Wednesday, October 5, 2016
I’m sitting with Ella curled on my lap, her limbs shaking hot with fever. Her choked moans break through her soft snores, showing me how terrible she feels. I was just holding the cold metal Vomit Bowl for her as she threw up. Meanwhile, Alex is slogging through math homework in the other room with Aidan. Alex is infinitely patient, redirecting his boy, refocusing him repeatedly, re-teaching him the skills he missed during class today because his brain was focused somewhere else. And the two older boys are having a big hissy-fit-twin-brother-war upstairs. I hear things being thrown in my bedroom, crashing, accusing screams, swearing. In the midst of this familiar chaos, my phone dings with a text from my love, asking me what I want for dinner. This is how we communicate in the evenings- by text. Sad, right? But when there are four needy little beings and only two grown-ups to love on them, we’re spread thin and have to do what we have to do. So texting about dinner while I hold a vomitacious girl and two boys are probably bleeding from anger upstairs and one boy has no clue what the Distributive Property is…it’ll do.
Welcome to my Wednesday.
It’s been a very long day of advocating, chauffeuring kids from dawn until dusk, trying to get some work done…all the while not feeling well myself. It’s been an uber-stressful week, one where I feel my body ready to give out at any moment from the sheer mountain of stress I’ve been climbing the last few days. Any moment, my body will erupt into fever, or bust out a cold sore, or crash into migraine. My body breaks sometimes under the constant, unforgiving stress of living this particular life of mine.
As I carried Ella gently to her bed tonight, swaddled in a soft blanket because she is endlessly chilled from her fever, my weary heart smiled as I enter her room. There are glittery star sparkles all over her carpet. The stars are starting to sneak their way into the rest of the house now, I found one on the stairs on the way down, and one on my foot while sitting here writing. The remnants of the Tooth Fairy who visited Ella for the first time two nights ago. Ella, at LONG last, had her first visit from the Fairy. And she was overcome with joy. She woke in the morning to find the tiny fairy’s glittery footprints on her nightstand. Star glitter in a trail from the window sill all the way around her room to her bed. Under her pillow there was more glitter, a sparkly dollar bill, and a sweet little glitter lipstick wrapped with a pink ribbon. The Fairy had written Ella a special note on a teensy, fairy-sized pad of paper. Ella read the note in the morning with a hushed, awed voice. The Tooth Fairy said her tooth was beautiful, that she brushes her teeth so well, and that she loves Ella. Ella squealed with delight. She informed me we are never to vacuum her room again. She must have the glitter in her room at all times. Forever and ever. And the Tooth Fairy is the BEST. And she can’t BELIEVE she FINALLY lost her tooth! And she loves the Tooth Fairy. And the Tooth Fairy is the BEST. Pure magic, that girl. Pure joy and magic.
So I’m ok with the star glitter finding its way into other parts of the house, other parts of my life. When I watch one of my boys having a meltdown, the tiny pink star glinting on the floor reminds me this tough moment will be over soon and then we’ll be back to looking for magic.
The day started with an epic, albeit typical, meltdown on the way to bring Ben and Jonah to school. Someone had forgotten something at home that he felt was necessary to his mere survival, and Mean Mama wouldn’t turn the car around and bring him home to get it. Because then we would be late to school. And in reality, the forgotten item was not a necessity. So we soldiered on through the meltdown. Our meltdowns are farther apart and fewer these days. Ben is enthralled with high school. He loves almost every single thing about it. He has good grades, he is involved in everything and anything that comes his way, he thinks his teachers are kind and hilarious. He’s thriving. This happiness is carrying over to our home also. He is less angry. Less frustrated. Less irritated. Which means things tend to run a little more smoothly around here. Thank the sweet Lord in Heaven. I said to Ben the other day, “Can you believe that YOU are my child who is THRIVING in SCHOOL??? What?!? YOU, buddy!! I’m so proud of you!” He is proud of himself, which is heaps and heaps better than even Mama being proud of him. He went to the Homecoming dance with a group of friends. He went to a sleep over at a friend’s house afterwards and didn’t have anxiety!! Who is this kid? I feel like he’s finally finding his groove, finding his way in life. I said to Alex the other night that although Ben is almost solely responsible for his incredible transformation these past few months, we should pat ourselves on the back too. Because the biggest influence in a kid’s life is their parents. And wow, have we put our heads down and fought for Ben these past 14 years. We’ve fought hard. We’ve broken under the stress of the fight at times, but we kept digging and advocating and helping and supporting and loving, and we kept fighting for him. And just look at him right now. Unbelievable. There certainly is magic in this world, and its name is Ben. (With a teeny bit of help from Mama and Daddy.) Do I worry and wait for the other shoe to drop and things to take a dip back to the tough side? Yep. But I try to relegate that to the back of my heart. Stay back there, Worry. Just cherish these beautiful moments of success. Worry can wait. We may not even need Worry anymore. Or at least not right now.
Jonah is going to school for six out of eight periods a day this week! Amazing. He had his last tutor come to the house yesterday. Next week he’ll be back full time if everything goes according to plan. When I pick him up from school, he’s spent. He’s tired. But I can tell he’s proud of himself and feels a sense of accomplishment. He’s doing it. He’s kicking his Anxiety in the butt every morning at 5:45 and getting out of bed and doing what needs to be done. His medical issues are improving and he’s able to handle life better these days. His choir sang the National Anthem at the Homecoming football game last weekend. It was one of those moments where my Mama Heart was completely busting out of my chest. I was so. proud. of. my. boy. My little boy, standing out on the football field with his choir, making beautiful music. My boy, handling new experiences and handling them well. That’s my boy. That’s my beautiful, brave boy.
My beautiful, brave boy pops in the car when I pick him up, and I gingerly ask how his day was. I’m afraid to ask because I’m afraid of the answers. But I pretend to face this life boldly, so that my children don’t feel fear. So they are bold. Hopefully I fake it ok. I put up my Mama Shield and ask my boy how his day was, how his new classes that he added this week went. I hope I don’t crumple with my own tears at his answers. But he carries on, each day. He boldly puts one foot in front of the other and carries on.
Jonah didn’t go to the Homecoming dance, but did go to the sleepover at a friend’s house with Ben after the Homecoming dance. Jonah knows himself well, and knew he would be overwhelmed at the dance. I’m proud of him for knowing how to make himself happy. You find out quickly when you have twins that what makes one guy happy may not be right for the other guy. Even though they’re twins, they are two distinct people. The trick to parenting these two distinct people who were born on the same day, a mere four minutes apart, is to remember that it’s ok for them not to be exactly the same. It’s ok to be happy for Ben that he wants to go to a dance and happy for Jonah that he waited at home until the dance was over and then went to his friend’s house. It’s a hard lesson that I’m still working on, but I’m getting there. It takes practice to divide your heart into four little compartments for your four little people, and love unconditionally and enormously from each of those parts.
Aidan is a hot mess. But the good news is that he’s still Captain Oblivious, so he really doesn’t grasp the full extent to which he is floundering in school. That is truly a gift. It does register to him on some level that he is not succeeding with the ease that his peers do. He says things like he is stupid, dumb, he doesn’t know anything. Talk about tearing his Mama’s soul to shreds. The biggest problem is that Aidan’s brain just works differently than what a school typically expects. Aidan marches to his own drummer, and is a beautiful soul because of it. His weakness is that he is good. He is so good, down to his very bones. He wants to be good, he wants people to love and accept him, he wants to never do anything wrong or disappoint anyone. And when you’re a round peg and the world is trying to jam you into a square hole, things don’t exactly go smoothly. You start to realize that you don’t have the sharp edges the rest of the world has, that fit exactly into that square hole for so many other people. You begin to realize that your smooth sides and colorful exuberance for life are not what is valued. That’s a sad realization, and it’s one that can change your very existence if you sit and stew in that knowledge. I don’t want Aidan to be changed by the world’s expectations that he cannot meet because of his genetics and neurology. He is so beautifully him.
So advocating I am doing. On and on with the advocating. It’s so maddeningly difficult to get the world to understand the nuances of these invisible disabilities. There’s a diagram explaining Tourette Syndrome that likens it to an ice berg. Above the water, what is visible, are things like tics, lack of focus…things people can recognize. Hidden under the disguise of the water, the ice berg is a monster. It looms with all kinds of things that are hidden deep in the brain that are not available for people to easily see and understand. Things like sleep disorders, sensory issues, mood issues, anxiety, Obsessive Compulsive Disorder, learning disabilities…all of these things are smoldering around in one body, one brain. It’s incredible that people with special needs like these can function at all, let alone do so relatively well. It’s just extremely difficult to help people understand that the reason my son acts a certain way- like for instance always struggles with homework: bringing it home, doing it, turning it back in- that’s not because he’s not motivated to succeed. He desperately wants to succeed. Instead it’s that he doesn’t have the skills to succeed. He needs to be taught, in a different way from his peers, how to do those things. Many kids can pretty easily pick up on how to organize themselves in school. Other kids, like all of mine, need to be taught in a more purposeful manner.
We’re meeting with the school soon to “brainstorm” about ways to help Aidan succeed. I’m all for brainstorming. I’m willing and eager to do anything and everything on my end to help my kiddo. But, there’s a time for brainstorming and there’s a time for just storming. Storming the castle, taking no prisoners, making it happen and not just talking about it anymore. I feel like I’ve spent the past three years brainstorming on Aidan’s behalf, and we’ve made no real progress. And now I’ve witnessed what can happen when a gentle soul doesn’t get the help he needs in school, or gets it way too late. I’ve seen firsthand these past few months how that can cause a build-up of stress, anxiety, fear, and an inability to function. It can even bring on physical, medical issues. So as long as I’m alive and kicking, we will not be doing this again with another kid, where he falls into such an abyss that it takes months of extreme support in order to get him back into living Life. I’m willing to give brainstorming one last shot, but then I’m out. Brainstorming Time is done. We need some major action now before my little boy follows in his big brother’s difficult footsteps.
And then there’s little Miss Ella. We went to the play at the high school a couple weeks ago. It was “Peter and Wendy,” a take on Peter Pan. There were there actors that played the role of Peter, only one of which was a boy. During the play, Ella had to go potty. When we got into the bathroom, she held my hand and whispered, “I saw Peter! He was in the hallway! He smiled at YOU, not FAIR!” I laughed. After the play, the actors lined the hall and gave the audience high fives as they exited the auditorium. We got to the main doors to leave for the night, when Ella insisted that I take her all the way back to the auditorium so that she could give Peter a high five. It was so adorable, it melted my heart. But wait, it gets better. I found Peter. I picked Ella up because Peter was very tall and I knew Ella wanted to look him square in the eyes. I asked Peter if he would give Ella a high five. Of course, he smiled and gave her a high five, and took a moment to talk to her. As she looked at him, speechless with wonder, I swear, she blushed. It was the cutest thing I’ve ever seen. But wait, it gets better. On the way out to the car, Ella was positively giddy. She was gushing about the play, about her favorite Peter. She climbed in her carseat and I buckled her up. As we pulled out of the parking lot, Ella was holding her hand that touched Peter’s in front of her. She sighed and announced, “I am never, ever, ever washing this hand again. I’m not even going to ever SWIM with this hand again.” This girl. She is pure magic.
I took Ella to a friend’s birthday party last weekend. It was pretty far away, and on the way home she had to stop and go potty. I pulled into a gas station and we found the bathroom. Why do my children take SOOOOO LOOONG to go to the bathroom? They can’t even focus on doing that! So Ella is sitting on the pot, dawdling as usual. It was raining outside, we’d been at a pumpkin patch for a lovely- although soggy- party, we still had a ways to go to get home, we were down to one car because Alex’s was in the shop being fixed, I had to get groceries for the week, I had to make sure everyone got showered and finished their homework before bedtime…I was stressed. Impatiently, I urged Ella to hurry up. I told her desperately, “Please try to concentrate on going potty.” Ella put her head in her little hands and mumbled to herself, “Ok…don’t think about unicorns…” oh my gosh, I can’t even. This little piece of magical perfection. She spreads little pieces of starry glitter wherever she goes.