Stinkin' baby!

Little Bit and Bubba snuggled in Mama's bed

For the first time in my existence as a mother, I've got a baby who is sleeping through the night at less than 18 months! Less than a year even! It's the weirdest thing ever. It's been great. So much sleep, such peaceful mornings, no worries about sneaking out of bed without waking him to take my shower. Lovely. But it's come with an unexpected downside. I was snuggling the Little Bit the other day, nuzzling my nose in his hair, and I noticed his scent has changed. Hmm... that's weird. Where's that subtle, sweet, musky scent I remember? Then I realized.... he had smelled like me from sleeping with his head in my pit for the first 8 months of life. The smell I loved about my baby was my own pit stink! That's a bit awkward. Or is it?

I remember back when I was 7 or so visiting a neighbor who's dog had puppies. Her mom warned us not to handle the new pups or they would smell like us instead of their mother and she might reject them. Over the years I've heard the same warning for all manner of mammals from kittens to goats. It makes me think, while we humans would never reject a kid for not smelling of mama, that maybe, just maybe, I'm not so crazy for liking that he smelled like me. It was an aromatic love letter bonding my baby deeper in the depths of my heart. A lovely combination of sweaty mama and milky drool. And if that makes me awkward, so be it! I'm going to treasure that scent in that phase of babyhood for the rest of my life. So thank you, Little Bit, for the memories (and thank you even more for the sleep!)

My 4th of July Explosion!

Happy 4th of July! And it's a very happy 4th for me. Not just because it's a holiday where we celebrate our independence and freedom to play with fire, but because I'm starting to feel better! After three weeks of being down and hardly able to function, I finally caved and went to the doc for a look-see. We ran some blood tests and all looked good, so we're chalking it up to my old friend Sjögren's again. He got me on a Medrol dose pack and after two doses I'm feeling almost myself again. I've still got a lot of joint pain, but at least I don't feel as weak and befuddled.

So now on with the celebrations! .... oh wait... no clothes... 3 weeks of being down has gotten me a little behind on laundry. Looks like I'll be handling the explosion of clothes in my bedroom before playing with fireworks this year. But that's fine by me! I'm just glad to have the strength to do it finally! So, at the risk of being way too open, I thought I'd give you all a little glimpse of what living with Sjögren's during a flare really looks like. Behold, My bedroom laundry corner!

And if you and I survive that explosion, I'll post an update tomorrow with an after pic :)

A little dream.

I've been down with a bad Sjögren's flare for the last couple of weeks now (that bike ride really did me in!). I've only managed short grocery trips, but that's been alright. I tend to shop ahead when I have strength and our freezer and cupboards haven't run bare, even if we have had to be a bit creative with our meals lately. The really sad part has been my housework. I have the heart of an old-fashioned homemaker. You know the sort: enjoys doing dishes, sewing, gardening, raising kids, and generally being both a practical and financial benefit to her family. So when I'm down, the things I usually do go un-done. My darling husband jokes that what we need around here is a second wife to fill in when I'm broken. Truth be told, I'm half tempted to agree with him!

Now, we're good Christian folk who don't take to the Old Testament nonsense of multiple wives, but extra hands would be nice. Sometimes I like to sit and daydream that out there is a middle-aged Christian spinster woman who would be willing to be a live-in helper in exchange for room and board. Sadly, I'm fresh out of able bodied aunties or unemployed cousins who could fit the bill. And I doubt I could find someone in this day and age who would be willing to work for the practically nonexistent wage involved. Because let's face it, it's a LOT of work tending to a husband, four young-uns, four ducks, a home, a garden, and a new kitty (yes, I'm crazy enough to have insisted on a new kitty to replace our old one). Still, you never know. There may be someone out there with a God-given burden to serve who would love to help me care for this crazy, wonderful family of mine. Someone who would love to sit and have coffee and a quiet bit of Bible study in the morning with me before breakfast, work beside me through the day so I don't overtire myself, and help me brainstorm and remember things when this illness robs me of my formerly keen memory. If you feel so led, go ahead and drop me a line :)

In the meantime, I may need to get some steroids or stronger pain meds and see if that helps me get on my feet and back in the swing of things. And my doc says he wants me to see a neurologist to see if we can't figure out why my memory is slipping. Praise God it's not worse than it is, but it's still no fun to be epically forgetful!

Helpless?

In this modern age of self-empowerment one is never expected to be helpless. Images of whiny little women in bubble curls and heels fretting over the possibility of a chipped nail come to mind. Women have pushed through, toughened up, and moved on from that era, right? Right? So what do you do if you happen to be truly helpless? What do you do if you've pushed through to the point even your pioneer great-grandmothers would be proud, grinned in the face of terrible pain, and compensated for natural weakness with exceptional wiles and still need help??? It's a question that plagues me often.

Breaking news! This isn't true ↑And it's harming truly helpless women!

The first time I needed help was after D was born in '09. I was a single mom then and just beginning to figure out my health problems. I had a tiny 2 bedroom apartment, no job, and still couldn't manage to keep house and mind the girls at the same time. Fortunately, I was fellowshipping with the local Old German Baptist Brethren and the ladies there came out a couple times a week to help with housework, and even took the girls for the occasional weekend sleepover to help me catch up. But I didn't look sick. I looked lazy and depressed. So eventually there was a bit of a talking-to by some of the concerned Older Women in the church (whom I still love and hold in high regard) and my mother. I was pretty young in my diagnosis, but we'd started to figure out what meds would work, so I figured maybe I was being lazy and depressed. I had been contemplating going on disability, but instead I decided to try and up my game and be less of a burden. Within a few months I found a job at Amazon, and a few months after that left the church. I still wasn't managing well at home, but I really didn't want to burden anyone with my illness since it's wasn't going away and was only  likely to get worse as I age.

On the upside, leaving the church freed me up to marry again, which is against doctrine there (a point of scripture which I was always a bit back and forth about, considering various scriptures and their interpretations, but that's for another post). And marry I did! I found my husband, G, while in training to become a Kindle specialist and nine months later we were wed. He really understands the burden Sjögren's has placed on me and is extremely accommodating. Let's face it, he spoils the heck out of me when he can, and hugs the stress out of me when he can't. But this marriage has also brought with it two new baby boys in rapid succession and the pregnancies have taken their toll and made my condition worse. Not as bad as some have it, but still as bad as I've ever been. I've also
come to find that my husband is unable to handle the stresses of both work and housekeeping. Not unwilling, but unable just the same.

That brings me back to my question: where do I turn for help? When the laundry is piling up, the floors are covered with randomness and dirt, the lawn needs mowed, the drive needs weeded, the dishes need done, the food needs to be prepped and cooked, and my children need loving attention, what do I do? I usually break down and cry.

At one point in time, ages ago, folks were much more accepting of the helpless people in their lives. Having a poor constitution was excuse enough for being unable to do the things ordinary folks do. Neighbors and family helped out, pitched in, and showed some pity. Now, in this advanced age of medicine, folks lend more advice than practical help. What I should take, what I should eat, how I should exercise to get myself back up and running. Anything to help me take care of me and my family. One thing I almost never hear is "I'm sure you're doing everything you can already, so how can I help?" Because, readers, I am doing everything I can already. I'm taking everything I can safely take, I'm on a very restricted diet, and I'm exercising to the maximum I can do safely. Other advice I often hear is that I should contact the government/social service agencies for help. After all, it's their job, isn't it? Wwweeeellllll..... yes and no. You see, I contacted several government/social service people. I even applied for disability (still working on that). And the only help they could offer is 'personal care' such as bathing, help with toileting (ewww, so not needed), help with meals for me only, but not my kids, absolutely NO housework as that's too much of a burden for even them to handle.  The second best thing I could find was a group of local ladies who could help out during a hard pregnancy with once-a-week light duty stuff. Each week the house would be just as bad as the week before because I hadn't the strength to keep it up in between and let's face it, kids sense when mama's broken and take advantage of it to wreak havoc. That's not to say I let them run amok, but being able to provide the hand-in-hand discipline necessary to teach them to tidy up after themselves is pretty hard when you lack strength to keep up with them.

So here I am. A disabled mom with a 7y/0, 4y/o, 23m/o, and a 7m/o nursling, still helpless. Still pushing through, still tough, but still in need of help. Now, dear reader, I don't write this as a personal plea for help (though offers will not by any means be turned down), but as a general plea to stop and think. There are so many in this world with chronic illness, both young and old, mothers, fathers, grandparents, children, and they need your help! Not your sympathy, not your advice, not your pity, not your criticism, just your help and loving companionship. It's a lonely, difficult place to be when you're stuck in a home you love and see it crumbling around you. Too weak to manage, too weak to get yourself and your children to church or the park or parenting groups to make meaningful connections with folks who might help, if they knew you better, too weak to keep your children from having to grow up a little faster than all the other kids. Make it less lonely. Come over for coffee and a visit. Offer to run to a doctor's appointment or go grocery shopping and help with the kids. Offer to ride along to church and sit together. Offer to come over and lend a hand with the housework. Never show disdain, never expect it to be better next time because you helped last time. If your friend has a good day and is able to get up and out and show some energy, don't think they're better! Don't think they've faked the weakness! Celebrate with them and help them have a good time while it lasts! Because I guarantee that with chronic illness, it won't last for long. Please, reach out, connect, and help!

Culinary dilemma or Homeschool lesson?

Today in our homeschool science lesson, we studied the life cycle of the Indian Grain Moth. Not that I particularly wanted to study it, but in order to make dinner, it kind of proved necessary.

Here's a little back-story: after a very long day of getting very little done, I decided to go to the store for a deli chicken, a cornbread mix, and babyfood (totally spaced on the babyfood & had to improvise, but that's not important right now). We get back from the store and I ask M (7y/o) to start 3 cups of rice in the rice cooker. Easy enough. She'd done it dozens of times before. Measure, add water, plug it in, flip the switch, done. But not so easy tonight.

Here's a little back-back story: Ever since we moved into this 60+ year old house, I've been battling Indian Grain moths. They'd eat through bags of rice, beans, cereal, spices, you name it. They even ate my cayenne pepper, and that stuff's supposed to be nature's insect repellent! Every time I'd bring home a new bag of something yummy I'd have to put it in a glass jar to keep it safe or it'd be fair game to these little stinkers.  As of today, this plan was no longer working.

Apparently, the bugs have figured out how to crawl in my metal screw-topped glass canister into my rice. AAARGH! Well, I wasn't about to let them ruin my dinner plans, even if my 'planned' dinner was only haphazardly thrown together twenty minutes before. So I did what I'd done in ages past and thoroughly (and I mean THOROUGHLY) washed the rice. Simple. Waste not, want not. Just like Grandma would've done (or more likely great-grandma, as she was the cook of the house a-way-back in the Depression). So there. We had rice for dinner. But what about the rest of the canister? I couldn't let those little creepy-crawly larvae ruin the lot of it. I'd tried that once before and wound up with a jar of seeds that looked more like an ant farm that had been attacked by Spiderman than something fit for human consumption. And throwing it out, well, with six mouths to feed on a single pinch-every-penny-till-it-screams income, I wasn't about to ditch $10 worth of rice!

My solution? Dip out the rice a quarter cup at a time into a loaf pan, sift through and pick out the little critters, put the rice into a fresh container, and let D (4y/o) go to town smashing bugs. Worked pretty well, too. I think we've got them on the run. D even made up little cute ditties about bugs dying, and we all got to see the larval, pupal, and adult stages of this fascinating (and irritating) little bug. Needless to say I'll still wash my rice before cooking just in case... and after this probably won't have anyone brave enough to come to dinner... But, dear friend, if you do courageously cross our threshold to dine in our humble abode, rest assured: I won't be serving you rice!

Easy Ride...

Today is Thursday. Thursday in my house is Project Day. Sometimes the project is 'sneak in an extra nap', but today's project was a little more ambitious. Today's project was to fix the bikes! We had invested in super thorn resistant inner tubes to replace the shredded sieves decaying in the girls' tires from last year, but they were laying about gathering dust for several months now. It was time to take action (mostly because the boys woke up from their nap before I could manage sneaking in one of my own... sigh!)

I pulled M away from her lessons early (yay Mama!) and had her and D fetch their bikes and our brand new, never before used kiddie cart from the back room. We only misplaced two wrenches, three nuts, and a rubber washer, but we got found them all again and got it done! We changed two inner tubes, hooked up the cart, and added a cupholder to my fancy hybrid Mom Bike. Somehow the boys didn't even meltdown in the process. Knowing my strength is somewhat dubious after suffering a nearly two week major flare-up of Sjögren's, I insisted to the girls that we only go up and down the block a couple of times.

Needless to say, our enthusiasm for our nicely renewed machines got the better of us and we soon took to the open road! Er... well... took to the neighborhood at least. Both girls insisted they were up to a trip to the park, even D who is still on training wheels, so I, like the sucker I am, indulged them. It was a fair ride down. A sunny day, gentle breeze blowing, not too hot, and only about two frustrated explosions from D per block on the way there. But we made it! Bubba (aka J age almost 2), and the girls played, the baby (aka Little Bit) and I sat and made faces at each other, then the wind came up.

If you've ever been to our neck of the desert, you know that the wind around here can be nastier than møøse bites... and everyone knows møøse bites kan be pretti nasti. So we loaded up and headed back riding into the wind with sand stinging our eyes. M, being tough as leather, just pedaled on through, but by this time my legs were getting rubbery from lack of exercise and poor D was being literally blown backward on her bike as she struggled to pedal against the gale! And yet, the stoic mother must never show weakness in the face of a frustrated and panicky preschooler! I therefore encouraged, cajoled, and empathised to my wits end and eventually she got in a good rhythm and pushed on through to make it home again. It was a bit of an adventure, but a good time was had by all.

Still, I'm already starting to regret it this evening. While it's imperative that I get some exercise, my body doesn't always respond to it very well. Joint pains are starting to burn and my arms are so weak that typing on my computer feels almost as hard as pulling that kiddie cart with my bike. Sure, I could've better used my returning energy to, say, get caught up on laundry or tidy the nursery, but boy howdy! was it worth it to get out and RIDE!

The Requisite "Why am I Blogging?" Post

Search for disabled mother. Go ahead and pop on out and search, then pop on back. What did you find? Probably not much about being a disabled mother. Tons on being a mother of a kid with a disability, or being the daughter of an elderly mother who is disabled, but almost nothing about being a disabled mom. I know I can't be the only one out there, so I figured it was time to give us a voice.

Allow me to introduce myself: I'm Erin and I was diagnosed with Sjögren's syndrome in 2010. To boil it down, I appear perfectly normal, but routinely suffer severe joint pain, brain fog (more on that one later) chronic dryness (eyes, mouth, nose, and everywhere else one would expect to be... not dry), and worst of all debilitating bouts of fatigue and muscular weakness. BUT that's not how I usually introduce myself. I'm usually Erin, wife to G., mother to M, D, J, and Z ages 7, 4, almost 2, and 6mo. I'm a conservative skirt-wearing Christian woman who is also a super Geek, minor health-nut, free-lance seamstress, and somewhat musically inclined. I also love gardening, dream of urban homesteading, and have four backyard ducks and a gray tabby cat. The ducks are named Breakfast, Lunch, Dinner, and Chuck (just in case they don't produce eggs & wind up on the table). The cat, well, his name depends on who you ask. I just call him 'Cat' so we'll go with that for now.

So how do I, who have all this going on, manage to do all the things I love, raise four children, support a wonderful husband, and nurse a baby while hindered by a disability? Long story short: I don't. I do many things in a mediocre fashion and often rule the roost from my armchair. And yet I love my life, more often than not! Sure, there are many ups and downs to being me, but I'm slowly learning to cope and even to laugh from time to time.

Alright. Let's start this blogging journey as I bare my soul, expose my weaknesses, and show how a real-life disabled mother does(n't?) it!