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Tuesday, August 2, 2011


The other night, I was talking to my grandpa on the phone like I do every Sunday night. As always, he asked, "How's that little Raya doing?" I let out a disgruntled little laugh and said, "Oh, she's doing just FABULOUS." and explained to him that none of the complications we were anticipating from her tube change came to fruition and how frustrated I was feeling that she could have so many problems for so long and then suddenly just be fine. I said, "This is too easy. It just seems like after everything we've gone through and everything we've had to do in the last year and a half, this should be harder or we should have to do something big in order to move forward. Grandpa, can it really be that easy?" He chuckled and said, "Well, I guess sometimes it just is, Brandis."

That conversation got me thinking about a story from the Bible. Naaman was "captain of the host of the king of Syria". He was a very important person, but he had the dreaded disease of leprosy. That made him unclean in the eyes of society. He heard that there was a prophet in Samaria who could cleanse him of his leprosy, so he took his chariots, servants and horses and went to see Elisha the prophet. Elisha sent a messenger to Naaman who told him, "Go and wash in Jordan seven times, and thy flesh shall come again to thee, and thou shalt be clean." (2 Kings 5:10) When Naaman heard that, he became angry. "But Naaman was wroth, and went away, and said, Behold, I thought, He will surely come out to me, and stand, and call on the name of the Lord his God, and strike his hand over the place, and recover the leper.
“Are not Abana and Pharpar, rivers of Damascus, better than all the waters of Israel? may I not wash in them, and be clean? So he turned and went away in a rage.” (2 Kgs. 5:11–12.)
Why was Naaman angry? He wanted something bigger. He wanted the pomp and circumstance that he felt he was worthy of. He wanted "a dramatic miracle at the hand of the prophet" rather than something as simple as bathing in a river seven times. (reference) Eventually, he humbled himself and followed the counsel of the prophet and was cleansed of the horrible disease.
I have done a lot of thinking in the past 5 days. After all of these difficult months filled with doctor appointments, therapy appointments, weight checks, blood draws, diagnostic imaging, cleaning up more vomit than I ever could have imagined, and all of the ups and downs that have come with all of that, can it really be so simple as changing her back to a regular G tube and her stomach can suddenly tolerate it? Shouldn't there be some grand event to bring everything to a resolution? Sometimes, it just IS that simple. In the book of Alma, it reads, "Now ye may suppose that this is foolishness in me; but behold I say unto you that by small and simple things are great things brought to pass; and small means in many instances doth confound the wise.
And the Lord God doth work by means to bring about his great and eternal purposes; and by very small means the Lord doth confound the wise and bringeth about the salvation of many souls." (Alma 37:6-7)
Maybe all of the things we've gone through up to this point ARE the "grand event" that I've been feeling like we needed to have, or maybe I've just gotten so used to the chaos that calmness is uncomfortable for me now. And maybe something as small and simple as feeding Raya through her intestine for 9 1/2 months was great enough to allow her stomach to prepare to digest food like it should. Why? We may never know. Sometimes things happen (good or bad) with no explanation.

As much as we would like explanations, the fact of the matter is that God doesn't HAVE to explain Himself to us. He has reasons for everything but that doesn't mean that we always need to understand or even know those reasons right away, and we may never know them in this life. It takes a lot of humility to accept that, which is something that I am obviously still working on. However, I believe that if we take what we are given with the knowledge and faith that it is given to us by God for our good, that faith will be a catalyst for us to learn things about ourselves that we wouldn't have otherwise been able to learn. During that journey, we will meet other people who are starting out on a similar road and we will be able to help them in ways that no one else can because of the experiences we have had.
This is not to say that I am completely "over it". I still would like to understand what has caused all of the pain & suffering she has experienced during her 20.75 months of life and it still bothers me that the mystery ailment seems to have resolved itself. I still have moments where I look at her (like while she's standing on the kitchen table again, shoving somebody's abandoned lunch in her mouth, which there is no chance of her chewing and swallowing) and think to myself "WHAT THE HECK IS HER DEAL??"

The fact that she has done well over the past 5 days is great, but reality is that there is always a possibility of certain complications with G tubes, so although the worst is probably over for Raya, there will probably still be bumps in the road. Overall though, we really are thrilled at the progress she is making and especially the leaps and bounds she has made over the past 2 months. I have even started to allow myself to entertain thoughts of Raya being able to go to kindergarten without a feeding tube. It would be fine if she still had it then, but I'm starting to have a little glimmer of hope that maybe she won't.
She made her grand return to occupational therapy today. I say it was a grand return because she was in desperate need of OT. She's been a big ol' sensory mess for the last 3 weeks. After her giant hour long meltdown at PT on Friday, I was afraid she'd do a repeat performance today but she did great. She was a little bashful at first but by the time we got halfway through the session, she was playing her little heart out and happier than I've seen her in 3 weeks. She even WILLINGLY crawled through the little pop-up tunnel that normally sends her into frantics and had a smile on her face the whole time. It was obvious that all of the things her therapist did with her today really helped her to feel better and I'm SO glad we're back into our therapies.
We also got to meet our new feeding therapist today. We have one that we've been seeing since Raya first started early intervention services when she was about 5 months old, but she's so busy right now that she can't come more often than every other week. Luckily, the clinic where we do OT at had a feeding therapist (who I've heard great things about) who happened to have an opening for home therapy every other week, so we're going to alternate weeks between the two therapists. I'm really excited about having more feeding therapy now that Raya is finally at a point where she's ready to be pushed a little more.

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