Big Brother Love

Scottie loves Shaun. Shaun loves Scottie. Its a beautiful thing!

From the moment Scottie understood he would be a big brother, he was in love with "his" baby. He would kiss my tummy, rub it and say "big brother loves you." He loves him even more now that he can hold him, help him, teach him, kiss him. 

No worries, Shaun will always have his big brother to look out for him.

Nothing does this momma's heart better. 

Scottie Love.

Last night, as I sung to Scottie, he melted my heart... This is what happened.

We usually sing 2 songs, then pray and sing 2 more songs. Since Peter is out of town, I have Shaun with me as I am putting the big boys to bed as he goes to sleep later than them. I sung "Jesus love you" and "I love you so much" to Scottie, then Shaun decided he wanted to be between me and Scottie. Scottie loves this time because we usually cuddle and he gets his fill of "physical touch" love at this time. Then when Shaun came up between us, he still wanted that cuddles. I extended my arm under Shaun and then under Scottie's head and he exclaimed, "MOM, you're AWESOME!" and I said, "Thank you! You're awesome too!" and he was like "NO, Mom! Your the AWESOMEST!" Then I asked why and he said that he was sure I wouldn't be able to hold him but I could. It was amazing to him.
He melts my heart!!!

I love you, Scottie!

New Blog

I recently decided that it was time to start a new blog. I decided after posting "Real with you" that Shaun's story could in fact help someone else and allow me to get feelings out that I leave bottled up, ask for prayer, and be real. So with that, Shaun's Story was born. 

This will have our trials, doctor's visits, Shaun's advances (and maybe declines), pictures, love, prayer requests, verses that inspire and true feelings.

I cannot promise that I will update every day, be eloquent in speech, or even share every story I have, but I will do my best, ask it to be blessed, and let God take care of the rest.

If you would like to check it out or know someone who may benefit from our experiences please share!

shaunsteyaert.blogspot.com

Fishing at Granddad's

This past weekend, we went down to visit Granddad and Grandmama. We had a good time, helped them move in their new couch to the "Man Cave" and even went fishing! Scottie has been asking to go fishing for the last couple of weeks so when he saw the river he was very excited. 

dad explaining how to hook a worm...

mom and shaun enjoying the river

 We dug worms, Granddad hooked 'em and then they watched the bobbers with great anticipation... and nothing happened...

 Then all of a sudden, Scottie's bobber disappeared under the water and he started reeling, and reeling, and reeling... Then out came a fish!!

He was so excited he started pumping his fists and saying "YES!!" It was a great afternoon and I am sure with these boys many more fishing tales are to come!

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.

Happy 4th birthday Scottie!!

4 years old!!

 

 Saturday was Scott's 4th birthday and although we didn't do a whole lot, Granddaddy and Aunt Christiana came up for a quick visit, Scottie opened presents from Mommy and Daddy and brothers, and Daddy took him out to a special birthday breakfast. Mommy came home with Shaun from his cataract surgery and met them in Winchester after Scottie's breakfast out. That was followed by a session of throw up and then by the afternoon he was fine! Scottie has been looking forward to turning 4 for a long time. It meant he would be able to ride the dirt bike. Daddy took him in the front yard and let him ride it around (while daddy was holding the throttle and running beside him per Mommy's instructions). I learned that you have to let Daddy's be daddy and do some things that mommy's just wouldn't in order to build that bond between Daddy and Son. SO with eyes wide shut I watched as my little boy rode around on the motorcycle, loving every minute and looking forward to when it would be his turn again. We ended up coming inside after that and opening gifts, playing with presents and spending quality time together.

I look forward to this next year with Scottie and seeing how God develops this big boy!  He loves playing LEGOs, any action figure, dressing up as characters (he got Iron Man for his birthday), playing kitchen, play dough, and going on bike rides and playing at the park. He is unique to Scottie, wanting to cuddle and hold his baby brother, but loves his independence in being able to do most things "by myself"!  He loves his friends, wants to be a fireman, policeman and soldier when he grows up and has the most loving big brown eyes and cute smile that will someday get me into trouble. I love you, Scottie!!