Monday, September 26, 2011

Lyme Disease, neurological differences, and Death

Ok, I was reading the great Stark.raving.mad.mommy post on death and grief for children with aspberger's syndrome, which is what my kid's neurological issues mimics on the milder end of the spectrum, and I began to leave a long comment on how we have been functioning and explaining these things to our little ones. And then I thought, instead of posting to her site, on a really old post, perhaps I will pots my rambling commentary here.  It isn't funny....but serious is important sometimes, too.  

First of all, there were a couple of comments that discussed talking to children (especially Star wars loving boys) about death and comparing it to Star Wars Return of the Jedi.  I think that, for a kid, ANY kid, on any range of the spectrum or off of it, that that idea and coping mechanism or considering your loved one returning to the Force and that someday they can visit, all sparkly, and continue to offer you wisdom, is awesome. Really. I don't see that that conflicts in any way with the Truth of the Gospel of Jesus Christ.  I totally think that the concept of returning to The Force, though perhaps slightly different than the way we know things to be as adults, is a great one to understand for children. 

I'm Latter-day Saint, (ie, mainstream Mormon, lol) and our concept isn't the "same" as that, but similar. I have no doubt in my mind and heart that, for example, though I do not see my grandmother, that she continues to love and care for me in a very active way.  There are times that I feel very close to her, and it helps to continue to solidify that knowledge in my heart.  I do not doubt that I am watched over, not in a nebulous "we prolly have a guardian angel" kinda way, but in a very acute, very real, specific way- that my grandmother, my great grandmother, my brother in law who recently passed away, that they watch and protect us and continue to care for us after death.  I think many of us have had similar experiences, but we do not talk about some of them, being sacred and not to be shared in this kind of forum.  However, I think it is important to share that I know that my grandmother, Nomi, has a spirit life, and that she someday will get a new and renewed body, with no pain and sickness in it, and then I will be able to hug her again. And I can't wait for that day to happen... though I will happily wait for it.

I think it's very hard for children to think of death as a continuation, because we talk about the dead in the past tense, because we cannot talk to them in person, and because of our own unresolved grief.  I think that, for my family (high functioning in general, but with the addition of Lyme disease, which amplifies symptoms in the two effected children and my DH) one of the most helpful things has been to discuss our dead family members frankly and to remember them often, to speak of them as having had a body (past tense) but still having a spirit (presently, living and waiting for their resurrection) and then that they will eventually have a renewed body with no pain or sickness ever again (important... as my children are logical thinkers, if I say "will get their body back" they will think of zombies. Words can trip us up sometimes).  Also, it was a great help to us to post a copy of the grief cycle up so our older children could see it, and to talk about how mourning is a good, and natural process. It has nothing to do with how much faith you have, you are not broken for feeling sad, and it "will be ok" (-- that it's not ok NOW, but WILL be ok sometime, which every child, not just aspies, need to know... and I need to remember, too. I like that concept from the comments on SRMM's site... we will be using it in our family).  It's important to remember that it's also ok to feel our feelings now, and then we can process through the cycle.

After my brother in law died, at the age of 21, it was particularly hard for my daughter, who was five at the time.  She still has a picture of him on her bedside dresser, holding her as a baby, to remind her of him, and sometimes we still sit and feel sad about him together.  I feel that it's important for children to know it's ok to acknowledge their feelings.... like, it's ok to feel sad, though it might not be ok to hide in your room forever, crying;it's ok to be angry, but not ok to hit others when you're angry, etc.  When our beloved little friend, Ella, died in a dui accident in the spring, it brought a rush of new questions, a rush of new grief, and brought back the old grief as well. 

One thing that helped us and might help you, should you need it someday, is a common metaphor we use in our church for helping people, especially children, understand  life an death.  I hope a portion of it will be useful to you and anyone else who might read this someday.  

We will take out a glove, a driving glove or a winter glove. Then we show the child our moving hand, and explain that our hand in this story is like our spirit.  We have a spirit before we are born, and it looks like we do and it has the same likes and dislikes, because the spirit is US, just before we are conceived and born.  We call this our premortal existence, because, of course, it is before our life on Earth, our mortality.  We chose to come down to Earth to get our bodies, and to learn and grow so we can try to become more like our Heavenly Father. This is called mortality, because we are mortal, which means alive for a time here on Earth. 

At this point, the teacher will put on the glove, which represents our getting a body in our Earthly life. We continue to explain that sometimes after a long while, our bodies can get hurt in such a way that they can't heal, or we get very old and our bodies become sick because they are wearing out. Our bodies in mortality aren't meant to last forever. (For us, we had to include getting hurt in a way that cannot heal because of our young friends were killed in was specific to us, and perhaps would be much more comforting to a child whose grandparent had died to explain about being old and our bodies eventually wearing out...) 

Then, the teacher slips off the glove, and explains that when we are done with our earthly bodies, they die, but our spirit (like the hand inside the glove) continues to live and move, and still has a personality, and still thinks and feels... just as it did before we came to Earth in mortality-- but still having the knowledge, the likes and dislikes, and the memories of our time on Earth.  But, we explain, though our body is dead for a time, and is buried in the ground, and though (as my logical children of science obsession needed to remember) it might turn back into soil eventually, when Christ comes to the Earth again, everyone will be resurrected.  At this point we put back on the glove and explain that it will not be just our old body, with all the aches and pains, but it will be our old body renewed, and will look like us, only better and stronger, with no more pains.

Did this help?  Yes.  Did it make the pain go away?  Nope.  Should It No. Did it help with the continual questions?  Even Yesser. It helps to have answers, and to have prayed about them and to know that this explanation, of premortal existence, mortality, death and resurrection, is True... and it helped for them to know that their Dad and I could have great faith that these things are true, yet we mourn, also.  

The remaining sadness does show up at the strangest time, and we do still discuss our sadness often, even after five years.  But I think it really helps them to know that their uncle is still caring for them and continues to love them very much, and that when we talk about him, we use "Isaac is,"  and "Isaac really loves that kind of play,"  and "Isaac taught soccer, too, when he was a teenager," and all of the things that help our Isaac to remain a real person, not just in our past, but in our present and future. It helps that Ella's family wants to talk about Ella, doesn't repress that memory and pretend the child lost never existed.  We talk about Ella, because just as she was our friend, she is our friend. There's always this slight pause at events when our sweet friends whose daughter passed away bring up her name, or a child nearby does.  We all , as a community, have a pause in our thoughts, as if talking about the dead will cause grief to the living.  I am so grateful that my dear friend, D, and her family make a point to talk about our sweet Ella, because she is still a real person and still loves and lives... just not in mortality any longer.  We have to be less filled with Renaisance era concepts of Death, because they are false, and yet so ingrained in our culture here in the US, and in other countries as well, that we think more of Death as a Halloween creature in hood and bearing a sickle, not as an event that brings us to the next sage of existence.  When our little ones are bombarded continually with one image, that of the hooded spectre, and NOT reprogrammed to understand the truth, they are harmed spiritually, and much more prone to getting stuck someplace in the grief cycle instead of being able to healthily process our way through it.  And, as someone who greatly admires my friend D, and my MIL and FIL who comforted the mourners at their own son's funeral, not in that they were not sad and missing him, but in that they had received great peace as a spiritual gift given to them, I hope someday we can eradicate the false ideals and replace them with true knowledge that death is part of the journey, but not the final resting place.

My Mother in Law, who lost a son at his birth also, has an Angel tree each Christmas.  We carefully put an angel ornament on it for each child in the family. Not each living child... each child.  The family is only whole with everyone.  Talking about these uncles who are not living anymore helps the kids remember that their family loves them, ALL their family. It helps them to not keep the worldly concept of grief,  but to replace those impossibly untrue spectres of darkness with Truth and light.  

Grief is much harder to process for a person of logic, like my little ones (and spouse, and his siblings) because much of what we learn from seeing and reading in the world in general not only seems illogical, but FEELS illogical to our spirits.  By processing through the grief cycle and learning that sometimes we can get stuck in one of the stages, and that we can go backwards and forward until finally we get to a place we can accept the death... this is important.  We must be able to feel what we are feeling, and know although it isn't ok yet, it will be.  

We were made to mourn... perhaps it is our pressure valve. But these sweet ones who have communication difficulties, they have to be able to process in their own way, at their own time. They need to know that we ALL mourn, that there's no "appropriate" time to "get over it," or be done with mourning. They must be taught that mourning is not because of lack of understanding, or lack of faith.... but because we miss those we have lost, and we have a longing to be near them again, as we someday will be.

Much love, and stuff- Tamar

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