Blog Post: Thank You for Sharing Our Story - Samuel’s Fight for Medical Freedom

We are so incredibly grateful to the hosts, Aileeah & Irene, for providing us with the platform to share our journey on their podcast. It has been an emotional, difficult, and sometimes lonely road, and this episode has been a chance to bring light to the challenges we face in Samuel's fight for health and medical freedom. From the very first conversation to the heartfelt discussions that followed, the hosts not only gave us a voice but also helped amplify our message to a wider audience. In return, I wanted to offer this spot on my blog to host some additional content to go along with the podcast episode, for those momma's who want more details!

As a mother, there is nothing more important than protecting your child, and for the last several years, I’ve fought not only for Samuel’s physical health but also for his right to make informed medical choices, and for my right to make them for him. We know this...

As we were discussing what to do next, to help get him out of the hospital, I asked him “What do you want?”

He replied without hesitation:

“Take [it all] out and let whatever happens happen.

A miserable life is no life at all.”

And his voice quivered and he shut his eyes and closed out the world.

I wanted to cry with him- another dagger to my heart that I have to remind myself to not take personally, but to remember he’s speaking from a place of deep pain.

I tried to offer something of wisdom and encouragement and said that instead of him going to Jesus (he’s told me before he wants to go to Heaven where there’s no pain), let’s ask Jesus to come to him.

That He is strong when we are weak; that he can rest in Him.

And I wonder-

HOW do I make that happen?

How do I help my son see this and use this to his advantage and for his survival?

Have I failed, as his mother, to have him be this age and not have the thinking paths and patterns to get access to this strength...

Is it "saving my son" to help him live ... or to allow him to die?

and,

Is my son "saved", meaning will he for sure go to Heaven?

I woke up this morning with this new thought about a chronic issue we have been walking through. I have decided to bring this to light, asking for your prayers and insight, as I do not want to continue walking this journey alone (alone allows room for these thoughts and feelings to linger: unsure, unconfident, fearful, wishy-washy).

Whatever our decisions are, I know that I need to be making them, and standing in them, in faith (full assurance of what I hope for) and not be double minded or wishy washy. There should be no confusion. (Hebrews 11, James 1)

Yesterday, we had around our 47th monthly appointment with my son's nephrologist and his team (nutritionist, nurse, social worker). This is after about at least 36 monthly appointments (and plenty of hospitalization stays) with his previous nephrology team.

He has been dealing with FSGS (nephrotic synd...