Undiagnosed, but that’s okay.
Okay, I am doing it. Today, I am going to start a blog. Why you ask? Does the world really need another blog? Probably not, but hey why should that stop me?
What will this blog be about? It will be our outlook on living life without a diagnosis. I have a great husband, an 8YO daughter who is the world’s first perfect big sister, Boo our fabulous 3YO daughter who has faced and overcome more in her short life than I ever have in mine and a crazy foolish puppy.
Boo was born after a perfectly normal pregnancy. She then spent the next week of her life in the NICU and then had subsequent admissions over the next 3 years. In the interim she acquired 14 pediatric specialists, a feeding specialist, early intervention, physical therapists, speech therapists, augmented speech therapist, occupational therapists and the perfect big sister.
The one thing Boo has not acquired is an official diagnosis. Oh, the doctors all agree she has an unknown genetic abnormality which may have led to her global developmental delay, reflux, laryngomalacia, tethered spinal cord, ‘trivial’ PVD and dysmorphic features. However with all their degrees combined, not one specialist has been able to able to tell us what is ‘wrong’ with our child and what it means for her future.
So this blog will be about how Boo, her perfect sister, crazy puppy and loving parents navigate life without a diagnosis. I hope you enjoy the journey!
Good to find another family navigating the system without a (complete in our case) diagnosis – I've also linked up with a UK organisation called SWAN (Syndromes without a name) which I find very helpful and supportive. Wishing you the best of luck and lots of joy along the way x
Thanks for the tip about SWAN. I am constantly amazed that with all the knowledge in the universe Boo is considered an enigma.
Reading your story really gives me perspective. A friend (who's also a SLP) told us right after Pacey was born that we'd “won the diagnosis jackpot.” It was an insensitive way of putting it, especially in that moment, but he was right. I forget how lucky we are to be dealing with something that is relatively well studied and understood. I generally don't have to fight for what Pacey needs to keep on keeping on. I really admire you for sharing your story. I'd say I admire you for all you do for Boo (and I do) but I know as well as any other mom with a special kid, it's just what you do.
Thank you. I cannot imagine how you kept your composure when some one said that you won the jackpot!
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