausting and no wonder I collapse into bed every night.

The emotional tiredness of caring for my boy far outstrips the physical.

When Family Can’t or Won’t Help

Fortunately I have a fantastic GP who knew us as a family well and who made absolutely sure that we had support and that I was taken good care of medically; but it was my parents who were the real angels of that time.

They drove the 70 miles to us daily for as long as we needed them, Mum helping with Sam, housework, anything.

But then my Dad started to show worrying signs of memory loss, and was diagnosed with Alzhemier’s and vascular dementia.

Now Dad’s condition is such that he can’t be alone so Mum and he come up as often as possible still, but it is far less often than before and than they’d like.

Not everyone can cope with the needs of a medically complex child, we are immensely fortunate that they can and that Mum has always been very hands-on with medications, learning how to deal with feeding tubes, etc.

Whether it’s a Mum thing or not, I don’t know… but from chatting with other SEN parents it does seem that it is predominately the Mum’s parents who step up to the mark when it comes to supporting the family.

The Dad’s parents do seem to be rather more peripheral, although as always there are exceptions (so groveling apologies if it’s this way round for you!).

In our family, this dynamic is definitely the one we live with.

Our little man’s paternal grandparents being far less willing/able to deal with his daily medical needs, although they still have a full role to play in his lie.

It does, however, make things much more difficult.

My parents live 70 miles away, they live 10 minutes down the road, however are nowhere near as happy to do tube feeds, meds, etc.  

While my Mum will spend the entire day on the floor with our boy playing, doing therapy, etc, his other grandparents tend to be more stand-off-ish and wary.

This, inevitably, causes issues… we would love for ALL Sam’s grandparents to be comfortable with his issues and to be able to step in and help out from time to time, it also have implications for Sam going for days out etc – after all, if you can’t feed him and keep him safe it’s a bit of an issue!

We’re fortunate that Sam has four grandparents who love him dearly, not everyone is so fortunate.

Even so, having half of his grandparents reluctant to help out does make things more difficult; resentment can start to build as one side of the family do more to help, while the other side see it as being the other grandparents spending more time with their grandchild.

You just can’t win. We are however incredibly lucky to have grandparents who *want* to be involved, many don’t have that.

Despite the usual tug of love issues, Sam knows that he is adored by all his family and really, that’s all that matters x

Why I Hate My Son’s Disability

I regularly feel like she gets neglected.

Obviously I am not talking in a ‘call the Social Services kind of sense’, but neglect is definitely how it feels.

Every time she asks me to play snap, if she can play hairdressers, or if I can read her a story, her brother will call out, need moving, need taking to the toilet, need help with something!

So I say: “Sorry, I can’t right now love, I will in a minute.”

And then that minute never comes.

Life with Hadley is all consuming.

And that is not his fault.

He is not trying to take me away from his sister.

He needs me, and it’s my job to be there for him.

I want to be there for him. But I find myself resentful sometimes.

I don’t resent him, but I resent what it could have been like.

I resent whoever it is up there that makes the decisions, for not giving me two beautiful healthy full term babies that I can equally divide myself between.

And so I cry myself to sleep for both of them.

Wishing there was a way to cure Cerebral Palsy and fearing that my little girl will grow up thinking that I didn’t care about her as much as her brother.

That she wasn’t as important.

This makes me feel utterly hideous.

Sick to the stomach.

This little girl is everything I dreamed she would be.

She is beautiful, caring, hilariously funny and so popular.

And I feel like I never see her.

She (and I) are so lucky in that we have lots of friends and family that regularly spend generous amounts of one-on-one time with her, and she loves them all so much.

But I want to do those things with her. I want to be the one that she laughs with and talks about all the time.

I want to be plastered in dodgy eighties make up and nail varnish that covers my entire hands (she did this to my dad!).

But the reality is that I only get to do those things occasionally when somebody else takes on the main care role for my son.

Or when he lets them.

Don’t get me wrong, we spend a lot of time all together as a family, but that’s not the same.

This is not the way I had things worked out.

This is not what I wanted.

And it’s my aim this year to ensure that things have less and less negative impact on her. And me!

We are sneaking days out together.

We went for a cream tea for my birthday a couple of weekends ago and it was lovely to sit and eat with her (and the girl can eat! She’s definitely mine!).

We also went to the theatre to see The Sound of Music (her favourite musical) and it was marvelous.

We sat munching popcorn and singing along at the top of our voices. It almost reduced me to tears. This is what I wanted life to be like for her. And us.

Tonight as I tucked her in bed and thanked her for being such a good girl and told her that I loved her more than anything, she replied: “Thank you for being such a good mummy.”

The lump in my throat felt like it was going to explode.

I hope she really believes that.

Pressure

At the same time, I’m scared that he’ll end up atrophying in a school that doesn’t push him and encourage him to develop and progress.

I honestly don’t know what to do for the best anymore, and it’s terrifying.

Currently, we aren’t convinced that Sam’s education provision is the right one for him… his teachers are missing him communicating, and don’t want to believe what we tell them he’s doing at home.

Currently, we’re awaiting a reassessment by an educational psychologist which will (hopefully) make things a little clearer but I’m not convinced that it’ll take much of the worry away.

Having a child with complex issues like Sam is a rollercoaster with even the most mundane things.

We don’t have the same choice as other parents in what school he attends, and the SEN schools by us, while all rated highly by OFSTED, don’t necessarily meet his needs.

Some are a long way away, meaning my little boy has to travel for an hour to get to school of a morning.

Sam like many others, finds himself in a school where the staff don’t have the time or resources to work with him as an individual – bless them, they try their hardest but how can you give one child 100% of your time and attention 100% of the day when you have several other children all needing that same input?

Having a 1:1 is a great help for many children, for us this is just yet another battle to fight as the Council feel that the School doesn’t need a 1:1 for him – I suspect if I have to point out one more time that a 1:1 is for HIM not the school I will probably go completely mad.

Sam’s current school is a generic SEN one. Currently we’re looking at all options including home schooling (something that I love the idea of but would quite probably hate the reality!), mixing days in school with days at home having intensive therapy and going to a different school full time.

Each option has its pros and its cons.

What we want from schooling is for Sam to learn how to be the best he can be!

I’m not fussed if he doesn’t go on to be a scientific genius a la Stephen Hawking, but I do want him to be able to live happily in an able bodied world, to be able to communicate with people and to be able to have a degree of independence.

I want him to learn how to control his random movements to allow him to use his hands purposefully, to learn sign language so he can let others know what he wants/feels.

I would LOVE him to be able to have a greater control over his body, so that he has an improved chance of being mobile, even if that means he is in an electric wheelchair but can control it himself.

My goals for my sons education may have changed significantly from those I had prior to his birth but the basic aims are the same…

I want my son to be happy, healthy and able to enjoy the life he has.

The worst disability in the world is a bad attitude, my little boy along with all his friends will do whatever they put their minds to x

The Joys of School Transport

It is something universally hated by all SEN parents – from the joys of badgering school/council etc to get the right forms out to the right people on time, to the moment when you actually do say “you have got to be joking” down the phone to a harassed, innocent individual from the Council transport team who has drawn the short straw of having to tell yet another parents that they can’t find a suitable escort for their child.

Trust me, you are not alone in this.

We knew early on that Sam’s seizures meant he would be far better placed in a SEN environment where the impact of his seizures was understood and the relevant support was in place with a 1:1 (that, dear reader, is a post for another day).

We started the process in April 2014, ready for him starting school full time in September.  First nightmare; getting school to fill in the cursed discretionary funding form and getting it BACK to the right lady in the council.

By the end of the summer term, school closed and still no form had arrived at the council.

By August, with my return to full-time work imminent, let us just say stress levels were stratospheric … the phone was going off every other hour as I tried, together with the SEN and assessments team at the council, to find a way around the lack of form… eventually and by the grace of God, funding was approved and the search for an escort could begin…

Ah, escorts.

We foolishly thought they’d find one in no time. Wrong again.

Some of the issues we discovered are:

1. None of the escorts are trained in how to recognise/deal with seizures – quite an issue when around 1/3 of their passengers are likely to have seizures as part of their condition.

2. In the school transport provided, there is one escort for maybe 2-3 children; all with differing issues/needs which could be physical, behavioural, or a.n.other.

3. In the event of a seizure, policy is to pull over and call an ambulance; said child is then transferred to ambulance and sent off to hospital while the others go on to school. Alone. Sam is non-verbal, like Hell am I going to allow this to happen.

4. And my favourite – the transport taxis are not allowed to carry more than 1 oxygen cylinder…. which meant that if there were more than two children on the taxi who carry oxygen, one would have to go to school without it.

Genius.

My favourite suggestion was that the four children in Sams nursery class who all had uncontrolled epilepsy could share a taxi together.

See points 1, 3 and 4 above.

Once I’d finished laughing hysterically and could actually get the words out, I explained as gently as possible why this would be a very, very bad idea indeed.

As a rule in one child starts to have a seizure, another will follow suit – it’s as if they don’t want to be left out – then the others may join in too.

You see, for reasons unknown to the world of medicine, children with epilepsy seem to spark seizure off in each other; whether it’s the stress/anxiety that comes from the carers that tips them over, we don’t know.

But any SEN teacher will tell you that it happens.

So. Here we were half way through September with no transport sorted. Both Sam’s Dad and I were working full-time so it was a bit of a nightmare.  Eventually, Jonathan’s Mum stepped in as an escort and at last, Sam could get into school!  Not everyone is so lucky – J’s parents only live 15 minutes away from us, and his Dad gives him a lift to work every day as they work in the same place.

So if you’re going through the turmoil of trying at arrange transport, my one piece of advice is to keep on at them!  You’ll get there, eventually, but be prepared for a few more grey hairs by the end of it all x

The Beginning of the Special Needs Journey

I wish more than anything that nobody else has to go through what we did.

But I hope that by telling it like it is, it may help somebody else who has experienced this kind of trauma, to feel less alone and less guilty (because no matter how much we tell ourselves it’s not our fault, we can’t help but take the blame for causing our children’s disability in some way).

And it might just help somebody notice the signs of pre-term labour. Because in my situation, I’m not sure the docs really thought the babies were actually going to arrive!

I was expecting twins and I knew there was a chance of them being early, but I had no idea what that really meant.

At 27 weeks and 2 days gestation I woke up at 5am thinking I had a leaky bladder. It didn’t seem like my waters had broken as it was just a trickle, but something inside told me to call the midwife. 

Plus I had a friend that had just had twins at 27 weeks, so I knew it could happen.

The midwife told me not to worry, but to come in to hospital to be checked over in my own time.

In fact I think they actually said “have a cuppa and wander in when you’re ready.” Very relaxed. So I didn’t worry too much.

A couple of hours later, after the initial lack of concern, my consultant confirmed that Twin 1 (my daughter) had ruptured her membranes and it was amniotic fluid leaking out, not urine.

After a scan, they told me they would try to hold off labour for as long as possible (hopefully several days or even weeks) as the fluid was only leaking slowly and was replenishing itself.

All very surreal, but I was being told not to worry so I tried not to.

Skip to a few hours later and I’m having huge contractions! But nobody believed me. They said the monitors didn’t show I was in labour at all.

HOLY CRAP! They were beyond measure. But having never had a child before, I presumed I was just being a wimp and it would pass.

They did however give me steroids (to help bring on the babies’ lungs, but they were very reluctant to do so as they still didn’t really think I was in labour.

After a few more hours I told a very nice nurse that popped in to check on me that the paracetamol I had taken really wasn’t helping (as politely as possible) and she looked at me and said: “Don’t worry. I can see that this is getting more complicated. I am going to speak to somebody and get you transferred. You can’t have these babies here! (they couldn’t take pre-term babies before 30 weeks at my local hospital).

Ok, so if I’m honest, I really started to feel a bit shit by this point and this was the only person who seemed to understand what was going on.

I was worried.

Skip half an hour or so and I’m in an ambulance that is winding in and out of heavy traffic with sirens screaming, having mega contractions every few minutes, whilst holding a sick bowl. (The sick bowl wasn’t for me, it was for the midwife – she got travel sick going so fast in the back of the ambulance! You can imagine my joy!

Arrive at new hospital (famous one from One Born Every Minute). Tell them straight away there is no chance they are getting me on telly…..to which they reply: “Don’t worry. You’re not in labour! You won’t be having any babies”.

Me:“Then what the blinking hell are these contractions all about then?!?!? And the blood that seems to now be pouring out of me? I might be new to all this, but I really don’t think these babies are staying inside!”

Or words to that effect!

Skip a few more hours, a bit more pain and various medical professionals telling me I’m still not in labour, the doc says he’s going to give me some sleeping pills (I think it’s about midnight at this point and this has been going on since 5am).

Then he says: ”Do you think I should check your cervix? Just in case?”. They hadn’t done so at all up ’til now through fear of giving me an infection.

Me (politely): “Um, well I haven’t done this before, so what do you think?” “OK” he says. “I will just take a quick look.” (Doctor goes downstairs…then has a mild heart attack).

“I can see hair”, he says to the midwife. And he wasn’t talking about the fact that I clearly wasn’t prepared for being on such display that day!!

Cue more panic. Particularly from me. My little girl was on her way out!

After a few minutes, they decided that there wasn’t a rush, they could give me an epidural and then I could try to deliver the babies naturally in theatre.

So the anaesthetist gets me ready and performs the epidural.

I am shaking like a leaf by now and it makes it tricky for them to get the (giant!) needle in. But they manage it. It doesn’t work. (FFS! Why me!??!). I can still feel and move everything below the waist.

Then all hell broke loose.

Twin 1 (my little girl) had made lots of room in my womb now that she had decided she wanted to be delivered and so Twin 2 (my son) managed to do a somersault and knot his umbilical cord. His heart rate plummeted.

It was like when you are on a plane and you constantly look at the cabin crew when the turbulence hits, to make sure they don’t look worried.

Well I was doing this with the docs and they were PANICKING!

They were shouting, swearing, running about…

My husband was rushed out of the room to get changed for theatre.

I was wheeled at warp speed down a corridor to the theatre where they tried to calm me down to give me a General Anaesthetic.

They gave me something to drink and pushed down hard on my throat. I think that was the quickest way to knock me out in an emergency and not just to shut me up, but I don’t know for sure.

That’s the last thing I remember. I was out. The babies were then born by emergency C-Section pretty quickly.

In fact the midwife told me afterwards that the doctors had already started cutting me open before I was under (this makes me feel a bit sick) so I presume the epidural had finally kicked in.

When I woke up about 3 or 4 hours later I was violently shaking (result of the anaesthetic) and had no babies.

They were in Neonatal Intensive Care and I had no idea if they had survived or where my husband was.

Finally somebody came over to get me another blanket for the shivers and explained that the babies were both alive, but that my little boy did “have to be worked on”.

At this point I didn’t really know what that meant and I was too scared, too cold and too exhausted to ask any more questions.

They told me they were both being ventilated and were in incubators and they weighed around 2lbs each.

Then my husband came in and I really only remember crying and begging him to tell me they were ok. The doctors asked if I wanted to go and see them, but I still couldn’t get out of bed as the anaesthetic, along with the shock and section, meant I couldn’t physically move. And I was so scared of seeing them and not being able to cope.

So my hubby went and took a photo of them both for me.

Nothing in the world could have prepared me for seeing those photos.

They looked so poorly and helpless.

But in a few hours time, I was going to see them and I’m glad that I got to see a photos first to prepare myself.

They were even smaller in the flesh than I had imagined, but at least I was already prepared for all the wires and monitors and that really helped me get a grip.

As a result of pre-term birth and the lack of oxygen that he suffered whilst his cord was in a knot, my son has a severe physical disability (Cerebral Palsy, spastic quad).

And I do find myself wondering if I had shouted a bit louder, if I had asked them to check my cervix, if they had realised what was going on sooner, maybe, just maybe, he would not have suffered the brain damage that he did.

Or maybe he still would have. I will never know.

I try not to think about that.

I try to think that it could have been so much worse. I could have lost him, or both of my babies.

And so I thank those panicky doctors for getting them out before something worse happened

It’s OK Not to Know What to Say to Parents Whose Kids have a Disability

So how do you deal with it?

For me personally, I’ll be honest.

It depends on my mood, how I process those sort of comments or questions at any given time.

My response and feelings vary, which I think is only human. I like to think of myself as a positive person, a ‘glass half-full’ kind of gal.

However, at times, I’ve taken people’s words very personally and harshly.

I find myself feeling defensive and maddened at what they’ve said about my daughter.

Yes… she does have more than her fair share of disabilities, and it is sad that she can’t do many things, but you know what?

She is MY precious little girl. She is LOVED immeasurably.

And she is HAPPY!

Another approach I’ve taken is to tell myself that the person directing the comments means no harm and is merely ignorant when it comes to people with disabilities and special needs. 

They simply do not know how to interact or what to say, so I should cut them some slack.

Maybe try to educate them a bit.

They’ve probably never known someone who is deaf with cochlear implants or seen a child getting a tube-feed.

So I take time to talk

That is, if they want to take the time to listen or if they really care to learn about our life.

I would say I’m pretty good by now at reading people’s non-verbal cues and interpreting tone.

I won’t waste my time offering information if the person seems bored or uncomfortable…

Being a mother of a child with multiple disabilities has made me more sensitive in how I interact with or start up conversation when I see another child with visible issues.

I don’t awkwardly and quickly avert my eyes or turn away when I see a kid who looks blind or is ambling in his walker.

I try to be friendly and offer a smile.

I may comment to his parent/ caregiver on how well the child is doing in his walker, or how cute her hairstyle is.

 So I’ll try to say the right things.

Things that I would like to hear, as a special needs mama.

And I’ve learnt that sometimes, you just may not have the right words.

You might be stumped.

But that’s OK.

In Praise of Special Needs Dads

Imagine how it must hurt, then, to be the father of a special needs child, and want very much to “make it all better”.

But no amount of making home-made equipment, expensive gadgets, or exercising with your child will result in them (insert future dream – “walking”, in our case, for example).

My husband has done so much to help Esther, and it does help, but for Daddy to accept that his little princess must struggle with things that he is powerless to change must be extremely difficult to swallow.

The silver lining to this dark cloud however, is the fact that to Esther, Daddy really is SuperDad.

There is no one she likes better to cuddle with, and no one can get her to sleep like he can.

He is the one she smiles and giggles for the most, and the one who calms her down when she is upset.

He is the only who has always been calm with her, while I often tear my hair out in frustration.

Daddy has all the strains of a job, and the added burdens of family concerns.

He gets up in the night with Esther before his day’s work and the hours of homework he brings back every night.

He always has medical issues on his mind, researching Esther’s condition and ways to help.

Future plans for travel, jobs, and further study are limited by the availability of medical care.

Dads do not typically come to all medical appointments.

Although my husband would like to, he cannot take that much time off work.

I usually make special request that he be there when I know it will be a difficult or important meeting.

As such, it often happens that the only times he meets with Esther’s doctors is when there is bad news.

He does not have the benefit of these hard-to-deal-with meetings interspersed with more pleasant ones.

The physio sessions where Esther does well or displays some new skill, or the neurosurgeon’s visit where we find out her hydrocephalus is gone, and he “doesn’t need to see us any more” (such wonderful words, from a doctor!).

Daddy not only has to support himself, but hold up Mom in the tough times.

My husband has been the epitome of this statement. I cannot tell enough examples of how he has upheld me, and given me strength to go on, when I was losing faith terribly.

Special needs dads put aside their own plans and dreams for their families’ interests.

Even essential things like jobs and studies sometimes take second place.

My husband was in the final exam week for university when Esther was born, 4 ½ months early.

He rescheduled 4 exams, finally sitting them after 2 weeks in NICU with all the noisy monitors and a baby on life support.

I know that some fathers choose not to be involved in their family’s life when a child is diagnosed with a disability.

I cannot begin to express the awe I have toward any parent destined to be both father and mother.

I cannot imagine looking after our daughter, or even our other healthy children, alone.

Any special needs parent sometimes just wants to lead a normal life.

I know my husband would like to be able to use his computer with two hands more often, without having to hold Esther, her bottle propped up against his neck, while he works, though he doesn’t complain.

One thing us moms need to remember is that, “He never asked for this either”.

It’s easy to get wrapped up in ourselves, especially if we are the one home with the children most of the time.

I recommend finding a good babysitter.

I know it is hard to leave our precious children, and sometimes the hassle seems more than it is worth: emergency numbers, dos and don’ts etc.

But I plead to you moms (as I myself am still learning), please take time for your spouse.

Find a babysitter you trust, and go out with your man – even if just for ice cream and a chat.

And for that time, try and switch off the worrying in your head.

Leave your phone turned on, but don’t check in on them.

Indulge your wonderful special needs dad in some alone time, away from the hubbub of “normal” life (whatever that means!).

They will appreciate it, and most definitely deserve it.

The Strength of a Special Twin Mummy

I do alright and like most parents of children with special needs I receive many compliments on my ability to keep going and the strength I must have.

I do keep on going yes and strength is undoubtedly something I have in my arsenal but it isn’t just within me, no!

My strength comes from all around me, my tireless husband who despite everything we have been through demonstrates every day his love for me and for his children.

Seeing him managing our budget and preparing meals, carefully balancing the books and working hard to ensure he is around when we need him.

I draw strength from him because I want him to be proud of me as I am proud of him. I love him and I feel his love.

My friends, they just know me. I am strong because I know at times of weakness they’d be there like a shot (probably holding a tray of shots).

I know it’s OK to cry and I do… lots!

But on the rare occasion that I do my hair and make-up for a fun night out with the girls there’s a stubbornness in me that refuses to go down the route of crying in the toilets and emerging blotchy and red eyed!

My big girl, my six year old makes me smile with her mature attitude to life. She was four when her brother and sister were born at 24 weeks.

Extreme prematurity affects siblings, there’s no way round it. For months she either attended daily visits to the two separate hospitals or stayed with grandparents or friends.

Her normal was in no way normal, but she enjoyed her special jobs of delivering my breast milk to the nurses and singing to the babies through the incubator doors.

Even now she is caring and kind to her brother and sister. Hair pulling and tantrums don’t phase her. I am strong for her because I want her to have countless fun and positive memories of her childhood.

It goes without saying that the twins give me strength, they don’t know how fortunate they are, how close we came to losing them.

It’s impossible for me to describe our NICU days, I’ve tried but I really don’t have the words yet. Suffice to say both babies were extremely poorly.

Miraculously M, my little girl is now medically well and developing steadily. Sadly T, my little boy suffered grade 4 bleeds on his brain which has lead to him developing Hydrocephalus, Cerebral Palsy, Cortical Visual Impairment, some hearing loss.

It is fortunate that he knows nothing of any of these medical terms and thoroughly enjoys every minute of every day.

Both twins exude happiness and a joy of life which is infectious and precious. I know how quickly these early years will become memories so I am determined to relax and enjoy them.

Parents, I am lucky to have three sets of parents including my In laws, Dad, Stepmother and Stepfather.

Just over a month ago though, I lost my Mum. Crash! There’s a massive void in my pool of strength now. I can’t fill it or replace her, I miss my mum like a lost limb and there’s no way to ease the pain.

I am weaker now than I have ever been and it shows. I see it in the mirror; my husband senses it and the kids must feel it too.

Hence, this blog. Can I draw strength from sharing my feelings?

Will this help?

I don’t know but I do know I enjoy reading other people’s blogs.

Maybe someone will be able to draw strength from this… I hope so.

Jo x