Tonight I’m exhausted. Not just physically tired out, but feeling that kind of “deep-down-to-my-bones” emotional exhaustion that comes when you’ve finally and inevitably reached breaking point. That tiredness that makes every decision nearly impossible to make, from what to cook for dinner to whether to give in and go to bed and sink into sleep before the children do. That physical exhaustion that is felt in every part of my body as an unavoidable ache that is only relieved for minutes seconds at a time and returns full-force all too soon. In the last 10 years there have been many times, almost too many to remember, when I’ve felt tired out and fed up, but tonight is the first time in a long time that it doesn’t matter what I watch, or listen to, or read, or do because whatever it is, I find myself here with tears pooling in my eyes. Earlier I sobbed, uncontrollably, without regret and in isolation, not wanting the children to stumble upon the waves of deep grief I could sense rolling off me as I curled up and let those tears flow. I’ve been pushed to this point by the shock of M’s broken leg and the overwhelming sadness of an opportunity lost, but I know in my heart that really I’m grieving the loss of yet another “normal” part of my child’s life.

When we got M’s diagnosis 3 years ago, it was a relief. After years of angst and an unwavering conviction that there was something wrong, something more than the doctors were telling us, to finally have a name to put to the root cause of his problem meant that we hadn’t made it up, weren’t imagining the health struggles he had and could hope that we would start to get some answers to the questions that were battering our every waking moment. It didn’t take long for reality to kick in and we soon realised that the diagnosis of Eosinophlic Colitis (EC) would leave us dangling and asking more questions, rather than being the solution to our problem. Mike struggled with the not-knowing and needed to find out more, to fix the situation, whilst I took the hand we’d been dealt and determined to do the best we could in difficult circumstances. I’ve tried to face up to every new challenge with a positive attitude and to encourage the family to keep plodding on, even when it feels impossible to do so.

This latest incident has shown me that even though we’ve weathered the harshest of storms and come out smiling, perhaps I haven’t allowed myself to grieve as really I’ve needed to do. I’ve not had to face the loss of my child, but I have had to survive the loss of the healthy child I thought he would be. The truth is that M will never have a life free from EGID. He will never experience a life free from pain. Neither he or G will ever regain the childhood innocence that has been taken away by chronic ill-health. He will never be medicine free and the chances are he will always have a restricted diet.

But that’s okay.

AND it’s okay for me to grieve those things.

Acknowledging those truths will help us accept them, will allow us to move on from them and will give us hope for the future; because from all those negatives have come some amazing positives, experiences and opportunities that would never have crossed our paths and a truly inspiring group of parents, now friends, who understand because of their own pain. What’s more, I’ve realised that whilst it is natural to be sad that some of my hopes and dreams for my children won’t come to fruition, it’s much more exciting to see where their lives and life experiences will take them.

Would I change the presence of EGID in our lives if I could? Of course I would. I’m a Mum and I want the best possible for my children. Life with a chronic illness is a heavy load to carry and I would do and give anything and everything to lighten that load for M and G; but I can’t. I can’t wish it away, but I can equip my children with the tools to accept and survive and do even more than just survive, but to live life to its fullest, taking every scrap of fun and joy from it that they can. My children are survivors, they are warriors and they will always be encouraged to achieve everything that they can. And along the way, we will continue to be open about EGID, about its impact on our lives and the reality of living with it day-to-day. We will raise awareness as best we can, educate the people around us and support those who find themselves facing the same battles we do because of this illness.

I am the mother of a medically complex warrior. I am an EGID Mum.