Rare Disease Families Have Extensive Experience in “Letting Go”

The task of letting go starts at the time of diagnosis of the rare disease, when families have to let go of the dreams and expectations they had for the future of the one who has the rare condition.

It often continues as they take the child to the hospital for examinations and testing. One of the most difficult things for parents to do is trust the people who will care for their precious son or daughter when they let a child go into surgery or leave a child in the hospital.

When I’ve been in touch with many parents who have been through that process more times than they want to count, I’ve heard their feelings of anxiety and the difficulties of letting go– especially the ultimate letting go that is forced upon them by the death of a loved one. Some will reach out to others on social media to get support and ask for prayers. It is always helpful to know that others understand how you feel at such a time.

Of course, every human has experienced letting go. I’ve heard people talk about letting go of their childhood when they have had to take on the responsibility of adulthood, letting go of a job, of a home, of a pet. Learning to let go seems to be one of those things that many people have trouble with, hence most know the slogan, “Let Go and Let God.”

Easier said than done!

Letting go usually brings on fear, which reminds me of a story I heard many years ago that illustrates how very hard it can be to actually let go:

A man was walking along a steep cliff one day when he accidentally got too close to the edge and fell. On the way down he grabbed a branch, which temporarily stopped his fall. He looked down and to his horror saw that the canyon fell straight down for more than a thousand feet. He couldn’t hang onto the branch forever, and there was no way for him to climb up the steep wall of the cliff.
He began yelling for help, hoping that someone passing by would hear him and lower a rope or something. “HELP! HELP! Is anyone up there? “
He yelled for a long time, without receiving any response.
He was feeling abandoned when he finally heard a voice ask, “Can you hear me?”
“Yes, yes! I can hear you. I’m down here!”
“I can see you. Are you all right?”
“Yes, but who are you, and where are you?
“I am the Lord. I’m everywhere.”
“The Lord? You mean, like, GOD?”
“That’s Me.”
“God, please help me! I promise if, you’ll get me down from here, I’ll be a really good person for the rest of my life.”
“Easy on the promises, now. Let’s get you off from there, then we can talk. So, listen to what I want you to do.”
“I’ll do anything, Lord. Just tell me what to do.”
“Okay. Let go of the branch.”
“I said, let go of the branch. Just trust Me. Let go.”
There was a long silence.
Finally, the man yelled, “Help! Help! Is anyone else up there?

On a personal level, I happened to hear this story at the time I was having a problem letting go of anger and resentment. Yet, when I did let go, I found it to be a very freeing experience.

If you are facing the daunting task of letting go of any bad feelings, please know that others do understand. Reach out to others. Ask for help. Ask for prayers. Let God work through people. Those of us who have been there know how hard it is, and we want to help.


Denise Crompton

Denise Crompton

 Denise Crompton and her husband, Bob, raised four children, the oldest of whom, Kelley, had the rare disease of Mucolipidosis 3. The many years that they spent caring for Kelley prompted Denise to write two books. Kelley’s Journey: Facing a Rare Disease with Courage chronicles their own daughter’s experiences. Diagnosis: Rare Disease includes some of the experiences of 12 more families, and was written to help raise awareness of all that is involved in living with rare conditions. All of Denise’s royalties go toward rare disease research. The Cromptons live in New Hampshire, where they spend their retirement years enjoying their many grandchildren, while still reaching out to help families with rare diseases.

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