Keep Looking


The single most important piece of information I want to share with all new parents managing their child’s rare disease is this: never stop looking for answers.

Instinct is terrestrial and we often overlook it’s eerie silhouette in favour of a safer figure. We are taught early on to forfeit our 6th sense for the logic of experts. Don’t do it. Do not default, surrender or play down what hundreds of years of survival have bred into your DNA: fight for your child’s full diagnosis.

As rare parents, we understand the personality of our child’s aetiology. We see the evolution, wrongness and the sadism that coincides with creatures like organ failure, cancer and progressive conditions. It is our perspective that must be researched, understood and called upon as complimentary to traditional medicine. Shutting out this unique knowledge source is a mistake that costs lives.

The lesson is simple: never dismiss the sophisticated understanding of your child’s medical complexity.  Keep pushing doctors. Keep advocating for that test, that procedure, that referral. Keep looking for answers to the undiagnosed. Keep asking questions. Keep reading. Keep correcting specialists. Keep watching your child. Keep listening to your gut instinct until you have the answers.

We recently got more answers not because they were discovered but because they were carved out, over time, by a tired parent.

Red’s medical constellation has grown: BOR, CKD, GERD, PDA, and now AVN. Her organs and bones are dying. The weight of your findings are far less crushing than being orphaned by the undiagnosed, misdiagnosed or under-diagnosed.

Keep looking. Keep going. Keep hoping.


2 thoughts on “Keep Looking

  1. The push is exhausting but sometimes, it can be fruitful. It was my push that saved B, why we still have her with us at 3 instead of losing her before her first Birthday. I fully believe there is always an answer, we just might not ever find it in our lives but it’s there waiting to be found. I think about you all daily and have so much love for your girls and their amazing spirits. Thank you for starting up your writing again, you get the words out that so many rare parents have but don’t know how to put together.

    • Ugh, my friend, It’s so true –I think that about Red as well. She just would not be here if I didn’t push against all the ‘she’s fine’ or ‘it’s viral’. Instinct is SO powerful. Thanks for reading and always being a support. xoxo

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