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Father God, I am but one voice, one soul, but I know I am as precious to you as if I was your only child, for Your love knows no bounds. I come before you today in my own imperfection and brokeness. I thank you for the gifts you have given me and each of us. I praise You that I am able to be on this journey. As I complete this path today, may each step be an offering of prayer for healing, comfort, and right peace for the special intentions of those I carry with me. May I aim for this in pureness of heart and not for my own attention or recognition, that You be seen and heard and felt more clearly and not me. May the aching of bodies, hearts and minds connected to these intentions be eased in some way through Your grace and mercy.

What do you celebrate?

I celebrate family and friends who surround us with love. I celebrate a town I have been a part of my whole life, where I can pick up the phone to get a medical answer, but if I need to go in, the drive is short and the warmth and support is over-flowing. I celebrate two children who smile and cry and try. I celebrate their awesome teachers. I celebrate community. I celebrate faith. I celebrate health and sickness, happiness and sadness, gain and loss, for all have yielded growth. I celebrate you – you are a wonderful and beautiful creation.

Spinning around me in the driveway chasing one another, the sunlight lit their laughter inside of me this morning. These two beings from me. These two spun my world, and some days I am still dizzy with love and fear and exhaustion and uncertainty and hope. This girl will be 7.

I remember wondering how I could possibly have enough love for another with the overwhelming love I felt for her brother. “You will,” my mom would reassure me, smiling at me, lost a little in her own memories of questioning. And when feisty Kira was born I did instantly feel my love expand immeasurably, and knew then how my mother had felt when she held me.

Oh, Kira, my little lover of wildlife, whose pile of rocks and sticks and leaves and blades of grass grows with each season, how you have tested and taught and touched me. Out the door into the rain, “spinny” dress twirling in the mud. Another doll? Yes, another doll you want, to dance around your room with the others, for you to introduce her to the wonderful adventures you go on in your room.

Kira had terrible bouts of reflux, and in the co-sleeper I would wake to her choked breathing in the night – lift her up, release the pressure and soothe her until she could go back to sleep, as I would lay there, grateful…and frustrated (exhaustion does that) and wondering at her in amazement.

The toughness that carried Kira through the reflux became more, became a challenge, as I would stand in awe of this toddler who would stand her ground, staring me down. And later, when the feeling that had willed her to lash out would subside, she would curl into my arms as though to escape from herself. She does that still, now asking me how she can conquer these bad feelings that come. We’ll conquer them together I tell her.

Just as sternly as she can speak her mind, her love overflows, both to counter the tough times and in a genuine seeking to bring smiles and laughter.

It was determined, unexpectedly, that Kira needed glasses when she was nine months old and I took her to have her clogged tear duct checked. There had not been any indication to me that there was something wrong with her eyes. Perhaps because of the reflux and the long list of medical specialists I’d had with her brother, it seemed one thing too many and I cried and cried. She wore those glasses like a cute little doll, though, and I healed. About 9 months later she needed a new pair and they were back ordered. Two weeks later when they came in, she wanted nothing to do with them. She was like that with the eye patching too, not wanting anything to do with it and making it very clear that she definitely could battle it all day if needed.

There has always been a strong will in her.

Kira is not a young or an old soul, but both. She will stand at the window thumb in mouth with cuddle in hand, and turn to tell me some deep thought she’s had about something she has seen or done or felt. Cuddle in hand and introspection in full swing, I am completely overwhelmed with a sense of profound respect for the who she is, balancing a world that is confusing and unpredictable and sometimes cruel.

We are alike and very different. I see her struggle with her emotions and reach to tell her we can work through it now, that she does not need to battle them, as I did, through so many years ahead. Yet, I know that I also must let her unravel some things for herself, as herself, and we will take it one day at a time.

While our house is a stage she dances and sings and performs feats of stuffed animal jumping in, she does not want to take any classes, certain she’d be much too shy. I tell her, in time…no rush, and her performance continues.

Like me, she is a fan of all four seasons and appreciates both the mountains and the ocean…yet most of all, loves home.

I tremble some days at the thoughts of the teenage years, but then I think of how I could not imagine how I would be able to love her as a baby deserved and instantly did. I know that it will be hard and there will be moments where our mutual toughness will test our love, but we will make it.

For the first several months of her life, Ephraim referred to her mostly as baby. He was quick to bring me to her if she made a sound he felt meant something was wrong. These days, he will pull her hair and tease her, but be worried and attentive if she is sick or gets hurt.

As she has started to surpass him in some areas cognitively, as I suspected would happen in their childhood, I watch the dynamic of how they are figuring out when to teach and when to learn with one another.

At times, she is eager to grow up, to wear make-up and date and do the “things big girls do” and at other times she asks me if she can snuggle on my lap and pretend she is a baby.

For now, we said good-bye to the last bath as a 6 year old, the last 6 year old hug, the last 6 year old kiss good night. Tomorrow we will meet 7, ready for all of the new discoveries it will bring us. Her brother will kiss her on the head, as he did the day she was born and likely will tease her. They will fight. They will make-up. We will laugh.

Thank you God for entrusting me with this beautiful little girl for the past 7 years. May I continue to grow in my understanding of what that means and how I can best raise her to be pleasing in your eyes, Amen,

Happy 7th Birthday Kira!

My daughter walked slowly over to the table where I sat playing my guitar and singing and put her hand on mine.

Eyes peeking out behind glasses, tiny lips unsure of what to say, “You sound really beautiful, but I don’t like that song, Mommy.  It’s very sad.”

“Why?”

“The person is lost out on the water and no one is coming for her.”

Teaching myself to play the guitar, I’ve been seeking out new songs online that appeal to me in lyrics and tune, in addition to some I already knew.  I taught myself a song called “Find Me in the River”.

From my daughter’s perspective, the song was about being left.  So I scooped her up onto my lap and hugged her against me and explained that the song is a person singing to God, knowing that He is always there.

“Even though the person has gone through a lot of hard things – like the thorns, suffering, feeling cracked and dry – and right then feels like there is no one there, the singer knows that God IS there, and His healing love will make it all better.   It doesn’t mean it is easy, but the person trusts God anyway.”

“Oh, so it is a nice song,” she smiled softly, playing with my fingers in her hand.

The song went from one of hopelessness to hopefulness for her.  The singer was still alone in the water, reflecting on the challenges, but was singing to God, not a person, and knew the hard times were part of the whole purpose of life.

In our lives too, when we forget the context, the many things that are good and healing, and when we forget that it is God who we need to trust in, we too can hear a sad and lonely tune, one of being lost at sea.  When we place our situation in context, though, and remember that our life is a culmination of many ups and downs, often unexpected, we see that there is much more than the hurt in the moment.

Surrendering to God and allowing our faith to rest in His understanding of it all, there is clarity of the ever-present hope in our lives.  We are set free on our knees, not submissive to the challenges we face, but receptive to the strength we are given to endure.

Throughout my life I see sadness that seemed insurmountable, but I am also able to see amazing things that occurred during those times of deep sadness – lessons learned, outreach given, a sculpting of the clay that is me.

Some challenges this week have left my mind spinning a bit, reaching for the steadiness of the bannister of faith, to ward off the anxiety.  Not too far over my shoulder, though, I see the times of uncertainty in income, which brought amazing grace.

Thanksgiving baskets.

An evening snack with Santa, gifts at his feet.

Hands reaching to us with offers of food, clothing and comfort.

A Christmas Eve porch filled with presents whose worth was beyond what they might have cost, as the children and I kneeled down to pick them up and embraced in a hug at their being on our doorstep.

This too brings gifts.  This too shall pass.

“Find me in the river, I’m waiting here.”

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 Part II – When the context is

(to come)

When we look out at the many faces we see, those we know and those we don’t, they reflect no two people who are the same. This is good. This has purpose. For God, in all His wonder, envisioned each unique path and gave it life.  He created us to be different, beautiful and magnificent.  If we could but greet each day to this truth, that we have at the moment a purpose distinctly ours that rises above any role we might choose. There is no other than can fill the place of you.  The absence of any one of us would indeed impact the world no matter what contributions we feel we have or have not made.

We are charged with something multiples grander than any number assigned to us through income, age weight or family size. We are to be each our oneness and to be very much a part of everything. We arch our backs with both those who suffer and those who torture.

When I look at the wholeness of my body and heart, decorated with scars seen and unseen, glorious in the folds of skin, pinching at the muscles and fat of my arms, I know that through hurt and joy my  meaning on this Earth is no more or less than any other. The medical victories and war torn countries, the oppressions, the struggles and laughter of my children, and my own heart’s laments and leaps seem all woven together in the lines on my hands.

And what of these lines? To where do they lead?

To live.

To live to be the piece I am in all of this and to see the pieces we all are.

However meaningless, tedious or tiresome a part of our journey may be, we own each moment we are able to breathe in the air that travels the world.

A newsfeed of births, birthdays, deaths, disdain, bitter words and encouragement shouted is but a single grain of sand.

Each heartbeat beckons us onward, to live.  TO LIVE.

We live and our imprint remains in some ways that we will never know.

Let us seek love and hope and be mindful of the way us all being different is what we share.

Let us live to be the try.

Breeze blown whispers of reeds surrounding
the live in the moment now, with painted seashells lining decks of lighted darkness to be kept.
The moment rises up bamboo pointed to the sky with twinkling, and a chair that rocks on four legs.
Cheers to the maybe and every faded memory.
Years of the waiting and every let it be.
My blood runs not hot nor colder still
for no rush is needed to see.

I went to the water’s edge and set my soul
to the waves and sands that move in time
without regret or to disguise. And in the
breeze of beach’s glow, the mist re-breathed
the heart to go. To go.

9 years

In October 2004, I held in my hands a very real change to my life, a white stick with two pink lines. It was the first of many things at the start of Ephraim in my life that I would touch with my hands with wonder in me.

Papers that would list the measurements.

Instructions.

The numbers that indicated something might not be okay.

The arms of a chair, waiting.

His tiny body and an oxygen tube that first day, for a moment, before they brought him away to another hospital. May 14, 2005.

A bottle of milk I had pumped to send to him, while I could not hold him in my arms and nurse him.

His tiny hands when he was brought back to me.

A baptismal candle.

A toy, waiting for him to respond. He didn’t respond.

His ever twisting and spinning wrists.

His precious head against me, each night, as he struggled with sleep. He still struggles with sleep.

In the months and years to come, the hope of believing.

And when the worries of a new mom became the reality, the pen to sign the documents to begin the parade of people, months before he could walk.

The evaluations – physical therapy, occupational therapy, special education, speech therapy.

The Benadryl when another allergy was discovered.

His body as he awoke, a toddler, from sedation; his heart rate settling quickly when his eyes would meet mine.

The phone, as pervasive brain damage was said like something distant.

X-rays and Mri’s.

My forehead in 2008, as I stood in a hospital room dimly lit, swaying to the music of beeps on a machine, Ephraim’s moans, his new baby sister’s sleeping gurgles and my mom’s deep breathing on a hospital couch in the corner, each spike discharge dancing on the screen.

Medicines. An Epi-pen.

Rubbing my eyes from the reading after the diagnosis of Ehlers-Danlos Syndrome.

My courage when I stopped the tests without a definitive answer because it would not change the course of his life, and I did not want him to have to continue with poking and prodding just for details.

His backpack before he started daily preschool for special needs. His pillow as I awaited his time to come home that first day.

Lists of foods and strategies and charts and graphs.

His nebulizer mask against his face as he drifts to sleep, the asthma soothed, the vomiting stopped.

Tissues to wipe his tears as he has grown more aware that he has many challenges.

His fingers to keep him from digging at his skin.

Clean clothes on the way to the elementary school nurse’s office, another accident or difficulty with cleaning himself well. Another chin to lift up and say, “it’s okay”.

More than all of that,
I have embraced a child who radiates love and warmth to those around him.

I have pushed out on boundaries with him and reached up in prayer.

I have held his little sister and watched him hover over her with complete conviction of protection.

His confusion as he became the man of the house.

His arm against mine, as I looked out the window, “Sometimes sad comes, Mommy, but it will go away.”

I have held his laughter to me in dark nights.

I have held the hope that is in his sweetness, in the way people are touched by him.

“Rub my back, Mommy?” he will still ask, and I do.

In the last month, I held his hand for a 5k and his shoulder for his First Communion.

I held his proud smile.

9 years.

May 14, 2014.

9 years.

9 years of hope and grace and mercy and days where I wished I had much, much, much more patience, more insight and acceptance.

9 years of stunning speed, of my son becoming more himself and more like me at the same time.

9 years of pushing aside expectations and reservations.

How I wish I had lived more in the moment so many times.

I say this all, in transparency, because it is what it is to be me and be the mommy of Ephraim.

I have not been an image of flowing grace and composure in our house.

I have felt and touched with sadness and frustration and disappointment and excitement and pure love.

I have been angry when I shouldn’t have been and when I should have been.

Ephraim has done irritating things because of his delay and irritating things because he is a kid and sometimes that is what they do. (Yes, I have been irritated and shown it.)

I have yelled at a wearied child. I have wept. I have sang.

I have laughed…the full belly laugh of fun.

I have acted impulsively and regretted…and regretted.

I have cheered.

I have made many, many mistakes. I will make many more.

I am learning. We are learning.

Many face so very much more, and without the network of love and support we have. My prayers to them all.

May the deep sadness that has been upon Ephraim be lifted soon, that he may more fully be able to feel joy in the goodness he brings to the world around him.

May I find the peace to make choices that truly bring him the best chance at health and happiness, whatever the course he chooses and is able to take.

Thank you God for seeing in me the ability to raise such a remarkable boy.