Long season

My aunt told me 'don't worry, better days are coming soon'... I hoped for those 'better days' but some days it felt like they would never get here. I have going around in circles.

When we realized that Levi would need his trache longer than we had expected and hoped for, I decided to let my hair grow. I wanted something physical to mark me, just like my son had his trache. And the day he gets it out I would cut my hair and the long and difficult season would be over. The longest I thought this process would last was 6 months. Then a year. Then two years. We have now entered into 2 and 1/2 years and the end is not really in sight. As most of you know, we didn't get the news that we were expecting from Levi's Doctors at Vanderbuilt. The change that we have seen, was not as evident as we hoped for and really, expected. So they sent me a couple of messages saying that we will return to give Levi his 10 packs of Splenda a day with the steroid. And 14 days of antibiotics just in case... I. Was. Furious.... just because they didn't see much change doesn't mean that what I have seen every day for the past two months isn't real. He is a different boy! He is eating, that is a Miracle! He is not throwing up after every meal. That is another miracle! He isn't gaging and chocking on every bite he eats, yet another miracle! But they spend 15 minutes with him in an operating room and determine that there is no improvement.

I have experienced freedom like never before. Or maybe this is what I used to feel but hadn't since the boys' birth. Yesterday I told Levi's ENT(ear nose and throat Doctor) what was on my mind and heart. It was awesome! I didn't want to be disrespectful, and I don't think I was. But I did show SOME of my frustration. The funny thing is that he told me not to wait till I was over the edge before talking to them... I told him that had happened three months ago and this was me cooled off. He then thanked me for waiting! LOL!

So, freedom... Healing... a New Season... Thank you GOD!