We saw Caroline's pulmonologist today and received the official diagnosis. NeHi. No, not a soda drink. Neuroendecrine hyperplasia of infancy. Today I feel at rest with a diagnosis. We are so grateful that this lung disease is treatable with oxygen support and she should outgrow it by the age of 5. Caroline has a little cough today so she had a chest x ray and we are doing a two night oxygen/heart rate study for the next two nights since Caroline's heart rate monitor has been going off during the night. We will also repeat her sleep study next month to determine if her night time oxygen requirement has changed any since July.
A family friend lost his son right after birth on Saturday and our hearts grieve for their family. I will never forget the fear I felt when I told Jay on July 5 that I felt like Caroline was slipping away or the aching my heart felt when I surrendered Caroline's life to the Father in remembrance of Abraham's desire to love God even more than his own son. Still, I have such great joy and delight in seeing Caroline smile, roll over, and giggle every day. I wish I had words to comfort our friends who have lost their sweet boy. All I know is God's grace really is sufficient. I know they will have the deep privilege to experience this.
Last week before we received Caroline's final diagnosis, I wrote this but never had the chance to publish the post. I pray this encourages you or someone you know to trust in the giver of such grace that we have experienced as more than sufficient. And in that, I too will boast. (2 Cor. 12:9).
(From Wed., Sept. 5)
I don't like not knowing what is going on. I don't like feeling out of control. I don't like feeling anxious. I don't like uncertainty. I don't like wondering if maybe they found something else and it's not such a good prognosis. And then I am reminded of a friend's statement before he took his family to Africa to serve as missionaries, "Lord, help my unbelief."
Many years ago I sat on the front row in a Prison Epistles class taught by a really good looking young professor and yes, I got an A in the class. This professor equated anxiety to sin stating that Jesus explicitly tells us, "do not be anxious about anything," (Matt. 6) and yet, our wandering hearts resort to such anxiety as the first response to anything out of our control. I still fight this professor regarding the sin definition but I do think my anxiety reflects the condition of my heart. It's not just anxiety, it's unbelief.
Jesus explicitly tells us to not be anxious but to believe instead. To believe in what? To believe that everything is going to be ok? To believe the test results will change, the marriage will magically look like the Brady's, the wandering child will return and apologize for the hurt he's caused, or the desire for just one more smoke will cease? Or maybe it's to believe like the little engine that could, "I think I can, I think I can" and receive the results we want. I don't think Jesus is asking us to believe in such things we can see, but instead he is asking us to believe in the things unseen and to believe in Him, the great I Am. (Heb. 11).
So, today, I take my anxiety, unbelief, and sin (if you will), to the great I Am. I don't get it, I don't understand, and oh how I want some definite answers, but I declare that I do believe in Jesus Christ, the Maker of the Universe in whom we live and move and have our being who being fully God, came to Earth as a lowly being and surrendered Himself to the cross for my unbelief, for my anxiety so that on the third day He could rise overcoming fear, anxiety, and even death. We put our hope and our belief not in circumstantial change, but in the One who is so much bigger than our circumstances. Jesus, help my unbelief! Thank you that there is no magic quantity of faith you require and that Your will is not changed based on what I can muster up. I place my trust in You, God of heaven and Earth who was and is and is to come. To You be all glory in my life and in the life of our family.
P.S. The professor is my husband so it's ok I called him good looking.
