Potty Training a Child Without Lyme...

Is So Different Than training one with Lyme disease. My two older children, E and A, both have Lyme (infected in the womb), although we didn't know what was wrong until A was two and E was four.  The monthly fevers, the crying, the random rashes that doctor's scratched their heads over and said "weren't contagious, probably not a big deal," (but they were), the throwing up, the fatigue and meltdowns... the amplification of every regular thing that two and three year olds do... that is wearing enough on a family.  Add not being able to figure out WHY the 103 degree fevers happen once a month --I used to time them.  We had a big calender, and I could accurately predict within two days when A would start having night terrors and bed wetting and screaming spells, followed by sunken looking eyes and the big fever for a couple of days. Our docs? Still baffled, until WE told them what was wrong...after my diagnosis. All incredibly demoralizing to a new mom.

But it was also strangley demoralizing as a mother to have a three and a half year old who was not potty trained.  We knew they were smart. We knew they were capable. We knew they were sick, too, although we didn't know why yet, when E was that age. Sir was working from hom then, so we had not one but two adults (one able bodied, one, meh.) working on this project. But, although both children, in their own times, trained beautifully for two weeks out of the month, then they would start in with accidents and continue into the fevers, with everything falling apart. Every month... two weeks of training, one week of nastysick, one week of recovery/starting over, lather/rinse/repeat. Nevermind my own sickness- who cares about training when you're too sick to be awake? Let's watch Dora in the recliner while Mama nurses the baby and sleeps, k?

And so... both of my older children trained shortly AFTER they each turned four, when they finally could manage to stay dry all day (mostly) and through the night. SO, when my second child, A, started training at 2, my first child, E, was still in diapers, at 3.7. They still had accidents until they were sevenish, but mostly finished training at four.  Two long years, each, overlapping with both training during one of the years. Yowsa.

I felt like a failure as a mother... why could I not get these children potty trained?  But at the same time, I felt restrained from doing anything drastic about it, no major missions or yelling at the little ones.  It was jsut as frustrating for them as it was for me.... well, almost. I could see how hard they worked at this goal, how much they wanted to be able to do it... and how frustrated they were at being unable to continue when the sickness began.  They wanted the joy of being trained almost as much as we did.

Pause four years, and then enters little mr. e- or, Captain America, as we call him.  Third child.  Post Lyme treatment for me.  And, so far, he's symptom free, and just turned two. 

Potty training this one?  Piece. Of. Cake.  He won't wear a diaper and wants to be naked, but he also rarely has accidents.  He happily uses the little or big potties interchangeably and tells me when he needs to go. He refuses diapers because he really wants to learn. Is he just a merry little soul? 

The lack of Lyme, to me, is a huge difference...  there is continuity, no stopping and starting, no giving up as he lies limply in my arms burning with fever.  You can't forcibly train a small one as they lie limply in your arms burning at 104 degrees...even if that is regeur for your family.  This time, I'm not doing anything differently... except maybe not trying to start him training before the age of 2, which is making a difference as well.

So, what's the big deal?  Why am I telling you this, all about the differences in toilet teaching a two year old without Lyme?  Someone needs to know it. I wish I had known it. 

If you're training one with Lyme this time, it's going to be different than if you've trained without.  I was so blessed to have sisters and mothers who didn't push us, who knew something was different with our children, no matter how smart and wonderful they were, that it didn't matter if they just weren't trained yet.  The only emotional beating I got was from myself, not outsiders looking down at me, asking why MY kids weren't trained when their 18month olds were.  Even if I thought they might be. 

I want you to know, if you are facing this trouble, if you have a child of any "difference,"  if it is Lyme, if it is ADHD, if it is any sickness from Babesia to wherever, that it's going to be ok.  If it is possible, it will happen, eventually. If your child is so ill that it is not possible, and it doesn't happen, and they have diapers forever...well, we do what we have to do.  But, it is no reflection on your parenting if your child is one of the thousands who look "average,"  seem "normal," and have outward appearances of every other child their age, and still has accidents or need nighttime care, or who is embarassed for their bladder still trying to catch up with the growth of their bodies.  It just doesn't matter. There are far more important things to focus on in life.

I did have one distant great uncle who, seeing that my E at six was still having periodic accidents, recommended that we treat her like he treated his oldest son, who, when he had an accident, would be shamed for it, then squirted off in the yard, naked, with a garden hose. I was horrified and embarassed... not for my daughter, but for his then grown son.  It amazed me that uncle could, in one breath, recommend childrearing practices to me, and in the next breath, say that his same son was doing much better in rehab (really), his plugged and tatted and heroined self luckily recouping.  I wonder, in the end, if those two stories were related, after all?

My two older bairns are bright, happy, smart, healthy as possible (when possible) and diaper free (at eight and ten, thankfully), and no longer randomly pull their pants down in the back yard while screaming "I have to PEEEEEEEE!"  (yes, startling the neighbors). 

But, wow. It is so different to be training a (hopefully) Lyme-free child. 

Kinda freaks me out, though. I told Sir that I'd consider thinking about maybe sometime us having one more child, but only once little e was both weaned and potty trained, because if I'm going to spend another year in a wheelchair puking like I did during the last pregnancy, I'm not going try to potty train a child at the same time.

Do you think e heard me?  And wants a mini-sib? And do I have to actually consider it once he is trained?  (ack?!  Maybe?)

Body Issues

I have so many, from my well meaning (and really generally wonderful) Dad mentioning stretch lines on my legs one summer in high school (I was 137lbs and 5'8", btw, and though we didn't know it, was developing lymphedema) to kids in middle school calling me thunder thighs (evil children. Can't we just skip middle school, it's when so much of the damage to our psyches happens and it takes up until our thirties and beyond to recover from the idiot comments made during that fragile time.) 

If you don't know much about lymphedema, your body doesn't properly move around the lymphatic fluid in your system, and you retain a LOT of water. Like, a LOT lot.  When we first started the treatments (which include binding the legs up in bandages firmly to make them work better) we got over three liters of fluid out of my CALVES. SO you can imagine the rest of me... I still am the same height as high school, but now weigh close to three- 3!!!-- hundred pounds.  I hate it, and there is no magic pill to use, no exercise I can do to diminish it, no diet that will work.  I just get to be bound with bandages like a mummy. Thankfully, I've graduated to expensive spandex bodysuits under my clothes now. We call them my supersuits. They make it so I can walk. 

But the point is this:

It still makes me uncomfortable that my husband thinks I am gorgeous.  Drop down, flat out gorgeous.  This is NOT a problem, right?  To be sexy to my husband of fourteen years, who is bluntly honest in everything else he says, and basically is hardwired to find it impossible to lie (think extremely mild aspberger's) and yet every time he caresses me and tells me how incredibly hot I am, I have a little voice in the back of my head that says I am hideous and disgusting and how in the world could he think that I am beautiful?  I see myself in the mirror, and remember how I thought myself fat when I weighted less than 150lbs, and realize that I will not in this life ever see that side of 200 again... and I just have SO much trouble believing him that I could possibly be desireable.  But it must be true to him.  He really does love and find me extremely sexy, and I doubt it's because he has some perversion.  He loved me little when we married, he's loved me while sick and sicker, and he still loves me, though he doesn't like a lot of things about how I can move, my pain level, etc.  yet he thinks I am beautiful.

And yet I cannot psychologically believe him.  

And that's my problem, not his.

I've been thinking a lot lately about what it means to be Bound to the Lord... mostly because I do a lot of binding myself in order to function.  No, there's no sdbm in this house... I just have lymphedema, and that means a lot of binding and unbinding. The flow of lymphatic fluid in my body... well, like almost everything else in my system, it doesn't work correctly, which means less immune system function, more pain, and a lot of uncomfortable heaviness in arms and legs. I hadn't prorgessed to the point of weeping sores or my legs beginning to die when we found this problem, but we didn't figure this out until a few months ago, although the issue has been around for years, (probably since college, when I started gaining weight and couldn't do anything about it).  An interesting function of lympedema--you cannot lose weight no matter how hard you try, because msot of the weight isn't _weight_, it's lymphatic fluid pooling in your body. You can exercise, and you can be healthier, but your shape and weight will probably not change, unless you are continually bound, and then, not very much. Gross, and very frustrating, but scientifically fascinating.

The treatment is to be bound-- gently at first, and then more firmly-- with layers of fabric and bandages, to force the fluid to go back where it is supposed to be.  A semi- stretchy mummification process.  At the clinic where I was taught to wrap my legs, they explained that this problem does not go away after treatment... I will deal with it for my whole life, and I will need some sort of binding and compression daily to be able to function.  This was a new kind of grief cycle for me to being to process....summertime shorts WITH extreme support hose underneath, no dresses without tight bandages. One of those times you really figure out how vain you still are, despite all. I had thought that most of my vanity, weighing a hundred pounds+ more than I was in college, having a limp, having neuropathy variations in my brain for memory and mood, having Lyme in general, was burned out of me, as it should be.  But....

I dreaded being bound up, being tied up in all those bandages. But, as all other things with these sickness, the desperation of the pain and aches and heaviness drove me towards the hope that maybe, just maybe, it could get a little bit better. I bought my super-suit-- a compression tank plus a spanx-like short, variations of the ancient corsets women abandoned after the 1950's-- and began wearing it daily. I began learning how to wrap my calves and thighs in layer upon layer of hot, tight bandages.  And you know what? 

It was wonderful.

Not the time it took to do, or to unwind to shower. Not the thought of having to do that daily for-ever.... but, instead, the binding itself. 

Imagine for a moment, that under your clothing you are wrapped from hip to toe in ace bandages.  Not too tightly. Firmly. They begin gently in the therapy, so you can get accustomed to being bound bit by bit. Under that, you have a layer of polyester batting, like quilters use for blankets, under that layer a cloth layer wicking moisture away from the fragile skin itself.  For someone who gets as claustrophobic as I do, the visualization of this process reminded me more of ancient Egypt than of healing.

And yet...

And yet, it was wonderful.  It was like a firm, gentle hug.  Itching was a bit inconvenient (thank goodness I bought the lymphodema ready-wraps, which are SO much faster and easier than wrapping and unwrapping) but not too distracting.  The most interesting part, though, was how I FELT.  My legs, my hips, my back, even my arms which were still unbound, no longer fetl as heavy and unusable. I could move, and though it was not pain _free_, it was with considerably less pain than before.  I could do exciting new things, like clean more of my house, and better care for my children. Walk upstairs.  Despite the embarassment of seemingly gigantic leg bandages (I've still not bought the two or three hundred dollars worth of super strong 20-30 support pantyhose I need to get...budget budget budget...) I remain bound at church and home and stores and have adapted my wardrobe as best as I can. If I leave myself unbound for a morning, or afternoon, the pain once again increases, and my functonality disappears...

So here's what I have been thinking this last month of being bound. 

Continually, the concept of covenants and being bound to the Lord come into my mind, and I think of that same process we go through when investigating or just beginning to understand the truth of the Gospel of Jesus Christ.  First, we contemplate all of the seeming restrictions... no alcohol? No cofee and tea?  No wanton sex ... well, that one isn't difficult for me, but I could see how it would be for some people more accustomed to living in the world and by the world's standards.  We go to church in a three hour block on Sunday morning?  And accept callings to help out others?  We pay a tithe of ten percent of our increase in earnings?  (that's a stumbler for some people... they have not yet learned about God's math.) All of these bandages, though designed by the Creator for healing and comfort, seem confining and more like tethers.

And then, we put them on....

And living the Truth is different than the world's perception of living the truth.  The benefits, the peace and comfort, more than outweigh the vanity option, or our previous idea of convenience.  Before much time passes, we realize it is comfortable to be bound to the Lord.  Before much longer, we realize that we desire to be more firmly bound to Him, to His precepts and truths.  From the outside, someone might think "wow, how pitiful that they have to be bound like that....I'm glad I don't have to be bound," but all the while may be suffering the same pains, the same illness, the same limitations and not know the peace and warmth and comfort being bound can mean. 

Like my outward bandages, my inward binding is a choice.. I can choose daily if I desire to be bound or cast aside my neopreme and velcro concoctions and walk away, seemingly free.  But before many hours pass away, I will be limping, dragging, crawling upstairs to rebind myself, the damage having to be undone, the pain not subsiding immediately but over a period of hours (or days) from my own neglect and refusal to obediently be bound.

How many of us do the same with the bindings of the Lord? How many of us daily seek to be less bound, but hope to continue to have the same blessings of being bound more tightly, without the inward trappings and outward trappings that signify that covenential binding?

This is what I've been considering these past few weeks, and I hope it is of blessing to you.  May your binding be ever more increasing, that you may heal inwardly as well as outwardly in this continued journey.

Fresh Courage Take

So for 2011 I'm going to start doing what everybody keeps telling me to do, and begin to blog.  I'd like to think that I am told to blog because I am funny, or smart, or have something interesting to talk about, but probably it is more that I have, since birth, been full of words, all crowding to get free.  I am, however, sometimes quite ill and also my jewels are also quite ill, which means my capabilities will be at best sporadic, hopefully vaguely intelligent on good brain days, and typed with a preschooler on my lap.  I could use that last mention as the excuse for my poorly typed words, but realistically, it's because my fingers do not type words that I've known how to spell since fifth grade in the correct order, and periodically I miss one when I check.  Which would be slightly less embarassing if I didn't have editorial experience.

If you wanted pictures, this is probably not where you want to be.  If want a beautiful story about how to DIY crafts, illustrated with professionally done pictures, (I do too, truly), this is not your blog.  If you have, however, Lyme disease and/or have a family member with Lyme disease, perhaps I can be of some use to you.

Word have always been my chosen medium.  Since I could hold a pencil I have needed to write, and therefore, the progression of this disgusting bacteria throughout my system, creating complications in the neural pathways which create strings of words and communication capabilities is particularly both ironic and frustrating.  But, having a portion of my brain returned to me by a recently completed round of IV antibiotics,  and having five years experience in the ringamarole of Lyme treatment options, as well as 22 years of experience with the detriments caused by this disease, diagnosed or undiagnosed, I feel it is time to begin to contribute what hope and opportunity I have to the discussion of this disease.

I am a 35 year old wife and mother of three small children, two of whom have tested positive for Lyme, having been infected inutero.  I am Latter-day Saint, and have great faith and hope in Christ.  Hope is what drives me forward daily, a continual refusal to collapse under the weight and strain of the pressure from both within and without my body.  My name is Tamar, and I hope that something I have experienced can be of use to you. 

The name of my blog is an ongoing inside joke... You know that when life gives you lemons, you make lemonade.  Everything we do in our household, who we have become, is what happens when life gives you Lyme disease.  Thus, I hope that my small contribution can offer some aid to whatever sorrows and illnesses are plaguing you and your family.  I do not have much, and some days am nearing empty, but in my hermitage I will give all that I can.


I contribute as a former editor and current board member at Segullah.org, which, if your hope meter is running low, you should definitely check out.  It is a LDS women's literary magazine begun six years ago, and is of both the highest quality authorship and doctrine, and I love it dearly.  One of my greatest sorrows has been becoming too sick to be able to further serve as editor, but, with Lyme, you take what you can and return whatever is possible.  Just being able to associate with the women who write, blog, and editor there is a gift to my life.

And now... to change a sick baby....