It is deaf awareness week this week, and we as a family have so much to be thankful for.

Our youngest daughter Brielle is 9 and she’s profoundly deaf. She also has bilateral cochlear implants.

She cannot talk, though she does make some noises and says what sounds like “hiya!”

We embrace ‘total communication’ for her.

This means, in a nutshell, she receives input  verbally/spoken language, through sound, pictures/vision, sign language and tactile signs/gestures, switches, technology and tactilely/ touch.

Some would argue that the deaf community is made up solely of those who are completely without hearing and rely on sign language and lip reading for communication.

But I would suggest that the deaf community is a lot wider. My daughter is deaf though she heavily relies on the hearing offered to her via her implants. She loves listening to music and nursery rhymes and understands many familiar words in spoken English.

The way she expresses herself, however, is predominantly in sign language and gestures. We’ve been fortunate as a family to receive guidance in deafblind sign language as well as family BSL (British Sign Language)- taught to us in our home over a series of months. This was so kindly sponsored by the British Deaf Association.

We are constantly learning new signs ourselves and teaching them to Brielle.

She could not absolutely not communicate without sign language, it is her preferred form of expressive communication.

I really think they ought to teach all primary school children basic BSL as part of the national curriculum. Too few people know sign language and that lack of basic communication can be very isolating for people who are deaf in our communities. It’s important to note that a great deal of deaf people chose NOT to use hearing aids or implants.

I work part-time as a nurse and any deaf patients or relatives I’ve had on the wards have always been so thankful that I could *attempt* to communicate in sign to the best of my ability! It makes such a difference to someone as it’s their FIRST language, their ‘mother-tongue’.

So go ahead and teach yourself some basic signs! There are many free resources online to help from simple BSL fingerspelling (the alphabet) to my favourite iPhone App called “Sign BSL”. You can basically search any word and it will give you a few options/videos with the sign language – awesome!

One part of having a medically fragile child I struggle with is the constant anxiety of her catching an illness, and the havoc it will have on her body. Having a brain injury can make it very difficult for the body to interpret illness or how to properly respond to it. That’s why the idea of a pandemic could be particularly stressful for a special needs parent.

When it comes to your average cold and flu season, I find myself in a constant state of running the odds-on risk/reward for pretty much everything. I may take a trip to the zoo which has large groups of people but is an open-air environment. The threat level feels lower. I may however, avoid other children’s birthday parties which can sometimes present itself as a germ factory when small children are involved.

With the growing numbers of COVID-19 cases it feels like the world is closing in on us.

I do everything I can to mitigate risk, but it’s not unusual for us to need hospital attention for extended periods of times throughout the year. I’ve always felt so confident about the care in our local hospitals, but in the current health crisis it no longer feels like the safe place it had once been.

I have been criticized in the past for the level of paranoia common illnesses bring me. I struggle to internalize fears, so I always seem to wear my heart on my sleeve about things. She contracted a common stomach bug, and it landed us in the hospital for two months. It resulted in two procedures that required general anaesthesia and a central line. We were told her organs may never fully recover from it. A typical child would probably recover without medical intervention within 48 hours.

She also has weak throat muscles that can make keeping her lungs clear an issue. Her aspirating is a constant concern of ours, and even on good days she struggles to handle secretions. It makes the idea of a virus that can have such impact on otherwise healthy people terrifying.

I find myself getting frustrated with others that have less concern about this. I hear statistics on the probable 97% survival rate. This means very little to a family that has been in the “3%” on multiple occasions. Only 1 in 200,000 mothers will experience a placental abruption yearly, only 1.5 in 1,000 live births will experience HIE, only 16% of babies with moderate/severe HIE will develop epilepsy, and I think you catch my drift. I’m just not one that is comforted by statistics.

I have tried to refocus my energy on things I can control in this situation.

Practicing social distancing, and also allowing my family to take this time to refocus on each other. I’ve also begun FaceTime therapy sessions to remain productive throughout this.  This whole situation has been an emotional roller coaster for typical and special needs families alike.

I hope we will soon see the light at the end of this. I hope people outside the special needs community get a broader perspective on how isolating it is to live in fear of an invisible threat. I’m working hard to recognize the silver linings in things. I hope we will walk away from this more connected than ever.

Have you ever felt guilty if you do but guilty if you don’t too? As a special needs parent this feeling is all too common with me.

I feel guilty for giving medication that is causing side effects but guilty if I don’t give it as the original condition would get worse.

I feel guilty about sending my child to school when he can’t tell me if everything is ok but guilty for keeping him home when he needs to be around others and learning.

I feel guilty for having a messy house but guilty if it’s clean because then it means I haven’t been spending time with my children.

But one of the worse ones of all is regarding siblings.

I feel guilty when my daughter isn’t bonding with her brother or showing signs she loves him but then I feel equally guilty if she’s caring for him like an adult.

The other evening, I was cleaning the bath after my son (it has to be cleaned right away for reasons I don’t need to go into) and he was lying on his bed waiting for the next part of his bedtime routine. I could see him but I just had to complete the urgent task I was doing first. He was safe and happy and supervised.

Then I heard my daughter’s tender voice and snapped this on my phone.

She knew his routine. She knew what he wanted and understood his nonverbal communication. She saw I was busy and stepped in.

It was just a bedtime story but it was also so much more.

I stepped back and let her carry on. It was a beautiful moment and I refused to feel guilty that she was caring for a sibling with complex needs. She was just reading to her brother because he can’t read himself.

I chose to see it as a brother and sister moment rather than caring.

And in that moment, I lost the guilt I have carried for years when I see my daughter caring for her complex needs brother. The guilt that has crippled me when she pushes his wheelchair, fetches his medication, strokes his cheek as he cries and holds his hand when he’s in hospital.

Sibling are meant to be together; they are meant to have a strong bond, fall out, make up, play together, and share experiences. When my daughter cares for her brother, meets his needs, helps with his routine, soothes him and advocates for him it’s because she is just being the sister that she would have been anyway even if he wasn’t disabled.

It’s ok to have siblings care. It’s ok when they step in when you are tired and need support. It’s ok when they speak up for their sibling, cuddle them, support them and read to them. It’s not abuse to allow them to help like that.

You are not damaging them or hurting them.

In fact, it’s the absolute opposite! There is so much empathy, understanding, kindness, gentleness and helpfulness to be learnt from letting siblings help. It builds their self-esteem, makes them feel useful, gives them purpose, bonds them and helps them feel secure. It allows them opportunities to serve, soothe and grow. It brings maturity, a sense of belonging and strength of character. It builds resilience, courage and love.

So, drop the guilt when siblings step in to help. You are not harming them in any way. You are giving opportunities to develop them.

Let them be a sibling. Let them love. Let them care.

Where on Earth did the time go?! I cannot POSSIBLY be old enough to have an almost-9-year-old, can I? And yet, here he is; absolutely rocking life and enjoying every single moment, even while in full isolation as part of the shielded group of individuals especially at risk from the current pandemic.

I always find the week or so in the run up to Sam’s birthday to be somewhat… thoughtful.

This time 9 years ago I was the size of a barge, sick and tired of being sick and tired, and was counting the weeks down to my planned induction date. I was 33 weeks pregnant and very much ready for it to be over. The thoughts that kept me going through the hyperemesis and pain were those thinking about what our boy would look like when he was born – what his likes and dislikes might be as he grew, and the usual mum-to-be thoughts of what the future could hold. Two weeks later, evidently as impatient as his Mum, Sam decided to make his grand entrance rather earlier than expected!

Would I have wanted to know what the future held back then?

Absolutely not. I can safely say the knowledge would have fried my already imploding mind. Time may not necessarily heal all wounds, but it does make them easier to bear; over the years Sam has proven that he is so much more than just his disabilities. He is the funniest little chap, is a wizard at tabletop games, and has is a kind and gentle soul.

Every time he learns a new skill, or gives me a huge smile when I come into the room, he makes my day. Knowing how hard won those skills are, and the memories of when he was too sick to do anything other than sleep, all makes his achievements so much more impressive.

And just like that in another week or so my beautiful, courageous, determined boy will be 9 years old. Celebrating his birthday while in isolation isn’t a problem, he doesn’t particularly enjoy parties or having too many people around him – we will definitely be making a massive fuss of him of course, I suspect he’s got a few ideas of what he’d like present-wise, now to get him to communicate these to his beloved parents!

When your son has a progressive disease that will take away his mobility bit by bit and will dramatically shorten his life, one of the messages you hear over and over again from everyone around you is “make memories while you can”.

And that’s all very well – in fact it’s a very good point. But it actually puts huge pressure on a family to make life as perfect as it can possibly be, to make every day like an Instagram picture, to visit everything and do everything RIGHT NOW just in case. And that’s alongside trying very hard not to think about the “just in case” that’s making you do it.

So when COVID-19 forced into lockdown, my first response was to feel that we are being robbed of the opportunities we have to make memories with our son while we can, that while everything may well be “back to normal” in a few months’ time, nothing can replace the time we will lose, all the plans we had. And although clearly that’s true for everyone, the feeling is undoubtably more urgent when we know that Duchenne will relentlessly continue on its path even as the world stops.

These last few weeks have been challenging.

Two young children, one of whom has a complex medical condition as well as Autism, Daddy trying to work in our bedroom with constant interruptions. Sebastian has full time support at school and multiple professionals involved in his care, yet suddenly I am trying to provide for all of his needs while also parenting him and his brother.

There are many people in the same boat and even as I write this, I am painfully aware that we are able to stay safely at home through this – we are definitely the lucky ones.  

In amongst the co-existing chaos and monotony, there are flashes of magic. There is laughter, there is joy and there are amazing moments that will be imprinted on my memory forever. I hope they will stay with my children too.

Perhaps we don’t need to work so hard to create those memories.

Perhaps we don’t need to spend huge amounts of money, to set up a picture-perfect scenario, a once in a lifetime opportunity. Perhaps we don’t need to feel failure when those days that we have spent so much time planning don’t live up to what we wanted them to, just as our Pinterest crafts and colour coded homeschool timetables don’t last beyond 9 am.

Because we are the same 4 people, the same family with the same flaws, the same frustrations and the same challenges. That’s true in Disneyland just as it is in our back garden. But crucially, the same magic will be there too. And that’s what memories are really made of.

The following blog was written a few months ago, our night carer is currently on hold until we can allow carers back into the home…

I have written many blogs around the subject of carers, and the feelings that come with it. It comes with an inner battle, you know you need the help, however you know you are also inviting somebody into your space, to help care for your child.

It feels pretty normal now, I love the company, the help and the second opinion when things may not be straightforward. Our carers have become part of the family, new routines have been formed, I’m left wondering what all the fuss was about.

However, introduce a night carer and things start to feel strange again.

Sometime last year, during a Child in Need meeting, my continuous struggles with sleep came into conversation, which followed with an overwhelming, emotional panic attack. I had gotten to a point where there was nowhere to hide anymore. I found myself feeling extremely exposed and vulnerable, with my exhausted self on full show. The anxieties, nerves, tiredness, and I guess dent in my pride created a huge dramatic attack, where the tears would not stop pouring down my face, and my hands were unable to stop shaking.

I felt ashamed to show my true colours of exhaustion.

Voices in my head took over any reasoning I had.

“But you already receive daytime help”.

“You only care for one child”.

Despite the voices in my head, it was time to have the conversation about more help, and time to accept it to myself, that we needed it. We received respite from our Hospice, however this is currently 7 nights per year, with them not being able to provide more, with so many children under their care, we needed another solution.

It wasn’t an easy process, and to be honest, I don’t mind this, as it ensured that we were getting the right care, and package for our family! Various meetings, panels, phone calls and emails, oh and not forgetting the paperwork! I guess I held back quite a bit too, I knew now that I needed it, but I was still living in the fear of the unknown.

The first night was strange…

We didn’t know what to do with ourselves, or when to take ourselves to bed. Our new carer was no stranger to our family, but a friend. The only way for me to finally accept help, was if I knew who the help was. Fortunately for our family, our Carer was seeking overnight caring roles, so the timing just seemed so perfect.

So, for one night a week we are left to sleep undisturbed for a whole 8 hours!

I’d love to tell you all that I am a new woman, with newfound energy, but the realisation is I’m still a tired mamma! I guess there is just no pleasing me ey!?

No, I joke, I just like my sleep and like lots of it! Our night carer is a true blessing to our family, I just hope they settle into our little family, like the others have, as the well-being of our carers, and their happiness is important, having the right people too. Zachariah has such a special bond with all who care for him, they all bring something different to the home. Our new night carer brings a gentle side, and the passion to pamper Zachariah and really get to know him.