The doctors announced that Chaim Boruch would need swallow therapy.
Hmmmm, this should be interesting, I thought, as I conjured up creative ways to help Chaim Boruch follow simple directions for swallowing when, the fact is, it’s challenging enough for him to simply follow directions for putting his backpack on the table.
So last week at a follow-up appointment, the doctors mixed some liquid dye into his applesauce, allowing us to see via X-ray if he is ready to begin swallow therapy.
Very slowly, they fed him increasing amounts of applesauce until they reached an amount he could swallow with ease and efficiency. And it was an extremely fine line between strengthening his swallowing ability and G‑dforbid increasing the risks of food entering his lungs, which could result in pneumonia and other health issues.
After a discussion and a closer look at the x-ray results, the doctors decided that Chaim Boruch could begin swallow therapy. The only way for his muscles to become stronger was to use them; and so, on that very day we were given the go-ahead to begin the therapy that, G‑d willing, will lead to a full ability to eat normally without a feeding tube.
What would be the designated volume of pureed food to be given to Chaim Boruch, we asked?
One quarter of a teaspoon in a bite, with a total of eight bites in all.
My mind read the instructions as: two teaspoons of hope, faith, prayer and dreams coming true.
But I was nervous and scared.
There was much I had to watch out for. Even though this was the start of a new phase, and I had yearned for this moment, I had also been basking in the joy of getting things back to “normal.” I, for one, didn’t feel like shaking things up with the endless potential hazards that were mixed into a quarter teaspoon of applesauce.
So, I pushed off the task for a couple of days, sorting out my own feelings as a mother, and thinking about when would be the “right” time to begin. I worried about Chaim Boruch not wanting to eat after the experiences he had recently gone through. I worried about the possibility that he would want more than two teaspoons of food a day. How could I explain all of this? Would he understand? Would every bite lead to a tantrum and a meltdown?
There have been many wondrous moments in Chaim Boruch’s life that have occurred on Shabbat, a time when extra holiness exists in the world. And again, it was on Shabbat that we experienced something special.
The candles were lit, illuminating our faces at the table with a warm glow. The kids were eating challah and their favorite salads, and sipping grape juice, savoring the tastes they await all week.
I turned to Chaim Boruch and asked him if he would like to eat a little applesauce, just “small bites” like the doctor said.
He nodded with excitement and a grin that stretched from ear to ear. I said the blessing for him while he dutifully swayed back and forth, mimicking the motions of prayer.
Then his little shaky arm spooned one quarter of a teaspoon of applesauce slowly into his mouth. I could see the effort he made to close his lips on the spoon, push the food back into his mouth and then swallow with concentration.
Wow! It’s been six months since he tasted food. As tears filled my eyes I could only imagine how very sweet applesauce could taste, and how very good it must feel to eat.
After his first swallow, Chaim Boruch erupted with a magnificent “Aaaaaahhhhhh,” while pointing to each of the other kids, who were still holding their breaths. And then, as if on cue, the kids all burst into cheers and laughter and congratulations on this very special occasion.
We were so proud of him, and so grateful to G‑d for this day.
One quarter teaspoon.
One quarter of my heart.
Filled to the brim with hope and trust.