By: Jennifer Saks
Jennifer wrote this post to the Our Kids Listserv in response to another parent's request for advice on how to help a friend with the trauma of removing their child from life support.
Jennifer kindly gave her permission for me to place it here.
Almost two years ago (Nov. 20th ) we said goodbye to Nathan. He spent just a couple of hours on life support, after 14 years of struggling with Menkes' Disease. I'm glad that you are there for your friend. Two of my best friends were at the hospital the day Nathan died, too.
I was so glad that they were there. They were apparently there before he died, but they didn't come in until afterwards... we were alone as a family while he was dying. I don't know what your friend wants, but you could ask her. Personally, I think that it is a very private family time. We held Nathan, talked to him, and reminded him how very much he was loved, and that we would see him again. After he died, the nurse let us keep him as long as we wanted to. It was around 2:02 PM, and I held him until 5:00 that afternoon! She put us in a little comfortable room with couches and nice soft chairs, and I held Nathan just as I have for so many years, just like he was napping. It was so good for me to be able to do that. Kraig and the other kids held him before he died, but they didn't seem to need to sit and hold him. I really did, and I was glad nobody told me I needed to let go.
Our friends came in and stayed with us. They weren't sure what we wanted, but we told them we wanted them to stay with us. At one point, Faith took the kids down to get something to eat and drink, which we were thankful for. My other friend, Kathleen, is the mom of a very disabled daughter who has been on a vent for 13 years, since her birth. It meant a lot for her to be with us, because she has been there in prayer and deed for us since Nathan's birth. (He's 3 years older than her daughter Sarah). She's also the wife of one of my cousins, and a nurse. Faith, my other friend, is my dearest friend. She never understood a lot of the medical "stuff" but she loved Nathan, and she loves me. Nathan's other cheerleader, Ron, came in for awhile... he was always there when we had problems with Nathan, and if nobody else could get a smile out of Nathan, Ron always could. He loved Nathan more than anyone else outside our family, and Nathan knew it. So it meant so much to have these friends with us. Just with us... we didn't need them to do anything other than just encourage us and love us. We just all sat around and remembered things about Nathan, chatted about things in general, and rehashed the day. We asked them if they were uncomfortable, and they said they were not. It meant so much to have them with us, but we didn't want them there if they were uncomfortable. I think it was important to them to be there, too... they needed some closure to their relationship with Nathan as well.
I think that the biggest thing I have ever asked out of a friend was when I asked Faith if she would be willing to go with me to dress Nathan before the funeral. We had a viewing of his body, but not an open casket at the memorial service. (We had the burial in the morning, and then had the memorial at 2:00 in the afternoon). She said "yes" with no hesitation. If she'd hesitated, I would have totally understood, but she told me she was honored that I asked her. Kraig didn't want to do it. He said he'd said his goodbyes at the hospital, and that it would bother him to see him again, so I didn't ask him. For me, I had to do it. I spent 14 years with that little body, dressing him and washing him, and I needed to do it once more.
I don't know if your friend is going to want to do that or not. She might not have even thought of it, so you could ask her if this is something she wants to do. (Maybe you'd want to share my letter with her). I don't know what all you want to know, but if there are some things you'd like to ask me, please feel free. It won't bother me, and I'd like to help. One thing, though... the main thing you can do that will endear you to your friend forever, is to just be with her and cry with her. There isn't anything else that really matters. You don't need to worry about what to say, because there is nothing you can
say to make it better. Just love her.
By the way, after reading your note this morning, I took the time to go for a long walk in a beautiful cemetery a few miles from here. It's not the one where Nathan is buried... but I wanted to look at some of the very old graves. There are people buried there from back in the early 1800's, and it was so peaceful and beautiful. The gravestones are so eloquently designed... much nicer than most of what we do today. I said I wanted to be the one to design Nathan's gravestone two years ago (I'm an artist), and it still isn't done. I think I've figured it out. It's the last tangible thing I can do for Nathan, and I think I don't want to close that door. Anyway, I looked at lots of graves of little children who were buried in the late 1800's-early 1900's, and was so touched. There were a lot of them who were not more than a day or two old, but some were several years old. Today is like summer out, except for the brightly colored leaves everywhere, and it was a wonderful place to walk. I think I'm actually inspired enough to work on that design now, too. :) And if it weren't for your letter, I wouldn't have gone there... so thanks!
Wed, 5 Nov 1997
Jennifer, married to Kraig, faithful best friend (ADD); mom to Emilie 18, witty, loving, and now a college student! (NDA); Matthew 13, tender heart, computer whiz kid, ADD; and my little love, Nathan (14) who left us on Nov. 20, 1995 -- Menkes' Disease, seizure disorder, microcephalic, g-tube fed, catheterized with bladder abnormalities, profound disabilities and health impairments, but always smiley and lovey and the sunshine of our hearts.
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