Trusting God is the only answer!


As we near three months of seizure free life we were given some unexpected news today during our appointment with the Genetics doctor.  Just last night I was sharing with my Pastor by email the many examples of God’s faithfulness:

I’ve been reflecting on all the Lord has been doing in our family.  In all the years I dreamt of growing up and having children I never thought I would find myself up against such scary things.  Evelyn, by the Grace of God and ONLY by the Grace of God has been seizure free now for nearly three months.  When I think back to that evening, the night that my life changed, I can barely think upon it – an ache enters my heart.  The dreams and aspirations we have for our children and the feeling that all of it was being pulled from between my fingers, no matter how hard I grasped…  The Lord has brought me to such a place of reliance on Him.  My own flesh has made it very clear how very much we are in need of our savior!  With each passing week we see triumph and trials together.  This bitter sweet existence can be trying emotionally, but this is where I cling to Jesus and His promises for our lives.  The Holy Spirit spoke through me as I wrote Evelyn a letter a few months back and as we are facing another giant with Evelyn’s latest diagnosis I am reminding myself of God’s promise to me to heal her.  That promise stands for Infantile Spasms, it stands for Neutropenia and it stands for anything else that may come her way.  I cling to this promise and to His faithfulness to which He has already shown us over and over again.  He was faithful to bring us to the right doctor at the right time.  He was faithful in the generosity of His people as our church reached out and held us in the palm of their hands along with Christ.  He was faithful to heal her Epilepsy.  For six weeks following Evelyn’s start on Vigabatrin, the epilepsy medication used to treat her infantile spasms, Evelyn would not eat any solid food – at all.  It was so scary, the very thing that would sustain her, she would not take.  Is this not a picture of our walk with the Lord and our constant battle with the flesh?  After much work with the therapist she told me to back off of the feeding attempts and to not feed Evie any solid foods for at least a week.  A few days into this new plan I heard from the Lord.  He told me to go into the kitchen, place her in her high chair, fill her bowl with food and just say the name Jesus!  I sat in front of my baby girl, who had not taken so much as a bite from a spoon in over six weeks and I said the word Jesus.  I said it again, and again, nearly 50 times I would say – all the while holding the spoon about 1 inch from Evelyn’s mouth.  She didn’t hit the spoon, she didn’t grab at it, she peacefully stared at me as I spoke the name of her Savior.  After about 50 times of me calling out the name of Jesus, she leaned forward, opened her mouth and took a giant bite of food.  then another, then another… She has now been eating, three meals a day since that day and it has been two weeks.  HE IS FAITHFUL!

And even after the news of this day, He is still faithful!

The new ‘news’:
The Doctor explained that 95% of our chromosomes are gibberish to the scientific world and only 5% of our chromosomes are actually responsible for the production of our genes.  Of all the people who have deletions, 97% of these people have deletions within the 95% of chromosomes that are gibberish (if that makes sense…).  So, what this means, is that 3% of people who have a deletion, have the deletion somewhere inside of the 5% of chromosomes that are responsible for creating our genes.   Evelyn is in this small category and her deletion is within the chromosomes that create our genes.  This test type has not been around forever so there are likely more poeple than have been reported, however it is a seriously rare deletion, her specific deletion has only been found in 6 other people in all the world.  Of these six people, none of them have a clean bill of health having a mix of medical issues that include seizures, heart abnormalities / defects, kidney issues, and mental retardation.  With such a small set of people with this deletion, and no common thread amongst them, she said she would have no way to predict how this deletion will affect / manifest in Evelyn.

A dear friend of mine reminded me today of Gideon, in the Bible, as he prepared for battle.  He was trusting in what he could see rather than trusting in what the Lord could do.  He was walking by sight, not by faith.  This is what the Lord did to ensure that Gideon knew the Lord goes before us, He wins our battles, He gets the glory!!

(Judges 7:1-8)Early in the morning, Jerub-Baal (that is, Gideon) and all his men camped at the spring of Harod. The camp of Midian was north of them in the valley near the hill of Moreh. The LORD said to Gideon, “You have too many men for me to deliver Midian into their hands. In order that Israel may not boast against me that her own strength has saved her, announce now to the people, ‘Anyone who trembles with fear may turn back and leave Mount Gilead.’” So twenty-two thousand men left, while ten thousand remained.
But the LORD said to Gideon, “There are still too many men. Take them down to the water, and I will sift them for you there. If I say, ‘This one shall go with you,’ he shall go; but if I say, ‘This one shall not go with you,’ he shall not go.” So Gideon took the men down to the water. There the LORD told him, “Separate those who lap the water with their tongues like a dog from those who kneel down to drink.” Three hundred men lapped with their hands to their mouths. All the rest got down on their knees to drink. The LORD said to Gideon, “With the three hundred men that lapped I will save you and give the Midianites into your hands. Let all the other men go, each to his own place.” So Gideon sent the rest of the Israelites to their tents but kept the three hundred, who took over the provisions and trumpets of the others.

With unthinkable odds the Lord went on to win this battle for Gideon and his men and no one could doubt that the credit was anyone’s but the Lord’s!

Evelyn is surpassing unthinkable odds each day…  Approximately 1 in 4500 babies get Infantile Spasms.  I was just reading a few moments ago that the estimates are that 1 in 100,000 people have Neutropenia.  And now this… 6 in over 6 billion!

Surely my God is preparing us for great victory and surely the credit will all be to Him.  Glory be to God!  I don’t know what Evelyn’s life will look like, I don’t know the trials we will face – the answer = Jesus!  God will equip our family each step of the way, as He already has.

Thank you all for your continued prayers.  Evelyn’s numbers for her Neutrophil count are still severely low, nearing zero, and she has no immune system to fight anything.  We are praying for a miraculous healing!  In the coming weeks they are testing our (Todd and I) blood for deletions, Evelyn will have an echo cardiogram to rule out any heart abnormalities and a renal ultrasound to ensure her kidneys are functioning properly.  We are praying and believing for a good report!  After all those tests we will meet again with the Geneticist.

She is so truly special, an appreciation for all my children is rising up and a I have a love for them that is so unconditional!  The Lord gives me just enough light for the step I’m on!  I am trusting Him for our tomorrows.

This past week I came upon a bracelet that said this:  The journey of a thousand miles begins with a single step.  So very true isn’t it…  As the Lord leads, we are the ones that  must take that first step of faith!

In His infinite Love!
-Jill

(Judges 7:1-8)Early in the morning, Jerub-Baal (that is, Gideon) and all his men camped at the spring of Harod. The camp of Midian was north of them in the valley near the hill of Moreh. The LORD said to Gideon, “You have too many men for me to deliver Midian into their hands. In order that Israel may not boast against me that her own strength has saved her, announce now to the people, ‘Anyone who trembles with fear may turn back and leave Mount Gilead.’” So twenty-two thousand men left, while ten thousand remained.
But the LORD said to Gideon, “There are still too many men. Take them down to the water, and I will sift them for you there. If I say, ‘This one shall go with you,’ he shall go; but if I say, ‘This one shall not go with you,’ he shall not go.” So Gideon took the men down to the water. There the LORD told him, “Separate those who lap the water with their tongues like a dog from those who kneel down to drink.” Three hundred men lapped with their hands to their mouths. All the rest got down on their knees to drink. The LORD said to Gideon, “With the three hundred men that lapped I will save you and give the Midianites into your hands. Let all the other men go, each to his own place.” So Gideon sent the rest of the Israelites to their tents but kept the three hundred, who took over the provisions and trumpets of the others.

(Judges 7:1-8)Early in the morning, Jerub-Baal (that is, Gideon) and all his men camped at the spring of Harod. The camp of Midian was north of them in the valley near the hill of Moreh. The LORD said to Gideon, “You have too many men for me to deliver Midian into their hands. In order that Israel may not boast against me that her own strength has saved her, announce now to the people, ‘Anyone who trembles with fear may turn back and leave Mount Gilead.’” So twenty-two thousand men left, while ten thousand remained.
But the LORD said to Gideon, “There are still too many men. Take them down to the water, and I will sift them for you there. If I say, ‘This one shall go with you,’ he shall go; but if I say, ‘This one shall not go with you,’ he shall not go.” So Gideon took the men down to the water. There the LORD told him, “Separate those who lap the water with their tongues like a dog from those who kneel down to drink.” Three hundred men lapped with their hands to their mouths. All the rest got down on their knees to drink. The LORD said to Gideon, “With the three hundred men that lapped I will save you and give the Midianites into your hands. Let all the other men go, each to his own place.” So Gideon sent the rest of the Israelites to their tents but kept the three hundred, who took over the provisions and trumpets of the others.

  1. #1 by Trish on June 22, 2011 - 4:46 PM

    Jill, Thank you so much for sharing this with us. You are one of God’s spiritual giants! I like what you said about each step being lighted by the Lord and trusting Him with the road ahead. All we can ask is, Lord what do you say about today? And sometimes, Lord what do you say about this moment? I’ll share with you a scripture verse that the Lord gave me recently concerning a situation which is a journey of a thousand miles! Specifically, James 5:11

    “Indeed we count them blessed who endure. You have heard of the perseverance of Job and seen the end intended by the Lord–that the Lord is very compassionate and merciful.”

    Consider the perseverance of Job. Unlike Job who had to WALK THIS OUT in faith despite immeasurable pain, despair and loss, we have the benefit of standing on the other side, thousands of years later and seeing “the end intended by the Lord”: Compassion and Mercy. That was His intention all along. It is His intention for you and your family.

    I quoted that phrase to someone just yesterday!! The journey of a thousand miles… We take the first step and the next and the next and the next, one day at a time… all the way to His intended end.

    You do well, Jill to hold on (endure) and to boldly speak this Faith in the midst of it all which many of us just read about or talk about. Let the mighty hand of God be seen because of your faith! His word says you are blessed.

    Thank you again, my dear sister! Love to you with big hugs!
    Love,
    Trish

  2. #2 by Andrew on June 23, 2011 - 8:29 AM

    Jill, I want to thank you for being so transparent with us all through this whole ordeal. Your testimony encourages me, it gives me hope and strength, and it reminds of God’s surpassing peace and love, and his sovereignty even in the midst of tribulation.

    A verse comes to mind:
    “But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed…knowing that he who raised the Lord Jesus will raise us also with Jesus and bring us…into his presence. For it is all for your sake, so that as grace extends to more and more people it may increase thanksgiving, to the glory of God.
    So we do not lose heart. Though our outer self is wasting away, our inner self his being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” 2 Corinthians 4:7-9, 14-18

    Thank you for your faithful witness and for extending this grace to all of us. Glory to God forever!

    ~a

  3. #3 by Katie Cote on June 30, 2011 - 12:33 PM

    Jill-
    What a wonderful testimony of God’s faithfulness to us. Even in the midst of it all, it is a blessing to me to witness you choosing to believe God. Thank you for sharing this journey with us. And for being a Witness unto Him.
    Love to you.

  4. #4 by Lucinda on February 10, 2012 - 4:59 AM

    Thank you so much for your story it is truly encouraging and has reminded me if God’s infinite power, wisdom and love. Our 4 month old has had developmental delays from a very early age and started to have seizures at 8 weeks. This week we have been told she has a chromosome duplication and doctors have taken our blood for analysis, devastingly she has now developed infantile spasms and we started on steroids 2 days ago.

    Reading your story has given me the faith and courage to continue praying with expectancy and the knowledge that our Father is with us all of the way. I truly can trust on him for all of our tomorrows .

    Thank you

    Lucinda, mummy to beautiful baby Lara

    • #5 by jletfaitharise on February 24, 2012 - 9:52 PM

      Dear Lucinda,

      God has been so faithful to our family… it’s interesting though that it doesn’t always ‘look’ like we expect… His faithfulness has carried me through the days I thought I couldn’t stand up and it will carry me through the days to come of which I don’t know what it holds for Evelyn. Evelyn has exceeded every report you could find on paper about her… She’s walking, talking and a great joy!

      I pray that sweet precious Lara is responding to the steroid treatment… but if for some reason it is not working as expected, please rest in knowing there are many other options and you will find an answer to help your little one! For Evelyn the steroids did not work, but our second round of medicine, Vigabatrin, worked within 5 days… I have recently met a mom just a few towns over that her son responded beautifully to steroids and is now walking and talking when only a few months prior he didn’t even respond to his name…

      God has wonderful plans for our little angels… I encourage you to think big and trust God! The doctor’s will give you worst case outcomes… but faith gives us HOPE! Fear goes to the worst case scenario, Faith trusts God every step of the way… Believe in all God would have for Lara!

      I’d love to know how little Lara is doing…

      Blessings to you and your family…

      Jill

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