Real with you.

Ok, so normally I am upbeat and excited in my postings but today is going to be honest.

It is hard for me to ask for help and I like to feel/look like I have it all together but Jesus is trying to grow me in this way~ allowing others to be close, see my vulnerability, and be the Hands and Feet of Jesus to our family. The first step is being honest... something that goes against my sin nature. It is difficult for me. I had reality hit today. The question was, "why doesn't Shaun sleep in his own room?" I came up with 2 main things, 1~ I am scared that he may wrap himself in his g-tube durning the night or pull it out and 2~ that Sarah died in her crib in the middle of the night and I am scared that the same thing will happen again without my knowing it. Both of these are rooted in FEAR. I thought I had dealt with this fear but as a good friend told me today that it will be a battle for the rest of my time here on earth. Why?~ because I am human and we live in a sinful world that has death. 

Another reality hit me today. I don't have it that bad and there are a lot of others who have it "worse". I say it like that because I don't consider Shaun's situation "bad" but it is trying. 

Why is it trying?~ because I had all these dreams and plans for him, dancing in my head, since the day we found out he was coming, that have since gone up in smoke. Now it is~ will he survive this? Will he be able to walk one day? Will he be able to eat on his own? Will we ever know what is causing this ailment in my precious baby? Could it happen to my other children as they grow? Am I strong enough to walk through this? Is our marriage strong enough for this? Then I look into his face and know that I am projecting onto him. He loves us, his brothers, his family. He delights in our gazes and coos at him. He is excited by our encouragement, and lives his day to his fullest. 

Then God met me in an unexpected way. In Sunday School we are learning about Community. Some call it Fellowship of Believers, other call it friends. These ladies are amazing to me. They pick me up when I am down. The ask the simple question, How are you? and genuinely want to know. I can be real to them and they are real with me. I feel safe. I am so thankful for each one God has placed in my life, just for right here and right now.  One of these women sent me a blog about another family with special needs. It was a father speaking about his weakness and how God met him there. To paraphrase he went to the Bible, the Instruction Book, to find out why things happen, why does 'needless' suffering exist, why do children have disabilities, the questions all of us ask and this is what he found. 

John 9:1-41.
"Rabbi, who sinned, this man or his parents, that he was born blind?" In other words, "Why did this happen~ what is the meaning of this~ who sinned here?" Its interesting how Jesus rarely answers the desciples' (or anyone's) question on their terms. Our questions about suffering are generally rooted in causes. What caused this to happen? Jesus answers, "It was not that this man sinned, or his parents..." So, neither assumption is right. Jesus was indicating this disability and form of suffering cannot be correlated with any specific sin. He responds to their question on his own terms, not with a cause but a purpose.

This disability has a purpose. "...that the works of God might be displayed in him." God's works are gloriously displayed in His creation. Psalm 139 beautifully describes God's supreme control in a baby's formation within the mother's womb. "Who has made man's mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord? (Exodus 4:11) When something goes wrong, He could stop it. Easily. But sometimes He decides not to. FOR A PURPOSE. 
  

 So pray for me, our family and Shaun. Pray that God will guide our path, show Himself to us during our struggles, pour out His mercy on us when we don't know if we can keep on. Pray that we as a family will keep our eyes upon the Lord, the Author and Finisher of our faith and that He will be glorified in our lives as we go through our ups and downs. May we be a testimony, give you encouragement and point you toward Jesus~  through our actions, words and deeds. This is my prayer.

I am not sure what the future holds, but I do know this. Our boy brings a special joy to our life, one that only he could bring. His brother's adore him, he melts his parents' heart daily, all that meet him love him. He is special and a glorious Gift from God. We are not promised any length of time with any of our children. I will try to live each day to the fullest with all my boys, because we never know when it may be our last. I will strive to give Shaun the best future Shaun can have, perhaps loosing it a few times (crying my eyes out until tears flow no more) along the way, but with God's help, make the tough decisions, go to all the appointments, work hard on therapy, keep trying to get him to take food by mouth, give him the most opportunities to grow and develop, and melt at the beautiful way he looks at me. 

We go to Cleveland to meet a new specialist in a little over a week. Pray for us, for wisdom, discernment, for fear to leave us, and right choices be made for Shaun. For us to continue running the race, marathon, and not to grow weary. For our marriage to be strengthened and our family to grow closer, knitting us together through trial and adversity, through everyday life. Then maybe we will have a glimpse into the purpose God has for our little boy.

Look for Shaun's full story to come.