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Tuesday, December 9, 2014

The Vomit Bowls

We have this set of bowls. They come in three sizes, and are silver metal. They are scratched and dented and dull from the use and love they've received over the past 12 years. 

These bowls are used for all kinds of memory-making. We mix ooshy, gushy meatloaf in these bowls with our hands and squeal with the grossness of this sensory-rich activity. We put on the aprons and chef hats that Nana and Papu gave us one year for Christmas and bake Christmas cookies. We mix pancake batter to pour into Star Wars-shaped molds. We make Ooblegh in the bowls (what our kids call a "lol-squid"- corn starch and water. Not a liquid. Not a solid. Oodles of fun.). We take these bowls out to the backyard to make bubble juice in the summer. Or fill them with pudding to paint our bodies with on the patio. Held with tiny hands, sloshing from side to side, these bowls have also been known to make their way out to the sandbox so kids can make "sand poop." So many memories.

These bowls are also our family's Vomit Bowls. During Ella's latest round of throw up this weekend, I was thinking about how many experiences this set of bowls have been involved in with our family. And how we probably shouldn't throw up in the same bowls that we mix birthday cakes in. Maybe it's time for a separate set of cooking mixing bowls.

When one of us needs to throw up, I run for these bowls. There's a small bowl, a medium, and a large. I quickly do my Mama Triage Assessment. How large is the thrower upper? How much throw up is likely to come out of this person? Where is this person throwing up? Do we have to fit this bowl with this person in a car seat, or a bed, or on a lap while sitting on the toilet? What size of bowl can this person hold if I need to run for a towel to mop up escaped vomit, or a wash cloth to cool a head? What sized bowl is this person likely to hit, how good is their aim? Do they need the biggest bowl because they aim with their vomit about as well as they aim their pee into the toilet? 

"GET THE BOWL!" is a cry rarely heard in our home, because we haven't had that many vomit illnesses. We're more of a respiratory/asthma/ear infection family. So when the cry goes out, we spring into action. We RUN. Vomit is serious business at our house. It's so nice that our kids are now usually able to sense when vomit is going to happen, and can aim pretty well into whatever sized bowl Mama has deemed appropriate. There have been many times when the kids were younger that I've had to clean vomit chunks out of precious blankies, sheets, teddies. Sometimes it's been so bad, I just can't do it. I give the wad of soiled stuff to Alex and just say "Deal with it. I just can't anymore." Then you know it's really serious. 

Ella started throwing up Sunday at 3 am, and didn't stop until I took her to the ER at 1 pm later that day. She was severely dehydrated by that point, despite our best efforts at keeping her sipping water. She just couldn't keep anything down. She had a fever, and was just a shadow of herself. There was a fireman getting clinical hours who was assigned to us along with our nurse. He did Ella's initial assessment and asked if anyone else in our family was sick. I said Aidan just had had Fifth's disease. He said "Remind me what that is?" Hm. I think you need more hours in the clinic. He even had kids! Maybe it's just that my kids catch every kind of exotic-sounding illness that wings its way past them, but don't most parents know about Fifth's disease? As my mom reported at Thanksgiving, it got its name because it's the 5th most common childhood illness. (Thanks, Mom! I really didn't know that! Now I sound so knowledgeable when I spout out that information!) So shouldn't someone in the medical field know what the 5th most common childhood illness is? 

Anyway. Blood tests were done at the ER. Ella got an IV. She had a fever and a red throat. After some fluids, she actually started peeing again, and thought it was hilarious that she had to pee in a cup. And let me tell ya, it's a lot trickier to pee in a cup if you're a girl. Boys have it so easy. 

Ella had a terrible 6 hours at the hospital. I had a hard time sitting there, letting the nurse and the fireman do what they had to do to Ella, when I knew that if I just knew how to be a nurse I would be doing it much better than they were. I wanted to rip the needles out of their hands and yell "Just let me do it!" But instead I held Ella's head and her hand and made her look away from what the nurse was doing to her, while the saddest tears rolled down her cheeks. I wanted to catch the tears and stuff them back in her tear ducts. "Don't waste those tears!" I've said more than once in the past few days. Don't get dehydrated again! Stop crying! It's heartbreaking when your small, fragile child is so sick she can't even cry or fight normally. It made my heart break into a million pieces. I hate it when I can't fix Stuff for my kids.

But eventually, Ella started humming softly to herself. And then she started wiggling her foot in time to her made-up song. My baby was coming back to life.

At one point the nurse was scoffing in disbelief at Ella because she had the IV in and the "hard part was over," but Ella was crying because the tape used to hold the IV in place was pulling at her hand. As calmly as possible, I explained that Ella has Sensory Processing Disorder. Bandaids are one of her triggers that cause intense, excruciating pain to her. And anxiety. This is also why she didn't want to eat her popsicle (Too cold. Too red. Too drippy.). Not all kids like popsicles, shouldn't a nurse know that? She acted like Ella was from Neptune because she wouldn't eat a popsicle. When I told the nurse that Ella won't drink Pedialite, she kept saying they have different flavors…yeah. I know. But she eats and drinks a limited amount of things, and Pedialite is on the NO GO list. Sorry. What other ideas do you have? Instead of fighting me about how I must be wrong about my child that I have known for 5 years, and you have known for 5 hours, maybe just move on and see if you could help me find solutions. How about that.

The doctor eventually said Ella was clear to go home. With anti-nausea medicine in one hand and the Small Vomit Bowl, a sippy cup, my coat, my phone, discharge papers, my purse, and my daughter wrapped in a blanket in the other hand, we made our way out into the winter night. Ella couldn't put her coat on because she had bandaid-wrapped cotton balls on the places she had gotten her blood drawn and her IV. That arm was immobilized. When she has bandaids on, it's the equivalent of a cast on a limb for other people. Makes life interesting. 

On the way home, Ella held her Small Vomit Bowl on her lap and moaned softly from the pain in her tummy. She is the bravest, strongest, sweetest sick person in the world. While this sick, she has gotten off her station on the couch and helped various brothers find their shoes, or their coats, or picked up a mess that they refused to pick up. All without me noticing until it was too late, otherwise I would have relegated her back to her couch. Can you believe it? While this sick, hardly able to move, she has gotten up to hug my legs while I'm carrying a basket of laundry and tell me she loves me. This child is an angel. Pure and simple. That's the only explanation.

Yesterday morning, Jonah woke up sick. Very sore throat, fever, nausea. "GET THE BOWL" was heard ringing through the house. He didn't end up throwing up, but the Medium Vomit Bowl was taken with us when we brought Ella and Jonah to the doctor. The doctor tested for strep, and low and behold, they both have it! Now, why didn't they test Ella at the ER? I don't know. She spent 24 hours more than necessary in agony because they didn't test for strep at the ER. I thought about asking for them to do that test, but there was so much going on, I just forgot about it. *sigh* Why does a Mama have to be in charge of everything? Can't a doctor think about something like that so Mama doesn't have to think about everything?

We took our Small and Medium Vomit Bowls home, on the laps of sick kiddos in carseats. We got them medicine to make them feel better. I got them loads of Gatorade, and juices, and Pedialite in every flavor- just in case Ella agreed to tolerate one of them. However, Ella has informed me that the Gatorade tastes gross. She will gag if she has to drink ANY of the Pedialite. And she doesn't want and juice. 

Humph. 

So water it is. Ella and Jonah are irritated with me because I keep harping on them to drink every 10 minutes. I'm not going back to the ER for more IV's! I have to hold Ella down to get her antibiotics in her twice a day. The kids didn't want any of the foods The Kitchen was offering yesterday. It's hard to be sick. Whatever it takes, we'll nurse them back to health. The Vomit Bowls are never far away.

I think I'm going to buy new bowls, just for kitchen activities. I thoroughly wash and disinfect the Vomit Bowls before they move back to being cooking bowls, but now that it's been made public that we use the same bowls for both activities, I'm worried friends and family won't accept our delicious cakes, cookies, and meatloaf anymore. Never fear, I will get new bowls. 

I laid in bed last night thinking about my dear Vomit Bowls. I am so thankful for them. They have contributed to so much comfort in our family. Baked goods, vomiting, sand play…where would we be without the luxury of these bowls? There is something strangely reassuring about running for one of these sturdy, cold bowls when my child is sick. Something calming about holding their hair back while they throw up, knowing the Vomit Bowl will be there for us. Sturdy. Constant. Tangible. Real. Thank you, Vomit Bowls. You make being sick a little easier.





Friday, November 14, 2014

Detective Mama

For about the past year, Ben has been complaining that he can't see right. He refuses to read. He can't finish his books for his English class book reports. He has to be read to. In his IEP, he now has an accommodation for audio books, because reading is met with such resistance. I keep taking him to the eye doctor, three times this year (!), who keeps saying his vision is fine. Which makes Ben frustrated enough to spit nails, and swear words, all the way home from every appointment. Because he feels like something is wrong.

So I decided I would believe Ben. There has to be more to this eye story than meets the eye. (ha! see what i did there? pun intended. so witty.) I talked with our OT, who is wiser than any wise human being should ever be able to be. She suggested that I take Ben to a developmental behavioral optometrist, who could check for eye issues that go beyond just sight. We got on the appointment waiting list two months ago, and today was our long-awaited appointment. 

I took Ben out of school this morning and drove the hour to the appointment, with tentative hope blooming in my heart. Is there something real going on with Ben's eyes that we can fix? Have we just missed it all these years? What if I'm doing all this work and it's nothing? I should believe Ben, even when his complaints go beyond things that I understand, right?

We got right in to see the doctor. He was unassuming, pleasant and direct, and got right down to business. No small talk. He has a faint accent that I came to completely love in our hour together. During our meeting, he grew on me. By the end of our meeting, I can say he is my second most favorite person on Earth today. (Our OT is my first favorite person.) The doctor did some simple tests on Ben. Then he spoke to us about what he found with these preliminary tests. 

The doctor said Ben's eyes and brain struggle with tracking, processing, and convergence. So things like reading across a line of words is hard. Ben sees double at a point where his eyes should still be working together to see a single object. Something like copying from a board to paper is very hard. Spacial activities, like keeping space between the words you write, is difficult. Basically, there are significant problems!! I know, I shouldn't be ecstatic about this, but I am! There is something very wrong with the way Ben's brain and eyes work, and there are things we can do to help him!

I wanted to jump out of my seat and hug this man! Everything he said was what I've been watching Ben struggle with. Every time Ben said "I don't want to read" and I would read to him instead, I worried I was giving in to a petulant, spoiled demand. But something in my Mama Heart told me that this was what Ben needed, so I kept on advocating for him. Despite people thinking that I was just a pushover and my kid was lazy. I advocated for Ben to get audio books at school instead of having to slog through the written words. Alex and I read to Ben when necessary at home. Alex writes Ben's math homework out for him while Ben dictates, because Ben can't keep the numbers organized on the page. We just decided to believe that Ben was really struggling, because he said he was. And he was completely right!!! My heart just swelled as we sat in that office today. When we find a missing piece of the puzzle for our kids, I'm so happy. There is something wrong with Ben's eyes and brain. And it's something that we can make better for him! Through vision therapy and accommodations at school and in life! Can you even believe it? I'm so excited. 

The doctor explained to Ben that he is very smart, this isn't happening to him because he's not smart. It's just that his brain and eyes are having to work so so hard to do things that most people take for granted. And that is exhausting and frustrating. Life shouldn't have to be that way. There are things we can do to help him. Ben rocked back and forth in the big patient chair and beamed. The doctor also said several times that I really need to thank whoever sent us to see him. Whoever caught this, he said, deserves a BIG thank you. Thank you Laurie. Thank you. I will forever be thanking you for all the gifts you give our family.

We go back to this wonderful doctor in a few weeks for much more extensive testing to get more specific details about Ben's areas of weakness. Then we'll have a meeting for just Alex and me to talk with the doctor about his findings. The doctor will write a report and specify what accommodations he thinks will be helpful at school. And we'll start vision therapy.

So yes, our life just got a whole lot more complicated. I'm not sure how we're going to fit all of these new things into our already-packed lives, but we always make it work. We always just do what our kids need to have done. One step at a time. 

On the way home from the doctor, I had a long talk with Ben about what an incredible self-advocate he is. He kept telling me there was something wrong. And he was totally right! When the regular optometrist said Ben is fine, he wouldn't take that for an answer. I told him I was so proud of him, because he is very in tune with his body and knew that he needed help. This kid doesn't make stuff up. And I do see how if you don't REALLY know him, he could seem like the kind of kid to make up a whole bunch of tall tales. I understand, to some extent, why people at school have thought of Ben in negative terms in the past- "Lazy." "Manipulative." "Difficult." But if you know Ben, the real Ben, you know he is anything but those labels. He is intuitive. Kind. Beautiful. Wise. Hilarious. Gifted. Caring. And a great self-advocate. That's why I get so insanely pissed off when people don't see my boy the way I do. Because I know the way I see him is the truth. I know when he says "Yeah, that doctor said my eyes are fine, but they're not!!" that there is truth to that. He tells the truth. And I'm proud of him for that. He tells the truth even when the world tells him he's wrong.

Ella had OT this afternoon, and I talked with our incredible OT about my concerns for the other kids where their vision is concerned. We decided the other kiddos will all have special screenings next week done by the OT, to see if they may need to go see our new most favorite developmental eye doctor. I'm in the process of doing more research about all this, of course. And we'll know more after our next round of testing. But I have a feeling Jonah and Aidan probably have some of the same issues Ben does. So we'll see how many kiddos I end up needing to trek an hour away for vision therapy every week!

I can't even imagine how frustrating it must be to go through life being told that what you are struggling with is imaginary. What if we hadn't believed Ben? Think how much more difficult his life would be if we didn't get him this vision help. Think how frustrating and debilitating and overwhelming and self-esteem-crushing it would be to live in a world that didn't take you seriously, didn't believe that you are telling the truth when you say you're struggling. 

I'm patting myself on the back a teeny bit right now. I know that people who don't know me well think I'm a little kooky. Ok, people who know me well think that too, but hopefully they think that lovingly. Other people have told me I overreact to my kids' issues. That I'm making things up for attention. They "parent-blame" and say I'm the cause for my children's special issues. 

To them I say…whatev. You can think anything you want about me. I do not overreact. I advocate. And yes, there is a fine line between the two, but I walk it well. I have loved ones (aka my amazing husband) who reign me in when I'm freaking out and worried and sad and down about whatever a kiddo is going through. I have loved ones who boost me up and support me and pull me through tough times. Most of the time, I do not overreact. I advocate. I choose to believe my son when he says there is something wrong with his eyes. Even when the medical world (which can be intimidating) tells us he is fine. I choose to believe there is something more that must be done, because for reasons I sometimes don't understand, my son is suffering. And that is unacceptable as long as I have a breath in my body. I will not rest until I find ways to help my children to live comfortable, happy, healthy lives. 

People are often uncomfortable around advocating parents. We rock the boat. We shake things up. We demand change. We choose to believe our children when they say something is wrong. So whatev, doubters. There's no overreaction here. Only advocating. And look what it got us today- a solution for sweet Ben's eyes. 

As we left the doctor's office today, Ben and I did a happy dance in the hallway while we waited for the elevator. We did it. We knew we weren't crazy, and we solved a piece of the mysterious puzzle that is Ben. We jumped and hugged and laughed. From the outside, it must look a little loopy to be so happy when you just found out that your son has a significant  brain and eye problem. But my theory is always that my boy has this significant problem, whether I choose to believe it or not. Whether I have a name for it or not. And it's more maddening to not know what is making him suffer than to just figure it out and deal with it head on. There are always solutions to everything. Sometimes the solutions are a little bit outside of the realm of "normal,"  but I love abnormal solutions. I love thinking outside the box when it comes to helping my loveys.
I used to think that as the kids got older, I would have fewer mysteries to solve for them. But that hasn't been the case. The mysteries continue. I am officially Detective Mama. And I solved a big case today. Tonight I will relish a delicious slice of peace. Peace, knowing I believed my son. I listened to my son. I helped my son today.

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?