It does happen that all the available technology exhausts all of the medical innovation available and your precious child is going to become an angel whether you like it or not. You feel in your heart that it is quite likely that your child will die.
At this point, there are ways you can help your child in his or her final journey. There are things you can do or at least think about that will help you when the final days do come. In our culture this is usually a taboo subject; it certainly is difficult to talk about. Plus as long as they are on this earth we must never give up the hope that our children will survive, that they will miraculously beat their cancer. Perhaps you feel that you will jinx your child's chances if you even think about his death and his funeral.
Our Ped Onc family members who have lost their children wish to ease the burden of parents who follow in their footsteps. They want to give the parents some suggestions on how to deal with some practical matters, freeing them to enjoy fully their last days on earth with their child. They have suggestions that are practical, for instance, planning funerals. They also reveal to us deep feelings of spirituality as their child left this earth.
The first three pages below -- funeral costs, preparing your child for death, planning the memorial service -- consist of email letters to the Ped Onc group from parents recounting their sometimes painful, always beautiful stories of their own experiences.
Read them when you need to.
Palliative or Hospice Care: Does my child need this service? Article in Fall 2001 Candlelighters Newsletter.
Funeral Costs | Preparing Your Child for Death | Planning the Memorial or Funeral Service | Grief Resources (links and books) | Poems and Thoughts | more Poems and Thoughts | Handling the Holidays
added 3/01: A Bereaved Parents Wish List (on the Handling the Holidays page)
Gigi's letter to Honna
My heart, tattered yet intact, bleeds for you. My eyes, strangers to you, yet not, cry for you. My humble words may hopefully give you a few seconds' reprieve from your horror, give you something else to focus on. What the huge lump in my throat can do for you I have no idea.
I'm new to Ped-Onc, but not new to childhood cancer.
First, you needn't apologize at all -- NO parent is prepared or trained to know how to get through their child dying.
I, too, held my child. Rocked her sweet little soul, as someone wrote in another posting, to another set of loving arms. It was July 28, 1996, very early that Sunday morning.
I have a few ideas for you -- take what you like and ignore the rest. Plus, since I'm new to Ped-Onc, I don't know if anyone else has told you this kind of stuff, so sorry if I'm just butting in... I've only read a few days' worth of postings.
Take lots of pictures. And also with you holding him. Takes ones you believe you'll NEVER look at. I have some I'm not sure I will ever look at, but I'm glad they exist just in case I want to someday. I had someone else look at them to make sure they had turned out. They did.
Have a plaster (or something like that) mold made of Matthew's hand or foot or of the two of you holding hands. My friend did this. I sure wish I'd done it, but I never thought of it.
Record his voice. Write down everything he says.
Don't wash his clothes or sheets -- his smell will be very important to you for awhile.
Save a lock of his hair if you can.
You tell him there are many cancer kids waiting for him in Heaven!!! Including my sweet Kelsey! And make sure he knows that you'll be with him again someday, too.
And for you, Honna, I want you to know this: When Kelsey died it was the most amazing experience I've ever had -- so unbelievably horrible yet so unbelievably spiritual. I was rocking her, and her spirit soared through me and I could FEEL IT. She gave me these words: "I have no regrets the way I parented this child!" I literally almost yelled the words, and right after I said them I said to all present that I had no idea why I had just blurted that out. I know she wanted me to go in peace, without worry, without guilt, without fear, all that junk.
Time does not heal. Time passes. It's what you do with the time that will make the difference for you. And so I have pain still; I will have pain always. Yet, amazingly(!), I'm still standing. And, I suspect, so will you.
Know that I'm here, and I've been there, and I have a perspective that many parents are lucky enough not to have. And I'm glad to exchange email and/or phone calls with you.
One more thing, then I'll let you go -- your brain will soon hit overload and you'll start forgetting things (if it hasn't already). DON'T WORRY -- this is completely normal. Mine didn't go to mush until Kelsey died, but then she only lived 26 days after diagnosis. It took me 2 months to remember my own phone number, for example. A year later I'm *almost* back to full speed.
Oh, and one more thing. (I guess I'm jamming all the key ideas into one email in case I don't get another chance to tell you.) Go ahead and leave something on your answering machine recording that tells people not to expect a return phone call right away, and if they need to reach you to please try again. This was a big help for me.
And remember I'm just giving you ideas, not trying to push them onto you. No matter what suggestions you get from anyone, listen to YOUR heart FIRST. It's always right.
Kelsey's O:) and Kiersten's :) mom