Today I ask that if you have a wish to spare, a prayer to offer or even some good will to share – please send it to Xavier and his family.
Tomorrow will mark one year since our friends Jackie and Nate took Xavier to CHOP for his Fontan heart surgery. Since that day Jackie and Nate have spent almost every day at CHOP watching as their beautiful boy fights his way back.
This family - today they are still in that Hospital room- praying, waiting, hoping, wishing and working alongside Xavier’s team to bring him home.
This family has had to hand their baby boy off to doctors and nurses more times than anyone should – kissing him without the certainty of what would happen next. They have prayed, hoped and held on to their faith for so many years – since the day he was born and didn’t know how long his tiny broken heart would keep him in this world. But this boy’s broken heart holds more strength than an army – he continues to fight. He continues to inspire everyone who knows him.
Tomorrow will mark one year since our friends Jackie and Nate took Xavier to CHOP for his Fontan heart surgery. Since that day Jackie and Nate have spent almost every day at CHOP watching as their beautiful boy fights his way back.
This family - today they are still in that Hospital room- praying, waiting, hoping, wishing and working alongside Xavier’s team to bring him home.
This family has had to hand their baby boy off to doctors and nurses more times than anyone should – kissing him without the certainty of what would happen next. They have prayed, hoped and held on to their faith for so many years – since the day he was born and didn’t know how long his tiny broken heart would keep him in this world. But this boy’s broken heart holds more strength than an army – he continues to fight. He continues to inspire everyone who knows him.
This family – they have celebrated Christmas and anniversaries, birthdays and seasons changing in that Hospital room. They have seen their family torn between their home and the Hospital. With incredible support all around Xavier’s little sister has been surrounded by love even as her family is split between two worlds.
This family. They fight for him when he cannot fight for himself. Their love is unconditional. They are brave. They are strong.
But they are also sometimes broken. How can they not be as they watch their little boy fight harder than any child should ever have to fight. They miss their family. They miss his smile. They cry and pray and wish and hope and beg for his pain to end and for his childhood to begin again.
I have not walked in their shoes. I can sympathize as a mom. But cannot empathize as heart mom – I have not “been there”. Some of their closest friends are the heart community around them who have walked this path before them and now with them. It is a community that continues to lift them up, and hold them up when they can no longer stand.
CHOP, and the nurses and doctors whose names and smiles they have grown to know as well as their own, is the place they have had to call a second home. It is the place that continues to give Xavier hope for a childhood again. And he so deserves that childhood. One filled with apple picking on a glorious fall day like today, summer days at the pool and first days of school.
This is not a path they chose but all of us who have walked it with them, or even just lent a shoulder, a hand or a smile as they made their way, we know they are doing everything they can to make sure Xavier never walks this path alone.
As my birthday inches closer I am reminded of the same wish I made last year – for Xavier to not have to fight so hard and for his bruised body and soul to be healed so that he can be given back a life filled with love and laughter and the joys he deserves.
My heart breaks for them but at the same time is filled with love and admiration for their own love and strength, no matter how battered they may feel it has been at times.
Please say a prayer, send a wish, take a moment. This is not fair
This family. They fight for him when he cannot fight for himself. Their love is unconditional. They are brave. They are strong.
But they are also sometimes broken. How can they not be as they watch their little boy fight harder than any child should ever have to fight. They miss their family. They miss his smile. They cry and pray and wish and hope and beg for his pain to end and for his childhood to begin again.
I have not walked in their shoes. I can sympathize as a mom. But cannot empathize as heart mom – I have not “been there”. Some of their closest friends are the heart community around them who have walked this path before them and now with them. It is a community that continues to lift them up, and hold them up when they can no longer stand.
CHOP, and the nurses and doctors whose names and smiles they have grown to know as well as their own, is the place they have had to call a second home. It is the place that continues to give Xavier hope for a childhood again. And he so deserves that childhood. One filled with apple picking on a glorious fall day like today, summer days at the pool and first days of school.
This is not a path they chose but all of us who have walked it with them, or even just lent a shoulder, a hand or a smile as they made their way, we know they are doing everything they can to make sure Xavier never walks this path alone.
As my birthday inches closer I am reminded of the same wish I made last year – for Xavier to not have to fight so hard and for his bruised body and soul to be healed so that he can be given back a life filled with love and laughter and the joys he deserves.
My heart breaks for them but at the same time is filled with love and admiration for their own love and strength, no matter how battered they may feel it has been at times.
Please say a prayer, send a wish, take a moment. This is not fair
