My husband and I recently had a discussion about how difficult it is having a child with such complex needs. It’s NOT easy by any means and I believe with my whole heart that we were chosen for this. We were chosen to raise a child like Sawyer. We advocate and work well together to find the absolute best solutions for him. That does not mean we are perfect, in fact we are far from. What it does mean is that we work hard and never give up trying.

Sawyer has had a cough and vomiting upon waking up for YEARS. He has had what was classified as “reflux” for years. As a baby he had what we feel is true reflux. We do believe he has reflux still but we were getting no relief from the reflux medicine. The phlegm that he produced after nap and when he woke up or laid on his back on the floor too long was a lot. We have brought this up at multiple doctor’s appointments and they have tried multiple things.

He’s been on all kinds of medicine for this problem with no relief.

It’s been a long journey and lots of throw up. We kept thinking, there has to be more. At one point they allergy tested him and said he had no allergies. It was hard for me to believe because I suffer from very bad allergies.

After throwing up for the third time last Friday I called my allergist. I had hit my breaking point and I decided that getting him tested on my own to rule out allergies. This was never brought up at any of the dozens of doctor’s appointments, even pulmonology.

It’s frustrating for me as a parent because it’s easy to lean on the providers, it’s their job, they know all. It feels like rule breaking when I don’t listen to them or question their judgment. I have done this in the past and gotten the answers I needed but it goes against my nature.

Yesterday at the allergist, Sawyer tested positively allergic to almost every single thing that I did.

I cried as the doctor showed me the results that I saw on his arm. It was a relief to have answers but I was kicking myself for not going in sooner. He is not only allergic to outside pollens but dust mites, dogs and cats. We have to change a lot in our environment at home as well as clean like a crazy person. It’s not going to be easy and it adds more to our plate but we hopefully have more answers and his quality of life will be much better.

As parents of children with complex medical needs we often spend times scratching our heads, trialing new things and kicking ourselves when it’s the easier answer. I carry a lot of mom guilt but I have to give myself grace and remember that I am doing every single thing I can for him to give him the best life I can.

My son is 11. He’s average height, loves YouTube and particular about what he likes to wear. He eats me out of house and home and would rather walk away from me than with me when out in public. In so many ways he’s an average 11-year-old boy, yet in one way particular he’s very different:

My son can’t talk.

He’s never been able to, though over the years his communication skills have increased a lot, as has his understanding. People think those who can’t talk somehow can’t understand and while my son does have learning difficulties, he understands much more than people think.

He also has plenty to say!

Every day I talk to my son just as I would his sister. He has words and phrases he loves to hear (don’t we all?) and he loves to get me to say certain things every day because that makes him smile and become excited. So, I say them…as often as he wants.

He loves to tell me what day of the week it is. He uses a board with the months and the days on and every morning points to the right day. He then points to his fingers as he loves to know what he is doing that day. I could use visuals, and often do, but he loves to hear me talk and he looks at me and smiles and flaps as he hears that, as always, his day will end with a bath, some supper and a story.

He will bring me things: his coat, shoes, cup, his iPad with where he has gone on google street map or his swimming trunks.

He doesn’t need words to show me what he wants and needs.

We use a 100 square number board with little numbers that go on top and we play games of finding the numbers. He’s amazing at knowing what comes next and will often pick up a number and ask me to I tell him what number it is and he laughs and smiles as if saying your got it right mum!’. For years he carried around a magazine that had been posted out from a food delivery company and he would show me foods pointing at his mouth or my mouth or his sisters to say he wanted that person to eat the food he was pointing to. He loved us playing along and pretending to eat fish and chips, or sausages and he would flap excitedly if I actually made what he requested for his next meal.

He shows me photographs on his iPad and we talk together about memories. He signs ‘yes’ and ‘no’ to questions and points to different parts of the photo to hear me talk about it.

People think our conversations are one sided, but they are definitely not.

It’s true he can’t make up stories, tell me how he’s feeling or talk about his favourite book. I would still dearly love to hear his voice, to hear him say he loves me, to have him sing and tell jokes. But I also treasure the conversations we have daily because they are precious and intimate and beautiful.

Having a nonverbal child can be heart-breaking but it doesn’t mean you can’t have conversations together.

It just means those conversations involve so much more than words.

The last few months have been tough for us all; no family to visit, no carers in to give a bit of respite, no therapists to carry out therapy, no places to even go to escape the house.

The days have been long and exhausting, juggling schoolwork, housework, the care needs of two boys and trying to keep everyone happy along the way! By bedtime, each day it feels like I have climbed a mountain of jobs.

In these last few crazy months though, there has been a new kind of kindness that’s kept me smiling on even the hardest days – “the doorstep kindness”.

I’ve heard the ding-dong of my doorbell several times in the last while, went to answer and found various little packages to make me thankful. On the doorstep I’ve found bags of home-made muffins, boxes of cakes & treats. There’s been knocks and bunches of flowers left, there’s been someone standing at the edge of the garden saying, “you’re doing great with the boys, keep going,” there’s been sweets left to cheer the boys up. I’ve opened the door to run to the bins and found fudge, books, more cakes and little letters for the boys. We’ve had awards sent to the door from school, toys delivered for the boys and the postman even delivered a little teddy for us.

These have been small acts of kindness from lots of different people, but they have had a big impact on our days.

They have shown us that even in these worrying times someone is thinking of us. They have constantly reminded me that I have a team of people looking out for us, even when they must do it from a distance. They have been a reminder that we are not going through all of this alone.

So, when life does eventually return to some kind of normal, I hope we will remember the “doorstep kindness.”

I hope we have learned lessons from this, I hope we continue to support each other, I hope we continue to show others we care because just a small gesture of kindness really can change the course of someone’s day.

We’re over two thirds of the way through our anticipated 12 weeks of shielding. I don’t doubt it will have to be extended beyond the end of June for us, as the virus still rips through communities without prejudice.

Things are improving albeit very slowly. The world is still turning but the life we once knew has been ripped away from us and replaced with the fear that being too close to somebody in the street could potentially infect us with a deadly virus that at present has no known treatment, vaccine or cure.

I don’t know about you but whilst I’ve found this period of isolation from the big wide world and those that I love extremely challenging, exhausting and lonely, it’s not been as bad as it could’ve been. Thankfully I’ve managed to protect my son throughout this terrifying time, my family and those closest to me have luckily not become poorly and maybe the biggest relief of all is that I or nobody close to me has suffered the loss of a loved one due to this deadly virus.

I’ve enjoyed the time I’ve spent with Jaxon.

It’s tested me beyond my limits on more occasions than I’d care to admit, but there have been many days I’ve woken up, thankful that the only thing I need to worry about that day is keeping him happy. I’ve not had to run around getting us both ready, tackling the rush hour traffic to get us to an appointment on time. I’ve been able to sit in the moment and just enjoy being here with him.

Don’t get me wrong, I’ve missed some of his appointments and I’ve worried about the long-term effects missing so much therapy will have on him. I’ve struggled without the team of fantastic people that usually surround us, giving us endless support. I’ve missed the respite I receive from Jaxon’s dad and my parents as I made the decision in the beginning to go it alone so to protect him as best as I possibly could. I’ve risked my own physical and mental health to keep Jaxon as safe and well as possible. I, like so many others all over the country have made incredible sacrifices throughout this difficult period.

So, as the world begins to recover, as the lockdown measures begin to ease, as shops and businesses start to reopen and society attempts to return to how it once was, I find myself asking what will the future look like?

I’d love to think that a year from now a vaccine will have been found and this will all be one great big nightmare that has been retired to the history books. We’ll still talk about it. “Remember this time last year when we couldn’t leave the house because of Coronavirus?” I imagine we’ll talk about it for years and years to come. But the world will be safe. People will be safe. At least safer than they have been for the past three months. We’ll be able to hug our friends and family without the fear that we could unknowingly make them so poorly they could end up in intensive care or worse. We won’t have to worry if somebody brushes past us in the street or leans over us in the supermarket. We won’t have to wear masks just to take a trip to the shop or get on public transport.

I’m generally quite a positive person.

I am a firm believer that this period in our lives will change us, humanity, for the better. We will value the little things and realise that the material things don’t matter half as much as we once believed they did. We will cherish the people we have in our lives, we’ll admire the nature we’re surrounded by on a much deeper level. We’ll have a greater appreciation for the things we once took for granted.

A global pandemic that has caused the world to close its doors for months is quite possibly the biggest challenge that collectively, we’ll ever face in our lifetime. At least I hope so anyway. The world probably won’t look the way we remember for a very, very, long time.

But the human race is strong, determined and stoic. We are resilient and we will adapt to the new normal, whatever that may look like, as the world opens its doors once again.