Fireworks, Disappointment and Holy Freedom

Earlier this very day, I wrote my first blog post in a while, on the book, Accidental Saints, and how, as Christians, we dwell from a place of fresh mercy; God to us, us to our neighbor, our neighbor to us. It's ridiculously easier on paper. I was, dare I say, happy all day about attending our July 4th Celebration, on the 29th of June, (that's how Michigan roles-don't ask). I actually told Tim, the one I love, but barely respite with, "I am so excited to see the Fireworks with you!" 

And I was, until I wasn't.

A series of unfortunate and accidental events occurred that can sometimes happen when you have a Special Needs kid. And as a result,  an hour and a half before the fireworks started, Tim and daughter were a mile away, stuck in traffic, and unable to reunite. 

I sat, purposely isolated, overwhelmingly numb to another disappointment in my life along this same, tiring thread. I was sinking, and mad, and exhausted, and starting to get hopeless. I just couldn't reel it in.  I realize that this was an extreme response on the outside, but this separation was reinforcing all of the bitter things that pain and fear attract. 

It was then, as I was still in my vortex of funk, that I felt a warm, and newly  strong 10-year old hand wrap itself,  literally, around my cold shoulder. Owen, without knowing any details, decided to remove himself from his group of friends where the cool, older kids sat, and he came, and found me, and sat right next to me behind the laughter and party of everyone else. He just held me quietly and confidently. He asked me if I saw this, and that, in the display. Picking up on my stillness, he asked me if I was okay. 

I wasn't, but then I was. 

By the end of the night, even though I knew My heart wasn't all sorted out and okay with the world yet, I actually noticed myself laughing and clapping in his presence. Owen's joy and love; you just can't resist them, hard as you try. This morning I realize that I was the lucky recipient of what theological technicians call an object lesson. 

Christ left HIS metaphorical spot where the cool kids hang, to go sit with the broken, worn out, weary people, who sit on the sidelines and try to fix their broken hearts, only to discover that mercy is ridiculously easier in letters then it is in practice. 

So, Jesus became mercy.

It is the mercy of God that is new every morning, that gives hope along our weary roads. Those worn down paths we all have. It is HIS love that enables us to forgive and receive forgiveness, as unnatural and unwarranted as it may feel. HE is the glue and joy of my communion and community. HE is living hope, and ridiculously powerful love, love so merciful that I can't resist it,  even when, despite all of my instincts to fix and control things, all I can do is surrender. 

Sister, Sister...

“Sister. She is your mirror, shining back at you with a world of possibilities. She is your witness, who sees you at your worst and best, and loves you anyway. She is your partner in crime, your midnight companion, someone who knows when you are smiling, even in the dark. She is your teacher, your defense attorney, your personal press agent, even your shrink.” –Barbara Alpert

Whenever April 28^th rolls around, I always feel like it's my birthday, actually. Kristen is one of my life’s greatest gifts. As I contemplated what picture I should dig up for the customary Birthday Post- this one came to mind…and no joke, I had to dig 10 years back into the recesses of my yahoo.com account.

What makes this picture so funny, crazy, special… is that it wholly reminds me of Kristen, metaphorically speaking. I had just given an epidurally-blessed birth to Owen and was relishing in the ‘Thank the Lord he is finally OUT!’ stage. You have no idea. My elation, obvious, however, what you do NOT see in this picture, is my mouth full of metal braces. Kristen went home, photo-shopped the picture, replacing metal joints and wires for pearly whites, digitally framed it (hello 2006), and sent it back to me. And that is exactly what her love does to those around her- it frames us, and reminds us of where we are going, not where we are, it points us to who we are becoming, and not who we currently are.

It could be easy to assume that her life is #blessed…she still looks like a 22 year old fitness model, has four beautiful girls, a devoted & hilarious husband, a closet full of all the things, a degree, a job, lives in paradise, etc… But, truly, it’s the hidden places of her life where all the magic happens.

Excepting her kitchen floors, Kristen is not afraid of the mess. She has loved people, really messy people, in a way that has required laying her life down. Seriously- if y’all only knew how true this statement was. Moment of silence. She is devoted to her family- she is such a loving and strong Mamma. She does all of the amazing and impossible things that mamma's do, and her babies are becoming strong, confident and generous Little Women.

She is equally devoted to her friends. She shows up when it counts. I have leaned on her strength, prayers, faith, and encouragement countless times and in countless ways- especially the last few years. Like- 'I know you are busy but I need to you listen while I cry it out and then tell me its all going to be okay'. And she then listens well, and then says the things, and then I actually believe it all is going to be okay.

She doesn’t just talk the Gospel talk- she walks it. She doesn't slap cliche' on suffering, but finds Christ inside of it. She forgives others when she would rather not, she extends grace, when it’s just plain easier not to, she confess, and repents, and allows her life to be transformed. She deeply loves and trusts in Jesus, and lives an ‘I am Second' life. And all of those around her see this, and know this, and experience the benefits of her love.

She obsessively watches The Voice, plays Christmas Music in mid-October, cooks a mean Turkey, keeps Red Bull in business, can eat a caramel apple like Mr. Peepers from SNL (a reference you probably shouldn't google), lives for Fall candles and open windows, and manages to keep life as fun and as memorable as a rich life should be. 

So, for all of the ways you have made me laugh this year, the ways you have pulled me out of my head, and for your friendship, words of life, and truth- I love you, Sissy. Happy Birthday.

The 100 Days of Summer

The twins, as we refer to Cole and Lily, celebrated what their respective youths group donned 'The 100 Days of Summer.' Thursday outings to pool parties, Wednesday night lake house parties, lunches out, concerts, water-war tournaments, (insert an 'etc' dressed up in in dollar bills and driving time well spent). The twins went on their mission trips as well; Cole to the heart of Detroit and Lily to Pontiac. Their youth group and its leaders do a crazily beautiful job of providing intentional opportunities and pouring out abundant love into their students, consequently raising up children whom posses servant-leader hearts and outside-of-themselves vision. The mission teams this year talked to strangers in both poor and affluent areas of Detroit, gave money away in grocery stores, prayed for people in the city parks, served at food banks, worked in the school systems, and helped single mothers with their babies, to name a small fraction of what was accomplished. They shared the gospel in word and deed. I want to be like them when I grow up. Needless to say Cole and Lily both claim 2015 as their best summer yet.

Owen enjoyed Grandma & Grandpa time, a visit up North with our more-like-family-than-neighbors neighbors, as well as many a visits to Stoney Creek, swimming in the lake, roller-blading, biking and hiking the 'more difficult' trails with his Mamma. Hiking, we discovered, is one of his favorite ways to spend time together, to my unabashed delight.

Whitney spent 40 days, 5 days in a row for 8 weeks, in what she called 'The Tunnel'. She would relax and watch a movies as oxygen saturated her lungs and the increased atmospheric pressure of her pressurized chamber forced the oxygen towards the inmost places of her body. This process, Hyperbaric Oxygen Therapy, has been used to cure diabetes induced wounds, The Bends, carbon monoxide poisoning, and has more recently been shown to help increase progress and support healing for those who suffer with  PTSD, autism and cerebral palsy. We saw improvements in her gait, speed, attention, and vocabulary. It was a financial and time commitment risk, and her parents, not risk takers by trade, are pleased with the outcome.

If it can be said that the kids went on their journey of 100 days, it can most certainly be stated that I went on my own journey of 40. Truth be told, when Tim and I finally committed to the Hyperbaric Treatments (HBOT), I was filled with both excited and trepidation. This would require a significant chunk out of my every week day, lasting throughout almost the entirety of my summer. This was supposed to be my down time, my respite, but I resolved to do what Mom's just do: grit their teeth and bear it. Silly girl. I had no idea that these 40 days would be one of the most restorative seasons of my life, heart and soul as well.
But that's another story for another time.

With Fall just around the corner, we have a lot of dance, cross country, swimming, and school ahead, so without further adieu, I present to you an obnoxiously long presentation of our summer in photos:

Summer started off with Owen's birthday, his 9th this year, and one of our favorite traditions, Rochester Heritage Day.

A week later we had Lily's birthday, her 12th, and we celebrated with her BF Hanna, and a day at the mall. 

A week after that Whitney said goodbye to her 3 precious friends who won't be returning to her school this year. We still keep in touch with their families. Good people. 

Then she got these precious new glasses. Goodbye baby Comos, hello Juicy Couture. 

Here we have Tim wringing out his shirt after an 8 miler up and down the crazy hills that give our city its name. No big deal. Unless you are me, and then it is a very big (not happening) deal. 

Our yearly 7-mile bike ride to the Paint Creek Cider Mill for lunch, aka milkshakes for the kids, followed by a 7 mile bike ride home. I was really ill around this time and fell asleep on my PORCH after this. Yeah, we're classy like that. 

My dear friends Chris & Shane at the June 23rd (not July 4th) fireworks show. Chris is Hanna's Mom, and one of my MI BF's! 

My older two served at Flip Camp (our VBS) while my youngest two attended. That face!

Next up, Cole was celebrated by all for his 14th,, yes I did say that, 14th birthday. Owen was pretend-crying,:"I'ts soooo beautiful," cracking us up as he always does, mocking their brotherly love. Some pictures you can hear, and this is one of those for me. 

These are my babies on Lake Huron, 3.5 hours NORTH of where we live. People here are addicted to all things North. I can understand it a little more now, actually.

Mr. Dennis and Mrs. Sandy brought us to an ice cream shop and then we all watched the most humongous firework show ever at the adjacent beach. We all agree that this was one of our most favorite summer weekends.

Just because there has never been two more different siblings that loved each other so much. Be still my heart!

Sometimes in July you wear jeans and sweatshirts. This is our library, where we frequent often. The garden is amazing.

I found 5 pairs of Roller Blades, all in our family's proper sizes, at a local resale shop during this Saturday morning. I told the kids to practice in our driveway while I went to work. When I came home, Tim and I thought it would be fun to take everyone on the 6.1 mile loop around Stoney. Ummm...not the best parenting idea ever, but we improvised, shortened the trip, and had an all around blast. Ok- Tim and I did, the kids...not so much. 

But then, the next day, this. Seriously, Owen? Seriously???

Erma's is this frozen custard place, tiny and unassuming, about 20 minutes away by car. And it is Food Network worthy. Here we have Owen surrounded my his besties, Carson and Westin. 

I MEAN...

COME ON!

Here is Whitney on one of her many days at HBOT, referred to as "The Tunnel', by this big baby girl. "I go to tunnel, I watch movie." 

100+ kids praying at Cass Park in downtown Detroit. Story is being written all over the place around these parts. Hope and restoration, inside and out. 

A little older, a little  lot more lined, but even more in love. He still makes me laugh until I cry, often.  

Sometimes it's these moments that I think I am going to miss the most.

Lily has had one goal for the last year: to get on pointe. AND...drum-roll please...she did! I am over the moon for her! 

Cole is a ham. Enough said. And he turned into a beef neck this summer as well.

This is Mrs. Alissa, perhaps the most generous person one could ever meet. Like, I literally cannot even keep up with the thank you cards I need to write her. She took Owen to the Detroit Zoo one day. Owen came home and said later in the evening, "Mom- when I grow up and get a phone, I am going to make sure that I have Mrs. Alissa's number in it." That is some serious cool points.

This summer I started working for my outstandingly talented friend and wedding florist, Kate. I have spent many Saturdays traveling to different venues and setting up flowers for brides. My favorite days though are the ones in Kate's flower shop making the arrangements. I did NOT make this one, but let me tell you- I cannot even believe this is my job! It is such a creative outlet and blessing. One of the highlights of my summer, for sure. I am already looking forward to next May.

I started painting things other than walls this summer, so Owen was my sue chef when I built this much needed easel. 

Lily and Hanna completely planned...as in Tim and I did NOTHING...this party. It was a mission trip reunion party. But notice something...yup, that's right...BOYS! We were really impressed with their logistical operations, from invitations, to food, to the decor. These two are a force! But boys...

This is from our 1st hike. He kept saying how this was his favorite day ever, tied with about 5 other days.

Mom and Dad came to visit for almost a week, and we had such a special time. Dad reading to Whitney is the sweetest.

Dad got sprinkles at Erma's, after we urged him too, first time in 40 years. He loved both the sprinkles, and the outing. 

The older 3 kids, Mom and I went to a late showing of  Shaun the Sheep, Mom is their biggest fan. Is she not the funniest? My Dad's name is Stuart, btw.

Obligatory photo before our dinner in downtown Rochester.

Owen decided to get baptized...and it just so happened that Ava and Emma, his cousins, got baptized the same Sunday morning in Orlando...completely unplanned! 

This is what I am talking about...they partied like it was 1999.

And we ended the summer last Sunday at the church picnic. These two, my book ends.

And speaking of ends, if you actually read this all the way through, I congratulate you for your better than most attention span. Thanks for sharing The 100 Days with us. I hope to update again, hopefully before next summer. 

Love,

J

THE CONTRAST

THE CONTRAST

There are two ways which I can interpret the freak snowstorm that blanketed my finally thawed out yard with 4 inches of snow this 31st of March morning: as a hellacious set- back, or as a beautifully wild reminder that I cannot place my need for progress and stability in the hands of the weather. This evening, as the evening before, the sun warmed the earth against the backdrop of the bluest skies 2015 has yet to produce. We ate dinner together as a family while the ducks swam in the  mini-pond and the snow continued to retract, exposing our marshy, brown-green grass. This theme of contrast webbed its way into the rest of my day as well. One child was shaving in the bathroom downstairs, while the other child simultaneously  pooped their pants on the living room carpet. Tim wiped said hiney while I used a wooden skewer to scoop out poo from the cracks in between my white, farmhouse planked floor. Who said marriage wasn’t romantic?

Whitney had her IEP* this morning. I have been looking at that date on my calender for over a month now. Not dreading it, but properly and militantly guarding my heart from the root canal this tends to be emotionally. The meeting went well. Praise be to God she has met her previous goals, and continues to progress in every area. I heard her described again today as a mystery. That’s a fact. She is coming along, but has more along to come.

After this meeting, exhaustion set in. The kind of exhaustion that sneaks its way from your soul into your body without you noticing how and when. After an attempted recharge rest on the couch while my kids blessed me with mostly quiet, I drove to the park for a run with my partner. Talking to Bobbi on the way over, I finally figured it out. The contrast. The root canal. The heart fatigue.

After 6 ½ months of a prolonged and challenging parental season with my Whitty, the tides have seemed to turn. She was in a consistent state of combativeness and bad attitude throughout most of her day during this arduous season. I couldn’t bribe or distract my way around this. I had to meet and deal with these will issues head on, day by day, one by one, in patient love (ok-not always patient- but trying). Having not had the same expectations on her as a welcomed part of our family, she assumed her role as the center of our family, and for better or for worse, she was correct in her assumptions. Therapies, doctor appointments, meetings, naps times...so much of our everyday life was altered and set according to her needs. Thats what families do. But as the dawn of her 4th birthday arrived, what Whitney needed was training in the attitudes of the heart, and in self control, according to her abilities.  And she was able. So, for six months I was near worn out and surviving by way of enduring, as her Mom. When I say the tides began turning last week, I mean that our winter was leaving and spring was arriving, concerning her. Potty training was resumed for the 3rd time, and she was finally, finally, successful in that she demonstrated she could use the potty. Of greater importance, though, was her willingness. Every time I called for her to come to me, she would stop what she was playing with and walk on over, cheerfully navigating the balancing challenge of stepping over and through her books and toys. She was sweetness multiplied. Her spirit released joy and peace in our home. My Whitney had displayed the first fruits of mastery over her emotions and will. I have spent the last week and a half swimming in joy over her emerging potential. She can use the toilet, and as any parent with a 4 ½ year old in diapers will tell you- that is life changing. Not so much for what it is but for what it represents: independence and possibility.

But then, the IEP.

The root canal about it is this: when I am with Whitty, and all is well, I feel a peace about her and her future. Not an assurance, mind you, but a peace. When I am sitting in an IEP meeting with all of these therapists and specially licensed professionals, with all of their data, and suggestions, I have to fight inside. I have to fight for that peace, that faith that her future is good, and God has a plan. I cried on the phone for 20 seconds today because I also have to fight,  1 on 1 combat style, loss and grief. See, IEP’s are not normal steps in the normal education process. An IEP, on our end of the scale, means that things are NOT normal. She is not normal. She is a child with a disability. For 60 minutes I had to look at Whitney through the eyes of her having a disability, in order to be present and objective, and appreciative of all of the diligent work of her dedicated teachers and therapists. However, IEP meetings are, for me at least, part of the reminders of the disappointment, it stokes grief. Yet, there is also a call to balance the tension between the ‘What If’s’, and cultivate thankfulness in the ‘What Are’s’, always leaning more towards the latter. In truth, this isn’t confined to parents of children with disabilities...it marks and cuts us all.

By instinct more than anything else, when I feel the din of fear arriving, and after these intense doctor or school appointments, in which my confidence as a parent is challenged on a molecular level, I hold her. I wrap her up in my arms, and snuggle her under her down blankets, with the sun shining all around us. I tell her that she is smart, and funny, and wonderful, and beautiful, and amazing. I tell her that I am so proud of her- for how hard she is trying, and for her sweet heart and her good attitude. And then I tell her, a thousand times over, in between a sea of kisses, that I love her. And in contrast to the silence that has always followed those three sacred words, she answered back today.

I love you, too.

*IEP- Individualized Education Program-A federal law called the Individuals with Disabilities Education Act (IDEA) requires that public schools create an IEP for every child receiving special education services. The IEP is meant to address each child’s unique learning issues and include specific educational goals.