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Monday, January 18, 2016

I Think He Can...

I've written before about our struggles with medication for our kids. Side effects can be brutal. Ben has been dealing with a side effect from one of his medications that has been gut-wrenching for him. This particular medication causes him to gain weight. The psychiatrist said "It makes him want to keep eating." Ben corrected him, saying "No, it makes me never feel full." I was amazed at his insight.

So this pesky medication. Ben gets frequent blood tests to monitor the effects of the medication on is body. We check his liver, especially. A couple months ago, Ben's liver enzymes were elevated, and his body wasn't too happy about being on this med. The psychiatrist said wait one more month and we'll repeat the blood test.

As usual, at the psychiatrist's office during our last appointment, he weighed and measured how tall Ben is. He discreetly asked me if this was as good as things were going to get, in terms of exercise and portion control. I said yes, this is as good as we can do. Alex and I have always taught the kids about healthy foods, portion control, exercise, etc. We try to have very nutritious choices for eating, and once in a while we have a junky treat. We try to be good about this. But because of the medication, Ben gets angry when we encourage him to make a healthy eating choice. His brain just wants more more more. So he has gained weight. Which makes him very insecure and self-conscious. My heart breaks for him. I've been in his shoes.

After the psychiatrist asked if this was the best we could do in terms of keeping Ben healthy, he said "Then we have a problem."


At that moment, Ben caught on to what we were talking about. I explained calmly that Ben's body wasn't liking the medication, and we may need to get off of it. Ben immediately burst into tears, weeping "But this is my MIRACLE drug!! I CAN'T go off of it!" 

Ouch. Mama heartbreak.

I told Ben that a lot of external things have changed in his life since starting this drug, and he may not even need it anymore. I reminded him how he is getting a total nutritional overhaul with our dietitian. She is creeping into the nooks and crannies of his body with her special energetic, scientific, "voodoo" testing, and finding all the things that Ben needs to be healthy. He is much healthier than he used to be because of that. Through the dietitian's muscle testing techniques, we know what supplements Ben needs, what his body needs to detox from, if he has a virus or's incredible. So that's the first thing.

The second thing is that Ben is getting so much more support at school. He has much more one on one support, he has extra help in so many ways. This has led to a decrease in overall frustration. An increase in self-esteem. More cooperation when doing homework. Less homework because he has more help at school. Less aggression. Less anger. More compassion. More patience. More love. The past two months have been completely wonderful and unexpected with Ben. He has been his true self. That boy that we used to only catch glimpses of; that boy that was funny, kind, generous, filled with total heartfelt calm and love. That boy that I know he always has been, but who has been buried under loads of anger, fear, anxiety, rigidity, and defensiveness. My boy has climbed out of that Mountain of Ick to turn his beautiful face to the sunshine and embrace life. These past two months have been mind-blowing.

All the way home from the psychiatrist's office, Ben cried. He felt he just could not come off of this medication. He knew he would rage again, he knew he would be angry again, he knew he would lash out at the people he loved the most in the world and he wouldn't be in control of it. He didn't want to be that way again. He loves to be his true self.

I told Ben to just breathe. Just wait. We'll take it one step at a time, together, and we'll figure out what to do. Parents shouldn't have to look their child in their teary eyes and decide whether to keep him on a medication that brings his true self to the surface, or take him off the medication because it's not healthy for his body to live on it. 

Mama heartbreak. 

Ben and I talked a LOT over the next days about what to do. Ben contemplated his choices. Ben has to be invested in our decisions now, otherwise nothing works. He deserves to be invested, and consulted, about his own body and mind and soul. He deserves that respect. (With Mama knowing that she has full veto power, of course.)

Ben came to the decision that his weight is bothering him so greatly that he doesn't want to be on this medication anymore. He decided his physical health was very important. He chose to face the possible rage returning. I told him Dad and I will be by your side, doing everything in our power to help you stay the true you. 

Over the past few weeks we've been slowly coming off of the medication. Slowly. No sudden movements. Ben is having a harder time keeping his impulsive outbursts in check. He struggles with an increase in anger, an increase in frustration, an increase in physically lashing out. But. But, he is also maintaining his true, endearing self most of the time. Most of the time, if he is showing anger, there is an underlying emotion that he doesn't know how to identify that is actually the problem. 

For instance, Daddy is gone on a trip. Yesterday, before Alex left, Ben was having a very angry time. Finally, I asked him what was the matter. He said "I'm mad." I said "No, underneath that. What's the matter underneath that?" He said he was so sad that Daddy had to go on his trip. 

That's often the case- anger just shields true emotions from coming to the surface. For so many years, when Ben felt any emotion, he showed Rage. He wasn't able to understand, interpret, or show sadness, disappointment, depression, etc, without simply showing anger. It has been fascinating to watch Ben mature. Right now he is starting to identify and embrace all the other feelings that he has. It takes me identifying those emotions for him first, but he is at the point now where he can halt his Rage and understand that he actually isn't angry-- he's sad! Or frustrated! Or disappointed! Or lonely! Or bored! Or tired! Or whatever!

It's coming along. Slowly, slowly, but it's coming. We're getting there, making progress. I don't care how snail-slow the progress is as long as we're heading in the right direction. So the decrease of this medication continues. Today was a tough day. Not only is Dad gone, but we decreased the medication just a teensy bit more. Every decrease does cause an increase in angry outbursts. Which is tough. As Ben was lying on the floor, pounding his fists and crying today, I told him I had decreased his med a little more today. I said he needed to tell me if he felt this was ok or if it was too hard. Because we can stay at this level of med if it's too hard. He was very upset because he wants to get off the medication so he can lose weight. And he hates it when he loses himself to the anger. I don't usually tell him when we're decreasing the med, so that he's not thinking about it and worrying about it. I just do it, and give him that information as necessary.    

I have found through this decreasing process that it is easier to reach Ben when he is angry than it used to be. It used to be that Rage would take over and that was it. We lost the real Ben for however long it took to feed The Rage. When The Rage was satisfied, it would leave Ben's body, wracked with sobs of contrition, weeping with sorrow at what he had done or said while not in control. Now, if I'm extremely calm at all times, like exaggeratedly calm, I can usually wheedle Ben away from The Rage and back to the true him. Before he is too far gone with Rage, I can get him to see that he is actually feeling sad. And it's ok to feel sad, because something sad just happened. And I'm here beside him, to give him a hug and be with him. And it's ok, he doesn't need to be mean or angry just because he's sad, he can just be sad. 

And many times it works! Many times I'm able to snatch my boy back to me before Rage gets control! This used to be impossible. Just impossible. Once Rage would come, it would stay. It would wreak havoc on everything and everyone around Ben. Including Ben. It was devastating. But now I see glimmers of hope. I can see a small light, shining in Ben's soul--I can see he wants out of The Rage for good. And I know he's strong enough to fight it. I know who he truly is, and I know he can make it. 

So we'll stand beside him and walk through the dark places with him. Because he made the choice to go off of this medication so his body can be healthier, and we know he can do it. Whether he will need a replacement med remains to be seen. The trouble is, we've tried pretty much every med there is to control rage. And none of them worked. This medication was our last resort. So...sort of out of options. I feel like we're balancing on a skinny tightrope made of a single thread. I'm just willing us to get to the other side, safely, away from Rage. I think he can, I think he can...  

One Small Blip

Last year, a 13 year old boy in our neighborhood felt he couldn't face living anymore. His death shook our community to the core. I remember the day it happened. I remember hugging my children extra tight that day, and every day since then. I remember talking with my older boys about suicide and about how it's absolutely not ok with me if they ever decide that life is too much. I don't know how parents can go on living with such raw despair in their hearts. My heart goes out to our neighbors who lost their son a year ago. 

I remember a couple nights after the boy's death, his family held a memorial in the small park in our neighborhood. Our house is on a corner. Our street is the only way into and out of our neighborhood. Ben, Jonah, and Alex walked over to the memorial. Ella and Aidan were in bed. I stood on our front porch with my sweater wrapped around me, freezing, but too full of sorrow to move. It was cold and dark when the gathering began. A beautiful snow started wafting down from the heavens. Tears began to prick at my eyes for the pain this family was going through. My tears came faster as I watched the headlights of car after car after car after car pour into our neighborhood, lighting up the falling snow, to honor the memory of this boy. The snow fell softly as every space of curb in our neighborhood was taken up by parked cars. I was awed by the number of people who came to remember this boy and grieve with his family. It seemed unbelievable to me that so many, so many, families came to stand in solidarity with our neighbors.

I kept thinking why can't we show such support to each other when we're alive and well? Why does it take a death to bring a whole community together? Why does it take a tragedy to bring dozens and dozens of cars, streaming in to a neighborhood on a snowy night, to show their support? Why are there meanies and bullies and teasing and torment and struggles? Why can't all kids be kind to each other and support one another? Why can't all grown ups model that behavior? It broke my heart to see this out-pouring of love and support brought together by death. Had this boy known about all the people that had his back? All the neighbors and friends, some of whom I'm sure he didn't even know, who were always there for him in spirit?

Last week, Ben got an award at school for Citizen of the Month. It's a secret- parents of the winners sneak into the back of the cafeteria to watch their children accept their "swag bag" and the principal reads a statement about why the child got the award. 

Despite the fact that Ben came home from school deflated because some of his peers had said he didn't deserve the award, and he conceded that probably only Jonah voted for him and he didn't really deserve the award, I was completely, insanely, over-the-moon proud and happy for Ben and his accomplishments. Ben's face did light up when he said there is always one boy who tells Ben all the time that he thinks Ben is great. That he can tell Ben has had a hard day, but to hang in there. This one boy makes a big impact on Ben. Wouldn't you just love to be this boy's Mama? Wouldn't you just burst at the seams with love and pride for your boy and how kind and wonderful he is out in the world when you're not watching? Wouldn't we all love to have kids like this boy? This Mama should be so proud. Ben has friends, and they always cheer him up, but this particular boy is something special. This boy consistently shows up for Ben, cheering him on during his hard days.

At the little lunch ceremony for the students who were being honored, I was busting with pride. I walked in and sat down in the cafeteria. Ben stood up at his table and waved at me. Then Jonah popped up across from Ben and waved like a maniac- just the way I've taught them. :) I felt my heart swell a million sizes.

I sat in the back of the cafeteria, watching and listening as the principal talked with the whole 8th grade class about the month's behavior reports, what improvements they have made, etc. Some of the faces sitting at those lunch tables I have known for 9 years. Some I don't know at all. They were all so perfectly beautiful- their lanky limbs, braces, and pimples. So perfect. All of this crazy 8th grade stuff is just a moment in the grand scheme of their lives. One small blip on The Radar Screen of Life. 

  The other night as I was tucking Jonah in and rubbing his back, he mumbled "I'm so dumb." I was taken aback-- you never know when your kids will unload their hearts to you, and you never really know what's weighing on their minds. I asked him why he feels that way. He said that even though he's trying his best in school, he's still not getting good grades. He thinks it's because he's dumb.

Whoa. No one calls my smarties "dumb." Not even themselves. I explained to Jonah that he is actually quite brilliant. He's had neuropsychological testing done and the test results confirm that Jonah is very smart. His intellect is not in question; rather, the school being unable to recognize and provide support for Jonah's (sometimes) invisible disabilities is the problem.

Jonah said he is worried about getting through high school, and he's worried he'll never get a job because he doesn't have good grades. I told my little worrier that no job looks at your junior high transcripts to decide whether you are a good candidate. And as far as high school, we'll just take it one step at a time. All Jonah has to do is keep trying his best.

I told Jonah that this week is his IEP meeting, to hear whether the school feels Jonah meets the criteria to receive special education. When I walk out of there WITH Jonah's new, shiny IEP all set up, I guaranteed Jonah that a whole new world will open up. I said just look at Ben! 2 years ago, Ben was a complete mess, academically, emotionally, everything. He got an IEP last year, and his needs at school are being met very well. This year, Ben is thriving. He's doing wonderfully! He's got better grades, his frustration level is down, his aggression is down, he's happier. I told Jonah, just wait. This will happen for you too.

This is a perfect side-by-side test of what happens to kids when you give them the support they need at school, versus what happens if you don't. Sadly, my twins are the guinea pigs. One boy is thriving and one is tanking. It's not easy to be the parent of these little guinea pigs, and to have to sit by while one little guinea pig's self esteem is destroyed. I don't know if it will ever recover. I do know that WHEN Jonah gets the support at school that he has desperately needed for years, he, too, will begin to thrive. This is but a blip on The Radar Screen of Life. This is just preparing Jonah for all the other adventures he will get to experience in his life.

In that cafeteria, waiting for Ben to get his award, I felt my heart energy grow and grow until it filled the whole room and burst like a firework over all those sweet, awkward teenagers. I hope each one of them knows that they are cherished and loved, and that there is nothing more important than them in this world. I hope they know how many people would show up for them on a snowy December night, how many who think they're amazing, how many who adore them...if we showed up for people who were still in this world. If we told people in our lives every day what a gift they are. If we were kind and accepting of everyone.

I won't let my children's blips on The Radar Screen of Life go un-noticed or un-cherished or un-cheered-for. All those little blips add up to a beautiful life. I am honored to be present for my kids' beautiful lives. Be sure to tell your loved ones they are cherished. Be sure to show up for them every day, so you don't end up wishing you'd said, done, been more to them if a heart-wrenching, snowy December night comes your way. Regardless of who people are, what they do, what they stand for, everyone deserves to know, while they are living, how beautiful and perfect and cherished they are. And what a gift to the world we all are.

Thursday, January 7, 2016

Itchy Sphere Oil

I mean no offense to anyone by anything written in this post. Just wanted to get that out there first. Here we go...

A few weeks ago, Ben and I were driving somewhere. He was very upset because he couldn't get a phrase out of his head and it was bothering him like crazy. He had to keep repeating the phrase. He had to keep thinking the phrase. This is part of his OCD.

The phrase was "subdermal hematoma."

Weird, I know. Gotta love OCD.

Ben was so distressed by having to keep thinking about and saying this phrase, I scrambled to find a way to help him. I decided to make up a song. I've always made up songs about everything since my babies were first born. In fact, when Ben was taking piano lessons a couple years ago, the instructor asked me if I sang to Ben as a baby. I said yep, and I still do! She said she could tell because he just understands music, he 'gets' it.

But I digress. So I quickly thought of how to make "subdermal hematoma" into a song- that doesn't rhyme with much. I had to act fast or Ben would end up in meltdown mode. Here's what I came up with:

Ben: Subdermal hematoma
Me: Oh how I love ya
Ben: Subdermal hematoma
Me: You remind me of my mama
Ben Subdermal hematoma
Me: She is in a coma
Ben: Subdermal hematoma
Me: I want to buy her a boa...
Together: C O N S T R I C T O R

Admit it, you love it, right?? Ben though it was so insanely hilarious, he got knocked right out of his meltdown, stressed out, OCD mood. He laughed and laughed, and we sang that song all the way home. Ha. Mama wins. Take that, stupid OCD.

*                                              *                                               *

One night I was making school lunches for the kids for the next day. I was suddenly struck by the intense feeling that my twins needed a Mama Rap in their lunch box. I know, insane. I am about the most un-rappiest person in the world. But I got the sense that the boys needed me to rap. This just came to me:

Yo yo
Yo Mama loves you so
You make the world glow
Just by bein'
in it.....

Peace out. Mama out.

When the boys got their lunchtime rap the next day, they came home from school beaming. It was the cutest thing. They had all their friends read the Mama Rap. Their friends thought it was cool (I know, I'm awesome- 8th graders think I'm cool once in awhile.), and the boys couldn't stop laughing. Anything to brighten up their day.

*                                                 *                                           *

WARNING: This next part contains talk about private parts. Sorry, but that's what Mamas have to do sometimes. Especially if you have teenaged boys.

So one of my 13-year-old darlings is having some testicular itching. I know, gross. He keeps having to itch, with gusto, in public, to the extreme embarrassment of his mother. The doctor says it's nothing. Hm, well it is something. Because the kid is being disgusting, scratching himself with great dramatics, everywhere we go. This cannot continue.

I decided to look up ways to alleviate this problem online, with natural products. I read through many descriptions of various itchy symptoms, and ways to treat this. I came upon an article that said tea tree oil can help alleviate this particular brand of itch. I got very excited. I told my boy I would fix his itchy problem! The family looked at me with disdain- "Mama's on a kick again, something crazy for us to try..." I would show them!

So you have to know something about me. I hate the word "testicles." It's just so icky. I also hate anything gross related to that area. Like when Alex was doing karate, he left his protective cup out on the TABLE after his class! EW! Disgusting! People EAT there! Ella was going to touch it, and everything in the room slowed down, like in the movies. I lunged at her to stop her from touching The Grossness, and yelled-


The boys still hoot about that. Daddy's nasty penis cup. Well really, why would he put it on the table? Gross.

Anyway, one thing you also need to know is that I've been working on starting up an Etsy shop to sell weighted blankets. I finally decided on the name "Nonah & Bean." When Ben and Jonah were toddlers, Ben used to call Jonah "Nonah," and Jonah called Ben "Bean." So adorable. So the kids know I've been trying to work on this shop, and find the name, etc. My darling with The Itch went into the bathroom with my concoction of tea tree oil mixed with coconut oil, and applied the ointment to The Itch. He came out with a happy, relieved look on his face. He said he didn't itch anymore!

The boys were so excited about my super duper natural fix for Itch, they decided it deserved to bear an official name. They said it should be called "Nonah & Bean's Itchy Testicle Oil." Hm, somehow I don't think that will sell well on Etsy. So all week, Nonah & Bean's Itchy Testicle Oil has been in high demand. "Mom! I need some Itchy Testicle Oil!" at least three times a day. I hate that word.

Finally, I said "Boys. We cannot use that word anymore."

They said fine! How about "Itchy Ball Oil?"

Nope. Not gonna work for me.

They proceeded to name all sorts of 'creative' ways we could describe this particular boy area. I vetoed every one. I told the boys that the name of the oil from now on would be "Itchy Sphere Oil." So there.

The hilarious part is that they really are calling it that. Cracks me up. Look for "Nonah & Bean's Itchy Sphere Oil" coming to an Etsy near you!

My darling with The Itch came home from school the other day, and said that he had gone to the bathroom at school. Another boy in the bathroom exclaimed "What is that AMAZING smell??" My darling smiled secretly to himself. I'm grateful he did not proclaim aloud that that amazing smell was his Itchy Testicle Oil.

The crazy things parenting brings. You have to remember these funny things and laugh when you can. Kids do make life more interesting.

Friday, December 4, 2015


A very wise friend of mine told me a quote this week: "A person's greatest strength is their vulnerability." I thought I'll have to mull that one over for a bit to really figure it out. But I also thought, well, I've got vulnerability covered because I put my stories out into the world without filter, letting people see into my life in a very vulnerable way. Ha. Got that covered.

Then my week hit me hard.

Ella and Aidan have been struggling with school anxiety big time. Aidan's teacher hadn't been following his 504 Plan up until two weeks ago when we found out about this. I would email every couple of days about problems, and the teacher would say Aidan needed to learn that skill independently. I was very frustrated. Aidan was very frustrated. I couldn't understand what the problem was, given the fact that he is supposed to get accomodations at school. Why was I hitting a brick wall? Now I get it- the 504 wasn't being followed. Like, at all. we have it back in gear. The teacher is making accomodations. Like he was supposed to three months ago. Now Aidan gets help filling out his assignment notebook. Now he gets help putting homework into his backpack. Now he has his assignments modified. 

Now it's a little too late. The damage has been done. I think it can be reversed, but it's a struggle. Aidan feels completely overwhelmed by all things school. He doesn't trust that he will be able to manage school. He doesn't trust that he will get the help he needs. He doesn't trust that he will succeed, because he doesn't trust he will get support.


So now we're dealing with more school anxiety than ever before with Aidan. Just off and on, not every day, so that's good. But when Anxiety hits, it bowls me over. It crushes me, from body to soul.

Last week, Aidan had an Anxiety Day. He woke up ok. I thought the day would go normally. Then he started in with "I am NOT going to school." He started freaking out. He started screaming, and didn't stop for 45 minutes. He locked himself in the bathroom, crying and screaming that he wasn't going to school. I decided that day to see what would happen if I really pushed him as hard as I could. Partly because people think it's my fault when my kids don't get to school. Partly because I'm tired of being judged- by people at school meetings, by people in the world- because I can't force my kids to do things. So I decided to push hard that day.

When it was time for the bus, I picked all 65 pounds of Aidan up and carried him out the door, kicking, crying, screaming loud enough to wake up the entire county. He refused to put on his coat. He fought when I put it on him and ripped it off. I  carried him to the front porch in his pants and t-shirt. No shoes, no warm clothes. I was pushing him hard. I held him, flailing and fighting for ten minutes, waiting for the bus in the cold. I wasn't dressed for the winter morning, either. My body ached and throbbed, because it always hurts, but having a 65 lb screaming, flailing, fighting blob in your arms makes a body hurt almost more than it can bear. 

The neighbors showed up at the bus stop, which is our driveway. They politely looked the other way as I fought to hang on to Aidan. The bus arrived. I carried my out-of-control blob to the bus. I put him on the bus steps. He fought, he screamed, he wailed, he wept. I physically could not get him any farther into the bus. I tried for a minute. I tried as hard as my hurting body could. Finally, I threw Aidan's backpack down on the ground as hard as I could, said a bad swear word, and gave up. Aidan bolted into the house. I ran in after him, sobbing myself. In front of all my neighbors.

Not a stellar Mommy Moment.

Now we come to Miss Ella. She has had anxiety about school and leaving me forever. For. Ev. Er. But it never gets better, no matter what we do. Now her sensory processing issues are kicking up. Over the past month she has had increasing problems handling all of her senses and the input the world gives them. Food is challenging. Noises set her off. But the very worst thing is tactile- her skin is not playing nice. Clothes are driving her literally insane. I will not let her out into the winter without some sort of leg covering. I know, I'm a horrible, mean Mama. So we have tried every single type of pant I can find. Nothing is comfortable. They have to be tight at the top, long enough, high enough on her waist, and soft and stretchy. Yeah, right. She's the width of a string bean, and tallish. So right there is the first problem. To get pants that fit her length, they end up being big around her teeny tummy. Not acceptable. All my attempted "pants-fix-its" are unacceptable to her also. 

The other problem is Ella's current tic. She has the one back that she had over the summer, where she has to do a tummy clench-and-roll kind of thing. This tic makes her pants fall down from where she likes them to be, and that makes her crazy.

Yesterday, Ella was in tears about going to school. Everything set her off, mostly her stupid pants. I think she tried on every single pair she owns. Nothing worked. After trying his hand at helping Ella, Alex exclaimed "She wants PANTS that go up to her ARMPITS! There IS no such thing!!!" Finally I said that's enough. You're just going to have to wear what you have on. The end. 

She wasn't happy with me. I have had to put her on the bus "the hard way" many many times this year. Yesterday included. She wouldn't get on, so I had to throw the mail that I was holding on the ground to lift her past a friend and into her seat. While she sobbed the whole time. I climbed down the bus stairs to my posse of neighor Mamas. Boy, have they seen an eyeful from us this year. I wanted to jet into the house because I was so embarrassed and sad and overwhelmed. But my sweet neighbor Mamas gathered around me. They hugged me. They said they wouldn't be able to handle what I handle. They said I'm a saint. They said I'm doing such a good job. They said to never worry about what they are thinking about us. They said not to be embarrassed.

And I just cried. And cried. And cried some more. 

Because not only had Ella been a handful that morning, but of course the older boys had their own overwhelming issues. And I didn't feel well at all. And I don't know how much more of life I can take.

I got the older boys on their bus. I took a shower. I went to the chiropractor. Who is so sweet and nurturing that I started to cry again. She said such kind, loving words to me too. She said my kids chose me to be their Mama, and even when I feel like I'm doing a terrible job, they see my love for them. They see how I get up EVERY morning, even though I don't want to, and I'm there for them. She said I was chosen for this. She said I can handle this. I mouthed- because I was crying too hard- that I don't think I can handle it. She said YES I can. I do! I get up and I do it every day.

So by that point my whole face was so swollen I looked like I had been punched. Which is what I felt like also. So that was nice.

I was supposed to meet a friend for brunch. I texted ahead and warned her I'd been crying all morning and I looked like an alien because of my puffy eyes, and not to be alarmed. She must have thought I was a complete loon, but she didn't run in horror when she saw me. She didn't even run when I cried more while we ate and talked. She cheered me on, and she cheered me up. 

AND, she's completely brilliant. She suggested getting Ella OVERALLS to try to combat her problem with the waists of pants!! Duh! Why didn't I think of that? Of course no store in the area sells overalls for 6 year old girls, so I had to order some online. Knowing my luck, there will be something else "wrong" with overalls, in Ella's opinion. But it's worth a try. I talked with her yesterday about it and tried to really make it sound exciting! 

We'll see. I'm not holding my breath. That kid's nervous system can make anything into a sensory problem.

As I spent the day going from appointment to appointment, composing myself in between and then totally falling apart when faced with the wonderful people in my life, I thought a lot. I wondered why I have days like this now where I just cry. All the live long day. What the heck is my problem? I decided it's because the people in my life are too darn nice. It's their faulth.

I thought about how a few years ago, I didn't have this support system of friends who really "get" what my life is like, or even medical people who really understand. I was just little old me, trying to take on the world and get my kids through it as best I could. Now I have an amazing support system set up, so that everywhere I go, everything I do, I'm surrounded by kind, loving, compassionate, understanding, supportive people. Even the people in my life who live far away- when they get in touch, it's always to support and love me. When I get my nails done, or see a friend at the grocery store, or take the kids to therapy, I'm in contact with people who support me. And because I feel their love and generous kindness, it makes me feel weak. It makes me feel vulnerable. It makes me cry on my tough days. It makes me unable to hide my sorrow and overwhelm.

I thought I was Queen of Vulnerability, writing about my children and our lives, letting people in to see they are not alone in their daily Crazy. But I realized yesterday that because I have a strong, beautiful, caring support system, my soul knows it can be even more vulnerable. My soul is taking me to the next level. I simply cannot fake that I'm ok anymore. Sometimes I really try hard to make sure people get the impression that I'm fine, kids are fine, we're all fine. Usually, though, on really tough days, I can't hold it in because the sorrow and weight is just too much to bear on my own. So I go about my business of the day- meeting friends, grocery shopping, having medical appointments- and just cry as I go. I have learned to keep tissues stashed everywhere.

I really, truly hate this about myself. I hate that there are times when I can't fake it. When I can't just put a smile on and do life. I hate that sometimes it's really so hard that I just can't manage to go on gracefully. I hate that there are times when my sadness betrays me and I have to let people in. I learned from a young age to deal with my emotions on my own, and not rely on other people for help too much, and I hate it when other people see what I'm really struggling with. I hate it when my soul decides to let my emotions out of my body for the entire universe to see. Darn soul.

As I processed all of this yesterday, I came to terms with the fact that although I consider myself to be an open book, I'm not as vulnerable as I could be. I don't like letting people in. When I have days like yesterday that are so hard that I can't maintain composure, I think it's because I'm practicing being vulnerable. My Soul Lesson for the moment is to learn to be comfortable with being vulnerable. 

I decided to try to become ok with that uncomfortable, foreign feeling of being vulnerable. I don't know if it really is a great strength to go around crying all day long every time you run into a compassionate face, but I know that I am supposed to learn the lesson of vulnerability. It's hard and seriously uncomfortable. It's not a place I like to visit. I have a hard time asking for help, and letting other people then help me. It makes me want to crawl out of my skin when I'm so open and vulnerable that anyone looking at my puffy eyes can tell I'm struggling. But there are just some days when I can't keep it in anymore, no matter what I do. It makes me feel ridiculous. But it is what it is.

Every day I hope I'm growing as a person, as a soul visiting this Earth. I realize I am a work in progress. I'm not a saint. I'm not perfect. Some days all I can do is weep because of the overwhelming-ness of everything that is on my shoulders. I do believe my children and I chose each other. I do believe I will get through this and carry on- bad days or good. But maybe this whole crying thing is happening so that I learn to ask for help, and more importantly, accept help from my circle of beautiful friends. It sucks to be vulnerable. But I'm working on it.

Being vulnerable is your greatest strength. I'm working on it.

Monday, November 30, 2015

Hope and Courage

The reason I felt compelled to start a blog was for two reasons: I wanted to put out in the world who I authentically was, my real self. And I wanted families to know they are not alone in their struggles.

Every Christmas season, I would send our Christmas cards to friends and family far and wide. My glowing children would be beaming on the front of a picture-perfect card, sending merry wishes and holiday hopes. This one snap shot of our life was not accurate, and I felt like I was perpetrating a cover up about what our insane life is really like on a daily basis. Yes, once in a while, our life is picture-perfect. For one millisecond here or there. For instance, last night Ben and Jonah were doing their funniest Michael Jackson impressions, with a "Ben and Jonah twist." It was hilarious. I couldn't stop cracking up. They were doing this as Ella was carefully putting her last ornament on the tree. Ella, who begged to dye the tips of her hair pink yesterday (To be like an American Girl doll she adores. Of course I couldn't refuse because how cute is that?) and looked so beautiful, thoughtfully hanging her last ornament. But most of the time it is fly-by-the-seat-of-our-pants-total-chaos. I love holiday cards for the same reason I love Facebook: You can see a snapshot of what life might be like if you lived in a movie. These aren't real life moments, these are "What We Could Be Like If Everyone Cooperated And Took A Shower And Smiled At Exactly The Same Time And Didn't Try To Kill Each Other For A Split Second" pictures of our lives.

When I was young, we lived in Africa. In pretty much the bush of Africa. I grew up with extreme poverty all around me. While I had all of my needs met, African children all around me did not always have their basic needs provided for. I have always felt a sort of world consciousness. I remember being very young and crying myself to sleep many nights because I felt the weight of the world's grief and need on my shoulders. I could feel the sorrow, the unfairness, the need of those less fortunate. I still feel that weight. As idealistic and naive as it sounds, I wish I could help the entire world fix all our problems. Hunger, poverty, violence, war, loss, illness...I wish I could fix it all. I often feel powerless and insignificant in such a big, needy world. What can I do alone? Silly naive me, I can't fix the world's hurts.

But what if I could? Just one person at a time, just little by little. I won't be able to fix all the world's wounds, but I can always strive to help in any way I can. I was reminded of this over the weekend.

We have several family members who are very ill. One of these family members reached out to me, and I was so honored and humbled to be someone that she wanted to support her. There isn't much I can do to actually help her, except just keep letting her know I understand a smidgen of what she is going through. And that I am always here for her. And how I love her. And remind her how many many people all around the world are sending their healing energy and love to her family.

I started thinking about all the people who have reached out to me from far and wide since I started my blog. It's pretty incredible! I am constantly amazed, humbled, and honored to be able to share our story with people just so that they know they are not alone in their struggles. Just so they know that you can hang on to hope even in the darkest times. Old friends, new friends, people I haven't seen or spoken to in 30 years, people I saw yesterday--they all have a yearning to connect and to know they are not alone in this Crazy we call life. If I can make even just one person feel a small bit more understood or comfortable, I'm changing the world. I am always taken aback when someone says they read my blog, or were touched by what I wrote, or the same thing happened to them. I am honored and humbled. And I just feel love. I know, naive and idealistic. But that's just me. It's the way I've always been and will be until I'm a hundred and two. (I may become bitter and grumpy when I reach 103. Just warning you all.) 

When you reach out to me, it takes courage. And it helps me remember I am not alone either. My soul feels the worries of those around me who struggle, and those far away in third world countries who struggle. But my heart feels enormous bursts of love and gratitude for everyone who touches my life. I am thankful and blessed by every single person who crosses my path each day.

A friend remarked the other day "You just love everyone, don't you?" I stopped for a second to consider, because I never thought about that before. But then I said yes! Yes I do! Ok, some people irritate the crap out of me, I admit it. Putzy drivers, mean people, people who don't understand my kids, ventriloquists...but most everyone else I do love. The world needs more love.

Alex bought me a sweater this weekend that says "Let your love shine." That is totally my motto. When I saw that sweater, I knew I'd just have to wear it every day for the rest of my life. When I'm 104, you can bury me in it. It'll be threadbare, but that's ok. 

In my old age, I've realized it's ok to be who I am. It's ok to be idealistic and naive. Because isn't the world better served by love than by cynicism? I never told anyone that I used to cry because I can physically feel the sadness of the world. I haven't told anyone that sometimes I cry because I can feel the fear and stress of family members and friends who are sick, or struggling with special needs, or scared, or suffering. I know my tears don't do anything to help anyone. But with my tears come silent prayers for healing, wholeness, love, peace. Peace for the mamas I know who are struggling in so many ways. Peace for little ones who are sick or have disabilities. My tears and prayers are a deep yearning for healing in the world. 

Sometimes all I can do is be here for someone. To let them know I understand, and they are not alone. Sometimes all I can do is hold them in my heart and love them. Tragedy happens to us all, it happens every day all around the world. But you can't be defined by tragedy. You must be defined by the hope and courage that carry you through the tragedy. Sometimes hope and courage come easy. Other times you have to claw and cling to any shred of hope and courage you can find, and fight with all your might to hang on. But at least you're still hanging on. It may not be pretty and Christmas-card-worthy, but you're hanging on to hope and courage however you can, and that's what is important.

Here's to being naive and idealistic and loving everyone and healing the world one small act of kindness at a time. It's just the way I roll. 

At least until I'm 102.

Wednesday, November 11, 2015

"Ella & Arnold"

I love kids. They are so perfectly, endearingly fresh and funny and adorable. I just want to squeeze them and make them feel how much I adore them.

Last week was my sweet hubby's birthday. He had to work all night the night before his birthday, got three hours of sleep, then worked all day from home. What a way to start a new year. I had an insane day. Yes, part of it was awesome- I got my hair done, which is a major production these days since my darlings are giving me more and more grays. AND since my hair has finally stopped falling out (For the past three months it fell out in clumps because of my tick and mold illnesses. My doctor assured me it was just a phase and it would end and I would not go bald. I seriously doubted him for a while.), now I have all these funky fuzzies that my hair artist (she is truly gifted) had to figure out how to deal with. We decided on bangs to hide the funky fuzzies. So anyway, that was a great appointment, but takes quite a bit of my day.

Then I had to pick up Ella and Ben a little early from school and take them to get their orthotics fitted. When we got there, the doctor asked if the kids had gotten their new shoes. Um, no...he said the orthotics wouldn't fit in their current shoes because they were almost too small as it is. SO, we dashed just around the corner to Target and hustled little, and not-so-little, feet into shoes as quickly as we could so we could go back to the doctor and still get the orthotics fitted. It was pretty comical. I've never seen Ella and Ben run so fast. They got new shoes- completely unexpected and totally exciting- and new orthotics. They knew they had to hustle!

We got home just in time for me to switch out kids and take Jonah to OT. Ella had a meltdown. In true Ella fashion, she cried and freaked out because she couldn't decide if she wanted to stay home with Daddy and go to swimming lessons, or come with Mama and be bored at Jonah's appointment. Finally I convinced her to stay home. 

After Jonah's appointment, we came home to find only Ella, and not Aidan, ready for swimming lessons, and still in the driveway, when they should have already been at the fitness center. Argh! Alex was exhausted, but willing to cart Ella to her lesson. 

Ben has a Thing about birthdays. Especially family ones. He MUST go to a store and pick out a card for the Birthday Person, a small present, wrapping materials, and possibly their favorite candy. Every time there's a family birthday, I forget Ben's Birthday Thing. And always, always, the day of the birthday, Ben freaks out because he hasn't gotten his Thing for the birthday person. And always, we're running to Walgreens at a very inconvenient time to satisfy Ben and his generous need to get a Birthday Thing. He is so thoughtful and kind. I love that he HAS to get something for the birthday person. So after Ella and Dad left for swimming, I took Ben to Walgreens to get his special things for Dad. He goes through all the aisles, looking for the perfect card, the perfect gift, the perfect wrapping paper. And the perfect 3 Musketeers Bar- because that's Dad's favorite. Ben has a little OCD, in case you weren't aware (I say 'little' sarcastically), so this process takes quite a bit of time. Each candy bar must be carefully inspected to make sure it is up to Ben's standards of quality. Most are not. 

Eventually, we made it home. I felt sorry for Alex, having had to work so much the day and night before his birthday, and then also on his birthday. I firmly believe in Birthday Magic. No matter how old you are, birthdays should have at least some brief moments of magic. So Ben and I scurried around to make the house- that was FAR from magical- clean, make frosting, frost and candle the cake, wrap presents, and sign cards in the 15 minutes before Dad and Ella got home from swimming lessons. During this frantic race for Birthday Magic, I called to Aidan who was upstairs on the computer. Playing Minecraft. As usual. I told him Daddy would be home in 10 minutes and he needed to come downstairs and help us get ready! His fingers flew off the computer and he got downstairs faster than he's ever stopped a game. He asked if Daddy was home. Nope, 10 minutes. He exclaimed "OK! I'm going to HIDE!"

I don't know what my childrens' fascination with hiding is. They've always loved hiding gifts, goodies, treats, people...I think they love discovering unexpected goodness. The morning after Halloween, Ella strangely went downstairs all by herself. I thought for sure she'd be down there stuffing her face with candy, so I went down shortly after I heard her shuffling around. I found a trail of lollipops all the way from the front door half way around the whole first floor. Ella looked at me sheepishly as I caught her with her hand inside the cereal box. She grinned and explained that she was hiding treasures all around so that when people found them they would be surprised and happy! She put one in the fridge. I found a treasure on top of the toilet. I found another one in that box of cereal two days later- when I had forgotten Ella had done this and when the next kiddo wanted Cheerios. It did make me surprised and happy! I remembered the joy with which Ella hid all her tiny treasures to make us all happy. I keep finding them in odd places, even weeks later. Love that kid.

So Aidan was hiding for Daddy. After about 3 minutes, I hear a muffled "Is he here yet?" Nope. 7 more minutes. Aidan decided he couldn't stay hidden for that length of time, so he popped back out. He proceeded to spend the next 9 minutes- because Daddy was late- rushing around from room to room, watching to see if the passing cars were Daddy's car. He would yell "I SEE ONE! I SEE ONE! IT MIGHT BE DAD.....nope. it's not dad....I SEE ONE! I SEE ONE!!" Cracked me up. 

Finally it was Dad's car, and Aidan flew to hide in another room. As Daddy and Ella came in the house, Aidan blew open the door to the room he had been hiding in and yelled "Happy Birthday, Daddy!!!" Now that was Birthday Magic.

We sang and lit candles. We had cake and presents and cards. When I say "we" had presents, I mean Ella opened them all as Alex supervised. It was a fun way to end our crazy day. Birthday Magic was achieved.

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The other night I was driving the Mama Taxi around with Aidan and Ella after therapies. They were happily chatting in the backseat. I was thinking about a million Mama Things. Slowly, my attention was drawn to what my little ones were talking about. I realized Aidan had an old phone out. He had it turned so he was recording his sister and himself. He was doing his best Arnold Schwarzenegger impression. Ella was doing her best Ella impression. It was another episode of "The Ella and Arnold Show." Aidan loves to talk like Arnold. He repeats all these lines from movies, and then inserts his own comments in Arnold Speak. It's so hilarious to hear this skinny little boy talking like a big strong macho Austrian man.

Ella and Aidan have these moments where they 'find' each other again. When they were little and Aidan would go to preschool, he would come home in the afternoon and he and Ella would play together for hours. They have always gotten along so well. They crack each other up; they have the same sense of humor. Ella can play "boy" games with the best of them, and Aidan is intrigued with "girl" games. They make the cutest pair. 

As they have gotten older, Aidan and Ella spend less time together. They have their own friends, their own interests, their own activities. Which is a good thing, part of getting older. But once in a while, they 'find' each other again, and it's so fun for me to listen to them when that happens. They are like two little peas in a pod, laughing and hooting and carrying on like wild children. They get into their own little world where nothing else matters except the two of them. Love it.

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The other day before school, I said something and Jonah responded "Mom! That's assititis!" 

Um, what now??

He said "You know, assititis, like you said yesterday."

Ohhhh, asinine. He had been talking about something and I had replied that it was asinine!!

"Assititis" cracked me up all day, every time I thought about it. What cracked me up even more was then Alex, Ben and Jonah and I kept thinking of more hilarious words. Like if you fart and poop, it's a pooart. And a sneeze and a tinkle is a sninkle. The boys are usually in pretty cranky, irritable, angry moods in the mornings before school, due to the anxiety they feel about the impending day. But that morning was awesome. I had them rolling on the floor with my funny word combos before they hit the bus. It was great to see them laughing together and having fun.

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"Don't put a worm on the table!" are the words that came out of my mouth the other day when Ella found a pet worm in the backyard. It was another afternoon where Ella and Aidan had 'found' each other and were fully entranced with finding wildlife in the backyard. They both love rocks, and they often bring in handfuls from outside. They present their dirty, cold rocks to me with sticky open hands, their chests puffed with pride at the bounty of their treasures. So I'm accustomed to the kitchen being filled with dirt and rocks and pebbles, leaves, grass, etc, after my darlings have been excavating outside. But I draw the line at worms. And other backyard critters that belong underground. If you have a container for said worm, fine. You may keep it as a pet and feed it grass and hope it lives while you examine it with wonder before freeing it back into the garden. But please don't put it on my kitchen table! I assumed this rule was quite understood, but Ella sincerely was confused as to why I didn't want worms on the table! Apparently I have not been crystal clear about Worm Rules. We revisited the rules about backyard critters having to be contained before bringing them into the house. Filthy rocks, fine. Backyard critters- they need containers.

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My twins have always been cuddlebugs. The first time I saw them snuggling together, they were days old, in Ben's NICU incubator. The nurses said that they weren't doing well, so they put the little boys together so they could draw comfort from each other. The boys each had cords and tubes and bands and wires attached to them, so the nurses had to carefully organize all of that for two babies to snuggle. It was pretty funny, because after a while of snuggling and gaining strength from each other, Ben started hollering. His little body went straight and tense and he screamed. Jonah looked around as if to say "Really? I come over here to hug and snuggle you, and you're yelling at me?? See what I've had to put up with all my life?"

When we brought our micro-preemies home from the NICU, they slept together in one crib. As babies, the boys often spent time in one crib together. As little boys, I would find Ben and Jonah snuggled in one of their toddler beds together. Not only did they spend most waking moments in each other's presence, they also sought out their brother in moments when they needed comfort or amusement. Alex and I always have said it's too bad Ella and Aidan don't have a twin. Having a twin is a beautiful thing.

Periodically as the boys have gotten older, they still snuggle. I'll come downstairs in the morning and find both boys squished into the corner of the couch, snuggled up, watching TV together. They always have this look like it's completely natural to be squished up, side by side. Like this is the way life is supposed to be. And for them, it is. They have been together since the moment they came into existence. 

Now that the boys are teenagers, you might think they would be less willing to snuggle with each other. And while they do spend most of their days apart, there are times when they still need that physical twin bond. The other night, Alex was putting Jonah back to bed in the middle of the night. Jonah said "I need Ben. I just want a Ben Hug." They sometimes will snuggle in one of their beds before they get up for school. It's the sweetest thing to hear them say "Goodnight, Jonah. Love you." "Goodnight, Ben. Love you too." Yes, they can be each other's very worst enemies. But they also have this bond that will never be broken because they were given life at the very same time. Being a witness to their miracle of twin-ness is a beautiful thing. 

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Kids. Aren't they funny? So precious, fragile, their childhood so fleeting. I love these little things that make them so endearing.