Wednesday, December 31, 2014

Daily Bread


I nearly laughed out loud right there in the middle of quiet Evening Prayer worship. As I was praying  ... give us this day our daily bread ... the thought popped into my mind: "God must want me to go on a diet!"  Where this thought came from, I have no idea, but it got me thinking.

Give us this day our daily bread - a request for Enough. A request for just enough of what we need to make it through the day every day, like manna in the wilderness. No more, no less - a blessing of the essential. 

It dawned on me that lately I've been feeling like I don't have enough - not enough money to pay bills, not enough medication to take care of the pain, not enough energy to make it through the day, not enough answers to my health questions, not enough left after taking care of my family to nurture friendships. I feel like I'm lacking so much, and losing more by the minute. Perhaps God wants me to go on a diet - to live with less than what I expect, less than what I think I need. 

Or it could be that God does provide enough in my life: joy despite the pain; a medical team that's doing its best to get me the testing and care I need; a loving and supportive family; food in our pantry ... if only I focus on that instead of the overabundance of potential stress.

Then again, maybe God does want me to go on a diet - to give up worry and stress; to simplify life further; to weed out negativity and doubt; to realize that no matter what happens, I have Enough, I am Enough. 

In 2015 I will focus on living blessed with Enough. I will spend Enough time with each of my children to help them feel loved and valued and appreciated. I will manage my time, money, and other resources more wisely to make sure we rarely feel lacking in any way. I will live abundantly in God's love and care. 

Tuesday, December 30, 2014

Unforced Rhythms of Grace


Am I supposed to be having a nervous breakdown midlife crisis right about now? It is my fortieth birthday, after all. What's supposed to happen in a midlife crisis anyway - are you supposed to try to recapture your youth or something? I don't need to do that. I have a sixteen year old whose mere age takes me back there often enough, and a fourteen year old who is too much like me and reminds me that I do not need to go back to those angst-ridden years. My early twenties were spent planning a wedding, getting married, and figuring out what true commitment and responsibility meant.  I relive my mid-to-late twenties, which were mainly spent mothering very small children, often enough when wrangling friends' little ones. I don't see a need to relive any of that - I'm good, thanks.

I don't know how it's supposed to feel to be forty. I'm guessing it's not my current state of wondering if this Sunday will be the day I surpass the mobility issues of my eighty-year-old comrades in mobility devices, although the thought somehow amuses me. 

For me, it's living in gratitude for the gift of forty years of life. Several years ago, receiving diagnosis upon diagnosis, the prognosis of liver failure looming, I wasn't sure if forty was a year I'd see. This year, discussion of the possibility of brain tumor or multiple sclerosis with doctors put into sharp relief the blessing of every painful step, every breath, every hug. 

Forty, for me, is feeling tired, worn out, and having a body that doesn't match the not-so-worn out spirit that's inside it. It's needing to get my life and my house in order to clear the way for the time and space and energy to spread love and joy to all around me. It's a year of celebrating small victories and enjoying the moments and music of life. It's time to learn the unforced rhythms of grace. 


Friday, December 26, 2014

Christmas Eve on Hoover Avenue


I sit in a silent house.

This is the first miracle of this Christmas.

It's 7:45AM on Christmas Eve morning. I've made biscuits, sorted laundry, done a load of laundry, prepped some food for later, folded laundry, and done a dozen miscellaneous tasks. A turkey breast is cooking slowly in the corckpot and there's homemade cranberry sauce in the fridge. 

The children are ALL still asleep. All of them. Even the ones who usually get up at 6:30am. 

I put five little gifts next to the tree. Gifts for my children, who will be incredibly surprised when they open them. Perhaps not pleasantly surprised, as they are the gifts that we have been promising since Thanksgiving: a nosewarmer for Alexander, new dart for Zachary (HIMYM reference), holes for Haley (she said she had a (w)hole list of stuff she wanted, so we told her we'd give her holes), coal for Coren (although he may have wanted the Ninjago minifigure, Cole) and a ski mask for Alia. I do have to admit that Alia will most likely fully accept her gift as her one and only Christmas gift and be overjoyed with it. For over a month, when asked what she wants for Christmas, she's said a ski mask. She may not want to use it on our 60 degree Farenheit Christmas Day, though. Their "real" gifts are waiting in the basement, but we don't need to tell them that. 

My husband was off to work at 5am. I'm feeling lonely here without him on what should be a family day. He will get to join us for worship this evening, which will be wonderful. 

Zachary is the first downstairs, muttering unintelligible words to my "Blessed Christmas Eve" greeting. Coren is close behind, mumbling some form of greeting. Alia bounds down the stairs in her usual energetic way and gets to work making eggs for whomever wants them. I don't expect to see Alex for a while. I predict Haley will emerge within a half hour. 

What a peaceful start to what I hope will prove to be a wonderful Christmas.


Christmas Eve. The children are finally in bed after a long but wonderful day. 

While I continued down my OCD Christmas preparation path, the children played and stayed out of my way, lest they be asked to help. They did make an epic Christmas Eve dessert: a tree made out of marshmallows, chocolate, and gummy worm pieces. We waited, and waited, and waited for it to be time to head to church. 


How I loved singing Christmas hymns with the choir before worship and witnessing my children help with worship, two as acolytes, Alia as an usher alongside her Papa. Haley's beautiful voice singing the Chirstmas Rose brought tears to my eyes as I struggled to contain my emotions while singing. Once home, we had a wonderful turkey dinner, followed by the great Opening of the Gifts. 



The children were amused by and happy with their gifts. The "gag" gifts, that is. Well, maybe not Coren, the recipient of a lump of coal...


Genuinely surprised when Daddy went to get the "real" gifts, their excitement grew even bigger. After they opened their gifts: a microscope and anatomy/physiology flash cards for Alia; a Ninjago set and Egyptian digging kit for Coren; a Wii Fit board and Wii Fit Plus game for Haley; and snowball makers/launchers and Magic the Gathering Cards for Zachary and Alex, I marveled that we spent a grand total of $36 on all the gifts combined, thanks to thrift stores and sales. Who says Christmas needs to break the bank? 

Christmas Eve FAITH5 brings highs of spending time with family, singing, helping, and being together. 

Not yet ready to nestle all snug in their beds, the children have retreated upstairs to watch a movie while Jim and I try best not to fall asleep. 

Love pours over me as I reflect on our Christmas Eve. That my kids gave their time and talents to help make worship special for all; that they were content with silly gifts and overjoyed with the "extras," gives testament to their kind hearts and generous spirits.

I can barely wait for tomorrow to begin. But first, sleep. 


Tuesday, December 23, 2014

But I Get Up Again

Disclaimer: This is the strangest Christmas Eve Eve post I've ever written. The songs are not Christmasy, but I do use the word Christmas several times and have a Christmas wish at the end. Please bear with me...



Sometimes you just need to have a good cry and a small nervous breakdown in order to turn things around. Last night, I did just that. 

This morning, I still felt like I was losing my mind. Not a good feeling to have on the day before the day before Christmas. I put on Christmas music. I made gluten-free/dairy-free Rice Krispie treats with my twelve year old daughter. This, by the way, is something that I shall never ever ever ever do again, as the process is to make glue and then try to mix dry cereal into the glue and then attempt to smear this gluey cereal onto a baking sheet and making it stick there instead of everywhere else. I'm still picking Krispies off of myself nine hours later. Come to think about it, somewhere in that mindboggling complex process I started having fun. Laughing even. I cleaned up around the house a little. Amazed that I was feeling sort of ok, we were off to choir practice. We were on our way with One Day by Matisyahu, the girls singing along. 

The words hit hard: 

Keep on moving though the waters stay raging   In this maze you can lose your way   It might drive you crazy   But don't let it faze you no way
Gotta hold on   Livin life day by day   Gotta hold on   Put your focus on that one day

Sometimes in my tears I drown  But I never let it get me down   So when negativity surrounds   I know some day it'll all turn around...


At choir we sang, and sang, and sang some more. Christmas hymns, mostly. The beauty of the words and music, the touch of the Spirit, the meaning of the season, all perched gently on my heart, waiting for it to open enough to let them in. Calmness washed over me as I raised my voice in praise. 

My spirit very much lifted, we headed home. On the way home, we cranked up the music at the first notes ... 


I get knocked down
But I get up again   You're never gonna keep me down    I get knocked down   But I get up again   You're never gonna keep me down
And I meant it. 

Yes. Tubthumping by Chumbawumba was my song of victory(ish) over darkness today.

As I sat down to a dinner of pancakes and eggs, prepared by my children, I held gratitude in my heart. Gratitude opened my heart to receive all that worry and stress and sadness had locked out. 

Tonight, I intend, to move through the next few days holding gratitude close; to recognize God in all things; to sing songs that remind me of the good times, and to sing songs that remind me of the better times. (Even if I'm still sad some of the time.)

I hope this Christmas brings peace to your heart, your home, and your life. 
Blessed Christmas. 

Monday, December 22, 2014

Bleak Midwinter


In the bleak midwinter, frosty wind made moan, earth stood hard as iron, water like a stone; snow had fallen, snow on snow, snow on snow, in the bleak midwinter, long ago.
Some days darkness wins.

Some days, it doesn't matter how hard you try, how much you pray, how much you logically know that somehow, someway, things will work out, depression wins. The weight of life's circumstances becomes too much to bear. Every single task becomes an insurmountable mess.

It's almost Christmas and I'm supposed to be enjoying time with family, anticipating the birth of the Christ Child, and all that happy .... stuff. But I can't. Not at this moment. In this moment, the darkness is closing in and the weight of my illnesses is upon me and the fact that it's ripped my family's finances to shreds for reasons too many to count fills me with guilt. If it weren't for me, for my illnesses, we could pay bills. We could go places, do things, fix our house, and the list goes on. 

It's one big pity party in my brain and I want nothing to do with it. I want to get out of my head and into the moment and concentrate on the little things, the good things, the holy things I can do with my family. I want my mind to rest in assurance that when the end of the month comes and bills are still needing to be paid, there are people who love me who will help out until we get back on our feet.

The darkness doesn't allow for such positive thinking. Depression dwells on the lack, encourages the guilt, changes a loving family home into a desolate wasteland of things needing to be fixed and replaced, full of obstacles for my malfunctioning body. Guilt hinders my ability to ask for the help we need. Again. Every time I try, I burst into tears. 

So I do the only thing I can do - I put on Christmas music and take lots of deep breaths and clean things and make crockpot cranberry sauce. I stick a candle in a can of jellied cranberry sauce for my newly minted sixteen year old, light it, and lead a rousing if off-key round of Happy Birthday for the young man. I say yes to kids staying up late. I say yes when the 14 year old requests staying up just a bit longer to watch Slapsgiving 2: Revenge of the Slap (*waves to HIMYM fans*). I cry. I write. I love and love and love because it's the only thing I have left to give.

And I feel deeply sad the entire time. There are good moments, even magical moments here and there, but the underlying gloom is unyielding. Tonight I pray for sleep - for good, restful, nourishing sleep and a better outlook in the morning. 

Whether or not it comes, I know things will get better. The Light is coming. Whether I'm happy or sad or rich or poor. And that's all that matters, especially now. I hold on to the coming of the Light. 

What can I give him, poor as I am? If I were a shepherd, I would bring a lamb; if I were a Wise Man, I would do my part; yet what I can I give him: give my heart. (In the Bleak Midwinter, C. Rosetti/G. Holst)

Sixteen

 It's just plain scary.

No, not that creature ... the fact that the young man inside that costume is sixteen. Sixteen. 16. He can't possibly be, but somehow he is.

Good thing I told him he's not allowed to drive until he's 35. I'm not sure I could handle one of my children driving. Driving. Being old enough to drive. Sixteen.

I've been preparing myself for this number for a year and it hasn't helped. It's still shocking when I think about it.

He's not your typical sixteen. He's himself. He's not embarrassed to watch VeggieTales with his siblings, while at the same time enjoys being treated as an adult member of the household. He's an encyclopedia of knowledge when it comes to Magic the Gathering and other things that hold his interest. He revels in being taller than his mother. He has an awesome sense of humor and every once in a while allows his mother to sneak in a hug-like show of affection. 

He's sixteen.



That means I get to kick him out of the house in two years. 

He tells me that I can't do that, because if I don't let him drive until he's 35 he'll have to live with me that long. I tell him he can walk. Or ride a bike. Then I remember that that would take actual effort and require going and being outside for extended periods of time and realize that, except for the magical Camp Calumet, the young man is seemingly allergic to being outdoors. Perhaps I'll have to shave a few years off the driver's license thing. 

I'm not sure when I'll get over the shock. Perhaps in eight days when the number forty becomes unusually significant in my life. Maybe not. 


How is it that sixteen years have passed since this quiet, funny, intelligent, kind, remarkable young man came silently into the world? Sixteen years since my heart started to exist outside my body. This child has taught me so much in those years - how to be a Mama, how to be a Mama to children with Aspergers, about the joys of breastfeeding and babywearing and unschooling and knocking on your teenager's door and then whacking him over the head with a cardboard tube. 

I love you, Alexander. Even if you are taller than me. We'll talk about the driver's license thing, but really, if you can't steer a wheelchair without threatening to jettison your own mother ...

Thursday, December 11, 2014

Insistent Darkness


Insistent darkness lingers later each night, its tendrils darkening my mood and shredding my sanity. I'm a mess. Physically, emotionally, and mentally. I struggle with seasonal depression this time of year, and add to that the stress of being off meds and increasingly ill and having no idea what is going on with my body, and all the deep breaths and prayers in the world find it difficult to combat brain chemistry. I am doing ok, really, it just takes work. Hard, tiring work. 
Every time you cross my mind, I break out in exclamations of thanks to God. Each exclamation is a trigger to prayer. I find myself praying for you with a glad heart. I am so pleased that you have continued on in this with us, believing and proclaiming God’s Message, from the day you heard it right up to the present. There has never been the slightest doubt in my mind that the God who started this great work in you would keep at it and bring it to a flourishing finish on the very day Christ Jesus appears.  Philippians 1:3-6 MSG

Sometimes the right words just plop themselves in your lap right when you need them. This reading was right there waiting for me tonight, encouraging me. 

Paul's letter serves as a reminder to me that, right here in the middle of my mess, there is God, there is Grace, and there is something for which to be thankful. 


There are people in my life who make all the difference in the gloom: a friend who makes my day with pumpkin spice coffee; a boy who shows concern for my well-being and then says he'll pray for me; people who sincerely utter the words, "if there's anything I can do to make your life easier," or otherwise offer help; and all those who really want to know how I'm doing and listen when I tell them without trying to fix things. A teenager who looks at and longs for pets with me and laughs with me at the truly odd lot that is out there awaiting adoption or a smallish child who cuddles up with me to share their warmness chase away the gloom. 

These people, although they probably don't realize it, shine God's light into my life and encourage me beyond measure. Every time they cross my mind, I break out in exclamations of thanksgiving to God, each exclamation a trigger for prayer, each prayer bringing peace and joy and light to my heart. 


As darkness insists on its leisurely path, I need not worry. God's Light shines brighter in my life than any darkness and is reflected in the caring words and actions of those I am blessed to have in my life.

Saturday, December 6, 2014

Free Admittance

"My high today is that we got to go see the Christmas lights"   "My low today was that my brother got hurt."
"My high today was spending time together as a family playing games."  "My low today was that people were not treating each other with respect earlier, and people ended up getting hurt."

Each night before bed, my family gathers together to share, to read, to talk, to pray, and to bless. We share the highs and lows of our day. Each one of us puts to words the best and the worst things from our days. Many days, the lows are mere disappointments, but some days they are weighty subjects - the weight lifted from the barer through sharing, talking, and praying. Each of my children don't hesitate to share, which is something I treasure. That my teenagers will freely admit to their darker feelings and experiences in the safety of our family circle is invaluable. That every teen would have such a safe, open place is my dream.

Our nightly circle is a safe space where there is no judgement, only listening. With no immediate intention to fix the lows, we recognize, understand, and pray about them. With no consequences, only helpful support for mistakes made, our children feel comfortable being open and honest. Discussion and support follow naturally afterwards, and our brains naturally work things out as we sleep. Sharing our best and our worst with each other creates compassion and understanding that lasts long after our evening ritual ends and extends beyond our family, into the world around us.



That our discussion is grounded in the Word, read after sharing and before talking, means a great deal to me. Often one of the children will think of a reading that might be helpful to someone's low or the "reading of the day" from whatever source we've chosen to use will shed some Light on things or offer a firm foundation for our discussion. 

We pray in so many ways. Some nights we pray for each other. Other nights we pray for loved ones, or those going through difficult times, or people on both sides of whatever tragedy has made the recent news. Occasionally the "one word prayer" makes an appearance, each family member contributing one word to the prayer until it is done. On those nights, laughter is often the outcome as we pray for zombie squid and homeless ants or somesuch. 


With a cross traced on their foreheads and the blessing, "Child of God, Jesus loves you and so do I!" our children drift off to sleep confident they are loved and valued. 

We share, read, talk, pray, and bless our way to healthy family relationships. Thanks to wonderful book, website, workshop, and conversations with Rich Melheim and others, this family ritual has grounded our family in faith, love, hope, and understanding. 



Friday, December 5, 2014

Hurry


Patience is something completely lacking from my being when I was a child. I had none. Zip. Nada. I loathed waiting. Waiting for Christmas was akin to torture to my young self, but there was something magical about that particular type of anticipation which I carry with me today.

While my ability to practice patience continues to be a work in progress, I am in love with the waiting that is Advent. It's just the beginning of Advent and I'm bursting with anticipation. Our Advent Spiral is set up, our Christmas tree created from lots of lights and things found around the house, Christmas books are wrapped to open and read together each morning and our Advent calendar (online this year!) is awaiting our nightly visits during our FAITH5 family devotions time.

It's all so very exciting. We need to hurry up and wait! 

It only seems fitting that on our first Advent night we read a book about Jesus as a boy, about Mary telling Him the stories of Love surrounding His birth. About her excitement following an angelic visit, Joseph's immediate reaction upon hearing that his betrothed was pregnant, about shepherds and angels and magi ... and elephunks that looked more like camels. The waiting Mary had to do: waiting for Elizabeth to give birth; waiting for Joseph to come to terms with God's plan or divorce her; waiting to give birth to Jesus; waiting through her fears for His adult life as He grew from baby to child to adult. 



Thankfully, my family didn't have too much time to wait from the first Sunday in Advent until we celebrated St. Nicholas Day at Tuesday Night Sunday School. December 6th will swiftly arrive, bringing with it a visit from St. Nicholas and the first of three gifts for our children this season. St. Nicholas usually gives an experience - tickets to a performance, museum, science center, movie, or other exciting adventure - instead of a thing. And then the waiting to go to that place or have that experience begins!



Each morning we open and read together a Christ-centered book in anticipation of His arrival. Every Advent night we open another "door" on our Advent calendar, this year online with alternating devotions and fun. Each day we add a stone to our Advent spiral path, moving closer to the Birth, and adding a word, idea, or concept to concentrate on as we move through our day: Love, Family, Holy, Whimsy, Compassion, Giving, Fun, and Spiritual Gifts among them. And we read the Sacred Story of Jesus' birth one tiny book at a time.

As we wait, our hearts open to Love come down and Grace gifted. From Mary's first angelic visit to the visit from the Magi, we wait and celebrate. 
Hurry the Lord is Near! 

Thursday, December 4, 2014

People Keep Asking


People keep asking me what I want for Christmas. And for my birthday - the big 40 - which is five days later. "Something you want, but would never buy for yourself," one friend asked. I honestly have no idea what that is.

So much of what I want is out of reach ... making my home handicapped friendly and adequately organized, a second bathroom, a freezer full of meat so I don't have to worry about feeding my family, a way for me to make money to contribute to my family despite my ever-growing health issues. A diagnosis for my new symptoms and plan for treatment for all my medical issues. The energy to get things done and keep my house clean.

I suppose what I really want is peace of mind. Knowing my house is functional, that I can put food on the table, and that we can pay our bills without struggling.  Being able to purchase health/medical items not covered by insurance without feeling guilty for taking money away from my family's needs. Knowing the possibilities of what my physical future holds instead of being off meds and left wondering and getting worse.



I've thought, and thought, and thought. Wool socks? An electric blanket? I don't know. My mind is consumed with the huge life issues and I can't think on a smaller scale.

Enough. I want enough. Enough of a change to my house where it is livable for me with decreased mobility. Enough money to pay all the bills every month. Enough food to get us through without mounting panic as the month wanes. Enough knowledge of my health issues to have a plan of action.

And I want to feel like enough. Like I'm contributing enough financially and around the house. Like I have enough energy and brain power to be a good enough mother, wife, and friend. 

I know all of this will come with time, hard work, medical treatment, and with persistence. At least that's my hope. 

I still don't have an answer to the question that people keep asking, but I appreciate more than words can say that there are people in my life who care enough to ask. So I guess it comes down to this: your love and caring is enough. 


Monday, December 1, 2014

Ways to Torture Your Kids, Christmas Edition



1. Ask them what they want for Christmas. Every time they say something, shake your head about their choice and ask, "What else?"

2. Every few days, say, "You wanted a __insert item child does NOT want here ____, right?" Act upset with yourself when they tell you they want something different.

3. Wrap their Christmas gift early - or better yet,  a random household object - and leave under the tree or anywhere else in the house. Every once in a while, comment about how excited you are for them to open their gift.

4. Wrap their gifts in layers of wrapping paper, yarn, bags, and tape. Make sure the final product is much bigger and a totally different shape than the gift itself.

5. Watch the same holiday movie from your childhood over and over and over and over.

6. Replace all Netflix queues with only Christmas movies.


7. Have Christmas music playing at all times. Well, except when you're watching Christmas movies.

8. Start baking Christmas cookies right after Thanksgiving. Let the kids help roll, cut, and decorate sugar cookies or another family favorite. Announce as you take the first batch out of the oven how thankful you are to get the baking done early, and how every single cookie is going into the freezer for all the Christmas festivities coming up.

9.  Arrange for care for your kids for a day and tell them you're going Christmas shopping for them. Post pictures of yourself on facebook throughout the day - at the movies, out to dinner, etc. and tag your kids in the photos. Then post a picture at the dollar store with the description "Christmas shopping for the kids."

10. Ask your children at least two dozen times a day if it's Christmas yet.


Tuesday, November 25, 2014

Possessed


I don't want my kids to get anything for Christmas. No, this isn't the Bah Humbug of blog posts. Let me clarify: I don't want my kids to get any things for Christmas. As their rooms can attest, they have too much stuff. Too much to keep track of. Too much to take proper care of. They simply don't need more stuff.

Now, I'm sure they'd tell you otherwise. Normally I don't particularly care about the amount of stuff they collect, unless I'm tripping over it or it is otherwise causing a hazard. The thing is, some of their stuff has infiltrated the rest of my house. Haley, the baker and soapmaker has supplies in the pantry, kitchen and dining room. There are Magic the Gathering and Pokemon cards everywhere. Legos keep somehow getting loose. I won't even describe to you the jars of internal organs or eyeballs, and all the skulls and bones laying about. 

I've had enough.

It's not the amount of stuff that my kids possess. It's the number of things that possess my kids. 

I used to be the kind of person who held on to everything because it all had sentimental value or I might be able to use it someday. I also had my own idea of "clean" and "organized," which mainly had to do with piles of stuff on the floor. And there were things that took over my world, that I could not have lived without - that possessed me more than I possessed them. It took a lot of time, life experience, and a lot of effort to get past my attachment to things and start letting things go. 

I do not want my kids to continue on the path toward being possessed by possessions. I want them to revel in life, in experiences, in interactions with others, in exploring their world. Perfect gifts for my children would include gift certificates towards time at Camp Calumet Lutheran in Freedom, New Hampshire; museum memberships or tickets (the Connecticut Science Center and Old Sturbridge Village come to mind); movie passes; or simply an invitation to lunch. One child would love blacksmith classes, another horseback riding time. I'd much rather people spend time than money or give experiences rather than stuff. Four out of five of my children agree. I asked. I'm guessing other children would feel the same, given the option. 

Invest time, not money, on children this holiday season. The benefits reaped will be well worth the expense. 








Monday, November 24, 2014

On The Verge


I've spent most of the past six months on the verge of tears nearly twenty-four hours a day. From sheer joy to intense pain, life lately has been tear-inducing.

Have you ever had a moment when you're going about your day and all of a sudden you're just overwhelmed with ... with...with something you just can't put your finger on. You just want to cry and you don't know why. That's been me a lot lately. 

I was ticking things off my to do list: call so and so, organize this, put away that, update this event on facebook, and BAM tears. They stopped me in my tracks. They came after posting an event page for our church's Tuesday Night Sunday School in a facebook group and being met with two simple words "sounds amazing!" in response. It IS amazing. It's beyond amazing. It's family. It's love. It's doing and giving and believing and learning. It's people getting together and sharing something too deep and meaningful for words, even though on the outside it just looks like pizza and lessons and songs and crafts.  I feel so blessed to be able to be a part of that. 

And then I got up to get some things done around the house and hit a wall of pain. I'd fallen earlier, my legs giving out for no apparent reason, and hurt just about every part of my body. Tears from pain, but also from fear streamed down my face. The legs giving out thing is a big deal. A huge deal. A possibly life-changing deal. The what-ifs flood in, a cascade of tears with them. 

Reading through my kids' daily homeschool notebooks, I come across a page on which my child has written things he loves about our family. It melted my heart. All my worry about whether or not the kids take on too much around the house, whether or not they get to go enough places and experience enough things, whether or not my illness is ruining their lives vanished. Tears of relief threatened to dot the page as I read it again and again. 


And then another...



Pulling myself together, I continued to read the other kids' notebooks, and was propelled back to tears by more amazing, loving words. Especially these....


Some days I don't feel like I live up to those words, but I do my best. My heart is on the verge of bursting with gratitude and love. I thank God every day that life's blessings outweigh the struggles. 




Monday, November 10, 2014

Dearest Body


I am writing to you to request that you please stop trying to compete with people more than twice my age.

It would be wonderful if you could get your act together enough for me to go back to walking unassisted, although I do have to say that my canes, crutches, and wheelchair are now fairly stylish thanks to special-ordered canes and decorative duct tape for the rest. But that's beside the point - walking is good. Really. At least some of the time. And not the shuffle around in a Tim Conway Old Man-esque manner. (OK, that reference just made me feel old!)

A medical professional's suggestion of a walker is a little over the top, isn't it? Chasing five or six or a dozen children while shuffling behind a walker would be a sight, I suppose, but not one I'd like to inflict on myself or others.  Especially since I'm imagining that happening with me in a housecoat for some odd reason. I'd much rather be a cane or crutch-waving curmudgeon.

Also, if you could fix my "early warning system," that would be wonderful. If not, I'm not sure what I'll do...Depends.

One last thing- now that we're off Remicade, can you be gentle with our friend the liver? I really don't want to add that overly scary "we need to test you to make sure this med isn't going to kill you" medication to my collection, nor do I want to put an insane amount of prednisone in my body on a daily basis. We don't want to inflict me on others if it comes to that.

Thank you for your time and consideration.

Me


Wednesday, November 5, 2014

Breathe Deeply and Pray


 Sleep circles, taunting my pain-wracked body. All I can do is breathe deeply and pray.

My strong fragile child battles migraine and mood. His mood encourages my anxiety, which is already having a field day due to precarious health and unanswered questions. I breath deeply, coaxing gentle words to the tip of my tongue. I pray for relief for us both.

Reflecting on the day so far, it can't possibly be just past noon. Enough has transpired in one morning to fill the entire day. Words buzz around in my brain as it attempts to get a firm grasp on any of them. An appointment with my rheumatologist produced unexpected news: stopping Remicade, referral to a neurologist, the need for a series of MRIs, possibilities including nerve damage and multiple sclerosis thrown about. Unanswered questions continue to pester me as I breathe deeply to calm my nerves and pray in an attempt to hand my troubles over to God.


Soul soothed after a phone call from a friend, surprise catches me once again. Part one of the MRI I was told would be nearly impossible to get approved is scheduled for three days from now. At 7AM. Forty-five minutes away. Laughter and tears assault me at the same time. How did this happen? Nevermind. I don't care. I'll take it. It's not like I sleep anyway. Breathing deeply to quiet my pounding heart, I utter a prayer of thanks for the diving intervention that was necessary to make this MRI happen this quickly. 

The day isn't done with me yet. Not two hours later, the phone rings again and the second of three needed MRIs is scheduled. I breathe in peace and breathe out stress as a prayer of thanksgiving once again crosses my lips.


A bit later, a young man of perhaps eleven or twelve asks me about my crutches, not remembering seeing me use them before. His words of comfort and support touch my heart and buoy my spirits throughout the evening at Tuesday Night Sunday School. Friends ask how I'm doing, knowing the answer might not be what they want to hear, offering prayers and love to carry me through.  Several times throughout the evening, I breathe deeply in an attempt to hold tears at bay - sometimes because of pain, mostly because of thoughtful, kind people. Silent prayers of gratitude for my wonderful church family fill my thoughts.

Finally in bed, the days events come to rest on my overburdened brain. It occurs to me that on days like today, all you can really do to navigate the highs and the lows is to breathe deeply and pray. 

Tuesday, October 21, 2014

Dread


It's almost here. The appointment I've been needing and looking forward to, yet at the same dreading with every fiber of my being. The appointment that will hopefully put me on the path to solving another piece of my health puzzle, but which could also come with life-changing news. I finally saw a neurologist to figure out why I have numbness and tingling in my arms and legs, why I have a constant stabbing headache, why my neck hurts all the time, and why my legs go out from under me without warning. I had extensive x-rays to help determine the amount of fusions going on in my neck and lower back due to ankylosing spondylitis. Now I have an appointment with my rheumatologist to put it all together, to figure out if he has a better picture of what's going on, and to find out how we're going to proceed.

I want answers. Really, I do. But a sense of dread has come over me since the appointment showed up on my calendar. The what ifs are taking over the rational just-wait-and-see-there's-no-use-in-worrying part of my brain. I'd love to be able to turn it off., but nevertheless, the wait of it is crushing me. Suddenly I'm exhausted. Feeling like I need something, but I don't know what that thing is. Feeling alone.

It's strange how confident I am that I will be able to come to terms with whatever the diagnosis, that God is with me through all of this, that I am supported by friends and family - yet how much fear I'm experiencing in waiting for answers. My faith is battling my OCD and it's driving me crazy.

Faith: God will get me through this.
OCD: But what if your entire life is going to change with just a few words from the doctor?
Faith: Then I'll take deep breaths, pray, cry, be said, be angry, be thankful, and move forward knowing that I can get through this.
OCD: But what if you have to stop helping out other families and can no longer do the things that get you out of bed every day?
Faith: Then I will find other things I can do.
OCD: What if you'll end up paralyzed for the rest of your life?
Faith: Then I'll adjust. And what if there's nothing to worry about at all?
OCD: What if...what if ... what if...
Faith: Deep breaths, prayer, take comfort in God's Word and God's grace...
OCD: What if...what if... what if!!!???!!!
Faith: Don't worry. God is with you.


I can't turn it off. I sleep for a couple hours then wake up, the battle raging in my mind all night. I go through my days needing to constantly be doing something as to ignore dread's grasp on my being. I pray. And pray. And pray. Some days are better than others. 

Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.   Matthew 6:34
And so each day I count my blessings, recognizing all the good that God is doing in my life. As much as my OCD focuses on the what-ifs, I try to focus on the then God wills. 
 

Monday, October 6, 2014

Best Intentions


An amazing woman I know, in a facebook group she set up as a landing place for parents doing their best to parent gently while coping with the many manifestations of post-traumatic stress disorder, started something that has turned into a daily ritual for me, and has been life-changing. It's so simple, yet so critical. 

First, two simple words help center me for the day ahead: I Intend...

Today, I Intend: To live in the moment, To be open to Joy, to make it the best birthday party ever for my son by encouraging him to lead the way through the Peabody Museum of Natural History with his friends and releasing any expectations I might hold of what our time there should look like. To be gentle with myself as I navigate the museum in wheelchair or on crutches, listening to my body's limitations, but not letting those limitations affect my mood. 
Today, I Intend: To center myself in the Water and the Word. To tend to the earth. To be a good steward with my time, talents, and possessions. To have patience, to act in kindness, and to be gentle with myself and others.
Today, I Intend: To treat myself gently. To not push myself to do more than I should. To let the house and the kids be messy. To take my pain medication, use my mobility devices, and to pray instead of worry about my physical future. 
Today, I Intend: To balance much needed rest with much needed housework. To be patient with moody children and children working through sensory issues. To be gentle with myself as I deal with extreme pain.
Today, I Intend: To be patient with my children and myself. To let go of expectations for the day and just let it happen. To listen more than I speak, to give more than I take, and to say yes more than I say no. 
This simple practice helps me be mindful of how I want to proceed through my day, helps me keep myself in check, and is easy to go back to throughout the day to remind myself how I wish to proceed.

Then, in the evening, three words fill my being with gratitude for life's blessings ... I'm Thankful For ... 

Today I am thankful for amazing friends whom I don't see nearly enough. Friends who ask me, and REALLY want to know, how I'm feeling, how i"m doing, and are concerned that I have too much on my plate. 
I am thankful for a wonderful outing to the museum, for lots of smiles and excitement, for crutches to get me around, for having a vehicle my friend could borrow in an emergency, and for lots of good things to look forward to this week. 
Today, I'm thankful for clean water, nourishing food, shelter, warmth, and family. I'm thankful for each step, each breath, each tear, and each laugh. I'm thankful for community, for music, for unexpected conversations, and for giving my time to others.
I have to admit that I more often than not am to tired or ill to post my gratitude, but every night share it with my family as we share our highs and lows of the day with each other. 

Composing my intentions at the start of the day, and acknowledging life's blessings at the end of the day have greatly improved my life, my outlook, and my mood. This ritual has helped me navigate daily doses of Angry, increased pain, and decreased ability to do many things in life. I intend to live life in joy and carry gratitude with me always. 

Thanks, Rose! 

Friday, October 3, 2014

Health-O-Meter

I wish there was a Health-O-Meter that could let me know what my health is going to be on any given day. Life would be so much easier! You see, on days like today, I never know when my body is going to say enough! It could be that I get up, showered, and dressed with minimal problems. I could even get to the grocery store and do a little shopping. Or maybe a lot of shopping. Perhaps I'll start feeling ill just minutes after arriving at the store, or halfway through shopping, or when I get to my car. Maybe I'll need help getting my groceries in the car, or maybe I'll be able to do it myself. I may get the groceries from the car to the house, or need someone else to do it. Then there's putting away the groceries. Occasionally I'm well enough to accomplish that task immediately upon returning from the store. Mostly I get the fridge/freezer stuff put away and then call it a day ... or a week.

Perhaps I have an after-the-fact Health-O-Meter...


Incredibly Ill: Didn't even consider going to the grocery store even though all we have in the house is a giant head of cabbage and an overabundance of mozzarella cheese.


Very Ill: Thought about going to the grocery store. Made a list, even. But then decided otherwise once my feet hit the floor.


Just Plain Ill: Made a grocery list, coordinated it with coupons. Got to the store, and halfway through shopping, and realized there was no way it was all getting done in one trip. Checked out with what I had and called it a day.


Slightly Ill: Grocery list, coupons, and a full shopping trip accomplished. Freezer and fridge stuff put away. Perhaps if my family members trip over the rest of the groceries strewn across the kitchen floor, they'll put them away. But most likely not.


Feeling OK: Grocery trip with coupons completed, All groceries put away. 


Feeling Good: Groceries put away AND beef divided and frozen in 1 lb. bags; chicken breasts marinated and frozen, some cut up and marinated for kabobs, 


Feeling Great: All of the above, and the fridge cleaned and pantry organized before shopping.


So ... if you should happen to arrive at my house and find groceries everywhere - beware! I'm not feeling well. If the kids are eating cabbage pizzas, please come back with a bag of apples and a jar of peanut butter ... and don't mind me while I take a nap. 


Wednesday, October 1, 2014

Making Sense of Worship


My feet are cold. People are shuffling their feet, flipping hymnal pages, sniffling, whispering, rifling through bags and purses, all while the Pastor's voice echoes off the walls. The flowers smell strange today and there's another scent I can't figure out - maybe some kind of cleaner, or someone's perfume. It's cool in here, but the light above my head is producing too much heat. I think I might need to change seats, but my only options are next to my sister or a stranger. Perhaps I'll stay put. Why do we have to sit in front? All those people behind me and I don't know what they're doing. It's quite distracting. Just to get out I have to maneuver through a sea of them. And there's a high pitched sound coming from somewhere - the sound system or the emergency light things, maybe? Now the vibrations of the organ are rattling my chest and my eardrums. It's so loud! So many different voices assaulting my ears all at once. Whew. Silence. Well, not really silence. More shuffling and sniffling and whispering. Noise, quiet, noise, quiet, stand up, sit down, stand up, sit down, speaking, singing, flipping pages, sitting still, being quiet, more noise again. I almost forgot - it's close to the Sharing of the Peace. I need to get out of here before all those people want to, no...expect to, touch me. At least I'm used to the taste of Communion now and can get a drink afterwards if I need to. Worship is almost over. I hope I can get to the door before too many people get up. I need to breathe in the empty hallway before everyone descends on Coffee Hour. I need to get and eat my food so I can escape to the van and sit alone for a while. 





I'm so glad we're sitting in the front row. I love to see all the stuff that's going on - the flickering of the candles, the banners and the cross. It's fun to see Pastor's face and hear him clearly as he gives the sermon. Look at all the colors of the flowers. I can smell them from here and it's great. I wonder what they feel like. Look at the faces behind me - a sea of colors and movement and noise. Aww, that song wasn't very long. I love the rumbling of the low notes. Argh, it's too quiet now. Maybe I'll translate the bulletin into code or draw on it or maybe I can make a stamp by drawing something on my hand and trying to stamp it on the bulletin. Oooh, I just thought of something I need to tell Mama. Oops, I forgot to use my quiet voice. It's too quiet in here. I'm supposed to sit still, but my feet won't stop moving. I'm thirsty. This sermon is long. Do people really think God is doing it all wrong sometimes? God's grace is a mystery? I love mysteries. I need to tell Mama about that episode of Scooby Doo where ... ack! I forgot my quiet voice again. And about not talking during the sermon. It's so hard to be quiet when it's so quiet in here. I must have been sitting still for an hour. I just can't keep my legs still. Mama said it's been eight minutes not an hour. Can't, keep. my. feet. still. I need a squeeze now before I launch myself. Must get hugged tight if I'm going to make it through the sermon. Oh, good, it's over. Another song. I need a drink and to walk and to spin my arms around and around until they're too tired. I'll ask Mama to take me. I feel better now. Time to share the peace. I need to find Mrs. Finer and Ellie and Gramma ... and ... and ... Time to put the money in the plate. That means it's almost Communion. I'm so glad we're sitting in front so we can get to go first. More things to say and songs to sing and I can stand up and move my feet and stretch and get some of this energy out and more energy in. 




Children and adults on the autism spectrum or with other special needs experience worship in a very different way than the typical population. Some are overwhelmed with the sights, sounds, smells, vibrations, and activity at worship. Others feel overwhelmed trying their best to be still and quiet. Some experience both at the same time. 

What can we do to help? Don't judge when they forget to use their quiet voice. Or when they get up and leave in the middle of worship. Or when they curl up in a ball and ignore you during the Sharing of the Peace. They are most likely not purposely being disruptive or disrespectful. They are more likely overwhelmed ... or underwhelmed ... whichever the case may be. They are definitely meeting their needs. 

A child with Aspergers once told me that sitting through worship is sometimes like trying to thread a needle while a skunk-sprayed dog is barking and running in circles around you and you're being pelted by a chattery squirrel throwing acorns at your head while snakes slither up your pant legs. Think about that for a moment. 

Many special needs kids and adults don't understand social mores and have poor impulse control. Some don't like to be touched, some seek touch as if it were a drug.  It takes a lot of energy and concentration to hold it together as much as they do during worship. And even if it seems like they're fidgeting, odds are they're paying closer attention to the sermon than you are. 

As a parent of a sensory-avoiding child with Aspergers (the first part of this post) and a sensory-seeking child with Aspergers (the second part), worship is an interesting experience for me. I have been the recipient of glares and stares during worship when a child is being loud or fidgety or dives under the chairs to avoid people touching him. I've tried to find quiet ways to leave the sanctuary with children having sensory meltdowns, and short of getting a straightjacket and a muzzle, I'm not sure I'll ever succeed. Although my sensory-seeker would LOVE a straightjacket. 

I've spent many a sermon hugging and/or swaying with a child - or in the bathroom or quiet room with a child in mid-overstimulation meltdown. I have allowed my sensory avoiding child to sit alone in the Fellowship Hall during worship and my sensory-seeking child to exit stage left and find a place to flap his arms and walk in circles until he can regain his composure. I've read more sermons online than I have experienced in their entirety in person. 

Please remember, we are ALL children of God. We all deserve to be treated as such - with patience, love, and grace.