Portraits of Life, Love and Legacy through Pediatric Palliative Care

we came in the hospital with our three and a half year olds normal typical child and we're leaving the hospital into this world of completely unknown my world was shattered and so I'm in a hospital room and I'm just so angry and just come in and you're gonna scream it how good is heaven because when you have something that catastrophic happen to you you grieve for the child and the things that will never happen I know for me that's as a mom and that's what's been so hard is knowing the Heather won't go to college and he won't get married I know won't have kids and dealing with that is hard but they help they're like a warm blanket around your baby no matter what your baby's going through there they are they're surrounding that child and every child is treated like an individual they're caring for our child and for us and helping us live life every day the best that we can palliative care is my go-to team you know you're not just a number you mean something to him nosotros anna y da de casa Tolan maneras possibles nosotros somos tenido ayuda psychological a lead economica apoyo spiritual' just when you think that that they've done everything that they can do and that they have serviced you in every way they go above and beyond to do something that you just you just can't believe palliative care is a discipline it's a medical specialty it is board-certified but what we do is so intimate that families have to let us into pieces and parts of their lives that nobody what other family members get to see and that sacred relationship and agreement that we make with this family that we are going to be your palliative care professional and walk this journey with you is unique in medicine Kassie has a lot of personality once you get the newer she's not easy to understand if you're a stranger coming off the street but she is ornery once you get the newer we have 20 hours of Nursing in our house a day and we have no private life but that's just how it is hey she's a big part of our family and I think if anything ever happened to a type in Jersey there'd be a lot missing in palliative care as the American Academy of Pediatrics says we focus on adding life to the child's years not just adding years to the child's life you know things can always happen and that is one of the things that dr. friebert and the team really focus on like you could go out and get killed in a crazy accident but would you not live life because you might and that's really helped us when we were struggling through the really hard times to really embrace who Tyler is and where we are now I didn't want whatever time Noah had to be filled with sadness I just wanted him to have a happy life I ever wondered it was going to be palliative care took away a lot of the stress out of the situation and that's what they told me we don't want you to stress about it we just want you to enjoy the time with him I've learned that don't let life get you down and live life to the fullest we're not here by accident they got her for a reason and they are here to do something and it is sometimes accomplished in minutes and sometimes accomplished in days but those days are as sacred to those parents as the years are at any other parent going through this process with Morgan it was like water started to taste better air started to smell better was it was like a brand-new clarity on life and things that no were they used to seem so big to me we're now small in comparison there's so much that you gain there's a there's a fight in your spirit that you gain it says no matter what we face we have a resolve that says we're going to get through it and it wouldn't have been there if Morgan hadn't hadn't shown us you you you

Channel: NEOMED | Northeast Ohio Medical University

Views: 171,821

Keywords: pediatric, documentary, palliative care

Id: sikOe1RR3KA

Length: 5min 39sec (339 seconds)

Published: Thu Nov 08 2012