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Tuesday, October 27, 2009


Christian and I had a good weekend! We pretty much stuck close to home due to all that H1N1 fun going around. No need to expose Christian to anything he doesn't need. He hasn't been sick yet and I want to keep it that way. There have been two sickies in my household in the last month and I basically quarantined them in bedrooms until they were better. The sick mommy and no sick Christian.

It's been a few weeks since reducing the Baclofen (muscle relaxant). In hindsight, we made the right decision. There has been progress in his attention and in his hands - grabbing and feeling toys and blankets. This is meaningful progress to me because it just seemed a part of him was able to do stuff and wake up a little more. His movement is more deliberate and stronger. So now I'm thinking about when and if to reduce again. I'm really interested in what I've heard about Magnesium as a replacement but not many people know about it and with prescriptions...I don't even know where to start.

Yesterday we had a heck of a time getting to therapy, but our sessions today and yesterday were productive. His OT is noticing better alignment in a sitting position, more trunk support, and when leaned forward in a seated position he can hold his head up for just a few seconds completely in line with his spine. His arms are straight, but mobile, rather than stuck in a posturing position. And he's been whining and crying more. He cries and whines when he's tired, mostly or sometimes he wants to change positions. He whined through church on Sunday, so much so that Daddy had to take him to the lobby. Typical baby.

Speaking of church...the message was so relative to what we've gone through. It was about Psalm 91. I'm in no way well versed in biblical scripture but from what I can gather it's about seeking refuge in God while fighting off the adversary.

No matter what that adversary is - the devil, demonic powers, devilish-demonic doctors? - that when you stand up to the adversary, you have the power because God has your back. I remember being in the hospital that first week with nobody believing in Christian but us. Sometimes I wonder how I ever got through it because when I think about it I felt like I was in a daze, like I was invisible, only relying on God to get us through.

The message in church also said that God doesn't promise us we won't go through tragedy, but he promises we will "get" through tragedy. The pastor also talked about a hiding place, a safe place of refuge when everything is going wrong, you just want to hide and be invisible for a while, and it doesn't have to be in a physical place that you go to. For me it was right there in that hospital room. I was invisible at times, I didn't want to be coddled or visited. I didn't want to be made to understand the severity of the situation. I only wanted to believe he would make it.

This entire sermon was so uplifting and so true to what we went through those awful first days, I was thinking - was the pastor there with us or something? No. But our situation isn't unique - tragedy happens to everyone. In retrospect, there were adversaries that said Christian wouldn't make it, or that his circumstances would be dire. We said NO. And we sought out that hiding place in the shadow of God and He got us through those extremely difficult days. There is NO other explanation.

There was also a message not to be afraid of what's to come. Often I get caught up in the unknown and I get scared of what I don't know. Will Christian ever smile? Will Christian ever walk? Will Christian be okay? But we shouldn't be afraid. We should just be. We should trust that God will take care of things.

Although we are still going through this journey, we are continuing to fight off adversaries that tell us Christian needs this or doesn't need that. To these adversaries we say NO. Of course, we aren't rude, we say thanks but we know what's best for him. There, that's polite. We're relying on God, unafraid, and strengthened by the shear power we've already witnessed.

As it was and how it will the adversaries we say NO. We move forward without fear and with nothing but hope.


Rochelle said...

I so needed to hear what you just shared. Thank you.

Baby Billys Mom said...

I am so glad that you said all that you did. It's comforting for me to know that you understand that God has been and always will be with you. I still pray for Christian's recovery and for you and your family's comfort. I litterally cry to God when I'm asking him to bless you. You are blessed to post what you have today. God bless you Shauna and your whole family! Hang in there, God is your Rock. : )

Jendioguardi said...

Your strength no longer surprises me, I know it now. You're extraordinary. Your journey reminds me of how awesome God is. Christian is amazing and his will and recovery can only be explained through one answer....God. I thank you for your blogs, they are a true inspiration to so many people. You are always in my thoughts and prayers. <3 you guys!!

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