Thursday, July 12, 2012

Little Bit

Our Emma girl turned 11 in heaven last week. Last year, on her 10th birthday Eli and I were in Ukraine with Sveta. Emma's 10th birthday in heaven will be one I will never forget...God gave us Sveta on that day. As the years have passed my mind is no longer consumed with the raw, painful images which haunted me so early in the journey of grief. Now...there is a quiet peace in my heart and Emma's laughter fills my mind when I remember her. The Lord has been with me through Emma's life and death and once I began to realize how great His love is for her and for me...I began to heal. I never thought that would be be healed. You never forget...there is always a sting, tears when you least expect them, a yearning to hold your child. It is well though...well with my soul. Laying it all down at His feet...relying totally on Him...there is peace.

I wrote this around the one year mark of Emma (Little Bit) passing away. 

You formed my inmost being; you knit me in my mother's womb...Your eyes foresaw my actions; in your book all are written down; my days were shaped, before one came to be. (Ps. 139:13,16)

A bursting summers sun began to light a new day as our daughter Emma was born into the world against a backdrop of mountains and a sky radiant with deep pink and indigo hues. The beauty of the outside world was lost to us as we met and beheld our newly born daughter. We were introduced to her fiery spirit and catapulted into life with a most amazing child, and on that sultry summers day we became trapped in time, caught in rapture we inhaled joy and absorbed her radiance.

And nearly four years later, during the month of May - with butterflies flourishing the landscape and petals in full bloom, our tiny, exquisite Emma so filled with light, exhaled her last breath and took flight of this world forever. Her scent, laugh and delicate imprint on our soul will forever stay. Our Emma. Her name meant “one who heals” - a tantalizing notion because during her days on earth she seemed so in need of repair, her tiny body refusing to adhere to the rules for a healthy childhood. In the wake of her earthly death, the truth comes and shines its grace all around. She was not to be healed; it was Emma’s presence in our lives that was meant to heal us.

In life and death, she continues to be…our teacher. Our journey with Emma led us through denial, darkness, unquenchable desire to make her healthy, acceptance of her disease, letting go of her and ultimately, a quest for healing and realization of truth. The family we were before Emma no longer exists. Torn apart are the definitions that perpetuated our minds of what was a fulfilled life. Left now is an ever ripening wisdom that living life is not to be defined by others expectations, earthly desires or boundaries. A fulfilled life is not measured by accomplishments, wealth, or the amount of time we spend on earth. The brief flickering of time that was Emma’s life held more truth, meaning and fullness than most ever experience.

Lessons learned are all we can take from her flight in and out of our life. She left us as quietly and quickly a single flame is blown out. The glowing aura of her physical presence remained as her last breath was exhaled. She was three. “She is gone, she is gone” my voice repeated and echoed through our home. The ebb and flow of life and death was fulfilled and glorified. Tiny glimmers of reality peeking through the dark cocoon of our shock. She is gone.

After she left it became quiet in our home. At times the rift between our reality and the world’s ticking of time has become filled with such intensity it threatens to rip us apart from humanity. And yet, we survive. We absorb the thrilling laughter of our other children; we notice the warm rays of sunshine that play upon furniture in Emma’s room, still filled with HER things. We are gingerly stepping through a doorway that must be the threshold to…the rest of the journey. The future is filled with uncertainty but as the years pass I can see we are kicking at the darkness, and the future must now bleed light.

Light comes. It is the subtle, gentle caress of awareness that Emma’s spirit was shaped and filled with God’s grace. The feeling of contentment, fulfillment, and indescribable emotion when holding her was simply, the Lord infused through her.

Basked in truth while searching for relief from the searing pain we reflect on her life, and her amazing journey. Emma was beautifully and wonderfully made. Her genetic fabric was carefully chosen well before she began her life on earth. She was placed into our family and lovingly cared for. Her syndrome did not debilitate our family but instead it empowered us. We continue to be amazed by her and by her work here on earth. Our family now travels on the journey without her physical presence but we feel her spirit, and her melodic laughter resounds around us. We keep her memory alive and woven securely into our family’s fabric. Eli and I have not “lost” a child – we will always have three. We will talk about her, leave her pictures and favorite things in our home. Her blanket and pillow will forever grace our bedroom. We will remind Peyton and Paige that Emma is always their sister.

Throughout the rest of my life I know our family will eternally be shaped around her short presence in our lives.

Thank you Emma for the love, the lessons, and patience you had for each person blessed to have met and beheld you. It was never a sacrifice to give all to you, and absorb all you had to give back. We know well what you were and why you came and we are humbled to have been a part of your life.

For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. (2 Corinthians 5)

Monday, June 11, 2012

Sveta's Big Birthday Post..Finally!

You all want pictures right? Not my horrid commentary? But...for everyone new to our year ago Eli and I traveled across the Atlantic to adopt our little girl, Svetlana. We didn't know what to expect. I can't even say we were brave. We just jumped. And prayed. And prayed. And prayed. 
God yelled at us and we listened. 
We followed where He said to GO.
(We argued a LOT with God about this)
But ultimately, we obeyed. Listened. Humbled. Said yes.
Svetlana.Her history is hers to tell, all we know she will know. It's all hers to tell, if she chooses.

We call her many things now..Yetta. SJ. Setta Tetta. Sazetta. Goofball. Baby Gump. Chipmunk.Sveta Josie. We also call her loved, cherished, beloved, daughter, sister and we are honored to be her family. People say she is lucky. We feel...WE are the lucky ones. Sveta Josie turned our lives upside down, showed us a side of our Father in Heaven we never would have known, had it not been for her.

Adoption. Changes. Everything. 

It's not about us. Ever. 

Sveta came into our family like she has always been a part of it. Like she knew she belonged and we knew she was meant to be here. Funny how God does that.

Last weekend we had the JOY of celebrating Sveta's fifth "first" birthday at home! There was a "matroyshka" theme...why..because Sveta didn't know what in the heck a birthday was yet (imagine turning five and having no clue what a birthday or party to celebrate YOU is?). So, I came up with the theme. A Matryoshka is a Russian/Ukranian nesting doll. It has great meaning in their culture. 
And, its cute.Basically, that was my motivation. Cute.

So, for weeks we prepared. For a Matroyshka theme birthday. (next year..she can choose...Dora...Olivia..whatever...this year, Matroyshka!)

Then...the BIG day came!! Chubby cheeks turned FIVE!! (she still thinks her cheeks are called "chubbys" and doesn't know what the heck a cheek is)
Best Big Brother EVER. He got me a baby alive!!!!! But really..I just like to hug him!
A Dream Lites????Really?? THIS was the ONE thing I have been asking for you crazy family!!!

NO WAY. A CAR also???

Happy Fifth Sweet Girl...

 Her first birthday celebration. Look at that little face. !!!!!!

The sun was in her eyes. And she is quite dramatic! looks painful to smile.

Birthdays are FUN!!!
Really? The Ice Cream Guy shows up at my birthday????!!!!

Oh my goodness. I am tired. Will every birthday be like this??
Happy Birthday Sveta Josie...You are amazing, beautiful,special. And so much more. 

You are our little girl.

Monday, May 28, 2012

A Year Ago...

Can't believe a year ago today I was writing about Sveta turning four, not knowing when we would ever meet her. (Little did I know we would get our invitation to travel just a few days later!!)

So EXCITED that tomorrow we get to celebrate her 5th birthday with her in our arms! 

May 28, 2011...

Guess Who's...

Turning FOUR sometime soon???
We can't wait to meet you Little One...
To make the biggest birthday cake ever.
Just for YOU!
Preparations for welcoming you into your family are already taking place...
Little matching outfits...
I had to buy them...the purple is for Little probably won't even fit..but I went a little wonky in Target one day. Paige was thrilled and keeps wanting to get more matching outfits. We have to wait though until we know better what Little One's size is.

Other news...literally...the news contacted us to do a "Focus on Faith" segment. We pray this will help bring awareness to adoption and most importantly bring glory to the Lord. He is so good, even when heartache, destruction and things that just don't make sense rain down.

Feeling peace today, knowing I don't have to have all the answers, don't have to know the master plan, don't have to be in the driver's seat.
He's got it.
And our Father is FOR us.

"May the Lord bless you and keep you: May the Lord make His face shine upon you, and be gracious unto you: May the Lord lift up his countenance upon you and give you peace."

Happy Birthday Little One.
Our thoughts, prayers and love are already surrounding your sweet little soul.
Fast forward a year...Paige and Sveta wearing the same skirts I wrote about.

Happy little girls. Sveta is doing amazing and we can't imagine our lives without her.

Adoption has changed our lives.

Tomorrow, we get to celebrate this little girl's blessed birthday. Praise God.

Tuesday, May 22, 2012

Emma's Homecoming

Seven years ago weak from pneumonia and her body exhausted from the affects of Cockayne Syndrome, our little girl danced into the arms of Jesus. Many of my family and friends from Texas made the journey to Alabama for Emma's funeral. Once my Uncle Jerry returned home to Texas, after Emma's funeral, he says the Lord awoke him in the middle of the night. He sat down with pen and paper, words poured out along with a flood of tears and insight into God's amazing love for Emma as he wrote something very special for our special little girl. I have always cherished his words...Emma Catherine (Little Bit) taught us love doesn't look at a person's abilities or "dis"abilities, differences or capabilities - but to look at people on the inside, through God's eyes.

Tribute to Emma
By Jerry McDonald

Emma was sent here from above by her Creator and Lord, like a little lamb, innocent, sinless without a spot or blemish just as the One who sent her. She was handpicked and predestined for a mission on this earth, and she came prepared to do that job.
She came to teach, to teach everyone who would listen about hope, faith and love.
The Bible says love is the greatest of these.
Emma wasn't a very strong little girl; she didn't have the abilities of a normal child. Walking was something Emma never did; she didn't have to, because Love carried her anywhere and everywhere she needed to go. You see, being so small and tiny it was easy for anyone to carry her. Her little arms and hands were weak also, but that really didn't matter much. It only took a little touch from her to melt the coldest heart.
Hearing was another little problem, but again it didn't matter. Hearing may be necessary for learning but not for teaching and teaching is what Emma did.
Speaking was also something Emma couldn't do but it really didn't matter at all. 
She got her message across just fine.
Many people learned a lot from this child.
Her message was about Hope, Faith and Love.
Emma's hope was not of this world. This earth and all things in it will pass away one day. 
Emma's Hope was in her Lord and Savior and eternal in the Heavens.
Her faith was in His promises, that whoever calls upon the name of the Lord will be saved.
There is no doubt about Emma's salvation.
Her love was the tool she use to teach with during her short stay with us.
Some three years or so, close to the same amount of time as her Lord's ministry.
Emma's eyesight wasn't that great...but she had a crystal clear view of her master's plan.
She knew what to do and when to do it. 
She also knew when it was time to leave.
When her word was over she would return to the one who sent her.
Her homecoming was different though...she returns in a perfect little body, running to the outstretched arms of her Heavenly Father. 
He gently picks her up, wraps her in a blanket of his Almighty amazing grace and says,
"My dear little Emma. Welcome HOME, my good and faithful little servant. Thank you for doing such a remarkable job. Thank you so much, my little one."

A remarkable job indeed, little Emma.

Emma's tiny hand in her daddy's

Peyton, Paige and Emma

 She loved school and being the center of attention!

Love you sweet girl. Thank you for everything you taught us....

Saturday, May 19, 2012

Our Life..Seven Years Ago and Today

  My blog post from last May's a year later I am reflecting on where we were a year ago and what our family looked like now seven years ago.
May 19, 2011 - Six years ago life looked very different. Our daughter, Emma, was weak from nearly four years of battling Cockayne Syndrome and she hovered between two worlds...closer to Heaven than we could ever imagine on this day, six years ago. 
 Six weeks before Emma died she developed pneumonia.  It was treated with high doses of antibiotics, breathing treatments and medications to make her more comfortable.  Hospice came in several times a week to check on her.   We prayed the antibiotics she was receiving at home would beat the infection.  After nearly two weeks she did improve.  Although she was weak and her immune system had become virtually non-existent, she managed to smile again and laugh for us.  During the time she was sick with pneumonia I did much reflection on what life was like when you have a terminally ill child.  We were faced with the unavoidable fact she may not improve. 
She could have died from that first pneumonia, a foreshadowing of what was to come. We didn’t have a timeline or insight into what would happen.  The only thing we could rely on was guidance from God and our trust in His plan.
Our daily life, our "normal", was a myriad of contradiction.  Oxygen tanks were placed throughout our home with tubing running all over the floors and down the stairs, a baby bed was kept downstairs to keep Emma comfortable during the day and so we could constantly monitor her oxygen levels and condition. Lining the oxygen tanks and wiring were Little People toys, pacifiers, and GI Joe toys for Peyton and Paige.  Paige took her first steps as she gingerly stepped over oxygen tank tubing.   Emma was on 24-hour continuous feedings through her feeding tube and we had to keep track of her pulse/ox stats on an hourly schedule.  I kept up with multiple medications, feedings, and breathing treatments taped to kitchen cabinets on a nursing chart.  Along with caring for Emma there was the coordination of ordering medical supplies, prescriptions, authorizations for medical equipment, keeping in touch with the insurance case manager, hospice nurses, social workers, a child counselor for Peyton and trying to make sure Peyton and Paige’s emotional well being was cared for.  In addition to caring for Emma, Peyton, and little Paige, the local newspaper was following our family doing a story on life with a terminally ill child.  Every week the reporter kept in contact with me about what was going on in our lives.  He shadowed our family as he gathered information for the story.  Our hope when contacting the media was to initially draw attention to Cockayne syndrome.  But as the months wore on and Emma declined I began to realize the story was evolving into our journey, our faith, and the depths of our character.  A seemingly simple letter to the newspaper asking to enlighten the community on a rare syndrome became a window for the world to peer into our lives and how we managed to maintain a positive outlook. 
In the midst of daily life, Eli and I tried to make everything easier for Peyton and Paige by spending one on one time with each one every week.  We would laugh a lot, act silly with our kids and try to just enjoy each other.  Our life was unpredictable because we never knew what would happen to Emma on a daily basis.  Plans had to be changed constantly.  I was rarely able to attend field trips for Peyton’s school.  At times sadness would sink in when I felt others were judging me; the kind of friend I was able to be at the time, my children’s sometimes outbursts an obvious sign of their need for more attention.  Then I would think to myself “are these people walking in my shoes?”  The people who judged us didn’t have a clue what it was like to be the parent of a terminally ill child.   Most of all Eli and I felt sadness for the people who seemed to view our life as a tragedy.  Each day we were filled with joy, hope, and knew well the gift we had been given.
Emma taught each of us unconditional love – each time she would decline, would require a new medication, oxygen, and eventually hospice we would accept it, and embrace it just as we embraced Emma. It was never a sacrifice to care for her and I would have taken care of her the rest of my life, my “little bit” like a koala bear always in my arms.  As my faith has been nourished, grown and deepened over the years the Lord has shown me through His grace, Truth. And Truth knows something else; it was Emma who was carrying me, teaching me through her life about Unconditional love.
Our life..six years ago.
 Life was pushing Emma close to Paige every morning while she ate breakfast because...
Sisters wanted to hold hands.
Life was big eyed babies...
Who were always into something quite messy.
Life was Spider Man loving his sister no matter how many wires there were to manage. Life wasn't a diagnosis, a prognosis, a genetic was loving Emma and to Peyton she was simply
"My sister..Emma"
Life was three babies crowding around mommy.
It was a myriad of contradiction, difficult to balance two worlds.
But I would do it all over again. This is Peyton and Paige on May 19th, 2005.
 Two children outside playing in the sun while inside Emma held on, surrounded by friends, family, hospice...waiting for us to all say goodbye.
Three days later she passed away, in my arms, wrapped in her pink blanket. Her soul soaring into Heaven.
Seeing in full color, taking her first steps in Heaven. What a glorious homecoming!
But we were left in shock, almost unable to know how to put one foot in front of the other.
Life was not wanting to let go but knowing ultimately...saying "It's okay to Go" was what Emma needed from us the most.
Hope never left and we feel Emma with us always.
Life went on, but with two babies instead of three.
Emma's smile will forever stay with us and she kept her sweet smile to the end.
Our family looks different now. If you didn't know us six years ago you would never have an idea of what life looked like then. We have formed bonds which have grown stronger over time, faith in God that has sustained us, Hope in the future, laughter which explodes throughout the house, thankful for the short time God gave us Emma and for the lessons He showed us through her life.

Her greatest gift to us was that the Lord showed us a glimpse of Him, and his overflowing Grace through her life.

We look forward to the day when once again there will be three children in our home, making memories, another child to share the love of Christ with and teach that in every situation
and there is
Keep looking UPWARD Little One
And now today, May 19, 2012, God has once again grown our family through faith in Him. Once we were a family of two, with a crazy dog, and cat. Then we became a family of three with our Peyton bug. God gave us Emma within 18 months of having Peyton and we became a family of four. Paige came two years later..amazingly we became a family of FIVE in four years. Then, we stumbled along for a while as a family of four again. We mourned, rejoiced, healed, all the while holding onto God's promise we will be reunited with Emma. 
Now, today we are again a family of five. The road has been filled with twists, turns, tears, laughter, learning to let go, lay it down, humble ourselves, strive for a teachable spirit and above all...obedience to our Father in Heaven.
It hasn't always been easy or made sense but life seven years ago, one year ago, and reason to celebrate.

(life is still pretty messy)
(growing out