10.15.2009

more news...

Just when I thought I was getting my mind wrapped around this intruder in our home, we get news that Brooklyn, our 3 month old baby girl, most likely has MPS too. Her urine came back with elevated levels of sugar consistant with MPS. Next steps? other than crying my eyes out? We wait. We wait for Jayden's test to confirm MPS III and figure out which type out of four he has of Sanflippo. Then, we test Brooklyn to confirm she has the same. Why is this the will of God for my children? I can't get my mind around this. Is good gonna come out of this? Yes. Is God still gonna be glorified? Sure. But REALLY...BOTH of my kids???

God can still preform a miracle. What would that look like here? Well, he could get rid of MPS in both my children. He could have the retest of Hunter's come back positive and Brooklyn's urine really was a false positive and she is fine. Can that happen? Of course. Will that happen? I don't know but God does. The worst case? They both have Sanfilppo and we live with it. Key word LIVE. They are not gone yet. Jayden is still lighting up a room, running around asking for snacks, juice and "my dadda". He is still progressing. Brooklyn just started to smile. How can we put them in a coffin now? We don't do that with healthy people until we realize they are dead. I am not gonna grieve for my children when they are still here. I am gonna force myself to crawl out of this dark hole and fight to live in each blessed moment the Lord gives me with my children, darn it! This is the promise that God gives us, He alone has overcome the world and I want to start living like it.

Keep praying. I am crying out to God but most of the time I am relying on the Holy Spirit to do it for me. Will you pray for a miracle?

Thank you for your outpour of love a support!

Sorry I am so fired up right now! I am starting to realize how theraputic this blog thing is for me!