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.

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!

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.