Nicky
Nicky, mother of Janessa (age), Isaiah (13) and Avery (9). Isaiah and Avery have mitochondrial disease.
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I try to prepare but there’s just not going to be any preparation.
Spinal Fusion Surgery: The most difficult decision I've have to make
It was like this little secret society.
Palliative Care Focuses on All the Living
We’re normal people and we experience normal things.
I had to learn to live in the moment and not look at the future.
I’m feeling trapped. But we’re getting closer to that future.
I saw a counselor.
I’ve learned to take the breaks I need.
It’s not fair and I’m at that point where I’m not sure I believe.
Medical Orders/MOLST: Making the Decision Together
I will have peace knowing I’ve done everything as his mom.
I want providers to know that there needs to be some flexibility.
Medical Orders/MOLST: It was very emotional for me.
Always hoping we can make it a little bit better.
In our model we fall in love with your kids, and are a continuity factor.
Tracheostomy for my son?
Spinal surgery for my son? The most difficult decision I’ve had to make.
Isaiah’s illness almost got us divorced.
I always want parents to know they have a choice
Decision-Making, Palliative Care: Please remind me what’s best for him.
Decision-Making, Interventions, Palliative Care: How you balance hope in the reality.
Something always comes up. You do it again and again and again.
Now they say, “Whatever you say, Mom.”