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Photo: Sue Adler

Meet Heather

Hello and welcome to my little corner of the internet where I write mostly about raising a child with a disability. That’s me, Heather, with my hunky husband Garreth whom I met in a castle in Ireland. True story. We are a very ordinary couple living an extraordinary life. I love my husband truly, madly, deeply and he pinky swears that he loves me too. Writing has become my passion as I hope to educate and encourage others. Mostly, it’s cheaper than therapy and helps me stop to appreciate this wonderful, consuming, victorious, and challenging journey I’m on in Disability World.

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Photo: Sue Adler

This is Liam

Liam loves to read and run. Life as the sibling of a child with a disability is just his normal. Being a first born, Liam has always been incredibly helpful and responsible. For example, in a time of desperation or insanity I allowed two year old Liam to g-tube feed his brother. Liam has also helped me pick out medical equipment on numerous occasions. We get each other because he’s very witty. Liam published an article in the  Pediatric Nursing Journal about being Aidan’s brother. It’s well worth the read.

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Photo: Sue Adler

And here’s Aidan with his big bro

Aidan is the only extrovert in our introverted little family. As soon as he meets you he will bring you in for a little head to head or nose to nose lovin’. His giggle is infectious. Aidan spent the first three months of his life in the hospital. The multi-post story of his time in the NICU is told here. He wasn’t eating or breathing well on his own. His wonderful medical team tested him for everything under the sun. Finally, he was sent home without a diagnosis but with a g-tube and oxygen. Aidan has low muscle tone and a significant developmental disability. Through love and hard work he worked himself off his oxygen and g-tube and has made continual progress. Aidan has also been diagnosed with Epilepsy and has failed many medications. His seizures have been the scariest part of his medical life. Though Aidan is non-verbal he has plenty to say. He has successfully learned how to use the Speak for Yourself communication app despite his fine motor challenges. With it he can get his needs met, tell us how he feels, and send text messages to family. Though he walks a limited distance with assistance, Aidan uses a power wheelchair outside and manual wheelchair inside for independent mobility. His wheels have given him access to all the things in the home that he joyfully throws on the floor or drives into his own space.

We had Aidan’s whole exome sequenced when he turned 13 and found out that he has two de novo mutations on his PURA gene that may be the cause of his disability, though a great deal more research is needed. If you know anything about the PURA gene, we would  especially love to hear from you.

 

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So what do I write about here? Well, first of all, I usually write in my PJs…. just thought you should know.

I’ve written specifically to parents who haven’t ventured into Disability World and those who have.

Sometimes I get snarky and sometimes I wax poetic.

I have my emotional moments and my righteous anger moments too.

I try to stay informed and share information about seizures and medical marijuana.

I’ve spent a day in Aidan’s wheelchair and a day without my voice, both in order to see the world from his perspective.

Occasionally I write about my marriage and I never want to forget about Liam because he is an important part of this family.

We also had a crazy wonderful adventure that entailed our community coming together to build an accessible addition to our house for Aidan. It was crucial to him to have a safe bathroom to use. You can see the video of the project and my thank-you here. It was an experience that changed our lives.

I hope you’ll join us for our journey.

I would love to hear from you.

Heather

 

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