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019 Hey guys, I’m back this week with another guest episode. I’m talking with Robin MacMillan. She was such a joy and I’m glad I helped share her story.
Robin has two older children and her son Robbie who is 17. She didn’t think anything was different about her son when he was a baby, but was urged by a home nurse to have him checked out. Turns out, he was only the second recorded case of complete deletion of chromosome 9. He also suffers from a couple other prognosis, including a seizure disorder. He was nonverbal for a long time.
The biggest take away from Robin is her view on his diagnosis. There was no name and no actual picture of what his life would be like, she says they’d push until they came up against resistance with him and then would try another thing. It made her feel powerful not having his life and diagnosis put him in some predetermined “box”.
Robin also talks about how it is hard to find support and care for mothers. She works closely with fellow moms and runs gatherings/support groups. She is currently starting her own podcast to share about her journey for other parents and families to relate to.
Connect with Robin:
IG: https://instagram.com/robinclason1
Podcast: http://www.samebutdifferentstrong.com/
