April and May: Pauli by Perludi

April and May: Pauli by Perludi: This design is so beautiful for a kids room. A chair that can become a bench and also a shelf, when putting two of them on each other... My children just walked into the room and immediately exclaimed- COOL, Those people must be really good at DIY. Can we have some? (Yes, I am a little bit in love with this kind of design... so clever, almost a visual physical pun...

Sun Scholars: Sharpie Tie-Dying

Sun Scholars: Sharpie Tie-Dying: We might go to the Dollar Tree for t shirts BEFORe Conference tomorrow and take care of business. This should entertain all three for at least a half hour or forty minutes....

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 accidents...it 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

Empty and refilled

I accidentally on purpose left blogging in the spring after the death of a close friend's child. She has been killed by a drunk driver, and although the sweet family was very strong, and still is extremely strong,  the power of that one car struck not just the child and her father (who lives), but the lives of my children and nieces and nephews, who needed near constant care. My husband didn't realize he was freaked out, but he had to call every afternoon several times a day to make sure that all was well with me and the kids.... yeah, he was freaked a bit.  My daughter, Edie, and I had many MANY talks about heaven and her Heavenly Father, and how His love was encompassing, and where her little friend was, and ...and then there was our sweet son, Adam, who chose oblivion, but was relieved when his friends, the girl's brothers, returned to cub scouts.  So, I forgot to blog. Anything.  But now I'm going to try again, and we'll jsut see if I can get my lyme brian in order.  ALSO....TADA!  I'm going to talk about some of the craftiness involved in my life as I try to remake our house.  It's a little cluttered and overwhelming... as are our lives post Lyme.... so hopefully with the help of some lyrica and a lot of pain killers, little remodels often instead of big ones periodically will make some big differences. and I'm hoping to share! So... back to business, and no more procrastiblogging...

Pause Button

I had a friend tell me recently that she wished there was a pause button to life.  That she could tell the world to stop spinning around her for a little while, and then she could catch up. I think we've all felt that way sometimes, but it occurs to me that I've had that pause button pressed so many times.  It's called Lyme, and it pauses everything in your life.  Unfortunately, though, it does NOT pause everything else.  While you sleep, while you are ill, while your family is ill, while you stay at home on the couch, everything else moves around you. It's like a strange variant of Sleeping Beauty.... she doesn't age, but the dust accumulates, she doesn't move, but the world around her sleeping place whirls and changes exponentially.  A fast motion recapture video in the making. 



This week, this re-experience, has once again shown me that.  Baby e is sick  Not regular sick.  He keeps patiently shaking his head as I ask what is wrong:  Does his head hurt?  No. Does his stomach hurt? No. Gut?  No. Ear? No.  He patiently keeps shaking his head, ever and over and over. 

Why am I looking for a reason for him to feel bad?  Because I know what it Means when  one of my children starts running fevers of 102, 103 with no visible reason or illness but general malaise. And while the little captain has thus far avoided all the symptoms his siblings had as babies-- the 103 degree fevers once a month,  the strange spots that look like thumbprints of redness that don't  rash or seem to bother them, yet move around their bodies,  the constant illness, the dark circles under their eyes-- he's started having more and move illnesses lately, and is beginning to show the signs.  This, for a mom, although inevitable to our household perhaps, is heartbreaking.  To know that once again, this poison is circulating in another sweet little body, is a personal, private tragedy.

and yet, I know that, even knowing these difficulties, that my little ones chose to come here to Earth and chose to participate, not only in life, but in life with me, a very imperfect mom and rather bad housekeeper, who does not craft with them daily and go on hike and expeditions.  They saw, as spirits prior to joining us on Earth, the whole picture, the goal, and knew that in the end, the monthly pain and the constant sickness would be worth it.  They chose to come, knowing that we might not be those people who can say "you TOO could grow up to be President!"  Not these kids. We don't tell ourselves that we can do ANYTHING.  We do, however, tell ourselves that any path our Father has given to us, we can follow, and follow with great faith.

I came across a quote today on a mommyblog, and I wish I could quote the whole conference, but I can't find it (yet).. However, the quote was from BYU women's conference, from Elder Bednar. (hopefully the link will work, lol)   It is as follows:

Elder Bednar  2011 BYU Women's Conference.

“I believe many, if not all, of the most satisfying and memorable accomplishments in our homes, in the Church, in our jobs and professions and in our communities will be the product of this important spiritual pattern — of small and simple things,” Elder Bednar said. “We should find great comfort in the fact that ordinary people who faithfully, diligently and consistently do simple things that are right before God will bring forth extraordinary results.” ...

“The spiritual pattern of small and simple things bringing forth great things produces firmness and steadfastness, deepening devotion and more complete conversion to the Lord Jesus Christ and His gospel,” he said. “As you and I become increasingly steadfast and immovable, we are less prone to zealous and exaggerated spurts of spirituality followed by extended periods of slackness.”

Ordinary people doing the same things over and over, with the intent to become closer to God-- this describes Mommyland perfectly, if we're trying to do it correctly.  Faithfully, diligently, consistently.  I might not have, for example, the most magnificent vacations spanning every church history site in the US, or the magical FHE's that are passed on  by my children and their children's children for generations to come.  We might, on occasion, call our Monday night endeavors Family Home Fighting, not Evening.  BUT, by consistently doing all the things we are trying to do, we are becoming consistently, perhaps incrementally, better and better at following His way for us.  And perhaps sometimes those increments seems infinitesimal  in comparison to the swirling of the world around us,  like that pause button has been pushed. Like running through knee deep water at the seaside.  But we are growing spiritual muscles by simply sustaining the pace, however slow it may be.

I'm heartbroken that my baby son has begun to show little spots that look like my coinfections, that his dark eye circles show even while he takes four and five hours naps these past three days.  But as long as I can teach him, by word and example, to keep moving one small and steady step at a time, together we can rejoice in being ordinary followers of Christ. And that will be enough. 

Shaky Shaky Shaky

Ok, so let's talk about the palsy bit.  Really.  The shaking hands and fingers and legs and stuff.  Not everybody who has Lyme gets this, but it was one of my first symptoms.  It came, lasted for years before we figured out what was going on, and then went away....I thought for good, I thought, I conquered this thing. YAY!

Only, it wasn't gone. One of the weird things with Lyme is that when you're in a good treatment, often your symptoms reverse order in their process away.  Weird neurological stuff, I personally have no idea the medical reasons, but something with the plaque in the brain, yada yada.  And sure enough...back came the shaky hands. One hand worse than the other for me... all my worst symptoms are all on my right hand side, and again, no real reason we know why.  Regardless, once again I got the palsy thing, and then it left.  

Except, it didn't. It was back last fall, and was one of the reasons I began searching for a doc that would do IV therapy. I found a kind one in DC area, who was reasonably well read on the whole issue, and gave me a couple of months of IV.  I knew it wasn't going to last forever.  Seriously, I know, at this point of the chronic infection, it's not going anyplace.  But I figured, maybe a couple of good years, then I do IV or combination oral antibiotic therapy again, no big whup. 

That was December.

My palsy hands returned three days ago.  So....five months.  5.  Not even six.

This is a major setback.   I'm not sure what to do now.  I'm loathe to even talk about it with Sir.  Frankly, the conversation with Sir will probably go like this-- "Sweetheart?  I think the palsy in my hands is back."  Sir: "cool."  That's it, basically.  That is the convo.  He's not really a talky type.  He'll process it in his own time and get back to me with a plan.

But in the meantime, I am expecting what comes next.  The next part is the leg.  My right knee will begin swelling more than usual, despite the lymphedema stockings and redi-wraps.  I will spend more and more time asleep... which has been happening already.  Already I've seen the nasty mock-sinus infections returning.  So, what to do about it?  What to do before it comes roaring in, a private tornado to my mind and soul?



Rage against the dying of the light is correct.  Rage, Rage.  My mind, my creativity, it is my light.  This thing has tried to steal my words, my poetry, my music.  It has tried to steal my relationships. It has tried to steal my joy.  but I'm stronger than any of these myriad bacteria which infest my body and mind. 

One of my greatest capabilities, for good or ill, has been defiance of will.  Hopefully, I have learned to be courageous instead of merely obstinate.  I keep my will my own, while submitting my Will to my Heavenly Father.  He has never given me this pain for more than I could bear.... although the last pregnancy was close, and often, like many others, I wish He didn't trust me with quite so many adventures. 

I figure, in the end, if I cannot sing, I will write.  When I cannot write, I will paint, and when the words blur together, I will read.  Thank heavens there are good audiobooks available, although I'll probably have to pay off the library fines my children have incurred by losing a couple more books this month, including one we donated to the library in the first place.  (So I have to pay the library triple the cost of the book, for reshelving fees, for a book I decluttered from my bookcase. Really.)  When I can no longer stand up to clean my house, I will roll and clean it halfway (who am I kidding... what's halfway from the third I already do?) and then when that's impossible, I'll be even more grateful for my chair lift and the housekeeper I will find someday.  hopefully by then, Mr e will be in preschool, so when I sleep all morning by accident after the kids go to school, he will be in no concern or danger and perhaps will still be learning something. 

My dearest fear, though, is for my beloved E and A.  They see this constant worry and struggle, and they know this same bacteria is lying partially dormant, partially attacking in secret, in their own systems.  They know what is coming.  Evva asks me, "Mama, do you like being a Mama?  Is it too hard?"   Already she is beginning to see the differences between the way we live, and the way her friends live.  Our house is not as disgustingly dirty as Sir thinks it is, nor is it as clean as I would like... especially now that the Captain is potty training, sometimes inefficiently.  But, seeing how her mother struggles, even when I assure her continually that, yes, I love being a Mama, yes, it is hard but it's a good hard (mostly), she knows, all the hard she already feels is going to become amplified by the years and bacterial overgrowth.  How can she begin to think about someday having a spouse, having children, when she will by then know that she could share this sickness with them as well?  But how could she consider anything but the joy of a beloved and motherhood, even in all of the extremely hard parts? 

My goal must be to rejoice in motherhood, that my children see me bearing my trials, but know that they are not among them.  They must always know that they are firmly on the blessing side. 

I've been missing.. but not totally...

So, my computer exploded. And the cobbler's children have no shoes, ie Sir has been really busy with working on other computers and software, but not the desktop yet. So I have to goof of on the laptop...which you Know is a problem  because little Mr e loves the great sound the keys make when he slips him fingernail under them and flicks them off "click click click" onto the floor. Sir does not like that sounds as much as little Mr does.  I'm typing on a keyboard that has three keys missing as it is.... thankfully not crucial keys, but we think the baby ate them.  So.. late blogging.
But I do have a great website to share... I've been loving it all morning and I couldn't wait to blog about it.  I LOVE this site.  LOVE it.  Am so proud to think of the sisters working on it and the good work they are doing.
What is it about?  Redefining our personal Beauty not on our body shape, size, weight, or outward appearance, but on our divine nature and true worth.  But in an intelligent, literary way, scientifically showing and explaining the comerical statistics facing our children and selves daily, objectifying women and even little girls.  And  so well done that it's not only readable but enjoyable.



Want to read it yet?  Hope so- you won't be disappointed, you will be fascinated, and you might change a few bad habits for ones that make your heart and emotions sing!



Here you go:
http://www.beautyredefined.net/

Enjoy!