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Tuesday, April 26, 2016

Ovarian Retirement

A couple years ago, I read the book "Bloom" by Kelle Hampton. It chronicles the birth of her daughter who has Down Syndrome, and the first year that taught Kelle how to live and love in the world of special needs. In her book, Kelle talks a lot about her circle of friends. Friends who drop everything to be there for you. Friends who show up when your house isn't clean and bring breakfast and make you coffee and don't care that you're in your pj's in the middle of the afternoon. Friends who circle their wagons and help you get through the toughest parts of your life.

I longed for friends like this.

I wondered how you collect friends like this.

I yearned for friends like this.

I have amazing friends, and I always have. But at the time I read this book, all my soul sisters lived too far away to show up in person when I was struggling. My counselor told me to just be who I am, and people will be attracted to my energetic vibration, and the right people will come into my life.

I'm all about energy and high vibrations. I know, many are skeptical, but frankly that's your problem, not mine. Skeptics are missing out on the magic of life. I love all things alternative and holistic and energetic and "voodoo," as my husband calls them. It's just who I am and who I've always supposed to be.

So a couple years ago, I just started to let my life light shine. I was who I was. I love who and what I love. I am who I am. I try to make the world a better place every single day, in big ways and teensy ways. I live in hope and gratitude. I believe in peace and beauty and kindness and generosity and honesty.

It's remarkable to see who was drawn into my life over the past few years. Friends who have enriched my life in so many countless ways, I'm in awe that I have been given the gift of knowing them. It's shocking to me how blessed I am.

The past three weeks, I've needed this group of friends. I've been dealing with a lot, and I don't know how I would have gotten to where I am now without my soul sisters from far and wide. Thank you for the hugs in parking lots, the hugs in grocery stores and nail salons and restaurants and the dance studio. Thank you for the virtual hugs from all across the world. Thank you.

I have a list of crazy health issues a mile long. I have gone to my general practitioner year after year, and her advice was to take better care of myself. Stretch. Drink water. Do yoga. Get a counselor. And definitely increase your anti-anxiety meds.

Those are all wonderful words of wisdom. If you're not me. And if you don't have serious health problems that the doctor is ignoring and letting you suffer with every minute of every day. For years and years and years. So I started my own journey of digging for my truth. I went to various doctors of various specialties. I was told I had arthritis. I was told I was fine. I was told I had Irritable Bowl Syndrome and anxiety and inflammation for some unknown reason. I was told a whole bunch of bologna. But I kept digging because I knew these poor "doctors" didn't know any better and were doing the best they could and were totally wrong. I kept digging.

In December of 2014, I found out I have Lyme disease and Chronic Inflammatory Response Syndrome, or mold toxicity. I also found out I have a ton more syndromes that explain all my symptoms. I was terrified and relieved. Finally, some real answers.

Since I look and act "normal," I've had to deal with disbelievers. Those people who don't think I'm sick because I don't act or look sick. I know it's hard to believe, but some people work really super crazy hard to function normally despite their medical problems. I think I deserve an Oscar, thank you very much. My kids need me, my husband needs me, my dogs need to be walked, the world keeps spinning and I decided to just get up and do every day the best I can. Some days are better than others, but I just keep putting one foot in front of the other and moving through life. I try to be grateful for the billions of awesome things in my life, and I try not to dwell on the health battle I'm fighting. Some days are easier than others.

I've been focusing, with every cell in my body, on getting better. It's so slow. Progress with these diseases is so slow, if there is any progress at all. Sometimes there are major setbacks. Many times I feel like what's the point? I'm not ever going to be who I was before I got so sick. But after I wallow a little, I get out of bed and start trekking again. I was given this life for a reason and I'm not going to waste it.

I went to my "doctor" a few months ago for a physical. It was sort of my last ditch effort to let my "doctor" prove herself and her "science" to me. She failed miserably. I told her what I have learned about my health over the past year, the diseases I'm facing. She said there seems to be something we're missing, did more blood work (which I told her would all come back negative because it's the blood work that all "doctors" have done on me and nothing shows up, but she did it anyway) and guess what it showed? Nothing. Apparently I'm fine.

I'm also done. Done with this doctor.

So. I'm going to disclose a little TMI here. Prepare yourselves. If you don't want to know, don't read it. I won't be offended. I won't even know, actually. As I said to a new friend last week, there really is no such thing as TMI for me. You can ask me anything, I will talk about anything, nothing is off limits as long as we're helping each other figure out life. So there's your warning.

Since Ella was born almost 7 years ago, my cycles have been bonkers. Actually, non-existent. My "doctor" said it was because I was using birth control pills and not to worry. Stretch more. Reduce stress. Get a counselor. Done, done, and done. Still was worried. I know that lack of cycles can be normal when you're on the pill, but I just had a feeling something was up. But I believed my "doctor" when she said I was fine.

Fast forward to 3 years ago. I told my "doctor" that I really thought I was going through menopause. I had lots of wacky symptoms. I still wasn't getting my period. She said...see if you can guess. DRINK MORE WATER! GET MORE SLEEP! REDUCE YOUR STRESS LEVEL!
does she not understand that the only way to reduce my extreme amount of stress is to not have my four children who have special needs???

She actually laughed at me, said a 36 year old can't go through menopause, and upped my anti-anxiety med.

awesome.

So here we are a couple months ago. I see a dietician who uses "alternative" ways of finding out what supplements my body needs based on muscle testing. We talked about how I'd been on the pill so long in my life time that maybe I should try to get off of it because it can really have yucky ramifications for your body long-term. So I January I stopped taking birth control.

I'm waiting....I'm waiting...still no period. Everyone tries to calm my nerves by saying that when you get off the pill it takes a few months for your body to reset itself, hormonally. Not to worry.

Three weeks ago I decided to start worrying. I went to my OB. She ran blood tests. She said it would be very unusual to be going through menopause at 39.

The OB called the next day. She said my hormones were all wonky (my word, not hers) and she wanted more blood tests. Also my prolactin level was high, which is abnormal.

I immediately consulted Dr. Google. I found out prolactin is made by your pituitary gland. This gland controls pretty much everything in your body, and if it's out of whack that's really not great. High prolactin can be caused by a pituitary tumor, usually benign. These tumors can usually be treated with medication to reduce their size and their negative effect on the body. So you know, not horrible-I'm-dying news, but not the best thing to find out either.

I got more blood work done at the OB. She got the results and wanted to talk to me in person. In the meantime, a soul sista had given me the name of her endocrinologist and I had an appointment with him.

As an aside, anyone ever noticed how super-crazy-brilliant doctors have very crappy social skills? And horrible fashion sense? Years ago when Alex had his appendix out, I told him my theory about doctors: if they show up with just terrible fashion sense, you can trust them with your life because that means they're insanely awesome doctors. Anyway, the doctors that the kids and I see who have really problematic social skills are always the ones who get the best results for us. I think you can't be both. You have to let your brain live up to it's full awesome-istic potential and let it win, or ignore that brilliance and become a socially acceptable human with passing social skills.

The endocrinologist met with me. He said the anti-anxiety med that my "doctor" kept increasing has been known to affect the pituitary gland and cause hormone problems. So he wants me to get off the medication, spend 5 weeks off of it, then come back for more blood work to see if the problem was just the medication, or if I need an MRI to diagnose a pituitary tumor.

Fun times.

In the meantime, I saw my OB to chat about my impending menopause. She was very serious. She said she was shocked at my results. Not only was I in menopause, but I was so far IN that I have ovarian failure. No, let's say that ovarian FAILURE. My ovaries have FAILED. They are shriveled up dead little raisins now, apparently. The OB said if I wanted to get pregnant and went to a fertility specialist, they would be sad for me because there are no more eggs left. I would need an egg donor.  She kept saying she was shocked at these results. She was not expecting them at all. I asked her where do we go from here. She said I have to start taking birth control pills again to give my body a low dose of estrogen. She said most women will spend about 30 years in menopause. I will spend about 60. SIXTY YEARS IN MENOPAUSE, PEOPLE. SIXTY. The OB said it's not a choice, I absolutely have to be on the pill for at least the next few years. I asked her about the negative side effects of birth control, having been on the pill for so many years already. She said if I had not taken the pill all those years, I wouldn't have my babies. The pill saved my eggs so I could have babies.

I wouldn't have my babies.

It was my turn to be shocked. A choice that I casually made -to be on birth control- so that I could control when I had babies turned out to be the life changing decision that has given me my four children.

Shocked. The doctor and I were both shocked.

Ovarian failure. What the heck, ovaries?!? Why are you checking out on me?? I am totally done having babies, this isn't about babies. It's about my body, yet again, failing me, and yet again no doctors figure it out until I go pounding on a million Doctor Doors asking for help.

I had to get off my medication. I asked my "doctor" if she could just give me a lower dose to start weaning off of it. She refused, and said I had to come see her in person. So at 7 am on a Saturday, I went in. I was sweaty with dread because I knew I had to talk to her about her lack of doctor-y-ness and the fact that she failed me for years and years.

She is a lovely person, my "doctor." I would love to be friends with her in real life. I just feel sorry for her because her head is so far stuck into the box of mainstream medicine that she can't see when there is a patient right in front of her who is truly suffering with real health problems. It's very sad.

My "doctor" started launching in to her spiel about just whatever she always talks about. Stretch, water, blah blah blah. Finally, I stopped her and tried to explain to her my Journey of Doctors over the past few years. I told her how frustrating and scary it is to know that doctors, who are supposed to know more than I do and are supposed to help me, have failed me time and time again. I know they all do the best they can, but their best let me live, sick and suffering, for way longer than I should have.

My "doctor" had a "reason" for all her decisions regarding my medical care. It was a bunch of crap. She would still be relying on those stupid blood tests that said I'm fine, if I hadn't brought in all the blood tests from all the doctors I've seen and the unending list of all my symptoms. Done. I'm so done with her.

So I'm weaning off this horrible medication so I can see if I have a brain tumor. super awesome. My "doctor" said the problem with this medication is that many people do really well with it, but it's virtually impossible to come off of. So, do we think we should be putting humans on synthetic medications that are virtually impossible to stop taking? Had she told me this when she first put me on it, I would have said no thank you ma'am. I'm fine being just an anxious ball of nerves because of my extreme level of stress.

As of today I'm off the medication totally. The doctor said some people who are withdrawing from it have "zingers" where they experience electrical shocks down their arms, fun things like that. I'm not having that. I'm having what feels like an electrical storm in the privacy of my brain. I feel like my poor little brain is being shocked over and over and over all day and night. I feel nauseated. I can't make decisions. I have a headache the size of Montana. My brain refuses to function. My vision is all wonky. I feel super crabby and snippy and short-tempered. Me! I know, surprising, right? (Don't answer that, Alex. That is a rhetorical question for people who only see me out in the world where I have my makeup on and my "I'm Fine" Face on.) This is a little piece of hell, going off this medication. Hell. I can't imagine what the med was doing to my brain while I was on it, if this is how I'm feeling getting off of it.

So the past couple weeks have been emotionally draining for me. I find out I'm in menopause. I have ovarian FAILURE. I may have a brain tumor. I'm dealing with serious withdrawal symptoms. ugh.

Oh, and I'm going to milk that brain tumor for all it's worth, if I do end up having one.

I'm sorry, I can't do the dishes tonight because I have a brain tumor.

Nope, can't take out the garbage because I have brain tumor.

Sorry, didn't mean to swear at you for being a stupid human, I have a brain tumor.

I think I'll have a shirt made with the logo: Pardon my insanity, I have a brain tumor. And a sticker for my car too: Brain Tumor On Board.

Gotta get some use out of it, right? And who knows, maybe it's just this stupid medicine.

All of this news left me reeling. I thought I was making progress with all my other health issues, and wham! More to figure out and deal with. When does it stop? What else in my body is FAILING me?

Alex asked me, in a very sensitive, sincere way, why it's hard to deal with the news about my menopause and ovaries if I didn't want any more kids anyway. I had actually been trying to figure that out myself. It's just a shock, I guess. You don't know what's going on in your body and then all of a sudden you find out that -only because YOU yourself kept demanding answers- your body is just not what you thought it was. My friend, Lisa, put it the exactly perfect way. She said, "Who comes up with these names? Tell your ovaries they are not a failure, they gave you 4 great kids and that's a lot more than most ovaries can say! They are amazing, they did their job and now it's time for them to retire. How about ovarian retirement instead of failure?" Love this girl.

Yes. This is the sort of soul sister I have the pleasure of having in my life now. Ovarian retirement. I love it. I guess it's just hard to know your body is "FAILING." On whatever level. Something isn't working right and it's failing. I hate failing. At anything. Even ovaries. I don't fail at ovaries!!

But apparently I do. Who knew. There is a history of crazy things happening to women in my family in regards to hormones and babies and things, so I guess it's just getting more pronounced as the generations go on. My OB told me to make sure Ella knows that if she wants to have babies, she has to do it early. How horrible is that? You have to make sure your daughter knows that she doesn't have time, like most women do. She has pressure to make decisions about her babies and if and when to have them. Sorry, Ella. My failing ovaries have failed you too.

Trying to find the positive inside my noisy, electric-shock brain. I can't believe how blessed and lucky I am to have the four babies I have. I thank God for them a million times every day. And I am beyond grateful to my family and friends for being there for me. Through everything, always. I know I have a strong circle of beautiful friend souls, just like I read about in that book years ago. I can't even begin to express how much you all mean to me. I am beyond blessed.

Alex said I found out about all this hormone-menopause-no-eggs-left-possible-tumor because I did what I always do- for the kids and for me- I just kept digging. I didn't think the answers I was getting were correct, so I kept searching. Knowing is always better than not knowing. I can't encourage you enough to follow your gut, follow your heart, find the answers you deserve if you feel like you don't have them yet. One thing I've learned is that no one is going to hand you the answers to your own mysteries. You have to be your own advocate, you have to search tirelessly, you have to ask so many questions and have so many people think you're insane. But if you do that, you'll find what you're looking for. And then you can blame everything on your possible brain tumor.

I wonder if I can get a parking sticker for a brain tumor...




 



Monday, April 18, 2016

Attack Of The Mud Puddle

I'm sorry, Philippe. I had no idea what a pain in the butt I was being when I decided it would be great fun to spend an African rainy season afternoon playing in mud puddles. When I say "playing," I mean sitting in mud, squishing the mud all over my little self, rolling in it, digging in it, pretending it was playdoh, really really embedding it into every fiber of my clothing.

Sorry. I didn't know what a horrific pain it is to get that much mud out of clothes. But now I do and I hope you'll forgive me.

Philippe was an African man who helped out at our boarding school in Africa. He cleaned, washed floors, did all the laundry for the kids who lived there. Another African man, Jean, was our cook. These two men were a constant presence in my life from the time I was 7 years old until we left Africa for good when I was 13.

I was reminded of my puddle-jumping days recently because of my twins and their shenanigans on a freezing, rainy, muddy day.

The boys had a friend over. When they are with this friend, they do not make particularly great decisions. They asked if they could go to the nearby park and hit some golf balls. I said sure, that's fine. (I didn't know how the baseball field had been turned into a gigantic pit of quick sand because of the rain.) I figured the boys would be close to home, how much trouble could they possibly get into?

The answer to that question should always be: LOTS.

I got a call from Jonah. He asked if I could come and pick him up. I asked why couldn't he just walk home? He said because he was all muddy because he had "accidentally" hit a ball into the baseball field (aka pit of quicksand), thought he could go in and get it, and had fallen in and gotten all muddy. I said fine, I'd come and pick him up. When I pulled up he was pretty dirty. He needed new shoes, new pants, everything was full of mud. I was a little irritated but I immediately had a flashback to walking into the laundry room of my boarding school, CAKED in African mud, looking sheepishly at Philippe who would have to figure out how to get the layers of mud out of my clothes. There weren't any stores there like there are here, so we couldn't just go buy new clothes. My parents shipped barrels out every two years, full of the things our family would need for the next two years. Mom had to calculate how many sizes of shoes and clothes my brother and I would need for two years, what we would want for the next two Christmases and birthdays...it was crazy. So I figured I couldn't be too upset with Jonah since I have also had plenty of mud fun in my life.

I could tell Jonah was terrified that I'd be furious. He was so surprised that I was calm - and not just faking it either. I just said let's go home and get you changed. Don't go in the baseball diamond quicksand anymore please.

Jonah walked back to the park after he got cleaned up.

A little while later, I got a call from the boys' friend. He said Ben couldn't talk, because he was stuck in the mud and couldn't get out. Hm, what now? I asked to talk to Ben. The friend said he really couldn't talk because he was stuck out in the mud. I said put the phone on speaker. So Ben and I yelled back and forth to each other on speaker. Pretty humorous.

Here's what I could understand from my silly, terrified son. A golf ball had, once again, gone into the quicksand. The dirt looked sturdy, like you could stand on it. So Ben had thought he could sneak in and grab the ball and then just pop back to the side of the grass. Wrong.

Ben's boots were stuck in the mud and he couldn't get them out. I kept yelling over speaker phone "Just pull your foot up!!" And he kept yelling that he couldn't!

Finally, I said hold on. I'm coming over. As I drove over to the park to retrieve yet another muddy son, I saw Jonah walking toward me. On this bitter, dreary day, he wasn't wearing his coat! I was getting more and more irritated. Then I saw Ben, wandering hopelessly and forlornly after his brother. Ben didn't have his boots on. In one hand, he was holding a sock that was drenched in wet, squelchy mud. One foot was totally barefoot, probably getting frostbitten. His other foot held his other sock, muddy and sticky, making mud prints with every slow, awkward step. Ben looked absolutely pathetic and broken. He was hobbling down the sidewalk slowly, knowing he was probably going to meet his death when his Mama saw him. I drove over to the side of the road, rolled down the window, and yelled "Jonah! Why isn't your coat on?? And Ben! What the heck?? Where are your boots? Why are you barefoot in the freezing cold??"

The boys came to the car, tears rolling down Ben's frozen cheeks. I felt his sorrow in the depths of my soul. He was so apologetic, and he was so sad that he had made such a bad choice and now his boots were stuck in the quicksand mud puddle of a baseball diamond, and we'd have to buy new ones, and he felt so badly. And he was very worried I was going to be furious. I actually had to stop myself from chuckling. This whole crazy afternoon was just too funny. I was mostly mad that the boys weren't dressed well enough to stay warm and take care of their bodies. They're sick enough as it is, we don't need to send Illness an official invitation to come and have a party!

Jonah said he let Ben wear his coat because Ben was so cold from being barefoot after losing his boots. That made my heart grow three sizes, like the Grinch at the end of the movie. Even when we have crazy disasters and everything is Chaos with a capital 'C', my boys take care of each other.

I told Ben I was taking him home and he was go to get in the shower and warm up immediately. Jonah took his coat back and he and I went to the park. Ben had said there was no way to get his boots back, they'd be stuck there until spring. I said nope. Mama is on the case and I'm not letting those darn boots get stolen so that I'd have to buy new ones, because we need to buy 4 pairs of boots every single winter and that costs a lot of money and I'm not buying you another pair. So we're going to go dig out the boots from the mud.

Jonah and I squished over to the baseball field. I had jumped in the car so fast I hadn't thought about wearing my own boots, so gooey mud was seeping in the holes on the sides of my sneakers. Blegh. We stopped at the side of the baseball diamond. I could see how the boys had thought the mud was hard dirt, and would be fine to walk on, because it did actually appear that way. But once you touched a toe to the dirt, you realized it was going to suck you right in and not let you out. I gingerly stepped into the quicksand, imagining I was wearing light snow shoes that would let me just spring right out of this mud puddle after I retrieved Ben's boots. I squished to where the boots were stuck several inches in the mud. I pulled on one. I wiggled it from side to side. When the mud finally let go and the boot popped to freedom, I fell backwards with the force and almost sat down in the mud. I started to giggle, with muddy childhood memories flooding my brain.

I tried not to laugh, because when I laugh in situations like these, my kids laugh, and then we're all so funny to each other that none of us can stop laughing. So I stifled my chortles. I started pulling on the second boot. I could NOT get that thing out of the mud! I was determined not to have to buy Ben a new pair of boots, so I kept wiggling and pulling side to side. I started chuckling, thinking about poor Philippe, with a pile of muddy missionary kid clothes filling his laundry room. I remember vividly slopping a little blue pail back and forth as I skipped with my friends from one puddle to the next, looking for worms. We'd find the worms in the puddle, scoop the up by the handfuls, and put them in our bucket so we could watch them and wonder what it's like to be a worm.

Jonah heard me start to laugh. He started to laugh too. I yelled "I CANNOT GET THIS BOOT OUT!!!" Especially when I was laughing so hard. Jonah cheered from the sidelines "Just keep PULLING, MOM!!!"

Finally I got the mud to loosen its hold on my boy's boot. I felt like my feet were stuck in the brown goo, and I was laughing so I wasn't feeling very strong and focused, but I finally wiggled out of the sludge. We put Ben's boots in the back of the car and drove home. Jonah asked, in wonder, why I was laughing so much. I told him I just remember the look on Philippe's face when I brought my muddy clothes to him, and here I am, with two boys of my own, full of mud. Karma, baby. It just reminded me of rainy season and puddles and my friends and the boarding school and beautiful Africa. And a ball of slimy gross worms in between my little-girl hands. There's really nothing better than a mud puddle, I still feel that way. I just can't always let my kids see how I feel about things like that because I'd never hear the end of it, AND they would think I was encouraging mud puddle play. Which, if it happens is fine, but I'd still rather not have to scrub mud out of every piece of clothing.

That night, Ben and Jonah kept checking to make sure I wasn't furious with them for their poor choices regarding The Attack Of The Mud Puddle. They were so surprised that they weren't in trouble. I had them clean off their boots and golf clubs, take showers and warm up, and bring their muddy clothes to the laundry room. After that, what's the big deal? I asked them. It's just mud. Yes, it's a hassle to clean up, and it was pretty dramatic- being stuck in that big mud puddle, but it's no big deal. Jonah kept telling the family that "Mama was LAUGHING when she was pulling out Ben's boots! She said she LIKES mud puddles because they're FUN!"

I think it's hilarious when the kids get a glimpse of my fun, childlike side, and realize that sometimes even grownups can be giggly in a mud puddle.

What Kind Of Smart Are You?

The other day, my little Ella was putzing around like she always does after school. Dibbling in this, dabbling in that. Dancing and twirling and doing cartwheels and head stands on the family room floor. As she flitted through her fairy-like movements, she announced to me that she thinks she has OCD.

Wow. This kid. Some of my children are much less self-aware than my daughter. It has taken YEARS of therapy to get some of my kiddos to be able to BEGIN to understand themselves on an emotional, physical, and mental level. They still haven't mastered this skill. Some of my boys are still pretty far away from anything that resembles "self- awareness."

And then my 6 year old waltzes in and announces that she knows she has OCD. Blow me over with a feather.

I asked Ella if she knows what OCD is, and why she thinks she has it. She said, "It's when you have to do something a lot of times and you can't stop doing it even if you want to."

Right on, sista. Guess you do know what the definition is. She said she has to do certain things even though she doesn't want to, like pull out her eyelashes. Or cut her nails until there isn't any nail left to cut (a la Aidan) (And Jonah). I asked Ella if it bothers her to have to do these things. She exclaimed, "YES! All the TIME!"

I'm finding this a recurring theme in my children's lives, and it's something I wish I could change and I can't. They all have behaviors they want to change and that annoy or hurt them, but they have no power over them. Like the tics from their Tourette Syndrome. Or the inability to focus from their ADHD. Or their obsessive behaviors from their OCD. Or their dislike of all kinds of things from their SPD. Or the fact that they can't understand what people are saying to them sometimes because of their auditory processing disorder. I would take all these things on myself in a heartbeat if I could, but I can't. It's depressing to love your kids more than life itself, and to watch them suffer and not be able to fix it.

As I have dealt with my feelings of helplessness over my children's special needs that I can't eliminate, I've come up with a strategy that not only helps me feel like I'm helping the kids, but it also does benefit them. At least that's what I tell myself so I feel like I am able to help them on some level. Whenever one of my children expresses frustration about a special need they have, I use it as a teachable moment to help them learn coping skills. Because the reality is that they probably will have these special differences for their entire lives, and I want them to be happy and functional humans, so they're going to need to know how to navigate life while suffering from tics, OCD, SPD, ADHD....

So whenever one of my darlings says, "My tic (insert any other problem- cutting the skin on the bottom of my feet until they bleed, having to pull out my eyelashes, can't keep up with my class, etc) is really bothering me and I can't stop doing it," I try to empathize, and also normalize and sympathize and brainstorm about ways to deal with the problem in a healthy way. I'm not always good at this, but I try. I want the kids to know that it's ok to be different from their peers. And yes, these things really really suck. But they are amazing people, and have a ton of gifts to offer the world, and this is their life and they have to find ways to manage their disabilities. When Ella has her tummy-rolling tic and gets frustrated because it's annoying and hurts and she doesn't want to do it anymore, we talk about how sometimes she has to do it and sometimes she doesn't. Sometimes that tic goes away and another one comes instead. So maybe it's almost time for that tic to go away. And in the meantime, she can wear clothes that are comfortable and don't sit on her tummy, because that makes her feel like she REALLY has to tic. And she can talk about how her tics make her feel anytime she wants to. And she's not alone because we have a whole house full of ticcers!

Last week, Ella, Alex and I were snuggling in our bed on a Saturday morning. Ella was talking about her tics and how she hates them. I said it must be so hard to have to deal with tics, and I'm so sorry that she has to have tics. She said, "Mama, I wish you had tics." I asked why. She said, "Because then you would really know how I feel."

Well thanks, now my heart was just ripped out of my chest. I wish I could take those tics away from all my ticcers. I would gladly have them if I could spare my kids from them. I told Ella I know I don't have tics, but I can imagine what they feel like. And I'm always here for you if you want to talk about them. Alex told Ella that although Mama doesn't have tics, he does! And he does understand exactly how she feels! And the boys all have tics too, and they all know what the tics feel like.

Sometimes it's very weird for me to live in this family of ticcers, ADHD-ers, mood disorders, etc. because I don't have any of that. I'm the only person in our house who doesn't. I feel like the oddball sometimes. Although I am so grateful that if we have to have all these issues, we have lots of people who have them so they can all commiserate together. It's an interesting life we have in this family.

Last week, Ella was upset after school because -again- she hadn't done enough work throughout the week, and she isn't as fast as the other kids in her class at doing work. She said she gets distracted all the things around her, she talks to her friends too much, she just can't pay attention. She constantly says that she is dumb, that she isn't as smart as her friends because she can't work as fast as they can at school, or she gets more problems wrong on tests, etc.

I pulled Ella onto my lap and squished her in a big Mama Hug. I said, "You know how we say the boys' brains work differently from some other people's? It's not a bad thing, it's just that their brains are different so some things feel harder for them, like school stuff, and we have to do things in a different way sometimes than our friends. Your brain is different too. You have what is called ADHD. We talk about that with the boys a lot too, so I know you've heard it before. You have it too, and it just means that sometimes it's harder for your brain to pay attention, or focus, or do what it is supposed to do."

Ella asked if she was going to take more meds like the boys do for their ADHD.

*gulp*

We always try to emphasize that there are lots of kinds of "smart." There is school smart, but there is also body smart, heart smart, intuition smart. You can be great with animals, like Aidan. You can be a super gymnast and dancer, like Ella. You can have the determination it takes to learn to ride your bike without training wheels in ONE afternoon, like Ella. Or learn how to roller skate in one morning. Or take care of anyone who needs help. You can sense how others feel, and feel their souls with your heart, like Ben, Ella, Aidan and Jonah do. You can do hilarious impressions of famous people, like Jonah does so well. You can be a social butterfly and make friends everywhere you go, like Aidan. You can be funny and silly and passionate and enjoy each minute of life to its fullest, like Ben. There are so many ways to be a smart person, and book smart is just one of those ways.

Unfortunately, until Ella is about 21, it's the way that she will be judged most harshly. It's so hard for my kids to fit into the way the world wants them to be- go to school, be good at school, manage things independently, learn easily...that's just not our strong suit in our family. We have other smarts, but school smarts are tough. I wish there was a place my kids could go for learning that would encourage them to become even more of the person they were meant to be. I wish there was somewhere they could go to school that didn't give them anxiety every morning, and make them ask at 6:03 every single morning, panicked, "Is it a school day today??" I just can't find a place that will help them flourish, strengthen their areas of weakness, and not make them feel like they are complete idiots because they can't write numbers on a scroll up to 1,000 as fast as the other first graders.

I hate that we have to combat their insecurities they accumulate from being out in the world. Why isn't the world cherishing their weak spots and, while helping them grow and learn, emphasizing how each child is so smart in their own ways? Why is it all about test scores and speeding through work and getting things done? Why isn't it more about the journey you experience while getting things done? Why don't we have more free time to spend outside collecting ladybugs and listening to the leaves rustle in the trees? Why is life so fast-paced? When you're a kiddo like my four, life is too fast, too hectic, too overwhelming. When you're a kiddo like mine, you need routine and organization, but also ways to learn what your smarts are, what you're good at. Life isn't school. School is part of a life, but life isn't school. You learn invaluable skills by going to school, that's true. But when a kiddo isn't good at the school scene, they're left to believe that they aren't good at life. But there is so much more to life, I keep telling my kids. Just hang in there. One day, you'll see how big life is and how much you can do in the world.

To answer Ella's medication question, I said we probably would be trying a new med soon. I had been a little hesitant to start her on medication for ADHD because her brothers haven't responded great to any meds in this category. They're better on the meds than off, but still, it's not like a magic switch that gets turned on when they swallow those pills every morning. But I had a talk with Ella's speech therapist, who wisely told me her own experience. She said that the way she thinks about the med question is that medication for ADHD would ideally help Ella's brain be more available for learning, since she wouldn't be so distracted by what is going on around her. She would be able to better focus on all the things a first grader is expected to do.

Wow. That was profound. I so appreciate that view point because it did reframe things for me and help me realize that it's not hurting Ella to put her on meds. It's hopefully helping her to tune out all the distractions, even a little bit, so that she can focus on what she needs to do to fit into the school that she is in. Since we don't have the idealistic, fairy school I wish we had that would teach children how to read and write, but also that cartwheels and bug collecting and hugs have value too.

Our psychiatrist and I have talked about how Ella has ADHD, but we've been waiting on starting meds for it. We needed to get her anxiety under control first, which we have done. She does really great with that, overall. She is even comfortable walking down the block by herself to a friend's house again. Whenever she can, she's happy as a clam to play outside with her friends all day. Sometimes she even goes into their houses to play. Shocker. I think the trauma of a few months ago - a dog bite followed by a concussion- is in her past and she is becoming her sunny old self again. So now we may be able to address the ADHD.

I was hoping not to have to put Ella on meds, at all. But right now this is the best we have to offer my daughter if we want her to be able to focus and understand school better. We still do a million other things to help support her too. It's not just medication. It's meds as a part of the big picture of Project Helping Ella Be Happy And Healthy. That includes several therapies, reiki, MNRI, having a terrific first grade teacher who is sensitive to Ella's needs, seeing the school social worker, making sure Ella knows that Daddy and I are always here for her, essential oils, keeping her involved in all the sports she loves so much, healthy foods...the list goes on and on.

I'm just amazed at the little being my daughter is. She is so uniquely perfect and fragile and steel-strong and determined and completely sensitive and so beautiful. I love her self-awareness. Her intuition. Her need to help others who are suffering. Her desire to do well and be a good person. (Except when she tries to shop lift a lipstick she adores and Mama has said "no" to and she tries to put it in her pocket but Mama knows she has this trick so Mama snatches the almost-stolen item out of Ella's pocket and we have a long chat about right and wrong. When it comes to lipstick, Ella would beg, steal, or cut off a limb for any shade she deems fabulous. You have to watch Miss Sticky Fingers when you're in a makeup store.)

My girl. She is such a gift to this world, which is why it breaks my heart when she feels that she is "less than." Not smart, not fast, not funny. Not true. We keep focusing on things Ella is that make her so special. The world is a better place because Ella is in it.

Monday, March 14, 2016

Enough?

You know what the worst part of a rage is? The actual rage is pretty terrible, don't get me wrong. But the worst part of a rage is the collateral damage. The people who witness the rage and are destroyed, one piece at a time, by it. Watching the rager, himself, realize how he is negatively affecting all the people he loves the most. Watching him desperately cry because he can't stop his anger, and he knows how devastating his anger is to those around him. That's the worst part.

As a mother, I don't know if I'm doing enough to bolster the positives in our family. I don't know if I'm reassuring the kids well enough that they are incredible, special, and loved beyond comprehension. But I also don't know how else to show them other than what I'm doing.

"Is it enough?" constantly haunts me.


When my littlest people have to witness a rage from the older people, the pain is compounded. Having to hold my baby while she cries, having to wrap my free arm around my little boy while he whimpers, listening to their fears that someone is going to die from this rage, someone is going to die. Or hearing my daughter weep because we will have to replace yet another broken item that was damaged during a rage, and she's worried we won't have any money left. Or not being able to finish their homework with them because we're busy dealing with rages all evening. Breaks my heart. 

I don't know if I'm doing enough. I don't know what more to do to completely stop the rages. I don't think that's even a possibility at this point. I think nervous systems are out of whack, immature, and not healed. Right now, the rages are much better than they have been during crisis modes of the past. But the rages still happen and are intense and scary. Especially to a small child who witnesses it.

I worry that my little ones are growing up thinking that this is an acceptable way to behave. I worry they will gravitate towards people who are abusive to them in the future. I worry they suffer from PTSD. I worry the rages exacerbate their anxiety. I worry. All. The. Time. I worry about the ragers and their self esteem. I worry when the next rage will come. What will happen. What will be broken. Who will be broken. Whether bodies will be broken the next time, or just hearts. I worry.

Is it enough?

Is it enough that Alex and I are here? We are a constant, solid presence in our kids' lives. We are here through thick and thin, good and horrible. We lose it sometimes. We yell sometimes. We wish this wasn't our life sometimes. But we're still here. We get out of bed every day, put our feet firmly on the floor, and show up for our kids. We hug them, kiss them, give them unending snuggles. We work through rages to get homework done. We tell them, every day, sometimes every 5 minutes, that we love them. We are proud of them. They are wonderful human beings. We teach them to be kind, we help them learn to live in this crazy, unjust world as best they can. We find ways to experience fun and joy with them. We laugh. Sometimes we way too hard and at inappropriate times. Which makes the laughter even funnier.  

We're here. 

But is it enough? I don't know. 

I grasp every opportunity that passes by that may help all of my children. New medications, new supplements, new therapies, new books, new diagnoses...I constantly try to find new answers because I think there's still something we haven't figured out, especially about the older kiddos. I think there's still an unsolved mystery. And I feel like once I find that answer, many things will fall into place and we will have more peace. I could be delusional. There may be no magical answer. This may be as good as it gets. But I live in hope of always improving my kids' lives, and my own. 

Something interesting has happened to me over the past few months. When a boy has a rage, I don't feel like I'm caught in the middle of the tornado's eye. I feel like I'm watching the tornado from a distance. Like from a safe place in my basement that doesn't have windows that will crack. I don't feel the intensity of getting caught up in it emotionally. I'm able to distance myself from the rage, protect my heart, and help my family move through it. Don't get me wrong, sometimes I totally lose it and yell and scream and get angry. Sometimes I even cry. (Which freaks everyone out, so I try not to do that.) But sometimes it happens, because sometimes I still can't believe this is my life. But there's been a change in how I am able to function independently of the rage. I like it. It makes me feel less vulnerable to my boys' energy when they are having breakdowns. I don't take on the desperate, illogical energy anymore. I can witness it from arm's length and deal with it, not become it. I definitely like that. 


I know from the outside it's easy to say to me that you think I am doing enough. That what I'm doing is all I can do and that that is enough. But what if it's not? I've realized that no matter what I say or do or believe about my beautiful children, they are their own people who have their own beliefs about themselves. I can't fix everything, I can't heal all their wounds. I can hug them and reassure them that no matter what I will always always adore them. But I can't fix the tremors of their souls when they doubt themselves and believe negative things about themselves. I can't stop my baby from worrying about our money, or worrying that her brother is going to hurt someone or himself while he is angry. I can't stop my little boy from shaking with anxiety while he holds his puppy and watches helplessly as his brothers anger foams and spills over. I try to keep them away from the rages, to shield them, but sometimes it's just impossible. I can't help my ragers when they weep for their brother and sister and the pain they have caused. I can't make my ragers truly believe that they are good human beings, worthy of love and all things good. I can't stop their rages and I can't heal all wounds.

I just don't know if it's all enough.  

I do have eternal hope. I have hope that I will find the mysterious answers to all my kid questions. I have hope that my children are growing into kind, smart, wonderful people. I have hope that they are not too damaged by their own nervous systems or the world outside our front door. I have hope that they are always going to be ok, that Alex and I have done enough to anchor their self esteem and self worth. I have hope that the fact that Alex and I are always here for them is worth something. I try not to let my worry consume me. But it always naggles at the back of my brain. I'm sure every parent has this same worry. 

I guess all there is to do is keep getting out of bed every morning, keep showing up, keep telling the kids how crazy I am about them, keep searching for answers, keep on trekking to see what comes next for us on this interesting journey of life. 

I hope it's all enough.
 

Thursday, February 18, 2016

These Boys

A couple weeks ago I took Jonah to the doctor to see if he had strep. The nurse took us back to our room. She started checking Jonah's vitals. Then she said she had to go get a different instrument. Jonah looked at me after the nurse left the room and asked what instrument I thought she would be getting. I said quite seriously and nonchalantly, "Well, they will probably have to do a lobotomy on you, so..."

I'm so terrible. I didn't know if Jonah knew what a lobotomy was, but either way I thought it would be funny. He looked at me with absolute terror in his eyes. He shrieked, "What is THAT??" I told him it's where they do surgery to take out part of your brain. For a split second, he believed me. He was so scared. His eyes looked like they would pop out of his head. And then I saw the recognition flow over his face as he realized that I was joking. He laughed with relief and humor at the way I had pulled a joke on him. It's not often I can pull one over on my boys. I had gotten him good. I also never know if the kids will have a good sense of humor about a joke, or if they'll be filled with instant rage, or if they'll cry because they misinterpret the joke as being made fun of...but I have always felt that when the time is right, and a joke could be made, it's important to do it. As long as it really is a light-hearted joke and no one is being ridiculed or hurt. Humor is something our kids have always had to practice. It's not something that has come naturally to them. As Ben has always said, they don't 'get' sarcasm. Or humor, sometimes. 

Luckily, Jonah thought this was the most hilarious stunt I had ever pulled. The nurse came back in and we were still in tears with laughter, over how Jonah had totally believed that the nurse was going to come back and give him a lobotomy. A lobotomy, instead of the thermometer she actually brought back to the room. The nurse thought it was funny, too. Sometimes, Mama can get these boys. Not often, but sometimes. Jonah still talks about how hilarious this was. It's good to see him laugh.

Last night, Ben and I were snuggling and watching TV. Everyone else was in bed and Alex was at the doctor getting diagnosed with Influenza A. There was a commercial for a credit card on TV, with Samuel Jackson as its star. He was smartly dressed in a black suit. As we watched the commercial, Ben started talking about it. 

"I can't understand how they can make commercials like this! How do they do all that special effect stuff? It's really cool!"

Then, after a few moments of silence, Ben whispers with hushed awe,

"How does he always look so good?"

I snorted and said with disbelief- Samuel Jackson

"Yes!" Ben said, "of course Samuel Jackson! He always has on the nicest suits. He's always so fancy and put-together. Wow. (again the hushed whisper) He always looks so good."

Just cracked me up. I couldn't stop giggling. My 13-year-old boy, admiring how fancy Samuel Jackson looks in a credit card commercial. Ben knows fancy. Fancy is his friend. The past couple years, Ben has instituted his own Fancy Friday at school. Every Friday, he would dress up in a suit and tie and "fancy" shoes. This year he's a little more relaxed. He's only worn his full suit regalia a few times to school. 


Ben is one extreme or the other- he loves only suits or sweatpants. No jeans. No khakis. No cargos. No cords. Only suits or sweatpants. ONCE in a great while, as a huge treat for me, Ben comes downstairs in...wait for it...JEANS. He only does it when he feels extreme amounts of love for me. On those days he remembers how much I love jeans and how I think my kids look adorable in jeans, and so to greatly impress me, he will wear them once in awhile as a surprise for his Mama. But then, of course, it's completely hilarious because the jeans are so stiff and uncomfortable for him that he feels he can't even bend his legs. He walks stiffly. He bends only at the waist. I have to help him with things like his shoes, because he really feels he is immobilized by the torture of denim. It makes me laugh so hard, because he's dead serious. 

Once he was in his room, having just squeezed his lower half into the dreaded denim. He asked if I could please help him with his socks. I said come on, you can do it! He proceeded to plumph on his bed, back first, as stiff as a board. He cried, "Mom! Do you SEE this? I can't even BEND! I can't BEND my LEGS!!" And he was so serious and totally flabbergasted that he couldn't even bend his legs, I just laughed and laughed. It was the cutest thing. So now it's our joke. He walks like a robot when he wears jeans, and we laugh about how his body truly feels like it can't bend in denim. But he does it for the love of his Mama. Once in a great while. 

I love this about my boys. I love that Ben envies Samuel Jackson for always looking so nice in his suits. I love that he wears jeans just for me. I love that I can make Jonah clutch his sides in laughter at a good-natured joke that is on him. 

These boys. Just love 'em.

Saturday, February 13, 2016

"Too Nice"

Recently, someone told me once again that I am "too nice."

It really pissed me off.

I haven't been told that for a while. When this person made the comment, I remembered how this is such a trigger for me. I've been told my whole life that I'm too nice. And it's not meant as a compliment. Nope, it's an insult. An insult disguised with words that, taken by themselves, should be good. An insult designed to weave around me and stab me from in the back, where I don't see it coming and I'm weak and can't protect myself. An insult that the person can easily laugh off, saying I'm too sensitive, I'm taking it the wrong way. But trust me, I know the difference between a compliment and an insult.

Too nice. First of all, when has there ever been too much kindness in this world? And second, why is kindness something someone should feel badly for?

The school I drive by every day has a sign that tells of important dates, things to remember, etc. This past few weeks, there has been a message on this sign. It says,

"Kindness Matters"

Amen to that. Kindness does matter. This school sign has been a personal validation for me. Sometimes I arrange the route I'm driving so I can drive by the school and see that sign that I'm sure was meant just for me. To encourage me, support me, lift me up. Kindness matters.

I recently read an article on Facebook about what makes a marriage last, happily. Guess what! It's kindness! Scientists have shown that if a couple is kind to each other, their marriage will last. If a couple responds to each other with kindness, they will maintain a happy, successful marriage. I can testify to that. Alex and I have never been a fighting, nagging couple. Sure, we have our differences. Sometimes in moments of overwhelm and extreme stress, we snap at each other. We don't agree on everything. But overall, we treat each other with respect and, most importantly, kindness. We've been together for 22 years, and we're still crazy about each other, so we must be doing something right.

There is a difference between letting people take advantage of you because you're too wimpy (aka "nice") to stand up for yourself, and spreading kindness every chance you get. I can be nice and still stick up for myself, set boundaries, and not be used by people who like to take advantage of us Nicies. But I don't have to be rude, obnoxious, or mean to get my point across. I can be nice and still be effective.

The person who called me "too nice" most recently was referring to the fact that I probably do too much for my kids. She was saying that to some degree, I enable them. I agree with this, in some ways. There are times when I will put a boy's socks on his feet for him rather than have that be the thing that pushes him over the edge into Rage right before getting on the bus for school in the morning. On occasion, I have been known to feed my child, who can absolutely feed herself, because she is so distracted that she can't focus on eating and her stomach hurts and she is an emotional mess because she is so hungry. I'm ok with that. I'm ok with doing what works for my kids. 

A friend and I were talking about this once. We marveled over the fact that both of us have children who have a finite amount of patience for the world. They work extremely hard to hold everything together, and sometimes the world asks too much of them and they can't take it and they explode. Maybe they explode because they can't find the "right" breakfast. Maybe putting their socks on is too much. Maybe having to do homework is too overwhelming. Maybe brushing their teeth just can't be done. Maybe they can't get things into their backpack easily and things spill everywhere. Maybe they have a hangnail that makes them feel like their entire arm is being ripped from the socket.

Whatever it is, my friend and I were so happy to know that we're not alone in our approach to our kids and their limited patience. We do what works. We would rather have our kids save their "hold-it-together-ness" for the bus. Or that math test. Or the teacher who says they aren't trying hard enough. Or the lunch line where a kid bumps into them. Or the fact that their socks bunch around their toes funny and bug them all day. Or that their glasses have permanent indentations on them because the dogs chewed on them, again, and we can't afford to buy yet another pair of glasses just because there are little spots on the lenses from dog teeth. Or the fact that it's too cold in the classroom and they forgot their sweatshirt and now they can't concentrate because all they can think about is being too cold. Or that the winter wind makes their little lips dry so they have to lick them and then it becomes a tic and they can't stop so they lick them until they're raw and every type of chapstick Mom buys hurts or doesn't feel right and they can't stop licking them even though it hurts and they know they shouldn't lick anymore...

I'm ok with doing what works for my kids. I encourage and celebrate independence, of course. But I also understand my kids, and how they work so hard to function. I'm ok with being nice to them so that Home is one soft place they can fall in the world.

I do know I tend to be a little bit more on the enabler side of things. I also know, thanks to much therapy of my own, that this is due in part to the fact that all my babies were born too early, too fragile, too weak, and medically unstable.

When you are faced with death at the beginning of a brand new life, it scares the pants off you. You're never the same. You wait and watch for any sign that things may be going wrong again. You hold your breath for all the years that follow, and wait for the next trauma to happen. You return to the NICU day after day after day, aching to hold your sweet babies next to your skin, to smell their tiny heads and marvel at their unbelievably small legs that your wedding ring can encompass. You return, day after day, terrified to find out what horrible thing happened during the night while you were away.

What next? Infection? Brain bleeds? Illness? Losing precious weight? Not feeding correctly? Not breathing while they eat? Heart stopping? Jaundice? Blindness? Intestines not working right? Spinal taps? RSV? Not maintaining their own body temperature? Failed hearing tests?

You feel guilty for going home without your babies. You feel guilty for sleeping. You feel guilty for being tired after an endless day at the NICU, sitting, waiting, willing your babies to breathe. You feel so guilty for being healthy while your babies are so sick. So much guilt.

Then you finally get to bring your fragile little ones home, and you're deeply relieved because this is what you've been waiting for, for months. And then reality sets in and you realize your round the clock nurses are gone and you are responsible to keep these tiny babies alive. By yourself. After living with such intense, constant, complete terror and dread for weeks and months, wondering if your babies will still be alive when you return to the hospital each day, calling every night at 10pm to find out how many poops your babies had and how many ounces they gained and if they had a bath and if they had a fever and if they're still alive, you are the one who has to keep your baby alive. It's all up to you. You check your teensy little babies, wrapped in cords from apnea monitors, as they lay in their cribs and make sure they're still breathing. You make sure they take their caffeine every day to keep their hearts pumping blood the way they're supposed to. You watch tensely every time you feed them to make sure they don't forget to breathe while they suck. When they invariably do forget to breathe, and start choking and gasping for air, you bring them back to normal, you remind them how to breathe. Every time you feed them, you have to remind them how to coordinate sucking and breathing. You race from a deep sleep to their room in the dead of night when their apnea monitors frantically beep, to find they unhooked a wire when they thrashed in their sleep. Your heart doesn't recover for three hours and you spend the rest of the night lying on the floor next to their crib to make sure they don't die.

You wonder, how in the world can you be expected to keep these fragile little micro-preemies alive? You worry you won't be able to save them if there is a problem. You worry about all the challenges they will face in life because of their prematurity--if you are able to keep them alive that long.

When you drive, you spread your hand in between your micro-preemies in the back seat so one baby can hold your pinky and one can hold your thumb, so the wailing will stop, because if they can't see you their anxiety is through the roof and they think you've abandoned them. Your fingers fall asleep, then your hand, your arm, your shoulder. But you are so grateful that your babies are alive, you don't care. You want to ease any pain they feel, you want to comfort them and make the world a beautiful place for them to be. You are so deeply grateful for these babies that you don't care if your entire arm is numb for the car ride.

If your baby absolutely cannot sleep on their own because they finally have what they've been craving all that time in the NICU--you-- then you set up a recliner in your bedroom and sleep with your angel on your chest for as many nights as it takes to make sure your baby feels secure, loved, not alone.

You shield your babies from the world as best you can, while still exposing them to real life. At the grocery store, if the check out person even looks at your toddler, he cowers and shrieks with fear. So you learn to put your body between your toddlers and strangers. So your darlings will be spared the excruciating fear of having other people invade their universe by just looking at them. You explain over and over and over to every person who touches your life why the little boys act this way, why they can't sit up yet, why their brains are different, why they are so anxious, why they crawl funny, why they aren't walking yet, why you have to take them for eye checkups and heart checkups and developmental checkups, why you take them to therapies when they are just babies, why you can't leave them with babysitters, why you won't let other people take care of your babies, why they are scared of noises, why you keep the lights low, why you're afraid to let other people feed them who don't know what to do if they stop breathing, why they need tubes in their ears, why they so easily get sick, why you refuse to expose them to illness...

The world doesn't understand, but you have a glorious, secret world, you and your babies. You have watched them fight to survive. You have watched them escape death so many times. You can feel what they feel, you can understand the world through their eyes. You know what they are frightened by. You know how to shield and comfort and soothe them, and most of the time it is only you who can do those things. You are their comfort. You know their souls. You know their hearts. It doesn't matter that the rest of the world thinks you are depressed, or crazy, or overbearing, or rude, or insane. It doesn't matter because you willed your babies to live and they did. You showed up every day that they were in the NICU, and you held them and kissed them and talked to them and sang to them and listened to the unending beeps of machines that helped to monitor them and keep them healthy and watched as nurses knew how to care for your babies much better than you did. You rejoiced when your babies were finally strong enough to let you give them a bath, when you finally got to change their diaper instead of nurses.

You stayed strong for your babies, even when you felt so weak. You saved most of your tears for the nighttime or the pumping room at the hospital. The only thing you could do was to show up. Every day. For your babies. So that is what you did. And you were one of the lucky families who got to bring your babies home. The moment your babies were born, so early, you vowed you would do anything and everything to help them survive this crazy, unpredictable world. You have had death visit your doorstep. You have had to come to terms with the fact that your babies may not make it. You have had to deal with so many things most parents can not even fathom. Life or death. Absolute terror. Helplessness. Guilt.

So when it comes to me enabling my kids, you have to take into account our history as a family with four preemies. You have to look at the big picture. You have to understand the depths of frantic, all-encompassing fear and despair we have clawed our way out of. You have to remember the PTSD we most certainly suffer from. You have to understand that we are so grateful for the lives of our children, who all almost didn't make it, that we really don't care if we seem like we are "too nice" to our kids. We don't care if we have to help them put their shoes on in the morning, or find their coats and gloves for them, or help them wash their hair in the tub, or bring their dishes to the sink or their underwear to the laundry room.

In the grand scheme of things, our children are fine. They are able to do all these things on their own if they need to. But when you are used to paving the way for your children, used to thinking 12 steps ahead so they have everything they need and won't feel stressed and have a meltdown because the world is just too overwhelming...this is a hard habit to break. Should I force my kids to be more independent in some areas? Probably. But what parent can honestly look at themselves and not see at least one area where they could do better? I recognize that my area is being "too nice." I see my weakness. But I also see my big picture. I was there through all the heartache and uncertainty of my children's births, hospital stays, milestones missed, endless therapies, medical scares...I was the one who showed up for them every minute of every day in every way possible. I am the one who was sleep deprived for a decade because my children couldn't sleep. I am the one who fights for every single thing they need. I am the one who watches for signs of some new worry. I am the one who finds help when we are faced with that new worry. I am the one who does not take their lives for granted because things so easily could have gone a different way.

So I apologize if the outside world considers my being "too nice" a fault. If you have lived through what I have with my four children, then, and only then, can you criticize or judge what kind of parent, or person, I am.

You can be "too nice" and still be steel-strong. You can be "too nice" but not let people use you and walk all over you. You can be "too nice" and do things for your kids that they probably don't need you to do, but you do it with gratitude for their lives, and you do it because doing it makes their lives easier. It helps them store up their patience and tolerance and energy for the crazy, unpredictable world outside of our home. It's who I choose to be. So please stop insulting me with your "too nice" comments until you have walked one single moment in my shoes. I choose to spread kindness, and "too nice-ness," and it starts in our home. Yes, I have things I need to work on and do better at. Everyone does. But if the world sees one of my biggest flaws as being "too nice," maybe that's not the worst thing in the world.

Maybe I should not let that comment irritate me so much. I'll work on that. In the meantime, I'm still going to be "too nice."




Energizer Bunny

So much has been happening lately, I haven't had a moment to write! You'll be happy to know that Jonah FINALLY got an IEP!!! The school team agreed that they now see him struggling academically as much as I have always seen him struggling at home. Whew. 

Of course I cried buckets at his meeting. It's my MO. I'm The Cry-er. 

I had a 504 meeting for Aidan in the morning. Alex was out of town that whole week. (Perfect timing. Not.) Aidan's meeting went well. We talked about more ways to support him academically, and also with homework. We added a few more supports so that hopefully his anxiety will start to decrease. We'll see how it goes. 

Then after lunch we had Jonah's IEP meeting. I didn't cry at all during Aidan's meeting! I was very proud of myself. And at Jonah's meeting, I started out just fine. I was worried. If he didn't get the IEP, I wasn't sure what in the world we were going to do. I was nervous. The team started reading through Jonah's evaluation. I was doing fine. We keep reading. And reading. And then comes the part about where he falls on different rating scales based upon how teachers, parents, and Jonah himself, see that he is doing emotionally, academically, psychologically, etc. How much is ADHD is affecting him, how social he is, all that good stuff. The first couple of rating scales, I was still doing fine. But the rating scales were color-coded. And it felt like there were a million of them. And they all basically said Jonah is tanking in almost every single area. 

I felt frozen in time. I couldn't even hear what the school psychologist was saying anymore. I couldn't understand the words she was using to explain the graphs. That said my son was doing terribly in so many ways. I fought back tears, I struggled to maintain my composure, I tried to swallow and breathe and take a deep calming breath and think about how I was NOT going to cry...

and then the team turned to the next page of the report and there was yet another graph, charting out how much my boy struggles...

and that was the straw that broke the dam holding back my tears...

and then I ugmo-cried. We're talking way past "ugly cry" here, people. It was ugmo. It was one of those trying-to-not-sob-out-loud-so-then-you-choke-on-the-sob-and-cry-even-harder-as-your-face-contorts-and-you-want-to-shrivel-and-die kind of cry. Bad. Really bad. And really mortifying.
 

When our sweet, supportive advocate whispered if I needed to take a break out in the hallway, I ugmo-cried even harder. The team stopped talking and turned to me. To watch me ugmo-cry. To make sure I was ok. I squeaked (because even my voice wasn't working right) that it's just so hard to see in black and white and red on these graphs how much my little boy is struggling. And failing. The psychologist smiled at me reassuringly and said that that's why we're meeting, to give Jonah the help he needs. 

I don't think I stopped crying for the next 30 minutes. Thankfully, the team just kept on going with the meeting and let me weep until my eyes were red and puffy and my nose was red and puffy and my cheeks were red and puffy. 

We did take a break eventually. I waited in the hallway of the front office to take my turn in the bathroom. And then one of the ladies from the front office- who knows me pretty well because I'm constantly there...with Ben's forgotten glasses. With Jonah's forgotten iPad. With forgotten books, and homework, and water bottles, and picking up sick boys...we see each other a lot. So this sweet angel walks down the hallway to me with a box of tissues in her hands. She gave me the kleenex and said I could wait in a room off the office if I wanted to. What I wanted to do was hug her and cry until there weren't any more tears left in me. I'm worn out from these meetings, from fighting for my kids, from being their watch dog 24/7. I was so touched by her kindness that I burst into MORE tears and mumbled something about just needing to go to the bathroom. I wasn't making a lot of sense at that point. 

On my way out of the office, the other sweet angel working that day held out her hand to reach mine, and clasped my hand with both of hers and said "Be strong. Stay strong." Which, you guessed it. Made me cry more. I said to her "Stop being nice to me, you're making me cry even harder." 

That's what I love about our schools, our community, my friends. Wherever I go, someone is there with a helping hand, a supportive word, and kind box of kleenex. I emailed my office ladies the next day and thanked them for being so supportive of me, and for trying to help me find calm and comfort during a very stressful time.

We got Jonah's plan all worked out, and I feel like he is going to have a great opportunity to turn things around and succeed, given this help. I'm so sad for him that things had to get this bad before we were able to get him help. But I'm looking forwards, not back. From now on, he has help and support. He'll be ok. We got what we needed.

The second day after Jonah's IEP was in place, I saw the stress physically lifting from his shoulders. I saw his heart fill with peace. I could literally see how much stress relief he already felt from having more support at school. Is life completely perfect for Jonah now? Not by a long shot. But at least we have accomplished a major milestone by getting him an IEP.

Aidan on the other hand...Aidan is such a mystery. We tweaked his 504 Plan so has more support at school. He has a math learning disability, so part of that is that he can't memorize math facts. He is able to use other ways of doing math- like using a calculator or multiplication table. He needs to learn the process of doing the math problems, but the facts themselves he can find through other means. A couple times he has refused to go to school, I think mostly due to anxiety. I'm hoping that with all these supports in place and the teacher really being supportive and on board with everything, Aidan will start to feel successful and less anxious.

Ben is off his medication that helps with mood stabilization and rages. Eek. So far, things are better than when he first went on the med. But life hangs precariously in the balance right now. I feel like we could take a dive at any time into Anger Crisis again. He weeps that he is doing the best he can, and I do know he is. But sometimes even when people do the best they can, they still need medication to help support them, because their best isn't cutting it. Sad, right? We're walking a tight rope, hoping for the best.

The other day, Jonah was standing by the front door with his coat and backpack on, about to walk down to the bus stop. Suddenly he exclaimed, "The bus is HERE!" I thought he was joking because we've never missed the bus. We're always out there on time. But he wasn't joking. Ben was in the bathroom still trying to fix his hair. I hustled him out, stuffed his arms in his coat, threw his backpack on him and pretty much shoved him out the door, all while yelling to Jonah to ask the bus driver to wait a minute. 

The funniest part was Ben. Typically, during the time before he was on the med to help his anger, Ben would have exploded in this situation. I was worried about how much to push him because since being off this medication, he's a little bit fragile in the anger department. He CAN NOT be rushed. Ever. His go-to speed is slower than a snail. In all situations. He loses his mind if he has to be rushed. So this whole incident was pretty incredible, because to my great joy, my boy did not freak out. He didn't get frustrated. He just let me rush him out the door. I watched from the window as Ben flubbered down the driveway. (Flubbered: a Carrie-ism, meaning to scuffle-run with arms and legs flailing- a la Phoebe from "Friends."  Also known as a hilarious shuffle-walk. Because you have a 50 lb backpack on and your mom says you must RUN down the driveway to the bus.) All the while Ben's flubbering down the driveway, he's yelling in a funny voice "But I didn't finish my HHHAAAAIIIIRRR!!!!! I didn't finish my HHHHAAAAIIIRRR!!!" It cracked me up and made me grateful for the day. The day I never thought would come a few months ago. You never know when Anger will appear, and you live in constant fear. When Anger does not appear, I rejoice. I rejoice in my funny boy, flubbering down the driveway, yelling about his hair. 

Ella started karate with Alex this morning. Since she was 3 and watched her brothers and Daddy doing it, she has wanted to participate. Her brothers all quit, much to Daddy's dismay. Ella believes she is not involved in enough activities. Dance, OT/Gymnastics, swimming lessons...that's not enough for our girl who loves to be busy. Daddy is delighted that she wants to try karate. I don't use the word "delighted" lightly- Daddy doesn't get delighted on a regular basis. But this morning, side by side with his little girl in their uniforms, Ella's hair just fitting back into a ponytail, Daddy was truly delighted. The class went great, and Ella was ecstatic to show us all the moves she learned already. Let's hope she sticks with it. For Daddy's sake, if nothing else!

That's life. It keeps going. Ups and downs and ins and outs. These kids keep me hopping. Aidan has to be checked for glaucoma. Ella may have it too- they're watching her. Ben has his annual cardiac checkup this week. I found out I have scoliosis (I absolutely hate the word "scoliosis." Hideous. I've decided it will be called "C Spine" in our family, because my spine is shaped like a C.), because I don't have enough on my plate, so I needed to add PT twice a week. That's just what I needed. Jonah's tummy keeps hurting on and off. Ben's hip hurts because he fell on some ice while on the school ski trip. Aidan's poop was green two days ago, which made him extremely worried. As much as Ella loves her teacher and friends, she is counting down the days until summer vacation. Every morning is met with a sigh when I answer her question of whether it is yet ANOTHER school day. We just keep going. Like the Energizer Bunny. Remember that commercial? "STIIIILL going!!!" That's us. Still going.