Thank you Elizabeth Aquino for doing this project. Your contribution about Sophie’s eyes gave me chills and made me cry.
About a year ago, I had the kids at the dentist and she recommended sealants for Seth’s teeth. I told her I’d look into them. So of course I did my research and learned that some sealants have Bisphenol-A (BPA) which is the stuff in plastic bottles we are told to avoid. You’ve heard of it, right? Don’t microwave cheap plastic and don’t drink out of plastic bottles left in a hot car, the plastic breaks down and leaches cancer causing materials, BPA….that’s the stuff.
I asked for literature on the kind of sealants she used. This dentist used the BPA-full sealants. So next time we were there, I asked her if she would order the BPA-free, and she said no. She said the ones she used are the best sealants. She wasn’t willing to change. Her tone was condescending. As if I was ridiculous to even worry about this.
“I use these on ALL my patients and no one ever has a problem.”
Not that you would notice short term.
“I would have to order in bulk and it wouldn’t be worth it just for your kids.”
She tried scare tactics.
“He’s got a lot of plaque and he will get cavities if you don’t do the sealants.”
I nodded politely, knowing I was willing to do sealants, just not the poisonous ones. I knew I wasn’t coming back, and we didn’t. I have not spent the last ten years getting the toxins out of my kids so some professional who hasn’t done their continuing ed can mess it all up. This dentist had already been walking on thin ice with me.
Earlier this week, Seth saw a new dentist. He too recommended sealants. I asked if they were BPA free, and he didn’t know. He looked at me curiously, but not condescendingly. He went and got a package insert, handed it to me. They were BPA-free! I was so happy. He was happy that I was happy.
Last night at porch night, the sealant issue came up. My friend Melinda’s kids go to the first dentist. And get this….she’s now using only BPA-free sealants! I of course handled this information with grace, practically shooting out of my porch chair and screaming,
I wonder if she got a lot of requests for BPA-free sealants? I wonder if it was just us giving her a hard time? I wonder if she did some research. I wonder what kind of arrogance makes professionals poo-poo parental concerns, rather than listen to them and learn from them? I wonder how many dollars her business lost over the long term from the loss of our two children as patients?
If her change-over to BPA-free had anything to do with us, I am happy.
I’m also happy we’re with the new dentist. Seth gets his new BPA-free sealants this morning. He’ll be protected from cavities. He won’t have BPA leaching into his mouth. All will be well with the world! Until 4PM, when we go back to have one of Riley’s teeth pulled. She’s got a stubborn baby tooth that won’t come out and it’s messing with her braces. She’s never had novocaine before. Pray for us.
Never a dull moment.
For the second day in a row, Riley has come home from school, finished her snack and got cracking on her homework. It’s as if she enjoys it. She’s so stoked to do it. She loves crossing all the things off the list. She loves telling me where I have to sign things. She’s just thriving on the structure and organization. The pacing at this school seems just right. She is happy.
I have not had time to mention a little story about her orientation the weekend before school started. She was so nervous walking in she couldn’t let go of my hand. We sat in the gym/auditorium and there was a speech by the principal and then the new students went off with kids who already attend the school(ambassadors) for a tour. Riley got up and went with her ambassador no problem. Then Riley came back, and took us to her class.
As we stood chatting with her new teachers, a girl and her parents came into the room. The girl looked like a flower at night, all closed in on herself. Eyes down. Shoudlers slumped forward. Riley saw her and bounced over,
“Hi! My name is Riley. I’m new here too.”
She waited a beat. The girl didn’t look up. She didn’t utter a word.
Riley said, “I can see you’re really nervous. I’m nervous too.”
Again, no outward response from the girl. She seemed so afraid.
Riley smiled at her and said, “I can see you’re overwhelmed, so I’m going to back off, but I look forward to being in class with you.”
The girls parents looked at us. The mother, appearing amazed asked, “Where do you live?”
You can’t even imagine how full my heart was, watching my girl navigate this exchange.
When we pulled her out of school two and a half years ago it was not well thought out. It was instinct. School had not been going well and she was beginning to internalize that she was the problem. On a gut level I knew she could always make up whatever academics she missed at home, but hearts are not easily repaired. We were protecting her heart.
In my parenting journey, I’ve never had the luxury of feeling like I know what I’m doing. Of knowing I’m a good mom. The task at hand has been daunting. There are no experts showing me the way. My kids are so different and you can’t measure anything against how anyone else is doing anything. But I feel like we did the right thing. I feel like we pulled her out at the right time, and we put her back in at the right time. She’s just started 7th grade and is attending a private school for kids with learning differences.
If you click on the glorious photo of Hot Toddy above, it takes you to a blog post three years ago when homework was a blood bath. Riley spent so much energy just surviving each day, she was exhausted at home. Homework that should have been simple took hours to complete. Her darling daddy sometimes resorted to the wig to make her laugh and snap her out of a meltdown.
I’ll never tire of the photo, but I’m happy to retire the wig.
Friday, the alarm woke me up and I stumbled into the bathroom. Riley was already in there, brushing her teeth. I grabbed my toothbrush and joined her, me in boxer shorts and a white t-shirt. She in her pj’s. She spit in the sink, looked up at us in the mirror for a long moment and said, “We look like zombies.”
It’s true. We did. Hair everywhere. Puffy faces. Especially me.
She came home from school happy, three days in a row. It was a getting to know you/getting to know the school time. Next week actual academics start. It’s been a wonderful re-entry into school for her thus far. She loves the organizational part of school. She likes her agenda, having me sign it, being responsible.
It’s strange for Jingle, Riley being at school. She greets her when she gets home tail wagging in big full circles, sniffing her up and down. She’s never had Riley leave by herself to go anywhere. Both kids went to camp, but Jingle didn’t greet her so wholeheartedly and thoroughly when they got home everyday from that. I wonder if she felt Riley was safely protected by Seth while at camp? I wonder if she just smells all the school smells. Jingle’s function is so different now than when we first got her. Riley rarely has a meltdown anymore. Still, it’s sweet to see them eat each other up when Riley walks through the door.
I got a book in the mail I can’t remember ordering. I don’t remember winning it. I don’t recall agreeing to review it? No note. It came straight from the publisher. Not from Amazon, or from an Amazon re-seller. It’s called Goodbye for Now by Laurie Frankel. It’s fiction. It’s cute so far. Any ideas why I have it here? Refresh my memory if I stumbled across it on someone else’s blog and sleep ordered it? Anyone?
Seth woke up with a sore throat last week and his tics are flaring right now. Yesterday we went to a doctor of Chinese medicine. He’s got poor Seth drinking nasty tasting tea twice a day, and ingesting another awful tasting powder we mix in honey. I ordered blank gelatin capsules to at least spare him that part but they aren’t here yet. I’m having to be firm, or Seth will whine for an hour before taking it. Seth sat on my lap in the doctor’s tiny office. The doctor listened to Seth’s lungs and looked in his throat and up his nose and while he did this I closed my eyes and silently blessed this man, as he endeavored to help our boy.
Few things as glorious as long leisurely conversations with girlfriends. I had two this week. Lucky lucky me.
Todd and I start spooned, I get too hot and flip on my side facing him. He takes my hand and I pull his hand to my lips and kiss it. He pulls mine to his lips and kisses it. Often enough, we fall asleep holding hands, facing each other. If you looked at it from an aerial view it’d seem we’re about to arm wrestle in our dreams.
She knelt before me, placing her hands on my feet. She was giving me Reiki, a free service offered to anyone who decides to plunk down in a chair in the back of the church service and receive it. I looked into her eyes and saw such love. She was my mom’s age. Maybe a little younger. Maybe a little older? She was black.
What racism had she faced in her lifetime? How many countless displays had there been?
And she bowed before me and offered her healing and her heart, with dignity and with grace and with compassion for me, this white girl who needed a little energy work.
Slavery existed such a short time ago. Segregation was a thing of my parents’ generation. Four little girls killed in a church bombing just a few years before I was born. Daddies lynched. Crosses in yards. Cowards in hoods.
As the election draws nearer, I see racist comments and cartoons posted on Facebook directed against our president. Not political commentary, but hate. Racist hate. My heart hardens. I want to punch back. It’s my nature to react. The other side, my side, gleefully bashes his opponent, drunk with drama about what happens if God forbid he’s elected, rather than focusing on the good our president has done and what they appreciate about him and what they look forward to in the next four years. Rather than pumping Obama up, and getting him re-elected, they focus on the other guy, making him stronger. People think they are so smart with their political repartee. Getting off on tearing down those who have different views from you shows your smallness, shows how controlled you are by your ego. Intellectual wit is not true Intelligence. You can be witty as hell and still have a very un-evolved heart.
I want to react.
Instead I sit with my nine year old son, and watch Martin Luther King Junior declare his dream.
I think about people who were hosed down, and beaten by police, and who marched and who didn’t give up and who met hatred with non-violence. Dr. King told them not to strike back and they didn’t. He told them to love. Strength in non-violence. They were strong.
If they could do that, I can refrain from sending hateful retorts back on Facebook. Surely I can.
I will. I will refrain from commenting until I can do it from a Higher ground. I will teach my children, touching lightly on you and your hatred in the lesson plan, but I will focus on non-violence and the miracle that black people in this country are kind and good and forgiving despite the horrors of their recent history. Despite the blatant racism that continues to surround them today.
But don’t for a moment take my temporary non-response as agreement. And please, don’t for a second think you are a good “Christian” as you fling your racist hate.
Don’t for a moment think your kind isn’t a dying breed. Y’all are on your way out.
And to Obama supporters? A new day already dawned in 2008.
Why don’t we focus on that?
“Darkness cannot drive out darkness: only light can do that. Hate cannot drive out hate: only love can do that.”
-Martin Luther King Jr.
Riley went to school today. She started 7th grade at a small private school designed for kids with high functioning autism. She has a dream of going to high school (she thinks it will be like Glee), and in order for her to go to high school we all agree that she should get back in the game of a structured school setting for middle school.
We think she is ready. We hope we’re right.
Seth is staying home one more year for health reasons. We think sending him to school is like dipping him in a strep cocktail. And as if to give me some sort of validation, he woke yesterday with a very sore throat. We will continue to work on boosting his immune system this year. As much as I would prefer both kids be in school, I am really jazzed about having a year of one-on-one with the boy whose issues have often played second fiddle to more pressing concerns. I know I won’t regret taking this time with him. It will be strange for these two kiddos to be apart so many hours per day. I think it will be good for them though.
Seth and I have had a lovely day, even though his throat is sore. We got groceries. Went to the library. Started a new “boy” heavy book series Artemis Fowl. Walked the Chihuahua. He did an art project. He’s already showered. I rubbed his feet. Later he’ll do math with his dad.
We have had a very challenging August. I have a zillion things vying for attention in my brain to write about. They’ll show up here, bit by bit, as I get back into the swing of things.
Right now, Todd will be on his way to pick Riley up at school on his drive home from work. I am cautiously optimistic. I know if it doesn’t work out, it isn’t the end of the world. I didn’t know that when she was three. I didn’t know that when she was 10.
Right now I’m watching the clock. Waiting. Hoping she’s smiling when she walks in the door. Hoping what we all hope, that our children will thrive.
* Update. She came through the door. Seth said, “How was school?” She said, “Awesome!”
Riley and her Gramma went for pedis today. It was my mother’s first pedicure ever. Riley had a male technician, and during the pedi she starting leaning over toward my mother saying, “This is inappropriate.” My mom thought maybe she was talking about the foot massage, etc.
It was the TV. The news about Rep. Todd Akin’s asinine views on rape/pregnancy was droning on and on. Riley didn’t really understand it, but kept hearing the word rape thrown around, and frankly, it was messing with her relaxed vibrating-chair pedi mojo. She spoke up and insisted that the salon change the channel! And they did. Twice. Because the second channel they went to was “inappropriate” too.
Another day soon I’ll explain the whole thing to her, the significance of this news story.
For today I am thrilled that she advocated for herself. Something was making her uncomfortable, and she spoke up to a bunch of adults and asked them to make an adjustment.
Mama couldn’t be more proud.
My mother is coming to visit today. I pick her up at the airport this afternoon. She will be here for five days. Riley and Seth are excited. They don’t really know her much, and truly, she only knows them from my blog. She’s only seen them a few times in their lives. I think she hasn’t really known if I wanted her in my life or what her place should be.
She had decided not to read my book, she didn’t want to go back to re-visit that time in our lives. I was fine with that because then I didn’t have to deal with her reaction to it. But in May she did read it. And she called my sister and her first words were, “It’s all true.”
That created an opening in me.
She supported me during the writing of it. She somehow knew it was therapeutic for me, and even if she didn’t come off smelling like a rose, she felt it was something I needed to do and she supported me. But to read it, and take it all in, and then validate it like that, I think shows courage.
I asked her to come this first time without her husband. I think we just need time to connect. Time to really sink into knowing each other without having to worry about or even consider anyone else. Todd will have my crew under control. I appreciate her husband understanding.
I want to meet each other where we are right now.
May our highest selves show up for this reunion. May we let go of old wounds and notions and ideas which no longer serve us. May it be a very good visit.
I know I usually write nice things about Hot Toddy, and generally he’s a great guy. But we’ve been married almost 15 years and it isn’t always perfect. There is one thing I have endured all this time, day after day, year after year. It is something that would drive many a woman mad.
At any meal, if there is a request to “pass the salt,” or if he is in the kitchen on his way to the table and I ask him to bring the salt, or if I say, “Seth might need salt on his chicken,” it happens.
Some sort of loop in HT’s brain won’t let him handle, think about, taste or deliver salt, without saying, “Salt & Pepa…!” in the same inflection you will find around the 40-50 second mark of the song Push It.
I thought you should know what I go through.
Thank you for your thoughts and prayers.
For Riley, who’s secretly been reading my blog on her iPod. And who sometimes feels sad that she can’t swim as well as other kids her age. And who sometimes wishes she never had autism.
I love you. You are perfect.
I have never seen Todd sick like he was on Friday. He looked frail and small. He is stoic. He never gets sick. After eight days of being sick, he agreed to go to the ER, and when he agreed to go, my heart sank. For him to agree, it had to be bad. Todd was in the ER for seven hours Friday before being admitted to a room.
The doctor in the ER seemed nice but after running tests he came in and said Todd’s liver enzymes were elevated and casually called it “Hepatitis.” Later he would mention that hepatitis is just a technical name for inflammation of the liver and could be for any number of reasons, but it was kind of a jackass thing to say because to most people Hepatitis means something entirely different and super scary. It’s not a term to throw around lightly. Todd’s grandfather died of liver cancer and I saw fear in Todd’s eyes as soon as his liver was mentioned.
They hung one bag of IV fluid in the ER but not another one for the next six hours. He’d had near constant diarrhea for over a week and had been vomiting too. He needed fluids.
At home, I’d left Riley in charge, and I ended up being gone for four hours. When I got back I found she had sequestered herself in her bedroom and obsessively worked on her animation films, so Seth was basically alone for four hours by himself. She came out of her room bleary eyed, since no one had forced her to take a break. She hadn’t even checked on her brother. Later I would learn she’d been coping the best she could, diving into her area of interest, but it appeared she was just oblivious.
I fed them dinner, and my friend Kirsten took the kids for a couple of hours so I could go back to the hospital.
When Todd finally got admitted to his room (seven hours in) the nurse rolled in her computer. Asked a bunch of questions and typed in his responses. She took his pulse for ten seconds. Listened to his heart for maybe ten seconds. Sent an aide in to do his vitals. The RN did not spend any time actually looking at him. Her focus was on her computer. She didn’t note his pallor. She wasn’t present. Todd never complains. How could I trust him to be cared for there? But I needed to get home.
The next day, Saturday, I could not go see Todd in the hospital because Seth had fallen ill. I feared he had come down with the same thing Todd had, and it scared me because he is so vulnerable with his PANDAS/autoimmune deficiency and he’s just 60 pounds. He can’t afford to lose fluid like Todd was losing it. By Saturday evening Seth was throwing up and had liquid diarrhea. Todd was in the hospital and no one was giving us any explanation as to what was wrong with him. I was near panic. I ran to CVS to get some supplies for Seth and was in tears in the check out line because it was going slow and my baby was sick, and the kids were home by themselves. It took less than ten minutes, but it wasn’t right. I felt so very scared and alone.
Later that night, I went into the basement to put some of Seth’s soiled clothes in the laundry and heard Riley crying. Where was she? Surely not down there, in the dank spider filled cellar that is only for laundry and kitty litter boxes and storage?
She was sitting in the dark, hands in her face, sobbing. I didn’t have time for this, Seth was two stories up, puking.
“I’m so scared! What if you get sick next and I have to take care of everyone? I don’t know what to do! I don’t know what to do! Dad’s in the hospital and Seth is so sick! I don’t know what to do!”
I could hear Seth retching, sound traveling down the laundry shoot.
I dragged her by the hand with me up the flights of stairs, reassuring her I wasn’t going to get sick(I hoped). Daddy was fine, he was being well taken care of(even though I questioned that). She was too far gone to wash her face and I had to do that and brush her teeth for her. I popped a melatonin in her mouth, stuck her in her bed, shut her door and faced the night with Seth. I got teary on the phone with Todd, and then kicked myself for it. He felt helpless enough as it was. Last thing he needed was to worry about us at home.
Seth slept in my bed and pooped himself twice in his sleep before he could make it to the bathroom. We were up all night. I had the bag packed and hourly weighed the decision to take him to the ER too. My only solace was if this was a stomach bug, it wasn’t something like liver cancer for Todd. Liver cancer isn’t contagious.
Riley woke fresh as a daisy at 7AM Sunday and allowed the dogs to tramp into the bedroom waking us up, when we’d had about two hours of sleep. She didn’t mean to wake us, but didn’t mean not to. She didn’t think to make them come downstairs with her. It’s never malicious with her.
Todd came home late Sunday afternoon. The antibiotics worked. His liver enzymes are down. He does not have hepatitis. It appears to have been some sort of bacterial intestinal bug. Seth seems to be clearing whatever it was, aided by my own vigilant application of non-FDA approved bug fighting remedies at home.
Monday by coincidence the kids had physicals with a new pediatrician. Riley needed the forms for school. I dreaded the appt. because I dreaded the vaccine interrogation. This doctor started in about them, warning me that if a measles outbreak happened the school could kick Riley out for a whole year, but otherwise backed off respectfully. He also shared an anecdote about one of his patients with PANDAS who was getting IVIG at another practice. A lot of immunologists use vaccines to determine whether the IVIG is working. They give IVIG, then give the pneumovax vaccine and measure the body’s response to it. And this doc said one PANDAS patient he knows personally had a severe reaction to the vaccine they gave to measure the IVIG effectiveness and has regressed and never recovered. He actually admitted that to me. Which speaks to an open mind at least.
We would never agree to that kind of vaccine/response experiment with Seth, we know too much, but it is standard practice for most immunologists. They just truly believe that vaccines are 100% benign. They can’t even use common sense to fathom how injecting something into an already weak immune system might wreak havoc on it.
The thought of this patient with PANDAS, getting that vaccine and having a reaction to it, which he never recovered from, made me ill. That poor child. Those poor parents. Heap it onto the last two weeks I’ve had and I was done for. I feel PTSD hyper-viligance about the health of my family. I’m feeling angry at mainstream medicine. I’m questioning how a society can be so asleep and keep allowing its children to be hurt. I’m kind of reaching around for it but appear to have misplaced my faith.
Sunday, after picking Todd up at the hospital, I took a nap with Seth for over two hours. It’s the first snuggled-up nap we’ve had together since he was a toddler. He doesn’t usually slow down enough for that kind of thing. I ran my fingers through his thick blond hair. I studied his hands, still so small, his fingernails. His cheeks. I laid my head on his back and listened to him breathe. I thanked God for him, and hoped, hoped, hoped he was over this illness.
Monday except for the doctor appt. we all just laid around, except for Riley who worked on her films in her room.
Today it appears whatever hit my boys is on its way out. Seth is still weak and nauseous and nothing tastes good, but no vomiting or diarrhea today. Same for Todd. They appear to be on the mend.
I am exhausted.
Thank you to friends Betsy, Anna, Kirsten, Ruth, my mom, my sister, Todd’s parents, his brother, who checked in with us to see how we were doing. Thanks to all the people who emailed and or/left comments here and on FB and to all the people who didn’t leave comments but who wished us well or sent out a prayer for us. One woman I barely know has taken me under her angel wing. I’ll introduce you to her in another post. Carrie Link talked me straight off the ledge lighting candles left and right all the way in Portland, Oregon. Just the fact that she was “worried sick” kind of took some of the burden from me, let me breathe a bit.
Right now my little family is okay.
Sorry this post is so disjointed. It’s going to have to do.
Thank you for your thoughts and prayers.
My darling has been feeling very sick for the last ten days. He’s in the hospital and they are trying to figure it out.
I’d like to lasso Infinite love and beam it into Todd’s hospital room. Surround him in light healing energy. Make him feel better. He is so stoic. He is feeling so sick and tired.
Right this minute we are okay. We are safe. He is being cared for. We have health insurance and aren’t worrying about hospital bills. We have food to eat. We have a roof over our heads. We are okay. We are held. We are loved. We are lucky to live where we do and have access to health care.
He is okay. We’ll figure it out.
Please keep him in your thoughts and prayers.