By Ute Wallentin, OIFE Social Network and Board member of the German OI-Association (DOIG)

When OI-children or adults or members in general from our association die, how do we want to deal with the news of their death? And if they die (much too) young, what offers can we make to the surviving relatives? Ute Wallentin has made some thoughts about this and collected suggestions.

For a long time I brooded over this text and weighed whether and how to write it, and why now. At the end of January, winter had broken in again, with lots of snow and “dangerous” ice. Everything suddenly seemed even colder, empty and dead. But we all know from experience that buds will soon grow under the snow on the trees, that life goes on and soon everything will be green again.

Still, sometimes I feel sad because a year ago our OI mom died and in January a dear, young and energetic OI friend died all of a sudden and left everyone incredulous and shocked.

It is not always easy for someone with OI to reach an advanced age

In the past year, the death of my OI-mother, who was 86 years old and full of life, saddened many people as much as it saddened us. But on the other hand, within my large and international OI family, I have also been able to give rather great encouragement with this sad news to quite a few others, because it is not always easy for someone with OI, damaged heart valves, a lot of pain and rotten connective tissue, to reach such an advanced age. But fortunately many of us succeed! On the other hand, the fact that another very young man, only 34 years old, just had to die of a stupid pneumonia is and remains tragic and we are inconsolable and sad about it.

How do we deal with deaths among our members?

Especially this sad loss raises again an important question in our German association DOIG which some of us are always concerned about: how do we deal with deaths among our members? Why do we usually hardly inform our members about it and how do we try to help the relatives and friends of our deceased through the then following hard times, to accompany them somehow despite our own helplessness?

When I think about this, or when I talk to others, we come up with quite a large number of families who have had to say goodbye to their children. These deaths were not always related to OI, even perfectly healthy, non-disabled young people die sometimes far too early. But in many cases a connection with OI was recognizable and this can of course cause fear, for OI patients themselves and for their parents and relatives. That is why we have been so extremely cautious about this topic so far. But that is about to change. We are looking for a form that does not trigger fear, but shows the bereaved that they are not forgotten, that we are very happy if they continue to be members and stay connected to us!

Some of them, unfortunately only a few so far, even continue to come regularly to our events, like the older couple who continue to come to adult seminars and often to the annual meeting. Like others who after losing their OI baby, still actively participate and offer workshops at our conferences. Or like Angelika and family, who year after year and lovingly takes care of our toddlers in the nursery at the annual meeting in Duderstadt, even though she lost her first daughter in infancy. Hats off, to all these and thank you!

But what about all those who remain members after such a death, but don’t have the heart to come on their own when we meet? They, too, continue to be welcome and we talk among ourselves again and again about these families as well as about the great people we have all lost but not forgotten. But unfortunately, the bereaved relatives hardly notice and know that. Are we doing this out of shyness about death and grief, out of respect for their loss? But couldn’t we do it differently and better?

Years ago, we decided against printing obituaries in our OI-journal “Durchbruch” (=breakthrough) so as not to frighten anyone. I still think that’s okay, in a way. But unfortunately, we have also left the relatives perhaps too much alone with their grief.

Recently, after about 20 years, I finally met an orphaned OI father again, whose daughter had died at a very young age. I know that he very courageously faced his grief and trained as a grief counselor and is still actively dealing with it today. This impresses me very much and gave me the idea that within our association we should please deal with this difficult and painful topic in a different way.

Virtual commemoration on myDOIG

Within the protected framework of our members’ forum meineDOIG we could commemorate in an appropriate way – and of course only with the consent of the relatives – those who are unfortunately no longer physically and tangibly among us, but whom we do not want to forget. Like our two former chairmen Peter Radtke and Kall Henn, but also many others who were not so well known. On Facebook we still see photos of some of them from time to time, which always reminds us that they could no longer post them themselves. Around the campfire in Duderstadt at our annual conference or in conversation with each other, we tell each other funny and thoughtful stories and can even laugh together about some memories. And that feels so good!

Mediation of mourning groups, own counseling offer

We might have the possibility, for example through our membership in the umbrella organization we belong to “Bundesverband Kinderhospiz” (childrens hospice), to arrange contacts to mourning groups. But it would also be possible to establish another internal counselling offer within our association, because a psychotherapist who is herself married to one of our adult members would be happy to accompany individual members or possibly groups on this topic. This would be possible, similar to the comprehensive counselling offer we have had for two years already via telephone or Zoom.

Please get in touch!

We ask very cordially for reactions of our readers to these considerations! I would be pleased to hear or read from those who feel addressed here and to hear your opinion. All reactions and thoughts are very welcome, not only from inside Germany or Europe!

Best regards!
Ute Wallentin