Here’s a snippet from an article from Special Needs Parenting, original is at this link:
“YOU ARE NOT AS RARE AS YOU THINK YOU ARE!
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.”
Not As Rare As You Think You Are was first posted on February 17, 2016 at 12:00 am.
©2014 “Special Needs Parenting”.
Executive Director at Snappin’ Ministries
Mother of 3 children, all of whom have a variety of diagnoses, Barbara is the foundress of Snappin’ Ministries (www.snappin.org) and currently serves as Executive Director. Besides being passionate about sharing the hope of Christ with parents, Barb is active in legislative advocacy, and serves as a partner and ambassador for rare disease.
I don’t actually know about the rarity of the diseases/diagnoses we’ve faced with our son. When he had the brain tumor the type of tumor he had was rare for a male and for someone his age. Many of his vascular atypicalities are extremely unique–does that equal rare? Prior to the Liver Transplant the underlying liver condition, Congenital Absence of the Portal Vein, was a very rare condition. If memory serves I looked this condition up at the hospital, accessing medical literature via computer not usually accessible to me seemed to show that this condition has only been written up a handful of times, I believe less than 20 times, over many years after having been first discovered during an autopsy in the 1700s.
When my son was an infant and still in the NICU I spent significant time accessing that hospital’s medical library looking for info on his then known conditions. I couldn’t find material (granted I didn’t ask for assistance and it could be out there) that linked more than a couple of his conditions.
We’ve undergone numerous rounds of genetic testing, including “exome” testing where Josiah’s DNA was compared to immediate family members, in the search for the elusive, yet presumed, genetic syndrome he “has”…All syndromes suspected have been found to be negative. At special needs events we’ve had conversations with others who have suggested the possible “condition” present, but subsequent testing has said No. If he Does have a genetic syndrome, it is either so rare or such an atypical presentation of a more common condition that it seems unlikely to ever be identified, or apparently treated…
Whether or not my son’s conditions are “rare” or not…the sheer volume of conditions and the existence of so many issues overlapping and interweaving in his life makes it “seem” rare in totality. I would Love to Hear from Anyone out there who has dealt with ADHD AND Autism AND Congenital Heart AND Liver issues (& Transplant) AND Brain Tumor AND Learning Disabilities AND High Blood Pressure AND Sleep Disorders AND Neurological & Sensory Impairments AND Growth Hormone Deficiency AND Hernias AND RSV AND Ear Issues AND Eye Issues AND Depression AND Anxiety AND Obsessive Compulsive Disorder AND Asthma AND Prematurity AND Twinsanity AND IUGR AND you get the idea…
Here is a link to the blog from the group affiliated with the above quoted article, with apparently daily postings from a Christian perspective:
I even find the name of their blog comforting, for chaos is something we’ve come to live with, endure, and eventually embrace…it is a way of life for families dealing with Special Needs. I used to think the chaos was more a function of so many kids so close together and the energy & upheaval that accompanies that family composition. When one of my brothers started having a lot of kids I used that word “chaos” in describing family life implying that he might be facing that scenario too. It came across as offensive to him, perhaps his household wasn’t chaotic like ours was…or perhaps his wife kept the chaos enough under control that it didn’t intrude on his personal space the way our chaos intruded on my space…perhaps he didn’t like the nomenclature and found that offensive, or perhaps he had a tad bit of denial of their actual status.
Any way, I hope to partake of the offerings at the above blog on occasion. Being people of Christian faith, yet also facing the Fact of the Chaos that seems ubiquitous with Special Needs living and parenting is an important reality check. Just like an alcoholic will never approach AA nor get help for their alcoholism if they never admit/acknowledge that they Are an alcoholic, so, as a parent facing complex special needs scenarios (both present & historical) it is difficult to receive help for the “chaoticness” of life if one doesn’t first acknowledge that it exists.
Sometimes I have found the “advice” of people of faith to be frustrating in the extreme. Some seem to focus only on the God’s Blessing side of life, virtually supplying a ready-made guilt trip if you are experiencing more of an “in this world you will have tribulation” type of an existence. It’s not that God isn’t meeting your needs or supplying blessings and sustenance in the midst of the storm(s). However pretending that the hard road is really the easy road doesn’t offer much comfort to someone on a seemingly hard road pathway–a journey not necessarily of their choosing nor the result of sinful behavior or bad choices. When we, as believers, Must walk that difficult path (and of course the Lord is the One who supplies All that we need to endure and hopefully overcome) I for one do not receive much/any comfort from others who minimize or disregard the pain, hardship, and suffering that are constant companions for such a trek; in fact I do Plenty of my own minimizing (when Monday’s Doctor said something like “you have been through a lot” I looked at her funny because I really have no frame of reference about all of this and feel guilty for “whining” if I try to offload/explain some of where I “feel” like I am)…
Well, all that to say I have hopes to encounter a measure of comfort and support from the above blog. Perhaps it’s because I’ve been a lifelong reader, but sometimes there can be much gained from the written word of others who have also traveled a challenging path. Years ago I read a Reader’s Digest article about a man who survived a small plane crash in the frozen wilderness and hiked out to get help for the even more severely injured other survivor. This hiker had no appropriate clothing or supplies. He also had a broken ankle. His hardships and perseverance were a great inspiration to me. Having had a sprained ankle a few times and basically crying when a bed sheet touched it I cannot even imagine the level of pain he endured in his quest for survival…
Anyway, speaking from within the current emotional pain of the fallout of further disappointments and systemic “abuses” recently endured, I am hopeful to encounter testimonies via the above blog that will be an encouragement and inspiration.
We are not alone, regardless of what it may “feel” like. The Lord has promised “I will never leave or forsake you” and that is a promise worth clinging to! Especially during those seasons when “chaoticness” overwhelms…