Ben and Allison, parents of Julia (7) and Wilbur (2) and Beckett and Clementine who died at age 3 and 2 respectively from a rare metabolic acidosis disorder.
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It's helpful to ask questions about end-of-life. You can never have too much information. It is good to have a plan.
Courageous Stories: Soul Mates, A Love Story
They were like an old couple: The Gauvin sibling love story.
We believed we could have one more child.
Julia grew up quickly, in the NICU, in waiting rooms.
Parents like us, we're all on this island of misfit toys
I trust parents more than professionals when it's the home life
Slowly realizing there is no way we're going to beat this thing.
Photos help remind me that we made the right choice.
Two children with rare disease in one family; Two different deaths.
Death of a sibling from illness: We let Julia, the big sister, see the dead body.
Because we got to do it twice, we learned what we wanted from the first time. It was so draining to carry other people's sadness.
I did feel a sense of relief after the kids died. They were so sick.
Answering the question, "How many kids do you have?"
You don't owe anyone an explanation and you don't have to feel good every day.
How I've been processing my grief.
Palliative Care made it possible for us to go home and live.
So much good in the little bit we had. We did the best we could.
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