Diagnosis with Thanksgiving

YES, they (seizures) are bringing us to thanksgiving, something that we didn't think was possible but is. Can't quite put it to words........ just yet............... just trying to embrace it and be wrapped by it. "Let the morning bring me word of your unfailing love, (Jesus) for I have put my trust in you. Show me the way to I should go, for I lift up my soul." Psalm 143:8                                                                      ~~~~     I wrote that, just a few shorts weeks ago.......... pre-knowing, I now call it.   Mainly, we have a human diagnosis! A name or knowing what Sophia has been given, and ultimately, what we have been given .  God heard my cry and poured out His GRACE.  Being wrapped and embraced by God these past few weeks I will put into words, with THANKSGIVING, what I couldn't write before.     For 6 years, we have lived with a foreign language in a foreign land.  It has been a difficult path to navigate, for sure.  How do you walk when you don't know where you are going?  We have found, you don't.  You don't walk at all but you run..........full on sprint to Jesus.  Run to the One who saves.  We have searched, prayed, begged, cried, but through it all....... we trusted and ran to God.  Yet, we were without any human answers, left without a diagnosis.  We were left to act on our beliefs in God and TRUST, or the alternative, to live with hopelessness -- total dependence on Him or total dependence on nothing.  Thankfully he gave us faith and we believe in his provision, running to him in our desperation.  Acting in  faith, with the heart of gratitude, to a loving God.  Deep down, always hoping, praying that God would reveal something to help us understand his precious gift in Sophia..... and He did. That day has come. Why do I doubt?  He is Good and Faithful.  His is GOD. Waiting on the Lord's supply and healing in the midst has been our journey. W-A-I-T.  Did you know to "wait", in sign language, is like an invitation?  Hold the left hand, palm up, fingers point up, a little away from the left side of your body. Hold the right hand in the same position, slightly nearer to the body. Wiggle the fingers of both hands. See..... it is active and inviting, it calls for action, a drawing closer, and it calls for palms up, relinquishing.  Open and vulnerable.......... we are called to wait, with a direction of drawing closer.  This is when I cry, and many tears have been shed, in the holding my hands.......... palms up. Psalm 40:1, "I waited patiently for the Lord; he turned to me and heard my cry." When I wait, I'm looking. Looking for something that brings HOPE.   And God, in these past 6 years, has lifted my face. He has lifted my face to fix my eyes on Jesus. He has shown me hope in his unfailing love. Amidst the struggle, HIS loving presence has filled my soul with deep comfort.  I see God!  It brings warmth and light. For God who said, "Let light shine out of darkness, made his light shine in our hearts to give us the light of the knowledge of the glory of God in the face of Christ." 2 Corin. 4:6 First, seeing an end, (diagnosis)......... has a beginning.  At 23 weeks, (during an ultrasound) we heard the words, "IUGR: intrauterine growth restriction."  Our baby, had slowed down in growth and was behind by two weeks..........no explanations or human answers.  We needed wisdom and we started to pray.  We needed God. Psalm 139:5 & 6, "You hem me in ~ behind and before; you have laid your hand upon me.  Such knowledge is too wonderful for me, too lofty for me to attain."    TRUST.  Walk in faith and trust...........these steps came with many tears.  The news remained the same, our baby continued to grow slowly, with some other concerns regarding our baby's heart and brain.  At 38 weeks, Sophia Noelle, was born. 4lbs. 7oz.  Delayed in growth by 4 weeks.  The Dr's first words to me, "No mutations......."  "Huh? Are you kidding me!" was all I could think.  Then I shook his words from my brain.  I was hoping his first words to be........"It's a boy or girl!"  That answer came a few moments later.  "Oh, it's a girl."   And then, the Dr's look of concern.........something that has remained with me. He quickly called for assistance and the room was filled with nurses.   She was frail and not responding to life and so Stuart cut the umbilical cord, instantly.  Before I knew what to do I was surrounded by several nurses, all talking at once, trying to bring me words of information.  Mostly, they were there to assist Sophia.  She didn't cry, nor did I...... there was work to be done.......she was taken to NICU with Stuart and I started to pray. I PRAYed to God for life.  She wasn't breathing.  She needed oxygen.  As quickly as she born, she was wisked away.  Her first breath and cry came from under an oxygen tent.  Stuart was with her and I was left to wait.......   Psalm 139:15b & 16, "When I was woven together in the depths of the earth, your eyes saw my unformed body.  All the days ordained for me were written in your book before one of them came to be." Her name, Sophia Noelle.   Sophia means... wisdom.  She came to bring wisdom and in her little being, little heart, little....... everything, I have seen God's wisdom revealed.   These past few years has kept us praying, waiting, hoping, running and believing in God.  Trusting Him in making crucial decisions, for Sophia, without knowing her diagnosis.  We could only trust HIM.  TRUST.  We are most grateful for his grace.  As we look back, it has been more than sufficient.  Acknowledging His grace, in Christ Jesus, brings us to our knees.............and that is where his peace begins.  "And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4: 7 So, here we are, the day has come......her diagnosis revealed.  Through genetic testing, God showed the Dr's and us, she has a deletion in her 4th chromosome:  Wolf-Hirschhorn Syndrome.  We have another name for it, but that is for another post.  We can see the "why."  After waiting and watching, we see your salvation, God, protecting us.  The answer to the "why," is not in her diagnosis, but it's in Jesus.  He has guarded our hearts and minds by his grace.  His timing is perfect.  We have no regrets, in trusting Him, with the care He provided.  We believe, just like the blind man in John 9:3 that, "this happened so that the work of God might be displayed in her life."  We believe, "your (God's) eyes saw, (Sophia's) unformed body."  In your wisdom, YOU created her inmost being.  YOU knit her together in my womb.  May I PRAISE YOU......... for she is fearfully and wonderfully made. The promises from Psalm 139. Thank you, Jesus, with palms up...........a journey of healing in the midst. A journey of waiting.  Running to God and being in His grace and having hope, Praise be to Him! "I will give you thanks, for you answered me; you have become my salvation." Psalm 118: 21

Prayer, via ~ Ann Voskamp-----Untitled thoughts, via ~ Janet

A Prayer for Bloggers I am no longer my own blogger, but Yours. Refine me with each post how You will, rank me how You will. Put me to service, put me to suffering. Let me be a follower — instead of seeking followers Let me post for You — or be put aside for You, Lifted high, only for You, or brought low, all for You. Do with me and each post whatever You will, because You alone know best. Let me not strive but submit Let me not compete but care Let me not desire hits but holiness Let my blog be full of You, and let it be empty of me. Let me crave all things of You, let me care nothing of this world. Let my words be focus only on the greatest of audiences: You. And You are enough. May I write not for subscribers… but only for Your smile. May my daily affirmation be in the surety of my atonement not the size of my audience. May my identity be in the innumerable graces of Christ, never, God forbid, the numbers of my comments. May the only words that matter in my life not be the ones I write on a screen — but the ones I live with my skin. I freely and heartily yield every sentence, every title, every post, every comment… or no comments… all to Your pleasure and perfect will. My only fame is that I bear your name My only glory is the gift of Your Grace My only readership, Your eyes that seek to and fro to find Make this so. Lord… Yawhew, you alone are my God, not Google Jesus, you alone are my Savior, not sitemeters And Holy Spirit, you alone are my Comforter, not comments So be it, today, yesterday, and every post to come. O glorious and blessed God, Father, Son and Holy Spirit, thou art mine, and I am thine. This is my prayer I have made on earth, over thie keyboard… let it be ratified in heaven. In Jesus’ Name…. Amen. UNTITLED THOUGHTS  Get out of my head and on my tongue the breath God gave me, fills me with the Holy Spirit, to commune with Him in prayer and thanksgiving.   A reminder as I'm watching a seizure take form in Sophia's eyes...........trust God, pray. Outloud. With the power of the Holy Spirit. With thanksgiving. Trust GOD. Another weekend for practice.  "Because he/she loves me,"  says the Lord, "I will rescue him; I will protect him, for he/she acknowledges my name.  He/She will call upon me, and I will answer him/her; I will be with him/her in trouble, I will deliver him/her and honor him/her.  With long life will I satisfy him/her and show him/her my salvation."  Psalm 91: 14-16  Praise be to GOD. Her seizures don't get any easier, they leave aftershocks that Stuart and I must take captive and bring to Christ.  They bring pain and suffering and motivation to have a humble admission of our daily need for Christ and a humble pursuit of his grace.  And, YES, they are bringing us to thanksgiving, something that we didn't think was possible but is.  Can't quite put it to words........ just yet............... just trying to embrace it and be wrapped by it. "Let the morning bring me word of your unfailing love, (Jesus) for I have put my trust in you.  Show me the way to I should go, for I lift up my soul."  Psalm 143: 8 Often times the fixing our eyes on Jesus is the hardest when faced with seizures.  But when I do, I remain in Jesus, the fear of God and admist the struggle HIS loving presence fills my soul with deep comfort that warms and delights.  Be Still.  I see GOD.  That I am thankful. Whatever your circumstances look to Jesus today and be comforted with warmth and delight and praise HIM with thanksgiving............Be blessed.

Craving a Cozy, Crumpled State of Mind

     Fall..... calls us to feather our nest with gatherings, community and a nestling in. 

 A dear friend and I were talking over the phone and after tucking away the summer memories we discovered the time of season is changing and we are craving a cozy, crumpled state of mind.

    Are you there yet?
  
A season....... to offer warmth and a place.  To begin a project, Bible study or carving out time for fellowship.

    Reading in Acts, after Jesus had ascended to the Father, the disciples are found, "joining together constantly in prayer......."  The season of joining to together in prayer, a lovely picture.

I'm ready to receive the invitation of fall and of fellowship, with devotion and prayer.    In fact I'm excited to fall into the Word with friends and dicover the warmth of His love and care and find a cozy crumpled state of mind......together.

    Will you join me?

Holding Life In

Looking back to my last post, (YIKES, May?) I realize how I hold life in and tend to express more inside myself and less outside myself. I thought I had written so much more about our life, here, in these daily moments. Sorry...... I will work harder at encouraging my thoughts to the page and I will celebrate the pondering and waiting that I do, with thanksgiving.... to the page! I will write about the simplicity even just to get it out and see that I had simplicity. Each day try to write a moment of time, here, at Eyes4C-ing. So much has happened that I won't go back for retracing but I will trace my thoughts to the page, today...... in this moment.

Today's journal entry, after encouraging a grief stricken friend........God cares and shows up in those who care.......take care.......receive healing.

God shows up in those who care, a great miracle indeed, offering hope, the hope that only Jesus has given them and the hope that Jesus is giving, through them, to me and others. I see them and I see Him and am grateful. My opportunity is to take care, and receive relationship and heal and I grab hold with determination and faith. Holding life in because He is holding on............HE is holding on to me. In all the phone calls, daily cares and processing of life, I want to remember..... His holding.

Now, back to football practices, phone calls, dinner, family and healing in the midst. His blessings to your moments........and holding LIFE in.

When Disability Hits Home | Joni and Friends

When Disability Hits Home | Joni and Friends

Please take the time to listen and see the message of compassion that Joni and others understand.  Blessings to this day and to those who can see.
Janet

Night, Sickness and Silence

Night, sickness and silence. These are my latest fears. They are most gripping and keep my crying out to Jesus for peace. I most often wish for the morning to come quickly and the bustle of life to surround me. I sometimes look for distraction, (books, t.v, journaling) because I really don't like the silence and the beating of my own heart as I lay awake trembling. I pray desperately for Sophia to be seizure free and for the illness to pass without complications and for Jesus to bring peace over this night and the circumstances. Sickness set in on Sophia, (again) in the form of the common cold. She is having a tough time breathing and it makes her restless and uncomfortable. Low grade fever, I'm left with concern and watch for a seizure, since this is when they seem to appear. She talks in her sleep and I listen to her murmuring. Then she says, very clear, "Papa". I cry and find God reassuring me to close my eyes and trust Him. "Abba, Father," hears my prayer and I understand worry won't change a thing, so I trust Him and He brings me peace and I drift back to sleep. He is whispering in my ear and this time I hear the beating of His heart and I find rest, deep rest, in this night, sickness and silence.

Whew...God's Holding Grace!

     Dad's first post, but not the first time walking in God's strength with the trials of my "Yum-yum."  A week of her throwing up, barely eating, and when she did eat it was negated.  This little one holds very little 'reserves' so her not eating tends to immediately pull down the little reserves she does carry.  God's protection kept her from diving way down as she has done in the past, especially after 5 days of this sickness.  His grace did keep her hydrated thru-out it all, as well.  Thank you Father! 
     Now in the after-math, her hunger has thankfully returned with a nice vengeance.  Mom has also let down after investing everything she had into Sophia's sustenance...letting her guard down and a small sinus cold in.  The brightness of God's spring sunlight has been a welcome encouragement in this post-sickness time.
     I do have to admit that even though Janet bears the majority of the burden of Sophia's care, I am anxiously awaiting the warm weather for a reprieve from the illnesses that bring such in trepidation to Janet & I.  This one makes nine colds/flu's this winter/school season.  Lord willing, next year Sophia will shine as she will have built up all the needed anti-bodies to fight off those "yucky bugs!"  Janet, I know, would like the respite, mentally & physically.
     Thank you again, Lord, for your mighty hand in this little one's life!  Your grace abounds!