My One and Only

March 21, 2017 / Mandy May / 3 Comments

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I’m going to let you in on a well-known secret: I don’t like to watch TV. I don’t like the lights. I don’t like the noise. And I hate realizing that I just lost 30 minutes of my day because I sat through an entire episode of Kid Danger- again.

My aversion works well for my kids because, in general, I don’t torture them with boring, adult programming. They are free to argue amongst themselves about whether they want to watch Disney, Nick, Boomerang, or Cartoon Network.

On rare occasions, I do take over the TV. My kids all moan as I turn on the History Channel or PBS. If I really want them to scatter, I turn on Downton Abbey. Nothing sends them fleeing like the theme song of that lovely, British drama. But even the lure of watching Maggie Smith play the Dowager Countess does not have me turning the TV on very often.

I do have one show, though. One that has had me captivated from the first episode. One that I will fight to watch. Once a week, that TV is mine. And no, I don’t care if it IS the middle of March Madness. We do have a DVR, for goodness’ sake!

At 8:45 on Sunday evenings, I make sure the littles are in bed. The middles are sent to go do something- anything, as long as it doesn’t disturb me. Evening meds are distributed and everyone is warned that, “This is My Time. Do NOT disturb me. If you bother me the house had better be on fire or someone better be bleeding out.”

I think those are clear instructions. What is difficult to understand about that? Why do they have such a hard time following those simple directives? Even their father warns them to leave me alone. It’s for one freaking hour! How hard is that?

Apparently, too hard, as this week Shaun had a TOTAL meltdown ten minutes into my show because- get this- his ears were hot. What the heck? Mind you, he was fine all day. He had no pain, no swelling, nothing other than a slight redness on the tips of his ears that completely went away by the next morning. He had been in bed for almost an hour at that point. What could he possibly have been doing? Thank goodness for my DVR.

Now, do you think the drama ended there? No. Lizzie, who is always worse at night, had a full flare-up. Her head started pounding. She started hallucinating and having delusions. Then, just for fun, she had a seizure. I had to fight to get her meds in her and then monitor her until she finally fell asleep on the small sofa. Again, my DVR came to the rescue.

About the time my show was supposed to end, things calmed down enough for me to sit and watch. It was also about the time for Simon to go to bed. He was, as usual, in the basement irritating his big brothers.

Trey and Joe took Simon’s bedtime as their moment to exact revenge. The hollering and riotous laughter made it nearly impossible for me to hear what was happening on my show. I had about had it. I threatened to take away everything they hold dear- namely, their electronics.

The big boys were exasperated. “But Mom, your show is supposed to be over. We’ve been waiting to watch the game!”

My eyes shot daggers and smoke started escaping out my ears. Wisely, they backed away, into the kitchen to look for a snack while they waited to take control of my TV.

Here’s the thing about Trey and Joe. They are low key and soft spoken all day long, but in the evening, they come to life. After 8 pm, the two of them are incapable of doing anything quietly, and their noise level rises exponentially when they are together. They barely escaped the evening with their lives- and more importantly, their electronics.

So, I ask you, am I asking for too much? Should I give up on my time to escape reality to relax in a post-apocalyptic world ridden with Walkers and Saviors? I’m sorry. I can’t. I just love The Walking Dead.

PANDAS Awareness Day

October 10, 2015October 10, 2015 / Mandy May / 2 Comments

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.

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.

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.

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.

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

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.

Moments from My Week

October 4, 2015October 4, 2015 / Mandy May / 3 Comments

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.

Where’s Jimmy?

“Jimmy, GET OUT of the pantry!!!

Let’s see if the Vaseline top will flush.

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

Because there is no bad place for a monster truck.

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

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.

“MOM, he’s in the dryer again.”

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.)

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?

“They locked us out!”

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

“Night night, Grandma.”

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!”

“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

October 4, 2015October 4, 2015 / Mandy May / Leave a comment

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.

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.

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 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.

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 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 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.

Enjoying the moment

September 17, 2015September 25, 2015 / Mandy May / 3 Comments

“Enjoy the little things in life, for one day you may look back and realize they were the big things.”

Two years ago, our lives changed forever. Our Lu came down with strep throat and suddenly everything changed. Overnight, she went from a straight A Honor Roll student on track to attend a prestigious academic high school to a girl that could barely function, let alone concentrate on schoolwork. Her body has turned on itself and her immune system is attacking her brain. For the first few months we were just trying to get a diagnosis. Finally, we found a specialist that could give us answers. Our Lu has PANDAS, pediatric autoimmune neuropsychiatric disorder associated with strep throat. Thankfully, through a PANDAS parent site, we were directed to a wonderful neurologist that has become a PANDAS expert. But, even with months of treatment, our Lu still could not stabilize. That’s when we learned that she also has Lyme Disease. We are on a big learning curve. I am hoping to share what I am learning, but most of all, I want to say . . .

Find joy!

Look for small moments that make you smile. Hold on to these treasures, because in the end, these are the things that matter.

Our Lu is finding joy. Last autumn, in a desperate search to find anything to help our girl, I contacted a service dog company. Miracles happened, and our daughter was matched with a dog immediately. Noel has been a life line to Lu, even in some very dark and scary places. The two are inseparable. Noel keeps Lu safe and gives her something to feel good about. See, Lu can’t go to school. She can’t be left unattended. She has seizures, memory loss, her eyes have trouble focusing and that’s not the half of it. But Lu is really good at training her Noel. So good, in fact, that we got two more puppies for Lu to train. She may not be able to go to the high school she had heart set on, but she is a darn good dog trainer. Right now, this is where she finds her joy. And watching Lu work magic with these dogs fills my heart to overflowing.

This evening, like most Wednesday evenings, we were at dog training class. Lu had a seizure and collapsed to the floor. Noel jumped into action doing exactly what she has been trained to do. Noel has a vest that she wears in public to identify her as a service dog. We all agree that her vest is really a cape because Noel is a super hero.

Just Keeping On . . . to whom I write

September 15, 2015September 25, 2015 / Mandy May / 6 Comments

I write to parents, to encourage them to keep on, because this parenting thing is hard and we never know what is going to come our way.

I write to new parents that are just starting this adventure, to encourage them to keep on through the sleepless nights and the long days and let go of guilt and just enjoy this time while their little ones are still little.

I write to the parents of children with chronic disorders, to encourage them to keep on fighting for their kiddos, to do what it takes, though the battle is long.

I write to the parents who have adopted their children, and daily fight the monsters of trauma and loss, to encourage them to keep on helping their children to heal and become whole.

I write to the foster parents who are ready to take in a child at a moment’s notice, those that give their love, time, money, and resources to help a child in need, to encourage them to keep on though the road is rough and uncertain.

I write to the host parents of international exchange students who take in teens from a different culture and show them love and give them a family while they are away from everything they have ever known, to keep on loving, learning, and teaching.

I write to the parents of teens in difficult places, who know the feeling of helplessness when their children make decisions that hurt and destroy, to keep on loving through the pain.

I write to the parents of large families, whether biological, adopted, foster, host, or a mixture of any of these, to keep on smiling through the chaos that their lives bring.

I write to share my story so that I might encourage others to keep on, because I’m on the journey too.

Everywhere and Nowhere

September 5, 2015September 25, 2015 / Mandy May / Leave a comment

Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.

Excerpt from “The Road Not Taken” by Robert Frost

I have always felt different, like no matter how hard I tried I never quite fit in. When I was younger, this made me uncomfortable. I just wanted to be accepted and part of the crowd. But as much as I wanted to be normal, I didn’t want to be either. As a teenager, I fell in love with Robert Frost’s poetry, especially “The Road Not Taken.” I knew I wanted to live differently. Eventually, I became comfortable in my own skin. Being different became a blessing, not a curse.

As a teen, I knew that I wanted to adopt some day. I also knew that I wanted to have a large family. I told anyone that would listen that I wanted to have twelve kids. Now, I want more than that. I hope that I can continue to adopt older children for a long time to come. But, having a large family with children in many different age groups and from different backgrounds, races, and cultures makes me far different from the other mothers I know. I fit everywhere, and nowhere at the same time.

I have a toddler that will be potty training soon, but I am not a new mother. I have a child that will be going off to Kindergarten next week. This is the seventh child I’ve sent off to school for the first time. It’s lost its nuance. I have another elementary aged child and two middle school aged kids. One of my daughters is home bound. She cannot attend school so a teacher comes to her, but I am more than just a mother of a chronically ill child. I have one child in our local high school and one in a charter high school. I get requests to volunteer frequently, but that is usually not possible. I am not a mom that has the freedom to plan ahead. One of my kiddos is in a juvenile detention program. Some of my kids have histories filled with severe trauma, abuse, and neglect. Some of my kids have been abandoned. My kids have a lot of needs, but I am not just a special needs mother. I have a son that is a young adult in an independent living program, and two more young adult daughters that are out on their own making a way for themselves in this world, but I am not an empty nester. I have three grandchildren that are precious to me, but I am not just a grandmother. I have host sons from all over the world, and one host daughter. They worked in professional baseball or were exchange students. Some came and went, some stayed for a while and then went on their way, and some stayed and became permanent fixtures in our family. They are all my host sons, some are more than that. But I am not just a host mom. I am all of these, but by fitting in all of these categories, I fit in none. My brain and heart are too full to concentrate on just one or two of my mothering duties. I’ve seen too much.

My hope is that I can encourage other mothers out there. Ours is a difficult job, but well worth the price. Let’s lift each other up. Let’s help the moms that don’t quite fit in.

It Begins

August 30, 2015September 25, 2015 / Mandy May / 4 Comments

It’s almost quiet here tonight so I am taking this opportunity to get my first post in. Quiet doesn’t happen here often. Most of the kids are in bed. The big boys are downstairs watching TV. I’m stealing this moment. I should be in bed, but the idea of finally starting this blog is too tantalizing.

I’ve been thinking about starting a blog for a long time now. Many of my friends suggested I should. My story is a long one. I’m not sure how much I am ready to tell, but we will start here and see where we end up together, ok?

First, a look into my life: My name is Mandy. I am a wife and mother. It’s that simple. I am married to Jeff. He’s an incredible man that keeps our family going. His passion is technology and he works as a computer programmer. The depth of his knowledge amazes me. He is a devoted husband and father and I am blessed to be his wife.

We have seven children living at home right now. That number can change at any given moment because we are foster parents. Our youngest is two years old. Our oldest living at home is sixteen. Our youngest is adopted. Our sixteen year old will be soon. There are four biological kids in the middle and one more adopted kiddo in the middle as well. Then we have three more adopted kids that live out on their own and one foster child that is currently out of our home, but we are hoping he can come home soon.

Then we have our five exchange students, two of whom still call our place home. They are from all over the globe, making our home multicultural and multilingual. And then there’s our baseball host sons and daughter that left us with a passion for baseball and a deep love for baseball players, especially the ones we call our own.

I can’t forget to mention our furry family members. We have a slightly obsessive love for golden retrievers. There is a story behind that. We have three Goldens that share our home. We also have an old lab/ husky mix that keeps us safe from anyone that would dare to come to the front door. Yes, that is four big dogs, if you were counting. I told you we have an obsession. Our dogs are kept amused by our three degus that occupy a large cage in a corner. Then we have our turtles and our tortoise. What can I say, we like animals.

That’s a quick overview of our family. I hope you enjoy getting to know us as I post more about each member of our family and our adventures together.