Sweet moments in the pain

​In order to understand the sweet significance of this picture you will need a synopsis of the past several days. Since about Saturday afternoon, Noah has been having these waves of irrationality and emotional distress that are very difficult for me and John to handle. He gets really emotionally involved in the shows he enjoys watching and cries if characters are in trouble. He can't make a decision about what he wants or needs, and he says things that don't make very much sense. He has often told me and John that he doesn't love us anymore. We have come to understand that these changes in his personality are most likely from the medication and the changes taking place in his brain, affecting his frontal lobe.  We have also learned that the best way to handle this change is to stay patient, remain calm, and try to appease him and comfort him to the best of our ability, according to what we think he needs at the time. We know that Noah isn't telling us he doesn't love us...that's not him at all. But it is a difficult and stressful encounter, and thank goodness when they come they will also eventually go away. So when he begins to wake up from a long sleep we don't know really what to expect from him: our sweet Noah and his funny, playful personality or the "Morphine Man" who is quite unpredictable. In the moment I took the picture, Noah had just woke up and said he needed to snuggle Dad. Neither John nor myself have had a true snuggle from him in days, because since Noah has been sick he has needed his space. It was a very sweet moment. 
Last night started what seems to be a slight upward climb. Noah's pre-school teacher "Ms. Ehwishabet" (Elizabeth) recorded the class singing one of Noah's favorite songs and then had each classmate say hi, with a final wish that he feels better and an affirmation that he is loved. Noah was sleeping when I watched it, but his eyes quickly opened and he said, "I wanna see." Keep in mind he had been asleep for the majority of the previous 48 hours. He watched the entire video twice, sitting up, and then said, "I wanna go with you, Dad" and agreed to ride in a wagon while John and I walked around downstairs. Seeing his classmates, teachers, and knowing that they miss him and love him gave Noah the hope he needed to push through some pain and lethargy and get moving. It was awesome. He has still had pain and vomiting last night and this morning, but his morphine drip was dialed down a bit, and with an increased steroid dose he feels better now than he has in almost a week. He has been awake much more today, interacting with the doctors, nurses, and us in such a sweet way. Dr. Reddy called him "kiddo" today and he replied, "No, that's not my name! My name is Noah Crowe." We caught a video of him saying, "Hey Daddy, I..love...you. So....much." (His speech is slower as he stutters and sometimes struggles to find the right word.) My heart just wants to explode in these moments, and I am etching them in my memory. Our hospice nurse and the doctors on call are working to get Noah a small pump that he can carry with him, and hopefully get him set up with that so we can be on our way home later this afternoon. Noah is afraid to go home today, he told us, because his head is still hurting. We are doing our best to reassure him that the special nurse that will come to our house is going to take care of him, along with Mom and Dad, just like he's being cared for here...and with a much more comfortable bed and lots of toys! Please pray that the transition from hospital to home is an easy one for us all, and that we are all comfortable with the care that Noah will receive there. We've seen what prayers can do, so please don't stop! Lots of love to you all. 

"This child can face uncertain days because He lives!" - Hymn "Because He Lives"

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