17/10/2026
I don't think there's anything that can prepare you for when your child's poorly and you're completely helpless as a bystander.
You have to try and remain calm, collected and hold it together... because they're terrified enough their body's behaving in ways they can't control... whilst inside you feel like you're breaking apart!
The level of respect I have for parents & carers who deal with medical complications on a daily basis is immeasurable!
You want to take away all of their pain, reassure them it's all normal and ok, but you're terrified what's happening to their little body and sometimes answers and solutions aren't forth coming. Despite having every test known to man.
🥴 I wouldn't want anyone to experience what we've experienced as a family the last 48 hours.
Seizures, fear, cries for help, desperation for respite and sleep, but sheer terror at the thought of relaxing so much there will be a repeat of spasms and pain.
I can't thank my friends enough for the messages, the love, the prayers, the offers of chocolate/clean clothes/support for me to catch five minutes for myself or further reassurance for my children as they navigate it all.
I also can't express the relief when my son finally fell into a deep sleep without panic, or the joy at hearing him laugh this morning after he slept for the first time in nearly 40 hours.
I know I need to support other families going through this trauma. The NHS is in crisis point and the resources available just aren't enough to prevent things escalating. I don't know what that looks like yet, but I know taking action is the way I process things best.
If you're going through challenges right now, I need you to know you're not on your own and whatever is going on, there will be ways we can come together as a village to help.
Mini rant over. All is ok. Sharing for awareness, not sympathy... because silence is just not an option for me ❤️