On Breakthroughs, Breaths, and the Balance Between Joy and Grief

Wow, I feel like I haven't been on here and spoken to you guys for so long. As you know, life has been crazy but I'm back with a brand-new post and something that I'm sure you are going to love and resonate with.

As I reflect back to this very moment (where I was soaking in that 40 degree heat with my thoughts) I can still feel that deep sense of thankfulness. For 15 years, my days have been defined by medical needs & admin, caregiving schedules, endless hospital stays and the unspoken question: “Will today be manageable?”.

However, over the week I allowed myself to feel something else entirely, joy, gratitude, and also the ache of what I’ve shouldered for so long.

I am still learning so much about my role of a caregiver. Amber is truly my greatest teacher. If you’re a parent or caregiver to a child or loved one with medical or developmental needs, you might recognise this paradox: happiness can sit right alongside heartbreak. That is not a failure. It is a human truth and I think its about time we normalise talking about this.

I struggle so much with balancing this feeling of joy and grief, so whilst away I wrote down the following reflections and gentle reminders I’m carrying with me which really helped. I would like to share it with you too in the hope that they support you just as much.

✨Joy and grief can coexist

The moments that feel deeply good don’t erase the hard parts of our story. They coexist, even reinforce each other. Allow yourself to enjoy and appreciate joy without guilt, and name the grief without letting it overshadow the present.

✨Value of choosing rest, not just resilience

Resilience isn’t about never feeling tired; it’s about choosing rest when you can. Even small pockets of rest, two extra minutes of quiet, a slow walk, a decaf coffee. Anything to recharge your nervous system.

✨The importance of boundary-setting

You deserve space to be both caregiver and person. Boundary-setting isn’t selfish; it’s sustainability.

✨Redefining “normal” for our families

The word “normal” can be a trap. Every family has a unique rhythm, including medical, school, and social commitments. What is my normal may not be your normal and that is OK.

As a coping mechanism, I have fallen in love with our 'normal' - a life that isnt perfect but feels joyful and whole to us, as it is. People may not always understand this and too is OK!!

✨The power of storytelling without self-sacrifice

Your story has value for others. Parents who feel alone, siblings seeking understanding, clinicians who want to hear real-life experiences. Share lessons learned, not just the hardships. You never know who is listening or reading. They may just need it that day.

✨Practical strategies I’m taking into action

Build a flexible support network: identify people you can lean on for different needs (emergency care, household tasks, emotional support) and practice a quick, specific plan with them. I did this with my mum before going away. I felt so relaxed because I knew everything was organised and the support both Amber & I needed was there.

Practice anticipatory planning: write down a “two-week survival plan” for big/small trips, medication schedules, list of contacts of all medical professionals, meal plans, backup devices, and clear communication scripts for care teams.

Putting everything into place before I went away helped me massively and its something that I will continue to do even more so when im back. Being two steps ahead of everything brings so much calm and clarity. It is something I highly recommend you do to ease stress and pressure.

✨Embracing gratitude as a practice, not a trophy

Gratitude can be a counterbalance to pressure. It doesn’t erase the pain; it gives you space to notice what’s still good. This makes makes me focus on the glass half full rather than the part that is empty.

A daily gratitude ritual: list three things you’re grateful for today, no matter how small.

So....

to you, the parent who reads this and wonders how to balance love with limits, I see you. You are choosing to live in the tension between what is and what can be. That is strength. Not loud, not flashy, but real, steady, and contagious.

A message to anyone listening who’s in the middle of their own storm. Your feelings are valid. Your plans matter. Your care for others begins with caring for yourself.

If you’re navigating a long-term health journey with a loved one, you’re not behind. You’re exactly where you’re meant to be. Learning, adapting, and showing up with courage.

My love always,

Speak soon x