Faith.

Such a small word, isn't it?

Faith in something, it's belief in things unseen or unproven as well as belief in what you know to be a truth. Truth is also a pretty slippery word. Where is your faith? How does it balance between the seen and the unseen?

I've had faith in a lot of dark moments as a parent. Things will work out. Somehow, somewhere, things will keep on. The sun will rise tomorrow, and all of us will be alive when it does. Whether we sleep, whether we're walking the floor with a sleepless child, whether we are driven to our wits end and lock ourselves in the bathroom crying after the little darling hellions are tucked into bed. We start at point A, we will arrive at point B and the distance between the two is not always a straight line. Nobody ever said the world would be easy. Nobody ever said that it has to be hard, either.

I've learned to always look for a bright side to every circumstance, and to try and frame it in my mind as a not-bad thing. My daughter doesn't communicate much? She teaches me to be more observant, and to truly cherish every glance she gives me and every word from her mouth. In the past month she has begun to take the "kiss" game to a new level. In case you've never played it, the kiss game is done thusly: lift your child's elbow, knee, foot, hand to your mouth and kiss it. Say "kiss" in a happy voice while making eye contact. It was one of many ways I got her to learn body parts, while communicating at the same time. As she learned her body parts, she also learned about kisses. She laughed, had a great time, and there was full engagement on her part. Periodically she would even come to me and sit on my lap, lifting her elbow to my mouth repeatedly without any other communication or engagement, and wait for me to kiss it. When I would do so, she would then meet my eyes. And laugh.

So her new thing is to come over to me, take my head between her hands, pull me towards her, and pucker up. She says "kiss!" and lets me lean over to smooch her. This is one of those things that makes me cry for joy.

I had faith that one day she would start breaking through this mental wall. It's starting to crumble. Bit by bit, slow progress, and I can see more of the sunshine gleaming through to the other side.

Likewise, I have faith that my son will continue to grow and thrive. It's a slow journey. It will take a lot of time and some sleepless nights and I know I'll cry as much as I laugh. And yet... one day the sun will shine through on both of them and I will see them whole and happy.

It's been a wonderful day. The husband took the kids out this morning, and this afternoon I had them. Tiffany played in the sprinkler as I watered the lawn. She then played in the wading pool for another hour. Total- about three hours outside, with fresh air, and lots of sunshine. She's growing again. I am crediting the fresh air with her happiness. Nothing like being able to go outside whenever she wants to make her happy; it never gets hot enough here that I have to keep her inside all day.

Robbie was less impressed with the sprinkler. He found himself sitting in it's path at one point, and couldn't figure out how to stop it. All he knew was that he was wet, he was being rained on, and he Did Not Like It.

There's a strong possibility that we'll be getting a second car in the next few weeks. Friends of ours are leaving the service, and have decided not to take their truck with them, and what with one thing and another they offered it to us as a going away present. I'm tickled pink at the thought of being a two car family at last. I'm also not counting trucks before they arrive.

Tonight I tried out a recipe from the Saving Dinner website. Herb Braised Chicken Thighs. I made it without the red potatos, but with a generous portion of the carrots, and it turned out delicious and extra saucy- for my bedtime snack tonight I'm going to add a quarter cup of brown rice to help soak up the sauce, and it will be yummy. Blood sugar has been behaving itself lately, and I'm learning more of the art that is keeping my sugar under control. After dinner glucose on the high side? An extra unit. After dinner glucose on the lesser side? A little less of the insulin at bedtime. Half as many carbs as protein in everything as a general rule of thumb.

Hope everyone else is having as good a day as I'm having.

Surrounding myself with bright things, with warmth and peace, seems to help. Lately I've been fighting many things. Depression. Clutter, both physical and mental. The house is getting cleaner again. The children are getting happier again. We're moving on as time keeps going.

Which is good since the alternative is being stuck. "Stuck" is not a nice place to be. It makes us feel trapped in our lives. We can't break out, we see others living and loving and laughing and we can't quite join them. Something I heard a lot when I was younger and going through Major Therapy was "fake it until you can make it". I haven't thought about that for a while and yet today I can see that's what I should be doing to keep going through this time.

As we're getting ready for surgery and all that goes with it, I can picture in my mind what I want to be seen as. Who do I want to be? Is she a shrew, chronically exhausted and snappy? Is she full of grace and serenity and the ability to cope with anything? That is not a question. I'd much rather not be a shrew. So I picture myself as that other person, that graceful woman who loves herself and her family and takes things slowly and calmly with seldom a pause from sunrise to sunset. Someone who takes time to cherish each smile of her children. Someone who can easily cope with all else.

Sometimes, believing in something enough can make it happen.

build a wall
brick by brick
high and wide and deep enough to last
make it with joy
make it with grace
with all the grace given me
to last my lifetime
inside the wall will grow
roses
roses and lilies sheltered from the wind
from the storms of life outside the wall
inside shelters grace and the slight flicker
flame of hope

amber glass crackles
candle flame glimmering
turns the bowl to a ball of fire
glowing with the hope of every night
the promise of every dawn

My grandmother passed this afternoon, at noon, with no pain and a lot of peace.

She'll be missed. A lot. The last of her generation, and the end of an era for me in some ways.

Nursing is more of a calling than a profession. Like anything worthy of being a calling, it's grown an entire culture. There are nurses who take the job home with them, those who live and breathe the caring. It's more than procedures, it's more than holding hands, it's getting through. I've been a patient more times than I can remember. I've seen my share of nurses- both ends of the spectrum from the ones who clashed with my own personality to the one I'll never forget, who I dubbed privately "LTJG Mary Poppins. Or Ann."

There's a nifty new site celebrating nurses. It's aboutScrubs. Not the show, it's a reference to the uniform that's become as indicative of a nurse as the tshirt and jeans uniform speaks of young adults- from college to the hanging out around the house casually on the weekend. One of the areas, showcasing stories of nurses in the field, spoke about preemies- and as everybody knows by now preemies are something that I am particularly connected to.

There are several good articles on this site as well. One on Nurses with disabilities, one dealing with prayer and patients. Is it okay in this world to pray with your patients? Is it a given that once a nurse suffers a disability that may result in the need for accomodations to be made in the workplace, her career is over?

I don't know if there's one right or wrong answer to any of it. But I do know that this is a site I found to be very well-done. Both in format and content, it remains easy on the eyes and the brain.

I love my little monkeys. They are adorable and delightful, even though they're a handful and more than a full time job for me. Even though I'd gladly beat my head against a brick wall from time to time because it would hurt less than the details of what we're currently going through on a daily basis.

Company coming over tonight and I'm looking forward to it. Getting the house whipped into shape for company also means creating a pleasant environment that I can try to maintain the rest of the week. Sweet. Calming. A place that I can happily unwind in when the children are at last tucked into bed at the end of the day and sound asleep without further incident.

These are wonderful days. The stress will pass. The joy will endure. I'm not going to remember the exhaustion that is making me reel on my feet. I will only remember the joy of sweet-smelling children sleeping on my lap, heads nodding over sippy cups, and the indescribable feeling I have when I see them curled up in bed with one finger pressed up against their lips.

It's an incredible feeling, watching the spring rain drip down into the flowerbed. When I drive through town I see lilacs blooming, trees, and azaleas. I see tulips. I see an unbelievable amount of flowering shrubs and trees that I remember from my childhood and to which I cannot put a name.

The damp creeps into my knees and makes me stiff all over, and I don't care because I can see the green in the earth. Last spring it was the green that came over the fields, frosting them with mint icing before the gray of winter turned into the brown of another dry and dusty summer. Spring was marked with drifts of cotton in the parking lots. Late summer marked with tumbleweeds. All seasons dry.

Joke I've heard frequently lately... if you've got a tan, you've been somewhere else. People don't tan on the island, they rust.

Don't know. Might be I'll enjoy rusting for a change. We're all adaptable beings. I'm looking for the best in our life here. Let's go with that.

Ah. May first. The First of May. Mayday. A holiday celebrating the spring, and planting, and the aboundant fruitfulness of the earth.

I may just be too cheery about the prospect. As always, it's payday, which puts me in a generally better mood. I'm planning my grocery trip. My darling husband has the day off so I have the car, which in turn means that I will be able to get over to the DMV at long last and trade my temp tags for real ones. Hallelujah. The title papers came in and went to the WA DMV last week. About time.

The children are happy to see their father home. Not as happy as he is to see them, I suspect. And there is the off chance that I will be granted the ability of the afternoon nap today. Oh, the Afternoon Nap. How I have lusted after it in my heart over the past couple of weeks.

Blood sugar is coming down, insulin is going in, and diet is coming into a new area. Interestingly enough, the diet portion is so much easier to do this time around. I've gotten past the worst of the all-carb, all the time, craving. I get hungry for veggies now. Salads. I'm trying to take a large chunk of my protein in a day from soy rather than animal-based (cause of the cholesterol, which is already high enough). Lots of fluids.

Have a great weekend. The sun is shining here on the island, and the tulips are blooming everywhere we look.

One of the philosophies I picked up with FlyLady was that it doesn't matter if you "mess" up with your diet (or routines, or cleaning schedule) because you can always start over. Every day is new, every hour is new, and you shouldn't write off the whole day or week or task just because you've had a bad day.

Glucose monitoring is a lot like that for me. Never a good number to be seen for a while now. Downright bad numbers, all of them. Some marginally less bad but... still.

This will be fine. I'll get through. We'll get these numbers knocked into shape soon. And then... control will be mine again!

So on Thursday, just after Marc left for Alaska, the darling girl decided to get out of her seat on the school bus and go exploring. With fun and predictable consequences. She tripped, fell, and cracked her head open when she hit the floor. 911 was called. Paramedics were summoned. Stitches were placed in her adorable forehead.

Did she learn anything from this? Not really. She's almost four. This is the age of discovery. Or, at least it was when I was that young. I was her age when I jumped on my bed and fell, splitting my lip open on the headboard and earning my first set of stitches.

Two days later and she's still running around, climbing the furniture like a little monkey, and getting into everything in sight. It is inevitable. These will not be her last stitches, I'm sure. Just the first set. I did, however, pause at Kmart that night, just outside the sporting goods department. They had little pink crash helmets for sale.

Tempting.

Parents want to protect their kids. The temptation to put them in a bubble is there. We know how many things can go so horribly wrong. The kids don't notice, don't comprehend the dangers, don't really care. They are exploring their new world in all it's wonderful glory.

This is a short character piece following Alexa and Samuel. Plot bunnies are hopping around, and they're finally forming a coherent sense of where it wants to go. Maybe there will be a plot, maybe I'll work it up someday into an actual book, but for the moment they're still just two fun people in my brain that pop up in wierd ways.

Feel free to review and comment.
****

She doesn't remember how she got here, to the middle of the gardens in the darkest hours of the night. Her dreams were full of the torches again, ears ringing with the beat of her heart fluttering like a trapped cat. We've been here before, she thought. The trees were bare against the sky. Leaves crunched under her feet. The dirt was wet with frost and it seeped through her stockings.

The moon is wrong, she said. The stars are wrong.

It should have been the Silver crescent, not the new moon. It should have been the southern cross above her, not the northern hammer. How did I get here?

Not even a blanket around her shoulders. Her shift was too thin for the cold. She didn't notice it. The shivers had nothing to do with it. There's blood on her right shoulder and she doesn't know how that got there either but it fits. Somehow it's right that she should bleed.

There's someone coming towards her now. Slow, deliberate. Darkness following. She looks around, finding neither statue nor bush to hide behind. The trees are all too thin to mask her. Heart beating faster. A rabbit now, caught in a snare. He's here, oh gods, he's here, and she's being caught up in a solid grasp.

Wrapped in a blanket. Scratchy wool, warmed by his heat, and it holds her arms. She hides her face in his shoulder. No blood. No smoke. It's a scent she used to know. One that is recognized, deep down, that slows her heart and makes her breath catch in a sob.

"Alexa," he says. "Come back inside. you need to rest."

"Did you see them?" she asks him. "They came for me. I had to hide."

"You don't need to hide anymore," he tells her. "It's going to be alright. Come back inside and let me warm you back up."

"They'll find me if I go back inside."

"They will not take you, Alexa. Word on it. Come back."

She let him lead her, then. Back to the Keep. Back to a room where there was warmth and light and the dreams didn't chase her.

I had, as you all know, breast reduction last fall. The whole process went very well; the only thing I might have changed would have been to use a female doctor. Whether you are looking for a Female Plastic Surgeon in Los Angeles, or one in your own area, it's important to make sure that they're board certified. Look at the before and after pictures- they might be graphic to some, but it's important to know what you're getting and as every woman knows the reality of the physical form can be altered by what undergarments you choose.

My own before and after pictures were interesting. I felt so self-conscious in the before shots. Boobs down to my waist without anything to hold them up. Yet if I did hold them up they looked like saggy half-deflated long balloons, two days after the carnival. After? I have yet to fully get used to the new nipples. And the breasts? Perky! Smaller! The skin irritation from chafing that was almost perpetual is gone. Finally. I have a real cleavage, and my clothes look better, and I feel less self-conscious about myself in a way that hasn't been since... ever. I had a wonderful experience, and because of my earlier abdominal radiation it was a challenge to get a good result. We managed it, however, and all thanks to my own board-qualified surgeon. If this is something you've been pondering, don't be afraid to go ask more questions about it.

I finally finished the crocheted coverlet. Three cones of green and white yarn, cotton, which will wear well and be cuddled by my children during the chilly afternoons/evenings over the next several years. I love cotton- have I mentioned that yet? Cotton is one of my favorite fibers to work with. Readily available, pretty inexpensive, feels yummy when it's washed and dried. Easy care. Beautiful finish.

Next up- the two dozen pair of wool socks. Have I lost my mind? Not so much as some other people, I think. It's certainly going to be a challenge to get them done by September. Here's to fast knitting!

It's nice to fit in. I have often found it hard to fit into new places. One of the keys to fit in is to find other like-minded people. Sometimes that's easy to find, sometimes not so easy. The internet made it so easy to get together with others. The huge range of communities are reaching everyone and making them feel less alone. Even when the tastes are out of the mainstream of their physical communities.

One community that has risen to fill a specific niche is metric motorcycle community. They connect motorcycle enthusiasts with each other, sharing tips and tricks of the trade. There are forums for stories, for personal chats, for buying and selling accessories and parts. All sorts of stuff. I browsed some of the posts and found it full of cool advice and tips about tires. I never would have thought that tires came in such different sizes and features.

It's the beginning of the week. Second week of spring break; next week my daughter goes back to school on the yellow school bus. I'm settling in. Starting a bible study at church. For once I've moved and decided to join this at the right time- the book is just starting. The discussions are forming, and I can be there from the beginning instead of the end. The book is "The Case for Christ". A lot of thinking. I'm trying to keep up with the book. Another first- I'm actually about to stand a chance of getting the homework done every week.

It's a good thing. The whole deal. I'm happy here. The kids seem happy here. My Boy said to me that he wouldn't mind finishing out his career here, if that's the way the wind blows...

In this age of financial hardships it's always interesting to take a peek into other areas. People are so prone to narrowing their views, not seeing beyond their own fields into what else is out there. I like taking peeks into other industries. For instance, I know what my life is like as a renter of a home. I've been involved in applying for housing, the credit checks, the calls to the leasing office when something or other goes wrong, the followup calls when the first dozen get lost, the other stuff... Real Property Management is a peek on the other end. I didn't know all the stuff that goes into owning a home and then renting it out- other than the sorts of things that end up on court tv shows. I skimmed the website and then started thinking, what happens to people who buy a new house, and end up unable to sell their former home? If it doesn't sell, and doesn't sell, wouldn't you try to rent it out? At least get some kind of income coming from it to offset the property taxes and maintenance fees. The thing is, renting out a property can be a large headache, and sometimes a person doesn't want to deal with that either. So, a property management company takes care of it for you. For a price, they'll handle everything connected to the property. If I was fortunate enough to be in that situation, I'd be first in line to have someone else take care of it for me.

Dinner was okay; leftover steak, chopped, simmered in a red-wine-enhanced gravy, and served up with salad and steamed veggies. My daughter did not eat it. After making a face at one taste, she opted for peanut butter sandwich. I'm relatively pleased, though, that she did taste it before turning it down. Maybe I'm starting to get through to her?

The little boy ate well tonight. Coconut milk is agreeing with him. I have cautious hopes of some serious weight gain at his next checkup.

It's wet and chilly again today. The damp is starting to creep in, and I'm thrilled that unlike the last house, this one seems to have fully functioning weatherstripping. I can feel a mental draft, but not a physical one. In the days to come I know I'll be starting to think fondly of my years in the desert. It may have been insanely dry and hot, but it was definitely not cold and damp. I hear that Scottsdale Arizona weather is about 80 degrees. That's not so bad. I could use a shot of that right about now.

On the other hand, how many years have I been bitching about not seeing rain? How long have I been missing real weather, and seasons, and isn't this cold dampness a part of weather? I can't pick and choose what weather I want at any given time. It's not a chinese menu option.

I need to just sit back, throw on another pair of warm socks, and dream of wool. Or other warm fibers. I could be living in Canada, after all, where I'm sure it's a lot colder and damper. Someday I'll be warm again, probably in a few months when the seasons turn. In the meantime I'll just sit here and enjoy the damp, and try not to daydream about handing over my future to the relocation team.

Not as much, however, as I enjoy the lack of draft when the wind howls.

This morning the washer and dryer got hooked up. I now have the power of Laundry. That's right, my super-powers are coming back online after a few weeks of being powerless against the dirty clothes.

Yay me.

The house is now almost completely unpacked- the only things left are the clothes, which is going to be an easy manner of taking out of boxes and rehanging in the closet, and the crafts and books. Books are not being unpacked until bookcases are bought and set up. Crafts are not being unpacked until the closet storage stuff is here and in place to receive them. Next on my to-do list is scheduling the trash pickup guys to come and get the bags of packing paper and flattened boxes. That will be a sweet, sweet day.

I've almost got a decent living space again, not a maze of boxes and junk. This is the sweet part about unpacking and moving in.

Wow. What a trip. We packed up and left Hanford about two weeks ago. I took the kids on a scenic drive north, through rolling farmland and mountains and forests that made me feel like I was leaving one whole world behind for another. Since I left the East Coast behind for the West, I haved lived in the paradise of San Diego, the farmlands of the San Joaquin valley, and now I'm in the great Pacific Northwest.

I have to say that I thought I was crossing into a storybook when we were on the ferry. After the woods, the tall evergreen trees everywhere, the mountains and the SNOW on the ridges and in the air, and then the water... to an island where there are deciduous trees and more farms with red barns and silos that might have come from the farms of my childhood... the water of the harbor, just over the hill from my front door. The chill in the air and the seagulls everywhere I go.

The drive was nice. The children as well behaved as I could have wished. They both got sick as we left the bad air for the good, and I lost the wheeze in my lungs as we crossed the mountains. I can breathe again. I can only imagine what it's doing for the kids. Then we moved in, and they both got briefly sick, and now I've still got a ton of boxes to get through and I'm sick (though starting to feel better, slowly), and we've finally got internet in the house.

I've also been having some tiny time to read and sew and work on warm things for the house. It's coming along. Will post pictures when I have a bit more time. On the list for next week: battle with the school district.

It's that time of spring again... the superbowl is over and the "winter sport" set is gearing up for more outdoorsy things. Like Paintball. A bunch of people running around with "toys" playing a grownup version of the same games we played as children. Instead of cap guns, paint guns. It's a wonderful thing. Another wonderful product of the Internet age are the paintball forums that bring together people of many backgrounds who share the same interests. If paintball chat is what you're looking for, rest assured that you can find it here. Everything, from what's new in the news, to supplies, gear, paint, dyes, companies... your favorite teams. Your favorite places and methods to play. So many options.

Kids- still sick. Me- still sick. Monday- not the best, but I've certainly had worse. The buses were not delayed this morning despite the fog, and I'm pleased. While she's sick, she's not "sick" enough to require staying home. None of us are. No, this is that annoying sort of sick that's just enough to make you feel off and slightly miserable. Non-infectious, unless you count the grumpiness.

Maybe I'll get some cleaning done today. I've had it on my to-do list for the past week, but somehow that list keeps getting pared back to the minimum I need to do to keep the place functioning. Isn't that the way of it?

Need to get the place clean, though. Toys picked up, laundry done, trash taken out, house aired. Lord willing the weather will be warm enough to open windows this afternoon. The air outside isn't great right now, but it might just be better than the air inside.

Looking forward to living somewhere I don't have to weigh that, even if I don't want to move. I grew up in a place where I didn't have to worry about the air quality outside; it was clean enough to breathe even if the humidity wasn't always great. Here the humidity is next to nothing, but the other crap floating in it is hell on the lungs.

Lapband surgery is an alternative to the traditional gastric bypass. It's less invasive. There are less risk of complications. There are better results to be had from it. As with any elective surgery, you should always get the most qualified doctor you can before going ahead with it.

People looking into get lap band houston procedures can find an excellent program with Dr Collier. He has 31 years of surgical experience as well as a highly praised aftercare team.

Sometimes no matter what you do, you can't lose weight. Sometimes you have to explore alternative methods- if diet and exercise just don't work, then surgery becomes one of the options.

My day so far:

6:15 get up. Get dressed. Pop frozen pancakes into the microwave to heat.
6:20 Get Tiffany up. Get her dressed. Pop her into booster seat, feed her the pancakes and some apple juice.
6:25 Pack her lunch/snack bag for school.
6:35 Comb her hair, wash face, apply sneakers, and let her get up.
6:36 while I'm cleaning her plate off the table, hear her happily slamming a door in the back of the house.
6:37 find out that she's not, in fact, in her brother's bed (score a point for good behavior!)
6:45 the bus appears. Tiff leaves for school.

7:10 Robbie is awake and sucking on his toes.
7:15 get Robbie up. Apply diaper, inhaler, and suction the mucus from his nose.
7:25 feed him a biscuit, try to feed the bottle. Compromise on two swallows of formula and a handful of Baby Crunchies.

Load and start the dishwasher.

7:45 begin his therapy. Alternate activities while scanning his extremities every few minutes for color. When his breathing starts to wheeze, step back on physical exertion and do compressions and speech. Encourage eye contact. Encourage vocalizations. Watch for color, listen for breathing. Whenever he seems likely to accept a crunchy or a swallow of formula, provide it. Even if I have to trick him into it.

Things that got done between 7:45 and 10:15:
Dishwasher ran.
Mixed up a bowl of gluten-free pancake batter. Added a cup of butterscotch morsels, and fried up about 6 pancakes before being swatted firmly on the ankles by a small unhappy child who wanted more crunchies. Poured the rest of the batter into a greased loaf pan and baked in oven (turned out very good, incidentally).
Changed sheets on Tiff's bed and cleaned the room up. Stuffed animals back in place, bed made, the remnants of three books collected and removed. She likes to shred; we try to discourage this and don't let her have books in her room during times when she's most likely to shred them, but sometimes it happens.
Washed kitchen floor.
Rescheduled my cardiology appt to next week, and said a prayer that I don't have to re-re-schedule it. They want an echocardiogram, I think, and I've got two little kids that I'll have to schlep with to that. It happens. Hopefully we'll get it done in record time, with good behavior, since the appt is first thing.
Robbie ate about 5oz and 1/4 cup baby crunchies.

In fifteen minutes Tiff comes home. I need to have her lunch on the table by then, and I have to have dishes put away, and dinner starting to defrost, and I need to call the yard service people to come mow the lawn. I need to run two loads of laundry tonight. Change Robbie's sheets and bedding. Do another round of therapy for him, and a round with her. I should take them both outside for fresh air. I should vacuum. I should...

but we're already running out of time. By the time I convince her to eat some lunch and him to both eat and do his therapy, we're looking at afternoon naps. I can get some housework done then, or I can lay down for a bit. Lately I've been plowing through the work. Today I'm exhausted and need to lay down a bit. If the kids are quiet enough, I might even get to sleep a little.

We're getting everything ready, bit by bit, to move again. I don't want to move. I don't want to go to a new area with new doctors where I'm going to be judged all over again by everyone I come into contact with. These are good kids. They are the light of my life. I'm a good mother to them. So why do I still get judged as unworthy of them because of their developmental delays and weight?

The following is a comment left on this post over at the McCarthy Micro Preemie Blog. I'm fairly certain that anyone familiar with this blog will understand why I'm re-posting it.

....commented by 23wktwinsmommy...
I'm posting again because I can't sleep...this has been bothering me since I read some of these comments last night. I have tossed and turned thinking about how unfair commenters have ben to Liz. How people can't understand that a label will help our children.
A label could help ensure our children received Medicare to cover the costs of therapies, medication, Dr's appointments, equipment, etc. It could help teachers understand that behavioral and learning difficulties so common with our micro preemies have a CAUSE and weren't caused by poor parenting. It could help well-meaning family members and friends that kindly place blame on us that it's a syndrome, not a result of what we are or aren't doing. It could mean so much to have our concerns acknowledged by the medical community and society at large. There is NO shame in having a diagnosis for our children. It doesn't mean we love them less because we seek to expand the understanding of others.
And I also want it to be ok for parents to scream PREMATURITY SUCKS!!! That it has robbed our children, and us, of a whole hell of a lot. We should be able to vent and say these things without having to follow up by saying we are thankful for our children, we know it could be worse, we love them regardless. This is all true and we have said it before. I find myself adding this disclaimer so that my family/friends without micro preemies know that I'm ok, that the burden isn't too great when I open up about my fears and concerns about the kid's health and development. It should be clear we love our children, and it's ok to be worried, upset, and frustrated. In fact, it's normal. We love our children, value them for who they are, and all of that, but do we need to type it every time we explain a challenge? Or is it obvious from reading and clear simply by the fact that we are researching, connecting, and advocating for our micro preemies?
Some people choose to include biblical quotes and thank God in every post, that's fine, I enjoy reading many blogs like that. But everyone writes differently, and expresses themselves differently...and that's ok. That's part of what makes us human.
You can hate the fact that your child struggles to breathe when sick, or struggles with eating, or with social skills, or with talking, walking, understanding, etc..I hate it. I hate it for my kids and all our preemies friends. I wish all were healthy...but wishing will not change the reality. Sitting back and being thankful is part of our journey, but getting up and fighting is part of it too. We live in a world that isn't always accepting; we see prejudice, racism, and hate too often. It should be normal to worry about how our children will be treated, and it's not enough that our family and friends love and accept them. Society should, teachers should, their peers should. And we owe it to our kids to do what we can to help people understand. Because through understanding comes acceptance, and that's what Liz and so many of us want for our children.
I hope Liz continues to honestly express herself and turn to those who understand. I hope readers recognize who Liz is, a caring parent hungry to make the world better for her daughter..I'm fighting right along side you Liz.

Ring around the rosy
A pocket full of posies
Ashes, Ashes
We all fall down.

Do you remember learning the meaning behind that nursery rhyme? As children we danced around in a circle, falling down, laughing with our friends because it was so silly. When we learned about the Plague, about the Black Death that hunted through Europe and Asia and Africa back in the old days, we wondered why on earth our mothers would have taught that to us. A rhyming game about death? It made us laugh and adults looked on and laughed with us while the dark hints of a dark time went unnoticed.

Pandemics like this strike a chord in me. Don't know why, don't really care. The Black Death, while an interesting topic, is nothing to me personally in comparison to the Spanish Flu. Now that's something to keep my attention. I've not heard any rhymes about the pandemic. Most areas don't even remember it; you'll find mention of it in history books sometimes, but the history books like to focus on the tail end of WW1 which was enough for most people to focus their energies on. The flu? That's not history. We get the flu all the time. Sometimes people die from it. Why make an effort to remember a particularly bad season of flu?

Oral traditions pass it down. Something that effects our psyches more than our rational thought processes. One generation to the next. Stories overlap. A grandmother was raised by her aunt and uncle because her own parents died. Families broken up and scattered because someone died... normal enough for the time.

Ring around the rosy, a pocket full of posies

In plague times there was no real cure. Sometimes, something would seem to work and the people latched on to any hope they had. Hope is necessary for survival. Stuff sweet smelling flowers and spices in their pockets, in their children's pockets, and pray that it keeps away the devil-sickness.

In pandemic times, we looked for the same thing. Results. Looking for results, for help, for hope. Wear a mask to keep the germs from spreading. Dose the patient with any miracle drug that may help. Pray, although the churches are closed. Yes, in places the churches were really closed- everything was closed. Towns ran out of coffins. They ran out of hope.

When the mind can't cope with something it starts to shut down and off. The horrid is bearable if you don't think about it. We will survive. We will endure. We'll pick up whatever pieces are left and never speak of it again.

I still don't know what fascinates me more, knowing that a single time frame could produce a varient of the flu that seemed customized for death, or knowing that a good deal of the survivors seemed to have made a pact never to speak of it again. Wipe it away, if you never discuss it you can pretend it never happened.

In a hundred years or so will this make it's way into a nursery rhyme? Will children laugh and play to commerate a terrible illness? When I was in school and learned what that rhyme really meant, several of my classmates were swearing they'd never teach their kids that sort of thing. And I didn't know what I felt about it.

I ended up teaching it to both kids. We do the whole game. They don't know what it means and I certainly am not teaching them that it has any meaning besides the laughter. They don't need to know yet. What I'm going to tell them when they ask me, sometime in the distant future, is that I taught them this rhyme because it's an example of oral tradition. It reminds us that we are mortal. That we break down traumatic events into a form we can deal with, that fears can transmute into a positive thing if only we have enough time.

We are only human. We have to remember the past to cope with the future. Remembering that we survived one thing will help give us hope that we will survive whatever comes next.

This weekend has been pretty much like the past couple of weeks: lost. Utterly and totally lost. I've spent the daylight hours with the kids, trying to keep them content and cared for, and the evening hours staring at the computer in between ten-minute shots of housework. I've binged on potato chips. I've not checked my blood sugars. I've been feeling like rubber, but whether or not that's related to the ongoing insomnia or the diabetes or even the kids' crankiness is up for debate.

One thing I accomplished yesterday was grocery shopping. I got a chicken, and a family pack of steaks that were marked down, and cooked them both up last night. This is supposed to cut down on cooking work next week- cooked and frozen meat in portion controlled packs are so nice to have. I got three steak packs, and four chicken packs out of it- tried out a slow-cooker liner for the chicken. Turned out very nice. I still had to run the crockpot insert through the dishwasher, but it was a world easier to cleanup.

Vegetable Chicken. It turned out very well. Easy, too, which helps. I laid the chicken on the bottom of the pot. Then a handful of frozen minced onion, about a cup of frozen diced potato, a pack of baby carrots, and 2 ribs of chopped celery. The carrots and celery were recognizable, and the potato and onion cooked down into something like mashed potato. It combined with the chicken stock to then turn into a thick broth. Potato-enhanced. I saved out that broth with some of the chicken and tomorrow I'm heating it in a saucepan with a packet of gravy and a cup of water. Cook till done. Serve with a spinach salad? Nice.

It's been longer than usual, I guess, since I've last updated. Marked by such moments as:
Tiff: Apples!
Daddy: There are no apples.
Tiff: Apples! (leading Daddy by the hand to the fridge)
Daddy: We can look, but I promise you there are no apples.
Tiff: (poking head in fridge) Apples?
Daddy: There are no apples. And you can throw yourself on the floor and cry if you like, but that will not make apples appear.
Tiff: But I'm a good girl!


Robbie pulling to stand and falling on his bottom. Reaches up hands and declares: Mama!
Mama appears and grabs his hands, he pulls up. "Mama!" Chortling with joy.


Also marked by such moments as:

Tiffany! Robbie! Stop that at once!

Of course they ignore me. They're kids. I'm just the mother. What do I know? I'm here solely to provide snacks and ruin their fun. I've also been working on my writing, signed up at fanfiction.com and am working on some xmen related fics- an age ago when I was in high school and college I was into it and wrote some back then, it was a great writing exercise that helped polish plot and character ideas for my own stuff and I'm hoping it can be that again.

Unfortunately it brought to my attention how much time has passed since high school and the last time I followed that comic. I graduated in 1995. Do you know that was more than 10 years ago? Geez. I'm certainly not any older. Comics are like soaps- a year is about three cast changes and character deaths that turn out only to be mostly dead. Dead isn't dead when you're talking fiction.

There are also two commissions on my needles at the moment. So I'm flitting between one thing and another and this has suffered. I'll try to do better.