1. It is frightening. -- As with any typical child, every day could be your child's last. However, this is far more of a likely reality for caregivers like us. This threat-of-life reality hit our family hard a few days ago. Hemophilia researcher and patient, Dr. Holbrook Kohrt, passed away this week at the tender age of 38, despite major advances in treatment. This is a sobering reality for those of us raising a child with such a diagnosis.
Seizure disorders are another example of rare diagnoses that worry caregivers to the core. While the typical world seems to take for granted that everything goes back to normal after a seizure, parents can tell you of the loss of language, function, and threat of life. Just like a computer crashing, each time a child goes into status could be their last.
Premature death is frightening. None of us wants to face the prospect of outliving our children. Yet, it's a demon that haunts us daily.
2. We live in a state of constant heightened alert and stress. -- With the frightening realities we face, is it any wonder so many of us live with post-traumatic stress? Without notice a malfunctioning shunt can create debilitating pain for the child with hydrocephalus. Every day childhood illness can render the child with sickle cell disease hospitalized in perilous condition. Cancer can darkly reappear threatening the child with WAGR Syndrome. And on it goes.
We must be ready to turn off our emotions and make critical decisions for our child at a moment's notice. The phone calls from the school make our heart skip a beat. We release our kids to do things that "normal" kids do, like field trips, but hold our breath, trying not to be tense imagining the worst possible outcome.
3. We are vulnerable. -- With that heavy weight of responsibility on our shoulders, we must stay on top of the latest information regarding treatments, surgeries, therapies, and medications. If we are fortunate enough to have a treatment for our child's diagnosis (because many, many rare diagnoses do not), we long for improvements and cures. Yet, as I wrote a few weeks ago, some treatments can be formulated at a hefty moral and ethical price.
This leaves us terribly vulnerable. In our desperation, we might be too quick to try a new treatment, not waiting until all of the kinks have been worked out. We are more subject to the demeaning pushiness of medical professionals who are convinced that they are the preeminent authority on something unusual. We are more likely to be taken advantage of by schools, who often have difficulty in understanding the nuances and adaptations involved in rare disease. We are more likely to be taken advantage of financially in our desperation for help in caring for our high needs child as well.
4. We are more financially stretched. -- Because of the nature of our child's diagnosis, the mountain of bills never seems to subside. Yes, insurance and supplemental Medicaid can pay for a large portion of the expense, but there is still a disproportionate amount left. Between specialty pharmaceuticals, adaptive equipment, surgeries, running to a cadre of specialists and therapists, and merely putting gas in your car for the seemingly endless appointments, caregivers struggle to provide a "comfortable" life for themselves and their families. Now add to those things specialized clothing, lost pay from mom or dad missing so much work to be with their child, and a thousand other incidentals that only come with a rare diagnosis, and this is an above-average financial strain.
5. We are grateful for the little things. -- It's not all bad! Rare diseases and disorders can make everything seem like an uphill battle. This make caregivers like us appreciate the little things -- which incidentally, end up being not-so-little. A full night's sleep for everyone at home in their own bed is a BIG deal. A warm meal enjoyed together as a family is a BIG deal. Kindness or concern from another human being is a BIG deal. Accessibility into public places still remains a BIG deal. While everyone takes some things for granted on occasion, for the most part, parents like us have the advantage of finding God's grace in the small stuff.
6. EVERYBODY knows SOMEBODY affected by rare disease. - Each person with a rare diagnosis is a part of a wider circle. Rare disease affects more than just the person with that diagnosis. Besides parents and caregivers, family, extended family, medical professionals, education professionals, neighbors, friends, and fellow church-goers are ALL touched by rare disease. It is estimated that 30 million Americans are affected by some sort of rare disorder. This leads me to my last reason you should care...
7. God mandates in His word that you should care about this. -- Galatians 6:2-3 sums it up pretty well. We are called to bear one another's burdens. We are called to love as Jesus did. This means that we all need to take notice of the concerns of people living with a rare diagnosis. Whether it be Addison's Disease, Chiari Malformation, or Rett's Syndrome, these families deserve your undying support an concern, not just for one stretch of difficulty, but for the long haul.
- Pray without ceasing. -- This is a God-sized challenge! Only by His continuous guidance and help can families like ours get through. Pray for the researchers, that they would remain ethical and respectful of all life. Pray for the doctors and medical staff, that they would really listen to their patients. Pray for educators, that they would put the extra effort into accommodating and including these children with respect.
- Offer financial support of any size. -- If we all gave just a little, imagine how much we could raise in total! Please support us in our support of rare caregivers by purchasing our limited edition t-shirt TODAY at https://www.booster.com/rare-disease-day-2016 OR by donating on our website at http://www.snappin.org/#!give/c1jxp. Your funds go towards purchasing books for parent mentor small groups, sending gift cards and baskets during crisis or hospitalization, and offering events that give special caregivers a chance to breathe and smile.
- If you are a rare caregiver, join our Facebook Parent Mentor Small Group! -- We have designed a NEW parent mentor small group specifically focused on the extra challenges of raising a child with a rare disorder. Learn more about it by contacting us via our Facebook Page at https://www.facebook.com/snappinministries/
- Follow the news on Rare Disease Day. -- Stay up-to-speed with the national movement to bring awareness on Rare Disease Day both in the United States at http://rarediseaseday.us/ and worldwide at http://www.rarediseaseday.org/. You will be surprised what you learn!
- Help spread the news. -- A couple of years ago our ministry put together this fast facts card for others to share when they committed a "rare act of kindness." Feel free to copy and print this card, leaving it behind when you fill somebody's parking meter, pay for their coffee, or let them get ahead of you in line. The world could sure use more kindness these days, and the world needs to hear about rare disease as well!