Sunday, April 19, 2009


When I entered Eli's room this evening, he was asleep. All his monitors assured me, he was very asleep. He always looks so peaceful when he sleeps. Tonight, the only pieces of technology he has attached to him are the little round stickers on his chest, and the tiny feeding tube in his nostril. His hands and feet are free to move, and they're showing few visual reminders of so many different tubes and wires he's had hooked to him for the last two months.

I sit and listen to him breathe. He has such a short breath, but he always does. You can see each breath as his little abdomen sucks in under the ribs. He's so small, you can actually see his chest bump with each heart beat, if he's still enough. The dosing unit for his milk feeds beeps, warning that it will be empty soon. The nurse heads off to prepare another dose. He's getting the good stuff now, boosted with even more calories than before, to help put some weight on our little boy.

He begins to wake up and starts looking around the room. I wonder what it feels like to look at a hospital ceiling and not know this isn't normal. This is the only place he's ever slept. It's been there every time he's ever woken up, his entire life. After a few moments, I pick him up and hold him in my arms. He continues to look around the room, and at me. He doesn't fuss, at all. For a change of pace, I put his chest against me with his head on my shoulder. He struggles a bit. This isn't an orientation with which he's familiar. But he doesn't argue. His monitors don't like this orientation, and they begin with protests of "No Signal." I can see he's absolutely fine, so I silence the alarms and talk to Eli.

As I cradle him in my arms, on his back again, he begins to communicate a little annoyance with me. He doesn't like something, but I can't tell what it is. I change his position, and he's quiet for a while. Tonight, he doesn't have a shirt on, but I'm completely gowned up and am wearing gloves. I've decided I want to touch him, with my own skin. I take off the gloves, sanitize generously, and hold him again, with my bare hands against his bare neck, back and feet. This is my little boy, and it feels nice to hold him human body to human body. I remember the first time I could touch his skin with anything more than a single finger. It was on his back, just like this, a couple weeks after his surgery. I placed my entire open hand across his exposed back and felt his warmth. But it's different tonight. Emotionally, he's graduated beyond a medical miracle to being my son. I desperately look forward to bringing him home and showing him the world. I can still feel a little raspiness in his lungs, as he fights his cold.

I have two very specific goals, based more around my own desires than anything else, but important to me nonetheless. I want to go to a Cubs game in Wrigley Field with Eli. The red billboard out front with scrolling marquee, the brick and the ivy, the 7th inning stretch (even though Harry Carey has long since passed), and the bleachers on top of the apartment buildings beyond left field. To me, this is what baseball is all about, and I absolutely love it. I also want to see the top of Half Dome with Eli. I've never seen it before. I've gotten close. I was in bad shape ten years ago when we tried, and even worse now. Who knows what a train wreck of fitness I'll be in another ten years. But if Eli's heart is capable of making it up there, we will make it to the top.

As the evening progresses, he's becoming more and more agitated. I don't seem to be able to calm him. We change his diaper and try wrapping him in his blankets a little better. Then it becomes obvious... he wants his pacifier or a bottle. He can't have a bottle right now because of his cold, they're feeding him directly into the intestines. I wonder if he has hunger feelings, since his stomach has had literally nothing in it for many days. His body is well fed, but what about his stomach, and the feelings it produces?

He's really worked up a nice, strong cry by this point. The nurse is off to locate a new pacifier, his seems to be missing. I rub his eyebrows while I talk to him. Paige always loved this, and so does Eli. His eyebrows are red like his hair, and a little wild out at the the ends. Tanya and I have laughed that they look like old man eyebrows. The nurse returns with a new pacifier and I offer it to Eli. He immediately takes it and is silent. The nurse gives him his medicines and vitamins, takes all his vitals, all with his complete cooperation.

He's been awake for the last hour, and is starting to fade off into sleep again. As the pacifier movement decreases, so do all the numbers on the monitors. He's fallen back to sleep, looking just as he did when I arrived earlier this evening. I say my goodbyes, wind up his mobile, and head home with the sound of "Lullaby" getting quieter as I head through the halls.


Bonnie said...

Thank you, Jason, for such an intimate view of your time with Little Man. I have tears in my eyes as I think of the dreams of a father with his son.

May God choose to be glorified through these dreams and grace you with many years together.

We love you all very much!

Mom said...

I am so very fortunate to touch his soft forehead and rub his 'old man' eyebrows and gently put him to sleep. Your soft words allow so many to sense Eli's beauty while they can not touch and see his beauty. God bless YOU for allowing so many to know Eli.

Happy 2 month birthday Eli, can't wait to see you AT HOME...Love ya, Nanna

Tamara B said...

What a sweet and precious perspective. Thanks for sharing!

Anonymous said...

That was so beautiful and poignant, brother. I'm not surprised, but so touched by this. I love you all.


Amy said...

My heart aches with sorrow and joy as I read this post. Sorrow for the frustration and pain you all and Eli endure daily. Joy for the hope and dreams you shared. Thank you for your words and for sharing about such a precious time with Eli. Love you all and diligently praying for healing.