Daniel on Mission

This is the post I think those of you who know Daniel will really enjoy. As we all know, Daniel has some limitations, but what Daniel has in abundance is personality and usually a good bit of joy. Daniel loves people and, after a few minutes, people usually love Daniel.

When we arrived on the EMU (epilepsy monitoring unit), they were ready for Daniel, with a room very near the nurses’ station that had a sweet, personalized name tag outside the door. Before we even got to our room Daniel was greeting people and asking questions. Some of the rooms had doors open and Daniel asked about the kids in those rooms. The room directly across from Daniel’s room had a little baby in it, and Daniel was concerned about that baby right away. From time to time that first afternoon, we heard the baby cry and at some point the baby’s parents left to get some dinner. The baby was with a volunteer and nurses were keeping a close eye on the baby, but Daniel kept asking when the baby’s parents would be back and after a while he couldn’t bear the baby crying any longer, so he prayed for the baby. He prayed that the baby would be comforted and that the baby would get to go home soon. He was thrilled the next morning when the baby was discharged to go home.

The nurse on duty when Daniel was admitted was Nurse Jen, and we were blessed to have her as Daniel’s nurse for four or five days of our stay. Daniel asked her lots of questions as she was settling us in our room and within minutes she was saying that she loved him already.  Soon, it was time for the electrodes to be placed on his head, and the EEG tech, Dennis, stopped by to meet Daniel. Daniel struck up a conversation with him and soon they were buddies. Dennis stopped by numerous times to say hi to Daniel and, of course, from time to time to freshen up the leads. Another EEG tech, a young guy named Chris, also was drawn in and became Daniel’s friend.   There was a third year resident who was our primary point of contact those first few days and Daniel established a really friendly rapport with him as well. He was there for a few of Daniel’s tearful moments, especially when Daniel was sad about David having to leave on Friday afternoon. This young doctor held Daniel’s hand and patted his head and was a real source of comfort for Daniel that day. He stopped in again later to check on Daniel before he went home, and he even came in on Saturday when he was at the hospital doing research to check in on Daniel. He ended his rotation on the EMU that Friday, but he even took the time to check in on Daniel on Monday, even though he was beginning another rotation in another department that day. These connections speak to the wonderful staff at Cleveland Clinic, but they also speak to Daniel’s personality and how people are drawn to his cheerful, sweet and funny self.

Most of you know that Daniel loves music, and I shared before about the music therapist and how thrilled Daniel was that she came to see him with her cart of really great instruments. She was no slouch – she really played those instruments and they were in tune and she could sing. On top of that, when she found out that Daniel liked worship music, Chris Tomlin in particular, she said, “I love Chris Tomlin!” At that point I knew Daniel would be well occupied for a half hour or so and I headed out to the lobby to do some work. When I came back they told me that I had just missed Daniel’s concert! He had called all the staff to his doorway and with the music therapist he sang two worship songs for them – Grace on Top of Grace and another one which I can’t recall. The day I met with Dr. Moosa at length and received disheartening news I had gone out in the waiting room and had a hard cry. When I came back to the room Daniel and the music therapist were just finishing up and Daniel asked me to sing one more song with them. “Mom, sing ‘Need You Now’ by Plumb!” Oh my. I couldn’t get through it without tears and had to explain to Daniel that I was crying because that was how I was feeling right then, but I knew God was using my boy in that moment to get me to acknowledge and even sing out the cry of my heart. Click the title to hear the song on YouTube.

I think I also shared either on FaceBook or in an earlier post that Daniel had organized an ice cream party on the unit. It was really something else! The day before, he had asked Nurse Jen and the personal care aide if they could have an ice cream party and they said that after lunch the next day they could have an ice cream party. So before the designated time Daniel asked Nurse Jen to go around to all the kids in their rooms and ask them