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.