Flowing Tears

Sometimes the tears come unexpectedly. Tonight, they've been flowing freely for over an hour.

Caris is still struggling with intense abdominal pain that just won't go away. She has been on an adult dose of Entocort (Crohn's medication) for 7-8 weeks (with a max of 90 days on this one), and though it seemed to help a bit in the beginning, the pain returned in full throttle about 3 weeks ago. Watching her in pain, seeing her personality change. . . it was too much for this mom.

I emailed her pediatric GI doctor last Thursday to tell him we were ready to try the milk-free route, one of only two ideas he had remaining. He is so good to respond quickly, and Caris has now been milk and soy-free for 7 days.

Apparently, I had talked myself into believing that milk was the real culprit. After eliminating gluten, cutting out all refined sugars and additives, and more. . . I had begun to believe that if I were only a "better mom," willing to bite the bullet and eliminate milk, her symptoms would go away. This trial has been so long in coming because Caris LOVES sour cream, yogurt, cheese - they are mainstays of her diet, and she eats 6-8 times per day! I knew it would be harder than the gluten-free attempt. She was quite compliant with that for a full 16 days. This week, she has been more than willing to try my new recipes and hasn't been sad when her sisters have had yogurt or cheese. She's done great with it. . . but there's been NO change.

In fact, I would say that her symptoms have continued to trend upward since the complaining returned several weeks ago. What makes me most sad of all is the way her smile has gone away. After putting her down for the night, I literally left her room and wept. The tears have not ceased yet.

How can I, as her mom, know that she's in pain and do so little to change that? How must she feel, knowing I know that she's in pain, asking us to do anything to change it, and yet getting nowhere? When the complaining comes multiple times every quarter-hour, a parent begins to try anything to appease or distract, and then I feel guilty for overlooking her pain. . .if only I knew what to DO to actually address the need!

Caris's sweet attitude tonight really broke my heart. A little while after we put her down (and also following two bedtime snacks), she called sweetly, "Mom?" From my bedroom I called back, "Good night, Caris. It's time for sleeping." (not an unusual drill) She called again, "Mom?" "Yes, Caris, what is it?" "Mom, can you please come here so I can tell you something?"

No begging. No demanding. Just "can you please?"

I suspected it was yet another tummy complaint, but walked down the hallway nonetheless.

"Mom, could I please have just a little something to eat. My tummy really hurts."

Ugghh. I took the time yet again to explain that the pain she feels must be the food moving through her system, not hunger. Her cues are so confused. How disheartening it must be to never be able to define what's really going on inside.

I told her again about Dr. Fuchs' final idea of us spending some time in Columbus at the Functional Abdominal Pain for Children center there. Though it seems far-fetched, I am willing. She asked again for food, and I rubbed peppermint oil on her belly instead, and began to tell her once more how very much I love her and how I wish there was anything at all I could do after all of my questions, all of my reading, all of my prayers, to HELP her.

I prayed over Caris and asked our Great Physician, the One Who created her, to bring her freedom from the pain.

Caris was only 2 when this pain began to plague her. It breaks my heart to know that over half her life has been fraught with abdominal pain. I've grown afraid that these will be her most vivid memories of childhood. Her personality, her outlook, her attitude all change during "seasons" of greater discomfort. Oh, how I wish I could give her her smile back. I told her so, and she replied, "Well, I do feel like smiling sometimes when I wear my slippery socks and slide around on the floor."

As I began to cry, she turned over to try again to fall asleep, saying, "You're going to make me cry, Mom." I took my tears back to my bedroom, and cried all the way through half a box of kleenex and tonight's read-aloud chapter. Callie and Coplea tried to tell me I've done all I can for her, that (in Coplea's words) "even the specialist is out of ideas." But it doesn't make my heart hurt less for my child.

I write all of this to capture to some small degree the emotions I've been feeling surrounding my inability to bring relief to this precious daughter of mine. Hopefully some day I'll read it and breathe deeply, a sigh of relief, knowing that the issues have been resolved and Caris is once again carefree.

Lord, may that day come soon.