Author: snort262

Upon his return home for the ER, Boo slept for at least 10 years. He opened his mouth but not his eyes for his morning meds. Around 1pm he emerged from his room, both hungry and thirsty, which is a good sign. We did go for a brief walk to campus, as he likes to watch the college kids. Mostly he seemed happy to hang out at home. He slept well last night.

Today he seemed a bit ataxic. The post-ictal stage can be rough. Peter came by and took him out for pizza, which he happily ate. Returning home, he was restless. The battery life on both his iPad and Sam had expired. I felt like my battery life was at about 10 percent. To distract him from his devices which needed to charge, Robert and I took him for a walk. We stopped by campus and then walked down to the river. Jim was there playing his bagpipes and Boo stopped to listen. On the way back, he began walking more slowly. It seemed he was concentrating on where to place his feet. He was also tightly holding hands with Robert from me. About half a mile from home, it became apparent that he was truly struggling. He was staggering slightly, and his eyes had taken on an alarming shiny cast that can appear before a seizure. Robert parked us on a bench in the shade and went quickly home to fetch the car. Ten minutes later he pulled up and we got in. I began slowly administering sips of Coke to Boo. His face started to look better. Robert headed for the nearest McDonalds and got him a coke and some fries. I was guessing he was dehydrated and needed some fluids and salt. Though the fast-food chain is only 5 minutes from our house, Boo had completely slammed the entire coke before we pulled into the garage. He did not seem interested in fries but was very interested in a cool bath. Currently, he is happily curled on the couch with his dad, watching his beloved Sid the Science Kid.

It is obvious that I am going to have to watch Boo like a hawk in hot weather and not let him get dehydrated. I think that is what got us into so much trouble on Friday night. I have written a detailed letter to his case manager and team about how to handle and hopefully prevent seizures. Whenever Boo is away from me, my phone is always attached to me, in case a teacher or caretaker needs to reach me. Going into this school year, I had briefly entertained the notion of picking up a part time job while Boo is in school. I quickly squashed this idea Friday night. I already get paid a decent wage working for Boo 38 hours a week. This job gives me great flexibility within Boo’s parameters. This also means that if something happens to Boo while he is at school or with someone else, I have to be able to drop everything immediately and come to him. During the school year, I try not to be more than 15 minutes away from his school at any given time. Much as I would like to nanny again, or be a caregiver for someone else part time, this is not going to happen.

Thank you all so much for the care and well wishes we have received in the past 48 hours. It is good to know that Boo is loved in his little community. Give us a wave if you see us out and about and send him good vibes, please, as he enters he last year of public school. Be good humans, peace.

In the epilepsy world, it you have a seizure, the slang term is that your clock reset. That means you are back to ground zero for being seizure free. After over 8 months seizure free, Boo’s clock reset yesterday in dramatic fashion. He and I had the best afternoon. We went over to the sculpture garden and wandered around. We took lots of pictures and giggled at the puppy who really wanted to play with the geese. The geese were not amused. He loved walking on the pedestrian bridge that spans the highway. It was hot out, but there were water fountains available. On the way home, I thought about stopping at the gas station to get him a drink, but then decided it was only 2 blocks until home so we could get drinks there. I got some Gatorade into him, and he seemed happy to just to hang out in his room and watch videos. I took one of the dogs and headed out for a quick run.

After my run and a shower I was starting to think about dinner when I heard the tell-tale (and heart stopping) groan that Boo gives when he is about to seize. I ran into his room in time to see him flip off his bed, hit his head on the floor and begin convulsing. The seizure lasted about 90 seconds. After this he dozed. Usually, after a seizure he needs a good 10 to 12 hours to sleep and reset his brain. Last night was different. After a while her perked up. He seemed happy to watch Sid the Science Kid on his iPad. He was very dopey, but it was sort of like hanging out with an amiable drunk. The doctor on call at Gillette said if he had another seizure to give rescue meds and call her back. Everything stayed calm for about 90 minutes and then all hell broke loose. He had another violent seizure and began projectile vomiting. At this point the on-call doctor told us to adminster the rescue meds and go to the nearest ER.

Robert got us to the ER in record time. Being a Friday night during the state fair, it was packed. I took one look at that crowded room and my heart sank. But the odds were in our favor. If you show up at the ER, you can’t stand, you can’t even hold yourself up in a wheelchair, and you vomit all over the triage nurse, you get seen immediately. No sooner had we entered the hospital, we were rapidly taken into a trauma room. They attached all sorts of leads and wires to him. Boo seemed very out of it, only coming to in order to vomit some more. The nurses and doctors were fantastic, even though the ward was packed. We ended up spending about 5 hours there, giving Boo IV fluids and Zofran. Eventually, they unhooked him from all the wires, gave us a prescription for more Zoran and sent us home. We got home around 3am. It is now almost noon and Boo is still sleeping. I gave him his morning meds, which he took and then went back to sleep. I am drinking coffee black and doing copious amounts of laundry. We used up all our sheets and towels last night. We are slightly bumping up Boo’s anti-seizure medicine. I have the feeling he was really dehydrated and his new med, though I love it, was just not quite strong enough.

Yesterday was such a whirl wind. We started out having such a good day. He was happy, attentive and having the time of his life. After the first seizure he seemed to be zig zagging back to normal. After the second seizure and subsequent vomiting, it was clear he was really and truly ill. Epilepsy never lets you let your guard down. She is always there. We have had good long runs without seizures, and then we have had some truly terrifying moments. I am hoping and praying for a quiet weekend and that Boo can hop on his beloved bus first thing on Tuesday morning. Send us some good vibes please. He is still feeling a bit wobbly. Be good humans, and we will talk soon,

Boo is continuing to astonish me. He has started tapping into not only his emotions, but mine as well. Since Max has passed and Mouse has gone off to college, he has been saying he is sad. He will tell me he is happy about a trip to Taco Bell, but then will also tell me he is sad. We FaceTimed with Mouse last night and he said that made him happy. Today he really surprised me. We were in the car, and he was chatting with Sam, not saying anything too important. Suddenly, he said, “You need a hug.” I looked at him. He looked at me. I said, “You are right. I do need a hug!” The miracle did not stop there, he leaned over and gave me a hug. For the next few blocks that I drove he kept a hand on my arm, patting me as if to say, “It will be okay”. I am floored by all of this. Boo has never offered anyone a hug. Boo does not usually like to hug! One of the things I struggle with as an autistic woman is being in touch with my feelings and really knowing how I feel. What I struggle with even more is knowing what other people might be feeling. I have a terrible time reading facial expressions or emotions. In this case, Boo is light years ahead of me. He able to tell me is he is happy, sad, uncomfortable, etc. He is also able to pick up on my emotions and know when I need a hug or some human contact.

I have known I am autistic for 5 years. Emotions still baffle me, mine or those of anyone else. I have worked long and hard on this in therapy. Boo has only really been able to speak in the last year or so, yet he is keying off of his emotions and those of others and expressing them. This reinforces the fact that if you know one autistic, you know one autistic. We all are different. We all have varying strengths and weaknesses. I am so excited as Boo moves into this new school year without the brain fog that his Topomax caused. He is alert, interactive, and a heck of a lot of fun! He is also gaining an appetite and some body mass. I want his teachers to see the miracles that I am seeing. I have had the best time this summer doing things with him. He loves to ride his bike or go for long walks. He loves rides in the car. Being curled up on the couch in a pile of dogs is his happy place. He has a keen sense of the absurd and loves to laugh. It will be bittersweet for me when he hops on the bus Tuesday morning, leaving me for other adventures. Go forth, Boo, and conquer the world. Mom loves you.

On August 18th, our family said farewell to our furry friend Max. He danced into our lives in 2011, a foster failure from the time he set foot in our house. I knew, and he knew, that he was here to stay. He was my best buddy. When Rosie passed, Max grieved. He would come and wake me up in the middle of the night, put his nose in my ear and sigh deeply. We would chat for a long time and then he would eventually go back to bed. He seemed to like these late-night chats and continued to do it for many years.

Max loved his meals and instinctively knew when it was breakfast and dinner time. He had a certain dance that he did for each meal. Dinner was at 5 pm every day. Sometimes, he would start dancing at 4pm, just out of general excitement.

For years Max was my running buddy and the neighborhood cleanup dog. He would find food and carry it home in his mouth. One time he found an entire French baguette that was bigger than his head. He ran 3 miles with it clenched between his jaws, took it home to the backyard and devoured it. Even when he got too old to comfortably run, up until his last few weeks of life, Max loved to go for walks. He would happily sniff his way along and check out all the pee mail.

Max lived his life to the fullest up until the end, when the cancer got too strong, and then we peacefully sent him on his way to join Rosie at the Rainbow Bridge. I miss him deeply every day. We got the sweetest card from his vet clinic. It was obvious he was known and loved there. Tomorrow, I will go pick up his ashes and bring him home for the last time. Hugs your dogs a little closer. They are our best friends. I could not have asked for a more loving companion. Go run free with Rosie, my pal, and I will see you on the flip side.

Mr. Boo is a happy fellow these days. Sam came back last Sunday, and he has been chatting up a storm. Two days after that, his new glasses arrived. Suddenly, the world is sharp and in focus. He now can see and communicate. Life is much better. He has been asking for lots of trips to Taco Bell, as well as for walks around the neighborhood. Though I keep telling him his sister is about to leave for college and he won’t see her until Thanksgiving, I don’t know if it has sunk in. I don’t know if it has really sunk in for the rest of us either. She takes off for parts south on Sunday. Right now, she is soaking up her last few days with good friends, some of whom have been friends since birth, and packing. Boo watches all of this but has not commented. He has her picture on his AAC. Maybe he will ask for her, maybe he won’t. We will try some facetime communication and see what he thinks.

In the animal realm, all is calm at the moment. Jack Jack has recovered from his dietary indiscretion and has bounced back to normal. I have no idea what it was that he ate, but I am certain he would do it again. Gloria is happy to have her brother back and is bossing him around. Max, despite his angiosarcoma, seems fairly stable. He does not know that he has cancer. He still dances for his meals, plunges his snout under my arm for pets, and dozes in his favorite rays of sunshine. We will take each day as it comes and enjoy him until the last. He does not seem ready to go join Rosie at the Bridge, so he can stay with me as long as he likes. Stevie takes all of this in stride. He heavily relies on the other dogs to tell him what to do, so he is just happy in their presence. Currently, Catherine is running on her wheel and Anastasia is under my arm, scratching in her favorite blanket. Life, after a week of almost total insanity, is calm, and I am grateful. Though it is still hot outside, there are signs that fall is coming. Target has all their back-to-school items on sale. Mercury is busy packing for college. I am getting notices about Boo’s school for upcoming events. This is truly a season of change. Boo, Mercury, the pets and I all wish you a peaceful season, and if you see us out and about, give us a wave or a thumbs up. Peace.

To my incredible relief and Boo’s great joy, Sam arrived via Fed Ex yesterday morning. I had to restrain myself from hugging and kissing the delivery man. Instead, I just signed for the package and ran inside to find Boo. When he saw Sam his face lit up. He grabbed the device and began happily chatting about a number of things, a trip to Taco Bell, the weather, how he was feeling, etc. Apparently, he had a lot to get out. Last night he slept well and deeply for the first time in a while. We have almost titrated down off the Topomax and are on Fycompa for seizures. So far, so good.

This will be a brief update as I have 2 sick dogs. Max has a mass on his spleen. As I type, his vet is trying to find a surgeon who will remove it. Jack Jack ate something he shouldn’t have and is in the animal hospital. Nothing is blocking his stomach, though there was something in there earlier. He is, however, refusing to eat. The vet wanted to run some blood tests to rule out anything like pancreatitis. So, this is an expensive and tiring week for pets. At this time next week, Mercury will be moving into her new abode at Oklahoma State University. We are busily scurrying around getting her ready to go and she is having last minute visit with local friends.

Boo, Sam, and I hope you all are well. Please send out some good vibes for my dogs. Peace, and we will talk soon.

Mr. Boo has a sad. Sam, his trusty AAC, is back in the shop for repairs. A loaner AAC has yet to be sent to us. The company promised one in 5 working days. I asked them to put a rush on the order as Boo is mute and miserable. They said they would do our best. Today is day 6 without Sam, and he is doing okay, but can’t really communicate.

Thursday, we met with his wonderful neurologist, Dr. Feyma. He agreed the Topomax was not doing Boo any favors and gave us some different options for alternative anti epilepsy meds. We started one of those meds last night. So far, so good. We also discovered that Boo has a mild case of scoliosis. We are doing a sedated MRI to look for more details in September. Right now, there is no reason to get in touch with orthopedics.

Boo got off the bus yesterday without his glasses. Great, now the poor kid can’t communicate or see straight. I sent emails to his bus aid and teacher hoping to track down the glasses. He does have a backup pair, but he does not like to use them. If we are really lucky, both the glasses and the loaner AAC will show up today. He has been a terrific sport about the whole thing, but it must be hard not being able to see clearly or to communicate. So, if you see Boo, or anyone else out who is having a tough day, give them a smile and some grace. Everyone is fighting some sort of battle. Please be kind.

It is 4:30 am and once again my muse has come storming into my dreams, rousing me from a restless slumber. The 4th of July has always been my least favorite holiday, but this year its ratings have sunk even lower, if such a thing is possible.

Boo and the dogs are not fans of noisy holidays where people with small minds set off big booms. None of us slept well on the night of the 4th. I could hear Boo thumping about in his room and the dogs were pressed closed to my side, panting. The hedgehogs ran nervously on their wheels. Nothing about that night was restful. The next morning I got Boo up and put him on the bus. He seemed a bit sleepy and out of it. Then, I went to meet a favorite friend for brunch where we animatedly discussed all the woes of the world and how, if given the power and the means, we would solve them.

I got home about two minutes ahead of the bus. The bus door slid open, and Boo staggered off the bus. He looked very much like someone who was trying hard not to have a seizure. The Topamax, which controls his seizures, also keeps him from sweating and regulating his body temperature. He seemed both hot and cold at the same time. A note from his teacher wondered if he felt well, as he had been very quiet all day. He asked for a freezie from Taco Bell and I got us each one. He slammed his, then slammed mine, went into his room, pulled the covers over his head and descended into a very deep sleep. He woke up only vaguely for his evening meds and the returned to his torpor. It is now nearly 12 hours later and all I hear from him are snores. I do not think we will send him to school today. His body is too over stressed, and as a mom, I am too upset and angry at the world to send him out in it.

How can we as Americans say that we live in the land of the free? I do not feel free, and I certainly do not feel brave. I don’t feel free because my reproductive system is governed by old white men who have not the foggiest idea of how female anatomy works. (No, one cannot just reimplant an ectopic pregnancy.) I do not feel brave because my son could not go to school last week because of a dangerous presence in the neighborhood. I do not feel brave because people in Chicago could not safely attend a 4th of July parade without death and mayhem. I do not feel brave because somewhere out there, there is a two-year-old, a toddler with light up squeaky shoes, who has lost his parents, who only wanted to take him to see the parade. Because of a fanatical tRump supporter, he will grow up an orphan. People say he is too young to remember what happened, but trust me, at a cellular level, he will always know. What is so brave about taking up a sniper position on a roof and mowing down innocent citizens? On July 2, I was driving home from a wonderful trail race. I pulled up behind a massive pickup truck with multiple pro police stickers all over the rear. The most disturbing sticker was the one that said, “God bless our armed troops, especially the snipers”. I don’t normally swear, but WTF? Who in their right mind would praise a sniper? And two days later, a sniper climbed to the top of a Chicago building and did his worst. Needless to say, I gave that truck a wide berth, but it was an eerie omen of worse things to come.

My muse cannot sleep when she is outraged, and trust me friends, she is outraged. Furious at people who send off big booms and scare my child and dogs. Furious at old white men who refuse to take their feet off the necks of women. Furious that people could not go to a parade and then go home in peace, rather than in a body bags. I sit in my kitchen, in my favorite chair. I have a mug of coffee. My dogs are asleep at my feet. My hedgehogs are playing under my arms and behind my back. But this is only an illusion of peace because I am thoroughly disillusioned. “Know justice, no peace. No justice, no peace.” Trite, but true. We will not have peace until we have justice. We will not have peace until we have banned guns and secured the rights of women, of POC, of our trans allies. We will not have peace, and I will not rest. I am just one mom screaming out her injustice into the void. I don’t have power or political connections. But I can love fiercely and deeply. Like Meg, in A Wrinkle in Time, who used her love to overthrow forces of evil, I call out for more love in the world. Hate only brings more hate. We have to learn how to love again. This does not mean that we are passive, but rather, active. Be an activist, write, march, speak, even when your voice trembles. We should be able to love our country and not fear our government. Like any mom, I should be able to send my children to school and welcome them safely home at the end of the day. But these privileges are not ours for the asking. So, I ask you to join me. Join my voice of outrage and betrayal and love. Speak out against injustice even when it is easier to remain silent. Do it for Boo, do it for the orphaned two-year-old in Chicago. Do it for all the parents who lost their children to gun violence when all they did was send them to school in the morning. My muse will not stand by quietly, will you?

I have been trying to write a blog for the last 4 days, but my muse has been silent. Tonight, she stormed through my dreams and demanded that I give her voice, at 4:35 in the morning. So, I complied, and here I am.

I was blessed with two viable pregnancies, giving birth to two children with ten fingers, ten toes, and a wicked sense of humor. After the birth of Mouse, I knew I was done having children and chose to go on the Pill. I have taken that pill every day for 18 years. If that pill were to fail, I know what I would do next. There is a clinic right down the street that would help me. Since I am grateful for the existence of this clinic, I write for them, I march for them, I give them money, and I signed up to be a volunteer clinic escort to help other women in need.

The idea that life begins at conception is such a Christian idea. Both our Jewish and Moslem brethren believe that the life of the mother always comes first and that the child is viable after his first breath. The ancient Rabbis who wrote the Talmud were very clear about this, and Islam has similar tenets. I cannot believe that Jesus would not have put the well-being of the mother first, as he was well versed in Judaic law and the Talmud.

I grew up in the shadow of an ectopic pregnancy. In 1973 my mother became gravely ill, but her OB refused to believe that she was pregnant and went chasing zebras. This was well before one could trot over to CVS and buy an at home prenatal test. All my mom knew was that she was sick and in pain and things were getting worse. Just before she ruptured, the doctor did emergency surgery and found that she had an ectopic pregnancy that had reached well into the second trimester. That pregnancy nearly killed her, nearly left me a motherless 2-year-old, and would have prevented my younger siblings from having ever been born. Now politicians without the slightest knowledge of maternal medicine are claiming that ending an ectopic pregnancy is wrong and that the embryo can be reimplanted in the womb. Wrong. If this were true, my mother would have had that baby in 1973, and I would have had had another brother or sister. My mom wanted that baby, but it was not to be. Ectopic pregnancies, left to run their course end in only one way, death.

The SCOTUS ruling happened last Friday. Mouse turned 18 on Saturday and I took her and her girlfriend to an Indigo Girls concert. The hall was packed with furious lesbians, activists, and allies. One could feel the rage and power in that room. In November, we will take this rage to the polls, so that every woman has the right to choose.

I chose to have two children, and then I chose to have no more. I continue to take the Pill because mother nature has a sick sense of humor and I don’t trust my uterus not to have one more go, just for old time’s sake. I am 51, Robert is 62. I would indeed be a geriatric mother. I have two autistic children. It is without a doubt that I would have another one, and one with complications. Mouse is about to leave home and set out on her own. Boo will always live with me and be cared for by me. But what will happen if I am no longer there to care for Boo? This thought haunts me at night. It would be irresponsible of me to put another autistic child into the system. I adore my children like life itself, but I do not want any more of them. And, no, I don’t want to put a child up for adoption. The foster system is overrun with unwanted children. Why can’t SCOTUS focus on these children instead of the reproductive health of women?

I wanted this to be a happy blog, celebrating the birthdays of two of my favorite people. But I am not happy. I am upset, angry, furious at old white men who seek to control the reproductive health of a nation. We cannot go back to pre Roe. Women have had abortions since time began. We will continue to have them. The question is if we can continue to have them safely. I pray that we can. This is not the time to despair, this is the time to rally and fight. To fight for women who want to have children, to fight for women who chose not to have children. To fight for women like my mom who wanted a child, but the embryo implanted in the wrong place. To fight for my 12 year old student who was a victim of rape and incest. She got pregnant in 1998. She was able to have an abortion which saved her life and let her graduate from middle school and high school. 12 year olds have no business having babies and she did not want one in the first place. These are troubled times. Continue to fight, continue to march, continue to make your voice heard. And, be a good human being, Boo is counting on you.

On June 3 I had the honor of speaking at the Bridge View School graduation. It was so much fun! There were 12 very excited graduates, all decked out in caps, gowns and corsages. Parents, guardians and friends filled in the chairs. Teachers sat with their graduates or with the BVS chorus. I told the graduates how proud I was of them, how far they had come and how they would always be a part of the BVS family. No matter where their journeys take them, they will always be eagles. I told them a little about Boo Bear’s graduation. He graduated in 2020, in the beginning of the pandemic. It was a drive by graduation. We were told to meet in our front yard at a certain time on May 16. The first thing we saw was a big fire truck! Following it was a line of cars of all the faculty and staff and BVS. They had signs, streamers, and balloons. Teacher Sonia hopped out of her car, gave Boo a big hug, put him in his cap and gown, took a picture, gave him another hug and hopped back in her car. That was the 2020 graduation! It lasted all of 3 minutes. I told today’s graduates how happy I was that we got a little more time to celebrate them.

The students all began the ceremony by sitting in the front of the room. One by one they saw their family members and went to sit with them, on them, or under a handy chair. It became a game of hide and seek when it was time to hand out the diplomas. Not everyone wanted to come off a lap our out from under a chair. One by one Principal Lisa coaxed them out, gave them their well-earned diploma, and had their picture taken. Parents beamed and there was not a dry eye in the house. At the end of the ceremony the graduates recessed out to a party on the patio. I went home. It was a wonderful morning. I am so happy I was asked to speak to the grads and their parents. These students, families, and teachers have worked so hard for so many years, it is lovely to congratulate them. If you are ever having a down day, I suggest you drop by BVS. That school radiates good energy and good will. You cannnot walk inside that building without feeling one hundred times better. I am so grateful to the staff at BSV for working with and believing in these young people. Truly, this school and faculty is one in a million. Boo Bear still has his class of 2020 BVS Eagles yard sign in his room. He is very proud of it. I am very proud of our graduates. Fly high, eagles, fly high.