A part of this journey with Azariah, which I’ve found incredibly difficult, is the isolation. Being a sociable person, I love, or rather loved, spending time with people whenever I could!

Now, every social and work engagement has to be assessed – where is it? Who will be there? Are we able to cancel if someone is going to be ill on the day? It is exhausting!

If we accept an invitation, then Marvin and I become hyper vigilant, like lions prowling round protecting our cubs. Any sign of someone being ill, then we are gone. This is much harder in a work environment, but we are still as cautious and careful as we can be.

It is simply not worth it! The consequences of Azariah catching someone’s simple everyday cold could be life threatening. Do I want to risk my child’s health and ultimately life just to be wherever it is? The answer is, of course, NO!

We know people who are normally healthy can have a cold or other viruses and still function, go to work or socialise and we can’t and don’t want to stop those around us doing what they need to do but we just won’t be there.

I love being organised, planned, and prepared, but this way of living doesn’t allow for those things. Everything has to be held lightly, with the possibility, or rather liklihood, that they will either be cancelled or our acceptance of the invitation will be cancelled. And I know this because I’ve made plans numerous times which have had to be cancelled on the day. Disappointing.

However, we still love to be invited and we appreciate even more when these things are taken into account, that people invited understand how incredibly important this is to us, that those attending know that it’s important to let us know if they will be ill. It can then be our decision to make.

Most of the time, we do want to come, we want to say yes, but we always have to think, has this issue really been acknowledged, understood, and appreciated? Has the seriousness for Azariah been taken into account? Some events we’ve been to, people have been told if they are unwell, then they can’t come, and that is super appreciated 💯 that really does show understanding and take into account!

We don’t even go to church in person, I can’t even remember when we last did. That’s hard! We still watch every Sunday morning but miss that fellowship more than you can know.

I’m also incredibly grateful for those invitations for those messages that just reach out to show us that you haven’t forgotten about us because most days, that’s how I feel. My mental health and emotional health have and still are taking an absolute battering, and this is a big part of it!

I look forward to the day that this part of the journey is over. That Azariah doesn’t need to be isolated away and can enjoy his life to the full. Until then, we will protect him at all costs ❤️

Amber x