Dragon Hare Studios – Life with a chronically ill child with a suspected rare disorder can feel like one is navigating a giant, vast, space with an unknown destination. There are no way markers, no map or guide to help you find your way. There is only frustrations, hopelessness, plenty of tears but always, there is so much love.
As a family, it has been another difficult year. We’ve had to remove our older children from things they love to do, we’ve had to cancel birthday parties, play dates and most recently, spending the holidays with loved ones all because one of us was too unwell to handle it.
It can be a heartbreaking journey if we let it. We could let the darkness creep in, focus on all the negatives that occur and live in a bleak place.
Or, we can accept the difficulty of the journey while letting the light creep in.
The world across, there are families with children that have rare, un-diagnosed illnesses. Other parents who have heard “we don’t know what is wrong”, or “we can’t take care of your child”, or “you must do more tests, see more doctors, have more medication”.
All of these families are alone today, Christmas Day, their child too immuno-compromised to risk a traditional family celebration. All of these families without turkey dinner’s, not because they cannot afford it, but because it is life threatening if their child eats it!
To the families of the rare children who are setting precedents in the medical community, who are becoming teachers to doctors, and medical care givers because they don’t know all the answers, to the doctors who are pioneering research or attempting to change the view point that learning to cope is the only acceptable out come, it is to all of you that we send our Christmas greeting this year.
To all of the care givers that look after our son, to his doctors, the nurses, the blood takers and the test conductors, the therapists, the administration that allows a new path, the advocates, the case workers, the teacher and the most amazing aide – to all of you, we are grateful this Christmas season. Whether you are working today to help another family or home with your own family, please know that we appreciate the light you bring to our lives.
Light always follows darkness, no matter what we do, a new day will dawn. Some times, we are even lucky enough to find a way to light the darkness.
May you have a Christmas blessed with an immense amount of light and love.
A side effect of all the medication our son takes, is that he doesn’t sleep well. It means we are often awake at the time of day when the northern lights dance the biggest! Out of darkness, always comes light.
The Morritt family – Fall 2017, 2 miles north of Mannville, Alberta