Thursday, November 29, 2012

Somebody

Somebody made the mistake of falling asleep in a house full of rannygahoots.


Somebody else thought he could use a bit of decoration.








Somebody didn't think it was funny at the time, but when somebody else showed him the pictures, he couldn't help but laugh. 

Even in your sleep, the rannygahoots will get you...

Wednesday, November 28, 2012

Awakening

I sat here with the computer in my lap for a full five minutes before I even began to contemplate what I was going to write today. My mind is blank. There are no thoughts. None. Nothin' in my noggin, to quote a certain absentminded fish. 

I started typing. Still nothing. 

What I need is an epiphany...which reminds me - on our way home from Pennsylvania, we took a detour through Port Jervis, NY, and when we were stopped at a light, I snapped a picture of a building with an awesome sign. I found it greatly amusing and oh, so what I need most mornings:


That's exactly what I need. Now. Coffee and, as the sign says,  "A Great Awakening." 





Tuesday, November 27, 2012

Truck Stop Angel


We had been on the road for nearly three hours when a little voice from the back seat said those five fateful words, “I need to go potty.” Not anywhere near one of our normal stops, we pulled off an unfamiliar exit and made our way through a maze of roads to the truck stop. Urging my aching body to move and leaving my husband to fill the gas tank, the kids and I went in search of the restrooms. “Meet me right here when you’re done,” I told the boys, as we parted ways. 

Several minutes later, we found ourselves in front of a glass case tubs of ice cream apparently screaming my children’s names on the other side. It seems I’d told the kids to meet me in front of the ice cream shop portion of the truck stop restaurant. It was 4:45AM.  My stomach rumbled at the scent of eggs, bacon, and toast- but I knew that half of us wouldn’t be able to eat in the diner due to cross-contamination issues and celiac. I turned to my husband and asked him what we should do about breakfast while the kids begged for ice cream.

In swooped our Truck Stop Angel. Beaming, he motioned toward the ice cream and said, “Let the kids get what they want my treat!” The children eagerly ordered their bowls of ice cream as we chatted with our new-found friend. Tommy, a trucker, was on the road for Thanksgiving and seemed to be missing his family. His son is thirteen going on fourteen like our oldest. He’s been to nearly every state, preferring country highways to major cities. Although he enjoys life on the road, he misses his family and was happy to see our big family together on Thanksgiving morning, travelling so that we could spend time with extended family. 

As we started saying our goodbyes, Tommy had one last treat for the kids each got a five dollar bill to spend as they wished.

Walking back to the van, my heart swelled with gratitude … for a truck stop angel who with one kind gesture filled five hearts with pure delight and brought light to my spirit in the process … and to God, who made sure we were where we needed to be so we could all be reminded about the spirit of giving, of gratitude, and of love with which we should live every moment of our lives.

As I navigate through life, may I always remember the joy and loving kindness shared in the wee hours this Thanksgiving … and should I run into an angel in a dragon-adorned truck, I will say again and always, thank you.

Monday, November 26, 2012

Just Say It

If you love someone, tell them - and tell others in front of them. It will make all the difference in that person's life- and yours.

If you have an issue with someone, talk to that person, not someone else, about it. They deserve that respect, and so do you.

If you need something, ask for it. Get what you need and bless someone with the opportunity to help. 

If someone is doing something immoral, unjust, or just plain rude, speak up. Help make the world a better place. 

If you're happy about something, shout it from the rafters. The world could do with a lot more joyful noise. 

If you have something to say, just say it. Don't wait until it's too late. 


Wednesday, November 21, 2012

All I Want For Christmas...

"What do you want for Christmas?" I've heard the question many times already and it's just now Thanksgiving. Thinking about it over the past few weeks, I've come to realize that there are many things I want - but most of them are God-things. Or win the lottery things (but I don't play). 

1. Sleep. Real sleep. The kind of sleep after which you awake refreshed and renewed. Preferably with a lifetime guarantee.

2. Peace of mind. How extravagant it would be to be caught up on bills, have definitive diagnoses and treatments, have home improvements taken care of, have children in their own spaces, and some semblance of organization and peace in our house? This instead of constantly needing to figure out how to afford necessities, if we're ever going to finish the basement, and whether or not we can make this house at all handicapped friendly...and trying not to worry about my yet-undiagnosed liver problems. Not having to worry about trees falling on our house every time there's a storm would be nice, too. For all my kids to be healthy and not to have inherited any of my myriad health issues would be miraculous.

3. A real vacation. You know, the kind of vacation where I don't have to take care of planning or our itinerary ... where I don't have to worry about what I can and can't eat and possible cross-contamination ... where the biggest decision I need to make is whether I need a wheelchair, crutches or canes ... to somewhere that fills my soul with peace and my spirit with joy.

4. Miracles. I want miracles to happen. I want peace to break out in the Middle East. I want Robby's brain to be restored. I want to go to the bathroom in peace.

5. Sweet stuff.  A pumpkin cupcake with maple frosting from Dee's One Smart Cookie. Months after having one of these, I'm still obsessing about them. They are the best cupcakes in existence. 

6. Comfy and pretty things. Compression gloves, a Wondergel seat cushion for my wheelchair, and tichels.

Most of all I'd like to 
7. Leave the world a better place. If I could, I'd make donations to places and causes that are close to my heart ... the Holiday Helpers Project to help families in need,  #teamrobby to help cover his medical bills, and Camp Calumet for everything they do.

As you begin your holiday shopping, should you feel so moved, pick me up a miracle or two if you come across any, send peace of mind my way, and if you're within ten miles of Dee's, stop in and get a cupcake for heaven's sake! 

In all seriousness, I urge you to think before spending. Think about what good that money is going to do, and for whom. Consider helping someone in need as well as buying what someone wants. Give the gift of time, of love, of kindness, of support. Shop small and local businesses and craftspersons. Support the arts. Improve someone's life. In doing so, you give three gifts: the first to the recipient of the gift; the second to the person you're supporting through your purchase or donation; and the third to yourself for blessing two - or more - people with your thoughtfulness. 



Full-ness

Packing and preparing for our annual trip to Pennsylvania for Thanksgiving, my soul feels FULL. Full of gratitude, full of love, full of peace.

I am thankful for my family - for five children who are smart, thoughtful, loving, and who still like to pile in my bed to watch a good movie or read books; my husband whose love for me seems only to have multiplied as our family has grown, who supports my decisions no matter how bizarre they may seem, and who is my hands and my feet when mine are failing; for parents who are supportive in so many ways, whose light shines through their good works, and whose sense of humor has served them, and me, well during this past year; for my in-laws who welcome us always with open arms, whom we don't see nearly often enough, and whose love and care conjures life-long memories for our family even during the briefest of visits; and for family and "adopted" family members without whom life would be lacking in ways to innumerable to list. You all abide in my heart every moment of every day. 

I'm blessed with a community of friends whose kindness, love, and mutual support nourish my spirit. With a faith community that lifts each other up, learns together, and strives to walk more closely with God. With sacred spaces that restore my soul. With new friends who have entered my life just when I needed them. 


That I can wrap myself in the warmth of love from family, friends, and from God whenever the need arises is the manna that sustains me. 

Those who challenge my point of view, disagree with me, and tell me like it is whether I like it or not - you are among the biggest blessings of my life. You open my mind to new insight; force me to see things I can't, won't, or don't see; and encourage me to grow. 

I am thankful for dis-ease - for psoriatic arthritis, spondylitis, depression, anxiety, celiac disease; and my other yet-to-be-diagnosed health issues; for pain and stiffness; and for exhaustion. Slowing down, appreciating life, learning to accept help, gaining perspective, eating well, finding balance, letting go of worry, and realizing the value in simple things are only some of the lessons dis-ease has taught me ... lessons that cannot be learned nearly as easily through a life of ease. 

My soul is FULL - not because life is perfect, but because my eyes are open to the blessings of the full spectrum of life. 

Monday, November 19, 2012

And Hear the Angels Sing




Alia is four years old. Like other four-year-olds, she's excited about Christmas and is working on her Christmas list. Unlike other four-year-olds, she has a human cadaver on her list. You see, she aspires to be a forensic pathologist ("a doctor who operates on dead people's bodies to figure out how they died"). Yes, at age four. She's not what you'd call a typical child. I had to convince her that she'll have to wait until medical school for human dissection. She told me a trip to Disney World would have to do ... but that's another story. 

And then our friend Sam died. Alia had all sorts of questions. The conversation went something like this:

Alia: What are they going to do with Sam's body?

Mama: You can't have it.

Alia: *sigh*

Mama: The doctors who tried to help Sam fight his cancer are going to look inside his body to study the cancer to try to figure out ways to help other people with cancer.

Alia: Oh, ok, that's a good idea.  But that's just his body. His soul is in heaven, right?

Mama: Yes.

Alia: So Sam is with God. I'll listen for him, then.

Mama: Listen for him? 

from Christmas Carols Old and New 1871
Alia: Sometimes at night when it's very dark if I'm very quiet, I can hear the angels singing. I'll listen for Sam. 

Lets just say I remained speechless for quite some time after that, too choked up to respond. Alia never fails to astound me, not only with her precociousness, but with her insight and her spirituality. And there are many things I'll miss about Sam ... his tenor voice praising God through song is one of them. 

From It Came Upon a Midnight Clear...
And ye, beneath life's crushing load, 
 whose forms are bending low, 
 who toil along the climbing way 
with painful steps and slow, 
look now! for glad and golden hours 
 come swiftly on the wing. 
 O rest beside the weary road, 
and hear the angels sing! 





Friday, November 16, 2012

Holidays, Family, and the Nursing Child


It's the time of year when we gather together with family and friends to give thanks and celebrate the holidays. It's also the time of year when many mothers of nursing children get barraged with questions from well-intentioned, and perhaps not so well-intentioned, loved ones. 

I started my breastfeeding journey nearly fourteen years ago - just days before Christmas. Here are some responses - some tactful, some not so much - that I've collected over the years (click on each section for easier reading):



 Happy holiday nursing! 

What We Do


What we do to the Earth, we do to ourselves and our children.

Treat the Earth with kindness and respect and it will only benefit our future - treat it harshly and our children will reap the consequences. 

What we do to each other, we do to ourselves.

One kind action can change someone's life for the better and have a positive impact on countless others. One unkind action can cause a chain reaction of anger or sorrow. When we act with kindness, we feel good, and certainly the opposite is true as well.

What we do to ourselves, we do to our children.

Children pay attention, closer attention than we think, to what we do, how we act, and how we treat ourselves. They learn how to treat themselves by how we treat ourselves. Be kind to yourself. Love yourself. Be imperfect and celebrate your imperfections. All the things you tell your kids, "You are smart. You are beautiful. You are loved..." tell yourself also. Out loud. I front of your children. 

What we do to each other, we teach to our children.

When we treat others with love, we teach our kids love - and to love others. When we unconditionally love others - all others - we teach our children to walk in the footsteps of God. If we say an unkind word about another or show disdain or malice toward another, we teach our children hate. We teach them to walk away from God. 

What we do impacts Life.

Our lives, our kids lives ...and family and friends and strangers and generations yet to come. Sow the seeds of kindness and love - toward the Earth, toward yourself, and toward others - so that future generations can reap the benefits of the world it will create.
















Wednesday, November 14, 2012

Home...


"The ache for home lives in all of us, the safe place where we can go as we are and not be questioned." ~Maya Angelou

Sam lived out his life with grace, love, and thoughtfulness. Diagnosed with synovial sarcoma in July, Sam and his family had to make many difficult decisions. Throughout it all they walked with faith, with love, and with each other. 

Treatment failing, they decided for quality of life over quantity - to live and love to the fullest.  They wrapped themselves in God's love,  surrounded themselves with family and friends, and did things that nourish their spirits. They accepted help with gratitude. They bore witness to each others' struggles to come to terms with the reality of one continuing on without the other. They said the things that needed to be said to each other, and had authentic conversations with loved ones as well. 

Sam packed his CaringBridge page with not just medical updates, but words of wisdom, "Wee lessons," and an amazing example of living life to the fullest while expecting death. He reminisced, joked, taught, encouraged, and shared his heart and soul with all. Sam considered it a blessing that he and those he loved had time to remember, together. 

Home
Elizabeth, Sam's wife, shared her faith, strength, vulnerability, and compassion as well as her deep love for her husband and family. It is her words that touched me most during this journey. Yesterday Elizabeth commented that it felt right to have Sam at home while his body was declining because she and Sam considered themselves at home wherever the other was -  and that the most difficult part of all of this was going to be when her home is gone, and all she's left with is a house. 

This morning Sam journeyed to Forever, to Peace, to God ... Home. 

My heart and prayers are with those who continue to celebrate Sam's life while learning to live with the void he left in theirs. May they wrap themselves in the comfort of God's love and in faith that one day we will all be Home together. 


Tuesday, November 13, 2012

Liberate Your Soul

What do you like the most about watching someone unwrap a gift you've given? The joy on their face? Their excitement over the gift? How absolutely cool you are for giving them something they desire? Giving gifts often feels better than receiving them. Giving gifts to people who just want to meet their basic needs feels even better and not only produces bigger, more emotional reactions, but has a much bigger impact, possibly changing lives. Not just the life of the recipient - your life as well. 

While reading through Black Friday ads or making lists of the stuff you hope to give to people during the holiday season, please consider giving the gift of love, of support, of security, of knowing someone cares, to someone in need ... in addition to, or instead of, your usual gift. 

I am blessed to be witness to two wonderful and powerful holiday giving programs this year: Mindful Village's Holiday Helpers Project and Momastery's Holiday Hands ministry. The essence of both of these is love

Mindful Village is a non-profit organization that strives to build a nurturing community for families and individuals who practice conscious, compassionate parenting and informed natural living choices. They help families in need in their community have food, fuel, and fun for the holidays by collecting gift cards to gas stations, grocery stores, and department stores and by purchasing gift cards through Paypal (donation@mindfulvillage.org) and monetary donations received via mail (3203 Autumn Chase, Ellington, CT 06029 ) to distribute to these families. Their Holiday Helpers Project is a simple, but effective way of providing families with peace of mind and a joyful heart for the holiday season. 

Momastery is a wonderful blog and a community of women who uplift each other in countless ways. The Holiday Hands ministry connects people in need with people who can help, and miracles happen. Angels swoop in, filling requests as simple as sending a get well card to as heart-wrenching as helping to pay for a funeral or a medical procedure. And all of this by Thanksgiving. And all of this because Love Wins (Monkee mantra ...don't know what a Monkee is? Visit Momastery!). 

Please give someone some holiday help this season...and may your generosity encourage your soul for the year to come. 

I have found that among its other benefits, giving liberates the soul of the giver.  ~Maya Angelou

Friday, November 9, 2012

Unexpected

It is the unexpected things in life that bless us. 

The other day, the predicted minor snowstorm unexpectedly dumped over eight inches of snow - much of it during my Remicade infusion. Needing a ride home from the hospital and not wanting my Dad to brave the elements, I called a cab. 

I knew I liked the driver with the first non-business words that came out of his mouth, "There should be a ban on discussing the election for at least forty-eight hours after the election!"-this in response to an editorial bit on the AM station he was tuned into to listen for weather and traffic reports. I wholeheartedly agreed.  Brian, the cab driver, and I started talking - about the weather, the crazy drivers, and eventually our families and our faith. He's Muslim. I'm Christian. We both pray multiple times a day and read our religious texts daily. We both meditate when we can. We both have five kids, our youngest, daughters, soon to turn four. We spoke of values, of human potential, of kindness, of differences, of sameness. 

As we approached my house, we thanked each other for the conversation, both of us feeling blessed for the surprisingly deep, yet brief dialogue. 

I have his card. Should I again need a ride home, I know who to call. Brian isn't just a cab driver, he's a blessing. 



Wednesday, November 7, 2012

Tough Decision

Living with Psoriatic Arthritis involves making many tough decisions. Decisions about medical treatments, mobility aids, and lifestyle changes are just a few. Today has brought another one of those decisions to the surface.

It starts with a certain set of rules that I live by. You see, there are rules pertaining to the watching of Winter holiday movies. The "Cardinal Rule of Winter Holiday Movies" in my household is that we do not start watching them until Thanksgiving night, when we watch "A Muppet Christmas Carol." You see, I'm a holiday movie addict. I do believe I have enough holiday movies in my possession to watch at least two holiday-related movies every day in December without running out. In addition, 41 holiday movies await their turn in my Netflix instant queue and more in my dvd queue. 

Now I find myself in a bit of a predicament. Today I have a Remicade infusion, which will result in a "Remicade hangover." I had set up my dvd queue to send me two family-friendly movies to watch with my kids upon my arrival home from the hospital. However, Netflix, in all its wisdom, decided to send me the 28th movie in my queue. It's a "Christmas" movie. Normally I'd be able to resist - I'd just send it back. But ... but it's a movie we haven't seen yet! And there's a nor'easter heading our way, threatening to dump a couple inches of snow this evening. And it would be such a waste to just send it back. Right? 

I guess I'll just have to give in and break my own holiday movie watching rule. It will be tough, but I think we'll survive. Perhaps I should make some hot chocolate and dig out the organic candy canes I have left over from last year... or would that be going too far? 

Tuesday, November 6, 2012

Caregiver


There is a member of my family who takes particularly good care of me. When I'm not feeling well, she hops into bed with me and massages whatever part of my body is feeling the worst. She curls up with me and comforts me. First thing in the morning she greets me and makes sure I take my time getting up, encouraging me to linger in bed just a little longer. She checks on me throughout the day, making sure I keep moving my aching joints and applying heat to the places that really need it. She encourages me to take breaks, to rest for a while. She seems to enjoy the time we spend together as much as I do. Her mere presence is comforting; her love, obvious; her patience, tremendous; the joy she brings to my life, priceless. Lola is one of the best caregivers I've been blessed with. I'm incredibly glad we adopted her!



Friday, November 2, 2012

You Can't Be a Good Parent

In a wheelchair at the store, I was chatting with someone while waiting in line when one of the store employees asked me where my kids were. I responded that they were home working on a homeschool project. The person with whom I was chatting asked how many kids I have. I answered, "Five." She seemed disgusted. "Five children? And you homeschool them? Why, you can't even walk and were just saying your hands aren't working well these days either! You can't possibly be a good parent, nevermind teach all those kids!" 

Awesome store employee to the rescue! "Excuse me, ma'am, but you should meet her kids before you say that. They're intelligent, well-behaved, and are the kindest, most helpful kids I've ever met."

I thanked the employee and said to the woman that I had no idea that how well a person's body functions had any impact on the quality of parenting or teaching the person could do - and asked her to please not let Stephen Hawking, his kids or his students in on that presumption. She gave me a confused look, paid for her items, and left.

This, as well as a couple conversations on a psoriatic arthritis message board I moderate got me thinking. What impact does my disability have on my parenting and my kids' education? What are my kids learning because of my disability that they might not otherwise learn, or at least not learn as well?

My children learn empathy and compassion, as well as the importance of self-care, by not only watching me live with my current limitations, but thriving with them.

In talking to them about all the things I'd love to be doing with them, about my frustration over not being able to do those things with them, and brainstorming together what we CAN do to live our lives to the fullest they are learning a lot about navigating through life and overcoming obstacles.

In seeing me go from being fairly healthy and "normal" to using canes or a wheelchair, my children are learning that someone's outward appearance, including whatever devices they use to get themselves around, have nothing to do with who that person is.

My children are learning to look at life not only through their own eyes, but through the eyes of someone in a wheelchair, someone with chronic pain, someone with mobility issues, someone with chronic exhaustion. They are learning not to assume things about people - because some people who look healthy don't feel at all healthy.

The lesson that this is a world full of give and take, that life isn't fair, that bad things happen to good people - and that all that is ok, is not lost on them. They are learning how to find balance in a give-and-take world, how to accept what life throws at them when it seems unfair, and that most things that may seem bad at first glance can be blessings if you let them.

And yes, they are learning standard school subjects, and more. They are learning math through playing games, cooking, and grocery shopping. They learn to read and write at their own pace, reading what they love, writing what they conjure in their minds, and following their passions. They're learning history through journals and diaries, museums and historical sites, and through talking with people who lived it. They learn science through hypothesizing, experimenting, researching, feeling, seeing, and doing. They also learn computer programming, theater, Latin, art, money managing, Tai Chi, hooping, sewing, and so much more. 



They are learning that people matter much more than things. That spending time with someone is infinitely better than spending money on them. That friendship is just as much about what you give to the relationship as what you get from it. That a sense of humor is priceless and can make all the difference between a good day and a bad day. That when you commit to doing something, you see it through. That asking for help is ok. That friends come in all shapes, colors, sizes, ages, and abilities.

Somehow I think the woman at the store could benefit from hanging out with my kids for a day or two - she seems to have a lot to learn.


Thursday, November 1, 2012

Head-On Collision

What it sometimes feels like!
I lay still, my mind consumed by pain. Taking stock of the situation, I realize how dire my predicament is. My left arm feels broken. Crushing pain in my left leg and pelvis prove me trapped here with little hope of moving in such a way as to get relief from the pain. Laying still, I concentrate on breathing, but that, too, is painful and difficult. My circumstances are bleak. I may never get to sleep.

I feel as if I've just been in a head-on collision and the pain will not relent enough to allow me to drift off. Even with a double dose of pain meds, a heating pad on my lower back, and with my left arm elevated, my psoriatic arthritis is winning its battle over my body and my ability to sleep. Even extreme exhaustion isn't helping the situation. Pain-induced insomnia reigns supreme. 

Hours later, my husband's alarm sounds. I still have not slept and my pain has only increased. He applies more heat to my back, gives me more medicine, and I'm able to drift off for twenty minutes. Bringing me coffee before he leaves for work, a look of concern crosses his face.Assuring him I'll survive, I manage to sit up to sip my coffee, knowing that if I allow myself to sleep just a bit more, I'll never be able to get up in time for the morning's activities. I'll nap later - hopefully not at church during worship!