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Beautiful Dancer, My Daughter

Blue is for Autism Awareness Day 2 April 2013

Katyana, age 14, Asperger’s Disorder, Christian, Brilliant, Learner, Daughter, Sister, Knitter, Performer, Writer, Friend.

Posted on: March 28, 2013

My son. Childhood disease. An imperfect world. I love that God speaks through our children; those with a voice and those too young or too sick to have a voice. Prayers for Mattie and all the children who are are walking through the hard journey of childhood disease and their families that care for them. And I am praying for a heart like my son’s heart.

From the Heart

I’m in awe of the number of people Mattie has impacted in his first 2 1/2 years of life. People from all walks of life. Young and old. Near and far. Friends, family and strangers.

Mattie has a way of drawing you in and grabbing a little piece of your heart. He has made his mark. Delivered joy. Poured out sweet love on so many.

When I get emails, messages, or mail from children who pray for Mattie, my heart is just leaps. Precious, faith-filled hearts, loving so beautifully.

Our far away friend Ethan is one of those dear children who has faithfully prayer for Mattie from the very beginning.

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Ethan’s is witty, charming, and full of life. He too is a survivor, a fighter, a brave warrior.

He sent this to Mattie in the mail yesterday.

Sometimes love comes wrapped in a cardboard box from Amazon.

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Yes, that is…

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Katyana is my lyrical song writer. At the age of eight at her Chrismation and as is tradition, each Orthodox person takes on the name of a saint. Katyana’s Patroness Saint is St. Kassia whom she chose at baptism. St. Kassia was the first female hymnographer and my Katyana loves writing songs to the Heavens. It was a perfect match.

Katyana, age 8.

Katyana, age 8.

Katyana has written many songs that fill many notebooks through the years. However, this one just grabbed my heart. She’s fourteen. I love how she has tied the stories of the Bible together. I love that in her spare time this is what she chooses to do. I am humbled as well. God speaks ever so strongly through our children.

“He is Watching Over Us” by Katyana, age 14. © Published with Permission.

Everybody has dreams. They can be sweet or scary but the Lord is shining His Light upon us. When you are scared or having a hard life, He will be there. No matter what. No matter what. No matter what.

He will be there for you ’cause He is your Nightlight, your Shining Star. He is our Savior. He is here for us everyday and night. Oh, He is our Nightlight and our Shining Star. He can be everywhere at once because He is our King of Kings and Lord of Lords. He created us and everything. He is in our hearts, in our hearts.

He is in our lives and dreams ’cause He is our Shining Star, our Nightlight. He is our Father in heaven. He is the Lamb, the Light and Truth. So say your prayers every day and every night because he is listening to all of your prayers. He will be there, be there for you.

When you are scared, He knows your dreams are scary and sweet they will be. They will be good ones and bad ones. The Lion’s Den with Daniel. They were tamed by Daniel’s prayer to God. The lost lamb was found by the Shepherd. We are the Lord’s Lambs and He is our Shepherd. The Lord is there for you and for me. He will help you and is there right next to you. You don’t see Him but he sees you.

He is your Shining Star, your Nightlight. He sends your guardian angels to watch over you. Watch over you, He will. Yes, He will be there for you day and night. He created the earth, the sun, the moon, the sky and the stars. He made us in His own likeness.

He is the King of Kings. He is the Lord. He is Christ. He is the Father, the Son, and the Holy Spirit. He is our Nightlight, our Shining Star. He will be watching us, watching us, night and day. He is our Shepherd. We are His lambs. We are His children. He loves all of us all over the world. He loves the dark and the white sheep. The stars are shining bright tonight.

The Lord is listening to my prayer. He hears my confessions. He hears me ask for forgiveness. He gave us the breath of life. He sent man down on earth who named every animal ever made down in the Garden of Eden. He told man don’t ever eat from the tree of good and evil. That tree was the tree of knowledge. Eve tempted Adam to eat the fruit. God cast man out and put a flaming sword and an angel to protect the Tree of Life.

Man worked hard and long. Later on, God gave Moses the Ten Commandments on stone tablets to give to the people of Israel. Moses led the people to the Promised Land. This is something to remember. God always keeps His promises. Look at the sky to see His Promise. In the rainbow He has promised to never flood the earth again. And God’s promises are always kept.

Later on, the Lord told Mary she was going to have a son. He told her not to be afraid. Then He told Joseph the one he was going to marry and to name their son Emmanuel. God was going to be with us on earth. When Jesus was wrapped up in swaddling clothes, He was laid in a manger for there was no room in the inn. So, remember He is our Christ. It doesn’t matter where we are born. He is our Christ. He died for us on the cross. That cross is broken and in pieces all over the earth. He is everywhere.

He is our Shining Light and our Nightlight. So say your prayers everyday and every night. He knows that we love Him ’cause He lives in us. We are His temple. He is our King, Lord, Father, Son, and Holy Spirit. He loves us. We love Him. He is our Creator. He is our Nightlight. He is our Shining Star.

He is the Lamb. He is watching over us day and night. He is watching from the stars. He is watching from the heavens. He is watching from the sun. He is watching from the moon. He is watching, watching, watching. He is watching over us everyday and every night. He is our Nightlight, our Shining Star. He’s everywhere.

He helped Joshua fight the battle of Jericho. He helped David defeat the giant with just five pepples and his sling. David was just a shepherd boy. Mary was a virgin. Mary gave birth to Jesus and he laid there in the manger. He loves us all.

Simeon wanted to see Jesus before he died. Simeon’s prayer was answered by the Lord. God is watching us. God is watching over us. God loves us. He is our Savior. He is King. He is Lord. He is the Lamb. He is the Shepherd. He is watching over us.

St. Patrick’s Breastplate

I bind unto myself today
The strong Name of the Trinity,
By invocation of the same,
The Three in One and One in Three.

I bind this day to myself forever.

By power of faith, Christ’s incarnation;
His baptism in the Jordan river;
His death on Cross for my salvation;
His bursting from the spicèd tomb;
His riding up the heavenly way;
His coming at the day of doom;*
I bind unto myself today.

I bind unto myself the power
Of the great love of the cherubim;
The sweet ‘well done’ in judgment hour,
The service of the seraphim,
Confessors’ faith, Apostles’ word,
The Patriarchs’ prayers, the Prophets’ scrolls,
All good deeds done unto the Lord,
And purity of virgin souls.

I bind unto myself today
The virtues of the starlit heaven,
The glorious sun’s life-giving ray,
The whiteness of the moon at even,
The flashing of the lightning free,
The whirling wind’s tempestuous shocks,
The stable earth, the deep salt sea,
Around the old eternal rocks.

His heavenly host to be my guard.

Against the demon snares of sin,
The vice that gives temptation force,
The natural lusts that war within,
The hostile men that mar my course;
Or few or many, far or nigh,
In every place and in all hours,
Against their fierce hostility,
I bind to myself these holy powers.

Against all Satan’s spells and wiles,
Against false words of heresy,
Against the knowledge that defiles,
Against the heart’s idolatry,
Against the wizard’s evil craft,
Against the death wound and the burning,
The choking wave and the poisoned shaft,
Protect me, Christ, till Thy returning.

Christ be with me, Christ within me,
Christ behind me, Christ before me,
Christ beside me, Christ to win me,
Christ to comfort and restore me.
Christ beneath me, Christ above me,
Christ in quiet, Christ in danger,
Christ in hearts of all that love me,
Christ in mouth of friend and stranger.

I bind unto myself the Name,
The strong Name of the Trinity;
By invocation of the same.
The Three in One, and One in Three,
Of Whom all nature hath creation,
Eternal Father, Spirit, Word:
Praise to the Lord of my salvation,
Salvation is of Christ the Lord.

This is What Eleven Years Looks Like.

Saturday, March 9, 2002: The kids and I spent our first entire day together as a family of four.

Saturday, March 9, 2013: The kids and I spent our day being extras in an Independent Feature Film. It was fun. We can’t wait to do it again.

This is what eleven years looks like. It’s quite amazing.

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The first longer and more detailed part of this story is here.

I started a journey in June 2010.  If I had been given any foreknowledge of the outcome, I may have chosen differently. However, hindsight is golden. I wouldn’t trade the months between June 2010 and March 2011. If I had, I would have missed one amazing journey with one of the people I loved most in the world.

I met my friend, Jennifer, through the activities of our children in the fall of 2004. Her youngest daughter and my youngest son were both two-year-old gymnastic buddies and then saw each other again while their big sisters took dance at the same studio. As the children grew older, many of their activities overlapped and Jennifer and I would be able to leave for our “coffee” meetings, where we would escape for an hour or two discussing adult issues. She would say she was my hero in that I was raising three children as a single parent as my children were mine through adoption. I told her she had it wrong. Jennifer was the most loving, faithful, and tactful friend I had ever met. She never knew a stranger and saw the good in everyone. She challenged my children and me to look beyond the surfaces of those we encountered.

 We played together during the summer as we both loved involving our children in our fun. We’d swim all day and eat Mexican food at night. We celebrated some holidays together. I knew her extended family; she knew mine. She met my lifelong desire to have a sister and I loved her like she was one.

In March 2008, she found a lump in her breast while on a cruise over spring break with her husband and daughters. She came back and was diagnosed with Breast Cancer. I tried cheering her on as she went through the chemotherapy, the hair loss, the intense pain. So many times, I wished I could carry her burdens, even for a day, just so she could sleep peacefully. But, that was not mine to carry.

Jennifer thought she went in remission in the summer of 2009 but a few months later she underwent a body scan that had shown the cancer had spread to her lymph nodes. At this time, the race was on to find a clinical trial because her new diagnosis was “stage IV metastatic breast cancer, chemo resistant, Triple Negative.” The cancer had also spread to her lymph nodes. I will never forget the phone call I had with her husband who told me that the doctor was giving her “six months” to live. I truly felt that a part of me had died that day.

Because our friendship started before cancer, cancer didn’t define our friendship; although during the cancer days, I did encounter friends who were not supportive or understanding of the severity of her diagnosis. However, much blessed, other friends stepped forward and asked how they could help me so I could help Jennifer. So, twice a week, my kids were farmed out to friends’ homes where they could continue their school projects and I could focus on Jennifer. The kids said repeatedly to me that they loved Jennifer and were willing and wanting to help her by having me drive her back and forth to Nashville (177 miles one way) for a clinical trial. I loved my kids more at that moment for putting themselves in the shoes of someone else and demonstrating to me what amazing and loyal children I have with whom I am so blessed.

We started our weekly sojourns to Nashville twice a week; sometimes necessity caused us to spend the night. My support in finding childcare for my children was overwhelming positive. My kids were happy in each place they stayed and we only had one major incident while Jennifer and I were in Nashville. My son, age 8 at the time, had a run in with a radio controlled car at my friend’s house. The antennae pushed into his skin and through some nerves. I received the emergency phone call just as we were entering the Sarah Cannon Cancer Center; three hours away from Knoxville. I called a few numbers but no one was answering so I called my priest, who lives in another town, and asked if he knew anyone who could help meet my son at the Emergency Room as my friend who was caring for my son had five children. Thankfully, my priest arrived and was able to take over Ethan’s care. Ethan’s anxiety left when Father Stephen jokingly responded to Ethan, “Well, Ethan, you certainly give new meaning to the word “Toe Truck”.” Thank goodness for humor. Ethan had the adventure of a lifetime comparing “war wounds” with his priest. To this day, Ethan only saw that day as adventure; not as tragedy.

After the first crisis, I felt that there was a “village” that was left behind to care for my kids and that I was reassured and had a Divine Confirmation that I was the one to continue walking this journey with Jennifer.

By fall, Jennifer was noticeably getting sicker and she failed the first trial. She qualified for a new trial and trust me, those were some of the loudest cheers of thanks that hospital had ever heard. We felt it was a sign; she had never qualified for a trial so quickly. We celebrated that night, just enjoying being in the moment. So much of the journey taught me to make the most of every moment because I certainly did not want to miss one.

Well, I did miss one. And if I let it, I would still beat myself up for missing it. It was her last treatment in December 2010. It was an overnight Nashville trip. I didn’t know then but it was our last Nashville trip. Jennifer had an early body and brain scan and we had stayed up way too late playing a random host of games like Uno, Battleship, and Sorry. If you knew us, you would know that we never went to any doctor appointments or infusions without games and entertainment magazines (IE: People, Inside Edition, etc.). It was both of our escape from reality. I was worn out but Jennifer wanted to keep playing. I could tell she was really worried about the next day and I wanted to keep playing games to keep her distracted.

Well, to the moment I missed. I had to get Jennifer to the hospital for her Body Scan by 630 a.m and I was exhausted from so little sleep. I had to go back to the hotel and sign out and pack up our things but while doing all, I laid on the bed for a ten minute quick nap and woke up 90 minutes later. The guilt cut like a knife through the core of my existence. I frantically packed all of our bags, loaded the car, and found Jennifer sitting by herself waiting in anxious anticipation for the results. The guilt I felt for letting down this friend I loved so deeply hurt me profoundly. And I wouldn’t understand how profound the hurt was until after her death.

Jennifer, being Jennifer, told me not to worry about it; that she was fine. I tried to act fine but I had to leave the infusion room in tears. I think it was all catching up to me. I couldn’t always be there. She was going to die and I wouldn’t be able to stop it. It was a quiet trip home that night. She was really tired and I was afraid to speak for fear tears would accompany my speech. This was her last time in Nashville for treatment. She subsequently failed the new trial and before she began any other new trial, she needed radiation treatments for the lung that was affecting her breathing.

She came over to my home, which was her last time to visit my home, that January of 2011. I served her favorite meal, my original taco salad that she loved so much. The kids played and we talked and watched the kids be silly. It was also the last time that her children would come to our house.

On the second of February, Jennifer called me and told me (taking a long time as she would cry from time to time in her message) that there wasn’t much hope and all that could be done could be completed in Knoxville. I visited her once in February. We made tentative plans to finish scrapbooks for the girls. But those plans never went any further. She began growing sicker by the day. The next time I saw my dear friend, my adopted sister friend, was on her death bed, on 29 March 2011, a few hours before she passed from this life. A friend had driven me to the hospital so I could stay safe (I was too emotional to drive). I just sat with Jennifer in the hospital, holding her hand. She was unconscious but I talked and talked about her dreams for her children and what she meant to my family and me. My priest had come to be at the hospital and he made the comment, “How could someone who was dying look so healthy?” It was so true. She was beautiful in life and in death. I finally said my goodbye. I didn’t want to leave but it was time. I was driven back home by a friend. I told the kids. My kids surpassed any expectation I had. They allowed me a place to cry and cry. They rubbed my back as I lay in the fetal position on the bed. I eventually fell asleep. At 6:09 p.m., I received the call from Jennifer’s husband that Jennifer had passed peacefully with each of her children by her side. An entire new bucket of tears just fell from my eyes. I felt that the depths of my soul was crying out. It was so emotionally and physically painful. The kids stayed around me and cried with me.

The following days, it seemed as Jennifer spoke in many different ways. At her graveside service, which was on a warm day, right as the Priest was finishing his prayer, the wind out of nowhere suddenly came around each of us and swirled; giving each person in attendance a symbolic memory of how lively Jennifer was before death and even in eternity.

I grieved so much. After so many nights of crying myself to sleep and crying while I was sleeping, I suddenly woke up one morning with a new vision. The story of Jesus and his Disciples came to my mind when they fell asleep on the night that Christ needed them most; while He was in the Garden of Gethsemane. I was carrying such guilt for not being there for Jennifer on that final day we were together in Nashville. But I heard Jennifer’s voice remind me that it was Christ that never left her alone. That only HE could be with her for now and for all Eternity and that Eternity was all she needed.

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