After my weekend retreat home to spend time with the family, I returned to find Ned in a little onesie! It really isn't an indication of any particular progress; however, it just seemed so normal for my son to wear some clothes. He has been lying around in a diaper for a month so a shirt was just another tiny step in the direction of doing what other babies do....it was a beautiful site!
I stopped by to visit April and her husband Russell following their visit to CHOP last week. They received an almost identical prognosis to what we were told to expect with Ned. At this point, they are just trying to decide where to deliver and finding their comfort zone, or some semblance of it. I remember when Ned was first diagnosed and I kept telling God, "I know I'm going to have to put him in your hands, but I just need to exhaust all my resources first before I can let him go." All of that is just part of the process of faith.
I think most people think that faith is some spiritual sense that is miraculously allotted to some individuals more than others. Faith is basically nothing more than an intentional choice. There is nothing superhuman about it. Faith actually requires humans to be more submissive and obedient. Faith is built during hard times, struggles and difficulties when you choose to trust and follow Jesus in the midst of darkness. Although you can't see a light at the end of the tunnel and you aren't given any certainties regarding the outcome, you willingly relinquish your life into His hands. Such steps of faith are never easy, not for anyone. Hebrews 11:1 says: "NOW FAITH is the assurance (the confirmation, the title deed) of the things [we] hope for, being the proof of things [we] do not see and the conviction of their reality [faith perceiving as real fact what is not revealed to the senses]. "
There were days when I was pregnant with Ned that my faith was very weak and fragile. I was almost embarrassed that I couldn't hold on to the promises of God any better than I could. There were days when my faith was so weak that I was overcome by unspeakable thoughts all day. hHey were so intense and upsetting, I never mentioned it to anyone, not because I wanted to appear more faithful and self-righteous, but I just couldn't bring myself to life my thoughts into words. There were days on my way home from work, I would find myself consumed with the potential that Ned may not be able to survive. I gave thought to his funeral or graveside service, burial clothes, music, speakers, etc. I never even mentioned these things to Travis. Like I said, faith is a choice. It is actually a series of choices which lead you into a deeper relationship with the Father. I hope to be able to continue choosing to follow God and accept the blessings He has in store for me and my family. I was thinking about the Hebrews and how God had given saved them so many times, yet when they got to the edge of the promised land, they were too afraid of the giants to go in and claim it. I hope that with as many miracles as God has shown me and bestowed upon my family, I will always be able to trust Him and follow him!
When I was pregnant, there was a song that I would play for and sing to Ned almost every day. It is by Big Tent Revival (wouldn't that make a great t-shirt?) and it was called Choose Life. While I sang it to him, I meant for him to take it literally, but as for me, it is a choice I must make daily so that I can recieve the life He has in store for me, I want to choose to live in my promised land!
Choose Life, that you might live
The life that he gives, He gives you forever;
Choose life, for the way that is true
and the one who loves you, He loves you for ever;
We're still weaning off the vent slowly, but surely. Our two main, remaining prayer requests are breathing and eating. We need him to take about 12cc's per hour on the feeds before we can stop the TPN and of course we need him to be extubated and stable. Please keep these two issues in your prayers. I appreciate them all!!
Besty, Travis, Jack & Ned