the invisible victim

My best friend - whom I've known since childhood - is facing a very difficult time in life.



Her loved one was recently diagnosed with Alzheimer's and each day is increasingly more challenging than the last.  While I thought taking care of premature newborn triplets was the most physically, emotionally and mentally exhausting experience possible - serving as the primary caretaker to someone with Alzheimer's is definitely in the same rapidly soul-depleting ballpark.

The all-consuming level of effort required to care for someone with this grueling disease is intense. My sweet friend cannot leave her husband alone for more than an hour at a time.  If she does, she runs the risk that he will venture out looking for her and get either hurt, or lost, or both.  On those rare instances she does go out, she leaves him notes about where she is - and what she's doing - and when she'll be back. But sadly, her brilliant man - who can still rattle off facts and figures from year's past - doesn't understand. He insists that he doesn't need a babysitter - and is offended whenever his wife calls for people to come stay with him, while she runs errands.



She usually cannot take him with her, either, because he gets confused and uneasy. He also gets tired and frequently needs to lay down and rest. And during the evening, when my friend should lay down and try to get some much needed rest herself, her husband will be up several times throughout the night - often for the entire night - asking her questions about where he placed his car keys, or wallet, and where is he and how long will he be here?  Is he going to be late for school?

Where are his parents?



My friend adores her husband and she tries so hard to be patient and kind.  But his questions continue and continue, throughout the night and in to the next day and all through the next day and in to the next and there is absolutely no reprieve for as far as she can see.  It's not surprising, then, that she feels herself getting frustrated and overwhelmed.  On the one hand, she knows that she is providing him the absolute best care that he could possibly receive.  But on the other hand, she knows that the price for this care comes at her own expense. Whenever I talk with her, she sounds completely worn out and sad, which breaks my heart.



Within the past few days, my friend has finally determined that she really needs help to take care of her husband and that help is beginning to take the form of an assisted living facility / nursing home.  But now, in addition to feeling exhausted, she is also conflicted and guilt-ridden with feelings that she's abandoning him. Even when, by all accounts to those around her, this is the most logical choice. Although, if she pursues the assisted-living facility option ... it could still be several months before he is admitted.



What worries me and keeps me up at night, is that caregivers are at an increased risk for illness and depression; especially if they do not receive the necessary support from family and friends.  I've done some research - but am really at a loss for what exactly the best support is that I can provide to my friend, especially since I no longer live directly next door.  If anyone has any advice or suggestions, I'd be forever grateful. And if not, please keep the victims of this disease and their caregivers in your heart.

They are facing an incredibly lonely battle, each and every day.

two weeks in

So this is the letter that Elizabeth's teacher sent home with her on Friday afternoon...

When I showed it to Henry, I said, "See, THESE are the kind of letters that I want to see coming home with you, too. Now tell me, did you have any trouble at school, today?"

He looked at me and very seriously said, "Well, the teacher did make me sit in the time out chair once." Then he scratched his head for a moment and clarified, "Um, you better make that twice." 

Yes indeed, children are unique. And I suspect with Henry, I'm in for a ride. 

While at church on Saturday night, the children were asked to draw a picture of a situation that caused them to be fearful that they overcame with courage. Elizabeth chose to recreate the scene she'd experienced at the gym, earlier in the week, when she confronted the bullies who were teasing her brother.  I love how she is standing in front of a tearfully forlorn William, blocking the balls that are being thrown at him, with a bubble above her head that reads, "What am I doing" followed by seven (7!) question marks - because this is clearly not at all where she expected to be.

I also love the Eskimo kiss she is giving a tearfully grateful William once her demonstration of great courage warded off her brother's tormentors. 

These children are so lucky to have one another .... and I'm so lucky to have them. 

Even if they are responsible for me being on a first name basis with the Principal. 

the excellent adventure (part 6)

The alternate title to this post might be, "The antithesis of peace like a river."



Why?

Because *I* didn't want to go inner tubing on the last day of our vacation. I wanted to go white water rafting. Or kayaking, or something a bit more exciting that would require more physical exertion than floating down a sleepy river in a tube for half the day. And yes, maybe I was acting juvenile about it but well, there's really no good excuse. Sometimes I'm just inexplicably cranky.

At my lowest point, I said to my family (all of whom were excited about our inner tubing non-adventure), "What about MY wants? I'm tired of thinking about YOUR wants every day. I think it's high time you start thinking about what you can do to bring me joy once in a while. In fact, before you do anything, you should ask yourself, 'Will this make my mother/wife happy? Will this make her smile?' If the answer is no, than don't do it."  My husband chuckled because he thought I had made a funny joke. Except it wasn't really a joke.

I think part of my frustration was that we were supposed to go rafting, but the weather was ominous with a chance of thunderstorms, so when given the option to cancel - we took it. Then we began our drive home and of course the sky cleared up to a beautiful blue and we decided that we'd just make our third annual stop at Zaloo's. We've had great experiences here before, but today? Well, I just wanted something more adventurous.

As we were floating along, with kids splashing every which way and making all kinds of loud noises that I would have preferred not to hear, our flotilla started to head in to some brush along the river bank.  One by one, kids were untying themselves so they could float solo, until the only two tubes that were still joined were mine and Carolyn's.  But when we sunk deeper in to the brush, I told my daughter to start paddling and kicking with her feet. When she wouldn't do it, I untied my inner tube and as I floated off I said, "I can't help you if you aren't at least willing to exert an effort yourself."  Then I got caught in a current and whisked away from everyone.  As I accelerated downstream, I yelled back, "KICK YOUR FEET!" but instead of kicking, she scowled at me and said, "YOU ARE A MEAN MOM!" And yes, sometimes I suppose I am.

Thank goodness when I'm not firing on all compassionate cylinders, Charlie is - and he quickly got out of his inner tube, waded up the river and chivalrously rescued his daughter, while I continued to float downstream and savor what felt like the first peace and quiet I'd experienced on the entire vacation.

And it was good.

the excellent adventure (part 5)

On the second to last day of our vacation, we decided to take on a ropes challenge course. I've done ropes courses before, but they've always been closer to the ground, unlike this one which was located in the tree tops.  Everyone was so excited about this and totally game until we arrived and we remembered that my husband has a significant fear of heights.

But my Charlie stepped up and as we affixed our safety harnesses, he high-fived us and courageously said, "WE ARE SO TOTALLY GOING TO DO THIS AND IT'S GOING TO BE AWESOME!" 

Then he promptly sat down and put his head between his knees and breathed in to a paper bag for a few minutes while we heard our safety rules. Which I'll capture here should you ever find yourself on a 60-foot high ropes course...  

You have a harness around your waist that has a large metal clip on the front. Attached to the clip are two  ropes that each have their own safety carabiner at the end.





As you're climbing and you move from one challenge to the next, you will detach one of your safety lines (while the other remains attached) and place it on the new course; check to confirm it is connected properly; before attaching the second line to the course.





In the event you slip before you have the second rope attached, you will be caught by the one rope on the line.  You must always have one of the two lines attached during a transfer - and once you start on the course, you must have BOTH lines attached, as a back-up failure system.





We had two guides with us, so there were a total of four adults on the course ... one for each of our four children. Once you complete the course, from the very top, you take a 700-foot zip line down and if you're anything like me, you'll scream woo-hooooooooo!!!!! the entire way.







Then you climb the course again, and disembark by a swing that is suspended from the second level. I was crazy enough to go first and had my entire life flash before my eyes in the span of 10 seconds during my free fall and rebound. 

Charlie's entire life flashed before his eyes when he was on the upper level and walked smack dab in to a Golden Orb spider web that plastered itself across the top half of his body. He thought it was just the web until the spider itself - with a body the size of a quarter - dropped off his helmet near his face.

(Why is it that Golden Orbs always show up at the most inconvenient times?)  

One of the rules was that children should under absolutely NO conditions, attach their safety leads to other rope runs. And the other rule was that whenever safety leads were moved from one rope to the other - it would be supervised by another competent adult.



So things were going swimmingly until about three hours in to it, when I was (still) traversing the second level of the three leveled course and looked up to see that William and Elizabeth were traversing the third level - ON THEIR OWN.  

They both have incredible upper body strength - which has been enhanced by a year in gymnastics - and decided that they couldn't wait for people to catch up with them. Even the professionals who do this course all.the.time could not believe how fearless and agile those two were.  There was much yelling - by me - and insistence that they SIT DOWN AND NOT MOVE until we get up there.  

Once I scrambled to the top in what was surely record time for a 42-year old adult woman (but 10X slower than it would take an 8-year old human monkey child), I talked to them about death and dying and how they must not love their mother very much or care at all about her wellbeing because they are clearly going to cause her a heart attack. 

That night, once we'd successfully completed the course and had a lovely pizza dinner and crashed in to our beds, exhaustedly, I listened to the kids drift off to sleep with half finished sentences of how, "This was the bestest day ever and did you see when I ..... zzzzzz."   

Then I laid awake half the night imagining one of my kids falling off the top of the course and what the heck was I thinking bringing my precious children up there? 



As these kids grow up and stretch their wings a bit more every day, I can see that there is danger lurking virtually everywhere and I can't keep them in a bubble.

The best I can do is spend as much time with them as possible, hopefully demonstrate by positive example, have fun, and pray.



Pray: not only for them .... but for the cardiovascular strength of my heart which I need to keep up with them both physically and emotionally. 

one week in

Here's the "Think Sheet" that Henry came home from school with, yesterday.



Whomever first recognized and documented that each child - even within the same family - is a unique individual, was spot-on. Henry's siblings have attended this same school for three full years and across the three of them, have only received two one Think Sheet. Last night, for the first time ever, we also received a phone call from a teacher. It was, not surprisingly, Henry's teacher who told us, "Usually when I ask Henry to listen - he pays attention."  USUALLY? Good heavens, they've only been in school for five days.  

Oy vey, I'm having flashbacks.

the excellent adventure (part 4)

While we were in Boone, we ventured over to a rock climbing wall that was located in the downtown area. The kids quickly scaled it and since they made it look so easy, I thought I'd give it a shot, too.



Insert hysterical laughing.  Kinda like the way multiplication tables aren't so easy for the children; scaling a 30-foot wall wasn't so easy for me.

Especially when I got to the very top and made the mistake of looking down before I started my belaying descent.  Eventually, I made it down and decided that the rock climbing trip to the mountains that we were planning for later in the day would have to be scrapped. Forever.

It dawned on me while climbing this wall that faith really doesn't come easily for me. I had very little faith in my equipment to keep me safe; nor in my climbing partner.



Our belayer, Jenny, weighed about as much as one of my thighs ... so I thought for sure that as soon as I started my descent, my accelerating mass would launch her up and over the top of the wall. Unfortunately, my future as a rock climber will never come to fruition because I enjoy physics and grasp the laws of gravity and inertia a bit too much.



I'm happy to report that I survived.



But speaking of obstacles to overcome and balanced forces ... tonight at the gym, William had his first real encounter with a bully. Make it "bullies" since there were at least three of them.

Charlie and I were working out while the children were in the Kid's Zone.  When we went to pick them up, William was sobbing. Hysterically sobbing. Which is very unlike him because he's a happy go lucky - never let anyone see you sad kind of boy.



As it turns out, there were some older boys there tonight that thought it would be fun to throw a Nerf ball at him. Now, I'm not sure what prompted all this - and it wouldn't surprise me if William was playing around with them initially, and things quickly spiraled out of control.

According to William, he decided that he didn't want to be "It" and asked them to stop, but they just laughed at him and kept throwing the ball and then started to throw it at his face and backed him in a corner and wouldn't let him out.  So he put his hands up and started to cry and they kept doing it, until Henry saw what was happening and summoned the girls, who ran over and jumped in front of their brother who was being tormented.

As the story goes, Elizabeth jumped in first and held her hands up and screamed, "OH NO YOU DON'T!" and then Carolyn jumped in to the fray and yelled, "DON'T YOU DARE TEASE MY BROTHER!" while Henry ran around head butting them and by then, things had diffused a bit, and Charlie had arrived and saw William crying and the Kid Zone supervisors were made aware of the situation and the bullies were identified by the girls who were pointing at them and hollering, "IT WAS HIM AND HIM AND HIM!" and they were pulled aside and talked to while Charlie shot visual daggers at them and Henry pretended like he was going to hit them with a bat.



A few minutes later, when I arrived, William was still crying and the boys had been released in to the general population and the situation was over.  But it wasn't really over for me when I saw how upset my little boy was. So I talked to the Kid Zone Manager and wanted to also talk directly with the boys, but Charlie discouraged it by saying that the gym will manage it.

So we left.  Charlie drove Henry and the girls in one car, while I drove William in another and he cried the whole way home.  His feelings were so hurt he said it felt like they'd ripped his heart out, which of course, ripped my heart out. I told him that this is an opportunity to learn for the next time something like this happens. How will he handle it differently?  And what will he do if he sees another child being bullied the way he was bullied?  Through his tears, we went through a lot of role playing scenarios.

Then I told him about the time I was bullied in 5th grade by a group of kids and I was so distraught that my mother went over to the Head Bully's house and said something to that her that prompted her to write me an apology letter and never bother me again.

As I was telling him the story, I was so upset with myself that I didn't talk to those boys, directly.  I should have.  It absolutely goes against my genetic code to not immediately step in and RIGHT a WRONG, particularly where my children are concerned. AND, I should have summoned their parents if for no other reason than to demonstrate to my child that I've got his back.  He can have rock solid faith in me, his belayer of childhood.

In lieu of my negligence IN THE MOMENT, I called the gym as soon as we got home and told them that I want an assurance that the parents were spoken to about this situation. And I told William that the next time we go to the gym - I'm going to give him a walkie talkie so that if he should feel cornered again, he can page me and I'll come down there so fast there will be a smoke trail behind me.



In the meantime, he's got his siblings.



And it does my heart good to know that they love each other so fiercely.