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. 






Thursday, April 16, 2015

The Ultimate Answer to Life, the Universe, and Everything


Have you ever been asked a question that you really don't want to answer - that really isn't any of the person's business? Questions that smack of genuine concern, yet also seem to pry a little too much into your life? Questions like, "What do you see in him?" or "When are you going to go back to college?" or "Wouldn't you prefer to be doing something more fulfilling?" Now, don't get me wrong, sometimes these questions are perfectly fine - but when asked by someone whose intent is questionable, we may not really want to answer. What is to be done?

Teens are asked about college prospects and their choice of major. Dating couples are plied with questions about the prospect of an engagement. Newlyweds are barraged with inquiries as to when they're starting a family. Parents get deluged with such questions from everyone they run into - even complete strangers - questions ranging from diapering to feeding to toy choices to every aspect of parenting. Breastfeeding parents happen upon similar questions from the time their baby is born: "When are you going to wean?" or the same question disguised in other questions such as: "How long are you planning to nurse?" or "Is she still nursing?" Co-sleeping parents are often asked, "When are you going to kick that kid out of your bed?" Couples are asked about how their relationship is going, their sex life, their future plans. Often these questions come from people on the periphery of our lives - people with whom we really don't want to share our personal stuff.

Luckily, there's an easy-to-remember, one-size-fits-all answer to all these questions and more! It's a perfect fit for the impertinent people in your life. It is best said in a calm, kind, genuinely interested, lilting tone, eyebrows raised, eyes wide, head slightly tilted:

"Why do you want to know?"

At first glance, that question may seem a little defensive, possibly a bit rude. But think about it - the person asking about any of your life decisions is asking a very personal question. A personal question that, if put in another way, would be considered rude. What you do with your life is up to you an no one else. The relationships you have are between you and person in the relationship - no one else. It's like asking someone, "When are you going to lose those extra 20 lbs?" or "When are you going to stop wasting your money on all that crap and get your life in order?" or "You really do that for a living? Why don't you find something more worthwhile?" Frankly, it's none of your business what personal choices someone makes.

Asking, "Why do you want to know?" turns the tables on the person, and points out that the person is indeed sticking their nose where it does not belong. Often the person will respond with, "Oh, I'm just curious." I try to take that as an opportunity to change the subject: "Oh, that reminds me, I'm curious about where you got those gorgeous earrings!" or "Speaking of curious, I found Billy digging in one of our potted plants the other day and when I asked him why...."

But mostly the response is some sort of stuttering half-answer half-apology, and the asker quickly changes the subject him or herself. 

OK, so maybe the magic question isn't the answer to life, the universe and everything, but it does come in handy in diverse situations. When you really don't want to answer, just ask! 

Or, I suppose, you could just respond to such questions with "42" and completely confuse people.







Wednesday, April 15, 2015

Leap of Faith


Soon, we will pack up our house, room by room. We will move furniture, carpeting, and sub-flooring. Everything must go! Well, everything must leave each room for us to re-do our floors, anyway. We'll put most of it back eventually. 

This has to happen, as I can no longer put my health on the line tripping over our floor. You read right - I trip over our floor. Whether it's the transitions between rooms - carpet to floor, floor to tile - or the dips in the falling apart particle-board floor in the dining room with the coming-up vinyl tiles, it's dangerous for legs that don't work properly. If we're doing the floor, we might as well rip out the non-handicapped friendly breakfast bar monstrosity in our kitchen/dining room. Since our kitchen and dining room are essentially one large room connected to the living room - separated by stairs - the entire floor has to be redone...the hallway, too. And the bathroom. And most likely the downstairs bedroom as well. 

I feel compelled to get this done, although I'm not quite sure at this point how it's going to happen. The logistics of finding space for a living room full of stuff; finding time, hands, and money to rip apart a room and put it back together; and then finding these things again while doing an even bigger room is going to take a leap of faith. Finding all those things to do redo an entire first floor worth of flooring will require a giant leap of faith. 

Usually I'd be worried about how it will all be accomplished, but I'm finding myself compelled to move forward, confident that things- and hopefully people - will come together to get the job done. At moments I feel like I've lost my mind, but mostly I just feel like this is what we're supposed to be doing. 

Anyone want to take a sledgehammer to a breakfast bar? Oh, wait ... I have more than enough teenagers lined up for that job! But an electrician would be nice. And someone or two good at putting in subflooring. Any decoupagers in the house? Is decoupager even a word?  Ikea furniture assemblers would be great as well. We'll take anyone who wants to help and will work for pizza and potato chips. Come take a leap of faith with us! 

Friday, April 10, 2015

The Depths


As my husband was putting packages of turkey breast he'd just sliced into our chest freezer, Zachary asked him, what's at the bottom of the freezer? Familiar with the myriad veggies, meats, and blocks of mozzarella that float around the top of the freezer, he wondered what lurked in the freezer's depths. 

"Placenta," was my husband's response. 

"Oh, OK," replied the teen.

Apparently in this house, the announcement that there's a human placenta in the chest freezer is nothing unexpected or exciting - one more piece of irrefutable evidence that our family is weird.

Alia was born at home, a spritely 9 lbs 14 oz compared to her 10 lb 14oz brother Coren, also born at home. Coren's placenta was buried under a lemon tree on his first birthday. Alia was born in February - not exactly the best month for gardening. So the question comes to mind: what are we going to do with Alia's placenta? I suppose I should ask her, but I'm afraid of what she might come up with. 

So there it stays, at the bottom of our chest freezer, until we're brave enough for Alia's answer. 

Thursday, April 9, 2015

The Other Side of Easter


On the other side of Easter, I'm taking a much-needed rest. My body fighting illness, in more pain and feeling more run-down than usual, it is a welcome calm before we launch into a busy Spring. 

On the other side of Easter, I feel... I don't know. Changed, somehow, by my forty day Lenten discipline. Changed by Holy Week and Resurrection Day worship. Changed by family and household circumstances that need my immediate attention - some good, and some problematic. I feel like I need to be more and do more with a body that wants to do less and a brain that wants to think less. And that I can't right now has to be ok.

On the other side of Easter, I've come to a greater acceptance and understanding of where I am in life. I've learned to listen more closely to my body, to my children, to those around me, and to my circumstances.

On the other side of Easter, I give thanks more and worry less. I look forward with hope rather than looking back in despair. I find as much joy in a day or five of rest as I do in a day or five of giving and doing and accomplishing.

On the other side of Easter, I am content with what I have and am looking to live with less. I am content with who I am, yet strive to live better.

On the other side of Easter, I am looking forward to change. Change for the better in my body, in my soul, in my life. Changes for the better in my family. Changes for the better in my house, which hopefully will soon be under construction, and then more destruction, and then put back together in a more functional way.

I am looking forward. 




Saturday, April 4, 2015

Forty: Resurrection


The Resurrection is not a single event, but a loosening of God's power and light into the earth and history that continues to alter all things, infusing them with the grace and power of God's own holiness. It is as though a door was opened, and what poured out will never be stopped, and that door cannot be closed. ~Megan McKenna
It's been a forty day journey. Forty posts in forty days. Forty quotes, forty words, and many more deeds than just forty. Evidently we've reached the end of the path. Resurrection Sunday will dawn, and life will return to normal. 

Jesus' Resurrection does seem like the end of the story. True, it marks the end of Holy Week, nicely wrapping up our journey with Jesus to the cross, to the tomb, and now from the tomb, raised from the dead. It's a nice, neat package. 

But wait!

There are forty more days of journey to the Ascension - Jesus isn't done with us yet. Ten additional days of travel will then bring the Holy Spirit to us on Pentecost. 

But wait!

The Resurrection doesn't end with the Ascension. We are a Resurrection people. Jesus opened the door through which God's grace flows. There is no going back to life as it was for any of us if we can even begin to wrap our minds around this. Jesus died for us so God's grace could pour down upon us - so that we, too, can be raised from the dead into everlasting life; so that we can live this life free from worry, safe in God's embrace.  
________________________________________


Friday, April 3, 2015

Thirty-nine: Good


The true measure of a man is how he treats someone who can do him absolutely no good. ~Samuel Johnson

Good ... a good word for today. Yet it feels a bit "off," as Good Friday commemorates Jesus' crucifixion and death at Calvary. Not exactly the most pleasant thoughts to carry with you throughout the day, I decided to focus on the Good. 

During Jesus' life, He constantly treated all He encountered with love and compassion - even, and especially, when they could not give Him or do anything for Him in return. To the end, he lived forgiveness, assuring the man on the cross next to him that he would be with Him in Paradise. 

How often in our lives do we do things for those who can't in any way begin to "pay us back?" Why is it that we say to people, "I owe you one," or "you owe me one instead of giving or receiving freely?" Why do we expect, at the very least, gratitude in exchange for the good things we do for others? How often to we ask or think, "what's in it for me" before volunteering to do something? Is this the way we should live?

I've been trying for some time to do good with gratitude, and not expect anything at all in return; to do things simply because they are the good and kind thing to do; and to be at peace with not getting recognition for the things I do, instead knowing that I did them with joy and that they are appreciated.

Instead of wanting a pat on my back from my husband for cleaning and organizing and shopping and scheduling and the myriad other things I do for our family, I reflect on my days, knowing that the good in what I did is all that matters. Rather than expecting thank yous from my kids for making dinner, I look at their happy faces as we enjoy the meal together. Instead of ranting and raving over dishes and clothing and...and...and left around the house, I pick up the things on my way to where they belong and thank God I have people in my life to pick up after. Well, at least I try to, that is. Some days are better than others. 

Don't get me wrong, hearing a thank you is nice, but I no longer see it as necessary. The gratitude for the good lives within me. 


"...the Christian thinks any good he does comes from the Christ-life inside him. He does not think God will love us because we are good, but that God will make us good because he loves us." C.S. Lewis
________________________________________

Thursday, April 2, 2015

Thirty-eight: Mandatum



"In each of our lives Jesus comes as the Bread of Life - to be eaten, to be consumed by us. This is how He loves us. Then Jesus comes in our human life as the hungry one, the other, hoping to be fed with the Bread of our life, our hearts by loving, and our hands by serving. In loving and serving, we prove that we have been created in the likeness of God, for God is Love and when we love we are like God." - Mother Teresa of Calcutta
It's Maundy Thursday, a day when we reflect on Jesus' celebration of the Passover meal with his disciples; when He made a New Covenant - a covenant of Love. Maundy, from the Latin mandatum: a command, a mandate of Love. He doesn't tell us to just love God, he tells us to love on another- requires us to love one another. 

This is not a Hebrew Scriptures commandment of "do not." It is a new commandment - one of action.  Just as Jesus loved and served others during his lifetime, he compels us to do the same. Just as Jesus comes to us in the Bread and the Wine, he expects us to feed others with the Bread of our lives. 

What is the Bread of your life? 

As I kneel at the Communion rail after receiving the Body of Christ, I pray.
"Thank you..."
then
"Please help me to..."

It was just upon reading the above quote from Mother Teresa that I realized that what I've been praying has been:
"Thank you...for the Bread of Life."
then
"Please help me to...better feed others with the Bread of my life."

Or...
"Thank you for Love."
and
"Please help me to better Love others."

That's what it all boils down to, really. That's what life boils down to.
Love. 


________________________________________