some misc. info.

I guess our blog has started a bit of a following! That makes me happy! I am glad to hear stories about God working through this already! People I don’t even know are reading and following our family.

Before all this happened, I have to share two things that Jut and I were praying for. Jut was praying for God to ignite a fire and passion in him for the Lord. I was praying that others would see Christ through me. Matthew 5:16 (The Message) says, 14-16″Here’s another way to put it: You’re here to be light, bringing out the God-colors in the world. God is not a secret to be kept. We’re going public with this, as public as a city on a hill. If I make you light-bearers, you don’t think I’m going to hide you under a bucket, do you? I’m putting you on a light stand. Now that I’ve put you there on a hilltop, on a light stand—shine! Keep open house; be generous with your lives. By opening up to others, you’ll prompt people to open up with God, this generous Father in heaven.

We see how God was preparing us and is now using this for His glory. Also, Jut was going to pursue a career change and enrolled in school to become a firefighter. Through the process, even when doors seemed like they were opening, God placed a restlessness in his heart and he dropped out in time to get his money back. All he kept saying was I just need to be with my family…I don’t want to be away from my family. We now see why. All this to say that we see God in this. Looking back, in the present, and in the future. Not only was He preparing us, he will sustain us. You are helping us do just that. God is using you to speak to us. Thank you.

Some of you are interested in more information regarding MPSIIIA. We suggest visiting http://www.mpssociety.org/ it has been very helpful for us. Here is the link regarding Genistein, a potential option for Jayden and Brooklyn. http://www.mpssociety.org/content/4104/Professor_Grzegorz_Wegrzyn/
we will find out more when we meet with the expert at children’s and speak to other parents about it. We should hear from the Doctors Tuesday and may be in as early as this week to find out where we go from here. I am assuming they will get a baseline of where Jayden is now to assess his development from this point further.

Some of you are looking for tangible ways to help. Right now, we don’t have many needs but know we will need help in the future. Right now, our children are the exact same as they were three weeks ago. If you see them, they are healthy, thriving, and “normal”. Jayden has some speech delays but that is about it. In the future when the disease progresses, our needs will change. The best thing we need is a healthy balance of spending time with our family and friends. In terms of financial needs, the biggest thing we are doing is going to Disney for the MPS convention. Justin’s cousin and husband generously offered to help us set up a website for donations, so that will be in the works soon. To be honest, we are not really ready to see our kids faces on a can at McDonald’s or think about medical expenses although we know that is a part of this. When this first happened, I was on a family’s blog that had MPS. They had t-shirts on for a run/walk they did. Wanna know what I thought? I don’t want to buy a t-shirt. I don’t want a purple ribbon. I don’t want to be the spokesperson for MPS. I want to be in the back…deciding if I should give $10 or $20 to another family and go back to my “normal” kids….Bad, right? But true. Now, I think I am investing in a t-shirt and a purple ribbon or two.

We went to church today for the first time since this happened. I knew worship music was gonna make me cry. I balled like a little baby during Mighty to Save (lyrics at bottom), I think a few others around me were crying too! Jut and I just held each other. Always a bit awkward being the one that people “talk” to. We are so happy that we have a wonderful body of Christ! People saying we are praying, giving hugs, and still loving on our kids…that was great. But, what do you say to parents that just found out both their kids have a terminal illness? I’m sorry? I understand? Did I say too much? ….Not enough? Am I supposed to cry or be strong? Do they want to talk or be left alone? I never knew how to navigate that either…. So, we have no expectations of you! Cry, ask questions, hug, avoid us….whatever works for you. Just don’t ignore the Lord prompting you. Some of our best insights from God have come from the most unlikely people.

The biggest thing we want to do is enjoy our kids and spend time with them while still protecting our marriage.

Here is some things to pray for. Jayden’s sleep. He has been waking up in the middle of the night and that is a symptom that we can now attribute to MPSIII. Justin and his anxiety and fear of the future…it keeps him up at night. Jayden and Brooklyn progressing and not regressing. Brooklyn is going to start early intervention with the state program and Jayden is getting a reevaluation with his IEP. That the peace of God would envelop our home. Pray that we will continue to hope for miracles. We want to keep our minds safe from thinking too much about the future. Silly of us to think we were ever in control.

Another quick thought. God watched His son die a death he didn’t “deserve” at a young age, a terrible way. He watch His only son die. Jesus didn’t have a long future, with 2.5 kids, a dog, and a white picket fence. He wasn’t a grandpa, a father, or a husband. Look at the impact His life made…..we were never promised earthly riches….only eternal ones.

The only place we want to be is in the center of God’s will.

Mighty to Save
Everyone needs compassion,Love that’s never failing;Let mercy fall on me.Everyone needs forgiveness,The kindness of a Saviour;The Hope of nations.Saviour, He can move the mountains,My God is Mighty to save,He is Mighty to save.Forever, Author of salvation,He rose and conquered the grave,Jesus conquered the grave.So take me as You find me,All my fears and failures,Fill my life again.I give my life to followEverything I believe in,Now I surrender.My Saviour, He can move the mountains,My God is Mighty to save,He is Mighty to save.Forever, Author of salvation,He rose and conquered the grave,Jesus conquered the grave. Shine your light and let the whole world see,We’re singing for the glory of the risen King…Jesus (x2)My Saviour, He can move the mountains,My God is Mighty to save,He is Mighty to save.Forever, Author of salvation,He rose and conquered the grave,Jesus conquered the grave. My Saviour, you can move the mountains,You are mighty to save,You are mighty to save.Forever, Author of Salvation,You rose and conquered the grave,Yes you conquered the grave

JUT’S FAVORITE VERSE
Isaiah 41:10 (New International Version)
10 So do not fear, for I am with you;

do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

10 thoughts on “some misc. info.

  1. WOW!! This is what I think every time I read this blog…WOW!! Your love, dependence,obedience,trust and faith on God shines through brightly in every word you right in this blog..He has BIG plans for all of you and is very pleased with the way you have handled the last few weeks..You are on a path now that your words and actions can make a big difference in peoples lives…people that know you along with those who don't can and will learn for you experiences.Be honest, be real,and be who God designed you to be.
    Jut,Stef,Jayden and Brooklyn your are and will remain in our daily prayers. Thankyou very much for your encouraging words!! You are awesome!!
    Ted and Gretchen

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  2. Stef,
    You and Jut are truly amazing, you may not see it because you are in a survival mode. But you all have and will iMPACT many lives through your journey. God will use your family for His purpose, as worldly people we don't see it or understand it but God has never led us wrong…HE is mighty to save! We are here for you guys and love you loads…thanks for letting us ride with you on this journey.

    Praying right along side of you, always
    ><> 🙂
    Joe, Carol and the kids

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  3. I continue to pray, weep and rejoice in the good/God moments with you. My husband and I went through a long fertility workup, then the grief of not feeling God's “yes” to do IVF…the 2 years of paperwork, psycho-testing to adopt (which we had started BEFORE the infertility)-even worse beaurocracy in Mexico….My prayer the entire time was “God be glorified somehow in this pain”. He has, I believe, used it to witness to many non-believers (like my dad and brother) and believers about His goodness in the middle of our “Shattered Dreams” (Great book by Larry Crabb). He is, and will continue, to use your pain to point others to Him. He ALWAYS redeems our pain for His Glory, when we let him. I am impressed and challenged by your faith and steadfastness. Press on….Worship songs have never ever been the same for me since either. In Him,
    Kathy Gouzoules (Tenancingo Mexico)

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  4. I always cry when I read your blog Stef. Each time I read it, I'm even more amazed at your strength and faithfulness to our Lord. I'm growing closer to Him because of you guys. Thank you for being a rock for Jesus. My relationship with our heavenly father will be ever stronger because of all of this. I love you!

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  5. What a great song! So glad to see you post it on here today…Elizabeth and I shed tears right along with you Sunday (we were sitting right behind you guys). Such appropriate words…and it was a beautiful thing to see you and Jut leaning on each other, my heart just went out to you both.

    My favorite line in the song is that Jesus Conquered the Grave. There has been so much tragedy lately and I just seem to find SO MUCH comfort in the fact that Jesus has been through all of this. He's gone before us and He knows the pain we all feel…but He made it!! I think that's the best part. He WON. It's going to be OK somehow. I find such comfort in Him…and I can tell by what you wrote today that you do too…praise God.

    I love your honesty on here. As you guys figure out how to be the best parents you can be in your new normal, we are all figuring out how to be the best friends we can be. I'm sure we'll all awkwardly stumble through this but thank you for your graciousness and giving us all the permission to do so.

    That goes both ways…you have full permission to be however you need to be too. Some days you may not feel so strong…you're allowed to say so 🙂 God will use your pain and honesty to show all of us that we're allowed to need people. And on your good days, you guys will be a SHINING light to all of us. God is going to use you in RIDICULOUS ways. He already has.

    God Bless your beautiful family…I think I'll see you Saturday!!! 🙂

    Nicole

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  6. hey steph.
    i just wanted to let you know, that your blog has touched me. every time i have read it ive been filled with encouragment.. and lots of tears.. i remember when my dad told me on friday about the results i cried, and prayed the whole day, and so did britt.. but to read you blog, and see how strong you are being through all of this, and how strong you are allowing our God to be in your lives through all of this is truely incredible. you and jut and your two beautiful babies are an AMAZINGLY stong family for the Lord. I sent this blog to all my pastors, and some close friends to keep you guys in prayer, but honestly i think more than just praying for you guys, they're going to be encouraged.. and see God through your family. the song mighty to save we did a human video to, my first year of college, and we used the words in a little different way, but man i JUST NOW realized the power of this song! its brought a whole new meaning to me and everyone that knows your story and has heard it.. look at what Gods doing through this! i do know that even though this whole situation is really confusing and i dont understand myself why Gods plan would include taking my two beautiful little cousins from this world, i know that he is God, and he is so so good. his will is PERFECT.. i know everyone always says “everything happens for a reason” but it does. this is a testimony to that.. look at all the lives being touched, and changed by this situation… its unbelievable.. God definatly knows what he's doing, and he has this is control. NOTHING happenes without first going through the hands of a Just and faithful God. He is SO SO good, and i trust him with these little ones :] i love you guys so much! thank you for letting God shine through you, and change lives.
    I pray that God will continue to give you a fight,a peace, and a strength that can come only from him.
    love you
    ♥ nikkie

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  7. I could hardly get the words out to that song from stage because I could see you and Jut – and behind you was Karl. It's amazing how the words to songs we've been singing forever suddenly take on new meaning. It was great to see you yesterday. We love you guys!

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