Tonight I happened on an article online from the Toronto Sun about a transplanted Newfoundland family living in Brantford, ON who have two children afflicted with Batten’s disease. I happened on it quite by accident. I was reading some headlines on the CANOE webpage when I saw this –
Can they be saved?
Pity the parents who bravely cope with a single child who suffers a terminal disease. But spend a moment and try to fathom the crushing weight looming over Lori Keeping and her partner Sheldon Huelin, who have learned that their 5-year-old daughter, Jamie, and their 2-year-old son, Carson, both may have a short time to live.
I think nowadays when I see something like this it takes my attention. I went to the Sun article at http://www.torontosun.com/News/TorontoAndGTA/2006/10/25/2124377-sun.html I was of course stunned when I saw what it was. Batten’s disease – and a Newfoundland Couple and they three hours down the road in Brantford.
In the past year my family has come to know this disease too well. I think I will attempt to make contact with this family. We can pray for Jamie and Carson as we pray for our little Andrea and Becky. This is hard stuff and it is all faced with a “one day at a time” attitude. I have been impressed with the strength I have seen in my own family and in others that I have become aware of who live in this difficult reality. I think the singularly greatest gift that we can give to those living in the midst of all of this is the gift of letting people know that we care and that we are here.
One of the greatnesses challenges in pastoral work is facing the really difficult and chronic cases where people are facing odds that are to most impossible to fathom. Tonight you may have a person in your life facing, what seems to be, insurmountable odds. You may feel confused about what to say or what to do. It is not easy to be in that place where you feel helpless as a friend or family member. Here are a couple of things to remember;
- There is really nothing to say. Words cannot make the impossible go away. Sometimes in fact our words can make it worse. For me, personally, there is nothing worse than having someone say that it is all “God’s will,” or a part of “God’s plan.” I think that is often something people say when there is nothing else to say. I for one refuse to think that God wills that reality for children, for families or for our society. It is not that simple. God is instead loving and kind and weeps with us in the midst of our weeping as well as rejoicing with us in our times of great joy.
- If there is someone in your life who is facing that which is not clean and easy – Just be there. Let people know you care. Tell those close to you that you love them. It is OK to let people know you do not know what to say. It is most wonderful for people to know that they are loved and prayed for and that there is a hand to hold, or a shoulder to lean on when it is needed.
- Encourage hope. God has given us hope and as brothers and sisters in Christ we ought to foster hope in each other. Even in the most “dark night of the soul” there is hope for new life. In fact it is sometimes impossible for us to see and know the beauty and warmth of light until we have walked through deep and the cold of darkness.
Life is too hard some days to take it all in one sitting. Instead take this approach; “One day at a time–this is enough. Do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful it will be worth remembering.” – Anonymous