Wednesday, November 4, 2015

Broken Angel Wings

Our Halloween went just as expected- typical and amusing. After all the prep to get Ella's costume, makeup, and hair just right, Alex was out trick or treating with Ella and Aidan for about 7 minutes before he texted me and said Ella had decided to take her witch costume off. Fabulous. About 9 minutes after that, the threesome came home- Aidan was done. He was over trick or treating. It was tiring and soggy and he didn't care that he didn't have much candy in his limp pillow case. Ella tried to go back out with friends but her anxiety got the best of her and she came right home.

Before he went to do Big Guy Things, Ben sat on the front porch, candy bowl in lap, waiting for tiny treaters. After a long time without any treaters, I said "Ben! Where are all the trick or treaters?" He replied "Probably at better houses than ours. I mean, we're handing out TATTOOS, Mom." What's wrong with that? Tattoos are allergy-friendly! There were also spider rings, pencils, and candy in the bowl. But Ben did not like my choice of Halloween offerings. 

Ben and Jonah got to go to a Halloween party and trick or treat with their Big Guy Friends. Jonah called about an hour before I was supposed to pick the boys up from their party. I thought here we go, they want to come home early because of anxiety. But NO! They wanted to stay a half hour longer! Woohoo! I didn't care how late they got home, because they were asking to do something away from home for longer. That was big. So I said yes. And then regretted my sleep deprivation the next morning.

When the boys got home from their party, they commenced the Annual Candy Swap. They all get out their candy and divide it up: Jonah and Aidan's piles- without nuts, Mom's pile- all candy that contains peanut butter, Ben and Ella's piles- anything and everything that has sugar in it, and Dad's pile- whatever is left over. Ben yelled at me for "scavenging" in his pile for peanut butter candy. I patiently explained the rule: Since I grew him in my body for 29 weeks, and he has given me many many gray hairs since then, he is required to hand over almost all his peanut butter candy to me. He claimed temporary insanity and forked over the Reese's.

We made it through yet another Halloween without too many problems. Good times.

Want to hear about something totally magical? I took all the kids to see our developmental optometrist for a check up. The doctor checked to see how the kids' special glasses are moving their brains closer to functioning more effectively. She said Ben needs a different lens for his left eye to balance his eyes out. Aidan needs totally different lenses. She said the first pair he's had are called a wedge. Because Aidan's brain and body were so tense, she used this wedge lens to crack open the door to his brain and let a little relaxation in, in the form of these lenses that help Aidan process the world better. Now his brain is much more relaxed when it comes to visual processing, so now the doctor can put different lenses on him that his brain will accept and learn from! Crazy. 

After working with Jonah for a bit, the doctor stood back and announced that for Jonah, the problem is processing. She asked him to tell her four words that start with the sound "g." He said "The letter g?" She said no, the sound "g." He struggled but found four words. Then she asked Jonah to tell her four words that start with the letter "k." For the life of him, he couldn't do it. He sat there for about 10 minutes, silent, giggling because he was embarrassed that he couldn't think of any words. He finally did come up with some. The doctor said what will help Jonah is vision therapy that addresses processing. And luckily, the clinic is setting up virtual therapy that Jonah can do at home on the computer! So we don't have to squeeze any other appointments into our already-crammed schedule. Hurray for Mama!

Next Miss Ella got in the doctor's chair. She pulled her legs up into "crisscross" position. The doctor did some tests on her. Ella did perfect. Then the doctor asked her to uncross her legs and sit like she has to at school. Ella failed all the tests the doctor gave her-- the SAME tests she had just aced!! I was floored. I love this magical doctor. She is pure magic. She said Ella's problem is not her eyeballs, it's her muscles and reflexes. She needs reflex integration therapy, and after that may not even need her glasses at all. What?!? Seriously? Crazy. I told the doctor that Ben and Jonah are both doing reflex integration therapy- MNRI. The doctor personally knows the doctor who 'invented' MNRI, so she said that is exactly what Ella needs also. The doctor said that the testing she does with people's brains, nervous systems, bodies, etc, is only being done by her and a handful of doctors in Europe. I just can't ever understand this. Why, when a therapy or solution is so obviously valid and true and helpful, why don't more doctors do it? Why doesn't insurance cover it? It's ridiculous. 

So we've added Ella to the MNRI group. She's getting OT twice a week now, as well as counseling, speech, and PT. Ben and Jonah get OT once a week. Aidan gets counseling and speech. Ella and Ben get their orthotics tomorrow. Jonah and Aidan go in a couple weeks for their orthotic appointment. We see the psychiatrist next week to talk about three of the kids' meds. Sometimes I feel like I need to stop and catch my breath, but there's no time! There's only more appointments!

Speaking of my littlest angel, I don't know what about this life has broken her beautiful, iridescent angel wings. She is wracked with Anxiety again. She's falling apart. It may have gotten worse because of the dog bite she suffered a couple weeks ago, but regardless of the 'why,' it's all-consuming. She sobs when she has to go to school. She worries and protests if she has to go in to therapies by herself. Her dance teacher has made an exception for me to sit in the classroom so that Ella will actually agree to dance. She is back to sleeping as close to me as she can physically get every night. My poor angel. I don't know how to cure Anxiety. If I did, many of my children would feel a whole lot better. It breaks my heart that I don't know how to fix this for them. 

The other night, Ella was crying about going to school the next day. Finally, she said "I'm weird." I asked why she said that. She explained that no one else in her class cries because they miss their moms, and she does, so she is weird. Dagger to my already-fragile Mama Heart. Sometimes I just want to gather my child tenderly in my arms and cry with them and not ever let go. Why isn't that a Thing that Mama's can do? 

Sorry, I know you're 47 years old, kid, but I'm not ever letting go of you. 

We talked about how lots of kids feel like Ella does, some just don't cry at school because they can hold it in. Ella said she's weird because if I leave her at a friend's house to run an errand, she cries there too. I told her that it's ok to be sad when you miss your Mama. It's ok to cry. But it's also ok to be ok, and have fun when you're not with your Mama. I told her how lots of kids have this problem of being sad when they're not with their Mama. In fact, look how many of those kids live right in our house! Even her big brothers sometimes have to go to their school nurse and call me to come and get them because their Anxiety is too close that day.

My pep talk didn't help her feel better. But I tried. I ended up just tenderly gathering her in my arms and letting her weep until my shirt was drenched and she fell asleep. 

It's as hard for me to peel my baby off of me and put her onto the bus as it is for her to walk up those bus steps. Kids should never know how hard life feels to their parents. 

Ella's teacher emailed me that Ella was just laughing hysterically about something in the classroom, so at least she's having moments of joy today. I'm trying to have moments of joy too. The weather is not helping- all gray and morose. Ben stepped out of the house today to go to the bus stop and asked "Why is it so blurry out here?" I said it's called fog, kid. He cracks me up.

I guess today is a day where we just keep putting one foot in front of another and get through it. Maybe someday I'll find The Fix for all those broken beautiful angel wings my babies have.

1 comment:

Full Spectrum Mama said...

I've been re-defining WEIRD for years! You tell your beautiful angel gal that weird has it's beautiful side!!!
Thanks for the dear post and candy swap tips ;)