Monday, May 2, 2011

Tired and weary...yet humbled

We are going on week 4 in Jackson...seems like it has been much longer than that. We are truly thankful for the care Selah is receiving. We are thankful for the opportunity to stay at the Ronald McDonald house. We know we are blessed but this seems to be the point in this part of the journey where we are battling growing tired and weary. Our days are staying pretty busy. They consist of going back and forth between the RMCD house and the NICU. We are now training on providing care for Selah...her trach, g tube, general care, etc. We are talking with the team about when we may possibly go home...maybe a few weeks. We are trying to take in all the information and process all that we will need to do in order to care for Selah. At times it has been overwhelming and honestly freaked me out. She is in such a controlled and sterile environment now. the thought of taking her out of it and having it in our hands is scary. But, they are trying to give us the experience and training we need in order for us to feel comfortable. We are also trying to meet with some of the different specialist that she will need. We will meet with the doctors on Wednesday to discuss the jaw distraction surgery. We aren't sure what it will entail or the timeline really so we hope to get these answers and more at our visit on Wednesday.
 Selah has still been doing pretty good. She seems to be tolerating her feeds well and is slowly gaining weight. She seems to be having less trouble with her respirations...not breathing as rapid. Unfortunately her hair is not looking to much better :(...she is still beautiful though. The ENT and audiologist did talk with us about hearing aids for her. She does appear to have a significant hearing loss in both the severe loss range. So, that is something we will follow up ongoing visits. I do believe she is comforted by us when we talk to her so I know there is some hearing there. We will just see as she grows what all is going on.
So, that is what is happening as of now...I think that's all :). As I mentioned earlier, I have struggled with being a little, no a lot, tired and weary lately. We haven't been sleeping much so that doesn't help. I tend to try to take it all in and then my mind races with thoughts and questions and concerns. I also have not been taking the time to get away with God and just talk to him, pray to him, read his word...I can tell too. I picked up my devotional and Bible today and the word I read was exactly what I needed to hear and applied to exactly the situation, the thoughts, the concerns on my mind and heart. As I tried to soak it in all, the "stuff" seemed to fade away. Oh how I miss this personal and intimate time with our Heavenly Father. I tried to let it all out to him, mostly just in an unspoken plea for him to hear it all. As I tried to listen and just be, He reminded me of his word in Matthew 11:28-30...going to try to paraphrase..."Come to me all who are tired and weary and I will give you rest. Take my yoke upon you and learn from me for I am gentle and my yoke is easy and my burden is light." I read these words of truth and knew God was reminding me to not stop "coming" to him. I need this time with and sustainment for the soul. He knows I am tired and he knows I am weary. He knows all the "stuff" and he wants me to keep "bringing" to him. As I did and do, his peace and hope fill me again. All the stuff that seems to be a burden are things that he wants to teach me, to strengthen me, to refine me, to bless me.
I started thinking about all the things I have been so overwhelmed and worried about and he began to bring to light all of the false and unnecessary concerns related to that. I was reminded again that his hand continues to be on us and on Selah. His hand continues to be mighty to save and all powerful. His hand continues to bless and show compassion and grace. I began to realize how truly blessed we are.
In the past few weeks we've seen many families who don't have their baby anymore. These different families who have been clinging to the hope that their baby will get better or "make it" only see their precious baby's life fade away. These families watch helplessly as their precious little one's ends. We've seen it all too much and close and it is heartbreaking. Our hearts ache for these families and we just try to pray for comfort over them...I often don't even know what to pray...just a silent prayer of mercy and hope over them.
As I was reminded of this I realized that I need to be so thankful for the blessing of precious Selah...a miracle, an answer our prayers.

Thank you again for all your continued support and prayers...we are so humbled. Much love!!!