Meal time can be a challenge in the Promise House for a variety of reasons. Sometimes behavior is the problem, with tantrums when there is only 2 bites left and the child sees there will soon be no food in the bowl or insisting on lying down to eat when a child is capable of sitting but just doesn’t feel like it. For others, eating is a mechanical challenge, as they just cannot command their mouths and throats to cooperate.
J is 8 years old and has cerebral palsy. Most of the time, he can’t seem to coordinate his oral muscles and a good part of his meal ends up on his shirt. J can move his arms and legs, but they are very spastic, and he cannot move them in a way to propel himself in any manner. He does not communicate with words, but if you stop and really try to understand him, he is always communicating. At lunch today, I could hardly bear to watch J being fed. His eyes were full of fear at just the sight of the bowl and spoon and the whole event consisted of a lot of crying, coughing, writhing to the point of nearly falling out of his seat, and not a whole lot of food actually being eaten. So at dinner, I figured if I expect the nannies to do any better, I should probably figure out if I can do it myself. Let me tell you how it went.
The beginning was rough. Pretty rough. There was a lot of jaw clenching and lip pursing and the few times I got that little plastic baby spoon inside, his teeth clamped down so hard and I could actually hear grinding at the back of his jaw. My wheels were turning frantically as the nannies all watched to see if I could walk the walk. I tried to think about why he would be so fearful of mealtime, what it would be like in his place, when I made my biggest mistake. His head was turned to the opposite side with his mouth wide open and I saw my chance to slip a quick bite in. Oh, how I regretted that decision. The crying that ensued was not anger or pain, but a heart-wrenching ‘you betrayed me! How could you do that to me?’ cry. I wanted to bawl right with him and quickly whispered “Mwen regret” (I’m sorry) over and over in his ear. A mistake, perhaps, but also an important realization. J has little to no control over anything in his life. Everything happens to him and he really has no say. Not even having a say in what goes into your mouth and when must be so unnerving and frustrating. So I told J it was up to him. I would wait until he was ready to eat and not force anything into his mouth. And the most amazing thing happened. He opened his mouth right up and swallowed nearly everything without coughing or crying or any protest at all. Then if he wasn’t ready for another bite, he would purse his lips closed so I wouldn’t give him a bite. Before every bite, I asked J if he was ready. It took a lot of time and a lot of patience but it was so pleasant and I felt like we were finally respecting Joshua and giving him the dignity he deserves. This probably sounds like no big deal to most of you, but this is big and significant. As I told Wilson about it later in the evening, I couldn’t help but cry while sharing about our sweet J and the wonderful possibilities ahead of him, but also the frustration and fear he must experience so often.
And that’s why we’re here. Because J deserves to be treated as a fearfully and wonderfully made work of art. It’s only been a week and we’re already realizing how tiring and difficult this will be. This was only a glimpse of a long, hard day. But that glimpse was all God needed to show me today to give me the strength and conviction to keep moving forward.