Saturday, February 28, 2015

God-you are Good!

It's a funny thing sometimes, memories of the past. Some of them we remember just a few things about and then there are those things we remember just about every  single detail of.

  It was almost my 30th Birthday and I was so excited to being turning the big 3-0. I had this feeling that my husband was gonna surprise me pretty big and I just was hoping it was something with all of my precious people. 
  We were at home a few days before and my brother and sister in law called to stop by and share some news with us. I wasn't concerned to much. My little niece had being having some tests ran, suggested to her by a dr. They had been going on for  a month or so, in which Morgan had told me all came back ok.   But when they arrived, I could tell that something was not right. Morgan's eyes were blood shot and Ryan seemed weaker than the normal confident standing man he usually was.  We sent the kids back to play and I'm pretty sure I held little Emma darling, who was still a sweet baby at the time. We adults sat on the couch in our living room.  Morgan went on to tell us that they had another call come in regarding Anni's testing that had been done. And that it wasn't the news they expected. Anni had a super rare test ran on her blood(I believe) and something popped up .  They informed Ryan and Morgan that our sweet little Anni had a rare genetic disease called MPS type 3.  I'm sitting there in shock, next to my husband , and I get defensive. What is that? There is no way she can have that. Do they know for sure?  Did they run the test again. And then the natural cheerleader in me wanted to say, It's all gonna be ok. What can we do? How do we cure this? 
  After they explained to us what this disease was, they finished with this fact that the only child they knew that had this , died when she was 6.   
 I felt like I got punched in the gut. No-not my Anni. Not my sweet little niece that is suppose to be best friends with my daughter Peyton . This just can't be.   And we all cried . Because when you don't know what to do and you don't know what to say and your emotions just consume you... you cry.  
  In the time they were at our house, Morgan mentioned that they were trusting God with this. That they knew God had a sovereign plan through it all. That God is still good. 
   4 days later, I turned 30.  Midnight of my 30th Bday, Jason had surprised me with gathering a bunch of my friends and having them surprise me at the local theater to watch the latest Twilight movie premier.  I was surrounded with some of the best ladies in the world! And I just felt humbled and super special. 
  As the  movie starts and goes on, I see Morgan slip out. She didn't return for a while and I got a little nervous for her. I decided to go and check on her. I found her sitting outside on a step. It was a rare dry November night , as we live on the Oregon Coast, but it was still a little chilly. She had her face in her hands.  I sat down beside her as she cried and I put my arm around her. She mourned and grieved as though Anni's life was already gone.  You see, as a mom- Morgan saw it that way, to a certain point. She mourned over the fact Anni wouldn't get married , or graduate from high school, or experience life the way she had. It hurt- a hurt so deep that no one can explain it.  I just listened . I just held her and I just "walked" it out with her. My precious strong, wise beyond her years , friend was mourning the loss of her sweet first born.This bubbly, happy, singing little girl whom we all adored. And I got her. Not to the point of my child being given that same diagnosis but as any mom would- losing a child.
 We are given these paths in life. Some of them are full of our own trials and our own hurts. And then there are some of our paths, we are called to "walk" and lift up others, as they go down their paths of hurts and trials. 
It has been 3 and 1/2 years. I have seen a husband and a wife grow deeper in their marriage, when some people would have ran . I have seen a husband take amazing care of his family and stepping up to this challenge, when lots of men would have left . And I have seen a woman grow in her walk with the Lord like I have never seen before. Morgan could have blamed God and walked away from Him and been super mad at Him. But God, in His grace allowed a peace that surpasses all understanding in my sweet Morgan . She tells me, "And my God, He is still God." Because He really is. 
  This story is not finished yet but today being awareness day - gave me the desire share it, just a little from my side of things. 
 Here is a little more info on what MPS III is : 


MPS III (Sanfilippo syndrome)

MPS III is a mucopolysaccharide disease also known as Sanfilippo syndrome. It takes its name from Dr. Sylvester Sanfilippo, who was one of the doctors in the United States who described the condition in 1963.
What causes this disease? 
Mucopolysaccharides are long chains of sugar molecule used in the building of connective tissues in the body.
 “saccharide” is a general term for a sugar molecule (think of saccharin)
“poly” means many
“muco” refers to the thick jelly-like consistency of the molecules
There is a continuous process in the body of replacing used materials and breaking them down for disposal. Children with MPS III are missing an enzyme which is essential inbreaking downthe used mucopolysaccharides called heparan sulfate. The incomplete broken down mucopolysaccharides remain stored in cells in the body causing progressive damage. Babies may show little sign of the disease, but as more and more cells become damaged, symptoms start to appear. 
For WAY more details on this disease - go here MPS lll
Please be in prayer for my sweet niece and family as they continue to walk this journey of MPS. God has already used them in so many ways. And to follow them on their journey check out Morgan's blog here :  Morgan's Awesome Blog