Juggling Motherhood and Grief

Back in November I submitted a rather exciting blog titled ‘Zachariah’s going to be a big brother’, and had it scheduled to be posted after our 20 weeks scan.

However, this was never published, as our 20-week scan didn’t go the way we thought it would.

The worst happened.

There was no heartbeat.

Our baby had died.

As many of us do, I blamed myself.

The questions started.

Did I strain my body lifting Zachariah?

Was it stress?

Was it my diet?

The only thing I could think of that could possibly take my baby away from me was ME!

Why are we so hard on ourselves?

My guilt didn’t stop there.

As once we had received the news that I had contracted the Parvovirus which had resulted in the devastation, and I was clear of being blamed.

I began to punish myself for thinking I could be privileged with another baby when I had Zachariah to take care of.

I felt guilt for losing so much time with Zachariah whilst I was poorly and tired carrying his baby brother.

I felt guilt for needing time out to grieve and rest after the trauma of delivering my sleeping baby. Zachariah had lost his Mummy, who was there, but not present and available in the way I used to be.

The more I punished myself the more distant I got.

I started to forget important things:

  • Appointments
  • Meetings
  • Things that I needed to chase
  • Things I needed to pick up
  • Paperwork
  • Groups
  • Playdates

I started to slack with physiotherapy, visual stimulation, play.

I was living in a very dark cloud, I was not only grieving over my baby, but feeling like a rubbish Mother who had also neglected her big boy.

The vicious circle got bigger as I tried to juggle the everyday things and prepare Zachariah for school by working on his EHCP.

I very quickly tired and needed space.

I almost found myself regretting the decision we had made to have another baby, and for believing that we could manage two children.

It was incredibly difficult and I couldn’t see a way out.

People would praise me on how well I was doing, and how well I had continued to keep up with the busyness of life being Zachariah’s Mummy.

But the reality was, I was barely keeping my head above waters.

4 months on, I am just about beginning to find myself again and releasing my advocate, caring role back out and getting my head back in gear.

I am being the Mummy that I have always aspired to be.

I’m getting my drive back, my passion and enjoying precious time with my boy.

Tonight, a friend told me that I haven’t lost time with Zachariah, as I haven’t completely gone anywhere.

And I shouldn’t focus on any time lost, but the time that I have had with Zachariah and how special that time has been, and the time I have to look forward to.

I needed to hear this and feel I can now move forward.

Remembering baby Ezra whilst being the best I can be for Zachariah also.

Grieving a baby whilst being full time mummy and carer for your other child is unbearable, and I pray that anyone else out there going through this finds peace and hope in the darkness.

Ezra will always be a part of our family.

Success! Tesco have 1,350 GoTo Shop Trolley’s!

Thanks to our Firefly Community the GoTo Shop campaign is getting bigger and better!

Tesco first trialled the GoTo Shop in July 2015, here we are almost 3 years later and look how far we have come.

There are now 1,350 GoTo Shop trolleys in Tesco stores across the United Kingdom, find all store locations here.

This now takes us to a grand total of 3,500 GoTo Shop trolleys throughout the UK and Ireland – how incredible!

But we aren’t giving up just yet, there’s still lots of campaigning to do – our mission is to see a GoTo Shop trolley in every retail store around the world.

If you want to see a GoTo Shop in your local store, we need you to get involved and let your store know.

You can do this by simply downloading a campaign leaflet and handing it in to your local store manager.

Get involved, get campaigning and together we can make a difference.

When It All Goes Out the Window

Sometimes it’s about dirty nappies, screaming, difficult hospital appointments and even mess.

Actually, mess is pretty standard in my house, especially since my son discovered that things can go out of windows!

I should be happy that he can ‘post’ things after all it shows great fine motor control and persistence.

I should be delighted he has the mobility to climb to be near the window.

I should rejoice that he has the processing skills to think that things can be moved from one place to another and that he can use his hands to do this.

Well I would be happy, except I find it quite frustrating that right now everything is going out the window.

In the case of my son it is socks, underwear (so embarrassing!), shower gel, shampoo, soap, toothpaste and toothbrushes and anything else he can find in the bathroom (for the record he broke the locks in order to do this!) that gets thrown out of windows. I can tell you the noise and mess it makes is quite incredible.

How he has missed hitting my car I have yet to work out. I hope he never takes archery lessons!

I also get a text from my neighbour opposite whenever she looks out to see this (see photo above.)

The thing is while this may be humorous and entertaining it is also highly dangerous (and expensive!) and it means so many other things in life ‘going out the window’ too, in another sense.

Routine has now gone out the window too since every minute of every day involves ensuring all windows are locked and all throwable items are secured.

Bath time and shower time has gone out the window.

For a start we have no bubble bath left nor shampoo (ah now I understand why this new skill was discovered since he never did enjoy hair wash time!) and shower gel for us has been splattered over the back patio instead of on our bodies.

Even if we did manage to find any cosmetic products for a quick shower you dare not risk opening the window to let the steam escape. It certainly would not just be hot air leaving the bathroom if you did that!

Getting dressed has gone out the window, especially if you happen to want to wear a pair of socks.

I am hoping the window cleaner may help with the pairing of socks when he has his ladder here. Until then should I send a note to my son’s school saying the neighbour to his sock is currently on my roof?

Calm mornings have gone out the window.

On wakening I panic and run right around the house to ensure all windows are still locked and nothing more has been posted.

Oh, to return to that calm cup of tea before chaos ensued…

Fire safety has gone out the window.

Apparently, you are supposed to have at least one window unlocked at all times.

That isn’t really an option right now so we have to be vigilant and aware always.

We are ‘going with the throw’ right now and hoping this is another phase. Raising a disabled child really can be heavy going but it also has its humorous moments too.

Thankfully my sense of humour hasn’t yet gone out the window.

Although, if it happens to be lying around anytime soon you just never know –

At least someone is having a smashing time right now!

GoTo Shop

Parents shouldn’t have to struggle to go shopping with their child.

Unfortunately, we know that many do.

We’ve been asking for their thoughts and opinions on the Firefly GoTo Shop Cart – here are just some of the responses we have received:

–  “Great to see this the experience the children get from shopping with mom and dad is priceless and the bond is even better”

– “I think every store should have about 4 each at least. The people that would sit in them would love to be out and about like everyone else and the people that help them can go to the store to get stuff for both people.”

– “It would be awesome if they had them for all ages and sizes.”

– “All stores should have this”

–  “All stores should consider this special needs cart.”

– “This would make shopping soooooooo easy and enjoyable!”

– “We visit USA once a year for therapy and can’t enjoy shopping trips like we enjoy shopping trips here in the UK because the other special needs carts just doesn’t support my daughter The GoTo is amazing and is in almost every supermarket here in the UK now. It’s great we love it and would love to see it in the USA”

– “They should have three or four in very store”

– “The other special needs carts won’t support my daughter there is no lateral and no head support. They serve different needs!”

– “Although the current special needs cart is a wonderful addition to our local retailers, it does not properly fit all children. My son is 2 years old, 24lb with poor head and core support. I support the GoTo Shop for the Moms of smaller special needs babes”

– “All stores should have one there are a lot of special needs children out there”

– “The current adaptive cart is good for bigger kids but this would be perfect for smaller kiddos so they don’t slide off to the side”

– “Arvada, CO needs them would make shopping with all my kids so much easier than to push a wheel chair and pull a cart”

– “Yes!!!! We’ve tried the other special needs carts and it was an epic fail. I left frustrated in tears. My son is just too tiny for it. We NEED them (pretty please).”

– “Same! The other carts are made for adults. Kids are waaay to tiny. My son hates it.”

– “Every place that has shopping baskets should have this”

– “Albany, CA needs one. Other special needs carts are just too big for my toddler who has muscular dystrophy”

– “This will be the only way I can shop with my son without having to leave him with someone.”

– “My daughter cannot sit in a buggy and is still way too little for the other special needs carts”

– “My 5 yrs. son is too little for the other special needs carts. They don’t give any trunk support. He is in a wheelchair otherwise, which makes shopping VERY difficult”

– “Target in Manhattan beach California needs one ASAP! The other special needs carts are great for older kids and adults. The go to is better for smaller kids”

– “Lake Grove, NY! Whole Foods Market. They’d have a customer for life if they had this cart!”

The Firefly GoTo Shop Cart which has transformed shopping trips for special needs families in over 3,500 UK stores, is now available for distribution in the US, Europe, Australia and Canada.

Today we’re calling on our US families to get behind the campaign by downloading the US Campaign Leaflet and handing it in to your local stores to make store managers aware that the GoTo Shop Cart is now available in the United States.

Download the leaflet here.

If you require more information, assistance or if you want to let us know your progress feel free to contact [email protected]

National Sibling Day

Those of us that are the parents of a child with additional needs, or who support a child with additional needs, so often put so much of our time, energy and focus (and rightly so) into helping that child or young person to thrive, to engage with the world, to develop as fully as possible, to be a part of all that we do…

It can become all consuming, demanding much of our conscious and unconscious energy as we do all that we can to make a difference.

But for many of us, our child with additional needs or disability is not our only child.

We may have another child, or several others, all of whom need love, nurturing, care and support too.

In our case, we have Phoebe, who at 18 is two years older than James and has grown up for most of her life in a home that includes a child with significant additional needs, and all that that brings.

Phoebe at various times is a junior carer for her brother, helping out with a range of support tasks that help to keep the wheels on our particular family bus.

She is great at spotting when James is starting to get distressed about something and can either let us know or, usually, will just deal with things herself.

She’s cleaned up stuff that she’d rather not see again (but probably will), she’s got up and come to help in the middle of the night if James is having a meltdown, she’s watched endless episodes of Postman Pat or Percy the Park Keeper with her brother, helping him to choose the next video to watch.

She also great at calling us out when we’re letting James off lightly for something he’s doing that is less to do with his Autism and more to do with being a 15-year-old who is pushing boundaries!

But she’s also missed out on a lot of things that many young people take for granted.

The times we’ve had to skip going to something, or come home early, because James is struggling…

Going out as a family is that much harder when an unpredictable younger brother may do something that either means we have to abandon our plans or keep within a small set of activities that we know James can cope with.

We can’t just decide to go out to the movies, or for a meal, on a whim as most families can!

We tend to invite people around to our house rather than visit, generally because it’s easier for James when he has the familiarity of his own den, his own things, and we’ve got everything we need to support him; whereas Phoebe might have liked to go somewhere different, anywhere different, for a change!

Even family holidays can prove unpredictable, with a simple trip to the beach or to some gardens being fraught with uncertainty!

As parents, we were able to understand a little better at diagnosis what having a child with additional needs would mean (although in reality we still had everything to learn!)

For Phoebe, who was five at the time, it just meant her brother was a bit different to the brothers and sisters of her friends.

As she grew up she noticed the differences more, asked more questions, learned more about her brother, was affected more by living with him.

One of the ‘A’ levels that Phoebe is currently studying for is Psychology, and this is teaching her even more about Autism in general and her brother in particular;  for example about neurodiversity, the idea that neurological differences like autism are the result of normal, natural variation in the human genome, which is increasingly gaining prominence.

In all of this, Phoebe rarely complains (although she has her moments), she gets on with life and the challenges that being the sibling of a brother with additional needs brings.

There are times when she mentions that all of our time and energy seems to be focused on James, and that she doesn’t get enough of our time and focus, and that’s something for us to do better at… to learn from and to change through.

But I’m so incredibly proud of Phoebe, for the well-rounded, caring, thoughtful, intelligent young woman she has grown up to be.

There are many thousands like her across the country, who quietly cope while their brother or sister is having a difficult day.

Whether we parent more than one child, or whether as children’s and youth workers we care for them in other ways, let’s celebrate what a wonderful contribution they make to the world, how hard it can be for them sometimes, and make sure that we love, nurture and care for them, thanking them for all that they do.

National Sibling Day

My brother finds things hard.

He’s rubbish at his times tables and he can’t write his name. He can’t talk and mummy still dresses him. He can’t read and he can’t play games.

He goes to hospital lots because he shakes and screams and his eyes don’t work right.

Everybody loves my brother.

Everybody talks about my brother.

Everybody says he is special.

Sometimes I wonder if I am special?

I don’t get a bath every night but he does. He screams at me if I want a bath because it isn’t his routine.

I just tell mum I don’t want a bath as I hate him screaming.

He screams at me when I don’t have a dummy in. It’s not fair because I don’t want my friends seeing me with a dummy.

He doesn’t care about me. He screams when I eat.

He has to be first out the car; first in the house and he screams at me if I come in the house with my coat on.

He screams if he gets dressed before me in the mornings and he screams if I touch any of his toys when he is in the bath.

He screams at me if I wear socks at bedtime.

He screams all the time and I hate it.

He attacks me too.

If I take too long eating he attacks me.

He has hurt me lots.

Mummy says he doesn’t understand but I think she loves him more.

He has broken lots of my toys. He walks over them or he throws them or fiddles with them.

It’s not fair because I don’t touch his toys.

He won’t let me in his room but he comes in my room and takes my clock off the wall or feeds my fish horrible things like bubble bath.

Sometimes I hate him.

Sometimes I think mum and dad love him more than me.

Mummy takes him to hospital. I don’t like it there because it’s boring but I don’t like that he gets mummy and I don’t. I don’t get time with mum like that and I always get left with other people like gran.

Maybe mummy doesn’t love me?

My brother got star of the week at school.

I told him he was great even though all he did was scribble on a bit of paper.

I got playground award for joining in games with other children and he never even looked at me or said well done.

I know he can’t speak but he never even looked at me.

That made me sad.

I love Isaac.

He can be funny and silly and he has teddies with no clothes because he has chewed all the clothes.

He likes eating and watching Bing Bunny and street map google thingy.

He likes lifts and hand dryers too.

He makes me happy and he makes me sad all at the same time.

Everyone sees my brother but sometimes people don’t see me.

National Sibling Day

I have six in total.

Three brothers and three sisters.

They definitely kept me on my toes as a child and as adults they are always in the background; they are the link to my childhood, my parents and where I am from. They will always be that link. They will always know the childhood we all shared; there is a certain comfort in that too.

Thankfully my siblings are very much in my life and always around if I need them.

As a child, I was envious of those who had only one sibling or none; but as an adult I’m relieved I have three of each, I feel lucky.

I am a sibling to a man who has been rocking an extra chromosome for over 40 years now.

My childhood and my boys’ childhood are vastly different.

I am thankful for that.

As a child I was bullied because my brother was different.

We got beat up.

We got called horrible names and worse, our brother was ridiculed where he was supposed to feel safe; in our own neighborhood.

Yes, together the seven of us would take on our brothers bullies whom often became our own bullies.

My sons don’t face the same challenges as I did.

They are brothers to a very special boy who has Hunter Syndrome.

The most they have ever witnessed is staring and they both make me laugh when faced with the ‘looks’ thrown accidentally or on purpose by strangers.

They live in a world where acceptance is something that people care about.

They live in a world which is striving to see ability in disability.

They have never heard the ‘R’ word or have never been roared at by a group of kids saying that their brother is a ‘Handicap’ – Handicap here in Ireland, is as offensive as the R word.

While we are all guilty of thinking that we haven’t come a long way with acceptance; I am here to tell you that we have.

In 1980’s and 1990’s Ireland; our brother and our family heard those words loud and clear in the neighborhood, in school and in the local community when people would refer to my eldest brother.

We still have a ways to go, but we are a much more accepting society and for that I am thankful.

My sons have never cried because another child at school called them names due to their brother’s syndrome.

My sons are able to talk about what it is like to help out at home far more than any of their friends have to.

My sons know what a feeding tube and a port are and what each of these do for their brother.

They have a voice. I felt mine as a child was silenced (when it came to my eldest brother) I was never given the opportunity to educate my classmates, my neighborhood friends or the local community as to what indeed it was like to have a brother with a syndrome.

My sons have support, not just from us, but from the community, extended family, friends, school …

The support I had as a child was within the safety of our home, where we were all the same.

While my sons are dealing with a far harder situation as children than I ever did; I am so thankful that they do not have the bullying and ridicule to deal with on top of that too.

When strangers stare at Ethan his brothers ask very politely “Do you know my brother?”, at that point the stranger either pretends they didn’t hear the four-year-old and they move on or they apologise and ask a little about Ethan; which is wonderful.

Asking is always accepted and staring can always be avoided.

So, to us, the siblings; they say we are often forgotten when we have a sibling with Special needs, and to some extent that is true, but we are always always remembered; we are the protectors, the educators, the supporters, the listeners, the understanders, the nurses, the doctors, the carers, the ones who know more about real life than any of our peers …