Thank you for all the lovely emails this weekend - we feel the love and prayers for our little family and it is certainly making the every day easier to deal with. A huge thanks for all the offers of food - we will definitely enjoy that help!
Our family has some news: our house is for sale! Here is a link to see our home profile with our realtor, Bill. See his webpage at:
Are we nuts? Well, we were planning to list our home. Since Noah and I are living in the hospital, it is an easy time to keep it clean and show it. We had been decluttering and cleaning lately (by-product of being home all the time!) so it did seem like the time to take the plunge. We don't yet have a home in mind to purchase. One step at a time.
I should also update you on my work situation. My school board, FFCA, has graciously granted me an additional year of unpaid parental leave. Thank you! One more worry lifted. Jared continues to do well in his contracting work - we feel blessed.
Noah is having a little nap before rounds begin. I'm sure we will be going to 2 hour feeds today. Noah is up to 40 ml of Neocate every hour, 24 hours a day (continuous feeds). We are slowly working our way back to where we were a week after his fundo/g-tube surgery. He had a retch yesterday but not since then. They have taken him off the medication that was administered on Friday and so now he is only on his anti-reflux meds. They have also saline locked his IV so he is no longer receiving IV fluids. Please pray that Noah will have a bowel movement on his own so that they won't continue to give him a suppository again.
And now for some blogging therapy. I was having a tough day yesterday. I was frustrated, and crying and confused. Jared was able to figure out why. He stated it so simply: "we just don't want to have to tube feed." It isn't about being in the hospital again. It isn't about seeing Dr. after Dr. It is having to accept a way of life that is so different from the norm. Now, I KNOW many of you have your own experiences. I am thinking of my dear friends/family who struggle with children who have severe disabilities, have experienced the loss of a child, struggle with infertility, battle cancer. I acknowledge that tube-feeding is nothing compared to those challenges. However, it is our journey and I've been reminded time and time by friends and family not to minimize the challenge we are facing.
To that end, my mom brought me a book called "Joy in the Journey" by Guy Rice Doud. I'm really blessed to have two moms who read good books and suggest them to me - thanks Mom D. and Mom V!! Anyways, Guy is a really neat author, a teacher, and someone who knows a thing or two about difficult life journeys. I was taken with the chapter labeled "Starting Over/Letting Go." Can you relate?
Here is Guy's take on letting go:
"Letting go means lightening our loads and abandoning all the excess baggage of the past, especially the bags with the tags marked guilt, shame, bitterness and unforgiveness."
"Letting go means being transformed by the 'renewing of your mind'. It means a whole new way of thinking."
"Letting go means praying, 'Thy will be done,' and meaning it."
"Letting go means not praying, 'Lord give me all these things I need!' Rather, we pray, 'Lord, give me what YOU know I need!" His grace alone is sufficient for our every need."
NOW THE KICKER!!
"Letting go, we surrender our need for control."
How can I pray for you today, in your own journey of letting go? Email or facebook me!
Dar (and Jared and Mr. smiles aka Noah)