Life in the Parents' Eyes

When we first heard the diagnosis, time stopped. The doctor's words seemed to come from somewhere far away – Tetralogy of Fallot with Absent Pulmonary Valve, 22q11.2 deletion syndrome. Medical terms that would soon become as familiar as our own names, but in that moment felt like a foreign language describing someone else's child.

We held hands in the quiet of the consultation room, tears streaming down our faces, and made a silent pact. We would face this together. We would be strong for Illyana, for each other, and for the journey ahead.

The Early Days

The NICU became our second home. We learned to read monitors, to celebrate the smallest improvements in oxygen levels, to find hope in the steady beep of a heart monitor. We learned to live moment by moment, because thinking too far ahead was overwhelming.

People often ask us how we do it. The truth is, we don't always feel like we're “doing it.” Some days we're just surviving. Some days we fall apart. But then Illyana looks at us with those bright eyes, and we find the strength to keep going.

Finding Faith in the Storm

Our faith has been tested in ways we never imagined. There have been moments of doubt, of anger, of asking “why us?” But there have also been moments of profound peace, of feeling held by something greater than ourselves.

We've seen miracles – small ones and big ones. Doctors puzzled by unexpectedly good results. Nurses going above and beyond. Strangers becoming friends, praying for a child they've never met. We've learned that miracles often come in the form of human kindness.

What We've Learned

This journey has changed us. It's taught us patience we didn't know we had. It's taught us to cherish every moment, every milestone, no matter how small. A smile, a laugh, a peaceful sleep – these are victories.

We've learned to accept help, even when it's hard. We've learned that it's okay not to be okay. We've learned that vulnerability isn't weakness – it's the doorway to connection and support.

Most importantly, we've learned that love is bigger than fear. Every day we choose love – for Illyana, for each other, for this beautiful, difficult, miraculous life we've been given.

To Other Parents

If you're reading this and walking a similar path, we want you to know: you are not alone. Your feelings – all of them – are valid. The fear, the hope, the exhaustion, the love that sometimes feels too big to contain.

It's okay to grieve the journey you expected while learning to embrace the one you've been given. It's okay to have bad days. It's okay to ask for help. It's okay to celebrate the small things.

Your child chose you. And in our experience, these warrior children have a way of teaching their parents far more than we could ever teach them.