Monday, November 12, 2012

I want to clear a couple things up. Edward has Freeman-Sheldon Syndrome. What does that mean? Most of the time, I don't know. What will his future look like? I don't know. I would love say that he will be exactly like you and me. Obviously he won't. He is as smart as a tack. Cognitively he is all there and more! He is trapped in his body. Makes me sad. Will he walk? Yes, I do believe he will walk. Every child with FSS is different. There are no two cases the same. What does his life expectancy look like? I don't know. Kinda depends on his spine. I am faithful that the Lord will give him a long and happy life. But what is yours or mines life expectancy? Only the Lord knows. Will Edward talk...normally? Umm...I want to say YES. Is this a muscle or bone thing? All I know is that it is a mutation of the myosin/muscle gene. How big will Edward get? Umm..I am not sure. Maybe 5 feet? These kids are small. Guys...I am living day by day. That is all I can do. Out of all the grandchildren my grandparents have...we are talking 30+...I was blessed with this. I am excited for the day I get to ask Jesus why, what did You see in me, I am nobody but a stubborn loud-mouth!? Jesus has a great and mighty plan. I don't know what it is. Who does? I trust and know that He is good and I am thankful for that. He is always with me and my kids and will never leave me or forsake me. His promises are good. This world is crazy and scary. I am a sinner and fail constantly but I have been redeemed. ONLY by God's grace I am free from this life. So are you and our kids. God loved us enough to send His only son to die for our suckiness. If you have kids that should hit you like a ton of bricks. I couldn't give my kids up to die for anything. All we have to do is believe. Yes. I believe, Lord. I love You with my whole heart and soul. The pain that I feel is only temporary. All my trips to Seattle...the pain and hurt is so deep inside of me. But I choose to take comfort in Your unfailing love because You loved me first. I don't know why but you have knocked on my heart and I am listening, I am yours. "My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken." Psalm 62:1-2 "You who live in the shelter of the Most High, who abide in the shadow of the Almighty, I will say of the Lord, "My refuge and my fortress; my God, in whom I trust."" Psalm 91:1-2
Let's lay our troubles down. Humble ourselves. Be free from all of this. God loves us.

Don't waste a second more of this life.
It is not worth it to not believe.

1 comment:

  1. Hi!
    I search Google for Freeman Sheldon Syndrom and your sons picture came up. He has the same nose and some other facial likeness as myself.
    I have Freeman Sheldon Syndrom, so the doctors has told me for 18 years now. I am a 28 year old girl, living in Norway. Here, they say I am 1 of 2 cases the doctors know about who have this syndrome. I just wanted to tell you that I hope your son is okey. I am okey.
    I have had a wonderful boyfriend for 7 years now, I work 100 % in a kindergarden, and I have lived on my own since I was 18 years old.
    I have been throu 6 surgical operasjons (very painful) to look like I do today, but my face is more og less "normal", still you can see the Freeman Sheldon - features if you look closely... I have learned have to live with this, and still, sometimes, people stear at me and are asking me who I look like this. It can hurt, but I always remind myself of the life I have with my boyfriend, thats all that matters to me. I am healty, and as I said, i work 100 % in a kindergarden, and I am loving life. I am 1.48 cm, so I am not tall, both my forefingers are bent, both my bigtooes are smaller than all the other toes. And on both my feet, one toe each is behind the other toes. I have sometimes pain in my bode, sometimes everywhere, espesially if the workday has been hard, but then again, I think everyone working in a kindergarden somtimes experience pain in their body. I have spesialmade soles in my shoes so that me feet doesn't hurt as mutch. Other than that, I live a very normal life, with my boyfriend.
    I hope your son is fine, and if you want to, I can send you pictures of me when I was a little child. If you have any questions or someting, you can contact me at:
    I want to wish your son good luck in life, and I want to say one more thing: never let him make this syndrome a reason to not do things in life, because there is so mutch to experience. Never feel sorry for yourself, imbrase the fact that you are different and unique, more than others are! And just be you!

    Love Stine.