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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 L. 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 L. Jackson

"Yes!" Ben said, "of course Samuel L. 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 L. 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 L. 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.