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.

 

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.

 

The honor of Breastfeeding: the good, the hard and the ridiculous.

Last week was World Breastfeeding Week! (which you can learn more about HERE) I breastfed all 3 of my natural born children. I thought a lot about my journey. Each one was different.

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He couldn’t get comfortable, I wanted to wait until 6am when the alarm goes off…

Three was born  at the very tippy top start of the breastfeeding movement. I had little support from anyone but my mother and husband. I was told that she would starve, not grow, be spoiled, and never be as healthy as her formula fed counterparts. I fought back from doctor’s advice, family judgement and a nasty case of colic to be able to nurse her until she was 12 months. I regret stopping then. I don’t think she was ready and neither was I but I caved in the face of expectations.

Four nursed until she was 8 months. She switched to mostly formula and she liked it just fine. Things in our life were insane then and returning to a job at that point made nursing her hard. Besides once she could have her Daddy feed her she was less than interested in nursing. She is still a major Daddy’s girl and I think she honestly prefers him to me.

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Five is lip tied and is nursing on at 16 months. Nursing him has literally been excruciating at times. He also cluster-fed for 6 months straight because nursing was hard for him too. There were some major life events going on and I feel like nursing him was a comfort thing for both of us. Nursing a walking, talking, goofball toddler is… interesting… But extended breastfeeding is also ridiculous. Five likes to poke me, prod me, flip upside down, kick me in the face, roll his cars over my neck. It has moments were I literally do not want to. But the kid is persistent and will work HARD to get that boob out for a sip of milk. It doesn’t matter when or where. When Five is thirsty for some milk he will get some milk.

Breastfeeding overall is AMAZING. Nursing provides a connection to a child that is beyond words. Watching this human that you pushed out of your body by loin or surgery thrive on this stuff that comes out of the boobs you previously used to lure your mate is AH-MAZ-ING.

I honestly still lure my mate with these girls (even though they are a little flatter and lower … actually they are more like sad pancakes… far different than they were when I was 20). He is easily distracted, firstly… and boobs totally make him forget what he was doing. Plus, I am lucky that every change my body has gone through in bringing his daughters and youngest son into the world he cherishes.

I really started to look at my body differently. My body is badass. My body can run races, lift edges of sofas with one hand, function highly with extended periods of sleep deprivation and nourish infants.

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This is my life now…

That being said. Breastfeeding is hard AF. It can be lonely, painful, it is exhausting. It is not as rainbows and glitter party as it looks on the surface. Mothers looking up at their infants with love. That is there. But so are sore nipples, wonky milk supplies, dietary things (I had to stop consuming dairy… and Dairy is my drug). Breastfeeding is very literally done with: blood, sweat & tears.

Which makes it so beautiful. So empowering. When it is hard know that you can reach out to the mothers around you and they will (despite what the internet does) lift you up. They will love you on your journey. They will give you advise and cheer you on. They will tell you what has worked for them and they will tell you jokes. But most of all they will be your TRIBE. They will fight for you no matter what you decide to do.

So in honor of World Breastfeeding Week I lift up my medium cup of Dutch Brother’s Carmalizer in honor of all the momma’s out there that fight the fight for the future. That despite bleeding nipples and two hour sleep intervals still use their temple to let a new temple grow. Here is to you. Here is to me.

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Motherhood Rising

My heart didn’t know it could love this way until I was already up to my neck in motherhood. Love is exponential and never ending. Love, it grows and ebbs because it is alive, it needs to be nurtured and it needs to be recognized for it to thrive.  Mother’s day has many people thinking about their mother’s, about motherhood and how to be a better mother.

I didn’t want children. I wasn’t raised in a open and affectionate childhood. My mother loved us in an amazingly practical way. My mother is ever practical and also reserved in her affection. It wasn’t warm and it had some truly dark moments. My parents are human and have truly human flaws (you can read a bit about it here)

My mother loved us the best she could and at the time it was painful. Painful to see the love other mother’s poured into their children that was so tangible and physical. My mother loved us by working hard and in that had to be absent. She loved us by giving us what we needed and sometimes that pushed a hug or eating a meal together aside. My siblings and I have varied paths on how to deal with the emotions from a childhood where we clung together to emotionally survive.

But because of this jaded view on nurturing I didn’t want kids. I had no idea of what my spirit was capable.

Everyday my cup spills over.

I knew that being a mother and a partner in parenthood with my husband was a great gift.

Number One and Two are lights in the world. Opening my eyes to the love that can be given and received. I am so blessed to be a part of their growth. For all it is worth I give thanks every day that their biological mother brought these 2 amazing young men into the world.20151013_112617

My biological children… Three, Four and Five: my knowing each of them begins before they breathed this air or felt this sun on their faces. Each a private conversation for 40 weeks (41 for Five). When a woman is pregnant there are moments of turning inward, of a small psychic connection between her and her child.

Sometimes, Motherhood is exhausting. It is hard and painful and emotional. It is never perfect. But in it’s challenges and moments of frustration there is a lesson. There is an never ending reward of helping this amazing combination of you and your love become an adult. The reward is the journey. The reward is watching them grow into adulthood, seeing their successes and their failures. Not to solve every problem but to nurture them to be able to solve their own problems.

Motherhood is the gift that I never knew I needed. This mother’s day I thank the universe for giving me these humans to watch, teach and learn with.

 

 

Hard Work and Dolls

This weekend I fullfilled a long dream of Three. And I won’t lie. A life long longing of my own. We went to the American Girl Doll Boutique. It was delightful. A little overwhelming because ALL THE CHOICES but Three was absolutely in little 8 year old girl heaven. And I was over the moon, too.

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Samantha. My favorite.

I alway wanted an American Girl doll. I poured over the catalogs. I read the books that the dolls inspired… inspiring a life long love for historical fiction. Samantha, Kit Kittridge, Addy!

I really loved the costumes. However, my mom had a bunch of us to support on her own. There was no doll for me.
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These dolls are expensive. They cost a pretty penny. They are quality dolls. However, as a family of 7 with a scrambled together income while Dad is finishing his degree it isnt something we can just do.
So, we made a deal with Three. If she saved her allowance and could pay for 1/2 the doll her aunt and mom and dad would pay for the other half.
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Teaching these five humans about working hard and making good choices is really important to us. Starting in kindergarten they get one dollar per school day, payable at the end of the semester after graded come out.

These are the stipulations:
Must attend the entire day.
Must complete homework.
Must complete work day chores.
If they have below a B they owe us 10 dollars.
If they are caught: lying, stealing, cheating or other infractions they lose that weeks allowance.

They have to keep track of their cash flow. They each have a balance book. If they take out an advance for book fairs, special snacks and Christmas shopping that is up to them. (They always take out money to buy eachother gifts and it makes me smile)
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They must save up for a goal.

Three accomplished that. She set her goal and worked hard to achieve it. We are so proud of her.

The store was amazing. Every thing she dreamed of. She knew what she wanted before we walked into the door. But as soon as she walked in she was like a kid in… a toy store.

After an hour and a half she decided on Lea Clark. Lea is from Missouri. The state we lived in for nearly 4 years while Daddy served on active duty in the army. She travels. She loves animals. She is brave. She has the same hair color as Three.

Lea is just right for Three.

Three is still a sweet innocent child despite suddenly being picky about fashion. Despite what the world around us seems like.

And I am thrilled for her. I am thrilled to be able to have this moment with her because honestly despite the world around me. In my heart, I am still that eight year old wishing and dreaming over a catalog of dolls

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Lea and Bunny reading while their girl is at school.