Reasons to keep on nursing your toddler, even when they annoy the crap out of you.

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Reasons to nurse a toddler
1. Toddlers are notoriously fickle about what they will eat in a given day. Three grapes, a dust bunny and a half a crayon are less worrisome when you know they’ve nursed a couple of times (or more).
2. They roll on the ground in public places during flu season. (And transfer some of those germs to your breast, which tells your boobs to boost immune factors. Boobs are amazing. Toddler milk for a child not nursing often may be more immune-factor-dense than even newborn milk.)
3. The big bad world is a scary place. The boob is a great source of comfort and can help ease anxiety and smooth transitions.
4. Kids are hilarious when they talk about nursing. “I luf dat boop! I nursh please, thanks!”
5. Breastmilk absorbs quickly. So even if they’re puking and having diarrhea, breastmilk can help keep them hydrated and out of the hospital. (See #2, insert “norovirus” for flu)
6. More than just comfort, nursing releases endorphins for both mother and child. This is especially important when a child is injured. Boob helps ease the pain and calm the child (and the mom!)
7. Speaking of injuries, toddlers fall. Mouth injuries are not uncommon. Breastfeeding applies a perfect amount of direct pressure for lip and tongue injuries, stops bleeding, eases pain and may take “Oh my god we have to run to the ER” to “Oh, hey, I think he’s going to be all right” in a matter of minutes. It is in fact very difficult to apply direct pressure to a toddler’s lip in any other way.
8. Breastmilk is incredibly soothing for sore throats and can help a child who is refusing all food and drink get to the point of being able to take things by mouth. (I have pumped fresh milk for a friend’s sick, weaned child for this purpose. 3 ounces was enough to get him eating again.)

It is easier to go from some supply (even if small) to a lot of supply for a sick child than it is to go from no supply to any supply at all. It is NOT unusual to not enjoy toddler nursing. Sometimes it makes me want to jump out of my skin. But then something happens and I remember why I keep on keeping on. Because the benefits are worth it, and when we need it, we really, really need it. So I set limits wherever I need to, but I don’t cut him off entirely.

How not to lose food in a power outage

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The power goes out! What do you do?

1: DO NOT OPEN THE REFRIGERATOR OR FREEZER. Not for anything until you have some ice.

2. Why did the power go out? If it’s due to cold temps outside… not to worry! Take all your freezer food and put it outside. Get organized, put it in a cooler or tote inside, and then put it outside all at once so you are not leaving your door open and letting your precious heat out any more than necessary. It will be fine out there until the temps hit 33 degrees, at which point you will either have power or you will find another solution.  While you’re putting your food outside, get some snow, pack it tight in plastic containers, baggies, anything watertight. Put the snow in the fridge. You can now get food out of the fridge until the snow melts…at which point you need to put more snow in.

3. If the power outage is NOT due to cold weather, you have a couple hours before things become urgent. Talk to the power company. The freezer and fridge should be fine for a few hours as long as it is not super duper hot–they are well insulated, just LEAVE THEM CLOSED. If the estimate is “you’ll be repaired in an hour”, just wait it out. If the estimate is, “We don’t know, it could be days”… you need to take prompt action. If you have substantial freezer stores, buy or rent a generator if you can in the long run, but in the short run, you need ICE. Buy ice or even dry ice as soon as you possibly can. A chest freezer well packed can stay safe for up to two days without added cold stores, but can stay cold indefinitely if you keep tossing dry ice into it every day or so. A fridge is good for about 4 hours with no power and no ice if you do not open it.

It is almost always going to be cheaper to keep the food cold than to buy all new food. Even if you end up spending $100-150 on a “multi day cooler” and packing that full of your fridge goods and some ice, it will still be cheaper than replacing every single thing in there. If you have the storage space and are prone to power outages, consider getting a large “igloo” cooler.

Frozen foods can be refrozen as long as they still have some ice crystals and are below 40 degrees.

So what if your freezer does defrost and the food is “safe” but not icy?

Keep it cold, cook it as quickly as you can, and freeze the cooked food.

Also, ASK FOR HELP. If you are having issues keeping your food cold and can’t drive to get supplies, if the roads are passable for a skilled driver, ask your friends if there is someone who can help you save your food.

Here’s what the g’ummint says about it:

http://www.foodsafety.gov/blog/poweroutage.html

 

 

Please don’t be sad that your children are growing up

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I see this all the time, parents expressing sorrow that their children have hit another milestone, have left another stage behind.

I understand being wistful, I still don’t grasp how that newborn I held is suddenly this active little boy. But regret?

No. Not even for the last baby.

I also see parents so eager for the next stage that they push the envelope… rushing ahead. Not even for the first baby.

I’ve not been wildly successful at a lot of things in my life, but one that I’m doing quite well is enjoying Miles’ stages while he is in them. He leaps forward in bounds, now crawling, now talking, now conversing, now jumping and spinning and throwing tantrums and I know that Why is just around the corner…. And as he leaves each stage behind, I do not mourn.

I had a baby who stayed a baby. Shiny was a newborn for months. She was an infant in arms for over a year. A scootching and then crawling baby for many years.

And I will never tell a child, “Don’t grow up”. I will never tell a child, “Stay the way you are”. I’ve seen that. It’s not what you think.

I don’t push Miles forward, but I don’t hold him back. I love the stage he’s at now… and will be grateful when he leaves it behind, as he’s left every other stage behind. Because that’s what children do. What they are supposed to do.

And when they don’t, if you get that wish that they’d just stay this way…. something has gone terribly wrong. Please don’t wish for that.

Duct Tape Baby Carrier

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So, back in 2006, in preparation for the first International Babywearing Conference, I made this:

Jenfront2006

Yes, this is a duct tape mei tai. And that’s wee Shiny at 16 months old.

Kristi

I designed it to be reversible. Kristi Hayes-Devlin of Wrapsody demonstrated it as a back carrier, with the reverse side showing.

 

sleepyshinyduct

Once I buffered Shiny’s skin with a scarf, she fell asleep. It was pretty comfy, all things considered.

 

gabiback

 

Gabi, who founded Beco, was inspired. With a pillowcase and a couple long strips of duct tape, she made a podaegi. Someone added a pair of sling rings to turn it into an onbuhimo at some point.

 

gabiside

 

It was epic. And pretty legendary. I always thought about making another duct tape carrier but never quite had sufficient motivation. A full duct tape mei tai takes about $20 of tape and 2 1/2 to 3 hours worth of work. It’s actually easier to make a carrier out of fabric. With a duct tape carrier you’re basically making the fabric, as well as the carrier.

Fast forward from August of 2006 to January of 2014. How is it possible that over 7 years have passed? And pray tell, how could *I* possibly forget ALL my baby carriers at home? Every one. My car had been cleaned out thoroughly, so no stragglers. And we were in Seattle, at a filk convention, with a rambunctious two year old who decided that running away was the new game of the moment.

I considered, briefly, hijacking a bedsheet. But I had to go to the store anyway, and thought, “You know, if after 20 years of babywearing I can’t come up with something more fun than a plain white hotel bedsheet, I’m clearly doing it wrong.”

Four rolls of duct tape and two and a half hours later, I had this:

2014ductback

flatfront

That, my dears, is a fixed-strap half mei tai, custom sized for Miles and for me. I knew I wouldn’t use it on the front, so no need to waste tape and time and effort making the top straps adjustable. I didn’t want a whole lot of bulk around his middle, and knew where the stresses and supports needed to be, so I shaped it. Made the waist band long enough to do tibetan style, knowing that every step I could take to pull the tape straps out of my armpits would add half an hour to the time I could wear this. Plus, tibetan style, I would not have to knot the duct tape straps–I just went back and forth a couple times between the two straps and the friction held everything VERY securely in place.

2014milesonback

2014ductfront

He looks a lot like his sister.

I used it all weekend, for up to a half hour or so at a time. It worked best when I wrapped a scarf (bought one with the duct tape, just in case) around his bum and my waist, drawing his weight in lower down. But even without, was quite serviceable. Not as good as a padded toddler carrier, but certainly as comfy or more comfy than the vast majority of other carriers.

20 1/2 years of babywearing.

Yep, I still got it.

 

Now, for some technical details, rules I follow, because while I am not RECOMMENDING that others try this, I know some people probably will and it would be wise for people to observe some safety guidelines.

1. No adhesive is to come in contact with baby, and should not come in contact with the wearer once the carrier is finished.

2. ALL places on the carrier must have at least 4 layers of tape, and any non-strap area must have tape running in multiple directions. I make a “sheet” of duct tape fabric by lining the tape up in one direction, then applying tape to the glue side at a different angle. I used no scissors in the making of the most recent one, but the tidiest result will happen if you make a big sheet of rough-edged double-layer “fabric” out of duct tape and then trim the edges.

3. Attention to strap safety is a must. The straps on this are four layers thick… and they are reinforced where they join the body. In fact, I applied the straps when there were two layers of duct tape to the body, and then went over the top with more layers of tape, creating one large “piece” shaped and strapped.

4. Finish edges with half-strips of tape. This will prevent tearing and keep the glue off everyone’s skin.

5. If you are planning on wearing baby on the front, DO make longer top straps and go the mei-tai route. If you are not going to use it as a front carrier, you can do fixed straps. I did this with help from my husband, tying the carrier around my waist while he held our son in place, then measuring the length of the top straps on our bodies. If you want a more SSC style carrier you’re going to need to get some side release buckles, and at that point you might as well sew the darned thing out of fabric, it will be more comfy.

6. Rulers are not needed. I used a piece of folded-over tape to measure from the front of one of his armpits, around his back, to the front of his other armpit, and then added some width for tape. I measured from the back of his neck to the front of his crotch, and from knee to knee across his bum. That set the width of top and bottom and the length of the carrier (essentially tied apron style, though that’s not how I put it on.) The bottom straps I just made “plenty long”.  The hourglass middle is a little wider than the width of his back and positioned near his hips. His legs are well enough supported. If I”d been less tired I might have shaped the body and made it a little wider in the middle.

7. The core of this is relatively inexpensive silver standard duct tape. Decorative print duct tape is much spendier, so save it for the outer later. All layers are structural, but having a core of 2 layers of silver and then making it completely covered with decorative tape to the point where no silver shows guarantees sufficient tape throughout.

Duct tape is very strong lengthwise, but is designed to tear. This is why multidirectional tape is a must in all places and finished edges are a must. Most fabrics are designed this way!

This required no sewing, no hardware, no scissors, no rulers. It is custom and fitted to us, but not “share-able” the way a full four-strap mei tai would be.

Combining duct tape and fabric is possible, but you need to pay attention to stresses and reinforcement.

Every time you wear a carrier, no matter what it is made from, you MUST check it for wear. A $20 duct tape carrier WILL wear out with use, duct tape is not designed to withstand constant flexing and friction, so you do need to check it every single time, especially at stress points.

I am more comfortable using a duct tape carrier on an older baby or toddler. For an infant I’d rather use a bedsheet. This is a good “In a pinch” carrier, but duct tape is not designed for babies to mouth. On a mei tai, you can “dress” the mei tai with a long sleeved shirt to protect baby from the tape, if you must.

These are really best for short term use, and in situations where you want to get people talking about babywearing. I took my first duct tape carrier to the SCA…

Feel-better Chai Pudding

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An experiment worth repeating….

In a jar:
1/4 cup chia seed
1/8 cup coconut sugar
1/8 cup cocoa powder
1/8 cup maple syrup
1 teaspoon “power tea” (Power Tea is a mixture of organic spices including: Ceylon Cinnamon, Cloves, Ginger, Turmeric, Black Pepper and Cayenne Pepper., very chai-ish, LOTS of anti-inflammatory action.)
1 tablespoon elderberry syrup
1 cup almond milk or coconut water or raw milk or coconut milk or whatever.  I used a blend of almond milk and coconut water.

I actually tripled this recipe though had to short the milk a tiny bit to fit in a quart jar.
Stir well and let sit in the fridge for a couple hours.

It makes a spicy chocolate pudding that unlike refined-sugar-based desserts, actually leaves one feeling better. I’ve been fighting off the flu for a couple days, and I feel almost 100% after a bowl of this.

The cocoa, spices and elderberry all have good evidence for being medicinal. Also very tasty.

Ridesource

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So we’ve been using Ridesource (special needs public transport) since December. While it does save me driving, it has been a MASSIVE hassle. Top on the list is child safety seats. Technically Shiny is allowed to ride with just a belt. In practice, the belts are too big. A low back booster makes it fit, but is not ideal because you’re not supposed to use a low-back booster with a lap belt. Her carseat weighs 20 pounds and is not a great fit on the bus because the seats are too small and it has too much movement with a lap-only belt and there’s no actual tether point for the top tether.

So today Shiny gets off the bus and the driver says, “By the way, the lap only belts don’t fit her well enough to keep her from moving around” (she’s made 3 trips this way and they’re only just now telling me this?) but I just put her in the kid seat in the back, and it fit perfectly and she stayed put.

WHAT KID SEAT IN THE BACK?

The one that one of the back seats breaks down into, that’s what. Which apparently NO ONE but THIS driver knew. 

So YAY, they have a built-in kid seat on the bus that works perfectly for her!

And GOOD LORD WHY DID THEY NOT USE THIS A MONTH AGO?

And I quote, “Every one of the buses has one.”

No, really, do NOT fucking touch my children without permission

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Several people have said, “Oh, but touching his clothed foot wouldn’t likely spread flu”. Or “You shouldn’t have swatted that man’s hand away.” Or “You could have been more polite about it.”

One person even suggested that not letting people touch my children in public might create problems for my children in being touched as adults.

You know what? I was raised to know that my body was my own, and that if someone I didn’t know tried to touch me without permission, I was absolutely within my rights to yell, “No!” and leave.

That I didn’t have to be polite about it.

It was a good lesson to learn. Would have been even better if it had included that if people I did know tried to touch me without permission, I was STILL within my rights to yell, “No” and leave, but regardless, it served me very well with strangers.

I can name at least three times in my life where that lesson got me out of a situation that could easily have turned into severe molestation or rape, ONLY having been touched once in a way I didn’t like.

On one occasion, a man reached out and grabbed me–my crotch–when I was nine, and I pulled away and yelled no and then ran. He sounded so surprised I wouldn’t just let him. Makes me wonder how many girls did.

Another occasion, a friend’s makeout buddy reached out WHILE MAKING OUT WITH HER and grabbed my breast while I was trying to sleep. I yelled, “No!” and threw my clothes on and left.

On a third occasion a boy ran his hand up my leg because I had the audacity to wear nylons, and I told him to stop and when he got snippy I got the teacher. Who was an ass but that’s another story. I made it stop.

My child learns about loving, healthy touch and boundaries by being touched in appropriate ways by people who love him and by having his boundaries respected.

So yes, when people violate my son’s personal space and mine (the guy’s hands were inches from my chest, he had to put his hand between me and the cart to grab Miles’ foot, and he was not holding it gently, I had to use some pressure to push his hand away) I will respond reflexively by telling them “No” and pushing them away, and then leaving.

I will NEVER apologize for that reflex.

And that, my friends, is why you should not touch strangers’ children without permission.

Because doing so, you’re violating boundaries.

That, and because you really do not want to trigger a defensive reaction in someone who may be a survivor.

It doesn’t even have to be about the germs. Bodily autonomy is plenty reason enough.

He’s lucky I didn’t slug him.

Don’t touch my children in the grocery store

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It’s happened several times now, the latest was this afternoon. I was in Trader Joe’s, and a man came up and started commenting about the fact that Miles was in his jammies. I said, as I often do, “Wouldn’t it be great to be two and be able to get away with wearing footie jammies everywhere?”

He laughed, and then reached out and grabbed one of Miles’ feet. My hand came down and batted his hand away, and I snapped, “Do not touch my child.”

He looked shocked, and said, huffily, “Lots of people like me being around their children.”

“I don’t mind people talking to my children,” I said. “I don’t allow strangers to touch them in the grocery store.”

He then said to Miles, “When you’re 18 you’ll be on your own.”

It was only after I walked away from him that I realized that this exact same man has approached us before and tried to put his hands on Miles and I blocked him then, too. It’s the fourth or fifth time something like that has happened in Trader Joe’s. Close spaces? Friendly atmosphere? Beats me. The others have been middle aged women.

Now, this guy was scruffy. Looked kind of like a bum. But I had ZERO problem with him talking to us… it was when he reached out to grab my kid’s foot that I went from friendly and chatty to snarling mama bear. I’ve snapped the same way at well dressed middle aged women.

Here’s the deal…

People may just be social. However, recent research shows that our behavior can, in some ways be governed by the pathogens we carry. People may be more likely to be spontaneously social when they are contagious but not yet symptomatic with influenza.

http://www.academia.edu/533848/Change_in_Human_Social_Behavior_in_Response_to_a_Common_Vaccine

There are a number of pathogens that can profoundly change the behavior of the host organism. Toxoplasmosis may have few obvious symptoms in adults…but can actually change behavior and personality in subtle and dangerous ways.

And of course there are those zombie ants, who get infected with a fungus that induces them to climb to exactly the right microclimate, latch on, and die, thus allowing the fungus to propagate.

http://www.telegraph.co.uk/science/9953571/There-are-zombies-among-us.html

So when a nice older man or woman approaches my child and reaches out to touch them (why is it always the feet?) they may be a perfectly nice “auntie” being friendly and sociable…

Or they may be a zombie aunt.

(postscript: I did in fact get sick once, possibly this encounter, I don’t remember, but from one very like it. Fun times.)

Obligatory End of Year Post

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I’m finishing the year must as I started it at the moment—nursing Miles and spending time with family.

2013 was a huge, huge year. It started with surgical recovery and the addition of a family member, in the middle it was hard and everything was in transition constantly, and in the end, we had to fix our house a lot and struggled to get to a new normal which is not yet settled.

Forevermore, I will associate the new year with my son. He turns two on Thursday, which is crazytalk, but tomorrow we will fill our living room with two year olds (four of them should do the trick) and they will eat cupcakes and it will be low key and fine.

 

I’ve been struggling with depression. The battle to get respite and to get health care coverage has been demoralizing at best. One of my coping mechanisms, which only parents of violent children will understand, is to know that I have a choice, that if it gets too bad she can live somewhere else. I could think about that choice because foster care through DDS is a very different creature from foster care through CPS, the training is different, it is voluntary, etc. etc. But the same issue that prevents us from getting respite paid for also prevents her from entering that system, so really the ONLY option that would get her out of the house if she really injures someone is basically calling CPS, and that’s not an option for a kid like Shiny. Putting her in therapeutic foster care is one thing, but tossing a medically complex kiddo into “the system” is not happening on my watch.

Feeling trapped is one of my worst, worst triggers for depression. “Acute situational depression” is still situational and acute even when the situation is chronic. The cure is to fix the situation, I just feel like we’ve been slogging against it for so long.

My parents are paying for a couple days of respite this week, one day next week. We’ll get through it. When I can’t use my usual coping methods, we default to “things change, it will be different later.”

That and video games. I treated myself to the second chapter of Starcraft, which actually passes the bechdel test, but has kind of an annoying “heroine”. The game play is fun though, even if the story is (by necessity of the game design) aggravating. When you design a game where you have three factions and you play all three factions, kind of everyone has to suck at some level, and you have to sort of hate everyone. So I am playing the zerg mother and bash smash swarm it’s a decent outlet.

I don’t do new years resolutions. Coincidentally I will be starting my elimination process next week whereby I figure out which foods I tolerate and which I don’t. It is not a “diet” per se for weight loss, but an attempt to figure out if I can feel better by changing my diet. We shall see.

Miles

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Miles is 20 1/2 months old. He is about 28 pounds, maybe a little more. He is talking in sentences, but sometimes his sentences are kind of wacky. He can imitate almost anything he hears… unless he already decided he knew how to say it before he really figured out how to say it properly, in which case we get things like “Gapes!”  and “Boop!”

The other day a friend came over with her son, who we’ll call Joseph, as she doesn’t generally identify him online by his real name. Joseph is about 5 months older than Miles. That makes him 2 years and a couple months. Joseph is not quite as verbose as Miles is around strangers, but has the word “Mine!” down pat.

Miles was fascinated. He said, “Joseph!” clear as  a bell a moment after the boy came into the room. They played, fought over a toy, shrieked at each other briefly and then settled down to play. His mother said, “Joe…” and Miles picked up on this. They were here for five minutes. Ever since it is “Joseph. Joe. Joseph. MY Joseph. Mine.” Those who know the child in question will be able to substitute his real name into this dialogue, and his nickname….

He’s also wild about his cousin, “Lala!” He sometimes says Laura, but usually it’s “Lala!” and his pitch and decibel level rise in excitement when she’s around, usually to the level of sonic torture within moments. Lala is the one who teaches him things like “Flying with Cars” (stand on table, take flying leap onto Cozy Coupe toy car’s roof, go skidding across the living room), “Perching on cars” (climb onto roof of car, be lord of all you survey) and “Gate scaling 101.”

Laura commented today that when he is four he will be bigger than she is. What she doesn’t realize is that when he’s four, he’s going to be bigger than she is when she’s six. She’s about 30 pounds. He’s 28. He’s been catching up steadily since birth. I’m guessing age 5 or 6 is when he’ll catch up to Shiny. For all that, he remains RIDICULOUSLY average. I think his weight is like 65th percentile, but we won’t know for sure until the next time he gets sick, because I put my mama foot down and will not set foot in the doctor’s office with them unless there’s a damn good reason, and having the doctor weigh and measure an obviously thriving child is not sufficient to risk setting foot in the office. We haven’t been in months… he hasn’t been sick in months. Coincidence? I think not. Screw you, well baby checks. We’re not vaccinating until he’s at least two, so there’s no point.

He’s my first kid to NOT fall percentiles in the second year of life. Kailea went from Sumo Baby to average during that time, Shiny went ages not gaining and then we went on a cruise and started her on CoQ10 and she put on 5 pounds in about 2 months. Kailea spent a year putting on a pound and then put on 3 pounds in 3 weeks right before her 2 year growth spurt. Miles just keeps ticking merrily upwards, his proportions changing very little, he just keeps getting closer, you know?

The baby isn’t all gone from him yet… what remains is the child who roots desperately in his sleep when the nipple falls away, and then who turns his head away and purses his lip when he’s sated. When he’s awake he’s all kid, but he clings to that last bit of baby in his sleep.

I find myself cherishing where he’s at, and cherishing the progress he makes, and regretting his passing through stages not in the slightest. When people say, “Stop growing, baby!” I shudder. I’ve been there, done that, and it’s not all that. Grow baby. Grow at your own pace, do your thing, you’re doing just fine.

A snapshot or two, verbally

“Go ahside? My Ah-side? Go car? Go car Shiny?” (Commenting on the process of picking up his sister from the bus.)

He no longer runs for the street when the front door is open. Until hubby turned it over, he ran for the kiddy pool instead, to splash in the 2 inches of water and muddy leaves and sticks he’s put in there like its his job. And for a few precious weeks, for the cluster of blackberry bushes, where he separated the berries into “Yayboowies” and “Yumboories” and “Yucky boories”. He chases our tenants’ cat and runs from their (giant) dog… (Atari the dog is a big black goofball. He’s half black lab and half newfoundland. He is a seriously HUGE black goofball. He can knock Miles over with his tongue, and often does.)

“Gimme dat” and “Leh GO!” and since our young friend’s visit, “Mine!” are becoming frequent refrains. He tried pulling that crap with Laura, who was all, “Dude, I’m an expert” and promptly stopped when she shriek retaliated and sat on him briefly. That said, he’s rapidly breaking her of the idea that she gets to set up elaborate play structures in this playroom and expect them to remain…. get this…. *rofl* untouched. She has her house, and her only child queen bee status, and she can do that THERE. Here, if you walk away from your six small creatures each in separate cups, you’ve got to expect that Miles is going to haul off two of the cups with creatures in, and that Shiny will pull the creatures out of the rest and then stack the cups, and then mug Miles for the cups he’s got and stack those cups too.

It is noisier but easier, marginally, with her here, though I find her talking to be endless. It’s been a long time since I had someone asking me that many questions.

Miles does ask questions but he’s not sure why yet. He loves saying and signing “What?” but doesn’t get that when I say “What?” to him that it’s a request to repeat what he previously said. If he’s getting in trouble and I start to catch him he’ll preempt me by saying, “Wha arn you dooning?” or the variant, “Where arn you go-ning?”

The inflection is priceless, as he apes me quite well. Including things he shouldn’t, like, “Dammee!” which is always said in as appropriate a situation as you can get for a 20 month old… such as, I drop my mouse, and he says, “Dammee! Dopped eet. I get it.” Since he then hops off my lap and hands me the mouse, I can’t complain.

He’s exploring cause and effect, and consequences. I handed him a bunch of grapes on Tuesday as we drove home from the produce co-op… and he ate many, but then started hollering, “Oh no, Gapes!” as we drove to Kailea’s house. A mile away from our destination, he started crying.

When I opened the door, I discovered many, many grapes lying on the floor of the car. I picked them up, handed them to him, and we were off with Kailea to go home…. as I drove we heard a small. thud…thud thud… and then, “Oh no, Gapes!” We glanced at each other, and tried to keep a straight face as we heard again…thud..thud thud…. “Oh no, Gapes!” And again with the crying…. by that point we were laughing out loud. 13 grapes he threw overboard, every time yelling, “Oh no, Gapes!”

He is SUCH an easy going kid. I mean, he has opinions and will get mad, but he genuinely enjoys having other kids around and seems to instinctively know how to insert himself into their play in a way I certainly never figured out. It’s like he’s surfing the top of the bell curve.

Oh dear god, I think I’m raising an extrovert.

Objectively hard

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My sister used those words to describe Shiny the other day. “She is objectively, genuinely hard, for anyone.”

Today the kids had respite together at The Arc. I was told years ago that “ARC” stands for Association of Retarded Citizens. Now they’re just The Arc. First Saturday of the month, they offer respite. 6 hours for $10 for the first child, $5 for siblings. We just learned about this a few weeks ago.

We showed up, spent half an hour filling out forms (which the caregivers did not read) and the kids ran gleefully into the play room. Well, first Shiny disappeared completely off both our radars (I thought he had her, he assumed that since I had my head down filling out forms and sent Miles his way that I had her.)  So there was that panic, she turned out to be in a side room, and all was well. The kids were delighted to be there and to have the run of a huge space.

We left them there and came home and I did some dishes without anyone shitting on the floor and ate some food without sharing it with anyone and I took a nap.

Went school shopping (which makes me furious… free and appropriate public education means a list of $40-50 worth of stuff PLUS a request for $25 cash for supplies. I’m going to gently suggest to her teacher that next summer she should give me a list for the whole classroom, I will find the best possible price on the stuff and we’ll get it wholesale and divide the cost among parents. Because buying two reams of copy paper is just stupid.

Got back to pick up the kids… Miles came wandering up, checked me out and then wandered right back off again. The first words out of the caregiver’s mouth were “Does she have Pica? She ate crayons.”

“I put it on the paperwork,” I said.

“I didn’t look at that,” she admitted.

Sigh.

I find Shiny. She has a scrape on her face. “She threw herself on the ground,” the person watching her said. “Does she have pica? She ate crayons. We’re going to need to have 1:1 staffing with her next time.”

I have no doubt Shiny threw herself on the ground. And at this point, I don’t let her have more than one crayon at a time and we stop if she starts to break or eat them. As far as paper goes, I don’t really care if she eats it–as long as she’s not eating lightbulbs and pottery fragments we’re okay. (She’s done both.)

She is genuinely hard. I just hope this doesn’t mean they have to bill us at the higher rate for after school care, because while we can do the whole month at $9 per hour every day after school… not so much at $18 per hour.

But I don’t feel like quite such a jerk for having such a hard time this summer.

One. More. Day. Monday is no school, Tuesday they start.

 

Trudge trudge trudge

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In the morning I go to drop both kids off with a woman far more competent than I at this whole parenting nonsense–she handles Miles and Shiny and her four and five year old and sometimes a couple neighbor kids and she’s SIX MONTHS PREGNANT. At six months pregnant I was lucky if I could get up and down the stairs.

Then physical therapy. Then back to get the kids and back home to talk to the DDS worker. I vacillate between wanting the house to be cleaner and wondering if I shouldn’t have had the person who cleans for me in on Monday, so he could see the full force of what it gets like.

I inhaled a tiny bit of sausage tonight. It is irritating and annoying but not blocking my oxygen, so hopefully it will not kill me before tomorrow afternoon. I have too much shit to do.

The two most likely suspects for taking Shiny after school are full… and her school program goes from 7:30 am to 2:20 in the afternoon. That’s door to door. It is the shortest school day she has had during the regular year since kindergarten, and I’m going to have to fight them to get her a little earlier so she can have breakfast at school. So after school care is important. The city is the cheap option. Then there’s the daycare down the street, run by one of our co-op members, not terribly more expensive per month, but the co-op mama is gluten free and aware and holds babies and doesn’t hold slavishly to schedules for their own sake and would probably be a better fit, not that it matters, she’s full. Shiny is first on her wait list and 7th on the wait list for the city.

If respite comes through, there’s other options, but I am not holding my breath. I feel like a schmuck for wanting her out of the house from 7:30 am to 5:30 pm, but that extra 3 hours in the afternoon (4 on Wednesdays) feels like the difference between surviving and maybe, possibly starting to get my health back. When it’s just me and Miles, we range through the house, go places in the car, do things, take naps, get shit done. When it’s me and Shiny and Miles it is hard to get out of my chair, I can’t leave them alone together for long and I *certainly* can’t take them with me. I can’ t just be upstairs napping with Miles while Shiny is downstairs, she’ll push a table over to the entertainment center, climb up and dismantle my network (which is currently located about 7 feet off the ground). I can’t tell you how many routers I’ve already gone through. It is crazy. If she were a typical 8 year old, she would actually be a force for order rather than chaos, she’d be able to make her own lunch, she wouldn’t be smearing shit on the walls, she’d be helping with her baby brother rather than clobbering him. I don’t often think about that, but today I must because today I need to make the case for services based on her disability, and that means pointing out EVERYTHING that is different because of her disability.

Horrible head space, but it’s for a good cause.

This sausage is annoying the crap out of me–I’m not thrilled that my next step is to go upstairs and lie down and put a c-pap on, I think it will just drive it farther down.

Another for the “I don’t know what to think” files…

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I was sitting here, Miles was playing next to me.  All of a sudden I heard a thump, and a rustle and a cry.

“Oh my god, Miles just fell out the window,” I said to my husband.  He ran outside.

I looked out the window to find my son standing in the ivy about 5 feet below my window, hollering. I could see a spot of blood in his mouth, and put my hands down to him. He reached up, took my hands, and walked up the side of the house until I could bring him inside. There was a red mark on his side. Another on his elbow. He wouldn’t let me look in his mouth.

I latched him on. And gasped. Because the niggling little discomfort I’ve always had when he nursed was gone.

He apparently popped the last of his tongue tie.

He’s acting 100% fine now.

I’m sitting here with the crazy eyes and the nervous laughter.  I just don’t even.

In the desert

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So when Shiny was born, we did not go to Holland, but instead were dropped in the desert.  We eventually found a well, and managed to put together a dusty little life with just enough water to get by most of the time. There were drier times, and the occasional deluge, and for a little while, we had steady, frequent rain and things started to bloom.

Then, abruptly, there was a sandstorm. I woke up one morning to find that my well was gone, the garden covered with sand, my shelter blown away and the sun beating down. There were some jars of stored water, but not enough. And some of the jars I thought I’d set aside had cracks in the bottom, when I moved a jar i found the one behind it dry as a bone. I’d known there would be dry times, but I wasn’t prepared for how thoroughly the water had disappeared, how quickly.

I knew there was water across the valley, if I could just get there I’d be allowed to stay for a while, and we would be okay. But I had to get there.  Across parched earth, with a few jars to sustain me. And so I set out. “One foot in front of the other,” I thought. “I just have to keep moving, eventually I’ll get to the other side. Then I looked at a map, and realized it was farther than I thought to the other side of the valley. There was supposed to be an oasis on the way, but when I got there, most of the water was gone, I ended up thirstier digging for the water than I’d been just walking across the desert.

Weeks passed. Occasionally I came across a water seller, and paid for a cup here, a sip there. Just enough to not die. I asked someone for help, and she said, “Oh, hey, just over that little dune there, there’s this oasis! You can stay there for a couple of weeks, it’s wonderful, they have a pond and a cabana boy. You’ll have to go a little bit out of your way, but it will be fine. I took the map she offered me and was about to step that way when someone else said, “No, there’s another oasis even closer, and you won’t have to go so far out of your way!”

Grateful, delighted, and looking forward to a good long drink and a nap in the shade of a palm tree, I stepped over the hill, and saw a palm tree and what looked like a deep well…. I pulled up a bucket and began to drink. At first the water was clear and cold and refreshing. Then without warning my mouth was full of sand, and I looked up and saw the palm tree was made of plastic and the green oasis I was promised was just more sand. Someone leaning against the palm tree said, “Oh, just scoop some of the sand out, there will be more water… I did, there was enough for a few more swallows, even enough to put a little bit of water in a jar, but those swallows were bitter and sandy and I cried… no two week oasis, just another water stop, and the edge of the valley looked farther than ever.

I called out for help, and a woman came rushing forward, put her arm around me and said, “Over that hill, we have more water. And you can stay, and we will make sure you have water for as long as you need it.”

“I can’t walk much father,” I said. “I need water now if I’m going to stay in this desert. I’ve been thinking about leaving. I don’t want to, but I might have to.”

“Just over the hill,” she said. “Right there.” She pointed, and I could see the shimmer of water and tall trees.

“Okay,” I said, and kept walking. I could still see the water, the trees, but they didn’t seem to get closer. My arms felt like lead, my throat parched. I called out to find out if the water was there, and a man answered, “Oh, it’s two hills over, but they may not have enough for you. We might have to send you to another hill, and then it’s only if the people there say you can go.”

At this point I was almost to the edge of the valley… but the community which had been if not green, at least capable of sustaining us through the winter, had a sign up, saying, “Water shortage.” I asked the man, “But isn’t there something you can do?”

“There’s a guy over the next hill,” he said. “He might be able to help you.”

I trudge onward. Friends stop by and offer me a drink, just enough to keep me alive. The guy over the next hill is almost to the hill after that. There was a sign stuck to a cactus about how over the mountains there is a rainforest, how if you say the right words and talk to the right people and then wait for a while, they might build a pipeline and irrigate my home for good.

And if I’d known about those things before the drought, I’d never have had to march across the desert.

I will believe in the water when I see it, not before.

If one more person offers me a “water” bucket full of sand, I’m moving to a rainforest. Someone else can tend my cactus.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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This was sent to me by the people who sent Shiny home from camp last week.

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This is the inside.

Remember these are the people not trained to wipe butts. Nor, apparently, to have any tact whatsoever.

I’m feeling very worn right now. This is not the kindly note they think they intended. It is salt in the wound.

DDS approved us this week…but can’t get a worker out here until 4 days before school starts, and he thinks I won’t get assistance very promptly. “We may not have any unallocated funds,” he said. “It has to go to the committee. You need a service plan. We might have to take from short term funding, we only got half the money we normally get. You might go on a waiting list.”

I feel like I’m watching Lucy hold a football. That help would be about 50-70 hours of respite per month (not $1000 worth that they told me earlier.)

My advocacy worker says there’s another program. It has a waiting list of up to two years to even get an interview. Only 3% of disabled kids get on it.  That one can provide up to $34,000 per year of respite and home adaptive improvements.

A parent who has been through the process asks who my worker is. I tell her the two names I’ve been given. “They both suck,” she says. I tell her the one I’m most likely to see first. “He’ll try to make it sound like you’re doing okay,” she said. “Just watch.”

I told her what was happening with us right now. She said, “Tell him. Most people try to make it out that it is not so bad.”

I tell her about the way I keep Shiny in her room. “DDS will tell you it’s illegal,” she said.

Honestly, if it’s illegal, fine. If I don’t lock her in her bedroom at night, she will create a danger to herself and others, and I will wreck my car with exhaustion. Parenting a child like Shiny you don’t get to take the high road, you just get to try to find the repellent parenting methods that cause the least harm for the most people in the long run. Someone else thinks it’s not good enough for Shiny, they can take her and try to do better. Because this is what I have and this is what I can do and that means she spends 90% of each day locked in one room or another. One of the rooms is her bedroom, which she loves. The other is my living room, which is huge and open and gorgeous and this is what I can give her, these two rooms. If I give her the run of the house, she climbs on me and then throws her head back into my face. Or slaps me. Or throws everything from the counter onto the floor into her brother’s reach.

I ask her if I should try to make Shiny wear clothes when he comes. “Let her do her thing,” she advises. “Don’t try to clean your house up too much either.”

As if.

So, maybe someday we will get resources, if state funding doesn’t dry up. If someone believes we’re that bad off. In the meantime I cobble together breaks here and there, sneaking them in, rationing them.

If we’d been told about these resources much earlier, we’d already have them.

But now I wait, like Charlie Brown, not really believing Lucy will keep the ball in place, but not being able to give up hope completely that this time things might get a little better.

Shiny’s main teacher may not be allowed to teach at the beginning of the school year because of a snafu with her license renewal. Which means she will start a new school with a sub. This fills me with no confidence whatsoever. God help me if I have to pull her out.

Until DDS approves, the most likely resource for Shiny to have after school care…. is from the same people who sent that note. Color me not impressed.

 

Ehlers-Danlos syndrome

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I find myself going through a lot of stages with grappling with this diagnosis. Most of them involve anger, rage, even… Not at the syndrome, but at how I was treated as a child. I keep flashing to things… like having pronounced leg pain and not wanting to walk, and being told I was “making it up for the attention”. I was four.  Being the slowest runner in any class… and being told I was just lazy and that I needed to “try harder”. I’d try harder…and my ankles would go out, and I would fall, and then I’d be told I had done it to get out of running, and that I was making it up.

“You’re so flexible.” Yeah. Great for party tricks when you’re a kid… as an adult, showing off that flexibility hurts every time. I guard everything, and become paradoxically stiff because I’m putting so much energy into holding myself together. It did not dawn on me, oddly enough, until I was in my 40’s, that this is different from how most people experience the world.

IBS… gut is made of collagen. Mine is wrong. IBS is common in EDS.

Allergies (see gut is made of collagen and mine is wrong…)

The stretch marks that riddle my body. The weird texture at the bottom of them.

My fingers… handwriting always terrible, told I wasn’t trying hard enough, wasn’t concentrating enough.  “You’re holding the pencil wrong”. I fix my grip, my finger stays for a moment and then bends backwards. I adjust to something that sort of works. I’m told my handwriting is terrible and I’m holding the pencil wrong. Typing is a godsend. Typing is easy. When I can type my notes, I can actually take notes because I’m not pouring every single ounce of attention I have into holding the damn pencil.

Fibromyalgia… except that unlike most people with fibro, I don’t have constant pain. But every other symptom. Oh, right, those are all co-located with EDS, which explains more than the fibro.

You know solarcaine? Yeah, that shit never worked on me much. Nor does Lidocaine, or novocaine… The doses they’d use to get something approximating enough numbness to do dental work were terrifying. The epidural would have been funny in its ineffectiveness if I hadn’t been in so much pain. It worked…for about 15 minutes. Then not. Oh look… EDS involves aytpical responses to medications. Huh. Funny, that. It’s not just being a redhead.

Going to physical therapy feels like whack-a-mole… we get everything aligned and something else pops out. Much of my time there is spent with the PT pushing my joints back into the socket properly. They’re not VERY far out of alignment… but enough to cause excruciating pain. And people wonder why I don’t want to move.

“Your cervix is very friable” says one doctor… it bleeds every time they do a pap smear. “It’s very sensitive” says another doctor… every touch causes contractions. I spent most of my periods as a teenager curled up in a miserable ball. “You have PID” says a nurse midwife doing a pelvic exam that causes me pain. No tests come back positive for anything, but I wouldn’t hurt if I wasn’t a “bad girl”. They give me antibiotics and birth control pills. The pills nearly kill me. They help the cramps, though.

“Your skin is so pretty,” gushes a drunk woman as I stand, age 17, waiting to float down the river for an event. I don’t know what to say. “It’s like velvet she says” and starts to reach towards me, the woman with her pulls her away. I am nonplussed. My “pretty” skin is also highly prone to rashes, scars a little funny, and I’ve had keratosis pilaris since I could remember. All those things are common in people with EDS.

“Your cervix was so fragile,” said the doctor, “That I couldn’t keep a clamp on it. Your uterus was falling apart as I took it out. I’ve never seen anything like it, and neither had my assistant.” Later, she says, “Oh, I see the problem. The stitch was tearing your skin.” I suspect that if she’d known the diagnosis at the time she would have stitched me very differently.

“Are you sure it’s not a psychological problem,” asks a well-meaning family friend who is chronically short on tact.  I stop spending time with him. I stop spending time with a lot of people.

“You should just go to bed earlier.” I wish. My body’s fucked up sleep cycle thinks that if I sleep before 1-2 am, I must be napping, and wakes me up after a couple hours. Interestingly if I lie down for a nap at 10 or 11 in the morning, it is easy to sleep for four to six hours. Sleeping hurts though… if I get enough sleep my body hurts more from lying in bed that long.  My goal is 2 am. But brain fog sets in and it is hard, hard to get up to bed sooner than 3 or 4. If allowed I can easily sleep for 8 solid hours if I start at about 3:30 am and am not disturbed. I have small children. Hah. “But if you just had more self-discipline….” And then I read “sleep disturbances are common in EDS.”

I spend my energy constantly in holding myself together. If I get distracted, I get hurt. If I am happy, I get hurt. If I exercise and am not scrupulously careful not to overdo it, I am toast for days.

The human body is 80% collagen. And mine? My collagen is all a little bit wrong. Welcome to the grand unifying theory of what the hell is wrong with me.

Riding the respite roller coaster

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So I’ve been drowning a lot. And a local disability advocacy worker threw me a lifeline by suggesting Shiny be enrolled in a camp that does inclusion for special needs kids. I looked into it, they offered to do a scholarship for the first week, it looked like such a good idea that I paid out of pocket for a second week.

Shiny was excited. Great. It involved swimming and dancing and a lot of free play.

First day was fine, exhausting for me because I ended up doing a meat sort, but that was okay, I had 10 days of respite lined up, 9 hours a day.

The second day was wonderful up to a point… I ended up taking a long nap with Miles, getting things done. Hubby came home to a happy wife and a cooked meal and Shiny was tired but that’s okay.  The point at which it wasn’t wonderful was when her second week of camp (different camp) called and said Shiny would not be able to go because the camp was wide open and outdoors and there would be no way of keeping her safe in that environment. I was sad but wanted to enjoy the rest of the week.

Third day, I had an appointment in the morning that fractured our nap, the appointment was a dud anyway as we were going to have a plug installed near our fireplace and they couldn’t do it for under $800… But I was going to have a nap in the afternoon with Miles anyway and make a nice dinner… and then Camp called.

Shiny was refusing to wipe her own butt, and “their staff isn’t trained for that”. She was acting tired and didn’t want to participate, so I needed to come get her, she wouldn’t be allowed back.

That 10 days of respite.. had turned into 2 1/2. And was done.  Over.

I flipped my shit when I got off the phone. My mother went and got Shiny, and advocated for Shiny to return the next day for a shorter period of time. I called crisis services for the local county office of developmental disability services (DDS). There were a lot of phone calls and a lot of messages and I cried a lot.

Then I got a magical call back from the regional crisis intervention coordinator.

Shiny will qualify, possibly as soon as next week, for $1000 per month in respite funds.

In 3-6 months, because Shiny is currently “at risk” for losing her placement (i.e. if we can’t figure out lasting solutions that make it possible for us to care for her in the home without her damaging us, we will have to look at therapeutic foster care, I am THAT done), a new state program called the “K-plan” will kick in, and Shiny can be considered a family of one for purposes of applying for aid, such as SSI and Medicaid. Remember, we currently pay 1500 per month for insurance, which will drop almost by half January 1, but we have NEVER been able to have dental and vision coverage for Shiny, which has meant many thousands out of pocket.  We may also be able to get housekeeping help for the “extra” burdens that Shiny’s conditions create on the level of mess here. (Me taking time when I’m not keeping an eye on the living room often results in Shiny creating a poop disaster. Then I spend an hour or two cleaning up a poop disaster. So her effect on the house is twofold–without a break from her, nothing gets clean, ever, unless I do it after bed, and I don’t often have the energy to do it then because I’ve been dealing with her all day).

I got plenty of sleep and a break from Shiny over the weekend, two days in a row. By the end of the weekend, my co-host for the co-op saw me and was blown away by how much better I looked than the last 20 times she’d seen me. By Tuesday I looked in the mirror and said, “Oh, there you are!” to a person I hadn’t seen in years. I was starting to feel human. The level of devastation at having my two weeks turned into two days? I don’t have enough words to describe it.

But… with $1000 per month, Shiny can go to after-school care every day… at the special needs center where they presumably know how to wipe butts. No-school days will be covered. And there will be enough left over to allow some respite time on weekends as well, so hubby and I can actually spend some time together.

I am enraged at the shitty implementation of “inclusion” at the city program. But it got things going and helped grease the gears at DDS… normally there is a 3 month wait list, but they are expediting us. I could just about hear steam come out of the coordinator’s ears when I said that no one had referred us there, and I had learned of them by chance just this spring.

How very different her toddler years might have been.

Having just Miles around is a dream. He is so *easy*, and we get into a rhythm so nicely with each other.  I was so looking forward to having that…  And we will, it will just be a few weeks.

It’s like there’s still a rhinoceros sitting on my chest, but at least I know it will be leaving soon. And without us having to put Shiny into foster care.

It was something I hated contemplating, but I just didn’t know what else to do. She is abusive and violent and she will likely always be abusive and violent and my responsibility, and I don’t want my son to grow up bullied, and the fact that when she comes near I cringe and say “don’t hit me” is just sad. If she’s out of the house from the time she wakes up until dinnertime, we only have to deal with 2-3 hours per day and that I can do.  I can be the parent I want to be for her, if I”m not having to defend myself from her all the time. If I’m not pouring everything into just trying to minimize the amount of destruction she wreaks.

The morning of the day they sent her home, as I was getting her ready to go, she said, “Camping time. Oh boy. Can’t wait.”

I am still so angry with them.

Words

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I can’t list them all, but here are some of the words and phrases Miles uses at almost 19 months:

Pees (please)
Gack-oo (thank you)
Sowwy (sorry)
Kissss
Ug (hug)
Mah! (mwah, when kissing)
Ow, Ouch
Hot
Cold
Wet
Water
Pee
Poo
Yucky
Dapoo (diaper)
Showah (Shower)
Bah (bath, sometimes an alternate pronounciation is used, see below)
Potty
Chayah (Chair)
Whee-chay (Wheelchair)
ah-SY! (outside)
Dock (dog)
Cah (Cat)
Bird
Bee-Bird (Big Bird)
Count
Buh-FY (butterfly)
Ahmo (Elmo)
Cooookie (Cookie)
Mahter (Monster)
Zoe (Monster and neighbor cat)
Tari (Atari, the neighbor dog)
Reh (Red)
Owah (Orange)
Lellow (Yellow)
Gree (green)
Bawoo (Blue)
Poopuh (Purple)
(he’s still parroting colors, but is starting to get the concept)
Fwoh (frog)
Hop
Burip! (ribbit)
Mouw (Mouse)
ee-Yow? (sound a dog makes…lol! Also cats, but he often says “Dog, Meow”)
Mama, Mom, Mommy
Daddy, Ah-oo, Dad, Dada
Sissy, Shiny, Niney,
Kay-yee
Grampa and Grampa (Uses same word for both my mom and dad…lol)
LURRRRRR (his cousin Laura, whose name is always yelled)
Cash (Cas, our former roommate)
Shut (shirt)
Pants
TSHOOO (Shoe)
Bock (block)
Duck
Ball
Toy
Book
More
Nap
Bet (Bed)
Yes
No
Mine
Me
You (and he’s starting to use these correctly about 70% of the time)
Dink (drink)
Eeee (eat)
ongy (Hungry)
TSHEEE (cheese)
Geeps (Grapes)
bawoobeyyey (blueberry)
Booger (Burger)
Sawsee! (Sausage, but also he uses the same for music?)
Eck(Egg)
anana (banana)
BUM! (plum)
Peas (and he means it–freeze dried peas)
Angy-burr
Bahnee
Shiny Tie (Signing time)
Run
Walk
Jump
Spin
Win! (wind)
Ky (Sky)
Go (and Go outside, go other places)
Stop
Barfoom (bathroom, lol!)
Uhstays (upstairs)
Gay (gate)
Nefick (necklace)
Boorsh (brush as in teeth)
Head
Eye
Ear
Foot
Piggies (Don’t think he knows they’re actually toes yet… oops)
bayeebunin (bellybutton)
Boop! (boob)
Noursh (nurse)
Neeepo (nipple)
Muck (Milk)
Peen (yep, that)
BALLS
Butt
Butt (Bus)
Butt (Butter)
Butt (Bath)

And today, I’m pretty sure he said, “Shih”.  And meant it… Shiny had just crapped everywhere.

So that’s more than 100 words off the top of my head. He does plenty of “Go ah-SY, go barfoom, Gack-oo MUSH (thank you very much)” and “all done/all gone/no mine” type phrases.

Every day he’s learning many  new words.

18 months, 8 years, 20 years…

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Miles…. language abounds. I put Signing Time season 2 on Shiny’s iPad, and he is thrilled and picking up everything. “Win? Ky? Shining Tie! PIN!” (wind, sky, singing time, spin, the last usually accompanied by him turning himself in circles until he falls down.) The other night he woke in the night, a rarity, and cried… I came in and he said, “Duck. Duck. Meow.”

I blinked for a moment and then said, “Dark, not dog. (he’s constantly mixing up dogs and cats).” Then I pulled back the curtain to allow a little moonlight in, and he agreed, “Dock. Boop.”

I went downstairs after obliging him by nursing him, and he was quiet for a bit, then I heard crying and, “Dapoo? Dapoo?” so I went back up to change him. Found that he wasn’t poopy but had gotten some crumbs in his diaper that were chaffing… changed, rinsed and voila… he went to sleep without bothering to nurse.

Shiny’s summer  vacation sucks rocks. Even the parts where she’s in school are exhausting. Last week, by Friday I was 15 hours short of sleep over the course of 5 days. I got enough sleep over the weekend but it barely made a dent. So, so rough. She was being gone for 5 hours a day but I had to ask them to cut it back because the morning commute was a whopping 88 minutes long. Insane for a young-for-her-age 8 year old to be on the bus that long. She was starting to have accidents, plus they weren’t feeding her often enough at school. I was the squeaky wheel, got her day shortened and food opportunities increased and voila, she stopped pissing on things and started enjoying school. But it means that she’s not gone long enough for a decent nap for Miles or me, and there is no physical way for me to get enough sleep since I have to get her up at 7 and on the bus at 7:30. Going to bed before 1 am is futile for me–I will wake after 2-3 hours and be up for the rest of the night. So the week sucks the life out of me and I catch up on the weekend, which fails miserably when hubby goes out of town for the weekend. The last time he was gone for the weekend by the end of the second week with not enough sleep I was very near homicidal and suicidal at the same time. He will be gone for much of the weekend two weekends from now, and I am not looking forward to it.

Kailea is finally settled in a place that is pretty good for her, her job is working out pretty well, and she’s off to the south of England in a few weeks to visit her girlfriend for the first time. We do things like going to movies together. It’s nice.

I keep reminding myself that this summer is logistically the hardest things will ever be. It is challenging to get both kids out of the house at the same time because Miles runs and Shiny flops and they do it in different directions. Mornings to the bus go pretty smoothly but other than that it is a struggle, always.

Much time is spent fighting my own inertia. Or succumbing to it.  I strongly dislike spending the majority of my time as the only adult in the house. I miss K, I miss Cas. I miss having the freedom to run to the store or to physical therapy without dragging the kids along or waiting for the evening or weekend. The last time I took Shiny and Miles to Trader Joe’s Shiny pulled all the forks off the sample counter and I had to put all the groceries under the cart to keep her from screwing with them.

I feel demoralized a lot of the time. But the kids are both alive and without too many bruises, and they both have sufficient food and I clean their butts regularly. So not a total fail.

Shiny bit me about 5-6 weeks ago, on the chest. I still have “fang” marks there… it is healing really slowly. Every time I look at it I am reminded at how little control I really have of my life.

Ten Years

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Crossposted from MDC

The milestone passed unnoticed, another day of nursing among many.

My son turned 18 months old a few days ago, on July 2. And that day marked 10 years of breastfeeding in my lifetime.

When my oldest was born (20 years ago as of a few weeks ago), I thought I’d nurse her for maybe 8 months, maybe a year. That stretched without effort to two, then I set some boundaries and we went on to 3, and she went on a trip for a week or two with her dad and came back wanting boob. At 4 I weaned her for 2 weeks and she urged me very eloquently to let her comfort nurse, and that went on for another 2 years. I’d ask her when she would wean, and she’d say “When I’m six.” Always, “When I’m six.” She was 5 years and 364 days old when she nursed her last, a few quick sucks and a pat on the breast and she was done. She’d come in putting blisters on my nipples and went out as gentle as could be.

Her sister, born over 8 years ago, came in like a lamb, lapping at the milk that spilled from my breasts but not sucking, and after 5 days of “easy” she was weighed and all hell broke loose and nursing became an arduous chore. I nursed more often at first, that kept her from losing but didn’t make her gain, so finger feeding and bottles followed every breastfeed, I would weigh, nurse, weigh, pump, feed until she’d had the minimum amount that would keep her gaining well enough to keep the doctor from pushing formula. She’d been gentle because she was born with no suck at all, due to a chromosome problem we didn’ t get fully diagnosed until she was 7 weeks old. Shortly after that, bottles started making her gag, so I went from the arduous pumping schedule to manually expressing milk into her mouth at every feed, and things got easier for a little while, though I could never sleep, never relax when she was at the breast. At 5 months she learned to suck, and I started to relax… but she stopped gaining weight. At 6 months old she started to chomp… oral defensiveness kicking in and teething, but with no rhyme or reason or way to predict… and at 8 months she got teeth and didn’t stop biting. There was no formula on the market she could tolerate, so I persevered. My eldest had been allergic to dairy so we held off on plain milk for a long time… and she kept biting. Every day just about, and sometimes multiple times per day, she bit me. Sometimes every feed. Finally, desperate, and fighting always the urge to push her away, fling her across the room whenever her jaw locked on my breast, I weaned her at age 2 1/2 years, just about exactly.

My youngest, my son, was born 18 months ago, and did okay but not great. My reflexes of massaging and hand expressing hid a problem… posterior tongue tie. I was sore, and it didn’t get better, kept getting worse, but he gained okay. I had PTSD type flashbacks when he’d clamp down, when it hurt, but giving up was not an option–I’d now had two children who could not have tolerated formula as infants, and I wasn’t about to find out if the third was following in their footsteps. At 2 months I asked for help… and found out he had a grade 3 tongue tie, his tongue locked tightly to the base of his mouth, couldnt’ even get a finger under it. We got it fixed and things got better…but never, ever perfect. I don’t know how long he’ll nurse, but he still nurses now, at 18 months old, and I don’t believe that weaning before age 2 is an acceptable option if I am capable of nursing him, so we’ll see how long after that we make it. He’s starting, finally, to learn better manners. He asks “please” rather than just shoving on my breast, sometimes. If he can learn to be more gentle, to be kind, I’ll let him nurse as long as we both want to.

I enjoyed nursing my first after that first horrible week with her. I can’t say I’ve enjoyed it much since. But I don’t do it for my own pleasure, and anyone who thinks I do has a screwed up notion of what pleasure is. I do it because it is the right thing to do for my babies, it is what they need. My soy and dairy-allergic eldest thrived on mother’s milk. My middle child who cannot have added citrates and who needed every single extra stem cell and IQ point I could give her is doing better than they ever let us hope. Breastmilk may well have saved her life–there are not many children with her syndrome and a significant percentage of those died very young.

My little boy, though… he loves his “boop!” and even when he’s driving me crazy and making me feel touched out and panicky…. I still manage to find moments where it is comfortable enough, where I can watch his eyes flutter closed as he drinks his “mook”.

People always say that they are sad when their last baby grows out of a phase or hits a new stage of development. For the first time as a parent I’m not wondering when he’ll hit a stage or wishing he’d develop faster, but likewise I don’t regret that he’s moving past babyhood. When he is done nursing, I will be done with nursing as well, and a good long run of it.