Persistence and Purpose | 2017 Goals

First off, yes I know it’s a little late in the month for this post, but persistence and such. I am trying to take my word of the year to heart and power through some of the posts I had planned to complete before the kiddos got sick. Just bear with me here.

Now although I am a very avid list maker and planner lover-extaordinaire, I have never been a really big fan of New Year’s Resolutions. I do feel like the new year is a perfect time to start anew with a clean slate and all, but I have always found something cheesy and almost unlucky about them. Almost as if just by making them you were setting yourself up for some sort of cringeworthy failure.

But this year as the calendar turned on 2016 I couldn’t help myself but to think forward to 2017 and beyond. What did I want out of my life, my finances, my blog? Where do I want to be in five years? Ten years? And what can I do this year to push myself towards those goals? It was these thoughts and questions that led me toward the list below.

It is not a hard core to do list, I will not crumple up and feel the weight of failure if they do not all happen, or even if none of them happen. They are simply goals to move towards, but also a path to follow to the success I hope to find in my future.

So without further ado…

2017 Goals

Personal Life:

My main goal for my personal life in 2017 is to simplify. This means less things, less commitments, less idle fillers that get me through the moment but do nothing for me in long term. In order to do this I have to find a way to find out what things in my day are the most important to complete and create a routine that makes them doable in a timely manner. This will give me time to not only get things done, but also time to spend on the things and people I find most important-my family and friends. I want to be present for my husband and my children, I want to spend time making memories that will last our lifetimes.

Business:

This goal is a little more concrete. I am a very avid dreamer, but I often have a hard time with follow through. There are so many things that I want to do, but I tend to give up if it seems my project(s) won’t turn out as perfectly as I had imagined. I am told this is a symptom of OCD, but that is neither here nor there.

For awhile now I have been really thinking and looking deep inside of myself to find out that age old question of what do I want to be when I grow up. This might have better suited me before I got the college degree I now hold (and have never used professionally) but alas, it is what it is. As I thought, prayed, and reflected during this time I was able to lay out dreams that involved goals for both the near future as well as where I’d like to be later on down the road. It was very freeing actually, to have a clear(er) path I want to follow. For example in the future, when are completely debt free, I’d like to invest in real estate. But not just any real estate: I want to buy old houses, restore them to their glory, and both sell them and rent them out. But that is years down the road.

In the present time I would like to focus on this blog as a business and not just a hobby.

  • I want to work on my writing skills and steadily put content on here at least three times a week (Monday, Wednesday, and Friday).
  • I want to upload videos to my main YouTube channel at least twice a week (Tuesday and Thursday).
  • And, after a lot of thought and contemplation, I have decided I want to upload weekly vlogs on my vlog channel as well (Sundays).
  • I want to reopen Papa Publishing, a company I started last year that sold book inspired t-shirts, and I want to expand it to sell printable, prints, and eventually other items.
  • Finally, and the biggest goal of all, I want to finally finish a novel I started last year. Something that no one else may ever want to read, but it’s an item on my bucket list that I feel it is time to check off.

Giving Back and Advocating:

This goal is a little trickier than the others, but it is one of the ones closest to my heart. This year I really want to focus on the need for cannabis to legalized. I want to help give the chance that Austen has to others, not just kids with epilepsy, but everyone who could benefit from this plant. I’m not sure how exactly I will go about this, but I am praying and thinking, and I know it will come to me eventually.

***

What is your feeling on New Years Resolutions? What are you hoping to accomplish this year? Comment below and let me know!

Persist

Persist:
per·sist
verb
1. continue firmly or obstinately in an opinion or a course of action in spite of difficulty, opposition, or failure.
2. continue to exist; be prolonged.

After several days of thought I have finally come up with my word of the year, persist. You might find this odd, and counter productive.  I thought so too for awhile because I feel that the last couple of years I have had no choice but to persist through the hard times that were thrown at us.  This year I will continue to persist, but this year I have decided to do so intentionally.
I do not want to just hang my head and power through life anymore, I want to face my challenges head on with a power and a purpose.  That’s what persist will mean for me this year.
And my need of persistence started almost as soon as I came up with the word. Filming this video yesterday took me over three times as long as I had planned for it to.  There is a lot of crying in the video, there was a lot more when I kept pausing the camera.  There is a lot of repetitiveness and a lot of blinking towards the end (not sure what was up with that).  But I did it, I powered through, and I even edited it last night while cuddling a screaming Atlas to get him to go to bed.
Persist is definitely not just a word I want this year, it’s a word I need, and that I want to embrace fully.  So here’s to more videos, more blog posts, and to living a more intentional life.
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An Open Letter to the Parents of a Child Recently Diagnosed with a Rare Disease

Dear Parent,

I do not know you, and I can’t even really say that I know how you feel, but I know how I felt last May when we received our daughters diagnosis. I thought why us? Why me? Why her? I wanted to cry and crawl into a tunnel and disappear in my despair. In reality I cried on and off for several days, ignored a lot of phone calls, made a few others, and watched my babies every single move.

Was that the healthiest way to cope? Probably not, but it got me through. And as time went by I learned to pick myself up and as time went on the reality of dealing with the disease eventually became second nature. Do I still hate Dravet? Hell yes. But I have learned some important realities of dealing with a child who has a rare disease, realities that I learned on my own but I want to pass on to you.

Knowledge is power.

Recently it was announced that a new study would take place across 44 hospitals in the US in regards to which of three anti-seizure medications would work best to treat a status seizure. The point of the study to is create a national protocol for emergency room doctors to follow in regards to treating these kinds of seizures. Sounds decent enough, right? The problem was that this is a completely blind study and federal regulations allow it to be done without patient or parent approval, meaning the doctors do not have to tell you they are doing the study on your child before they do it. If that isn’t scary enough one of the three anti-epileptic drugs in the trial (fosphenytoin) is a complete no-go for kids with Dravet Syndrome, instead of stopping a status seizure in a child with Dravet it will actually make it worse. Thankfully they have come out with a list of hospitals that are participating in the study and IF you know about the study beforehand you can get an bracelet for your child to wear letting the doctors and emergency room staff know that you have declined the study.

I am so grateful to know that this option is available for us, but what if I didn’t?

You might be a parent like me, who already googled and searched through the information about my child’s diagnosis before the test results came back. You have an idea what your child will face in the days, weeks, and years to come and you continue to frantically search more information each day.  Or you might be the complete opposite, you chose not to look up the disease before you knew the results, you didn’t want to scare yourself with ‘what ifs’. Both options are totally okay, but remember that you can never know too much about your child’s condition.  In fact, the thing with rare diseases is that you will probably end up knowing more about your child’s condition than many of the professionals that you will come in contact with. You will be the one that is up to date on new trials and therapies that could benefit your child, and you will be the one that is often informed of studies like the one above in which you are the only one who can keep your child’s best interest in mind. At this point being educated about your child’s disease is not an option, it is a must.

Be your child’s advocate. 

Chances are that your child will see quite a few people throughout their medical journey.  Doctors, therapists, specialists, etc. And it is not always easy for them to connect to you and your child because, well lets face it, they see a lot of kids every day. Some, like my daughters neurologist, will focus on kids solely with your child’s condition. But more often than not they might see thirty different kids, with thirty different issues coming in and out of their office each day. They don’t always know all the nitty gritty details, and it’s not that they don’t care, it’s that it is impossible for them to do so.

But those details could make or break your child, and it is up to you to advocate. If your child is put on a new med that your doctor seems very excited about, but you see it having adverse reactions at home it is your job to be your child’s voice and talk to the doctor about a change. If you think your child would benefit from a certain type of therapy, or you a new piece of medical equipment at home speak up! You don’t have to be rude, but you also cannot expect for the doctors to know what is going on unless you let them know.

Use the power of social media to your advantage.

Social media is a great way to get your child’s story out there for others to pray and think encouraging thoughts, we set up the Hope for Austen page back before we ever moved from Texas because we had so many friends and family members wanting to be kept up to date.

But what I love even more about social media is my ability to connect with other moms going through the same thing. Facebook is filled with pages and groups directed towards parents of children fighting similar conditions. If your child’s condition has a name, I would be willing to be that there is a group out there for it. These are awesome because these are the people who know exactly what you are going through, they can help you through the ups and downs of day to day living. From my experience it is these people who will be your biggest supporters, and will pray the hardest for you on your bad days.  Which brings me to my last point…

You matter too.

This is probably the hardest point to remember of my topics today, but I speculate that it is the most important. I read a blog post earlier today that spoke about how for parents of special needs kids often do not just have PTSD, it’s more like TSD because the trauma is continual, it never goes away.

I remember the first time Austen was in the hospital, she was intubated and in the picu at Dallas Children’s.  On day two or three of her stay they were taking her back to get an MRI as well as CT scan to let us know what, if any, damage had occurred from her big 35 minute seizure. So far her dad and I had only left the room to eat or take a quick shower, but never left the hospital itself. In fact, when we did leave the room it was for as short amount of time as we could stand because we did not want to leave her alone. On this day the nurse came in and told us that they would have Austen out of the room for several hours. We could stay in the room she said, but she really encouraged us to leave.  To get out and go to lunch, to take a walk, to breath. We went to Denny’s and then to Target to get Austen a toy. In the Target checkout line I broke down bawling and the poor cashier had no idea what to do with me.  It was then that all the trauma, all the stress came crashing down on me.

You matter too.  You matter too. One more time for the people in the back YOU MATTER TOO. As a parent in general it is very easy to wrap ourselves into our kids lives until we eventually lose who we are without them, this happens sevenfold when our children have special needs. But you must take care of yourself, if for no other reason than if you lose your sanity who else does your child have?

So talk to a therapist, join a support group, take that respite care that the hospital is offering you. Get a pedicure, take a nap, heck even go grocery shopping by yourself. Do whatever it takes to keep you as 100% as possible, because you absolutely cannot make it unless you take care of you too.

 

Dear parent, I know right now you are scared, and I do not know if that will ever go away. I know that the road ahead of you is probably a hard one, and definitely a tiring one. But I also know you are not alone, you have joined a club that no one ever wants to join, but whose members are some of the greatest and most inspiring people in this world. I want you to know you are in my prayers now, and will continue to be in them until I draw my last breath. You are not alone, nor will you ever be.

With Love-

Meagan

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Sick Days

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Atlas is a very energetic little boy.  He is always on the go, building things, taking things apart, and just generally making a mess.  Sometimes I find myself wishing he had an off button, or even a pause button.  It often seems like nothing could ever slow him down.

And then he gets sick. And through all of the coughs, sneezes, and naps I find myself missing my energetic little boy.  At first he always tries to deny the existence of the bug.

“I’m not sick, mama.” he will say through watery eyes while wiping his nose with his sleeve.  His little eyes are already red and puffy, there’s no denying what’s coming.  I know that in just a little while he will give in, and quietly whisper in my ear “Mama, I think I need a nap.”  That’s how I know it’s real, that he has admitted defeat and is really, really sick.  Atlas never wants to nap.

Unfortunately for Atlas this sick day is also falling on the first good snow playing day of the year. I can’t count how many times he has looked longingly out the window today and asked to play for ‘just a little bit’.  And now I can hear Austen coughing from the other room as well: two runny noses, two coughing babies, and lots of snuggles for mama.

I know there isn’t much I can do.  The soup is on the stove, our diffuser is up and running, and they have been thoroughly doused in my favorite essential oil blends from Plant Therapy’s Kid Safe line. We are watching, waiting, and have our seizure stuff out and ready to go.  Hopefully we won’t have to use it though.

In the meantime it will be couch cuddles, Thomas & Friends in the dvd player, and I quiet afternoon with my littlest littles.  Maybe this afternoon we can muster up the energy to play with some homemade play-doh, and hopefully tomorrow we will all be back to our energetic and mess making selves.

 

2017

“Dost thou love life? Then do not squander time, for that’s the stuff life is made of.”

-Benjamin Franklin

I love quotes, sometimes no matter how much you try your brain refuses to find the right words to express your thoughts.  That’s where quotes come in, when your brain cannot form the words, often times others have already done the work for you.

Benjamin Franklin was right, time is what life is made of, little moments knit together into minutes, hours, days, and weeks.  We complain that times moves to fast, but we rarely stop to cherish it, to appreciate it while it’s happening.  It’s very selfish of us really, like a toddler who doesn’t realize how hungry he is until his mom takes away his dinner when he refuses to eat it.

I’m not going to lie, 2016 was a hard year for us, and for a large part of it I wondered if it would ever go away or if I would have to give it a good sucker punch in order to escape into 2017.  Over the year we dealt with around 30 seizures, three hospital stays, over five different specialists, two layoffs, a move to a different state, and then another move because our apartment was not up to par (it flooded every time it rained, which is pretty often in Colorado summers).  Our family has been under a lot of stress, and for a large part of the year my marriage was very strained.  Out of 366 days in 2016 I probably spent 360 of them waiting for it to be over.

Last week Austen was having one of crying days were she cries, screams, and nurses all day and does not want to do anything but touch me.  I was touched out, stressed, and ready to cry myself.  But then, in the midst of all of that chaos, something happened.  Austen stopped crying, she looked at me, smiled, and gave me a big hug.  It was then, in that tiny little moment, that it was all put into perspective for me, and I realized all I had missed out on in the past year.

All the hugs, the kisses, the cuddles I had failed to appreciate.  All of the I love you moms, and you’re my best friends that I had forgotten.  Yes this year has been stressful, and there is no guarantee that 2017 won’t be either.  In fact, it is almost guaranteed that it will be stressful in some way, it’s own way that we have yet to discover.  Our life is not easy, but whose life is really? We all deal with the struggles and hurdles of day to day life.

But these moments with my kids I will never have back, and no matter how stressful or discouraging 2016 might have been these moments made it worth it.  These moments give me hope, they give me meaning, they give me a purpose.

So here’s to looking back at 2016 and seeing the good, and moving into 2017 determined to appreciate them in the moment.

Our America

Today I am sad, I am scared for America; my home, my family, my future.  I am not sad necessarily because Trump won, I have looked deep down into my soul and really believe I would have been just as sad even if the other party had taken the victory.

I am sad because this election has brought out the absolute worst in our people.  One nominee opened the floodgates of hate, showing many people’s true colors in regards to anyone who is or thinks different than them be it their race, religion, economic standing, sexual orientation, or even their gender.  I have seen so much hate, so much animosity spewed over social media this past year and it has made me look at many people I love and hold dear with a new set of eyes.

Does every person who voted for him see with this set of eyes, believe and condone this level of hate? No, I do not think so.  Some of the people I love the most voted for him, and I have searched in my heart to see if I can imagine them being filled with this level of darkness.  I can’t.  But I fear they are the minority in his followers, and the majority is what my nightmares are made of.

The other half saddens me too.  The ones who do not care that it is not her voice that they will be standing with, instead it will be ‘big money’; the lobbyists, the corporations, the foreign entities that scare me shitless that will be running this country.  Their money paid for her campaign, and their money would pay for the policies she would fight to put in place.

And I’m not just sad, I am angry.  I am angry at both sides.  There are over 300 million people in this country, and these are the two that we decided to choose between.  I am mad that no matter how often it has been proven that a two party system is absolutely ridiculous and even harmful to our nation that we insist on keeping it.  I am mad that because I chose to deviate away from that line of thinking I am told that my vote must have been a protest vote, and that I somehow harmed my country by doing so.

Here’s the thing, I don’t vote for the people.  I vote for the policies they are going to put in place.  I vote for what I feel our country needs, and what I feel would be best for me and my family.

That means no to big money.

That means yes to universal healthcare.

That means yes to equal rights and equal freedoms no matter your race, religion, sexual orientation, or gender identity.

That means yes to a plant that is saving my babies life and could very well save countless others.

Did the candidate I chose tick off all of those boxes? No, but that candidate checked off all but one.  Is the perfect candidate for me out there?  He was, but unfortunately he asked me not to vote for him and I could not in good conscience vote for who he asked me to.

So here I am: scared, angry, sad. And the one thing I am doing is praying lots of prayers, for the next for years and what they will do to the future of the land that I love. We are an America founded on immigration, founded on freedom, founded by refugees: the tired, the poor, the huddled masses.  And I hope we never forget it.

1 in 20,000

1-in-20000

November is epilepsy awareness month, a whole month devoted to spreading awareness to this awful condition that effects 1 in 26 Americans. An estimated 65 million people worldwide are affected by epilepsy and 2/3 of those people do not have a known cause to their seizures.

In Austen’s case we know the cause, an SCN1A mutation known as Dravet Syndrome, the condition hits 1 in 20,000 people worldwide. In kids with Dravet Syndrome seizures tend to start before or around 6 months of age, they start out as tonic clonic (grand mals) and then the child eventually starts to develop new types of seizures in their second year of life. Dravet patients are characterized by having status seizures, a seizure lasting over five minutes, that are notoriously hard to control and resistant to anti-epileptic drugs. Most Dravet kids end of being severely cognitively delayed and many end up being somewhere on the Autism Spectrum. Dravet kids have a 16-20% chance of dying before the age of 20.

Dravet Syndrome is awful, Dravet Syndrome can kiss my ass.

As I write this I am looking at my 17 month old baby; this baby who is completely cognitively normal. She walks, she talks, she sings, she plays, she climbs, she socializes. I am looking at this baby who earlier today was running, laughing, and getting into trouble but is now asleep and exhausted thanks to a non-convulsive status seizure she had right after her bath this evening. Thankfully THC stopped her seizure, but it is taking more and more to stop them each time. Today I almost gave up and brought out the Diazepam (a gel form of valium) but she thankfully stopped seizing right as I was about to administer it.

My husband keeps telling me to stop being pessimistic. He is convinced that THC and cannabis are going to be a miracle for our girl. Maybe he is right, maybe it will be. I hope it is. But sometimes it’s easy for the negativity to take over. For the anger and the bitterness to bubble up and come to the surface.

You see, I am mad, I am angry, I am devastated that this condition is ransacking my baby. I hate that she has to suffer, and I hate that no matter what I do I can’t seem to stop the seizures completely.

Tonight I feel scared and I feel defeated, but tomorrow is another day. Tonight I might cry, but tomorrow I will pick up the pieces and continue this fight to help my baby.

I will do it because she deserves a chance, she deserves hope, and she deserves to have people in her corner fighting to give her those things.

And if I won’t do it, who will?

Who Am I?

Over the last few months I have been going through an identity crisis of sorts.  I have had a really hard time reconciling what I have been told I should be as a mom, a writer, a Christian, a blogger, etc. with what I really am inside.  So I’ve taken some time to write how I see myself, the things that are defining me right now.  You might not agree, and that is okay. But this is me. This is who I am, and I am no longer ashamed to admit it.

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I’m a product of hippies and southern belles

A mutt in every sense of the word

Teaching and writing run through my veins

And the Red River clay clings to my soul.

My ancestors were pilgrims and free thinkers

Generals, prostitutes, and judges.

Each gave me something unique,

And filled me up, drop by drop, to make me whole.

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I am an American.

A Daughter or the Revolution, and the Texas Republic.

I love my country with all of my heart,

But I am scared for us too.

I believe in socialized healthcare and a flat tax for all.

Because I believe we were all created equal,

And our economic status should not determine our access to healthcare,

Or determine what percent of our earnings we give back to our nation.

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I am a daughter of Christ,

Forgiven of my sins.

But I’ve learned to focus more on the red words in my Bible,

And not the absurd expectations society says I must meet in order for my faith to be real.

I believe in a world were my privileges and rights,

Are not defined by my race, gender, or sexual preference.

I believe that our forefathers built our nation on the freedom of all religions,

And not just the one I belong to.

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I am a feminist.

Not because I believe all men are rapists, or that I am superior in any way.

But because I believe that I am equal.

And that my anatomy should not subject me to lower pay and less respect.

I would rather befriend a pot head than an alcoholic,

Because marijuana doesn’t make you go home and beat your wife.

The only thing I need to protect from pot is my Cocoa Puffs,

And cereal can be replaced, but people cannot.

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I am a mother.

My heart belongs to the three little souls who fill my heart with love,

And my days with chaos.

They complete me, in every sense of the word.

I am an advocate and a dreamer,

A writer, and sometimes a screamer.

I am far from perfect, and I don’t have all the answers.

I am me, and I am learning to not only be comfortable in my own skin, but to embrace it.

 

Traumatizing Mom Moments: Been There, Done that

Addi The Moogie Traumatizing Mom Moments

Traumatizing mom moments, they are like bad habits.  We all have them.  I’ve been pooped on, peed on, and puked on, in public, by all three kids.  I’ve been at the center of tantrums in the middle of the Target checkout line, and I’ve been stared at in restaurants while my child turned to the other table and asked to sample their ketchup (okay, that last one didn’t really happen, but I’m sure it’s happened to someone).  The point is that in my seven (almost 8!) years of mommyhood, I have dealt with a lot  at the hands of my little spawns.  By far though, the most traumatizing mom moment that I have experience so far though was when I lost Addi.

Yes, you read that right.  I lost Addi.

It was awful, it was traumatizing.  It was something that many moms would probably not want to really put out there for the entire world to read.  But I know I am not the only person it has ever happened to, and I know I won’t be the last.

It was about three years ago at the Pearl Harbor Commissary.  Addi and I were leaving the store and headed out to our car.  Addis always, and I mean always, walked directly behind me and my big pregnant belly as we made our way to the parking lot and it’s like the one time in her life when she is ever quiet routinely, so I didn’t even think about the lack of noise as I made my way to the car.  I unlocked it, and turned around to lift her into her seat like I do every. single. time.  But this time she wasn’t there.

Now I am sure you can imagine the panic I felt that afternoon.  I promptly left all of my groceries and the buggy by my car as I waddled like a bat out of hell towards the commissary once again, yelling her name every few feet.  I got a lot of looks, but not one person out of the bajillion people in the parking lot stopped to ask if everything was okay or what I was yelling about.  In fact it wasn’t until I had made my way to the front of the store that someone stopped me and said the best words that have ever graced my ears “I think she is over there.”, as they pointed to a lady with two kids standing in the midst of all of the chaos.  My little girl was crying and clinging to her hand, but she was there, and she was okay.

It turns out that when we walked out of the store Addi had seen two kids about her age standing next to the bushes outside of the commissary and wandered over to them to see what they were looking at.  Addi never thought to tell me where she was going (or ask it if was okay).  Within seconds she realized I wasn’t there, and thankfully remembered what I had told her to do if she ever got lost.  She found another mama, who had kids with her, and told her what had happened.

I don’t remember that mama’s name, but I remember the look she gave me.  It wasn’t one of disdain or annoyance, instead it was one of understanding and shared sisterhood.  She hugged me while I cried tears of joy, and told me she had been there, done that.  She told me not to be too hard on myself, and to go home and snuggle with my baby.

I will never forget that mama, and the compassion she showed to me in what was one of the worst times of my life to date.  Often times I think that many of us think of motherhood as a competition.  More than once the thought has crossed my own mind that at least I am not that bad, while comparing myself to another mother and her actions.  But it isn’t fair, and it isn’t right.

None of us are flawless in our motherhood journeys, none of us are perfect.  We need to lift each other up instead of push each other down, we need to realize we are all playing on the same team here.  Maybe if we were to do that, not only would we benefit from it, but our kids would to.

An Ode to the Mom Bun

An Ode to the Mom Bun The Moogie

This post was originally posted on my former blog, The Moogie, but in honor of Mother’s Day yesterday I decided to post it here too.  For all you moms out there, you are loved, you are appreciated, you are important.

I see you over there. Your hair pulled up, not because it is the latest fashion, or even because it is ‘messy cute’.  It is based more on time and ease than how many Pinterest pins it would get.  No, your hair is not inspired by magazines and movie stars, it is inspired by the messes and spills, cuddles and hugs that make up your day.

At 5:00 a.m. it is pulled up in a sleepy haze while you wake up to start your coffee, make bottles, and change diapers.

Maybe it’s tossed back after breakfast when your bending down to sweep up the scramble eggs for the third time this morning; or as you lean in for snuggles and a story as nap time draws near.

At 3:00 it’s thrown up while you run to your child on the playground, and again at 6:00 when you splash and scrub your Little’s in the bath.

It comes in the form of a bun, a pony tail, and even a braid.  It’s quick, it’s easy, and you can do it without even thinking.  It’s automatic and engrained, a testimony to the love and devotion you put into the day’s tasks, both menial and substantial.  It’s a part of your uniform, mini vans and yoga pants optional.

It might not be vogue, but it tells a story; and that mama, is not just amazing, it’s inspiring.