Raising a child with a chronic illness, disability or special need can often be a bone-achingly isolating existence. The stares, exclusion, judgment, and hurtful comments can sometimes make caregivers like us feel like we are serving time in a penal colony, far from the comfortable normalcy of the average family. Without realizing it, well-meaning family and friends can push us further to the margins with their suggestions, pointers, and unwelcome recommendations. (Thank GOD for places like Not Alone!)
Add to this isolation a rare diagnosis, and parents have an entirely different cluster of challenges. In the United States, a condition is considered “rare” if it affects fewer than 200,000 persons combined in a particular rare disease group. For those caring for a child who has a diagnosis in this category, the stress only increases as…
- Getting to that proper diagnosis can often be a huge struggle.
- Cures are non-existent.
- Treatments, if there are any, are extremely expensive.
- Information on the condition can be difficult to find.
- Practitioners specializing in the diagnosis are only available at major medical centers, if at all.
- Schools are completely at a loss when it comes to comprehensive understanding of the diagnosis.
- Pity or confusion from others seems to multiply exponentially when they learn a child has a rare disorder.
This cluster of added challenges can make us feel unenviably rare indeed. We can buy into the lie that no one in the world understands what we are going through. Nothing could be further from the truth!
YOU ARE NOT AS RARE AS YOU THINK YOU ARE!
The Old Testament prophet, Elijah, bought into a similar fallacy after he had confronted the prophets of Asherah and Baal. In 1 Kings 19, Elijah flees for his life, whining to God, “I have been very zealous for the Lord God Almighty. The Israelites have rejected your covenant, torn down your altars, and put your prophets to death with the sword. I am the only one left, and now they are trying to kill me too.” (1 Kings 19:10, NIV, emphasis mine) Later in the conversation, the Lord reveals to Elijah that he is certainly NOT the only prophet left. He reassures Elijah and directs him how and where to unite with others who share his commitment to the Lord.
God has done nothing less amazing to refute the false, isolating beliefs of families in this day and age.
The National Organization for Rare Disorders (NORD) has as its motto “Alone We Are Rare. Together We Are Strong.” This strength translates into NORD being the official US Sponsor of World Rare Disease Day, observed the last day of February every year. There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day. An estimated 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population.
The organization I lead, Snappin’ Ministries, has been a Rare Disease Day Partner for years. The second-largest segment we serve after those whose children have an autism spectrum disorder are those raising a child with a rare disease. My own family falls into that category as well. We have offered mutual support to caregivers facing seizure disorders, cerebral palsy, Spina Bifida, Dwarfism, and so many other challenges that NORD identifies as “rare” over the years.
This year, Snappin’ Ministries decided to bring together those caring for a child in this category by launching a unique mentor group just for them. On WORLD RARE DISEASE DAY 2016, we will launch an online group just for caregivers of kids with a rare diagnosis. This will afford parents, grandparents, and guardians the chance to privately connect with others who understand this unique cluster of challenges. There will be opportunities to process some of the hardest parts of this journey, examine personal and spiritual beliefs, grow in faith, and weekly connect via video-conferencing for more connection.
Just as God comforted, nourished, and redirected Elijah to connect with others, so He has provided this faith-based opportunity for parents with these unique challenges to connect with one another. To celebrate World Rare Disease Day with us and check out more information on this group, visit our Event Page on Facebook.