The War in Holland
There is a beautiful story called "Welcome to Holland"; it describes finding out that that your newly diagnosed disabled child won't be the healthy child you thought you were having by comparing it to planning a trip to Italy and landing in Holland instead. It's positively brilliant. The author explains to parents that even though they prepared for the fast paced exciting life in Italy and learned the language that they should give Holland a chance. And once they get used to it they will grow to appreciate the beautiful slower paced life there with it's unique landscape, tulips and windmills and even learn a whole new language. This is all true. I found great comfort in the story and have referred dozens of newly diagnosed parents to read it when they've contacted me in the after-shock of a Canavan diagnosis. But Holland is far from perfect. And after being here for over 19 years I have discovered that there is a secret war going on in Holland. It is a war fought by us, the parents of disabled children. We must fight all day everyday to get services for our children. We fight to receive funding for medical care, we fight with schools, doctors, insurance companies and we even fight with other people over handicapped parking spaces. We watch friends bury their children and cry with them grieving their loss while wondering if we'll be next. We are veterans of war and many of us even have symptoms of PTSD. But living in a war torn nation doesn't mean life is unhappy, Holland is still beautiful. I have come to love and appreciate the life here. But sometimes you need to live in a place long enough to really become a local and to know the things only locals know and share only with each other. A tourist would never know about the secret war in Holland.
I’ve read a lot about the physical and mental health issues of full time caregivers. We suffer from many physical problems related to taking care of our children. We suffer from many things that no one can see. We oftentimes don’t share all these details with even our close friends or family. Our own problems get put on a back burner out of necessity because our first priority is to care for our children. This is not ideal but sometimes we simply have no choice.
If we’re lucky enough to have full grown children this can compound the physical difficulty of taking care of a disabled adult who is 100% dependant on us for absolutely every need 24 hours a day, 7 days a week for their entire life.
Insurance companies have an interesting way of dealing with this. They simply refuse to pay for anything that is deemed a “convenience item for the caregiver”. This often results in additional out of pocket expenses for adjustable wheelchair handles and things of that nature.
My son is 19 years old and I’d never trade having him alive for anything. But with that said there are consequences to my own health, physical and mental. This is the side of my health that others don’t see.The full time caregiver is often on call for the entire life of their child. I’m never more than 20 minutes away from my son’s school and get called to pick him up if he’s sick or if anyone in the building is sick.
Living in a constant state of “readiness” is exhausting. I’m ready for anything all the time. There are no breaks from this type of hyper vigilant parenting. Don’t get me wrong I’m not complaining, just explaining. Sometimes when I see another parent pushing their disabled adult child in a wheelchair we exchange a smile, no words are necessary. They get it. We’re exhausted, mentally beat down, physically compromised and tired of fighting for everything. We share many things. We share a quick glance that says it all. But we also share a smile that speaks volumes that we could never articulate to someone who hasn’t walked years in our shoes. We have made it. We landed in Holland and adjusted to the life. Our children are grown, we were probably not expecting them to still be here as adults. All the physical pain and mental anguish can’t take that away. One look, one smile while passing in a hallway at therapy says it all. Above it all we are survivors, battle scars and all.
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Canavan Research Illinois
Rare Disease Awareness
February 29th was Rare Disease Awareness Day. I chose not to post anything on that day because "rare disease" does not give an accurate description of Canavan disease. Canavan has recently and more appropriately been designated as an "ultra-rare disease". While I fully support and understand the need to make people aware of rare diseases I also think it is critical to advance this awareness to each individual and unique disease. A rare disease could affect 200,000 people in the US, but Canavan affects only 1,000 children and young adults worldwide. Unfortunately the only people who really and truly want to discover the cure for Canavan disease are the families affected by it. Our research can and has already been applied to other much more common diseases such as Parkinson's and Alzheimer's, but the original research was funded, advanced and pioneered by the families living with Canavan disease.
I created Canavan Research Illinois because our children need someone fighting for them. My work focuses on advancing disease specific research and a more narrow goal of targeting awareness to help children born with Canavan.
If you want to understand more about what it feels like to receive a diagnosis of Canavan disease try to imagine any other illness that you are familiar with though your own experience or that of a friend or family member. Now imagine that the baby who was just diagnosed with Canavan disease is your own child. When you are given the diagnosis you will also be told that there is really not much you can do to help your child because there is no cure. It's a rare, fatal, and progressive brain disease that will ultimately rob your child all motor function, including the most primitive and automatic functions such as respiration. I was told to take my baby home and look for a nursing home. Imagine a disease so rare that no one has even heard of it. So when you decide to share this devastating news with your friends and family you also need to give a detailed description of the diagnosis and prognosis. There is no way to accurately describe what it feels like to learn that your baby has been born with Canavan disease. I can't do that by posting a meme about rare diseases. I can't even begin to describe the absolute destruction of hope that is Canavan disease. And I will not try to attempt it here. I do want people to understand that there are diseases so rare that they are virtually unheard of by the general population.
If you know someone affected by Canavan disease please let them know if you are interested in learning more about the disease, what they are going through on a daily basis, or how you can help. Or message me, I have devoted my life to helping discover the cure for Canavan disease. My son is eighteen and a half years old and still doing well, largely in part by the research I have been fighting for and funding for the past eighteen years when I received the news of Max's diagnosis. I never gave up hope and my mission is to give that same hope to as many other families as possible.here.
"When you hear hoofbeats think of horses, not zebras."
In medicine this is a reference telling doctors to first look for a more common explanation of symptoms before searching for a rare or obscure diagnosis. It makes perfect sense. First rule out the more simple possibilities until those yield no diagnosis, then begin searching for a less common explanation.
But what happens when you already know the hoofbeats belong to a zebra, and your child has already been diagnosed with a rare disease? I can tell you from nineteen years experience that a lot of the time I still have to remind the doctors to look for the horse and not the zebra.
Children who are living with a rare disease still suffer from most of the common childhood ailments from reflux to severe respiratory illness and everything in between. And sometimes the sound of zebra hoofbeats is so loud the medical team never even stops long enough to listen for the horse.
Not everything that goes wrong with my child is related to Canavan disease. This is something that I've discussed with other Canavan parents as well, but I'm sure it's just as common in other rare disease communities.
When Max was a baby, before I had ten thousand photos readily available on my Facebook page, I had to bring a photo album with me to every ER visit just to prove to the team that "no, he's not usually like this". They would look up the description of Canavan and then come back puzzled about why we were even there because the unconscious, sick child actually matched the outdated and incorrect textbook definition of Canavan disease. I would repeatedly explain that I expected them to figure out what was wrong with him, besides Canavan disease, and fix it!
As Maxie has gotten older, and is now pretty well beyond the typical life expectancy for Canavan, I have encountered another side effect of the zebra phenomenon. The "typical disease progression" answer. And I find myself again put in the position of advocating for my son and demanding that the medical team look for the horse, ignore the distraction of the zebra, and save my child. I have learned that once they begin attributing things to "disease progression" that's my cue to grab the 8x10 glossy of Max at his riding lesson the week before and remind them of the first rule "When you hear hoofbeats think of horses, not zebras."
Always hope for a miracle!