When struggles weigh you down, when you lack sleep and life feels like a constant battle, it’s impossible to see the positives shining through the shadows.

Last night, I was gifted the ultimate dream for a mum – nope, not Ryan Gosling – but a night on my own in a hotel room. Just me, the TV, dinner in my room and no children clambering on me and making demands.

It’s given me a little bit of space to think and a bit of time to write – again, it’s been about a month since I posted anything. Sorry about that.

I’m not going to play things down – life is still really, really hard. Both children need so much from us all the time and they often see each other as a threat to our attention. We are constantly tending to one or both children or trying our best toddler level diplomacy skills to explain why mummy can’t hold a shreddie, a bottle of juice, a fruit pouch, the remote control, while feeding a one year old and cuddling a three year old all at once.

It is non stop.

Except for this morning when I have quiet and calm and my body is left alone.

Perhaps our expectations were too great but Stewart and I are still desperately exhausted. And that’s with Woody now back to his usual hours at nursery. We are both working full time and trying to do nice family things at the weekends. Our relationship has borne the brunt of this relentlessness. We recognise it but haven’t found a proper way to fix it yet.

However – we have started to feel gratitude for the good things and that sometimes recharges us enough to persevere.

Woody is enjoying nursery so much. He has progressed a lot since going back in terms of relationships, emotional regulation, ability to play, speech and physical coordination.

He still has a tendency to clench up and grit teeth when he’s overly frustrated or excited and sometimes this results in him pinching or pulling hair, etc. He doesn’t mean it, he just hasn’t got the ability to regulate the surge of feeling at that time. However, we have to be careful when he’s feeling like that around Bobbie as he often pulls her hair in these instances. Interestingly, he doesn’t do this at nursery, as far as we know. So there is a distinction with his behaviour at home and at nursery, showing a degree of awareness of social rules.

Bobbie is just about walking now and keen to explore and climb everywhere. She is a very helpful reminder for us that the difference in learning between her and her brother are nothing to do with what we have or haven’t done. We now know so much about Woody’s body and brain and it explains so much.

But, the joy in watching them both learn (or re-learn) is lovely. Woody now has his NG tube out and we have started taking him swimming again. After six months out of the pool, we expected him to be a bit fearful but he couldn’t wait to get in, splash about, go underwater, blow bubbles, etc. He couldn’t get enough and it was a pleasure to see him so happy and unbelievably confident. He’s really surprised us.

Even just seeing his face without the NG tube, no more syringes and PH strips – as these things fall away, we are closer to “normal” life.

We’re starting to accept that we will always have to consider Woody’s specific needs and abilities when it comes to what he can do. I don’t even know what I mean by this yet but I imagine, he may always be a bit different to his peers. But as he rediscovers the things that make him happy and confident, he again becomes the boy that he has always been – but who we were worried might be lost forever.

Thank goodness, he is still there. The exact same boy.

Gratitude is a very powerful thing. I’m grateful for many things including:

• My husband
• My children
• Our families
• Our friends
• Secure jobs
• Woody’s slow but clear recovery
• An excellent nursery
• A wonderful childminder
• A lovely home
• Excellent medical care
• The ability to advocate for our children

Something else that powers my gratitude is my job. I see exhausted families come and go all the time at Ronald McDonald House. They put on a brave face when they see us – I recognise it because I used to use it. But underneath, they are traumatised, desperately worried, far from home, tired, hungry, confused and lost.

Every day at work is a reminder that right now, that isn’t me. It makes me grateful and also motivates me to do whatever I can to make life even a tiny bit easier for these families.

As time passes, it’s easy to forget quite how awful hospital life is when your child is unwell. So I re-read earlier posts in this blog the other day and it all came back to me. The absolute anguish of every minute. I felt it in my heart and all the way to my fingertips. I don’t want to forget the severity of that feeling because I don’t want to lose sight of how much better life is now.