The Visitor

We encourage our kids to have friends over. It’s pretty common for there to be an extra kid or two hanging out for a few hours or spending the night. That’s why I didn’t think much of it when Mike brought a new friend home last Thursday after school.

“Mom, this is my friend, Darius. Do you mind if we go downstairs and play video games for a while?” Mike asked.

“Sure, sweetheart. Go ahead,” I replied, then I went back to making dinner.

About an hour later, Mike came upstairs and told me that Darius was going to need a ride home. I thought that was strange, but sometimes Mike offers our help without checking with us first, so I didn’t think too much of it. I told Mike that we were busy then but someone could take Darius home after we were done with dinner. Darius texted his mother and let us know that she was ok with that. Later that evening, my husband drove the boys over to the apartment complex where Darius lives. When they got there, Darius noticed that his Mother’s car was not there. He texted her again and she replied that she had to leave and wanted to know if he could just spend the night at our house because he couldn’t get in his apartment. We thought that was weird, but we weren’t about to leave the boy alone in the parking lot, so he came back to our house and spent the night.

On Friday morning before school, I pulled Darius aside and tried to get some more information about his home life. Mr. M and I had an uneasy feeling about the whole situation. As foster parents, we are required to report suspected abuse, but I refuse to make that call unless I am fairly certain abuse is actually happening. My gut told me that Darius was not being truthful, but I couldn’t tell what the truth was.  Darius assured me that his mother would be picking him up later that day, then he and Mike left for school.

Friday was a busy day in our town. It was homecoming week, and there were events all day long. I was busy taking care of My Littles and My Middles. Lu was not feeling well, and she was taking a lot of my attention. My Bigs and my Olders (whom I still need to write a post about) were all busy doing other things, so my day was completely consumed with caring for my family. Late in the afternoon, in the midst of the chaos, I noticed that Darius’s backpack was in the kitchen.

A while later, Darius walked into the house with Mike. I asked him why he was here and not home.  He explained that he was hanging out between homecoming activities and that he and Mike would be leaving for the parade and football game in a little while. His mother would be picking him up after the game. That seemed reasonable to me, so I wished him well and went back to my day.

The rest of the evening was busy but typical, that is until bedtime. I was exhausted, but I waited for Mike to get home before climbing the stairs and heading to my bed. When Mike came home, he was not alone. Darius was with him. I looked at them both in utter amazement. Darius stammered. He explained that his mom never came to pick him up and when he texted her, she had told him that she had gone to work. He sheepishly asked if he could spend one more night, insisting that his mother would pick him up here when she got off work the next day. I shrugged and told him, “That’s fine, but when she picks you up tomorrow, I am going to talk to her.” Then I went to bed.

The next morning, I woke up refreshed and determined to get to the bottom of our strange visitor’s story. I assumed he had been lying, but I was hoping to get a glimmer of the truth. I still was not sure if a call to protective services was warranted. I questioned Darius several times that day. I watched closely for signs of trauma and abuse. I repeatedly asked him what time his mother would be coming to get him, reminding him that I was determined to speak with her when she came. I had already asked for all of her contact information, but Darius was being less than helpful.

As the day wore on and the time came closer to when we were finally going to get to meet Darius’s mom, his story suddenly changed. Apparently, Darius’s mom had messaged him and needed him to be dropped off at the mall. I looked Darius in the eye and firmly explained that I would not allow that. He was not leaving my home until I met his mother. Darius squirmed. He stammered and came up with a lame excuse as to why he needed to be at the mall. I gave him another chance to be truthful, but got nowhere. I left Darius playing video games with Mike and went upstairs. Mr. M and I discussed all of the details and decided that since we really had no evidence of abuse, I would call the police. The police could take it from there.

Not long after my call to the station, an officer arrived at our home. (I really need to bake our local officers cookies or something. It seems like they are out here to help us out quite a bit.) We called Darius upstairs. He seemed shocked to see an officer there waiting for him. Darius started with some of the same stories that he had given us. The officer had him collect his things and get in the cruiser. They were going to drive around until they found Darius’s mom. As they left, I breathed a sigh of relief.

In the mean time, we had found a Facebook account that we were pretty certain belonged to Darius’s mother. We sent her a request. She responded the next day and asked why the police had been involved. I explained what had happened on our side. She explained her side, sending copies of the messages between herself and Darius. He had refused to go with her after school on Thursday and had gone to the basketball court instead. That is where he met Mike.  Once he came to our house he decided he was going to stay here as long as he could. No one knows why. Some mysteries are never solved.

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Jimmy & Boris the Tortoise

Jimmy loves Boris.

Jimmy loves Boris.

If you came over to visit, you would notice that we have a lot of pets. I would totally buy a zoo if my husband would let me. For now, I am content begging him to buy me a farm – – just a little one. And of course, it would have to have a kennel and pond for our goldens. And I have to have chickens, maybe some goats, a dairy cow would be nice. But I digress.

Among our pets, we have a bale of turtles and a tortoise. Jimmy loves our tortoise. My guess is that if Jimmy had to pick his favorite animal, he wouldn’t have to think long before he answered with “Boris!”

Boris, our Russian Tortoise.

Boris, our Russian Tortoise.

It is not unusual for me to remind Jimmy that he needs to leave Boris and his tank alone. Several times a day, I find Jimmy staring into Boris’s habitat, talking to him and telling him all sorts of important stories, most of which I can’t understand. But Boris and Jimmy have a relationship. They are friends, and who am I to keep a boy separated from his tortoise pal? Though I do remove the toys and other paraphernalia that Jimmy sneaks into the tank on an almost daily basis.

A friendship like theirs does have its challenges — mostly for me, though Jimmy would insist that I just don’t understand. Last weekend I wrote down some of the things I actually said during a Jimmy and Boris play date.

Boris is our resident vegetarian, which is good because at least someone here will eat their veggies.

Boris is our resident vegetarian, which is good because at least someone here will eat some veggies.

“No! Don’t lick Boris! Oh, yuck!”

“No! Don’t write on Boris!” I don’t even know where the pen came from. I don’t think I looked away for a second.

“No! Don’t kiss Boris. Oh gross. Ok, whatever, kiss him, I’ll take a picture.”

“No! Don’t take Boris’s grapes, those are his grapes.”

“No! Don’t eat Boris’s lettuce, you don’t even like lettuce!”

“Put him down. No, you can’t hold him. Be careful!”

‘No! Don’t pour your orange juice on Boris. That’s not nice.”

“No! Don’t poke Boris.”

“No, you can’t give him a hug. We don’t hug tortoises. Oh, that was a nice hug.”

Jimmy trying to kiss Boris.

Jimmy trying to kiss Boris.

“Here, I think Boris wants to go back in his tank now. Say “Goodbye, Boris.'”

Actually, Boris didn’t seem to want to return to his tank at all. He was fine and seemed to enjoy the crazy antics of the 2 year old that loves him. But I couldn’t take anymore. Jimmy keeps me busy. He is fun and inquisitive and a joy to be around, but that kid can get into mischief as fast as any I’ve ever seen. Wish me and my little Russian tortoise friend luck. We need it.

PANDAS Awareness Day

Today, October 9th, is PANDAS Awareness Day. I am dedicating this post to all of the families battling this terrible illness. You are not alone.

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One morning toward the end of February 2014, Lu woke up for school and complained that she wasn’t feeling well. She did not have a fever and her symptoms were vague, but I assumed that she was coming down with something so I sent her back to bed. A few days passed without improvement. There was never a fever and Lu never complained of any localized pain, just a feeling of general malaise and exhaustion. I took Lu to a local urgent care where she tested positive for the flu, specifically H1N1. We started Lu on Tamiflu that evening.

Lu was not feeling well.

Lu was not feeling well.

Several days passed and I was not seeing the improvement in Lu I would expect. She still had no fever and her symptoms continued to be vague but I had a feeling something wasn’t right. We went back to the urgent care and this time they did a throat swab. Lu tested positive for Strep A. The doctor was surprised because the symptoms we were seeing weren’t typical, but she didn’t seem too concerned. Lu started on a 10 day course of amoxicillin that evening.

The next week, Lu reluctantly returned to school. It was unusual for her to be so resistant about going to school. She was a straight A student, well liked by both students and teachers. Lu was known for being driven, intelligent, mature and responsible. This behavior was unlike her, but I wrote it off as evidence that she still did not feel well. She also began to behave as if she were much younger and she developed an intense fear of leaving the house. That week she was able to attend school 2 days out of 5. The next week, we still were not seeing improvement. Lu attended 1 1/2 days of school that week. One morning, after I told Lu that she needed to at least try going to school, her entire body froze and she became completely unresponsive. That morning we took our first trip to the ER. Their guess was that Lu had a seizure.

That weekend, Lu took the last of the antibiotics. She still was not feeling well, with constant headaches, joint pain, chest pain, abdominal pain, nausea, and lethargy. The next week, we saw one of the doctors from our general practitioner’s office. The doctor insisted that the strep infection had attacked her digestive tract and that it could take several weeks for Lu to start feeling like herself again.  Lu was also diagnosed with inflammation of her chest wall because of the chest pain. I was told to give her Motrin for the pain, but otherwise there was nothing wrong. Lu tried attending school a couple more times that week but was not able to make it through an entire day. Then things turned for the worse.

Lu began to have more seizures. She was terrified of leaving the house or riding in the car. She complained that she “felt dead.” She started hallucinating and talking about 3 friends that stayed in her room with her and kept her company. She became paranoid and believed that our family was going to die. Lu did not want me to leave her for any reason. She would walk around the house in a trance-like state with her hair in front of her face, stepping first on the toes of her one foot, then dropping down onto the ball of her foot with a jerky motion all while dragging the other foot behind her. As she would do this, she would tear paper into pieces and drop them all over the floor. She took 1 piece of paper and tore it into pieces, 1 piece for each family member, placed the pieces in a plastic cup and put the cup in the middle of the basement floor. Lu then covered the cup with a laundry basket and told us that it needed to stay there in order to keep her family safe. She would check on the cup several times a day to make sure it was not disturbed. One time, Lu found that the cup had been moved to the side of the room. She became distraught, completely inconsolable.

Lu in the ER.

Lu in the ER.

Every day, Lu would cycle between symptoms. Her vision would blur, she would lose the ability to speak, her handwriting would become illegible, she would lose feeling in parts or all of her body, she would lose the ability to hear, she would lose the ability to access her memory, she would struggle to fall asleep and then to wake up and we were still seeing the seizures. It was not unusual for Lu to have long periods of time, over 20 minutes, that she was unresponsive. She was battling major depression and rages. We were in and out of ERs, specialists’ offices, and hospitals. None of the doctors had an answer. My mother found PANDAS in her research and we suggested it as a possibility, but most of the doctors ignored the idea – mainly because Lu was presenting with psychosis, not OCD. Our family practitioner did not shut down the idea though. He placed Lu on Home Bound services for school and instructed me to find a PANDAS specialist. So, that’s what I did. It was April by this time.

In May 2014, we took a trip to Chicago to see a leading PANDAS doctor. He talked to Lu and made her feel comfortable. She described some of her symptoms and he responded with even more detail about what she was experiencing. It was the first time I saw her relax with a doctor. She could tell he understood. We were finally getting some answers. The doctor started Lu on more antibiotics and steroids. Within days, we began to see improvement.

Lu enjoying Chicago.

Lu enjoying Chicago.

The next problem was finding a local doctor that could treat Lu. Chicago is quite a distance from where we live and I really wanted a doctor that we could see regularly. Thankfully, I found a PANDAS Facebook group from my area. One of the mothers was kind enough to offer us her son’s upcoming June appointment with a pediatric neurologist that is familiar with and treats PANDAS. I will forever be thankful to her. Our neurologist is one of a kind. He has been helping us ever since.

It has been 20 months since Lu first got sick. The problem is that just because we have a diagnosis, it doesn’t mean we have all of the answers. We are still fighting to get Lu stabilized, though she is better than she was in the beginning. Her symptoms continue to go through cycles all day long. She does better in the warmer months, when we can keep her away from a lot of illnesses. PANDAS is an autoimmune disorder, so whenever Lu’s immune system flares up, symptoms get worse. We tried getting Lu back in school last year. She made it for half of the first day. That’s it. This year, our doctor didn’t even want us to try it. He wants me to keep her away from germs as much as possible.

Lu and Noel

Lu and Noel

 

In desperation, last year I started searching for anything in addition to meds that might help Lu. I came across the idea of a service dog. On November 1st of 2014, Noel, Lu’s assistance dog, joined our family. She has been a wonderful gift. Noel is able to do so many things for Lu that no person can do. She has made significant improvements in Lu’s quality of life. They are an amazing pair.

As a foster parent, I have access to resources that I otherwise might not know about. Thankfully, we have been able to obtain community services. A therapist comes into our home once a week to work with Lu. When we describe the symptoms of what we see, there are a lot of comparisons with multiple personality disorder, schizophrenia, catatonia, dementia, bipolar disorder, PTSD, OCD and major depressive disorder. Lu does not fit neatly into any of those diagnoses, but she definitely has components of each. In July, we also found that Lu has Lyme Disease. Though the new diagnosis answers a lot of questions about lingering symptoms, it muddies the water further as to treatment options. Adding to the difficulty is the lack of knowledge in the medical community about PANDAS. Often, I find myself explaining the illness to doctors and nurses. But honestly, I’m tired.

So, why did I write this post? To let the other PANDAS families out there know they are not alone. To help parents who are trying to find answers. To give a glimpse of what it can be like to live with this illness. To raise awareness.

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Moments from My Week

Don't bother me, I'm concentrating.

Don’t bother me, I’m concentrating.

It’s been a busy week here, as usual. I thought it might be fun to post some moments, in photos and quotes, to give my readers a glimpse of what I hear and see in a normal week’s time. I hope you enjoy.

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Where’s Jimmy?

“Jimmy, GET OUT of the pantry!!!

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Let’s see if the Vaseline top will flush.

“Mom, he just flushed your good pen down the toilet.”

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Because there is no bad place for a monster truck.

“Give that to me! Do you want me to bite you?”

One tired Princess.

One tired Princess.

“Mom, my body and my brain don’t like my teachers. I like my teachers, but my body and brain don’t.”

What? I'm just reading a book.

What? I’m just reading a book.

“MOM, he’s in the dryer again.”

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Let’s hide the chips in the toy cabinet. Mom will never find them in there.

“I need more blood.” (Fake blood- that’s for a later post.)

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Quincy both resting in and chewing apart his toy bin.

“I got in trouble at school today because I burped in my friends’ faces.”

You mean it's not supposed to hang like that?

You mean it’s not supposed to hang like that?

“They locked us out!”

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Because you can’t have too much of a good thing.

“Night night, Grandma.”

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Jimmy couldn’t wait to try the zucchini. He didn’t like it.

“Mom, he put my toy in the tortoise tank!”

Because putting the toilet paper on the roll is just asking too much.

Because putting the toilet paper on the roll is just asking too much!”

“Mom, do you hate me now?”

“He wants to see you. He does not want to see his workers, but he wants to see you.”

“Mom, I’ll stay with her. You go rest on the couch and I’ll get you if I need you.”

“I love you, Mom.”

Believing in My Bigs

My Bigs

My Bigs

These three are my teenagers. They keep me up to date on the latest apps, games, music, and pop culture. They are smart, funny, artistic, and completely different from each other, but they have a close bond and, boy, do they have each other’s back.

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Mike enjoying the ocean.

Mike is our 16 year old. He is one of the most resilient people I have ever met. He joined our family almost 2 years ago, after months of visits, meetings and preparation. I can’t imagine our family without him. He is brave, loving, and kind. I am proud to be his mom; thankful that he chose to allow us to adopt him. Because the adoption is not finalized, I cannot post any identifying pictures of Mike.

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Mike & Sirius

Mike loves dogs. He has taken a special liking to our 10 year old husky/ lab mix, Sirius. Sirius now enjoys sleeping in Mike’s bed and lounging in the quiet, though messy, solitude of Mike’s bedroom. Like most teens, Mike is a video game enthusiast. He also loves basketball, pizza and sugar. Mike is well spoken, and because of his history with foster care and adoption, he speaks at events encouraging other foster children not to give up hope.

Leo

Leo

Leo is our 15 year old. He is tall, smart, athletic, charismatic and engaging. He loves history, architecture and science as well as video games. He hates having his picture taken, so I don’t have a lot of photos to choose from. Though, I’m fairly certain he uses Snapchat without a problem. Leo attends a charter school and is enrolled in an IB (international baccalaureate) program. More importantly, he just received his driver’s permit. If you think of it, say a prayer for us.

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Leo catching in a tournament.

Leo also has an intricate knowledge of baseball. He has played travel baseball for several years and is developing his skills as a catcher, pitcher and first baseman. This year, he will be trying out for the local high school team.

Lu

Lu is our 13 year old. I wrote about her and her service dog, Noel, here. Lu is our artistic one. She is sweet and empathetic and wise beyond her years. Her illness has exposed her to a darker side of life, which has given her an even deeper compassion for others, especially those with mental illness. She was on track to attend the same school as Leo until she became ill, just under 2 years ago. Since then, Lu has worked on finding other areas to excel in. She has become an amazing dog handler, she has applied for and was accepted as a co-owner in 1 of her favorite band’s Instagram fan sites, she is learning photography, and her new passion is special effects make-up.

Lu loves coloring her hair.

Lu loves coloring her hair.

Lu is home-bound most of the time, so we do things here that help her to feel better. One of those things is changing the color of her hair. Lu has so much fun picking out the new colors and changing her make-up to accentuate her features and her hair. Her hair has been blue, green, pink, purple, red and mixtures of all of those. Right now, Lu’s hair is bright red. I love how it accents her skin color.

Mike, Leo and Lu keep this house filled with fun and laughter. They are quick with sharing a joke, a meme, or a funny video. I love watching their personalities grow and develop. They have so much potential. I really do believe in them.

Mad For My Middles

My Middles

My Middles

Oh, these three. Life is never dull with my middles. I was trying to come up with words that start with “M” to describe them. I thought about words like mischievous and misunderstood. But I think I would do better to think of a list of most likely to do. Most likely to say anything. Most likely to join in the adventure. Most likely to try something new. Most likely to think outside the box. Most likely to speak up. Most likely to help someone in need. Most likely to be ok with who they are. These three are heroes in my book.

Eddy is clearly awesome.

Eddy is clearly awesome.

My oldest middle is Eddy. He is 12 now. I have never met a kid so concerned about helping others. If Eddy sees a person in need, he helps. It’s just who he is. It’s not unusual for me to find him running to open doors for people, or carrying things for strangers, or going out of his way to help a little kid in need. He is my biggest helper in taking care of Lu. The two of them have been inseparable since he was born, and when Lu got sick, Eddy took it upon himself to stay by her side. I don’t know what I would do without him. Eddy doesn’t want recognition. He is happy to keep to himself, preferring time spent on his own projects than being with groups of friends. Not that he doesn’t have friends, he just needs time alone to recharge.

Eddy reading to Jimmy.

Eddy reading to Jimmy.

Besides being a Minecraft junkie, a computer whiz, and just a regular old smart kid, Eddy is an adventurer. He recently joined Civil Air Patrol. The program fits perfectly with Eddy’s thirst for adventure, love for aeronautics, and his desire to serve his community. I love that he is learning leadership skills and has found an activity that is his own.

Marie

Marie

Next in line, comes my Marie. She is 8 years old and in the 3rd grade. Marie is my tender hearted, animal loving thespian. When she was 2, she would perform during the 7th inning stretch at baseball games. Most recently, she played the role of The Ace of Spades in Alice in Wonderland Jr. at our local theater. Unfortunately, Marie has a milder form of the same autoimmune disorder that Lu has. We caught hers much earlier and so far have been able to keep her stabilized.

Marie and Lu after the play.

Marie and Lu after the play.

Marie is an awesome sister. She is good at keeping SJ and Jimmy entertained and she is Lu’s sidekick. She knows how to change diapers and feed babies. She can also make a mean cup of tea. Few have the capacity to love others like Marie has.

SJ

SJ

Do you see this kid? Can you see the mischief in his eyes? SJ is my fun loving, question asking, everything moving all of the time kid. He doesn’t stay still, even when he’s sleeping. He loves trucks, cars, planes, super heroes, and most of all . . . Dirt! If there is a pile of dirt, you will find SJ in it. Last year, he came home so covered in dirt and sand that he infested his bedroom with sand fleas, and that was after we showered him and took his dirty clothes- we think the culprits hid out in SJ’s shoes.

SJ is going to school.

SJ is going to school.

This is the big year that SJ joined Marie on the school bus and headed to the big kid school. I figure the sign SJ’s holding is fair warning. Thankfully, I haven’t received any calls from his teachers yet. The notes home don’t count.

My middles baking a treat.

My middles baking a treat.

I mentioned that these kids are heroes in my eyes. They really are. This crew has been through a lot. They know how to love hurting kids that join our family. They know how to encourage a chronically ill sibling. They know how to follow safety plans and how to react in crisis. They know how to have fun and the know how to make me smile after a hard day. My middles are amazing.