10389012_10152468237423024_150375617926075444_nSeriously, to understand me is to understand this diseases. Please read!!!

“Sometimes, Mafia Mast Cells stick to an organ or two in the body, being ticked, shooting their guns and calling in troops to help fight something that was never there to cause harm in the first place. But sometimes Mast Cells go completely nutso. They are out-of-their minds furious, and they send a memo to the Mast Cells all over the body to share in their fury. Now you have irrational white blood cells over-reacting all over the body! The ones in the skin are ticked and they cause hives, a “fun” little trick called Dermatographic Urticaria (being able to write on the skin and have it rise up in welts), as well as swelling, flushing, random itching and burning sensations. The ones in the GI tract are grumpy and now, it won’t let any food be eaten without a reaction of nausea, vomiting, reflux, stomach pain and runny stools. And to add insult to injury, the Mast Cells in the stomach are mad if you don’t eat, either. You are darned if you do and darned if you don’t. The ones in the brain are mad, causing headaches and brain fog, anxiety, depression and fatigue. That’s not all! Mast Cells can cause a drop in blood pressure, high blood pressure, fatigue, achiness, heart palpitations, wheezing and shortness of breath. And when it gets too bad, it turns into anaphylaxis.” By

This is why I have to get ready over a period of hours, taking anti-histamines; histamine blockers, ativan to calm my over-active system or I have to break out the Epi-Pen or Albuterol Inhaler.

This is why I am nervous about taking Sydney last minute to Governor School. I need time. People with chronic illnesses need time and cannot be under duress for life important duties. We need flexibility. And once I start vomiting, I am out for the day. I am even allergic Phernagren and Zofran so they do not calm the vomiting. It is truly a very complicated disease.

And when my body goes under this stress, my body makes more Dercum Tumors which are Tumors in my fat. They minute by minute press on my nerves with so much pain. Getting new ones is like getting a bee sting that turns into a tumor. I have hundreds throughout my body that sit in my lymphedema fluid adding weight that is not fat.

And those set off multiple muscular spasms throughout my body from my toes to my head. But because I have Ehler’s Danlos, these can lead to easy dislocations or soft tissue damage or thrown out back and ribs.

See the problem?

Add in a severe sinus infection that was not properly treated and you can see how I ended up in almost need of hospitalization.

I also have a torn rotator cuff, a possible fracture or broken tailbone, severely allergic to lactose and super sensitive to almost all waters including bath water, and oh so sensitive to all Salicylates.

This is life as me. On top of being a single mother to three amazing kids by adoption.

I am so thankful to Dr. Karen Louise Herbst for the diagnoses and at least beginning to understand how these work together and thankful for her continued research.

#DercumsDisease #MastCellActivationDisorder

“I absolutely LOVE it when things work the way they were supposed to.  I know what to expect.  There are no surprises (I do not like surprises one bit!).  I am prepared.  Everyone gets what they are expecting to get.  Life is lovely and the birds are chirping.  However, when things don’t work like they are supposed to, there is confusion.  There is disappointment, not to mention a fair amount of grumpiness.”

This is the case with the immune system in our bodies.  We can learn in school, we can read in text books, we can read on the internet, what it is made up of and what is designed to do.  Sometimes, though, it goes ROGUE.  No one is sure why. I have read some that think it is because of faulty genetics passed down from parents or grandparents (ie: if a parent had allergies, children are much more likely to have allergies).  Some think our immune systems deciding to not play by the rules could be spurred on by a bacterial infection or a virus.  Some researchers believe it is because of exposure to a toxin like mold or chemicals.  Maybe they all are right.  What I do know, is living in a body with a dysregulated immune system is like living inside a video game you can’t escape.  Let’s talk about Mast Cells.  They are the white blood cell master regulators of the immune system. The Mafia Bosses, if you will.  They say “jump” and everyone says “how high?”  Let’s talk about what happens in something called Mast Cell Activation Disorder.

In Mast Cell Activation Disorder (aka: MCAD), these immune cells started off as good guys, as honorable, hardworking military Sergeants, let’s say.   They are thought to be in literally EVERY PART of the body, calling other parts of the immune system into action when the need arises, by releasing chemicals called “mediators.”  These chemicals signal the other parts of the immune system to get off their backsides and get to work.  They help the body defend against diseases and they help with wound healing.  They love to be anywhere you have mucous like the lungs, mouth, digestive tract, nose, etc.  They are in blood vessels, nerves and skin tissue. And they are filled with specific chemicals designed to call specific immune system helpers.  That sounds great, right?  Fight disease.  Aide in wound healing.  But…

What if these disciplined, purposeful Sergeants of the immune system went cuckoo?  What if, instead of being able to actually recognize the enemy, they saw an enemy in benign things?  What if everything they looked at, looked like an enemy?  In response to this schizophrenia of the mast cell brain, this once helpful and reliable cell begins shooting it’s chemicals when it really shouldn’t.  And when Mast Cells are mad, they are mad.  They might start shooting at certain, random things, like when you eat chicken or oatmeal.  It could draw it’s guns at bath water that is too warm or scented, clean laundry.  It makes no sense as to why these things are bothersome to your body, but now, all of a sudden, they are.

Sometimes, Mafia Mast Cells stick to an organ or two in the body, being ticked, shooting their guns and calling in troops to help fight something that was never there to cause harm in the first place.  But sometimes Mast Cells go completely nutso.  They are out-of-their minds furious, and they send a memo to the Mast Cells all over the body to share in their fury.  Now you have irrational white blood cells over-reacting all over the body!  The ones in the skin are ticked and they cause hives, a “fun” little trick called Dermatographic Urticaria (being able to write on the skin and have it rise up in welts), as well as swelling, flushing, random itching and burning sensations.  The ones in the GI tract are grumpy and now, it won’t let any food be eaten without a reaction of nausea, vomiting, reflux, stomach pain and runny stools.  And to add insult to injury, the Mast Cells in the stomach are mad if you don’t eat, either. You are darned if you do and darned if you don’t.    The ones in the brain are mad, causing headaches and brain fog, anxiety, depression and fatigue.   That’s not all!  Mast Cells can cause a drop in blood pressure, high blood pressure, fatigue, achiness, heart palpitations, wheezing and shortness of breath.  And when it gets too bad, it turns into anaphylaxis.

Triggers for causing Mast Cells to freak out (the technical term is degranulation), can be vast and random.  They include medications, foods, supplements, hormones, stressors (physical and emotional), cold, heat, pressure, odors, chemicals, insect bites, pollen, pets and exercise.  If the correct medications aren’t in place or if the Mast Cells are not responding to the meds, anaphylaxis is not uncommon.

There are other illnesses and disorders that are frequently found with MCAD.  Those include:

 1. Allergies

2. Asthma

3. Autism

4. Autoimmune disorders

5. Celiac disease

6. Eosinophilic disorders

7. Fibromyalgia

8. Food allergies and intolerances

9. Reflux

10. EndometriosisInterstitial

11. Cystitis

12. IBS

13. IBD

14. Migraines

15.Mood Disorders

16. Multiple Chemical Sensitivities

17. POTS (postural orthostatic hypotension)

18. EDS (Ehlers-Danlos Syndrome)

What if there was virtually nothing you could eat without having to run to the bathroom?  What if during puberty or your menstrual cycle, you could not even leave your house because the pollen, exhaust fumes and other people’s perfume cause your throat and your eyes to swell? Imagine, having an anaphylactic reaction to dryer sheets or walking to the car on a winter’s day!  Crazy, isn’t it?! The situations that can cause reactions for people with Mast Cell Activation disorder is endless.

One can see how anxiety and depression are common with this immune dysregulation.  There jillions of triggers for symptoms, a handful of medicines that MIGHT work and even fewer doctors who know anything about Mast Cell Activation Disorder.  It truly is a Rare Disorder.  With MCAD, Epi pens are your security blanket and leaving your house is your nemesis. Weather is an adversary, as well as are seasons and sunshine.   You have to eat to live, and yet eating many times makes you wish you were dead.   There is no predicting what your body will do, but what you can count on is the fact that it will be unpredictable.  It can strain relationships and cause isolation.  Fear and anxiety are constant battles because of the radical way the body reacts, but the funny/not funny part of this is, it is best to avoid stress so as to not bring on a reaction.  And chances are great that you have one or more (usually much more) of the other disorders associated with this immune disorder.

But this is how life feels when Mast Cells are behaving badly, always walking on eggshells, hoping to avoid catastrophe.  I guess the cool thing about it is, now you know what it feels like to have a video game being played in your body.  Unfortunately, rarely are you the winner.

If you feel led to help, here is our You Caring Page:


Stuck in a tree doing my own thing!

💜 Happy 15th Gotcha Day!!! 💜

This day fifteen years ago was a Thursday. I awoke as usual with a clean home and a nicely made bed. I drove to work. I had a full day of activities that are included being a social worker.

I had no idea that morning nor even at lunch how drastically my life was going to change. I doubt three very young children did either, though, because of this day, their lives were dramatically saved and for one little baby, his life was spared.

I had been a licensed foster parent since that previous November (2001). I turned thirty that year and on my birthday, closed on my first home. I was still single. I worked as a social worker in foster care for the state. I played softball, soccer and volleyball in my free time as well as Bible Studies.

But to hear this story in it’s entirety, it is a story I have never quite told.

In fourth grade, we were in a Christian Bookstore and my mom allowed me to buy a book. It was called “Elizabeth Gail and Double Trouble.” It was the story of a social worker and a foster child who had a tumultuous life and was placed with a foster family when she was twelve after being in and out of foster care and beaten by her mother. I grew up in a very scientific town (Los Alamos, NM). My exposure to this type of circumstances was very limited and I was hooked.

By the time I was eleven and had read more in the “Elizabeth Gail” series, I knew within my heart that more than anything, I wanted to be a social worker, a foster parent and a missionary to the children in Russia.

Fifteen years later, those things on my heart at eleven were fulfilled (the only time I lost sight of this was my senior year for a brief month after being told repeatedly I would be POOR if I chose social work). It was short lived and the following fall I was in college and three years later (I was very motivated to graduate), I graduated Cum Laude with a degree from Lubbock Christian University (1992). I hated the college but I LOVED the social work and psychology program and poured my heart into my studies. I was also blessed with a job to be a relief houseparent at a Children’s Home for children who had been neglected and abused. In fact, it was there that I had my first unofficial temporary foster children. Their names were Jiffy (nickname for Jennifer) and Kenneth. Jiffy was a very precocious and mischievious three-year-old and Kenneth was eighteen-months old and my snuggle bug. They both became very bonded to me and the children’s home allowed me to let them spend the night with me in the dorms when I was able. I was also allowed to take them home (I was 19… crazy) from Texas to New Mexico for the holidays. I loved it. They were my first “babies.”

After graduation (and leaving them was one of the hardest things I have had to do but by then they were older and living in a foster family — I kept in contact for the years until they were returned to their birth family), I moved to Southern California (I actually did my internship there – thankful so much for my Professor, Cara Speer, who traveled so I could do this) where I worked as a residential counselor at another Children’s Home for three years.

At that time, I decided that as much as I LOVED living in California, I was making too little money to support myself and I really wanted to do more as a social worker. So, moved to Tennessee where less than I year later I found myself working for the state of TN as a social worker in foster care (1996).

Being a DCS foster care worker was absolutely everything I imagined it to be. I LOVED it (excluding the red tape and hierarchy of control freaks who weren’t happy to be there and did not share my passion for social justice). I was blessed with some amazing supervisors and team members and an attorney who was ever so gifted and taught me so much.

I had dated(and fallen in and out of love) but by the time I was thirty, I was still single. I bought my first home (closed on my thirtieth birthday) and became a licensed foster parent that same year.

I had short term placements. It was hard to say the goodbyes. I learned that I was not an effective parent to older kids as I definitely was more in the parent/friend zone and was not good at setting limits. I told my foster parent case manager that I probably needed to foster a younger age.

So, back to that Thursday, fifteen years ago.

I received a phone call at work that afternoon. My foster parent case manager told me that she was in desperate need of a foster parent and no one had said yes yet. She started the conversation by stating, “Remember how you told me you wanted to parent younger children?”

My heart started to pound.

“I have three children who need an immediate placement,” she continued. “Because they are a sibling set of three, I have been unable to find a placement. Will you be willing to take them?”

I was in a bit of shock. I asked her the children’s ages.

“They are ages three, twenty-two months, and four-months old. We are unable to locate the baby at this time but we need you to meet the girls as soon as we can.”

I asked her their names. At that point it became real. There were three little ones with names that needed someone. She told me that if I was unable to take them, they would have to separate them and she said she did not want to do that.

I did not want that to happen. I said, “Yes.”

I finished my work early for the day (thank goodness I had put in overtime earlier in the week) and I drove to the designated place we had agreed on. It was a gas station. I met my forever girls at a gas station. It was also the same gas station that I had first stopped at when I first arrived in Knoxville.

I don’t remember who arrived first, whether it was me or the driver with my girls. But what I do remember is the faces of two little terrified girls in the back seat of her car. They looked like children of war; they were shell-shocked. They literally had no belongings. The workers and police had to find them clothes because they literally had none.

There were these two little girls; one whom had just turned three and one who was only twenty-two months old who had NOTHING in the world. I have no recollection of the social worker’s face but those two little girls’ faces at that moment was forever imprinted in my memory and my heart.

The worker told me they still had not located their brother but that there was an Amber Alert and the police had issued kidnapping warrants on the birth mother and boyfriend (that story will continue tomorrow).

I moved the girls to my car.

They had no earthly possession. They had no favorite blanket. They had no favorite stuffed animal. The worker gave me two emergency kits (quilted blankets with a few other comfort items) that a church had donated to the department (BTW… an excellent and needed ministry).

I do not remember leaving the gas station with the girls.

We drove the short distance to a brand new Wal-Mart. I say this every year because it is exactly how I felt. If I could have bought them the moon at that point, I would have. But I was a “poor” social worker on a limited budget.

The girls sat in the cart as we went through the store, their eyes huge and in awe. But not once did they ask for anything. It was many years before they did ask and when they did, it was for so little.

We arrived to my home. I had a room, decorated in Raggedy Ann and Andy (much to the embarrassment of previous foster boys) that was a perfect fit for these precious little humans. I tried to feed them but learned they still were on bottles. I was so thankful I had those on hand.

I bathed them and put them in their new pajamas. The girls, especially Sydney, suddenly came to life. At only twenty-two months, she was talking paragraphs. Her speech was so impressive. And I learned that Katyana had her own language that Sydney interpreted.

They were both so worried about their little brother. They were three years old and twenty-two months (NOT EVEN TWO) and they were worrried about their brother.

Katyana spent some time memorizing my house set up. I realized soon that she was the “mother” at the age of just three. She had just turned three and was taking care of the other two. She memorized where everything was. Sydney translated and talked.

I tucked them into their bed. I had a double bed and had to buy rails that evening.

I read them stories and surrounded them with every Raggedy Ann and Andy doll I could find. I stayed with them until they fell asleep.

And then I went into nesting mode.

I washed all the baby bedding for the crib even though it was clean. I went through my assortment of clothing I had collected for differing ages of kids through thrift stores and really cheap deals through the past few months.

I called my parents who were in China so they were twelve hours ahead of me.

I did not sleep.

I cleaned.

And morning came. I had to work as I had things that could not be put off. A friend agreed to watch the girls for me.

I went to change the girls from their pajamas and Sydney started crying. She did not want to take off her pajamas until she saw that she had new clothes to put on.

I did their hair.

I fed them their bottles and tried to feed them food.

And then we left.

But I get ahead of myself. Because that story is for tomorrow.

Today, March 7th, is MY GOTCHA DAY for my girls. It is the day they came into my home and my heart. It was the day that would make me a mom; not just a foster mom.

It was the day all my dreams were realized.

To be continued March 8th.

💜 HAPPY 15th GOTCHA Day Sydney and Katyana. I am forever thankful for this day. It was the day that all my previous dreams and experience met with two girls that would forever impact and change my life.💜

A very precious life who intersected our lives. Please pray for this family who lost this precious gift.

From the Heart


At 9:30PM on August 21st, a brave little warrior from this earth was welcomed as a strong and valiant champion into the arms of Jesus.

Our son is gone from our arms, but his life has imprinted each of our hearts with more love than can ever be spoken.

Our family grieves with deep, deep grief. A loss like this is more than our hearts can bear but we lean on the One who created us all.

It was like we were a wheel. Christ as the hub, we the spokes, but Mattie the felloes that held us together, shaped us, set us on course.

He moved us. His life centered us and connected us as a family more deeply than words can express.

On August 21st our lives changed forever….

Mattie has been doing so well as you know. We had a marvelous family vacation, he has been vent…

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My three Ragamuffins - LOVE THEM!

My three Ragamuffins – LOVE THEM!

I have never been traditional in the sense of being a “mother.” When I worked at a children’s home during college, I got my first sense that mother’s day wasn’t always a “happy, sweet day.” Following the rules of the children’s home, I had to take the children who were wards of the state to church. I received my first Mother’s Day card that day. I was only twenty-years-old and knew that card wasn’t meant for me but little James had no one to call “mother” and I was the substitute of the day. He is far from alone. I spent the three years after college being a “substitute” mother to so many precious children at a Children’s Home in California. I saw what my cottage of girls went through when it came to celebrating Mother’s Day in the schools. We had the option of making other plans for Mother’s Day and Father’s Day by avoiding churches. The sting was too hard for some to bear.

Since then I have been in so many different situations where it has been so hard to hear the words “Mother’s Day.” Friends who have lost their own mothers to death or having dear friends who don’t have mothers due to their mother’s life choices or abandonment, I have learned not to take my mother for granted. But this day can be a bitter reminder for so many.

The hardest “Mother’s Day” for me was in 1997. I had a miscarriage the previous September. I was unmarried (*shocking*) and I suffered through alone with only few friends because the judgment was so severe from some I had told. It was so hard suffering in silence and I am so thankful now that I don’t have so mourn her loss in private. My first child was Emily Grace. My children are comforted they have a sister in heaven who is with Jesus and has welcomed loved ones and pets that have gone on before us.

In 2002, I became a foster mom with three little ragamuffins. The first mother’s day was awkward because I was “only” the foster mother. However, I was thrown up on and had sick kiddos and ended up in the ER in the afternoon for a baby with pneumonia. I learned that day what Mother’s Day is truly about; a mother taking care of her children. There were no pomps and circumstance for me that year. And I imagine it was a hard day for the birth mother as well.

By Mother’s Day in 2004, I think I had learned what Mother’s Day for a single parent looked like. If I wasn’t going to do it, it wasn’t going to happen. I bought myself an new oven that year that made cooking for my family of four so much easier.

After adopting my children in late 2004 and moving in 2005, a dear daughter-friend, Abbey, would sneak into my house and awake my children and taught them to cook simple breakfasts in bed for me while making crafts with them to present to me. She did this several years. By her example, the kids continue that tradition to this day.

Mother’s Day is truly a day for my children. It is the one day out of the year they will set aside their differences and work together to honor me. There is no price tag on what they give me because they give me their hearts. I am blessed to be their mother everyday; not just today. But I love seeing them on this day because I do see a glimpse into who they are becoming. And I see a bit of their Daddy (God) in them especially on this day.

I pray my kids will always have their “Father’s Eyes.

Sydney’s 13th Birthday Present Gift… “My most favorite present ever.”

From the Heart

There is an ache in my heart every year on Aiden and Emma’s birthdays. A pain. A longing.

A wishing with all my heart that I could have been there to hold them on the day that they were born.

To whisper in their ear about beauty and hope and destiny and mostly LOVE.

I wasn’t there.

But He was.

He was there…

“For You created my inmost being;

You knit me together in my mother’s womb.

I praise You because I am fearfully and wonderfully made;

Your works are wonderful,

I know that full well.

My frame was not hidden from You,

When I was made in the secret place,

When I was woven together in the depths of the earth.

Your eyes saw my unformed body;

All the days ordained for me were written in Your book,

Before one of them came to be.”

Psalm 139:13-16

This is…

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A friend of mine said these words today as he described the anniversary of the passing of his beloved mother.

“Time is as fragile and moving as life… …and it is hard to realize that a year has passed… …appreciation is more valuable than gold itself…” Gary Daniels

Those words resonated with me in deep place of my soul. Maybe because this is the time of year I think so much about the life, death, and Resurrection of Christ. Maybe it’s because a dear sister-friend passed away around this time of the year two years ago. Maybe it’s because I know of so many children who are facing huge medical obstacles right now and some have not made it. Maybe it’s because I grieve so much for the beginning childhoods of my children when I wasn’t their mother and I see the impact and sadness that still lingers within their souls. I think maybe it resonated because of all these things.

A kindred spirit mother-friend of mine recently walked through a harrowing journey with her two-year-old son. I am so overjoyed her story has a happy ending. My kids and I were in such prayer for a happy ending. But the journey of Tracie’s family brought up so many things I have been feeling lately. And my friend Gary, as mentioned at the beginning of this post, seemed to sum it up his quote “Time is as fragile and moving as life.”

We live in a world where everything happens immediately and instantly. I love Facebook. It is my mommy safe haven, my family journal, my photo album, a place I learn how to be a better mother, to eat healthier, a place I am challenged politically and sometimes intelligently. But sometimes I see how quickly I move from saying something somber to then posting a funny caption. Is it possible to go through the emotions that quickly? I really realized this while my kindred spirit mother-friend was in one of the scariest places a mother can be emotionally (facing childhood cancer) and how overcome with emotion and compassion I was that I backed away from Facebook (except for all the updates and dialogue with her). I didn’t want a distraction that would keep me from feeling the passion to pray fervently without ceasing. I was grieved that in the past I have said that I would pray for some people to realize that I was distracted by the next funny thing I saw and forgotten to be in prayer.

I keep singing this song in my head. It came out of the blue and I have been singing it to myself for a week just reflecting on the words.

Brother, sister, let me serve you,
let me be as Christ to you;
pray that I may have the grace to
let you be my servant too.

We are pilgrims on a journey,
and companions on the road;
we are here to help each other
walk the mile and bear the load.

I will hold the Christ-light for you
in the night-time of your fear;
I will hold my hand out to you,
speak the peace you long to hear.

I will weep when you are weeping;
when you laugh I’ll laugh with you;
I will share your joy and sorrow
till we’ve seen this journey through.

When we sing to God in heaven
we shall find such harmony,
born of all we’ve known together
of Christ’s love and agony.

Brother, sister, let me serve you,
let me be as Christ to you;
pray that I may have the grace to
let you be my servant too.

Words: Richard A. M. Gillard , 1977

I want community with my friends and I want it to be authentic. I want to be a Christ-servant to my children, my family, my community, and to my friends. I want to laugh when my friends laugh. I want to weep when my friends and community are weeping. “I want to share your joy and sorrow until we’ve seen this journey through.” I want to be real and journey with you through this life.

So, how do I do this in an age of Facebook with instant notifications that cause such a wide array of emotions that can cause me to feel sorrowful, happy, silly, and angry in just a matter of minutes? How do I convey to my friends that I want to be a Christ-servant to them? I want to reflect agape love in all that I do including what I do online. But do I reflect that when I am telling a friend I am fervently praying for them yet two seconds later post a funny video? This is where I am challenged.

One reason I love Facebook is that it keeps me in community with those I love but because of schedules or distance, I can’t see in person. Phone calls are just hard to handle with three children who need my attention. I cherish the time I have with those I hold close when we are together in person but those times are so hard to plan. Facebook allows a temporary fix that is on my children’s timetable. I love Facebook because it archives my family’s life and I can create photo albums in an organized way that I have never been able to successfully achieve offline or in another format. I love that I learn so much and have been challenged to think outside my little box because of information posted by friends with differing viewpoints on Facebook.

But I truly think that “time is as fragile and moving as life”. Facebook operates on a non-human timetable. Information can hit my thoughts and I move on before I have processed the emotion. And I am an intuitive-feeler. Maybe this is just a struggle for those like me.

I am going to consciously slow down. But I am not going to quit Facebook. I am going to challenge myself to not speed through the lives of my friends and family in the newsfeed. If you post a need, I am challenging myself to take time to hear you, to “see” that you’re not invisible, and to pray. Forgive me when I have not wept with you. Forgive me when I haven’t spoken the peace you needed to hear. Our time here is fragile and it is moving as life.

And to illustrate because I think blog posts are “super-awesome” when accompanied by photographs, I am including a recent picture of my children to remind us all of time and how fragile one day is. Each day our children grow and we can never go back and as Gary also so wisely quoted, “Appreciation is more valuable than gold itself.”

Sydney, 12 years and 331 days old; and Katyana, 14 years and 74 days old.

Sydney, 12 years and 331 days old; and Katyana, 14 years and 74 days old.

Ethan, 11 years and 166 days old.

Ethan, 11 years and 166 days old.



June 2019
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