Monday, January 16, 2017

Alive


I sit in my bed this blustery January evening (Happy Birthday, Natalie Rose!), and feel a deeply-rooted awakening in a long-dead seed.  The 2.5 years of life that has passed since my last post has been laughably difficult.  I mean, really and truly Job-level suffering of a long cursed family, as my dearest love likes to say to make me feel better.  

I have lived thus far as a vulnerable, open, deeply feeling person who quickly hands over her heart and meets in the trenches of another's reality.   Jumping in with both feet has colored my life in ways beyond imagining, opening me to joys not found without vulnerable encounter with stranger and known alike.  It's a beautiful/exhausting way of living, bearing fruit both life-giving and dangerous. The life-giving bits should be fairly obvious:  never meeting a stranger, the exhilaration of a spontaneous adventure, being moved by a particularly beautiful work of art, music, sunset, cup of coffee.  The dangerous parts are harder to decipher, particularly to oneself:  taking on too much of the suffering around us, co-dependency, comparison, constant indecisiveness, FOMO, 


As days, months, years go by, the obstacles have tempered and refined my wild heart, giving it permission to run free within healthy boundaries and self-care.  My awesomtastic counselor talks of God's pruning work, trimming and bending us so that we might grow aright.  Pruning work is really.  not.  fun.  But, it's the only way in a world that would have us run over with bramble and thorn. (By the way, people, counselling is one of the BEST gifts you can give yourself!!  45 minutes at a time dedicated to getting to the bottom of things, problem-solving, emotional sustenance.  Take the time to date around, and when you find a good one, stick with them!)

Now is not the time for a litany of suffering, though that may come later.  I just write to remind myself I am alive.  Dark winter days invite delicious hibernation, but I must not get lost in it.  I find that the comfort of solitude is great, inviting introspection that must also be balanced with impromptu movie afternoon, or hours around a cozy fire with a soul friend. (Em, here's looking at you and our hygge-fest).  It's the hide-but-don't hide introverted extrovert in me that loves this time of year.

............................................................................................................

Because I write now as like a diary, expecting my words to be read but a few dear souls, I'm going to lay things out.

Things are changing.

Like humongo crazy long-awaited change.

It's hard, there's some serious grieving, but underneath it all:  a tiny ember of hope, a hope that has endured beyond understanding.

There are people in my life who don't understand, and who don't care to understand, what I'm going to share.  Some will read this and think I'm only focusing on the hard, the ugly, the painful.  But the fact that I am ALIVE is in itself a feat.  And, bless your dear heart for the skeptics out there, ain't nobody got time (or energy) to deal with haters, so move along mon cheri.   

    
Nothing like vintage GIF.  oxymoronic though it may be.

The last time I remember a day without debilitating pain was before I had mono at 16 years old.  Even then, I'd have the consistent knee and ankle pain, but after mono, I've walked almost 2 decades with unseen and disabling pain.  I wake up feeling as if my bones aren't in the right place.  One misstep, and my left hip audibly pops and sits awry for days. Stomach issues, migraines, endocrine funk, fertility and uterine puzzles, hives, slipping rib syndrome, PCOS, hypothyroidism, neuropothy, black-outs, tachycardia, temperature regulation, costochondritis,  anxiety, depression, pregnancy loss.

Sounds like I'm a hypochondriac, huh?

Unfortunately for so many, this is often the diagnosis, along with fibromyalgia, an umbrella explanation for unexplained constant pain. 

I've spent years slogging through cement, pretending like my body doesn't feel like I've been on the rack, smooshed back together and then on the rack again.

I've blamed my obesity for the nauseating pain, hating myself more and more.

I've questioned my reality, wondering if I truly was crazy.

I've cried---oh how I've cried---when trying to explain to loved ones who just don't believe me, who think I'm lazy or just making excuses.

Only by unfailing support of my husband who has never doubted me even when I doubted myself, and the incredible competency and brilliance of my doctor have I finally found an explanation, 

I have Ehlers-Danlos Syndrome, 
Postural Orthostatic Tachycardia Syndrome (POTS), and
 Mass Cell Activation Syndrome.

ehlers-danlos-syndrome-causes.png (420×294)



wpid-1655924_284533608363564_239963170_n1.jpg (960×960)




Postural-Orthostatic-Tachycardia-Syndrome.jpg (720×404)




symptomsofmastcell.png (685×306)


Yes, it's a mouthful.  

Yes, they are REAL.

Yes, it's overwhelming.

I'll go into more detail as posts go on, details about the long road and mystifying timing of finally, finally, finally having someone say, "You're not crazy.  In fact, people like you are some of the toughest people on earth."  And my ever-loving, never-doubting husband yells, "Amen!"

PRAISE.  JESUS.


COMING SOON:

My first week of Gluten-Free living, and how Angie, Claire, and Simone have saved my sanity.

When best friends save your lives, again, and again, and again.

EDS and stupid human tricks.

Favorite media I'm consuming at a rapid rate.

Best Christmas present ever.















Friday, September 5, 2014

Flashback Friday Blog Style


I still live in the dark ages and don't have a smart phone yet.  I'm still rockin' the slide phone fad, <<cough, cough, birthday in October, cough cough, Kevin, cough>>, and frankly I'm too lazy to scan and upload photos, but I always find it hilarious to see old pictures of friends on ye olde facebook.

I'm one of those people who actually truly enjoys looking at family photos.  Do you have a collection of 8mm films from your trip to Key West in the 1970s?   Let's pop some corn and have a crazy old night.

Loving old pictures really means I love stories, memories perfectly re-lived or slightly embellished.  That's the marrow I wanna get at.

So, without further adieu, I bring you, in no particular order, my first Friday Flashback. 

Do you remember Miss Cleo, the ambiguously West Indies "psychic" who couldn't really hold her accent and was born Youree Dell Harris?



 I could see right through that act.  So could my friend Merica Mucker*.  

She decided to give old Miss Cleo a call and catch her in her own trap, determined to shut. that. racket. down.

When the phone bill came, it didn't seem like such a good idea anymore.

*name changed to protect her identity.
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New Year's Eve was always a bang-up good time on Woodward Ave.  Our family tradition demanded that at the stroke of midnight we must burst forth into the icy night banging pots and pans and other miscellaneous kitchenware.  

Our neighbors really loved us.  

One hallowed year in the early oughts (2004????), it was a meeting of epic proportions.  All the greats were there.  Leah of Chamberg, Quinn of house Smith, Ladies Alicia and Danielle of Humphreyland, and Dame Erica Schmucker.  After many hours of cloying libations and bad celebrity interviews, the time for cacophony was near.

But that year, we upped the ante.

Though time has muddied the recollection, I believe we traipsed about in various dress-up clothes from our basement stash.  Not yet satisfied that we would do homage to such an important event, we sought out the perfect accoutrements to the crazy train.

And there, down the well-worn roads of Woodward Avenue, went 5 brave women in their glorious garb, one lone clown shoe, and a bowling ball named Linda to guide the way.
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Growing up, I had a speech impediment.  In fact, it still comes out now again when I try to say things like, "Rob Roy," which somehow sounds like "Wob Woy."  It may have been adorable if I didn't sport a pixie cut gone wrong.

One year we happened to be at the zoo for Mother's Day, because what else would a mother want for her day than to take her 5 small girls to an enclosed area with a bunch of wild animals in 90 degree heat?  

Our local news station decided on a cutesy Mother's Day verbal acronym.  Adorable, right?  Why not hit up the lady with a bunch of hooligans, and your job's half done?  My letter was M.  

So, what word did I choose?

Marvelous.  

Or, as butch-cut 8 year old Danielle would say, "Mahvahlous."   



Perfect.

Well, the little segment aired, and we had our 10 minutes of fame.  That is until Mr. Muszik decided to make it my tag line.  Mr. Muszik was our neighborhood old man who pretended to be a codger, with a sly wink and impish grin to the side.  

Without fail, for several years, he would yell from his screened-in porch, "How's your day?  Is it mahvahlous?  There she is, just mahvahlous."   

And that, my friends, is how you help a kid own. it.  
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In honor of the anniversary of Mother Teresa's death, I had to include some oldies from Ceci, who used to yell, "Mother Pisa, Mother Pisa" anytime she found a blue sheet.







And some rando pics to top it off---prayers for sweet Danielle Rose as she labors to bring her first wee one into the world!!!








Thursday, September 4, 2014

Trudging


Yesterday, I understood.

I felt intensely the effort of being.

I understood the beauty/pain/exhaustion, the "it's all to much"ness dancing upon the string of losses/changes/transitions we've weathered these last weeks/months/years.

I lost not the will to live, but rather a will to move forward, to propel myself headlong into the coming day, put on my big girl panties, pull myself up by the bootstraps, or any other inspirational colloquialism.

I suppose it's all very un-American of me, to settle in to self-pity for the day, staring of into space, waiting for someone to tell me what to do next.  Where does this pile of folded laundry go?  Where do I put this form to fill out but we can't open our safe because the keys are missing?  How do I NOT think every snarky thing posted on social media is directed toward me?  How do I do the things?

Sometime it is just too much.  

And those are the days when you cry to your momma, call a friend, watch a string of <insert guilty pleasure show> episodes on Netflix, use those rosary beads, and go to bed at 8:00.

I thought perhaps my first post in almost a year should be effervescent, funny, full of pics and snazzerific Danielleisms. Well, those are there too, simmering in the background.  For now, this is the real deal. Not to be accused of inauthenticity, and prompted by my desire for connection, I decided now's as good a time as any to start 'er up again.

I'm so thankful for Christ, Our Lady, the saints, and all holy people who help shed light upon the way, assuring us that in a world striving to be unique and one-of-a-kind, we are not alone in our heavy-heartedness.  

Like my boy St. Ignatius of Loyola:

Christ Jesus,
when all is darkness
and we feel our weakness and helplessness,
give us the sense of Your presence,
Your love, and Your strength.
Help us to have perfect trust
in Your protecting love
and strengthening power,
so that nothing may frighten or worry us,
for, living close to You,
we shall see Your hand,
Your purpose, Your will through all things.


And this:
"Have patience with all things, but chiefly have patience with yourself. Do not lose courage in considering your own imperfections but instantly set about remedying them -- every day begin the task anew."
Saint Francis de Sales

What do YOU do when you're having a storm on the sea of Galilee sort of day?

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P.S.  Now that we actually have a home, are getting settled, and not moving cross-country, the blog sputters back to life.  Please subscribe/comment/engage, so that we can have a hearty back-and-forth!

Saturday, October 12, 2013

Earth to Danielle

Well, I cannot believe it.  

Can you believe this??  

It has been almost a year since my last post.

I was a doubter whom, with each passing day, thought I'd thrown in the towel.  Then the towel became a pile, which became a mound, a hill, a cliff, a mountain, now I'm a hotelier.

 Ever the choleric sanguine, I decided to come back to the blog after a crazy day of running about from soccer to a lovely Baptism, vigil Mass, YMCA, musical, and the day's not over.  Oh, did I mention Kev's in New Orleans at a Walker Percy conference?  Yeah, this seems like a good time to start again.  :)

WOOHAA!  It's good to be back.

This past year has brought with it innumerable joys, heavy sorrow, new soulfriends, and waning connections, beautiful community, phases of loneliness, sickness, health, homesickness and basking in our new life in CA.  Loving our new jobs, feeling stressed, owning it, wallowing in it, loving something fierce and screaming aloud to the crashing ocean at midnight.  CA to IN to CA to IN to CA to MA to ME to IN to CA. From public school to homeschool, self-hatred to self-onthewaytolove, extroversion to introversion and back again. Articles, concerts, Masses, papers, late nights, midnight singalongs, concerns, surprises, phone calls, serendipitous graces and sock-you-stomach torment, two steps forward, one step back, one step forward, ten back.  

Grace and strength when it seemed impossible.  

So generous a wellspring of joy a beauty, it hurts.

But, I don't have to unpack it all tonight, right?  I'm just going to say hello, wrap myself in a cozy blanket, look out over the mountains and remember: It is good that we are here.


Tuesday, October 30, 2012

Friendship

Though I began with the intention of writing a beauty post, I of course got distracted by the shiny day of interactions I had, and thought I'd talk about friendship.  Totally not going to obsess about getting it right, just getting it out.  Plenty more on this theme to come....
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I will admit it.

I have an inordinate need to be liked, understood and accepted.

I am easily hurt, and sometime feel like a 7th grade girl in my self-consciousness.

I sometimes get suspicious and question why people even like me at all.

Because I'm the funny fat girl?  Because I bring some laughs? Because I'm just odd enough to be fun but not too odd to be avoided?

Bull caca.

FINALLY, in my 31st year, I'm growing up.

When I meet new people or see old friends, I don't need to prove myself, convince them of my worthiness.  If they are or will be my friends, they know.                                              

Some at first may not seem like a friend match, but then slowly unfolds a beautiful relationship. It may take time, and that's ok.

Some will remain only acquaitances, and that's ok.

There will be those who, though well-meaning, just can't give what I need in a friendship, and that's ok.

Some friendships will start with enthusiasm and wane away in awkwardness.  And that's ok.

There will be friendships seriously grounded in shared faith, and those founded in a respect for one another's faith.  And that's ok.

I will meet people who need more from me than I can give.  I will honor them with honesty, and that's ok.

Some, with whom meeting induces a giant explosive awesomeness, and that's ok. (Here's lookin' at you, Nanette "Hey Soul Sister."

After weeks/months/years of distance, some friendships rekindle with richness more beautiful than before.  (Hello, Jantre and Chrissy)!

I am beginning to embrace the natural rhythms of friendships.

The best advice given to Kevin and me in our relationship rings also true for friendships.

Let it take it's natural course.

Easy, right?

Don't force it, don't fight it.

Be open to the Spirit, because you might end up at a park doing the splits on a Tuesday afternoon.  Twice.

Tuesday, October 16, 2012

Festivity of Beauty

Well, a day late and a dollar short, but I'm still going to post a beauty fest/wandering thoughts.

Before that, some unloading.

We spent last night in the emergency room for what looked like a possible second miscarriage.

After a wonderful gathering with friends on Friday night and Saturday morning, I quickly began to have many of the same experiences as when I lost Benedict in July. Memories returned to me with intensity and confusion, and my beloved, steadfast Kevin tended to me like the true servant-hearted man he is. Janice, too, always thinking of how to to serve, came and gave me hugs and sat with me and let me ramble and cry. My adoptive mama while my mama is so far.

After resting/suffering much of Sunday, the doctor said it was important to come in to the ER to be sure I wasn't in need of a D and C or transfusion.

Okay, it's our first situation where we need to leave on a whim, and where to we turn? A role so often filled by family, to whom do we turn in our time of need to care for our sweeties as their own?

The Guy family, of course, came through again.

Laura and Adam have been such a welcoming force in our new lives here, consistently calling to check in, inviting us to gatherings and showing genuine care for us as we make a new home and community.

Dependable, loving, authentic.

As I called to tell Laura what was happening, before I even had a chance to ask, she said, "Bring the kids over. Pack pjs, they can spend the night if they need to."

And that, people, is how to be a friend. To anticipate needs, to support with joy, to actually and actively show care.

So long story short, we sat in the ER for 4+ hours, underwent tests, confirmed that it was NOT a miscarriage (praise God!!!!!!), waiting, blood tests, waiting, yadda, yadda, yadda. Texting ferociously with a dear soul friend, well-versed in these situations with a doctor hubby to boot. (Thank you, loves), and more waiting.

Diagnosis: Dysfunctional Uterine Bleeding. Yup, that's a pretty good description.

Follow-up appointments and testing will come, but today has been a recovery day for me. Please pray that my energy will perk up and that I can actually get back to "normal."

But, you know, no matter the drudgery and challenges we've had, there is ALWAYS beauty to be found....
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Beauty:
My Jacob coming into his own, smoothing over some rough edges with patience, hardwork and lots of snuggles.

Best examples of his amazingness this week:
He CLEANED, unbidden, uncomplaining, and THOROUGH. I mean, boyfriend organized books, returned items to their proper place, swiped, wiped and rocked it. This happened not once but twice this weekend, bringing mama to tears of joy. No joke, he said, "Mama, can I do anything more to clean?"
Speaking of tears:
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Beauty: Watching old favorite movies and enjoying them through the eyes of my own childhood, anew as an adult, and through Jacob's eyes. This weekend's gem was:



Remember this version??? It's on Amazon Prime streaming. Jacob wanted to watch Avengers, but with a bit of, "it was one of my favorite movies as a kid," coaxing, he agreed. And it did not disappoint.

There's something moving about watching a film so simply done, dependent largely on dialogue, no major special effects, and to see one's child become engrossed. Even in the modern age of bigger, faster, louder, given the chance, our children can still fall in love with movies like this.

During the penultimate dramatic scene, I was of course already bawling. I look over to Jacob, whose hands are shielding his face from me. I moved them away, and there are huge crocodile tears pouring down that gorgeous face.

He's got it, that gift of tears, people!
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Beauty:

BCS Standings
RKTEAMRECORD
1Alabama6-0
2Florida6-0
3Oregon6-0
4Kansas State6-0
5Notre Dame6-0


AP Top 25
RKTEAMRECORDPTS
1Alabama (60)6-01500
2Oregon6-01436
3Florida6-01361
4Kansas State6-01296
5Notre Dame6-01283

Beauty:
Meeting new friends.
I came home from work the other day, hormones all wacky a doo and as Kevin walks into the yard I melt into tears in his burly arms. We look over to see the BEAUTIFUL rainbow at the bottom of our hill, as it meets up with the mountains. A sweet young couple with a baby, a toddler and a puppy in walk past. I apologize for the random scene of a grown woman crying on the lawn, and we strike up a conversations. They, too, are new to the area and looking for a young family to befriend. Well, what else would we do but invite them to dinner the next day?
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Beauty:
Getting back to playing hosts
We decided to finally have a large group of people over, no matter if our house isn't perfectly set up. So, Jess and the kiddos (from the aforementioned snippet) and the MacAllers and their granddaughter and Paul and Janice came over for a night of john Zack's twice-sainted grandmother's pulled pork, wine, music and a whole lot of laughter.

And it was good.

And it felt like home. Our new home.
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Beauty (props to Dominic)!!!

Blessed John XXIII at the opening of Vatican II, fifty years ago today:

""We feel we must disagree with these prophets of gloom who are always forecasting disaster as if the end of the world were at hand.


As Dominic says of the end of the world being at hand, "Beauty tells us it's not." Preach on, brother.
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Beauty:
Kevin met some lovely people at a talk he gave a several weeks ago.  A few days later, he got this email:

After our wonderful session on the Psalms with you on Saturday, Marsha and I told the other members of our group about you and your family's move to California. Naturally everyone asked if you had been to Disneyland yet with your children. We explained to them that financially it wasn’t do-able for you at this time. Well guess what???? We all want to send you and your family to Disneyland!!!. All 6 year old boys and their little sisters should go to Disneyland.

Guess where we're going this weekend???



The kids know that we are going at some point, but we gave Jacob the option of knowing when or  being surprised.

He chose the latter.

It will be a 5:45 wake-up call on Friday, and you better believe we'll catch it on camera.

We're doing Disney Adventure on Friday, then Disneyland on Saturday where my soul sister Jantre and her sweet fam will join us.

YAY!!!

Go on, beautify your week!

Monday, October 8, 2012

Beauty Fest

It's Sunday, and while I missed last Sunday, I'm on the horse again to kick-start your week with some beauty.

First of all, I am deeply humbled. 

The response to the post on our Benedict Joseph was absolutely overwhelming.  I am thankful for your candor, your support, your bravery in sharing your own stories of loss, and for the healing we offer one another in sharing the burden of grief.  We have added your children to our family book of intentions, and will pray for them always. 

Something that was shared by several people is the link to the Shrine of the Holy Innocents.  Here is the description from their website:

Often children who have died before birth have no grave or headstone, and sometimes not even a name. At The Church of The Holy Innocents, we invite you to name your child(ren) and to have the opportunity to have your baby's name inscribed in our "BOOK OF LIFE". Here, a candle is always lit in their memory. All day long people stop to pray. On the first Monday of every month, our 12:15pm Mass is celebrated in honor of these children and for the comfort of their families. We pray that you will find peace in knowing that your child(ren) will be remembered at the Shrine and honored by all who pray here. 

http://www.innocents.com/shrine.asp
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Beauty:  Spending the afternoon with my sweet Jacob, buying his Tiger Scout uniform, going out to lunch and not ONCE feeling like things were going to come apart at the seams.  It's an incredible thing to see your child becoming a better human being who is actually pretty darn amazing.
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Beauty:
Remembering this sweet baby, born two years ago tomorrow (10-8-10)
video
Our sweet Mara Naomi, Mar-Mar, we are so thankful for your sweetness, your cuddles, that mega-watt smile, your adorable talking and for making our Elise a big sissy.   You will always and forever be our "Miss. 'P.'"
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Beauty:

From Dogma and Preaching, Joseph Ratzinger
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Beauty:
Feeling welcomed so heartily.  This Friday, it was the MacAllers who invited us into their home, shared an INCREDIBLE meal, wine, wii, and of course a singalong.   What a blessing, to feel like we were amidst immediate friends.  Love y'all!!
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Beauty:
Having neighbors and friends like this: 

Who love us and our littles like we are their own.  We love you, "Auntie" Janice and "Uncle" Paul!!
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Love, Love, LOVING my job and the obvious gift it is to my peace of mind.  I find I'm a wonderful part-time working Mama at this season in my life, and that's great
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Okay, people, link up, comment, email, facebook, but don't leave me hanging on my own to revel in this beauteousity! 

 Have a beauty-filled Monday!