Just when I think there's no hope for Cale and it seems like every day is an uphill climb for him, God shines His light on us and reminds me that with Him there is always HOPE.
For the past four months we have been doing some pretty intensive speech therapy with Cale. Although it's called "speech" therapy it really only focuses on his eating rather than his talking. Like I've said before he gets his main nutrition from a drink called Pediasure but we have been working very hard towards getting him to eat more solid foods. When we first began with therapy Cale couldn't even eat baby food...you know, the nasty pureed stuff in the little jars. We considered it a miracle if he took ONE bite and danced around the kitchen like idiots celebrating. We thought maybe it was the taste or the texture he didn't like because he wouldn't even touch the stuff, and if he did get food into his mouth he would push it out instantly with his tongue. Since we've started the speech therapy, though, we've learned it has nothing to do with the taste but rather the lack of control he has over his tongue. Just like he has problems "motor planning" to perform gross motor functions, he has the same problem with his tongue; he doesn't quite have the control to move the food around in his mouth to get it back far enough to swallow. He's wanted to eat all along but has been paralyzed with the fear of choking. To try and understand what it's like for him, I tried putting food in my mouth without using my tongue to move it around and believe me, you feel like you're going to choke! No wonder he never wanted to eat.
Well now he has the control he needs to be able to eat pureed foods. It took a LONG time and A LOT of hard work and practice, but he now eats those foods pretty well. HOWEVER, he sometimes gets a stubborn streak in him and decides to not eat all together. Very frustrating. He started one of his stubborn streaks a few days ago and since these come and go quite frequently, Alex and I were both ready to throw in the towel. No more practicing. No more fighting with him to get him to eat. No more stressing over how to get high calorie foods in him. WE'RE DONE! If Cale doesn't want to eat, we are done trying to make him.
Those were our thoughts anyhow.
Just after having said that, the next day I felt too guilty to give up on him. I sat him in his high chair wondering why on earth I was volunteering to go to battle with him - knowing the next ten minutes would undoubtedly ruin the rest of my day - when I offered him a bite of pudding. He opened his mouth, took a bite, swallowed, and then asked for more. WHAT???!!! This is not the same kid that I was dealing with yesterday. He didn't try to grab the spoon, he didn't try and play imaginary games to distract me from feeding him, he didn't try and squirm out of his high chair - he simply sat there and let me feed him...ALL of it! He finished his pudding and seemed to still be hungry so I made him a smoothie of bananas, pears, yogurt, and orange juice. Since he did so well I decided to let him try and feed himself. (He gets EXTREMELY happy when you let him hold the spoon and do it himself!) I normally don't expect much from him at this point other than dreading how messy he's going to get. He doesn't yet have the skills to self-feed and so right now it's just a fun thing for him to start practicing. Well, when I gave him the spoon he tried to dip it into the bowel to get another bite. I helped him with this part but let him do the rest. He brought the spoon to this mouth, took an actual GOOD bite, and tried to scoop more onto the spoon again!!! For those of you who don't know Cale very well, this is a HUGE accomplishment!
A few days ago I was in tears wondering why on earth EVERYTHING has to be so hard for him. Why can't SOMETHING come easy to him? Why does he need therapy to accomplish things that come so easy to others? I sometimes get so angry with God because I know He could fix this if He wanted to. Why is He punishing MY family? I also get angry because some days are so GOOD and I become so inflated with hope, only to have the next day crumble any foundation of hope I have worked so hard at building. But then God steps in and gives me glimpses of hope - His hope - like Cale eating again and being able to take one bite all by himself. I know I will get angry again and I will feel like giving up. Cale will undoubtedly frustrate me to my very ends, but God will faithfully answer - like He always does - and give me a taste of the hope He promises to give to those who love Him.
For me, hope comes in packages like a simple bite, an unbalanced step, a high-five met halfway, or two little hands saying "please". God has a plan for Cale. A perfect plan. What more hope do I need than that?