Wednesday, July 1, 2015

Brown Paper

 It was quite an adventure. We basically packed up our house, room by room, moved furniture, and used just about every ounce of creativity, patience (most of which ran out), and more money, time and effort than expected. We're finally done. For now. 

We slept in our dining room for days. We ate wherever we could find space. We ran up and down stairs just to get things out of the fridge. We cooked just about every meal in crockpots for close to a week. We even shipped our kids to Gramma and Papa's house for a night because there was very limited access to our one and only bathroom. 

We ripped up nasty, disintegrating carpet. We pulverized the breakfast bar separating our kitchen and dining room. We tore up underlayment with grooves and bonded-to-it  chipped and scratched up linoleum. We hammered and glued and polyurethaned. 

We laughed. We cried. OK, I cried. We yelled, we apologized, we thanked, we accepted help, we thanked some more, we ran away. OK again, I ran away, briefly, with kids, to my parents' house due to fumes and migraines and stress. We learned a lot about the process, about ourselves, and about each other. 

The result? One continuous type of flooring throughout the main part of our house. Brown paper flooring, to be exact. Flooring that is much more handicapped accessible than ancient carpet and broken and missing stick-on vinyl tiles on top of linoleum. In addition,we now have a much more open kitchen and dining room area - a space that works much better for my family. It took much more work and a lot more money than I'd anticipated, but it still cost a fraction of the alternatives and will meet our needs for now.  

Now that that's done, I can barely wait to patch walls, paint, and then tackle the bathroom floor. But that will have to wait - we have a basement bedroom to work on next. It should be interesting, the budget having been mostly eaten up by the floor renovations, but we'll figure out some creative solutions to make it work. 

Tuesday, June 30, 2015

Rainbow Thoughts

I have so many thoughts running around in my head.

When it was announced that gay marriage was legalized by the Supreme Court of the United States, I nearly cried. And I got angry.

Angry because I knew I would be thrust into defending myself as a Christian who is pro-gay marriage ... who is pro-Love. Angry because this decision had to be made at all - that it had to be a fight for humans to have the right to marry other humans and receive the benefits of legal marriage. Sad that there are people in this world who somehow think that love has limits - that Jesus' love, God's love has exclusions. That there are people who don't understand that Love Your Neighbor means everyone, no matter what. And that people think that gay marriage has something to do with religion or politics or public opinion when, in fact, it has to do with basic human rights. It has to do with Constitutional rights. That's it. 

As a Mom, Aunt, Friend, Christian, and Human Being, this decision hit me hard. My friends and family members can marry whomever they want, legally. How wonderful! Time to celebrate! In this celebration, I thought of the weight some of the people I love have been carrying. At first, I thought how free they might feel, until I realized that this marriage thing is just the tip of the iceberg and there are so many more hurdles when it comes to giving basic human rights to LGBTQIA issues including employment, housing, and other areas of discrimination. 

When we stop seeing differences and discriminating against groups of people because of these differences and start treating every human being the same? 

Thursday, June 18, 2015

Three Teen

So much change in just one year. Amazing change. Surreal change. At least from a mother's point of view. 

Another year older, but still the same heart, the same kindness, the same beautiful being emanating from her soul. Over the past year, Haley's creative spirit has soared. She expresses herself so well through her art, photography, and singing, as well as gluten-free baking, caring for children, and her various volunteer activities . She has followed her passions, sometimes making money in the process. In doing so, she is able to treat herself to equestrian camp this summer, where her love of horses will mingle with crafts and fun and feed her spirit. I love it that, during what can be crazy, questioning years, Haley is a confident, passionate young woman. 

My daughter is now officially a teenager. Thirteen. That means I have three teens in my house now. Three. Teens. In my house. I feel like I should feel overwhelmed at this, but I feel more excitement than anything. Teenagers are cool people, especially if you listen to them and encourage them along life's journey however you can.

For my brilliant daughter on her thirteenth birthday, I leave these thirteen thoughts...
1. Be yourself.
2. Nurture your sense of humor, it will come in handy.
3. Nourish your soul with things you love.
4. Pray often for others, for guidance, and for thanksgiving.
5. Talk to your mother ... about anything, even if it's embarrassing or scary. That's what I'm here for.
6. Follow your passions and dreams.
7. Ask for help when you need it, and give help when you can.
8. Celebrate your body, even if it doesn't always cooperate with your. Living with autoimmune disease can be challenging, but if you get to know your body's limits and challenge them every now and then, you may just be surprised at what you can accomplish.
9. Make sure whomever you have a relationship with respects your body and your boundaries. Don't do anything you don't want to do - stand up for yourself and your values.
10. Remember that it's ok to make mistakes - that's how we learn. And to tell your parents if you need help making a mistake right - that's what we're here for. 
11. Listen more than you speak with friends - you can speak more than you listen with your mother. 
12. Remember to nurture yourself as much as you nurture others. 
13. Stop saying mean things to your mother.
Always remember I love you!

OK, so I snuck a fourteenth thing in there, but it doesn't count because I didn't put a number before it.

Thirteen. Wow. 

Monday, June 15, 2015

Digging Out

I feel like I'm digging myself out from under life. My brain, time, money, and energy have been consumed brown-papering floors in our living room, dining room, and kitchen. And taking children and myself to eye doctor, dentist, camp physical, nutritionist, rheumatologist, endocrinologist, etc. etc. etc. appointments. And organizing two birthday parties, going to fun events like the Robin Hood Festival school day and Lake Compounce Homeschool Day. And getting tattoos. And going to the ER. And. And. And.

I've also been doing battle with my meds, my weight, my body, depression, and anxiety. Thank God that I have friends and family who are there for me whenever I should need them. It would probably be to my benefit if I were more able to call on them when I need them.

One thing I've missed over the past month - or however long it's been - is writing. I have little bits written or typed here and there. Over the next couple weeks, I'm hoping to pull out some of them and flesh them out and share some of the amazing things, as well as the insanity, that has been my life lately.

Until then, I leave you with this...

What do you do when your seven year old is up at 9:30PM and asks to shave your head? 


Yes. That's my seven year old shaving my head at 9:30PM on a school night. School nights don't mean much to our unschooling family, so that she's up at 9:30 is fairly normal. I did need my head shaved, as my falling-out hair due to a medication side effect was driving me crazy. So why not? She had so much fun!!!

Saturday, May 16, 2015

For Your Consideration

The consideration of others is a lost art.

How easily we get angered at all the inconsiderate people in the world - the guy blocking traffic; the noisy neighbors; the lady holding up the line counting out change; the whiny child interrupting our phone call. Why don't they consider the needs of those around them? Don't they know we have our own lives to live, places to go, things we'd like to be doing, uninterrupted? How could they be so inconsiderate?

Or are we, perhaps, the ones who are being inconsiderate?

The guy blocking traffic may be helping someone across the street or protecting an injured animal. His car might have stalled. He could have gotten devastating news and it could have just hit him, sitting at a traffic light. He could be ill and in need of help. Would it be more beneficial to get angry not knowing the reason, or to hope the man is ok as you make your way through traffic?

The lady holding up the line could be counting out change from her purchase because that's all she has. Or perhaps her debit card didn't work and she's doing the best she can to pay for her purchase. Or maybe she has some sort of physical issue and is struggling just to pick up the coins. Why not assume she's doing her best and pray others would have patience with you should you be in a similar situation? Being upset with her won't help anyone. 

The whiny child could be ill or injured or just need to be heard. The child could be seeking attention, and that's ok, because that's what children do. What would happen if you paused your conversation and took twenty seconds to listen? More than likely you'd meet the child's needs and they would move on, allowing you to continue your conversation. 

Get along among yourselves, each of you doing your part. Our counsel is that you warn the feeloaders to get a move on. Gently encourage the stragglers, and reach out for the exhausted, pulling them to their feet. Be patient with each person, attentive to individual needs. And be careful that when you get on each other's nerves you don't snap at each other. Look for the best in each other, and always do your best to bring it out.  1 Thessalonians 5:13-15

Friday, May 8, 2015

Spring Cleaning

A second mattress swiped from the other single bed and a memory foam mattress topper on top of that make the bed only slightly more bearable. My back spasms as I try to relax. Laughter wafts through the cabin walls as Enya serenades, well, only me, as everyone else has finally fallen asleep. 

Too tired from a day of homeschool co-op followed by five hours of driving, a delicious dinner at the Yankee Smokehouse, and then catching up with friends at Camp Calumet, I decided that my t-shirt and shorts would do for pajamas. After a run to the bathroom with a child in the 40 degree New Hampshire night, I soon regretted my choice. 

Battery operated tea lights flicker as I coax my body into a semi-comfortable position. Among other things, I pray for at least a couple hours of sleep to find me in preparation for the long day of work ahead of me. 

My toes burrow into the cool sand as the fog begins to lift from the lake. Just two weeks ago, we were told, ice still inhabited Lake Ossipee. Watching a pair of ducks diving after their breakfast, I breathe in the cold morning air and give thanks once again for this place. Picking up my crutches, I call to my children, encouraging them off the beach and toward breakfast. 

Staring on freezer number three, a walk-in freezer, after cleaning out and cleaning countless cabinets, shelves, and carts, I realize that my body is still functional and I'm not in agony, as I thought I'd be six hours into Work Day. Getting Camp ready for the Summer isn't an easy task by any means. It feels good to be working. 

Done early cleaning the Lakeside Dining Hall, we escape back to the cabin where children decide it's time to take the plunge. I grab a towel and a camera and we're off to the beach. The temperature just twelve hours ago was 36 degrees and the ice left the lake two weeks prior, but that doesn't stop my children from wading in. I giggle at the sight of my two Aspie children in the water wearing hoodies and gasp as Danger Girl dives in, completely submerging herself in the frigid water. 

Campfires are near the top of my favorite things at Camp, and this one surpasses every expectation. Joy and contentment permeate my being, driving out thoughts of the pain that wracks my body. It feels good to be here, to push beyond my limits for once, to contribute, to have fun... to be normal for a day. As the sky grows dark and the fire dies down, I close my eyes for a moment as we sing a round of Beautiful Savior. I love this place, these people. Two more months, I think. Two more months and we'll be back.

She sits on the bench, so sad. She's just realized we're leaving today and it tortures her entire being. She reluctantly makes her way to breakfast, where her sadness is short-lived as she greets friends, old and new.

The shed by the lake cleaned out, squirrel nest evicted, swimming area lines and buoys untangled, beach chairs set up, we head to worship. Every song I need to sing is included and the Message preached is just what I need to hear. My heart and soul are full as we sing a last chorus of "The Trees in the Field."

It's time to pack up and clean up our cabin. I feel sad, but at peace. We will return after getting our house in order, my mind more at rest for having done so.  I will have time to coax my body into better shape for hikes and kayaking and other camp fun. I give thanks, once again, for this place. 

Thursday, April 30, 2015

More Than Words

The other day my husband admitted something to me that I've known for a while. The words that came out of his mouth hurt more than I expected. I understand that things like this happen. We have five kids, busy lives, I have multiple disabling chronic illnesses, and I am not the same person as the one he married nearly twenty years ago. For that matter, he's not the same as the man I married, either. 

I could have yelled, screamed, and felt defeated. Instead, I saw the conversation as an opportunity for growth for both of a chance for us to come closer together, rather than something that would break us apart. In what he said, I heard more than the words - I heard the hurt, the sadness, the longing for more from our marriage. 

Besides, I can see his point. 

He doesn't know me as well anymore -not as well as he did before we had children. We're not the kind of best friends we were when we got married. We don't share as many common interests, mostly because I'm physically incapable of doing many of the things we enjoyed years ago. In some ways, we have grown apart. He gets things done around the house, works, comes home, and gets more things done around the house. I homeschool children, manage a household, manage my own medical stuff as well as my kids' medical, spiritual, and emotional needs. Like many other parents, we find our lives revolving mainly around our children. 

Before he goes to work, we talk about what needs to be done around the house, appointments, errands, etc. When he gets home from work, we talk about what happened with the kids during the day, how work went, and the next day's plans. On days off, we talk about how to spend our time together as a family. Somehow, we rarely get the time or have the energy to spend time together, just the two of us, or at the very least discuss something other than children, schedules, and to-do lists. 

We love each other, we just don't know each other as well as we could or spend enough time concentrating on our relationship. Parenthood and chronic illness and life have changed us from who we used to be, and now we have the opportunity to get to know each other again. I'm sure this opportunity will present itself time and time again during our lifetime - when the kids start moving out on their own, when the last child moves out, when the grandchildren start arriving. What an exciting time for us! Now to find the time for more togetherness!

Sometimes, when life hits us with things we don't want to be true, we need to take a step back and pay attention. More than words, we need to see the truth in the love that shines through and act upon that love. 

Little children, let us love, not in word or speech, but in truth and action. 1 John 3:18

Friday, April 24, 2015

Some and Others

I didn't change. My priorities did.

After my diagnosis, I could no longer afford to focus all my time and energy giving to others and little to none on myself. Needing to take care of my health, I had to step back from other things. Doctor appointments, new medications, side effects, radical changes in diet, declining health, increasing pain, limited mobility,  and just plain wrapping my head around multiple potentially devastating diagnoses took most of my time and energy.

And for this some called me selfish.

Others, though, stood by my side, supporting me, cheering me on. Finally I was doing what they had been urging me to do for so long - what I always urged others to do for themselves - I was taking care of myself. In getting myself on the track back to health, or my new definition of health, anyway, I could then better care for my children, my family, my friends. I could be a better friend, when energy levels and illness allowed.

My first priority has to be to my health, because without that, I can't take care of anyone else. Without that, I don't have my life.

But there's no way your health can be that bad, Some say.

Because when Some see me it's on good days. It's on those days that I'm out and about. Or Some see me on days when I decided to take enough medication to get through the day with more ease. They are not the Others who call or drop by to see if I need anything on the days or weeks or months that I'm doing poorly. Some are not the angels who arrive on my doorstep,  not minding if I'm still in my pj's, just to offer a hug, or to chat, or to see if they can pick me up anything while they're at the store. Others come by with coffee or dessert or music or conversation to share, and sit with me and talk to me about important things and funny things and stressful things and silliness. Even if only for a few minutes, it makes such a big difference. 

Some are never going to get it, and will fade from my life. Others will stay with me through thick and thin, even if they don't know what to say or how to act or what might be helpful or necessary. That's life - the comings and goings of some friends, and the enduring company of others, whose caring feels more like family. 

There is value to me in both those friends who pass through my life for a short while and those who are rooted firmly in my life. They all have lessons to teach and love to share, each in their own way. Some aren't able to understand what it is to be a friend to someone who is chronically ill, and others don't need to understand, they understand that all that is needed is to be a friend. 

Thursday, April 23, 2015

Stop the World I Want to Get Off

I'm tired of being tired. I'm sick of being sick. I'm literally and figuratively weighed down by weight I've put on as a result of prednisone combined with mobility and exhaustion issues and an over cold and snowy winter. I'm in so much pain these days, I can barely handle it. Those that know me know that that's saying a lot. Some days I just feel like crying. Days like today, I feel like giving up.

I look at all that has to be done to our house to make it manageable for me, and then at our bank balance, and wonder how it's going to happen. I want to give up and once again put the changes off until next year. I look at all the things I was hoping to be doing with my life at this point and what's realistic for me, and it gets depressing. 

I want to cancel everything, curl up in bed, and turn off life for a while.

A long while.

But then there's the upcoming visit from my mother- and grandmother-in-law this weekend, which should be wonderful. They are such great people to be around and we always have fun, often staying up way past midnight playing cards and laughing loudly enough to wake the children.

And a few days after they return home, we go to our second home - Camp Calumet - for Spring Cleaning Weekend. A lot of work,  but a lot of fun and fellowship in the process. And the atmosphere there is nothing but relaxing and rejuvenating.

Following that, there's Mother's Day and the Renaissance Faire and Lake Compounce Homeschool Day and Haley's Birthday and soon after that, our glorious nine days at Camp Calumet for Summer Camp.

I guess I just have too many marvelous people and awesome opportunities in my life to turn it off for a while. A day off every now and then, however, would be amazing.

That's life living with chronic illness. Sometimes it all just seems too overwhelming and it's difficult not to concentrate on the negatives. It can be too easy to let the pain and limitations overwhelm the hope and joy. As if by the flip of a switch, belief that life is good and confidence in what the future has to offer can be overcome by depression and fear. Thank God I have people in my life who stop the world for me momentarily to help me refocus and have faith. 

Monday, April 20, 2015

Just Say No

Scrolling through my Facebook feed, an article caught my eye. When I read my friend's "introduction" to the article, I stopped my hovering finger from clicking the mouse button that would bring me to the article. I knew I shouldn't read it, as it would only serve to make me angry.

The article was about things that a parent did not allow their child to say to adults. One of those things was the word "no," 

Not only do I not forbid my children to say "no" to anyone, but I encourage my children to say no if it's the appropriate word to say. Teaching a child not to ever say no to an adult or an authority figure is incredibly dangerous. Unimaginably dangerous. The possible consequences of teaching a child to blindly obey an adult can be horrific - abuse and abduction are the first to come to mind. But, you say, they'd know to say no in those situations. Maybe, but not always...not nearly often enough. 

Then something else popped up in my feed - a bit about school detention slips that were supposed to be humorous. I readily admit that we had a laugh at a kid calling a teacher a Muggle, but there was one letter to a parent from a teacher that stated that a student tried to correct misinformation given by the teacher, repeatedly, and that it would be in this student's best interest, even though the student was correct, to learn to obey authority no matter what. A teacher insisting that a child just learn the misinformation given in class rather than question what he knows is wrong. That's some scary stuff!

I nearly turned of my computer and gave up the internet. 

Instead, I did what I should't have done and clicked on that first article to see what other words I'm "not supposed to" allow my children to say. They included "I don't want to" and "I don't like this." Again the warning bells with big flashy spinning lights went off in my head. Not only do I want my children to be able to say these things, but I want to empower my children to say these things whenever they are appropriate.  If someone tells my child to have a drink or a smoke or a snort or do something sexually when they don't want to, I'd rather they be able to say "I don't want to" or "No" than to go along with it because it's someone perhaps older than them or with more perceived authority. I want my kids, in any situation in which they find themselves uncomfortable, to be able to say, "I don't like this." 

I also teach my children that adults aren't always correct, that grown-ups make mistakes, that authority figures sometimes abuse their authority, and that they need to follow their instincts and morals in any situation they encounter.

And yes, I allow my children to say no to me. I've heard "I don't want to" when I have told or asked a child to do something. Sometimes my response is "OK, which one of these things do you want to do?" or sometimes my response is, "Me neither,but we both need to do what we don't want to so we can have some fun later." I've found that my children are much happier and much more productive human beings when we recognize the I don't want to's and the I don't like this's and take them into consideration. 

If my children are assigned tasks and one doesn't like doing their task and wants to trade with another, who does like doing it, then why not, as long as the task gets done? If my child has an assignment to do and doesn't want to, that's a different story - however, the child is still allowed to state that they don't want to and ask for help figuring out a way to make the assignment more pleasant. One of my children was having trouble with sermon notes for Confirmation class, so as we discussed the sermon, I typed out what she said, verbatim. She was surprised when she read it - and discovered it's easier for her to talk about it than to translate her thoughts directly to the written word. Now she has the option of recording herself and then writing down what she says, or asking me to chat with her about the sermon, which I'm usually very keen to do.

So, please, empower your children to use words like no, stop, I don't want to, I don't like this, and hear them out when they use these words. It doesn't mean that you have to let your children get away with doing whatever they want or disrespecting people. It means that you are treating your children like the human beings they are.