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Saturday, September 27, 2014

Eyes On Great America

I have to find a new route to get to the kids' eye doctor. Every time I take Ben to an eye appointment, I forget, until right before it comes into view, that we pass Six Flags Great America on our drive. And this ALWAYS sets off a meltdown. 

Because remember when you promised that we could go to Great America this past summer? And Dad promised he'd take me? And then he had his hip surgery and didn't take me? And you said you'd take me? And you never took me? And WHY can we NEVER go to GREAT AMERICA?? 

You get the picture. Major. Meltdown. Every. Time. 

I need a new route.

This time was made worse by the fact that Ben is totally 'off' right now to begin with. I don't know what in the world is going on, but all my kiddos are quackier than normal. Some people say it's because of the new moon. Well, if that's the case, I hope the moon gets old REAL fast because I'm REAL tired of the chaos around here. 

For the past year, Ben has been complaining about his eyesight. Let's keep in mind, he is a hypochondriac. So when a complaint is verbalized by my sweet darling, I empathetically sympathize with him, but take it with a grain of salt. When the complaint keeps recurring, I take it more seriously. So for a year, he's been complaining. He can't see the board at school. He can't read unless it's very close to his face. He never ever wants to or is capable of reading his books for English Language Arts that he is supposed to complete every couple weeks and do reports on. So actually, this has been going on more than a year, now that I think about it. People say he must be lazy. I hear that a lot from ignorant people. My boy is not lazy. He has diagnoses that make living like 'normal' people and behaving like 'normal' people impossible at times. That doesn't make him lazy. That makes him a hero.

I took him to the eye doctor three times this past year. The first and second time, she said he's fine, but have him come back in 4 months and we'll just check to make sure everything is still ok. This past week was checkup number three. And still, 20/20 vision. Doesn't need glasses. The doctor said Ben can hold books closer to his face if that helps him feel more comfortable, and should sit in the front of the classroom. Which he already does. 

The door to the doctor's office had barely shut when Ben exploded in total frustration. He swore, he cried, he yelled, he freaked out. He called the doctor names I cannot repeat or my Mom would tell me to go to my room. Because he felt I didn't believe that his eyes bother him. And the doctor doesn't believe him. And he already sits in the front of the room. And he CAN'T SEE, he said.

And then. To top the whole meltdown off, to add insult to injury, we passed Great America again on the way home.

I thought for sure my son's head was going to literally explode. He just couldn't take all the injustices he felt were bestowed upon him in one afternoon. It was a terrible drive home, and I had to pull over at one point to have him climb in the back seat so he could rage without hurting me or Ella or causing an accident. The debate in my head while a kid is having a rage and we're driving is do I race home as fast as possible because that's the only place I can ensure everyone's safety and calm my child down, or do I pull over somewhere so we don't have an accident and wait for the anger to subside, which it won't for a very long time, which will scare the other kids in the car with me…it's always a dilemma.

This particular day I decided to just ignore the rage as much as I could and get us home as safely and quickly as possible. As I helped Ben calm down in his room, I assured him that I did believe he is having eye trouble. If he says it over a long period of time, and it's a consistent complaint, I believe him. 

That night I went online to Google other possibilities for vision problems. I couldn't find anything. I told Alex "I WILL find out what is going on and how to help Ben." His response was "I KNOW you will." Amen, brotha.

I got in touch with a friend who has experience with eye problems that regular eye doctors do not test for or diagnose. I talked with, who else, our OT, who knows absolutely everything about any question I have related to anything about my kiddos. I would be so lost without our therapists. Seriously, they are angels sent from Heaven JUST to make my journey easier, this I am sure of. 

The information I got is that it is possible to have vision problems that are not detected by a regular doctor's tests. So Ben could have legitimate eye trouble that is just not being tested correctly at our eye doctor's office. There are a whole host of things that could be going on with his beautiful eyeballs that could be causing him frustration. So on to a different kind of eye doctor we will go. I will not leave a stone unturned until everything is tested and ruled out about Ben's vision. Because I can tell he is suffering with something, so that is unacceptable as long as I am his Mama.

It may be nothing. Ben may just be frustrated about his vision for no reason that any doctor can see (pun intended). But I'd bet that there is something going on that we can identify and fix. Because that's what I've found for everything over the past 12 years. Everything is identifiable and fixable. At least to some degree. The worst part is not knowing. Not knowing why your kid can't focus on his math homework. Not knowing why your kid will only eat yogurt and nothing else. Not knowing why your kid can't jump when all the other kids her age can. Not knowing why your kid can't wear jeans. Not knowing why your kid refuses to flush a toilet and walk in sand. Not knowing is the worst for me. If I know- if I have a name for something- I can fight it, research it, conquer it, tackle it, defeat it, explain it, understand it…and then understand my babies better. And love them for who they are.

Daddy is saving the day and taking Ben to Great America tomorrow. Maybe I can keep my route to the eye doctor after all. 

Monday, September 15, 2014

Pondering

I just dropped Ben off at his drama class. He takes drama now. My son takes a drama class. And, get this, before he left for class, 


HE. PUT. ON. A. PAIR. OF. JEANS. 


I know some of you are like yeah, whatever, what's the big deal? But if you have a sensory kiddo and there is something they never ever ever do and then they do it, wow. Just wow. That's how much Ben likes drama. He put on jeans. AND changed into a polo shirt. What?!? Dude. This is serious. The kid never in a million years ever wants to wear jeans. Ever. He'd rather be raked naked over hot coals. He was so proud, bouncing down the stairs to show the whole family how he was wearing jeans. Like Jonah, he said. Jonah wears jeans but Ben ONLY wears sweat pants. Incredible. We have witnessed a miracle this evening.

I'm not sure I've ever been more proud of him. He said last week before the first class, "Mom. You're just going to drop me off, right?" Uh, I guess so. You don't want me to come in? "NO Mom. Just drop me off." Ok! Back off, man! I'll just drop you off! 

Last week the drama teacher (who is amazing and sensitive to Ben's quirks and so supportive) said Ben and Jonah could come to a class and see if they felt like it would be something they'd like to do. They both loved it, but Jonah wants to do drum lessons, so he decided that he'll do that for now and wait on drama class. Ben wanted to sign up right away for drama. His best buddy is in the class, so it's perfect. You never know if he will stick with something, but at this point, it doesn't matter. What matters is that he tried something new. Without me. He is putting himself out there. He is participating in the world. He is being social. He is wearing jeans tonight. 

On the way out the door tonight, Ben hesitated. "Hm. These jeans are tight, though..." he said. I could tell he was on the fence about whether he should jet upstairs and change into comfy, reliable, safe sweat pants. I said you only have to wear them for an hour. And you look so handsome! So off we went. I pulled up to the front door of the studio and Ben jumped out of the car. He turned to wave as he walked in the door. He looked so…typical. He looked like any other 12 year old boy, thick sweatshirt and phone in hand. But I know what an enormous, mind-blowing thing this is, even if Ben doesn't realize it himself. That's what Mamas are for. They realize the enormity of each of your milestones even when you're oblivious because you're just living your life. 

You know how in the Christmas story, the Bible talks about how Mary "pondered these things in her heart"- that has always been my most favorite sentence in the whole Bible. I've always been struck by that. Before I had children, I used to think what does that mean? Pondered in her heart. How do you ponder something in your heart? But after having my four special babies, I totally understand where Mary is coming from. I totally get "pondering in your heart." Every Mama does it. We watch our babies. We hold the memories of them close to our souls, in our soul. We worry about them and think about them and hope for them. We problem solve about how to help them through tough times. We love love love them. Fiercely love them. We hold all these things and ponder them in our hearts.

I'm holding Ben in my heart tonight and pondering him. Pondering and cherishing how he chose to wear jeans tonight. How he didn't need me to stay with him at drama class. How he's trying something new. How he's doing it alone, without Jonah. How he's happy doing it. How I trust his drama teacher knows how to push Ben, yet support and encourage him. How he's shaping the person that he is and will become through this experience. 

And did I mention he's wearing jeans tonight?

I'm holding yet one more memory of my sweet child close to my soul tonight, and pondering it in my heart.

It's Ok To Breathe

I'm becoming Me again. After 12 years of living solely for the small people in my life, after living for them and with them and through them and because of them, I have 6 hours to myself every weekday. I have 6 hours every day where I don't have to lift anyone. Don't have to buckle carseats. Don't have to cajole a little one into wearing underwear AND shoes at the same time. Don't have to wipe a butt. Don't have to pour milk. Or wipe up spilled milk. Or convince a little one that it is a good thing to flush a toilet. Or make three different lunches because the first two weren't satisfactory for my little sensory child. Don't have to keep track of anyone except me. 

I feel time differently now. I have to refamiliarize myself with my frame of reference for time. It takes a whole lot less time to do anything when you're alone. I can't believe how easy it is to pop in the car and run to the store for milk. Just milk! No stress, no arguing about whether we need fruit snacks or ice cream, just me and my milk. I can breathe. 

Breathing can be uncomfortable too. I like to lose myself in the tide of my children. I like the chaos of my kids and all their friends chattering and running and dressing up and finding the makeup I've hidden in my closet so it wouldn't be found. I love it when one of my babies needs a hug because my arms can make the stress of the day evaporate, just for a little while. I love taking care of them. I love spending time with them. I love hearing their laughter and the funny things they say. So when I have time to breathe, or get milk, all by myself, it's still a little uncomfortable.

Last week, on Monday, I had an uncomfortable day. I didn't see any friends to brighten my hours. I didn't have a project. I only had physical therapy for my silly knee caps that don't move the right way. It was a little depressing and a lot uncomfortable. I started to feel panic. What if this is how it's going to be forever? What if it's always uncomfortable and boring and depressing to be without my kiddos? What if this is as good as it gets?

But on Tuesday my parents came for an overnight visit. And even though they were privy to some wicked hot tantrums that night, they reminded us how much they love us all unconditionally. They took me out for breakfast after all the kids went to school on Wednesday morning. At first I thought "30 minutes for breakfast with them! That's not enough time for anything!" But then I remembered that I wouldn't have kids along, and you can do a whole lot in 30 minutes when you're a grownup without kiddos. 

I know I am incredibly lucky and blessed. Seeing Mom and Dad always boosts my spirit, gives me courage to continue this journey of crazy life. I hope I am for my kids what my parents have always been for me. They are strength, wisdom, unconditional love, and when I talk they hear me. They don't just listen, they really hear me. They are a safe place for me to land. No matter what I'm dealing with. I hope I am that for my kids. I hope I've learned enough from my parents about being a parent to pass it on to my kids. I am lucky and blessed to have the parents I have. They are rare and beautiful souls; they make the world a better place by being in it. They are a shining example of what every parent should strive to be. Just there. Parents should just be there for their kids. Always. No matter what. 

So my day started off great, because not only did I get to have a special breakfast, but I got to share it with my Mom and Dad. Then I went to the grocery store and bumped into three friends! I got to have a chat with a "bff," as Ella calls all good friends, as she searched for ginger. The sun in my day kept getting brighter.

A friend texted me to see if we could get together for lunch and talk about our special kids. I haven't seen this friend for a while, and to know that she was thinking about me was a gift.

Through some interesting circumstances, I've been put in touch with a woman who I'm sure is another one of my soul mates. Alex fondly says I have about a million soulmates, everyone is my "soul mate." Because I love (almost) everyone and am so exuberant about my friendships. But he's wrong, I'll have you know. There are only a very few people in this world who I feel a connection with that constitutes "soul mate." Well, maybe more than a few, but still not millions, as my husband insists. It's really funny to me because in the last few months, it's happened twice where I met someone for the first time and just instantly knew they 'get' me, they 'get' my kids and my life, and they're one of my soul mates. That hasn't ever happened to me before, when just meeting someone. 

Anyway. The conversation I had with this particular woman this week was incredible. I have a tendency to forget that I am not alone in my unique life with my special kids. There are other families out there experiencing the same exact things. This woman has an older son who has Tourette Syndrome. She was talking, and finally I told her "Listen. You're going to make me cry. I'm going to cry right now, because you 'get' this and me and my kiddos in a way that no one gets us. Unless you've lived it." It was incredible. 

Every Thursday, I get to be a helper in the cafeteria for the Kindergarten classes. I am the Milk Helper. I make sure each little Kindergartner gets either white or chocolate milk. Love it. Ella's class lunch overlaps with Aidan's, so every Thursday I get to hug both of my littles while they eat and socialize with their buddies. It's a little hard for both of them to have me leave. They linger and hug tightly and there's a little sadness in their eyes as they follow the line to recess.

I love watching kids at school. Especially the little ones. Everything about them is precious and fleeting. I can't count how many zippers I get to zip every Thursday during my half hour of helping. 
Or milk cartons I have to open. Or kiddos I take to the bathroom so we make sure they get back to the lunchroom ok. Or sweet faces that light up as they see me and wave like crazy because there's a MOM that they know at SCHOOL! Soon they'll know how to zip their own zippers and open their own chocolate milk. Soon they'll hide a little of their excitement in seeing their friend's mom in the lunchroom because they're too cool to jump and wave at me from down the hallway. I love being witness to these little things in all these kids lives. I silently, mentally, give each one of them a hug from the mommy or daddy or grandparent who sent them to school that day. I rub a back now and then and reassure a tearful 5 year old that he'll get to see Mommy soon. I love Thursdays.

I got to have lunch with my mother-in-law after volunteering at school. Again, without kids! It's so strange not having to multi-task in 50 directions while I eat my lunch. I just eat my lunch. So weird. We chatted, we caught up, we laughed. It was lovely as usual. It lifted my spirits on such a gloomy, Novemberish September day.

I realized after all these things happened that lifted my spirits, that breathing into this new life of mine- a life without constant kids- will be uncomfortable at times but I'll be ok. I have to remember I am not alone. I'm not alone. I have to remember I can reach out too, I don't have to wait for people to find me. I have to remember it's ok to breathe even when it feels weird and different and unsteady. 

Monday, September 1, 2014

Tummy Worry

The other evening, Ben got a really bad stomach ache. He was writhing in pain, moaning and crying. He is a hypochondriac, but even hypochondriacs get sick sometimes for real. I could tell this was real pain. The pain went on for hours, despite my best efforts and Mommy Tricks to try and help him. When he was going on hour #4 of the horrible tummy ache, couldn't get to sleep, and nothing was helping, we finally decided that we needed to go to an emergency room. 

When we broke the news to Ben, instant panic set in. Even though he had cried that he wished he could have his stomach cut open instead of having the pain he was in, the thought of something serious being wrong with him put him over the edge. His eyes bulged in fear and he peppered me with anxious OCD questions for the next three hours. That's how long it took for us to be seen at the ER. I was not a happy camper. It wasn't even as if the ER was crowded. Not fun.

I tried to keep Ben calm, but it was almost impossible. If I didn't answer a question JUST right, he would repeat it. If he didn't feel like I was telling the truth, he'd ask again. If he forgot that he'd already asked me something 47 times, he'd anxiously ask again, just in case the answer had changed.

Do you think I have cancer?
Do you think I have a tape worm?
Is it my appendix?
Are you sure?
My teeth are chattering I'm so scared.
Do you think it will be serious?
Do you think I'm ok?
Do you think it will be good news?
Do you think it will be bad news?
Are you sure?
Where is the doctor?
Is that the doctor?
Will I have to have surgery?
Is it my heart?
Do you think it will be good news?
Are you SURE???
My legs are shaking I'm so scared.
Do you think it's a tumor?
Do you think I'm going to faint?
Do you think I'm having a panic attack?
Do you think the doctor knows we're here?
What is that beeping?
Am I dying?
Will they cut me open tonight?
Do I need a blood test?
Will I ever need surgery?
Will I ever need surgery on my heart?
Am I dying?
Will you ever need surgery?
My head is hurting I'm so scared.
Am I going to go into a coma?
Do you think it's cancer?
Do you think it will be bad news?
Do you think it will be good news?
ARE YOU SURE???

No. I'm not sure. Which is why we're at the ER in the middle of the night.

Imagine that script, repeated about 3073 times over 3 hours. I tried to stay patient, I knew he can't help all this. All this anxiety. All the OCD. It's like a loop in his head, questions over and over, he can't rest until he feels like he's gotten just the right answer. And seconds later, he may feel like he needs the right answer again. I knew he was scared. I knew he was very scared. He has bad memories of hospitals. Nothing good comes from a doctor's visit for Ben. But after three hours of this constant interrogation from my son, I was wiped out. Still no doctor.

Finally, the doctor came in, poked Ben's tummy, asked what meds he's on even though I'd already gone over that in great detail with the nurse three hours before. He said we could do a blood test, a urine test, and an ultrasound, but Ben looked "unremarkable" for signs of appendicitis. By this point Ben had had some toots and was feeling a little better. I decided that if he had no other symptoms, like a fever or nausea, we were going to skip all the tests and just go home. We'd see how things went from there. I was done with this ER.

On our way out, the front desk lady decided she needed to tell me her life story, even though I looked like death warmed over and was practically falling asleep standing up because of the intensity of our night. She did not pick up on my social cues that I would rather not have a great big conversation at that moment, and that I was rather frustrated with the care my son had received. She proceeded to tell me that she "avoids the ER like the Plague. Drink a ginger ale and get over it," she told Ben. Awesome. Great advertising for the place she works.

I finally just walked out. She kept talking louder so she could tell me more about her life, but I couldn't be polite while in the state of pure wiped-out-ness I was in, so I just kept walking. I did wave behind me, as an awkward way of saying hang in there, Miss Pessimist. Maybe try smiling once in a while. Maybe don't chew off a Mama's ear at 1 am when she's been waiting with her anxious, ticcy, OCD son, without being seen for 3 hours and expect her to be nice. Maybe get a new job so you're happier...


We went home, Ben manic with relief. Now he wasn't asking his anxious OCD questions, he was happily chatting on and on about everything on God's green Earth. And Mama was tired. So I finally told him he had to calm down so I could concentrate on driving in the middle of the night, exhausted as I was. 

Sweet Ben. You don't realize the weight of the world that he carries on his shoulders, every day, until something like this happens and you see his worries flood to the surface. He worries all the time, whether he lets it out or not. He constantly worries. About everything- real or not remotely real. He just worries so much. People who don't know him well are not let in on this secret about Ben. He expertly hides his Worry, but it eats at him like a parasite. If he is forced to hide his Worry, like at school, he internalizes it and the force of his anxiety is even stronger. I'm grateful he has the support of family and friends who love him, whether he shows them his Worry or not. I have to believe this will help him thrive and be the best Ben he can be.

Hopefully we won't have any ER visits anytime soon. Ben worries even if it's not him needing medical care. If anyone in our family needs to see a doctor about anything, this scenario of Worry resumes. I read an article by a mom who has a child with special needs about some things that we don't tell other people that we worry about. One thing is that we are terrified of becoming sick or dying. Because who would care for and understand our special children like we do? Who would 'get' the nuances that make them who they are like we do? So I tell God every day that I am not allowed to become sick or die, at least until I am 297 years old. Maybe by then my special children will be ok enough for me not to be physically in their daily lives. Of course my spirit will always be hanging around, watching out for them and probably irritating them. But until then, I am Invincible Mama. Nothing will hold me down, break me, or stop me from being who I need to be for my children. Don't even try. I will stay awake all night, if that's how long it takes to be seen by a doctor, answering my son's terrified questions over and over and over and over…I will do that for my son. 

We keep working on the Worry that eats at Ben. I know a little about this Worry, and it is not fun. It can consume you, as I was a first-hand witness to the night of the ER visit. Granted, that was an anxiety-producing experience for anyone. And usually Ben can hold himself together much better than he was able to that night. But that experience shined a light on the Worry for me, and reminded me how my son suffers so much every day with his Worries. Sometimes I forget that my kids have special needs, because we're just going about our daily lives, doing what is normal for us. Especially when something unusual, like an ER visit, happens, our special needs are magnified and I'm reminded how my kiddos need such personalized, patient, constant care.

The day after the ER, Ben said "Thanks for taking me to the ER, Mom." I said I thought you were mad that I made you go! He said "I know, but it shows how much you love me, that you would get me help even when I didn't want to go. That you would get me help when we didn't know what was wrong." My heart smiled. My sweet boy. We refuse to let Worry win. 

Wednesday, August 27, 2014

Hiccups

Seven days ago my life forever changed. All four of my children woke up in the morning and got on a school bus. For all-day school. All my children. And get this-- there's no baby at home to take care of! Usually once a kid is in preschool, we have another baby around to love and snuggle and cart around while I do my errands. Not this time. They've all gone off to school. This is a huge Life Change for me. After 12 years of taking constant care of other humans, 24 hours a day, 7 days a week, there's just little old me home. Alone. For 6 hours, 5 days a week. I do have to take care of Ollie, the Dog, but that's not quite the same as taking care of a human. He sleeps on the couch all day. None of my humans have ever done that.








 Four days before school started, I had a mental breakdown. I got all the kids to bed and then bawled my eyes out. Because all my kids were going to school, but especially because my littlest baby was going to school. How can such a small person leave their Mama and get on a bus and be gone for 6 hours and go to the bathroom without my help and eat lunch without my help and ask questions without me and not have me around to kiss her owies and tell her I love her?? I told Alex that I like Ella too much to share her. I want her home with me forever. She of course has challenging moments, we all do. But the enchanting way she has of saying what's on her mind, or the way she runs down the hill while holding Ollie's leash on our walks, with her hair bouncing behind her, or the way she says things like "*sigh* It's a beautiful day just like in Arrandell" (from 'Frozen'), or the way she calls VW Bugs "lady bug cars", or the way she wraps her sweet, slightly sticky arms around my neck and feels my hair and says "I love you, Mama"…how will my days go on with my sweet, enchanting Ella? I like her too much to share her.

But the day came to put her on the bus. I don't show my kids how heartbroken I am that they leave me and go to school. Because most of them have anxiety about leaving me, and if they saw that I was just as sad as they are, they would never leave the house. And I'd have to homeschool. Which I would not be good at and they would not enjoy. So I focus on the amazing achievement of having made it through another summer, and the excitement of the upcoming school year, and how big the kids are, how much they've learned and grown, how great it is that they are getting more independent and that they're able to get on a bus and go out in the world and do what kids are supposed to do. I focus on that. I'm not a Crying At The Bus Stop kind of Mama, not that there's anything wrong with that. I just hold my sadness in my heavy heart until I have a little privacy to shed a little tear. Or two. Or 40,000.

The first morning of school, Ella was THRILLED because I had to wake her up when I woke up Aidan. Last year she was so disappointed that I never woke her up like I did her brothers. She would sometimes go back to her bed, close her eyes and pretend to be asleep, and DEMAND that I woke her up. So to be old enough to be woken up, wow. That's a big deal at our house. (The kid needs to learn to sleep later than 5:30 am and then maybe she'll get woken up now and then!) 
"Moooom! We're too old for pictures!!"
I had made Ella and Aidan a little checklist of things to do in the morning so Ella knew how to get ready for school. Aidan was such a helper. He got dressed because Ella was excited to get dressed. He volunteered to go potty first. They ate breakfast together. They were so excited. Ben and Jonah came out to the bus stop with us, to watch their baby sister FINALLY get on that bus that she has watched and envied for so many years. There wasn't a tear in sight (from the kids at least. My tears were hiding in my heart.) as the bus pulled up after I got all my First Day pictures. Ella was right at the front of the bus line and climbed up those bus stairs like she knew just what she was doing. She sat down in her seat and waved to me excitedly. It was a much different scene than when I sent Ben and Jonah on the bus the first time to Kindergarten. I have a picture of Ben looking out the bus window in tears. It's a terrible, gut-wrenching picture. I don't know why I captured that moment. But Ella was so happy to be a Big Kid and get on that school bus with her big brother and all her neighborhood friends.

The first couple days of school have gone well, overall. The kids are all a little overwhelmed. As of day 1 1/2 of school, Aidan had already lost his assignment notebook. Ben and Jonah are a little freaked out and overwhelmed by 7th grade, but they're hanging in there. No major panic attacks have happened since the night before school started, so that's good. The kids are all very tired by the end of the day, and Ella was upset on Friday because she raised her hand when it was potty time but no one called on her so she didn't go. I emailed the teacher, who is one of my top 3 Most Favorite and Amazing Teachers On The Planet and let her know a little bit more about Ella. Including the fact that advocating for herself is still something we're working on. The teacher emailed me this morning and said Ella had already had a bathroom break! Hurray! 
She made it! First day of Kindergarten accomplished!
Two days ago, Ella got off the bus and collapsed in my arms, as usual. As I carried her into the house and snuggled her warm little body, she said softly that she didn't get to eat lunch that day. Trying not to overreact, I asked her a million questions about her statement. She said the teachers and kids told her she couldn't have lunch. Or snack. Hm. Strange. I thought there had to be something fishy about her story, but just in case she really didn't get lunch I emailed the teacher. Again. And told her what Ella had said. The teacher was horrified and said that she was in the lunchroom and was almost positive that all the kids had food in front of them. She said she'd make sure to watch Ella more closely. I said maybe she just didn't want to eat or something, who knows.

That night, I had the time and energy to make Grandma M's homemade lasagna! I never make things from scratch for weeknight dinners, it's always something just thrown together, because I'm stressed and tired. AND we ALL sat at the dinner table TOGETHER to eat said lasagna!! This also never happens in our house. We usually let the kids eat where they fall once they come in for a landing at dinner time. They're too tired and overwhelmed from their days to cooperate about coming to the table to chat with the fam. The fam can irritate and aggravate everyone's fragile moods. So this was a rare occasion. 

We chatted. It was lovely. I love spending time as a family when we're not fighting. I asked Aidan how his lunch was, what he had eaten. He told me. Then out of the blue, little Miss Ella pipes up that she had the BEST corn dogs for lunch. AND they had PEACHES at school! 

uh…what now???

I subtly asked her more questions about her lunch-- if I freaked out about the fact that she had told me she didn't get lunch, I emailed the teacher, etc, she would have shut down and cried. I wanted more details to make sure I knew which story was the true one. Sure enough, she had all kinds of details about her delicious school lunch that day. I gently reminded her of how she had told me that she didn't get to have lunch. She stopped like a deer in headlights and said "Ohhhhhh. I guess I forgot that I did get lunch."

I emailed the teacher again and said "Here is why I love 5 year olds." Luckily she thought the story was funny and wasn't annoyed with us at all. Whew. 

So the hiccups continue. I'd like to say that after awhile, the kids will get the hang of school and there will be fewer hiccups, but I know my children. We're going to have chronic hiccups all year. It's our MO. I'm ready. I have more energy since the kids are all at school. I'm so excited to see them climb down those bus stairs in the afternoon. I'm so content when all Ella wants to do is sit on my lap and snuggle after school. At least until a friend rings the doorbell to play. Maybe this change of everyone being in school will have some positives. I'll have to get used to being alone, and I don't like that. But there are positives. For instance, do you know how much more you can get done when you're a grownup and you're alone? As a mom, I have in my head how long it will take to do whatever. Like how much time I need to allow for kids to get shoes on. Or how long it will take them to go potty. Or how many times they will fuss about something they think is necessary to buy at the grocery store. Or how many times I'll have to put someone into or out of the cart. I figure all these things into my every day, and make sure we have time for all of it. But now there is no one to buckle in a car seat. No one to take to the remote bathroom at Hobby Lobby. No one arguing about the fact that they would really prefer to go to the library naked and shoe-less. It's just me. I just get in my big ol' empty van and go. I just put the leash on the dog and walk-- there's no arguing about who is going with and what vehicle they will be riding that I will end up carrying home on my hip. I feel guilty about this, but logistically life is just easier when the kids are all at school. I can get so much done. So when the kids come home, I'm ready for them. 

Bring on the hiccups. I can see some big ones coming our way, but I'm ready. We're all growing in new ways this year, and growth can bring pain. But in the long run, growth is always good, right?

Monday, August 4, 2014

Osoko Yemna

Last week, Alex had hip surgery. He had a tear in part of his hip that they had to repair, and extra bone that they had to shave off. The surgery took longer than expected because once the doctor got in to look at Alex's hip, he realized there is more damage than they thought based on the MRI. No one came to tell me that Alex was fine, things were just taking longer, so that was a little harrowing. When the doctor says the surgery will take 1-2 hours and it takes 3 1/2, that's pretty significant, if you're the one in the waiting room. But he made it through. 

We didn't realize the extent to which Alex would need help after his surgery. Thank the sweet Lord in Heaven my parents were here for a couple days to help out. Nana and Papu cleaned, cooked, shopped, played with the kids, fixed my curtains, did endless loads of laundry, took the dog for about 300 walks…they were completely exhausted by the time they left. Every time I passed a room, I was shocked that it was still clean. Because Nana and Papu were cleaning machines. At one point they said they can't believe how much work there is to do here, and how few people there are to do it. Namely, me. I said Yep. Welcome to my world. 

The first few days after his surgery, Alex couldn't move his leg by himself. He couldn't go into the bathroom by himself. He wasn't supposed to shower or get his wounds wet. He was pretty helpless, poor guy. While Mom and Dad were here, I was able to focus mostly on what Alex needed, so that was good. Despite my generous offer of a permanent air mattress in the basement, my parents had to go home after a couple days here. So then the real challenge began. 

Alex has an exercise machine for his leg that he has to use three times a day for an hour and a half each time. I help him get his leg into the device and then he's on his own, to lay there and have his leg exercised by the machine. When he's not doing that machine, he has PT exercises he has to do twice a day. When he's not doing that, he has to be hooked up to this fancy ice machine (which I'm constantly buying bags of ice for, carting the bags upstairs, and emptying them into this crazy machine, then getting Alex's hip placed just right into the big ol' ice pack) to ice his poor, bruised hip. When he's not doing that he has to wear his hip brace. And whenever he is laying down, he needs to have calf compressors squishing his legs so he doesn't get a blood clot. And he can't get any of this done on his own. So Nurse Carrie is on duty. The machines are all very heavy and full of velcro. I'm so tired of fighting velcro. It sticks to everything it's not supposed to stick to. 

Then there are the meds. Alex can't ever remember when he takes his medicine (his brain is still foggy)-- either the pain meds or the regular vitamins he's on-- so I have to keep on top of that too. He's a good patient though. He does what I tell him to. He knows I'm his source of food. He texts me when he needs something. I call him from my cell phone when I need to ask him something and I'm downstairs. I say "Hello, this is Downstairs calling…" and he says "Hello, is this the Newsom Rehabilitation Facility?" when he calls me. We crack ourselves up.

Days before Alex's surgery, we were downtown Chicago with my brother and his family, having a fabulous day. We did so many fun things together, made really special memories. And then I realized my wallet had been stolen. Perfect. Because I need more stress. Perfect. 

Our darling children have been giving me a run for my money while Alex is out of commission. They sense weakness. They sense I'm at my wit's end. They sense I'm so exhausted that I don't have much fight left in me to make them do what they're supposed to do. I can't leave Alex for more than an hour because of his rigorous hip-py schedule, so we can't go anywhere or do anything. Our gracious friends have been helping, bringing us groceries and taking care of the kids when I have appointments. I don't often ask for help (stupid, I know) but I have been wracking my brain since Alex's surgery, trying to figure out who and when and where I can get help from for the kids. I'm calling in all my favors. Otherwise we may not all make it out alive from this post-surgery-end-of-summer-craziness.

We've also made some important discoveries about our boys during this time of fewer meds. We've discovered they legitimately need those meds. Without them, they can't calm down to sleep and they are very, explosively, irrationally impulsive. All the time. A few weeks ago when I started seeing that the boys were really struggling and all my "voodoo" (as Alex calls it) (I prefer the term 'alternative' or 'natural') wasn't really making a dent in their struggles, I began to feel like a failure. Like somehow the fact that we can't make it in life without our kids being on meds is a reflection on me and my obviously poor parenting skills. If I was a better mom, my kids wouldn't need meds, I kept thinking. But I talked to my support team (my parents, Alex, our therapist) and they all helped me realize that this does not have anything to do with poor parenting. This has to do with the fact that the kids have a chemical imbalance in their brains. This summer experiment shows us that the boys really do have ADHD. It gives us reassurance that they do need these meds in order to get the most out of life. At least right now. Hopefully someday we'll be able to go off of meds and stay off. 

I think the culmination of Alex's surgery and the insane amount of stress and busy-ness all on my shoulders has let me see more clearly that the boys need more help. The boys'  inability to calm down at night has been difficult for Alex and I to handle this summer. Their impulsivity and intense, angry, overreactive outbursts have been quite a challenge. And the outbursts have gotten more frequent as the weeks have gone on. The boys overreact to all kinds of little things, and while the tiny rages aren't as long and violent as they used to be, something has changed. The boys no longer demonstrate anxiety about having these mini-rages out in public. Being out in public is no longer a deterrent to difficult behavior. This scares me. No matter what we do, someone is always having some sort of total meltdown about something. If I take the kids to get ice cream. Or we go on a vacation. Or to the zoo. Or someone doesn't get the flavor of bagel he wants. Total meltdowns. I'm hoping that by being back on ADHD meds, the boys' impulsivity will be contained a little better. I'm hoping we can go on family outings again and not expect that there will be huge problems each and every time. I'm hoping the meds will help the boys regulate a little bit better. 

As long as I feel like I know for certain that the boys do actually have a challenge that will be helped by medication, then I'm ok putting them back on meds. I just don't like second guessing whether or not they have an actual diagnosis, like "do they actually have ADHD or is their impulsivity a byproduct of something else?" I just want to make sure I'm doing the best thing for each of the kids, not just lumping them all together onto bunches of meds. So this summer experiment has validated the fact that the boys do need some of these meds to help them function better.

All the boys are back on their sleepy med. Aidan is at a half dose. Tomorrow Ben and Jonah will start their ADHD meds again. I'm waiting on Aidan. I want to see what happens when school starts. He hasn't had the kind of impulsive outbursts that his brothers have been having all summer. And his appetite is better. And he has tried eating NEW THINGS!!! Things he NEVER would have tasted in the past. Cucumbers and poppy seed muffins and red grapes!! This is just incredible. Remember he was the one who needed feeding therapy a couple years ago to address his SPD surrounding eating? He was the one who ate ONLY Yoplait vanilla yogurt and Cheerios for an entire year? Now he is eating all kinds of things! Incredible. I'm not quite willing to give that up yet. I'm not ready to say he needs ADHD meds back on his plate. 

One funny thing-- funny in hindsight. Last night I finally had time to make a nice family dinner. I had a roast in the oven all afternoon, mashed potatoes, veggies. I laid everyone's plates out on the table, proud of my non-cooker self for making such a healthy dinner for my family. Alex is the chef in this family, not me. So meals have been less-than-exciting since Alex can't move. Anyway. I was proud of my hard work.

I went across the street to gather my children and greet our new neighbors who had just moved in. As I was chatting, Aidan came out of our house and yelled across the street that Ollie the Dog had eaten all our dinner.

?!?!?!

I was torn between screaming bloody murder and just falling on the sidewalk laughing. I decided screaming might prematurely scare off my sweet new neighbor and her little children. She should at least have the opportunity to get to know me before she's scared out of my life. So I just laughed. Seriously. Only at our house. The dumb dog ate the whole darn pot roast, going to everyone's plate on the table and gobbling the meat up as if I never feed him. 

I went home. I gave the dog a very large time out. I made everyone else grilled cheese for dinner, thanks to a neighbor who had bought us bread earlier that day. Seriously. What else can happen at our house?

I feel like I have the Newborn Numbness. You know when you have a brand new baby and you're up every two hours to feed the little thing? Or maybe that's just when you have preemies. But since I don't know any different, we'll just assume every new mama feels that way. I have that level of brain-dead-ness because of exhaustion. One or two kids wet the bed every single night. Yes, I've called the pediatrician. And our holistic doctor. And we're doing everything they say, with one exception. My biggest bed wetter will not wear the tiny device used to train kids to wake before they pee. His anxiety and sensory issues make it impossible for him to agree to try this thing that will set off a super loud alarm every night as he is laying in slumber. At least one kid has a nightmare most nights. And there is always a shrieking human next to my ear at the buttcrack of dawn, yelling about how there is nothing for breakfast. 

Trying to remember everything for everyone, trying to keep everyone fed and clean, trying to keep the house running, trying to make sure my hubby remembers all his exercises and meds, trying to deal with the never-ending litany of mini-rages that fire up all through the day…

Brain dead. That's all I have to say.

My dad said today that he has a new diet for anyone who is interested. It's called the Newsom Diet. All you have to do is come and live at my house for a couple days, he said. He lost three pounds in 2 1/2 days living at my house and taking care of everything that needed to be taken care of. This doesn't explain why I am not a size 2, but whatever. Glad it worked for him!

I always try to look on the bright side, glass half full, all that jazz. But sometimes things just suck. Life is overwhelming. Having your wallet stolen is overwhelming. Having your husband go through surgery is overwhelming. Having kids with special needs is overwhelming. I get worried that this is as good as it gets. I tell myself it'll get better, easier, happier, blah blah blah. And I do know it will. But being stuck in the house with 4 warring children and an invalid husband and a roast-snarfing dog is not my idea of a picnic. Tomorrow's a new day. Hopefully with an hour of peace, as I go to my chiropractor appointment, knowing that Alex is tucked into whatever machine he is scheduled to be in during that hour, knowing that my dear, dear friends are making sure my 4 little monkeys are taken care of while I take a breath.

As I was expressing my eternal gratitude to my parents for everything they have done for our family this past week, they told me that in the native language of the African tribe we used to live with, Gbaya, there is a saying: "Osoko yemna." It means many thanks. And also that 'thank you' is not enough. 

Osoko yemna to my friends and family and therapists and doctors. "Thank you" is not enough, no matter how many times I express it. Thank you. Osoko.




Thursday, July 17, 2014

I Don't Want To Be A Single Parent

I never ever ever ever want to be a single parent.

Alex has been out of town for the past 5 days. I was as sick as a dog the first three days: migraine from rainy weather, Ella's cold that she was nice enough to share, and terrible allergies. Fun stuff. The kids have been normal, so that's a good thing I guess. Not more challenging than usual, but normal-challenging. Ella was thoughtful enough to wake me up every morning at 5:30, so I didn't need to set an alarm. Ben and Jonah were often my bookends of the night- Ben usually wakes me up just after I fall asleep, and Jonah wakes me up just before Ella wakes me for the day. Ella's been having bad dreams, so she wakes up in the middle somewhere and shoves me over in bed and climbs in. 

Ben had a tough time dealing with Daddy being gone. His sadness over missing Dad was tangible, especially at night. Usually when Dad is gone and Ben is missing him, he wears Daddy's clothes around the house. He globs around in a shirt and "squishy pants" from Daddy's closet that are about 13 sizes too big, ties them up with a belt and wears a smile from the comfort that Dad's clothes bring him. This time Dad has been gone, Ben decided it was a good idea to use Dad's cologne as a way to comfort himself. I thought this was sort of ingenious. Until Ben's room began to wreak of cologne. He sprayed his blankie with it every night and snuggled into a Daddy Smell with a smile. After wiping the tears away. He also sprayed the cologne into the fan as it blew, so the smell was distributed throughout his room. What you have to take into consideration is that Ben also has a cold, and his smeller is broken. So in order to effectively smell Dad, he has to spray a billion times more cologne just to smell a hint of it. Nice. Ben's room will smell like Dad for the next 40 years.

Of course the van broke. So I had to get that taken in to the fix-it shop. Apparently things are leaking and things shaped like a Y are broken. Who knows. It's all Greek to me. Luckily we have Alex's car home to schlep people around in. 

Yesterday my sweet mother-in-law came to my rescue; I had double booked because I thought Alex would be home to help out. So Jonah needed to be at a psychiatrist appointment at the same time Ella needed to be dropped off at camp. In opposite directions of course. So Grandma dropped Ella off while I took Jonah to the psychiatrist. Then he and I ran to the grocery store. Then we got home, put the groceries away, and Grandma drove down to the fix-it shop with me so I could drop the van off and come home in her car. Then I cleaned up dog vomit while Grandma cleaned up the ants that were eating a lost cracker on the kitchen floor. Then Jonah needed help sewing his new pillow. Then I left to get Ella from camp. Grandma took the three boys to Panera, where we were going to meet for lunch. On my way over, Grandma called me so that I wouldn't freak out when I saw the scene. Aidan had pinched his finger really badly in the bathroom door, and was wailing his head off. They were sitting outside on the sidewalk in front of Panera, Aidan screaming, with a bag of ice on his hand. Pinching your finger that badly really does hurt.

I held Aidan close to me while Grandma took the other kiddos inside to try and figure out what to eat. The Panera manager came outside to make sure Aidan was ok. She said there was a place right across the street where they could do an X-ray to see if he had broken his finger. She asked AIDAN if he thought he should go get an X-ray. He nodded at her through tear-leaking eyes, and said in a wobbly voice "Yes, I think I need an X-ray. I think I'm dying." 

I had already done my Mommy Emergency Assessment and knew that there were no broken bones. I said no, we're not going to waste time and money and energy and tears going to get a needless X-ray. Believe me when I tell you, I'm sort of an expert on pinched fingers. I do have four little children, after all. So Aidan wailed at me with anger because he felt certain he needed an X-ray and I had foiled his plans. 

We decided eventually that Aidan was ok enough to go in and try some lunch. My family was milling aimlessly around. They hadn't ordered yet and Jonah was having a snit about something. So lunch was completely chaotic. We got food in front of people, some ate, some didn't. I didn't even order until everyone was almost done, and took my food to go because who knows when I'll have time to eat some days. Ella cried through part of lunch because she had some owie that seemed imaginary to me, but I'm sure was real to her. Aidan continued to cry through parts of lunch too. Jonah was irritable through all of lunch. Ben felt so badly about being with Aidan when he pinched his finger, that he kept trying to find ways to comfort Aidan. I just held Aidan on my lap and tried to feed him soup. And get the lunch over with as soon as possible and get the heck out of there, because it was a disaster.

On the way to the car, I apologized to Grandma for the chaos. We laughed and she said "It's not like this every day, is it?" I didn't know how to answer. Because most days are like this. Some are even crazier, some are better because we don't have as many injuries, but every single day is just nuts. My days start at 5:30am and since the kids don't take Clonidine anymore, they go to bed later. So my day ends about 9pm. I get about one hour to myself every day. Literally. Because there is always someone who needs something-- a shoe tied, a butt wiped, a snack, vomit cleaned up, a toy fixed, a lost thing found, a book to be read, a back to be patted, a bandaid to be found, sunscreen to be put on, a bike tire to be pumped. There is always something fun I want to do with the kids-- make glitter clay, play with shaving cream, go to the pool or the zoo or the library or a park. And of course you have to make sure the kids have at least one clean shirt and pair of shorts, make sure they take a shower or bath ONCE in a while, make sure they are fed, make sure the dishes get washed and the dog gets fed and walked, give everyone all their meds twice a day, we get to all our therapy and doctor's appointments, and change those pee sheets every single morning. Throw in a few dozen fights you have to break up, a couple of intense ragey moments that you have to de-escalate, a hundred or so irritable moments that you have to diffuse and redirect, and many "I'm bored" hours that you have to navigate. And when you finish doing all those things, there is exactly one hour left in the day to do anything you want. And by that time, I'm so completely exhausted, I don't want to write, or read, or talk, or think. So I watch a mindless TV show and crawl into bed. So I'm ready to do it all again in a few hours. 

This is why I neglect my brother and parents and friends and neighbors. It's not that I don't desperately love and miss them. It's not that I don't feel lonely. It's that I am so completely and thoroughly exhausted, I don't even have the energy to speak. This week has been especially tough because Alex has been gone, but every day is like this. I love to be with friends and talk to my family on the phone and blog and read and paint…I just am too tired. Being a single parent, even for a week, is exhausting. Being a single parent of four kids who have special needs is…there isn't a word for how tiring it is. Of course we've had special, beautiful moments this week too. But boy, am I tired. 

Alex is due home tonight. His first flight got cancelled. He got on a different one. Which got delayed. We'll see when he actually gets home. Meanwhile, I'm just praying for energy. And patience. And thanking the sweet Lord in Heaven that I am not a single parent all the time.