Life. Bullshit. Coffee? Friendship!

It has been a long time since I posted. Honestly, it has been a really loooong time since I have written anything. At all. Well that was not for monetary exchange. Life sometimes has a way of really curb stomping you after you have been down, once in a while. Like, things are hard and then life looks at you and just flips you the bird.

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FaceTime makes the distance less shitty.

My husband has been away since last spring. As a military spouse I count myself incredibly blessed that he is still in the USA and not in a combat zone. Problem is he is what feels like a million emotional miles away. The biggest issue is the timezone thing. We have “conversation lag”, we are eating dinner and he is headed to bed. However, I do want to thank Apple for the creation of FaceTime. It literally is life. We miss him a lot.

I am keeping it together. The website I work on is growing by leaps and bounds. The kids are doing well in school and seem happy or at least functional. The house is still standing and it is clean-ish. I made the Dean’s list at my University 2 semesters in a row.

That being said: I have felt like I was am drowning; like I am being sucked under. I can bounce off the bottom and catch my breath but I always get pulled back under.

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My kids like her best…

People keep telling me how in AWE they are of me. “How do you do it?! Five kids!” “You’re amazing.” I always laugh and say coffee. which is true. (if you’d like to donate to my Drive Thru coffee fund let me know)

I have NO idea how I am doing it. I just am. This is temporary. One foot in front of the other. I am barely doing it. It is a surface thing. Luckily my hair is purple or else everyone would see that I am currently aging like a President. Stress is a nasty deliverer of gray hair and fine lines.

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These three women are ROCKSTARS. Solid. Fabulous. And we have a pretty epic text conversation going at all times.

I am looking at my life and I. AM. BOWING. DOWN. To the moms that do this completely on their own. I at least have a voice on the other end of the phone telling me how pretty I am and how when he gets home I am going to get an extra-long momcation.

I appreciate my cheerleaders. I have really, during these past few months, learned the power of friends. Of a “tribe” if you will. If it wasn’t for the amazing people in my life I would not be able to stop sobbing while running errands.

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My sister is my best friend. How lucky am I?

They have fed me, they have watched my children in moments of crisis and just because I needed a break. They have proofed my papers. They have sent me funny memes. They have called/texted/shown up unannounced with caffeine just because they know that I am not good at saying: this is hard and I am not handling it well. They have taught me to create boundaries in my life and to focus on today.

My tribe spans the globe (lots of other military babes on this list) and just feeling the love and support at moments of stress has made me a better student, writer, mother and also friend.

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<3. Festival mamas.

I want to say thank you. But words will never fully express the gratitude I have for these amazing humans. I never knew that I could be so honest and incredibly vulnerable to a group of women and still be accepted. I always scoffed at the way some people talked about their friends. Then I got older. I got wiser and I got more comfortable with who I am as a person. I learned that to be a good friend to someone I needed to be open and vulnerable. This created a paradox. Not only was I able to become a better, more loving friend but I was able to find better and more loving friends.

These women are my tribe. They get me. They lift me up when I am down. They shit talk when I am crabby. They get my humor. And I get theirs. It is a place we can voice our crazy, our fears, our worries and not be judged. And we are all different walks of life.

That is the best thing in the world.

 

 

Then the Universe saw my poker face…

Well it has been a hell of a long time. I will be honest. I haven’t written because I am hiding. This past few months have been garbage. Like a smoldering, rotting, festering and really stressful pile of garbage.

-School
-orders (the husband is being called back for a while)
-work
-life in general can suck.

Even the fun stuff we have done has been shadowed by the stench of stress.

My kids… well a few of them… all got THE LICE.

yeah, I can see you itching already but keep reading if you have ever dealt with this because I am SURE you could use the laughs.

It all started in mid-January when my best friend and her family came over for a day. We had fun. Kids played. Grown ups day drank and we all had a good laugh over the silliness of the VR thing that they got and brought over.

Then the next day I get a phone call from the BFF about how her daughter had lice. That the kids in daycare keep getting lice and set it all on fire. It doesn’t matter how rich or poor or clean you keep your life: lice don’t give AF.

I live in an unnatural level of terror of lice. Something about the trauma of getting lice from a birthday party when I was six and having my mother comb through my hair from my new home of the bathtub for a week straight scared me for eternity. I lecture about hats, hairbrushes and try to keep the girls hair combed and tidy… tea tree oil for everything!

After mentally screaming. Check kids. No lice. Check them every day for a week.

Phew!

Then a couple of weeks later got a note from the Kindergarten (which is a petri dish. They are so precious but FFS they are also little festering monsters of runny noses, sticky hands and sand) that there was a lice thing: my kid looked fine but they need to let us know.

Phew! But we comb through and throw back-pack through the drier. Just in fucking case, ya’ll.

Now we were off to this big pretend-fun-for-the-family-before-husband-leaves-for-work thing in California. It is for a long 4 day “weekend”. SO we pack up the kids. We load up the mini-van and we drive to death by powerpoint. We decided that while we were there: DISNEYLAND! Woot! Planned the trip all set for the last day in California! PLUS, we can visit my sister who is just a hop skip and jump away!

WRONG.

This is where my kids DO get lice.

After 2 false alarms. They get lice while we are literally in a completely different STATE.

This, what is set up to be the greatest surprise we manage to pull off ever, is where the girls get THE LICE. Big scary adult ones! The kind that lay eggs that leads to full infestations!

of course.

SO. We spent 6 hours. Yes, that is correct: SIX HOURS at my sisters house washing everything they have been near. Treating their heads and my head and my husbands head and mentally screaming. 100 dollars in lice shampoo and untold hours combing through hair. For the record: my daughters both have longer hair. It is thick and Three has super gorgeous beachy waves NATURALLY. Which makes this process take 10 times longer.

FINALLY: After hours and hours of three adults combing through 5 children hair we raise our arms and say: I think we are good. I check the hubs. He checks me. I then check my sister. We are filled with cautious relief.

At least we caught them early. Only the 2 girls had them but they shared a bed. We killed every last (I think honestly it was only like 5 or 6) lice that day.

But the eggs… for fuck sakes… the eggs are the big problem. The shampoo doesn’t murder the eggs so you have to pull them out one by one. AND they are itty bitty and hard to find and Four hates sitting still that long.

She fusses and fidgets and we end up watching a hell of a lot of “lolirock” on Netflix. This show is trash, if you don’t already know. Zero substance but it made her zone out for the hour a day I combed through her hair.

Lice live for like 30 days. They are eggs (Nits) for like 5 to 7 days and then little babies for 5-7 days and then adults that lay nasty eggs for like 5-7 days and then they, like, retire or something and just make kids heads itch for 5-7 days. Then they die.

So, by doing exactly as instructed we have treated the kids every 5 days. Well… I shaved One, Two and Fives heads. And we seem to have stopped this before  it spiraled out of control

If this ever happens again I am going to just start from scratch. Shave everyones head and throw all the bedding, stuffed animals, car seats, clothes, dress up, barbies, bags and linens out in the garbage. It is all replaceable. My mental health is a little less replaceable…

It is always something here. But I swear to all that is holy I will shave Fours head if she ever gets them again.

Coffin-Siri’s Syndrome. Life with a rare diagnosis.

I have a million very vulnerable posts in my draft box right now. Things that are personal and raw. About myself as a mother and a wife and a human being. But they are raw and it is scary to share the things sometimes.

But I am working on being intentional and forward in my writing. And this is basically an out loud journal….

I am One and Two’s step mother. This is fact. Plain and simple. Their father was a package deal. But what I don’t talk about is the history of these amazing young guys. Especially One. We went through a very drawn out and ugly custody dispute, I am still wary to talk much about that period of time. To be under a microscope and so worried about the well being and ultimately the safety of children.

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But One, who is eleven years old now, has an incredibly rare genetic disorder. So rare that he wasn’t clinically diagnosed until he was 3 and not genetically diagnosed until he was seven because there wasn’t the technology to find what gene was broken yet.

One was born in early 2005 and immediately there were issues. He wasn’t able to maintain his temperature, he wouldn’t open his eyes, he was “floppy” and he had a lot of difficulty with nursing/latching onto a bottle. Young parents, a doctor that ignored any concerns they brought up (instead telling them “all kids develop at different rates”), a mother that refused to see the obvious, a breakdown of relationship, lives lived in a state of chaos lead up to a delay in him getting evaluated. 2005 & 2006 were hard years, especially when my husband walked away from his first marriage.

One was diagnosed with global delays at 15 months of age. About the same time his father and I admitted that this thing we were feeling was real. They moved into my apartment and I became a care taker for One.

One received close to 30 hours a weeks of therapy for years. Occupational, Physical, Music, Vision, Speech, Eating, General and so many doctors visits to find out “what was wrong”.

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Then we finally got an appointment with a genetic specialist. Dr. Teresa Grebe. His toes are weird and that is finally what ended up clinching a genetic clinical diagnosis. Coffin Siris Syndrome.

We had never ever heard of it and there was literally one half of a column in a medical journal  about it. We were told that there were less than 78 confirmed cases IN THE ENTIRE WORLD. We were told best case scenario: he would live to his early teens. We were told worse case scenario: he will pass before he turns 9. Either way it would likely be a respiratory issue that shortens his life.

One has proven every doctor wrong. Before we couldn’t find a support group or even families that are struggling with similar issues. We have found an amazing community through Facebook, which transcends distances and languages. Just knowing that there are adults with this syndrome like the incredibly talented, sweet and funny Emily (check out her instagram). There is also the heartbreak when a family losses a child.  However, knowing that there are other families out there that “get it” is more than any information a text book or a doctor could provide.

We are constantly dealing with doctors that say things like “Well, I have never heard of that.”. It is so incredibly rare. We know so much more now.  We know that even within Coffin-Siris Syndrome different genes are effected and how a doctor “labels” a syndrome is different. These are the multitude of gene variations that present clinically as CSS ARID1BSMARCA4SMARCB1ARID1APHF6SMARCE1SOX11SMARCA2. One has the ARID1B mutation.

One is a little different. But he is a whole lot of awesome. How our family is effect is an every day thing. He has apraxia, Cortical-Visual Impairment, Hypo-Thyroidism, Cognitive Delays, and he will always have difficulties. He is literally the most literal person I have ever known. He loves cars (and the owners manual to any car he can get his hands on). He loves his family. He loves to play tag. He is the hardest working person, even simple task that we take for granted are a struggle for him. He sees the world in a way that has helped me be a more positive person. He gave his father a reason to grow up.

I could not imagine a world without One in it, smiling brightly.

 

First comes love and then you choose to work at it…

Recently, a coworker just asked me a question about my marriage. “How do you make time for each other?” It is something I get asked a lot. It is pretty obvious we made some time for each other at one point or another in that we have evidence of making time.

The beginning it was easy. Everything was new and exciting. Talking to each other, sitting so close that in a dark corner we were one silhouette. The future, wants, dreams, fears. Memories. Opinions. Conversation and physical contact were one and separate. We were young and fell hard. We had both left relationships that had caused us deep emotional harm.

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The beginning, way back in 2006

But time moves forward. We have grown older and we have grown apart in some ways. In other ways we are closer. We work to make this work still. We take trips to be together. But we are two people that arrived in a place together.

We are still two people. We had very different upbringings, we have different interests and we have very different tastes in movies. But we have a lot in common and we enjoy each others company.

Relationships get pushed to the back burner as life gets hectic… especially when you have kids. Sometimes the partnership of keeping tiny drunken lunatics alive makes the relationship become harder. For a while my husband and I basically only discussed the kids. We went opposite directions and never came together for the mental intimacy that is necessary.

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This is our wedding photo in 2007

We grew differently. He left on a great adventure. His family that he loves so much was out of sight and out of mind. he made some choices that shattered a small part of me. choices still breath through the cracks left behind. Those choices profoundly changed the dynamic of our relationship.

The version of me my husband fell in love with is mostly gone now. The version of me he fell in love with was incredibly unwell. She haunts me still. Lingers in the background of me and keeps me awake at night. causes me to forget to make dinner, pay bills. Sometimes her anger and instability starts to leak through.

The man I fell in love with is mostly gone now. He is different now than he was at 21. More stable, less spontaneous. However, he is also more comfortable being himself all the time.

We have grown as individuals. Which means we work at knowing each other and the people we are becoming. I love him and the life we have but it is a quieter relationship then the tumultuous, intensity of our youth. We love the person each of us has grown into. It isn’t bad but it is different. Love is not static.

Love is a living breathing thing. It must be cared for and allowed to change. It has changed slowly in some ways and in other ways it has changed quickly.

I am not static. My husband is not static. We grow and change because we are alive.

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2014! 

People seem to look into the dressed window of our lives and see… something. It is carefully curated to look this way: easy. it isn’t any relationship is hard and adding in flaws and five small humans makes it even more challenging.

But that is what makes a relationship worthwhile. The downs are downs but they make the ups so much more delightful.

How to be intelligent but not smart…

So I have five kids. I have birthed three but I am partially responsible for the creation of five functional adults. Luckily the husband is around to balance out their upbringing but honestly its hard. We have therapy and cub scouts and girl scouts and gymnastics and dance and baseball and band and play dates and birthday parties.

THEN I thought, “Hey. You know what would be a really awesome idea right now? Finishing my BA in Mass Media and Communication.”

I am intelligent. But I am not smart.

So, it has been insane. Literally. Chaos. I am pretty sure I cannot remember the last time I dusted properly. Also, I have stopped sorting laundry. Or putting it away. It lives in its new home: the basket.

But the kids are fed, clothed, mostly clean.

Classes are being passed.

My marriage is surviving. Cuz you know the husband is also finishing his degree. at the same time.

Again. We are so dumb.

BUT I do want to say: English 352 Short Stories has been awesome. Some amazing stories. some great discussions. Now I am writing about Faulkner, Universal Verities and how those make impactful storytelling.

yeah. That is how I feel, too. And I wrote my own thesis.

 

 

Where the *&$^ does the time go?!?!

I had to take a “where the time goes” assessment for my orientation to the online program at Arizona State (Go Devils!). Every mother of five wants to intemperate and  have in black and white how little time they actually get to themselves.

“On average, how many hours a week do you spend with friends, going out, watching TV, going to parties, etc?” was where we had to put in family time. However, do I put homework help, bathing, laundry, walking to and picking up from school etc there or do I log that under “errands”.

The end result is that I get -18. Negative eighteen hours per week to myself to do homework, sit in lectures, read etc. And I rounded an average of six hours a night for sleep.   I laughed. Loudly. It woke up the baby. My god. I need an entire extra day in a week according to this generalized bs.

Sometimes there is no balance. Sometimes I listen to Three tell me about her project while I make dinner, sort laundry and helping the baby get his hand out of the shape sorter hole. (yes that was a real example). Sometimes my husband is home and I can tag him in on stuff… especially dinner making. The man can cook *swoon*. However, with his responsibilities outside of home I can’t be sure to have him here… I have been lucky for the past 6 years but we are 98% sure he will be going away for a bit coming up here soon. Being the sole day to day person is daunting but FaceTime is a really nice bandaid for extended Daddy absences. I will cling to that 2% uncertainty but I also know it is what is right, best and needed.

BUT ANYHOW…

There is never enough time in the day. You really cannot do it all without sacrificing something. Multitasking is all good but what task should get more attention that just can’t give it? Work? Family? Yourself? For a long time I “sacrificed” my younger dream and became a stay at home mom. It took some mental adjusting but looking back on the past 9 years: BEST DECISION I HAVE EVER MADE.

There is a lot that is sacrificed when becoming a parent. I really thought I could do it all as gracefully as a movie character. But there is no simple way. There is only personal grace. Accepting that maybe the kids won’t have perfectly braided hair. Or that dinner might be cheese, crackers and a fruit spread with a game of “what was the funniest thing you did today?” because honestly you forgot to think about it until 6 pm and the kids are “literally” wasting away from hunger.

Grace in forgiving yourself that it isn’t magazine quality clean. Grace in forgiving yourself that you napped on your lunch break. Grace in forgiving and embracing the limitations of being human.

And also late nights and too much caffeine.

We know I am all about that over caffeinated life.

 

Very Firsts… and Thirds, Fifth and Sixes.

The very first day of the new school year has been completed.

Mission control deems this was a successful day.

Everyone woke up on time, got to school on time, there were no tears or whining. We even manage to get a few half decent obligatory 1st day pictures! I managed to work, do my class, and enjoy time with Five all in the time before the big ones got home.

One got on the bus to his special program today. He has a rare genetic disorder called Coffin-Siris Syndrome (which I should write about one day) and has some mild cognitive and physical delays. He is also besties with the bus driver and was thrilled to see it was the same driver this year.

Two is starting fifth grade. Which is CRAZY because I remember fifth grade fondly. In fact I am friends with my former fifth grade teacher on FaceBook. I hope that this grade is good for him… last year was hard. He is going through “the changes of life” and I think it has thrown him off his groove. Kid is smart, funny and kind but towering over other 9 and 10 year olds can be hard, smelling like corndogs after PE when you forget deodorant (which he was still only 8 and 9 so completely understandable) and getting pimples over the summer can be hard on a guy.

Three is in her element. School is her jive. Desks, checklists, extra sharp pencils. She loves school, her teachers, her best friends, and all things that school has to offer. She cries when other kids misbehave and the class gets in trouble. Three is a rule follower and super diplomat. In kinder a boy was incredibly cruel to her and begged her for attention. When he would say or do mean things she would never retaliate. She demanded that he respect her space, reported him to her teacher and during the meeting that ensued said “He isn’t nice but I think he just doesn’t know how to be a good friend. I don’t want to be around him because he is mean to me but I will still be nice to him in class. Maybe he will see how to be kind and learn.” She was 6 years old. 6. Speaking with kindness and dignity. Girl is going to grow up and be a better human than I ever could be.

and Four.

Yesterday was Four’s very first day of Kinder. Which she has been chomping at the bit to attend since Three started Kinder. She hasn’t slept in 3 days. “I AM GOING TO KINDERGARTEN!!!!” And apparently yesterday was everything she could dream about. She told us all about how her teacher read the “The Kissing Hand”, how they learned how to ask to go to the restroom, that there are twins in her class and that they are so cute because they wear matching clothes, that she made friends.  She was disappointed that she hasn’t learned to read yet. Her father explained that reading takes time and practice and we can help her practice at home. He was told that he can’t teach her how to read because he isn’t a teacher like that. He can teach her how to ride a bike and do science but not read…. She has odd ideas but we will just groove with it.

We are so lucky that all of our kids are so excited to learn. That they view the classroom as an opportunity to have discussions, make friends, and explore the world. I hope that feeling never goes away and that they are always this excited about their first day of school.