Natalie
Mother of Emma (23), Avery (21) and Lyla (18).
Emma has been medically complex from birth.
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The system and world is really not set up for these children to become adults.
It takes work to find a provider who is willing and has the expertise
What does it take to support a child transitioning to adulthood? You need to care enough to take the time to understand, to communicate with other physicians, to do paperwork; to figure it out
Transitioning to Adulthood: Sometimes a new provider’s perspective can be helpful.
Saying no to spinal surgery: I couldn't imagine her going through a major surgery like that
What does a “good day” look like? Emma goes to VOTE!
Every time we achieved an idea we wanted to pursue, it gave us more strength to do the next one. The memory of what you were able to achieve is what we actually remember.