Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
E.D.

My last post was written on one of the most difficult nights of my life, as I was helpless as my mother faught for her life following emergency surgery. For six long days she was on life support and all I could do was hold her hand and be her voice to make sure she got the care she needed and the dignity she deserved. For seven more days she required high level medical care, and I spent every single day at the hospital with her (minus two when she was on life support and I was sick). When the doctors wanted to send her to a nursing facility in the area to recover not only did Mom refuse but I politely informed them that they could do so only over my dead body and wheelchair thrown in front of the vehicle. So Mom came home with "skilled" (oh the joke!!!) home nursing care, physical therapy, and a nursing assistant. Before she left the hospital I learned how to do everything the nurses were doing for her, things I never could have imagined being able to do but love speaks another language and God provides strength enough for what you face. Its a good thing too because that "skilled" nurse was only good for providing the medical supplies we needed. It is now seven weeks later and it has been a journey of faith. Faith and hope have been our sustenance, and a wicked sense of humor that allows us to laugh at even the "tragedies" in life. God broke through Mom's stubbornness to allow me to call 911 just in time - another 30 or 60 minutes might have swung the outcome to fatal. God lined up the best surgeon, the one who uses the most modern and aggressive infection fighting techniques. God prevented her from going septic. God prevented pneumonia or blood clots as she has a clotting disorder and laying unmoving is a huge risk factor. God knit her back together from the inside out. God guided her through a process where 60% of patients die within 30 days of surgery. We are blessed. At times one or the other of us gets weary, frustrated, angry, etc. But then we remember all of the blessings, we remember how faith has fortified us and hope sustained us.
This Christmas we were unable to enter into the material aspects of the holidays. No cards were sent, no presents purchased. We did put up the two trees - a 4 foot tree and a table top 18" tree- and decorated them because Mom loves the lights and we both love the memories of the ornaments. By not geting swept up in the commercialism of this season we were able to really see all of the presents we have received - the love of family and friends, the gift of redemption, grace, mercy, hope, faith, life, memories, health, all different kinds of healing, joy, and an abundance of blessings.
My own medical issues and needs were put to one side as much as possible as I have been engaged in assisting with Mom's recovery. She is still weak, still healing. And she will undergo another surgery sometime in 6-9 months. I ran on pure adrenaline and some adjustments to my medications for far longer than I imagined. The adrenaline is now gone and I am a disaster, dealing with the effects of now and the effects of weeks ago and untended medical issues. As things get stable, I will be getting the medical services I need and trying to regain some ground I have lost. Another concern, although I am choosing to have faith in God to provide (prayers are always welcome), is that my COBRA insurance runs out the end of February. My Social Security appeal is at court level but can take 9-18 months to be determined which rules out medicare. The medicaid program I qualify for has no funding. I can afford to purchase a single person policy but there is no pharmacy coverage and you are limited to 2 dr visits per year. I do not qualify for the Obamacare Pre-existing condition insurance because I have had insurance, and you must be without insurance for 6 months prior to qualifying. I can not go 6 months without insurance. I can not go a month without prescription coverage without a high risk of mortality. Thankfully God is a God of impossibilities and moving mountains.
Now that I have a bit more down time I will try to keep my journal updated and write more. I hope everyone had a Christmas full of the gifts that are too precious to be bought, and enters into a New Year that provides them with enough of everything they need but never so much as they forget to appreciate it!

We have a long standing family tradition of wrapping paper fights at our family Christmas get together. It was in existence as far back as I can remember. We have done our best to teach the next generation, and it seems we have taught them well indeed. The littlest family member took the opening shot this year!

Dear Santa Claus, Kris Kringle, Christkindl, St. Nicholas, Sinterklaas, Mikulas, San Nicolo, Pierre Noel, Father Christmas,

I am quite certain that I am trending more towards that naughty list than the nice list, especially if swearing and sarcasm are taken into consideration, but I decided to take my chances and write you my grown up Christmas list. If I have been too naughty, instead of bringing coal could you please deliver the equivalent amount in barrels of crude oil - they trade better on the open market. If I have tipped over into the nice category, below are some suggestions of things that would be really great to receive this year although they may be a little challenging to wrap up and top with a bow, but that is why you have the Elves working in your sweatshops year round. Don't worry, there are no labor laws for Elves yet so you are in the clear.

1) I would like a hippopotamous for Christmas. Preferably a baby one named Ethel. 
2) I would like a can of Stupid-B-Gone to be used in situations where ignorance can not be corrected by education.
3) I would like snow and ice tires for my wheelchair. You know about snow. Now try steering on that crud with thin wheelchair wheels, propelled by metal push rims in subzero windchills.
4) I would like for my buddies and kids with special needs to be more than tolerated in society but to be accepted and appreciated. I tolerate lima beans when I am served them, but that certainly is different than accepting an offer of a new food for dinner and appreciating a homemade three layer birthday cake with gorgeous decorations. 
4. I would like my body weight in chocolate. All organic and grown by regional farmers, in an assortment of flavors including dark chocolate, milk chocolate, white chocolate, and truffles. 
5. I would like for money and health care and food to be more equally distributed in this world so that no one dies because of hunger or a preventable and easily treated disease. No child should go to bed hungry, wondering if and when they will eat again and where there is such a thing as clean water of what a home is.
6. I would like a disco light for underneath my wheelchair because if people are going to stare I want to rock it out. 
7. I would like an end to killing one another in the name of God. If we all claim our God is a God of peace and love, how can we then kill in His name?
8. I would like to have enough of everything, but never so much that I forget to appreciate all that I have. Enough love, enough joy, enough peace, enough hope, enough grace, enough mercy, enough providence, enough success, enough trials, enough learning, enough friendship, enough miracles, enough laughter, enough memories. I would like to never take forgranted all that I have been given.
9. I would like enough for all of my loved ones, my friends and family, those who share this journey with me and provide me with support and laughter and encouragement. 
10. I would like a diagnosis if you can find one of those laying around.


Thank you!
Love,
Bethany

In an old cardboard box that replaced the shoe box used up until last year when it finally wore through the bottom I keep one of my familie's most precious Christmas traditions. It contains the assorted pieces of a nativity scene that has been my responsibility to arrange for display and tend to since I was about three or four years old. I took this responsibility very seriously as a child and often spent hours arranging, then rearranging, then acting out the scene before rearranging yet again the staging of the nativity. But this cardboard box nativity is special. It is absolutely, undeniably, certifiably one of a kind. It is not so much one set as the accumulated pieces and parts of numerous old sets combined together as parts and pieces went missing. So Mary and Joseph are from one old, handcrafted set but Baby Jesus had to be replaced last year after suffering a severe compound fracture to his arm and some skull lacerations when making a dive out of the manger. We have four wisemen instead of the traditional three, because those are how many are left over from all of the sets and I can not choose one to leave out. The wise men are in various scale sizes, making one look like he has a serious growth hormone problem and another as if he is from the same tribe as Goliath. I figure my wise men bring Gold, Frankensence, Myrrh, and the one thing every new parent needs - free diapers! Then there is one shepherd with a sheep and a free standing sheep of a slightly different shade of white paint...he's been rolling around in the mud. For the ambiance there is a single cow remaining and a single donkey (well, we call it a donkey but it could be a horse I guess...who would invite an Ass to the birth of Jesus?). The angel is missing the gold from her wings and her halo is chipped and dinged. Finally, there is a so-not-proportional bright green wooden pine tree with snow that I made when I was about eight years old at Church and insisted must join in the merriment. My nativity has some character to it, it has been around the block and been knocked around by life, it has been pieced together from pieces and parts that otherwise would have been thrown away, and it has been given a place of great honor every year. I love the imperfections and would have no idea how to set up a perfect, everything matches, nothing is damaged nativity. Just like I love the imperfections in my life and would have no idea how to live an absolutely perfect, unscarred, unmarred, undamaged life. In both the nativity and my life, the quirks, the marks from wear and love and from little hands holding tight, the collection of pieces that failed to fit in  and so were supposed to be discarded, the journeys from home to home, the ragtag menagerie is beautiful in my eyes. Creating that magical scene is something I look forward to every year, especially if I get ahold of some spray on snow, glitter, and straw/hay! Although this year I hope we can make it through the season without any serious trama, although I do have that spare wise man who can step in as an understudy.

Christmas is usually one of my favorite times of year, with the glittering lights and the decorations and the excitement about giving to others and the celebration of Christ's birth. This year, not so much. I am definitely not feeling the Christmas Spirit. Last year I was all about everything holiday because the year before I had been so sick that I missed out on the entire holiday season - every holiday from Halloween to Valentine's day. This year I am at a different point in dealing with the massive changes in my life - if we were to refer to the Kubler Ross stages of grieving I am alternating between angry and depressed with days of acceptance. I really want my old life back - if that could arrive under my Christmas tree neatly wrapped in a package and tied with a bow I would be the happiest person on Earth come Christmas morning. At first I tried to force myself to go through the motions and engage in the traditions and make myself feel happy whether I wanted to or not. Yeah, that went as well as it sounds. So now I have given myself permission to feel however I feel and not feel ashamed or guilty about it. There will be no homemade christmas cards this year, and it is debatable whether I will send out any Christmas cards. I have not listened to a single Christmas Carol, other than those playing in stores, and I may choose to keep it that way or I may rock out to Sugarland's Gold and Green. I am putting up a small Christmas tree this year but it will be a low jey event and that will be about the extent of the decorations. It is going to be a low key, low pressure, take it as it comes, celebrate the things that really matter Christmas. And this year I am okay with that.

What you do speaks so loud that I cannot hear what you say.
  - Ralph Waldo Emerson

I will be the first to admit that it is incredibly easy to become entangled in the mob scene of pop-culture Christmas and the frantic energy to buy love, to give love in shiny packages and dollar signs, and to measure worth and value in things. After all, society inundates us with the message that only perfect is acceptable, only more is even worth considering, and only money spent speaks of love.

Last Christmas season I had an in-depth, advanced level course in the fact that all of the superficial things that receive the publicity and glamor of the holidays are meaningless. I spent 11 days from December 12 through the evening of December 23 inpatient as doctors tried and failed to determine a diagnosis regarding the progressive muscle weakness and inability to tolerate food (and go figure, one year later the second verse is an echo of the first). Yet even though I was 500+ miles from all of my biological family, I was not alone. Just as I had not been alone when I was first hospitalized in October, or any of the time in between. God has blessed me with a second family in Virginia, with incredible friends who constantly amaze me with their love. On Christmas Day last year I somehow managed to get myself dressed up in a dress I had bought two months earlier for the Christmas I planned to spend in Michigan and laid on the couch as they included me in their Christmas festivities. Their little blue eyed boy, my beautiful mystery of a student who became my beautiful gift of so much more, sat on my lap and opened gifts with me. I had a family and love, and I learned that actions tell more about a person than words ever could.

This Christmas I miss my dear second family in Virginia, but was blessed to be with my family in Michigan. On Saturday my mother's family all gathered for the first time in two years. I was nervous, because it was the first time any of them would be interacting with me since I had gained wheels and I was afraid I would be treated differently because of it. More than anything, I just wanted to be seen as me. I had a wonderful time and for the most part I was accepted with grace and love. So much has changed in the dynamics of our family since I have grown up, and I treasure my family more than ever. There were a few issues where it was clear through actions that all of the words in the world were meaningless, but I have decided that is neither my fault nor my flaw.

I loved watching the little ones run around, open their presents, and just be kids running wild in celebration. Words spoken, and unspoken but communicated through actions, let me know that I am still very much a part of the family. Our annual tradition of the wrapping paper fight was especially well done this year, with some strategy and team work involved.

More than the gifts, or the lights on the tree, for me it was about the Christmas presence - truly being there, truly choosing to offer your heart to one another, and loving beyond any differences. The presence of the gift of peace and hope and forgiveness and love.

This past weekend was the family Christmas activities for my father's family. A tradition of sorts has been established that each year the families gather at a hotel that has a swimming pool (easy entertainment for the kids grown and not) for the weekend. We have a big family meal on one day and then a smaller get together the other day for presents and such. This year the chosen hotel was just one town away from where I live, so the original plan was for me to spend the day with everyone and come back home at night. However, my stepsister's husband had to work and so she invited me to join her and her kids in their hotel room. It was a wonderful weekend where my braces and wheelchair and crutches were insignificant, where no one treated me any different and where I could just be a part of a family celebration. It was just assumed that I would be included rather than looking at obstacles and thinking it would be too much work. I have not always been close to my stepsister and brother, or to my stepmom, especially when I was growing up but they have genuinely formed a family that cares about me and accepts me and is protective of me without limiting me and that just gets that in spite of all the medical stuff I am still Bethany. I thoroughly enjoyed being able to swim so much, as in water I can move my muscles so much easier than I can in any other situation. I do cheat and use a flotation belt because I struggle to maintain balance and to hold my legs up when swimming, but the difference in motion is amazing. In the pool I could participate in all of the fooling around and playing without struggling with my wheelchair. I was able to play with my nieces in an environment that was without barriers. On Saturday evening, the spa was cooler than usual so I was able to safely sit in the warm water and place my feet in front of one of the jets for what was an incredible "massage" that helped to loosen up my muscles.
Two funny stories. The first involves being completely and inappropriately dressed for an occasion. At the hotel, the swimming pool was directly next to a large conference room (actually it connected through sliding glass doors and could be opened up so the pool and room were connected). As we were swimming Saturday morning, complete with children splashing and jumping into the pool and shouting and being kids (and some adult males being kids with them), we discovered that a funeral memorial service was being held in that room directly next door. Now, not only was it bad planning to place a somber event next to the pool the weekend before Christmas but the only way from the pool back to our room was either to go up a flight of stairs and across the upper floor then down a flight of stairs (um, apparently the wheelchair was not a clue to the hotel staff that this plan was not a reasonable option) or to go right through the buffet area for the funeral. So not only did we have to parade soaking wet, in flipflops or little bare feet through the somber set up but my swimsuit cover up? A nice wrap with brightly colored skulls and cross bones all over it. I have now officially crashed a funeral in my swimsuit and a skull and cross bone cover-up.
Second story requires some background knowledge. Last week my stepsister graduated from nursing school. Awesome! My dad and stepmom obviously went out to her graduation. I forgot what day her graduation was and so when I had a toilet emergency on that day I called them to see if they happened to have a plunger I could borrow. As soon as I called, I realized where they were and that from 3 hours away they were not going to be able to help me out. They actually did help me through a call to a friend who lives in the same apartment complex who hunted down a plunger for me, and all it cost me was some embarrassment. So yesterday while we were opening presents my dad and stepmom announced that they had a very special present for me. With a large red and green bow on top and red ribbon curling around it I was presented with a plunger complete with a tag reading "In Case of Emergency". I had to laugh, and everyone who knew the saga laughed along with me. So now when I am asked what I got for Christmas I can proudly say "a plunger!". :)
Tomorrow I am going over to my Mom's to spend Christmas with her and then on Saturday we are going to my Aunt's house for Christmas with my Mom's family. I am more nervous about that event because no one from her family has seen me or interacted with me in person since I became sick with whatever this dystonia/progressive spastic paraparesis/unknown syndrome is. I just want people to treat me like me and not be uncomfortable or all weird because of the chair and the changes in my life. But I am so excited to be celebrating Christmas with far greater health than last year, and not desperately ill and an 11 day inpatient stay right up until late on December 23. And I can even eat all of the Holiday foods this year too!! What a difference a year makes!! I am so blessed!