One of the hardest parts of living with a rare disease is not always the disease itself. Sometimes it is the comments people make around it.
Both Fadi and I have distanced ourselves from friends over statements we simply cannot tolerate anymore.
“God is testing your faith.”
Excuse me?
So God gave my children a rare genetic disease, made them endure surgeries, pain, fear, scans, and recovery just for the pleasure of testing us? I reject that completely.
I have zero tolerance for these comments and I will never allow that rhetoric around my children or our family.
I am a firm believer in God. I believe in destiny. I believe some things are written. But I do not believe God takes pleasure in watching children suffer or parents break.
I believe God creates us, and then life unfolds through biology, genetics, chance, environment, and the realities of being human. Our DNA has a flaw, just like millions of people carry flaws and mutations in their genes. That is not a punishment from God. It is not divine entertainment. It is science, biology, and the randomness of life.
God is good.
I turn to God for peace. I turn to God for strength. I pray for scientists to be guided, for doctors to have wisdom, for research to advance, and for funding to be found so families like ours can have hope.
But I do not pray to a God who is sitting above testing how much pain I can endure to prove my faith. I reject that idea with every fiber of my being.
What I do believe is that the patience and strength I have been given to maneuver through VHL comes straight from heaven. I have felt it many times. In moments where I truly thought, “I cannot do this anymore,” something always lifted me.
I remember during Covid, when we had to travel for Jude’s surgery. It was one of the hardest periods of my life. The world was in lockdown. Hospitals allowed only one visitor for minors. I was completely alone.
When Jude came out of surgery and was in the ICU, I stood there watching him, surrounded by machines, exhausted beyond words. ICU is always a heavy sight for me as a mother, but that day I genuinely felt I was breaking. I remember thinking, “This is it. I cannot take another second. I am going to collapse from this pain.”
At National Institutes of Health there are always priests, imams, and rabbis walking through the ICU halls offering support to families.
At that exact moment, a rabbi walked in and asked me if I needed help.
I burst into anger. I told him I could not take it anymore. I told him I felt abandoned by God. I told him I was angry.
That rabbi had seen me the year before while my other children were going through surgeries. He quietly asked if he could say a prayer out loud.
And then he began to sing.
“Lord, she is tired. Lord, she is sad. Lord, she has too much to carry. I ask you to lift her up, help her, and give her patience.”
It was one of the most beautiful things I have ever heard.
And in that moment, I truly felt the presence of God carrying me.
Not testing me.
Not punishing me.
Carrying me.
So please, do not tell parents of sick children that God is testing them. You may think it sounds comforting, but to many of us it sounds cruel.
God did not give my children VHL to watch how I react.
He gave me the strength to survive it.
