Saturday, June 30, 2012

Eye-Catching Title

Opening sentence that captures your attention and encourages you to open your mind to the possibilities of this blog post. Imagination-stimulating thought. Description that helps your imagination soar. 

"What if" statement. 

Explanation that brings you down to earth followed by witty observation. 

Inspirational quote by famous person. 

Personal thoughts on quotation explaining its relevance to and importance in our lives. 

Closing paragraph full of heartwarming sentiment and a challenge to change your life for the better. 

Thursday, June 28, 2012

The Lowest Point

Over 170 feet beneath the earth's surface - the lowest point in Lincoln Caverns - was one of the highest points of my week. On an hour-long tour of Lincoln Caverns and Whispering Rock in Pennsylvania, I climbed up and down countless stairs, kept up with my family and our guide as we explored the caves, and had a thoroughly good time doing it. It felt wonderful to have a body that barely complained, especially considering just a couple weeks before I was dependent on two canes or a wheelchair to get around.

I did fall behind once. It was at that low point, when I knew I had a lot of climbing ahead of me. As I soaked in the beauty that was around me, I let go of any fear that my body would give out on the way up and any doubt that I wouldn't make it. The peacefulness of the cavern washed over me and I held on to that as we made our way back to the surface - and up a steep hill to another set of caves.

As we sat on benches to catch our breath after the steep climb, my gaze fell on the sign at the entrance to Whispering Rock:

Carrying those words with me as we continued our journey transformed a fun family outing into something deeper. With each step, I found my load a little lighter - forgiving Sproadic Artie for the damage already done; forgiving myself for not always being the best caregiver to myself and my family; celebrating the ease of movement, the joy of the moment, the ability to participate fully without pain or fear of pain holding me back. 

As I descended deeper into the next cave, I felt truly connected to those around me, to nature, to God: a mountain top experience - underground!

Tuesday, June 26, 2012

I Hate This!

I hate it when ...

I hate ... she's so ....

I hate .... they're disgusting.

According to Mirriam-Webster hate is an: 

intense hostility and aversion usually deriving from fear, anger, or sense of injury.

To me, hating someone or something is extreme. I can say that I dislike the taste of certain foods, but to say I have an intense hostility toward lima beans would be quite an exaggeration.

When I was first diagnosed with an autoimmune disease that destroys my joints, causes extreme pain and exhaustion, and has done irreparable damage to my body, I found myself saying, "I hate this!" Saying that I hated psoriatic arthritis was saying that I hated something about myself - an integral part of my being. Embodying the stress and anger of hatred only served to worsen my health. 

Hatred's tendrils wrapped around my patience, my sense of well-being, and choked my ability to enjoy or even participate in life. Working its way through my body, tension and pain increased. Reaching my brain, my thoughts and judgement clouded, as did my view of others. Seeing only what I couldn't do, and what others could, it wasn't long before my world became a very dark place.

Enter Perspective. Perspective comes in all shapes and sizes. It comes from a friend who extols the joys of funky canes and the usefulness of a set of wheels. It comes from kids who conjure games that require minimal movement on the part of the gloomy mama. It comes in the form of magazine clippings of spoons arriving in the mail. It offers proof that life goes on and is indeed worth living. It transforms pessimism into hopeful inspiration, darkness into light.

I hate that I can't ... became How can I...

I hate that everyone else is / can ... became What if I ...

I have that my body can't ... became How can I help my body ... 

In the movie Labyrinth, the main character, Sarah, hates the responsibility of babysitting her baby brother while her parents go out and hates her brother to the point of asking the goblin king to take him away. She seems not to care for the baby boy, the embodiment of love and compassion, until she realizes how hatred has blinded her. What a shift in perspective she experiences when Jarred does come and takes him away! Sarah journeys through a labyrinth of emotions before coming to the full realization of where her hatred has taken her.

It's not until she looks hatred in the eyes and denies it power that she gets her brother, her compassion, and her life back.

Living in a state of fear or anger does damage to the person holding the hatred and has no effect on the object of the hatred. To hate is to give anger and fear power over you. Hatred steals compassion. If you hate yourself, you can't have compassion for yourself. If you hate another, you can't have compassion for others. If you hate lima beans ... don't eat them.
One last thought - if you were to look at the things, situations, or people in your life that you hate, and then let go of your hatred for them, what impact would it have on the objects of your hatred? On you? 

Friday, June 22, 2012

New Part-Time Job

I have a new part-time job. It requires organizational skills, financial skills, and good inter-personal skills. I can work from home, although some travel is necessary. I do everything from research, product acquisition, and packaging, to filling out paperwork and planning events. The most time consuming aspect of the job is organizing everything, including time. The amount of prep-work is staggering.

The pay? Well, it doesn't pay anything now, but the payoff is going to be fabulous in a few weeks!

You see, I'm packing for a week of vacation and another week camping. Two separate trips with a week of work in between. It will be great once we're on vacation ... if I don't totally cripple myself in the process of packing. Packing for seven people isn't easy. Packing for seven people with various food and medical issues is nearly impossible. I need to pack food, pots and pans (to safely cook gluten-free food), air mattresses, a tent, sleeping bags, clothing for seven people for nine days, toiletries, entertainment items, and a wheelchair into a minivan. Oh, and there needs to be space left for us, too. I've suggested to the kids that perhaps we could duct tape one or two of them to the roof for the trip. The six-year-old volunteered.

The paperwork for camp - three in resident camp, one in day camp, and the rest of us camping at the campground - was mountainous. Planning activities for a family with kids ages four through thirteen that will engage and interest all of them, that are handicapped accessible, and won't overstimulate our aspie has been quite a journey in itself. Finding places we can go out to eat safely has been time-consuming and discouraging, as some places offer gluten-free menus but don't promise that cross-contamination won't be an issue, and most places just plain don't cater to celiacs. And then there's the issue of not breaking the bank with paying for food, activities, and gas. 

In the end, it will definitely be worth it. In the meantime, I'll make lists. Pack suitcases and bins. Harass children for clothing items. And maybe even remember to pack clothes for myself.

Wednesday, June 20, 2012


A Dad is someone who takes you to the driving range when you're home "sick" from school with the chicken pox, and then lets you play a game of miniature golf on the deserted course because you entertained yourself so nicely in the car while he was practicing his swing.

A Dad is someone who answers your calls of  "Mom or Daaaaayaaaad" in the middle of the night and escorts you to the bathroom so the snakes under your bed and the alligators in the toilet don't get you. 

A Dad is someone who lets you curl up next to him on the couch on Sunday afternoons when you're little while he's watching "old movies" and then is surprised when you reference movies such as "The Bridge Over The River Kwai" and "Seven Brides For Seven Brothers" as a teen.

A Dad is someone who gets so excited when you and your husband announce you're pregnant that he asks if you've told your grandmother yet while dialing her number and then hands the phone to you when you say no ... and then runs out the door to tell the neighbors. 

A Dad is someone who wears orange corduroy "pumpkin pants" trick-or-treating every Halloween, but is nice enough not to wear them - at least not in your presence - the other 364 days of the year. 

A Dad is someone who, if he doesn't know the answer, will generally make something up. 

A Dad is someone who helps carry on family traditions - like putting the angel on the top of the Christmas tree. 

A Dad is someone whose face radiates joy and love when he looks at your kids. 

At least my Dad is. 

A Dad is someone who, despite insisting he was only having two children, looked into the face of his second child and announced that it would be good to have a third. And then ended up with a fourth and a fifth as well.

A Dad is someone who encourages the kids to do things that make Mama nervous, but usually only when Mama isn't looking.

A Dad is someone who puts the kids to bed by getting them riled up first. 

A Dad is someone who, if he doesn't know the answer, will probably make something up. (Some things never change!)

A Dad is someone who is cool because he knows how to make fire, swords, magic wands, and babies laugh. 

A Dad is someone who takes you on grand adventures, often without going much farther than the back yard. 

A Dad is someone who melted the first time he held you in his arms, and continues to do so even when you're a teenager. 

At least my kids' Dad is!

Happy Father's Day to all the rad Dads out there!!! 

A Weighty Discussion

My weight is out of control and it's killing me - both physically and emotionally. My nine-year-old daughter is overweight as well, and that's difficult for me, too. Healthwise, she seems to be having the same childhood I had - with joint pain, exhaustion, and weight gain no matter what foods or how little or how much she eats. Teaching her to eat healthy and encouraging her to exercise is easy, as that's normal life for us - modeling acceptance of our body types is more difficult due to my own issues. 

Growing up, I was never thin. I didn't care much until I hit my teen years. In my late teens, I worked very hard at covering up my eating disorders. I was finally at a healthy weight, but how I got there put my health and probably my life in danger. In fact, the anorexia/bulemia combined with the amount of pain medication I was on may be to blame for the liver issues I have today. 

In my early twenties, my health issues worsened and I put on some weight. After each child, I'd lose some and then gain a bunch. The past few years have been the worst, as my medical problems have limited my mobility, and thus my ability to exercise.

After keeping a food journal, consulting doctors and a nutritionist, going off gluten, and trying just about everything anyone could think of that might (safely) help, I still haven't lost weight. I say just about everything because exercise seems to be the key for me, and right now it's not happening. 

 I don't look in mirrors often, and when I do, I'm shocked. I don't feel this fat. Even though I know my health is conspiring against weight loss, I can't help but feel horrible about my weight, my body, my appearance. I can't help but be sad that I can't just decide enough is enough and do something about it. 

Or can I help it? Can I just decide to accept myself for who I am and what I look like? I don't think more or less of other people based on their weight, so why am I being so cruel to myself? Why do I find the concept of losing my hair easier to deal with than the concept of accepting my weight - even loving my body whatever I weigh?

Perhaps it comes down to this: Years ago I stopped caring what other people thought of me - of my choices in life, of how I dress or what I do to my hair, or how I raise my kids - but the one thing that still bothers me is people's judgement of me based on my weight. It saddens me to think that I was at my most unattractive inside when I was at my lowest weight, and now that the person I am inside has blossomed, some people can't get past my weight. It saddens me more to think that I can't get past my own weight. 

I am not my body.
I realize that. 
Perhaps I need to get past the fact that
My body is not me.

Friday, June 15, 2012

It's Time

Time off, that is.

I'm taking a week ... or two ... or three... off. You see, there's Father's Day, followed by H turning 10, followed by July 4th festivities, and then I need to get used to the idea that Z will be 12.

Also, I'm feeling better. Not great, but perhaps good. I have a bit more energy. Less pain when moving. I don't know if this is the new normal, or working up to a newer, healthier normal, but I want to enjoy it while it lasts.

Frankly, I need the time with my family. During the time between stopping Enbrel and starting Remicade, and the interval between starting Remicade and just now feeling better, my energy levels plummeted, as did my patience levels and my ability to use my sense of humor instead of my sense of frustration. I need to regroup.

I need to focus on my family for a while...not that I don't usually, but in a way that's free of thinking about keeping up with blog posts and, well, just about anything on the internet. I need to turn off screens for a while and tune in more to my family.

While I'm "gone," I have a few blog posts scheduled to be posted. One in particular on Father's Day. Another that will be a weighty discussion, and another about my new job. I hope you'll check in and read - and maybe even leave a comment or two for me to read should I find my insomniac self curled up with my computer while my family sleeps. 

Wednesday, June 13, 2012

Not the Average Teenager

Or, A Blog Post In Which I Embarrass My Eldest Child

My eldest saw a pediatric neurologist a year ago and was diagnosed with Aspergers. Well, he would have been diagnosed with aspergers had the pediatric neurologist been willing to officially diagnose him based on her own observations and my observations, but she felt she needed one of his school teachers "who sees him every day" to fill out and evaluation as well. We homeschool. I'm the teacher that sees him every day, but she needed an independent evaluation - as in, independent from family members. So he has a diagnosis, but not a diagnosis, as none of his medical paperwork says he has aspergers. 

At the time I was going through a lot with my health and we decided not to pursue it further. The question now is - to label or not to label. We can revisit this with medical professionals and seek a formal diagnosis, or we can let it be. 

There are pros and cons of giving him that label. Would it do more harm than good? More good than harm? It's difficult to know. It could get him services he needs should he decide to attend college, but it could also interfere with being hired for a job. 

What does Alex's aspergers look like? It looks like a kid who didn't - who couldn't - write very well, but could read at grade levels equal to his age starting at age two. A kid who came out of fan fiction homeschool co-op class at age 12.5 and started writing, and has pursued creative writing with passion ever since. It looks like a boy who still wears long pants and a coat, even though we're well into June , because he has trouble transitioning to shorts and to not wearing a coat upon leaving the house (he started wearing the coat in early December, because it took a couple months to get used to wearing the coat!). He's a kid who is incredibly loving toward everyone, although he has trouble showing it to anyone over age three. Hand him a baby and he lights up - so gentle and caring you can see what's in his heart flow through his eyes as he teaches even the youngest infant about the world. It looks like a boy with long hair because the sound of scissors, especially near his ears, it too much for him to take. Alexander is a child who thinks deep things, and conveys his views on his life honestly, even if he knows they don't quite mesh with what he "should" think or do. 

He looks like the kid in all these photos - although most of the photos we have of him are like the one above on the left side of the page...or this masterpiece:

Label or not, he's an incredibly awesome kid. His creativity inspires me. His capacity for love and gentleness moves me. His sense of humor makes my day. And should he ever offer me a hug or (gasp) a kiss, I know I must have touched his heart the same way he touches mine every day.  

Monday, June 11, 2012

Open Windows

I love open windows.

Fresh air wafting through open windows floods my house with energy that seems lacking throughout the coldest months.

Sounds of Summer filter through as well ... birds, chatty squirrels, crickets, and even frogs. The sound of children's laughter as they rejoice in fresh air fun instantly brings a smile to my face.  That one glance out the window is all I need to check on the children brings peace to my heart. 

Sunlight streaming through the window, my youngest dances with the "sun fairies" flying through the air as I shake out towels before folding them. Somehow folding laundry is more pleasant with a gentle breeze that hints of lilacs and freshly mowed grass aiding the process.

My house becomes roomier with the windows open. Open-window weather is play-outside weather. 

Somehow open windows, with the sounds, the scents, and the sights that accompany them, form a connection between the house-dwellers and the outside world, inviting the outside in and the inside out. 

Friday, June 8, 2012


 I arrive and am invited to sit, recline, put my feet up, and make myself comfortable. A pillow is placed beneath my head. Covered with a nice warm blanket, I settle in for a few hours of relaxation. A refreshing drink arrives and I'm informed a gluten-free meal will be on its way in an hour. Aaaah...this is the life! it's not so much like the photo above. Actually, it's nothing like the photo above. Let's try again...

As the remicade is infused into my vein, I visualize it traveling through my body, seeking out Sporadic Artie, and strangling him to death.

Ok, no, I do not in envision that. Actually, the antihistamine I take before the infusion makes me a bit loopy, and I can't concentrate on much of anything, nevermind visualize anything. I try to read, but after reading the same paragraph several times and not remembering a word, I give up. Instead I listen to podcasts of NPR's Wait, Wait, Don't Tell Me or This American Life.  I doodle. I make lists. I sit back, close my eyes, and relax. I enjoy the relative peace and quiet. I drift off to .... and the iv pump beeps. The infusion is over.

When people hear I'm getting two-hour long infusions of a tumor necrosis factor inhibitor, they feel badly for me. They perceive this as a negative thing. As a chore. As something to endure. I see it as an infusion of me-time. I get to sit, relax, do things I enjoy, or do nothing at all. I'm not responsible for and I don't need to keep track of anyone other than myself. On days like today, my friend Renee comes with me and we sit and chat, catching up on each others' lives with out being interrupted. It is bliss. 

Some people go to the spa. I go for remicade infusions. 

Wednesday, June 6, 2012

This is...

Sitting around the dinner table telling stories of my childhood, laughing with my family. 

On my bed cuddled up with a pile of children reading books or watching movies. Most days, not all of the children are mine. 

Folding seven people's clothing, buying food for seven, cleaning up after seven, and sharing a bathroom with six. 

In a single day discussing puberty, sex, genetics, and death - all with a four year old child.

Decorating a wheelchair, painting a belly cast, and gathering bumper stickers for my new twelve-passenger (!!!)  van.

Researching things related to celiac, psoriatic arthritis, the anatomy of a blowfish, how to make marshmallows, mythology, and why you can't get just a tetanus vaccine all in one day.

Teaching and learning in coffee shops, a former warehouse, museums, the forest, at fairs, in the car ... while shopping, cooking, singing, dancing, playing ... from parents, kids, pastors, librarians, friends, family, strangers and animals. 

Supporting breastfeeding mothers, conscious living families, friends, and family members.

Worshiping, praying, and striving to live a godly life. 

Struggling with health, finding the silver linings, hoping to inspire others.

... my life!

Sunday, June 3, 2012

Just Another Sunday

My favorite photos from last Sunday...

which leaves me wondering what today will bring...

This is a normal look for a six year old, right?
Don't mess with my daughter!

Just another magic Sunday.

Friday, June 1, 2012

Dear Parents,

Dear Parents Who Allow Their Children To Spend Any Length Of Time Here,

We are not a normal family. This, you should already know, if you know us at all. As a not-normal family, we need you to understand a few things about your kids' stay with us. 

1. One change of clothes is usually not enough. Kids around here get messy in many different ways - as a result of helping to bake or cook, with any number of craft-type items, and in a variety of outdoor activities such as water battles, playing in the rain, digging in the yard, and epic mudfests. We, however, have been known to loan clothing and wash a child's clothes to ensure the child remains comfortable. We may also hose down bathe the child as needed.

2. If your child is here for a sleepover, we will in all likelihood end up playing with fire. Roasting marshmallows for gluten-free/diary-free cookie s'mores is a wonderful sleepover activity. Since I, the mom, am REALLY bad at building fires, this falls to the soon-to-be 12 year old in our family, as he's a pyromaniac  very skilled outdoorsman. Sparklers are also a favorite here as they a) are an excuse to stay up until it's reeeeeeeeeeally dark out, b) I'm a huge fan of "sparkler art" and c) they're sparkly. 

3. Your child may at some point be duct-taped. This would not be my fault. This would totally have to do with my husband - and with the fact that with many kids, when you threaten, jokingly, to duct tape them if they don't quiet down and go to sleep, they think this is a fabulous idea. 

4. Your child may or may not sleep. Although I'm very good at naptime as I crave downtime in the afternoon, bedtime is not huge with me. My children, left to their own devices, put themselves to bed quite well. My children, having friends sleeping over, seem incapable of settling down to sleep. Seeing as they reside in the bedrooms upstairs - which is frankly a scary, scary place for someone with OCD who has visions of torching the place and starting over shoveling everything into garbage bags and starting over from scratch - I tend not to check on them too often to see if they're actually sleeping. See #3. Where they end up sleeping is also questionable, although usually it's in a bed. 

5. My children may introduce your children to things like AFV (America's Funniest Videos), Balderdash, and practical jokes involving creamed spinach. (Ok, that last one might be my fault.)

6. My house is chaos. Should you come to pick up your child and find a million kids being very loud, making big creative messes, and the younger ones perhaps only partially clothed, it is because we're having too much fun - and the little kids are "having trouble keeping our clothes on." 

So there you have it. You have been warned!