Saturday, August 6, 2016

Kindred Spirits.

“Kindred spirits are not so scarce as I used to think. It's splendid to find out there are so many of them in the world.” ~ Anne of Green Gables

Siblings with the one and only Don Meyer! 

Dearest Readers,

It seems I've been bitten by the writing blog after those long months away. So, hello, again!

If you have ever read "Anne of Green Gables," then you're sure to be familiar with those words that describe friendships so perfectly--'kindred spirit.' She also uses 'bosom friend,' which I loved to use after I first read the books as a 10, 11, 12 year old, but my mom quickly told me that those words might not be appropriate in this century. I am glad she did, though secretly I continue to use them in my journal and in my heart.

I tend to be of the personality type that squeals when I find a kindred spirit friend. It's easy to know if they really are a kindred spirit, then, by whether or not that squeal unsettles them.

These past two days were sweet, sweet days filled with kindred spirits.

During Lent this year, I decided to follow  Pope Francis's  call to give up indifference. I had decided to observe Lent because so much of our Spanish studies include Catholicism, and the tradition was one I really admired. Of course I adore the Argentine Pope, and so when I read his words about how so many people give up things with ulterior motives, I was immediately convicted. I had planned to give up bread, not just because it's my favorite food group and would definitely be a struggle, but because I also knew it would have positive effects for my body. He said indifference is the real problem with our world today, and I couldn't agree more. It was an incredible season for me, and I learned so much I could write several blog posts about it.

I realized that I was being indifferent to the special needs siblings like myself. It wasn't a hateful indifference, it was simply a "It's hard for me to think of your struggles and to see myself in them so I simply don't" kind of indifference. And, to be honest, I would rather focus on the disabled community instead.

I was shunning indifference from my life, though, so I sent Don Meyer, the director of the Sibling Support Project, an email. As had happened the entire Lenten season, God surprised me by how obviously He had ordained for this to happen. Don had just put dates on the calendar for a sibshop facilitator training in Jackson, and within that day I was added as the very first attendee. Crazy, right?

That training was this Thursday and Friday, and oh my goodness, what an incredible two days they were.

It was the first time all of us adult sibs had gotten to meet and know other siblings like us--true kindred spirits. We sat side by side on a panel and faced a room full of service providers and parents whose passion is caring for those with disabilities, but who are realizing the importance of those siblings, too. As we answered those questions and found our answers mirroring one another, I began to understand what a unique community this is. Even though the disabilities our families face varied, we are all linked by not just the struggles, but the undying love we have not just for our families and siblings, but for everyone with a disability. It was an incredible thing.

We've grown up in worlds where our siblings have countless therapists, doctors, teachers, etc. dedicated to thinking about them and worrying about them and caring about them--and though our siblings would probably say they would have rather not had all those people surrounding them, it sends a very clear message that, "You matter." To sit in that room, then, and to hear Don repeatedly talk about how much he LOVES siblings, felt like being told over and over again, "You matter. All of you matter."

It's true; everyone in this world matters. The siblings I met this week and I already have plans set in place to begin discussing starting Sibshops in the Jackson area, and to continue being present in one another's lives. I am truly thankful to have found these dear kindred spirits, and can't wait to bring together kids in this area so they can find their own. What a gift.

I hope you have your own kindred spirits in your life that reaffirm you. You matter very much.

Your blogger,

I love Cate's joyful smile at the Sibshop demonstration! 

Tuesday, August 2, 2016

On Writer's Block.

Dearest Readers,

I didn't mean to take such a long break from blogging. I've sat down at the computer several times this summer intent to publish something. I really wanted to share with you about my freshman year, but something always stopped me. Something ugly and intimidating and gross.

Writer's block.

I once read an author say she didn't believe in writer's block, and to a certain extent I don't think I do, either. I have names for whatever has stopped me from writing, and they're called: fear, the feeling of inadequacy, smallness, doubt, and a host of others.

It wouldn't be too much of a problem since this blog has maybe five regular readers. Except I'm speaking at a conference in TX later this month, standing on a stage alone sharing my family's story. This is requiring me to write, regardless of writer's block and feelings of inadequacy.

My first semester, I had a fabulous English teacher. I fairly ran out of her class the first day she gave us a big assignment: to write a paper on something or someone new to us at MC. By that night I had chosen a subject and written all of my interview questions and created a rough outline. I love telling people's stories. When it came time to tell a story of our own, however, and I had to talk about move-in day and the week of Cate's hospitalization that prefaced it, I was stopped dead in my tracks with--you guessed it--writer's block.

I don't really understand it. I believe deeply in my soul that everyone's story matters. I would like to climb on top of a tower and shout to every person in the world that they have a story and it deserves to be told.  I would throw pencils and pens at them and urge them to document the moments of their lives, because they are unique to them and beautiful and the world should know about those moments.

But what a hypocrite I am, because when it comes time for me to write the moments of my own life, my ears can only hear, "You don't even have a story. These words don't matter. The world has better things to think about." 

My dear family and sweet friends are quick to assure me these words are lies--they kindly encourage my heart, and their encouragement gets me through another paragraph or so.

But then I had a video conference with two other women headed to this conference. At first I was silent, struck again with how little I have to contribute. Soon, though, I forced myself to speak and found myself laughing over the strange comments families like ours often get. It felt nice. Until one of them asked me, "So, Claire, do you use a chair?" and I realized with a sickening drop in my stomach that she assumed I had CP. Awkward apologies and explanations followed. Just a single comment, and it was enough to bring that writer's block back so forcefully I just want to cry as I stare at the words I have written and think about the many I still need to fit into my time-slot.

When I struggled so much on that English assignment, I started writing about something that makes me smile (salsa dancing), and it shoved that great big block out of the way and somehow became the paper (seriously I wrote about salsa dancing, ha). While I don't think I'll be printing this out and sharing it at the conference, I hoped it would do the same. As I wrote, I received an email from one of the women from the video call. I had written to apologize, again, over the confusion of whether or not I had CP, and to give her permission to take me off this presentation committee since it doesn't really make sense for someone without CP to stand up there. She actually told me she knew I didn't have CP and wanted a sibling's perspective added. That email, coupled with the words that now cover this page, have successfully shoved that great ugly block out of the way.

I think next time I go four months without blogging I'm just going to slap myself with a reminder to get over myself, haha.

Thank you, readers, for faithfully reminding me that my story matters when I sometimes forget. You show me that every time you click on this little blog of mine, and you have no idea how much that means to me. Thank you.

Your Blogger,

P.S. you should write your story down no matter how hard it is because it's important that the world hear it.

Sunday, March 27, 2016

When Healing Doesn't Come, Jesus' LOVE Still Rains Down

Dearest Readers,

This morning my family and I sat together in church. It was a lovely start to our Easter Sunday. Until about halfway through the sermon.

The message revolved around specific examples of healing from throughout the church. Each story was followed by passionate "Amens" and clapping, which spurred him on to the next story of miraculous healing and prayers answered. After the second one, he took a moment to acknowledge the pain anyone who has dealt with loss in the past year might be feeling, but he only stayed there for a second before continuing to tell us the story of a baby who was deprived of oxygen at birth. The doctors thought he was probably dead, and the father (a doctor) stood beside his wife and fervently prayed while assuring her everything was ok. The next thing I knew a picture of a beautiful young boy was flashed on the screen and the preacher paused dramatically before he declared how powerful this couple's prayers were because this boy was perfectly healthy.

I had been uncomfortable the entire time, but this time my eyes filled with tears. I looked around at the thousands of people in the sanctuary; I looked at the videographer beside me and wondered how many others were hearing this message across the state. And of those thousands of people, how many of them will experience healing on this earth?

I was sitting beside my parents, who were in an operating room similar to the one of that couple's nineteen years ago. My parents were praying then, too, and yet my brothers didn't get healing. They have brain damage that radically changed the course of my parents' lives.

I'd like to speak to the ones who haven't experienced healing--the ones who were only spoken to for a moment this morning. I would like you to know that you are worth much more than that one moment. I would also like you to know that God's power isn't only evident in healing. In fact, I would say His power is most evident in suffering.

Jesus could have said the word and God would have sent twelve legions of angels to rescue him from the cruel fate of the crucifixion (Matthew 26:53). Just one word, and He could have avoided the flogging, the nailing, and the separation from God. It would have been so easy. Yet He stayed and suffered for our salvation.

I don't have any answers for why God heals some on earth and chooses to withhold healing until Heaven for others. It hurts my heart and I am so sorry. The only thing I know for sure, though, is that God loves us an incredible amount, and that love is evidenced by the cross. I know He doesn't watch His people suffer without suffering alongside us.

Most importantly, I know that just because He withholds healing DOES NOT mean He has abandoned you. My parents might not have seen healing for my brothers, but God has shown them He is still here in the form of so many people--their first Occupational Therapist who taught my mom the boys' disability didn't define them, the teacher who taught Benjamin he could do so much in spite of his CP, the friends who built a ramp so we could get into their home.

A key thing in that list are people. I think God leaves it to us, in many cases, to carry His hope. My friend at MC coined the term "fight-alongsiders." I love that word because it implies you are in the fight just as much as the person you're beside. Let's be fight-alongsiders with the ones who won't get healing on earth, even when it's sad and hard and nothing like we thought life would be. Have you ever wondered how people have hope even in the most hopeless of situations? It's carried to them by you, friends.

The God who was powerful enough to raise Jesus from the grave is the same God who lives inside us and gives us strength to keep going even when it feels like our prayers aren't being answered. These are the things I would have liked to tell those thousands of people today. Thank you for reading. It is a privilege to be one of your fight-alongsiders.

Your Blogger,

Friday, January 8, 2016

. The Great Christmas Reading List!

Dearest Readers,

It's to the point where my blog posts are so sporadic I can't even begin with an apology anymore. So without further ado:

Christmas break has been oh so lovely. We have lived in Mississippi for six months now, and celebrated with a beautiful getaway my parents surprised us with. It was perfect--we never got a chance to catch our breaths this summer with moving and multiple hospitalizations, so took this trip to catch up on time together. A hotel has always been my favorite place to be, even if we just sit on the bed eating room service and watching movies.

With the travels, I got a chance to catch up on my reading. It was pure bliss! I feel like I keep using those impossibly upbeat Anne of Green Gables adjectives, but y'all--I don't know that I have ever enjoyed Christmas break more. So excuse the gushiness.

Book club was one of my favorite parts of elementary school. We had a precious librarian who gave up her lunch hour to create a bubble of security and enlightenment for some awkward preteens. I learned how to read outside of my comfort zone and learned that it's still okay to love someone who doesn't finish the assigned reading ;). She taught me how to recommend books and how to read well. Her book recommendations were magical--you couldn't refuse a book once she detailed it to you.

So here I sit, your makeshift librarian, anxious to share the treasures I have found over this Christmas break. Please leave a comment with recommendations and favorites of your own!

Book number one:

Come Rain or Come Shine by Jan Karon

The latest installment in the dearly loved Mitford series, my mom and I made a whole lunch date in order to purchase it. In September. Shameful, I know. I read it off and on all semester until I finally got to finish it at the beginning of break. (I had to leave it at home in the end of the semester because the temptation to read it was too great) If you have never stepped into the world of Mitford, you are missing out. It's a delightful little mountainside village in North Carolina, and you follow it through the eyes of its precious Episcopalian priest, Father Tim. By the end of the first page of the first book you'll be in love with Mitford and those who live there. This book, however, was a bit of a disappointment. It could have been the impossibly high expectations I set for it, but my mom and I agreed that it felt rushed. Many big life events were rushed by in a little flashback, which is not the way these books normally feel. So be wary, Mitford fans, but know it's worth a read anyway. I mean, of course it is--who doesn't want to watch Mitford's dear Dooley marry the love of his life??

The Forgotten Garden by Kate Morton

Oh, this book. Definitely my favorite of my Christmas reads, this book was magical and renewing. You'll follow Nell on her journey to discover who she really is. Her history was lost in time when she was found in an Australian boatyard at four years old with nothing but a small suitcase to her name, which she was unable to remember. Each chapter changes perspectives from Nell, her mother in the early 1900's, and her granddaughter, still searching for her truth, in the early 2000's. It is a delightful read, with enough mystery to keep you intrigued and enough history to keep it insightful. Fairy tale magic is sprinkled throughout, and this masterpiece will leave you begging for a sequel.

Handle with Care by Jodi Picoult

I've only read two books by Jodi Picoult, and both are set in the world of medical families. After I sobbed my way through My Sister's Keeper you'd think I would have learned, but she understands special needs families in such an intimate way that I'm drawn to those books and fascinated by how completely she understands her subjects. This book is all about Willow, a brilliant and beautiful little girl who has Osteogenesis Imperfecta (Brittle Bone Disease). Her family adores her, but the strain of her disability has made her parents desperate. They start a wrongful birth lawsuit to try to offset the heavy financial burden, but at what cost to their family? Willow begins to doubt her self-worth and their other daughter feels invisible and begins to take out this pain on herself. As they try to give Willow a better life their own lives begin crumbling. This book hurt. It felt too real. It wasn't so painful I couldn't read it, though; I picked it up just to see if it was worth packing, and I didn't put it down again until it was finished and cried over and across the Florida state line.

Our Souls at Night by Kent Haruf

My second favorite book of break, and ranking with my most favorite books of all time. There is a lonely widow. A lonely widower. She calls him and asks him to sleep beside her at night, to talk with her in the dark, to be a companion. It is the simplest of love stories, not really about romance at all, but rather the craving in all of us to never be alone. My heart has been heavily pondering the plight of the lonely lately, probably because I experienced loneliness in entirely new ways in the past semester. This book demands reading--I believe it will soften your heart toward the lonely and give you the courage to love a little harder, and a lot braver.

Scarlet Feather by Maeve Binchy

This book was meant to be my last book of the summer. I began it with two weeks to read it, but then my sister was hospitalized. And then school started, and it sat on my bookshelf for a couple of months before I opened it. When I did a sweet letter from my mom fell out, and I cried a little realizing how long this book has been patiently waiting on me while my entire life shifted around it. With only two days left of break, I've only read a few pages, but that's okay with me. I've decided to make time for reading this semester. I almost lost my sanity in the past few months, spending every waking moment on biology. Even if it's one page a night, this book is worth the wait. Maeve Binchy always is.

I sincerely hope you pick up one of these books. If you could only choose one, I absolutely recommend Our Souls at Night. It is a brief read and so, so worth it.

Thank you for reading. I consider you a friend.

Your Blogger,