Natalie’s mother describes how the Pediatric Palliative Care Network came into her life at a very dark time. She welcomed support for herself and her three daughters. She took advantage of all the services offered by the Pediatric Palliative Care Team: volunteers, music, chaplaincy and more.
Transcript:
Everyone has a journey, sometimes life’s direction is not always clear and we need support to guide us. I couldn’t find the light, but the Pediatric Palliative Care Program brought the light back into our home which gave us hope.
There are many people whom I am very grateful for their time and who have made the Pedi Pal program a very important service to my family. I am thankful for Natalie’s team. This program improved our quality life for Natalie, Natasha, Angelina and of course me. I think Pedi Pal is a very important service to families with kids who have special needs, and are medically complex.
Natalie’s team is very flexible, comprehensive and appropriate for the age of my girls and provides a variety of services and skills for the whole family.
Being overwhelmed by our family’s situation the Pedi Pal team provided a list of available services which best fit the needs of our family.
I am a married, single mother.
The Chaplain helped me care for my spiritual needs. Techniques on relaxation helped me to heal my body mind and spirit which brought me peace and helped me to be a better mom.
The Music therapist brought music into the lives of all my children and introduced various instruments. They sang songs which inspired the musician within them. They taught them how to play and allowed them to feel and touch the instruments. The smiles on their faces say it all.
A volunteer visited our home to play with the children which helped entertain the kids so that mommy can do other things she would normally have no time for.
She introduced various art projects and used her own resources to keep the children occupied. She made my girls feel special and my kids love her. She never seemed to rush off and was like a caring older sister.
The Social Worker helped me find resources for our family. I had so many questions. She listened to my concerns and took the time to guide me with her skills. She is always thinking about the whole family and I trust her.
Natalie has a mitochondria disease, Immune Deficiency, GERD, asthma, developmental delay, hypotonia type 2, etc. She has infusion every other week. Mitochondria is a genetic progressive disease but I have a hope one day they can find a cure.