If you don't have anything nice to say

Posted by Erin Wilson On Saturday, December 19, 2009 0 comments
I haven't posted anything this week because I've been living by the philosophy "if you don't have anything nice to say, don't say anything at all." It's just been a tough week with Josiah being very uncomfortable and inconsolable , high fevers, low blood sugars, and NO answers. I'm happy to say that at least he has seemed the past two days to be more comfortable and much easier to console. In fact yesterday I even got a glimpse of "normal baby" fussiness and it was delightful. Josiah was over tired and fighting sleep, rubbing the back of his hand on his eyes. He was comforted by me holding him, but would cry again as soon as I would attempt to sit down with him. I remember hours of that with my girls. They would only be happy in my arms if I were standing up. This still makes no sense to me, but somehow they always knew the minute I sat down. That's what Josiah was doing for me yesterday. He would fall asleep in my arms so I would sit and he would immediately wake up. What would normally be a frustrating scenario allowed me a glimpse of "normal baby" and made me so happy. So I stood! I think Josiah is going to win a lot of those battles!

My, not having anything nice to say, has to do with just not having answers. It is so very frustrating. I am not for one moment frustrated by the doctors or Josiah's care, just that there are no answers to his crazy fevers and low blood sugars. This would all be so much easier to handle had we not had the glimpse of going home or the constant reminder of the christmas countdown. Two weeks ago we moved my parents and the girls back home, everyone has moved back in now. Santa is getting his work out in with our family this year. He brought presents here, then took them back to Greer, now he's bringing them back to Charleston but still holding out hope that he might have to take them back to Greer before Christmas day. Milo and I broke down on Tuesday night and bought a Christmas tree, lights, ornaments, and a bucket (there were no tree stands left in all of Charleston). We put up and decorated the tree with the girls Tuesday night because Milo was leaving to head back to Greer on Wednesday morning. The hope is for Milo to come pick us ALL up on Monday.

I was reminded this week that we are to pray, "Give us this day our daily bread." Not give us tomorrow, or Christmas day, but this day. Milo and I continue to be so grateful that we are even entertaining the thoughts of bringing Josiah home. As we entertain those thoughts our hearts are aching for families that are not there yet. I ask once again for prayer for one sweet family in particular. Please pray for baby Dean and his parents, Nate and Billie. Dean has been Josiah's partner in crime here for about 5 months. The doctors told us way back when I was pregnant that they get maybe 1 case like Josiah a year. But we've been sitting for the last 5 months right next to Dean who has the exact same condition as Josiah, HLHS with an intact septum. Sweet baby Dean needs our prayers for healing and his parents need prayers of comfort as they received heart breaking news yesterday. I joked yesterday about wanting the kind of Christmas miracle they make Hallmark movies out of for Josiah to get home for Christmas, but I would gladly give up our Christmas miracle for Dean. Please pray for him.

-A Heart that Holds On

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