Tuesday, May 8, 2012

Writing Letters......

I'm behind in my letter writing.  No big surprise, really - we've been a bit busy and dreadfully self-involved.  I'm behind on thank you notes (and I was doing a pretty good job of keeping up with those).  I need to write a letter to Dinah, our Compassion child.

But the letter I really need to write is to Jorge's family.  I don't know where or how to begin.  After all, this letter is not about me, it's about them and the incredible gift they gave us.  Do I tell them about Babygirl?  If so, how much?  What would I want to hear if I were them? 

It's a conflicting internal conversation.  Part of me would want to hear no more than "Thank you" and "Our child is doing well."  Would I really want to hear about someone else being able to do all the things that my child, having died, will never be able to do?  Or would it make me feel better to know that someone else's child can sleep better, eat better, swim, ride horses, ski, travel, plan for college....

They sent us a picture.  I'd like to reciprocate that gesture.  I'm not sure I should.  If I do, just her?  A family shot?

And I need to involve Babygirl in the process. I'm sure a note from her would mean far more than anything I could possibly say, but how do I approach this with her?

I'm not usually particularly indecisive. And when I am, I usually end up figuring out what exactly has had me holding off on doing something.  I'm having a hard time picking my own brain on this, but at least part of it has to do with a deep and basic personality flaw:  I have trouble asking for and receiving help from others.  I don't like to feel obligated, indebted.  I like to stand on my own two feet, thank you very much, and I'm not fond of "crutches" of any kind.  I don't like contemplating how badly I've been crippled this year - emotionally, physically, financially and even spiritually.  Crutches, hell!  I've needed mental wheelchairs, financial ambulances and spiritual hospitalization! 

I can't repay any of it.  I think it's time to order a death certificate for my pride and get over myself.



  1. I think Dee Dee you need to carefully weigh how much you want to be involved with these people. As amazing as their gift was, they are grieving the loss of their boy, and people are NOT rational at this time. They may seek to have you in their lives in some way as a means to stay connected to their boy. They may want continued reports and updates. Or they may, like you say, not want to know that your kid is swimming, running and being a kid...that may be too much. I would start very slowly with an expression of thanks and deep gratitude that I know you have. You can expand this as you feel ready to, but I would test the waters slowly and only give so much right now. I mentioned before that in Canada you have to wait 2 years to get any info about your donor and this is to protect the family from intrusions on both sides, and to allow the donor family time to grieve in a healthy way. I worked for an orthopaedic oncologist who used a great deal of donor bone. The information given is quite sparse and likely for a reason. This is not to say that a wonderful relationship will not come from this, only that you have been through a great ordeal (and continue to deal with a sick child) and they too are in distress. Go slow is my advice to you. Be careful what you reveal. You can do more later as you have time to assess them and the situation.

  2. I have no advice to add to that exceptional note from Razmataz. I think she said it all. Is there no assistance at CHOP to guide donor families as well as recepients in this area? Judy P

  3. DD - At this juncture, I THINK I would keep it short and sweet. You are acknowledging their incredible gift to you - and don't forget how many other families have benefited from their compassionate GIFTS. "Later" on you can send a more detailed note, message, card.... Maybe just tell them you don't know how much to share with them other than thank you and leave it at that for now. Mike F