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


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


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.


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


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.