Rudy’s World

@adnanthekaleju

This photo was taken right before we got Rudy’s formal diagnosis, mid-October last year. The second slide is a message I sent to my family on the way to the hospital meeting 👉🏼 On gathering info for this page, I went through notes on my phone from throughout last year and this was in there. It struck me as it still rings true 🙃

Harry and I had both been asked to attend the meeting at the hospital about Rudy’s results, of the huge bank of blood tests that were taken 4 months previously in the summer. So we knew it was serious news, both being permitted to attend in “Covid times” and all. It had been four months since Rudys blood tests, so a long wait for answers, and lots of speculation. Naturally we obsessed over it, day in day out we did our own heads in playing out endless “best/worst” scenarios of what might be “wrong” with him (Or might he “just catch up?”...)

Despite feeling completely heartbroken and railroaded by the diagnosis when it came, we were also acutely aware of just how smiley and HAPPY Rudy was (and still is). He started to smile at around 2 months and it changed everything so much, it lifted us up daily. This has really got us through.

His happiness is everything, and what was said in that text message still stands. Rudy is happy. We don’t see Rudy as “ill” or unwell. He just is who he is, and he is whole. For now at least, he is really healthy (he blooming glows in fact, so people tell us all the time!). Rudy’s seizures are largely under control so he has no immediate overarching health issues, just a set of needs which we will do our best to meet, always. In the same way any parent would to meet the needs of their child, regardless of circumstance. We encourage everyone to view Rudy in this light too, as whole, and happy, and ready to grow and face life and it’s challenges like everybody else. Our goals to enrich Rudy’s path and enable him achieve his maximum potential as per that message remain unchanged too. The cute smiles just really help things along 😍

#RudysWorld#diagnosis#onreflection#october2020#GeneticDisorder#Health#BabyBoy#smile#SixMonthsOld#Equality#NeuroDiversity

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