Panama 2019 Day 16: Being a Mother of a Child with Complex Needs

Friend and regular reader Randi has a daughter, now an adult living in a group home, who since birth has had complex medical needs. Given Fani’s experience, I asked Randi if she could share with us what it’s like to hear potentially serious health information about your child from one provider, only to be told shortly after “Oh no, wait, it’s all good.”

With her permission, here is Randi’s response.

It is difficult navigating the medical system and when it is your child, it becomes all- consuming. One time we received news that Jamie’s kidneys were not functioning and she would go to the top of the transplant list and receive dialysis in the interim. I remember feeling sheer panic and heartache for my tiny daughter. I did not want to have to be an “expert” in kidney disease, along with all the other medical issues that Jamie had. The lab results were incorrect and her kidneys were fine. The relief was overwhelming. I had held it together during the crisis, but I fell apart when we received the good news. There is no greater pain than receiving devastating news about your child and no greater joy than learning that she is actually going to be fine.”

Gloria and Sally and I ran into Fani on Friday morning in the Super 99 where she works. Fani was beaming, and gave us big hugs. Gloria says Fani has not slept properly since receiving the news a couple of weeks ago that Gabrielito might have further heart complications. She stayed awake watching her little boy breathe.  At least for now, that anguish is gone.

Thank you, Randi, for sharing firsthand what it’s like to mother a child with complex medical needs. You speak for Fani and many other young mothers here who try to navigate a system that is not always sympathetic to their needs and the needs of their children.

And a big shout out for Fani, who was not yet 20 when her little boy was born with Tetralogy of Fallot, who kept him alive until 18 months of age when he had corrective surgery, and who is raising a happy, smiling little boy.

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