Saving Samuel: Questions of Faith & Medical Interventions

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 syndrome) since 2014. He was a healthy 6 year old boy when this suddenly appeared in our lives. (You can watch a cute video of him at age 4 at the bottom of this post.)

He is now about to turn 14 in March 2022.

Over seven years  of his life have involved

• swelling,
• IV's,
• monthly lab draws for years,
• long hospital stays,
• isolation in hospitals,
• gobs of pills daily forced to take (some with every time he eats),
• daily shots,
• dietary restrictions and changes,
• trips to new doctors for their opinion and help,
• compliance using fancy equipment that has the promise of helping,
• random rashes that no one can explain or help with,
• crazy bowel routines and issues,
• not able to freely bath or shower, or swim,
• daily/weekly dressing changes,
• multiple surgeries,
• a synthetic piece of equipment attached to his body,
• night-time dialysis with discomfort, noises, and sleep interruptions for years,
• emotional struggles with sensory and social situations,
• meeting and discussing unwanted conversations with multiple strangers and "professionals" who are supposed to help,
• knowing that your life is costing your family a lot of money and being concerned about that,
• not being able to maintain childhood friendships and have fun around other peers due to constant disconnection and life disruptions,
• and the rollercoaster of standing in faith for healing while walking out the pain and suffering of disease.

That list is not including the other issues in our family that have impacted his physical and emotional well-being:

• his older sister being diagnosed with Type 1 Diabetes and his concern about that daily issue,
• his dad being paralyzed when he was just 15 months old and his frustrations with that handicap in addition to our needing to separate from him in 2018,
• my own personal emotional and mental health issues that most likely impact him,
• etc.

I share all this to help you get a better background before making your decision or judgements on what you believe is best for Samuel, or what you think you would do in our shoes.

I am also hoping your compassion, or empathy, will not cloud your moral and spiritual positions if they are rooted in God's Word and your living experiences with the Bible.

What is the Truth here?

What are the "next right steps" to do?

If kidney transplant was always the prognosis and plan from his medical team, then this should never have gotten to this point - with him being 13 years old and refusing to be "motivated to receive and take care of a donor's kidney".

There is documented negligence on both of our medical team's part;  Samuel and I also have not been perfect in managing all the requirements of this diagnosis either. The neglect is not my main priority or concern; how to walk this out, from here, is.

As a believer, I believe the Word when children are told to obey their parents so they can have a long life and that it will go well with them. 

I believe Kenneth & Gloria Copeland's teachings on living long & strong. (If you have not spent considerable time hearing and reading their teachings on this, do not think you can dispute them; they are built on the Scriptures and with many real and current testimonies.)

There are other Biblically based teachers who have helped me understand God's will when it comes to healing and health. In addition, I have witnessed our own testimonies of healing as we have seen God do amazing things for my own health and our family's after intentional prayers, petitions, fasting, and exercising faith.

There is no doubt it is a promise, it is real, and it is accessible. My current struggles lie in whether or not we can and will be able to attain it, achieve it, receive it, dictate when it happens and for whom... every single member of our family is standing for healing from something significant at the moment!

In addition, how do I access it for my child who does not currently want to live in a life filled with pain and uncertainty and is willing to sabotage attempts to get it through physical medical means?

Yesterday, at our appointment, the doctor once again asked him if he was willing to get the transplant (we both have been "worked up" and I am a match as his donor). The doctor tried to spend ten minutes listing out the benefits of receiving his mom's kidney:

• nearly a guarantee it would get him through his teens and twenties
• possible to get him through his life without another transplant if he takes really good care of his health and that kidney 
• no more daily/weekly shots (with the exception of some more growth hormone after)
• no more pills with meals
• a lot less pills daily (with the exception he still needs to take anti-rejection meds)
• can eat what he wants (no more phosphorous restrictions)
• can swim
• can travel without his machine
• can sleep without being hooked up to the machine

Nope. Samuel still maintained he was not interested in another appointment to tell the transplant team social worker that he was "motivated to get a new kidney and would take the meds daily afterwards to take care of it".

(The doctor failed to bring up that there was no guarantee that the things he mentioned would actually happen. With FSGS, it can come back and attack the new kidney and cause a whole new set of  challenges and medical procedures. From my research, this occurs in about 50% of cases. No one has a cure, or the known cause, for this condition. This is one reason why I don't go all in when it comes to trying to convince Samuel he should get this transplant - because, I would be lying if I told him it would improve his quality of life if it does not.)

The doctor maintained that if he was refusing at age 3, they would do it anyway, but since he is 13, they will not; even after I explained that his counselor puts him at an emotional age of around 8.

After the social worker invited me to speak up and share with the doctor the points I had told him earlier, I tried to explain my frustration with the doctor dropping so many balls in this process. He just made excuses and dismissed what I said. 

Samuel went from sitting up and engaging in the conversation, to reminding me that I was getting agitated, and then curled up in a ball in his chair with his head on my lap and went silent.

The doctor advocated again for me to start Samuel on Zoloft to see if it would help.

Backstory: A few months ago, the doctor had called CPS a few months ago as a way to try to force me to medicate Samuel with Zoloft in hopes he will "change his mind". I made an appointment with our over-educated pediatrician (medical, functional, and homeopathic degrees), and she gave me the prescription to hold and use if needed while having us start a homeopathic that can help rebalance some of the things internally that may be playing a part in his rigid-thinking, depression, OCD tendencies, anxiety, or whatever label can be assigned to him based on the symptoms he exhibits.

We have been taking the homeopath for 3-4 weeks and have seen amazing differences in his behavior and ability to rebound in hard emotional spots. I shared this with the doctor, and he maintained to add in Zoloft to see if it helps.

Will medicating someone change their core beliefs about life and death? I don't think so.

Is it right to medicate your child as a way to manipulate them to make a life altering decision that they have to carry and maintain the rest of their life - if it was possible? 

At first, I have believed that my way is the right way. 

That my job is to protect my son and do everything I can to SAVE HIS LIFE!

That I have to work my faith and teach him faith so that we can demolish this sickness the enemy has placed on him as another attempt to destroy our family, our legacy, our witness for Christ and the power we have in Him.

Once I open up and share more of my story, you may understand this more.

But then, there was this comment my son made yesterday after we left and I stated:

"You can't choose to just die. No one does that."

He replied, "Because no one has my disease.

Because it's gonna be much better in heaven, from what I hear.

So why slow down the process of getting there?

I can enjoy life now, but no matter how much I enjoy it, 

it's always gonna be better there."

Is this the enemy, or is this his faith and his sound mind?

Is this suicidal ideation (SSI), or is it him walking out the assurance for the hope HE has?

And if Samuel is honoring his faith by walking this out without further medical interventions, who am I (or the medical establishment) to change the trajectory of how HE chooses to live or die?

After all, the current medical establishment has now put it in his hands to decide.

What's hard for me to predict and foresee is how this will play out, because if his dialysis does start to fail, even if I was at peace with it, I do not think I will be allowed to "let him go".

(His doctor has repeatedly told me that patients should not be on peritoneal dialysis more than five years because it starts to fail and then the patients get too sick to transplant; Samuel just passed four.)

He will be subjected to more medical "life-saving" treatments which will most likely cause him more pain and suffering -which will continue to fuel his belief that life with Jesus in Heaven is what he desires.

What do I do?

I am left with praying for God to speak to his heart.

For God to reveal His assignments ("good works" Eph 2:10) on Samuel's life.

For God to miraculously heal him and save both of us from these decisions.

For God to step in and step up in this hard place.

Will you please pray these things with me?

Please feel welcome to send any faith-filled, Scriptural based, encouragement to us at my email. I will print and bind them for all of us to take to the Lord and continue to seek His will and His ways in this. 

I believe: we have come too far, and seen too much, to let the enemy take my son by his own compliance. 

I have worked too hard for this little boy's life, and sacrificed too much of my daughter's and my life, to let him exit pre-maturely without fulfilling using his life to bless and strengthen others, lead them to the knowledge of the Lord, and the confidence of knowing he has served the Lord well - no matter what time he gets to transition to Heaven. 

Plus, I absolutely see so much in him. He is so smart, so discerning, creative, and insightful. He is a master chef and his heart bleeds for the poor, as mine does also. The world, and I, need him to be a worker for Truth and solutions that impact millions of lives for the better.

I, of course, want him here as a part of my fruitfulness, outlasting my time on this earth. I also, of course, want God's will to be done in both of our lives.

I continue to stand in faith for both.

• That Samuel would be saved spiritually,
• emotionally,
• and physically,
• and that his life will fulfill all the plans the Lord had for him when he created him.
• That our enemy would have no foothold
• or stronghold.
• That I will find the peace
• and assurance I seek in the Word
• for how to walk these days out with full faith
• and confidence in what the Lord has done,
• is doing,
• and will do
• no matter what my eyes see
• and my heart feels.

Amen. 

~Rachelle, Samuel's Mom

A video from when Samuel was 4 and healthy. We trust this verse and look to the Scriptures for the answers. (Start at 2:24 if you want to skip his conductor instructions. LOL)

[Side note: this is where I believe the "if it's God's will" and "our days are numbered anyway" Christians need to wrestle with what they really believe versus what actions they take for themselves and their children, and what message they send, when they are diagnosed with sickness & disease.]

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