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.

Mad For My Middles

October 1, 2015 / Mandy May / Leave a comment

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.

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.

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

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 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.

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.

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.

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.

Loving My Littles

September 27, 2015September 27, 2015 / Mandy May / Leave a comment

Most mornings these days start with my little guy, James, rising before the sun. If he isn’t already in our bed, Jimmy climbs in, dragging his blankie behind him, and announces that he wants to go downstairs. This is my cue to get up and go because this kid is a bundle of energy and waking his siblings is the first thing on his agenda for the day. If he wakes his siblings, it is NOT a good day.

My granddaughter, Love.

Introducing Love, my oldest granddaughter. Both she and Jimmy are 2 years old, and they are best friends and partners in crime. It doesn’t take long for Love to hear Jimmy’s antics and come down to join in.

Breakfast

“Wuv, do you wanna eat?” Jimmy asks. Then they both climb into their seats. We can’t put their seats too close to each other or there will be a battle, stolen food and sippy cups, dumped cereal, and a brawl.

Coffee, you complete me.

Most mornings start off with a Leapfrog video while the littles eat breakfast. That’s how I get my coffee and quiet, well almost quiet, the two essential things I need before I can function.

My 2nd granddaughter, Princess.

Princess is my littlest little in the house. (I have another little grandson that is younger, but he hasn’t been here yet.) Princess brightens our days with sweet baby smiles and coos. She stole my heart the moment I laid eyes on her. Thankfully, she is an easy baby, because Jimmy and Love keep us busy.

Jimmy, Love, & SJ playing with water on the deck.

We try to have fun and keep the little ones busy. Pouring and stacking is one of their favorite activities, so I thought it would be fun to set up a water station the littles could stand at to play.

It’s NOT a pool! Get DOWN!

Jimmy had other plans. I can’t turn my head for a second with this kid.

One tired little boy.

The poor, sweet boy tired himself out. Doesn’t he look innocent? Adorable, even?

You’re resting there?

And this is what he was really doing.

Jimmy opening the diaper rash ointment.

And seconds later, he was into the ointment that was left on the table.

Jimmy warming his blankie in the dryer.

And then he decided to warm his blanket in the dryer.

I won’t show you the pictures of Jimmy in the dog’s crate, swinging on the stairway gate, undressing himself, and escaping up the stairs. He also had fun reading some of his favorite books, playing on SJ’s iPod, pouring Princess’s formula from her bottle into my Pepsi, feeding the dog from his plate at dinner, and throwing his sister’s iPod in the toilet. (Yes, this was all today.) Jimmy walks on the wild side.

Love and her Combos.

Love usually just tags along behind Jimmy and watches. She doesn’t want to get in trouble, she’s a good girl. But don’t eat chips or snacks near her. She will give you big, sad eyes until you give her every last one.

Trying to get a picture of the three littles.

These little ones certainly keep us busy. But oh, how we love our littles!

Poor Alex

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

Today is the big day. The day that Alex loses a part of himself. The day he becomes less than he was. We knew this day was quickly approaching. This week at dog training, Alex lunged at another dog. Although he was immediately corrected, that behavior is never acceptable. Our trainer, Mrs. G, said, “Time to get him fixed.”

Mrs. G is a small woman, but boy does she carry a lot of authority. Mr. May’s response to her directive was, “If Mrs. G says it, then we do it.” (I am currently working on a list of things that I’m going to ask Mrs. G to tell Mr. May. Suggestions are welcome.)

Anyway, it’s been a rough couple of days for my poor naughty boy. The older boys in this house couldn’t walk past him without saying, “Snip, snip, Alex.” He is at the vet’s now, and gets to come home later today. Hopefully, Alex will be a humble Alex, a small and sad Alex, and a “Oh, Mom, am I so glad to see you” Alex. “And it will take the bounces out of him.” (Rabbit is my BFF. Sorry, Winnie the Pooh.)

Alex, when he learned why he was at the vet this morning.

Court Review

September 23, 2015September 25, 2015 / Mandy May / 2 Comments

Yesterday, we had a court review scheduled for 1:30. This is a regular thing in foster care. Case reviews are generally scheduled every 3-6 months. I didn’t attend court hearings for my younger foster children because it was not necessary, although I was welcome to go if I wished. The hearings were just formalities and there was not a need for me to be present. My little ones definitely needed me to be home with them more than I needed to be in court.

It’s different with older foster children, generally anyone past the age of 14. Although teens have the right to miss case reviews, I encourage my foster children to go. I encourage my kids to advocate for themselves and to be present when adults are making decisions for them. After, we talk about the proceedings and I make sure my kiddo has a good understanding of everything that took place. Yesterday was Mike’s review hearing.

I have to admit that I went to court with a feeling of frustration. I was so hoping that Mike’s adoption would be finalized by now. For some reason, it is taking FOREVER! We started the process back in February. We worked steadily, gathering and compiling everything we needed, and it was a lot. We submitted the last of our forms in May. Our home study, the official report on our home and family, and the adoption petition were sent to the state capitol for review on June 30th. It wasn’t until the first week in September that we received word that the state approved our petition. That’s a long time for us to wait, but for Mike, who is taking a huge leap of faith by joining a family again, it seems like an eternity.

We arrived at court on time and sat in the waiting area. We sat with our adoption worker and waited for our foster care case worker, who was in a different hearing, to join us. We also waited for Mike’s lawyer, known as his guardian ad-lidem or GAL, to arrive. We waited only a few minutes for our case worker. Then the real waiting began.

While we waited, we talked about Mike’s upcoming adoption, the high turn around rate in the child welfare agencies, and the frustration of time wasted in courtroom waiting rooms when case loads are so high that workers barely have time to visit all of the children on their load every month, let alone finish their paperwork. Our worker is one of the best I’ve ever met. Her load is almost twice the legal capacity. So much for laws.

More time passed, still no sign of Mike’s GAL. The prosecutor tried tracking the lawyer down, so we could just get our case heard. We knew it would be a short hearing. Finally, the GAL was found, she was in another courtroom on another floor of the building. Upon further investigation, it was discovered that she had scheduled 4 hearings for 1:30. Apparently, ours didn’t take precedence. That didn’t surprise me. Mike has lived with us for 2 years and in that time, the GAL has never been to our house or so much as discussed Mike’s case with him on the phone. Usually, she pulls Mike into a side room a couple of minutes before we enter the courtroom and asks him if there is anything he wants to discuss. Sadly, the GAL represents this child to the court. She makes the legal recommendations and often, the judge listens.

Over two hours later, the judge got sick of waiting and called us in to her courtroom without Mike’s lawyer. The prosecutor was astonished; she had never seen that happen before. Our hearing was brief, about 5 minutes. The judge congratulated Mike on his upcoming adoption. (Our worker filed the adoption petition with the court that morning. It won’t be long now!) When it was Mike’s turn to speak, he expressed a desire to just have this adoption done. He’s been waiting so long.

Soon Mike will be done with court reviews and family team meetings and social workers coming all the time. We won’t have to get agency permission for him to spend the night at a friend’s house. I will be able to sign his medical paperwork and I won’t have to update the agency about every little bump. scrape, or bruise. Mike will be taking our last name and making a few changes of his own. I’m so excited to be on this journey with our son.

Runaway

September 19, 2015September 25, 2015 / Mandy May / 11 Comments

I’ve been a mother for a long time . . . A. Long. Time. There are things I just know after all of these years. I know that each child is different and that you can’t parent them all the same. I learned the hard way that parenting adopted and foster children is a lot different than parenting biological children. I have learned to read my children’s body language and behavior because most of the time behavior is a clue to underlying issues. If we address the issue, the behavior can then be addressed. I am also keenly aware that, as the mother of the home, my attitude sets the tone in the house. I KNOW all of this and I’m usually decent at parenting with this knowledge in mind. Then there was yesterday.

Yesterday was an exhausting day following two overwhelming weeks. September is always a tough month here. All of the kids are getting used to their new school schedules. The month is full of triggers for my kids with PTSD and emotional impairments. Illness runs through the house making its victims miserable but also exacerbating symptoms in my two daughters with autoimmune disorders. Then we add in our normal meetings and appointments plus school meetings and the month is full. This year is tougher because our young adult daughter is staying here while she gets some things settled and we are helping care for her two babies. Yup, I’m just a little stressed. No excuse.

Back to yesterday. Mike, our almost adopted 16 year old, has had a rough week. He is struggling to get back on a school schedule, work through some pretty tough therapy, deal with the stress of his upcoming adoption, manage some serious trauma triggers, and is balancing the heaviest academic load he has ever had. Normally, I try to see things from Mike’s perspective. He’s been through more than any 16 year old I have ever met and he’s an incredible kid. I am extremely proud of him, he has accomplished so much since he has been with us. He is MY SON! But yesterday, after the 5th e-mail from the school, my patience had worn thin. Mike hadn’t really done anything wrong, but he was becoming increasingly agitated, and in the process annoying his teachers and the school staff. These were clues that I needed to step back from the situation and get to the root of what was causing Mike’s agitation. But I wasn’t watching the clues. I was at the end of my rope.

Mike walked in the door as the 3 month old was screaming. Immediately, I began interrogating him. Why was he annoying his teachers? (Foster Parenting 101: Never ask Why.) The argument commenced. Soon, Mike was blaming the whole situation on me and as our voices raised he said something that struck a nerve. I had had it!

“That’s it! Go to your room!” I yelled.

“I’m leaving!” Mike spat back.

“Fine, then leave!”

“Fine, I will!”

“FINE!”

“Mike, you can’t leave. Just go to your room.” I said as I determined to bring my emotions back under control.

“You said I could leave, so I’m leaving.”

“Go To Your Room!” my voice again raised.

Mike walked into his room, threw some clothes in his backpack, and headed toward the door. I again told him to stay, but he was set on leaving. He walked out the door as I stood there seething with anger. I sat and tried to get my emotions under control again. I knew I would have to go after him, but in the state I was in, it would do no good. After about 5 minutes, I walked outside to see where Mike had gone. I saw him walking down the sidewalk with Leo, our 15 year old. I figured Mike would walk it off and as long as he was with Leo, there was nothing to worry about. I would apologize for acting like a crazed lunatic later, when we both had a chance to cool off. I went to give the baby her bottle.

About 20 minutes later, Leo returned to the house alone. Mike told him that he was going to keep walking. Rolling my eyes, I decided it was time to go find my wayward teen. It took a while to get all of the kids set so I could leave, but I was reasonably confident that it wouldn’t be too hard to find him. Wrong again. After an hour of driving around, I went home and started making the necessary calls. I made dinner and waited for the police to show up.

Thankfully, the officer that came is an old friend, so I was able to relax a little as I told the story. We drove around to check a friend’s house and some other areas that Mike might go. Still no luck. The officer came back to our house and made sure that he had a detailed description of what Mike was wearing when he left and then updated dispatch. I went back to watching the little ones and began their bedtime routines while my husband took Lu and Marie driving around to look for our son. Leo printed out a map, estimated how fast Mike was walking, and drew circles around how far Mike could make it every 2 hours. Then he took a bike and rode around, joining the search.

As the hours passed, me heart sank further. I watched out the windows hoping my boy would come home. I thought of the story of The Prodigal Son and understood how the father watched the road every day. Finally, at the little ones’ bedtime, Sergey was able to take over for me so Eddy and I could rejoin the search. We drove around until it was too dark to see. With a heavy weight on my heart, we returned home. I sat at the window and watched some more. I tried hard to push away the frightening thoughts that kept popping into my mind. Five hours had passed, then six, then seven, still no word. I fell asleep.

After midnight, there was a knock on the door. I don’t think I have ever jumped up so quickly. Through the window I could see an officer standing there next to my son. Waves of relief and joy passed over me as I saw my boy standing there in one piece. The officer told me that he had been found walking along a major highway. He was hungry and exhausted and just wanted to come home. Mike had told the officer about some of the bad things that had happened in his past but then told him of our home, how good he has it here, how we love him and take care of him. I thanked the officer as he left and turned to Mike. He looked at me apprehensively, waiting for me to start scolding. I reached for my son with trembling hands, pulled him to me, and held him. He is my son. He is home.

Let’s Play a Game: Pay It Forward

September 18, 2015September 25, 2015 / Mandy May / 5 Comments

Last night, as I was surfing through fellow bloggers’ sites, I came across http://maggiemayq.com and I really liked something she had posted. She came up with the idea to take a Pay It Forward Facebook post and adapt it to blogging. I copied this from her site.

“This world needs as much kindness as it can get. I’m participating in this ‘Pay It Forward’ Initiative:

The first five people that comment on this post with ‘I’m in’ will receive a surprise from me at some point this year (2015), anything – a book, a ticket, something home-grown, homemade, a postcard, any surprise!

There will be no warning and it will happen when the mood comes over me and I find something that I believe would suit you and make you happy. These five people must make the same offer in a blogpost(copy and paste it + link to me), so that we can form a web of connection and of kindness.

Once my first five have commented ‘I’m in’ I will send you an e-mail to get your contact details (so remember to leave your e-mail when leaving your comment).

Remember the act is kindness so only respond if you truly will keep this going and fulfill your end of the bargain.”

So, what do you think? Are you in?

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.