The hospital room. (by Garlia Cornelia Jones-Ly)

The monotonous beep coming from the infusion pump had become an all too familiar sound. My medical vocabulary was now good and I knew which veins were the best on my baby boy.

I was immune to his cry and then silence that came with each pinch of a needle. He had learned to brave those needle sticks without knowing why.

Above the electronic pump, a bag of blood slowly infused into my baby. The 3-legged stand with its heavy beep became part of my life last summer with my newborn, who was otherwise healthy and growing beautifully, which I learned to include as a clarification for people who may not be familiar with his disorder.

Doctors and nurses commented on how great I was doing, but I knew no other way. Somewhere deep inside I wanted to melt, to fall apart, to have a tantrum like my toddler daughter might.

I knew enough to just hold on because if I fell, who would comfort me? I was the mother – it was not about me, it was about how my baby was going to get through this.

It all started days after his birth, our birth, on a sidewalk. After routine tests, the first pediatrician said jaundice.

Was it the sidewalk birth that did this? I wondered. Did he pick up something strange? Was I so irresponsible that I couldn’t even manage to have my second child in a proper institution? Had our life gotten that out of control?

But it was none of that. It was most likely a rare and genetic blood disorder, we would learn in the days to follow.

I had longed for this time to be different. I knew the things I would do this time around with my son: less iPad, iPhone and more reading, more writing. I had dreamed of a summer by the beach with my husband and myself, the baby and  our then 2 ½ year old daughter. A summer to remember.

None of that for us.

I was tired. I never had the relaxing time post-baby with my first and it was now evident that I definitely wasn’t going to get it with my second. I wanted a break, I wanted to sleep and forget about the world.

As we embarked on the unknown June we were about to face, I stared at my swollen ankles on my birthday. My baby boy was three days old, in the ICU and I wasn’t with him. The only things I wanted were to hold him, nurse him, and watch him sleep. The hospital became our second home in June and I felt like I was never home for our daughter, like she was slipping away from me and everything was a mess.

The excitement that followed the Sidewalk Birth was still there, but how do we tell people about what happened next?

While my husband was one to keep to himself and wait until the right moment, I often had the opposite reaction: tell everyone everything. It was a release. It was what I needed to get through each day and often still is.

By August, things had gotten better. I gained some perspective, as happens at the hospital when you meet parents and children in worse situations. During one transfusion stay, we shared a room with a 14-month-old who was only 12 pounds. He wasn’t walking and wore the same size diapers as my then 8-week-old. He had multiple open-heart surgeries and his mother couldn’t be there round the clock with him because she worked.

In moments like those I was grateful for my ability to be there at every step of this journey. The doctors and nurses all knew me by name. Had I a full-time job, I could have been driving in from another part of the city, my baby alone in a pediatric ward before, during and after his transfusions.

Over time, my son’s medical situation has become more than manageable, but the emotional exhaustion still sits with me. There is a numbness to my emotions now. A blank stare I cannot shake. My feelings are there, buried deep beneath my surface, but as they are rarely tended to, how am I to let them escape?

With the transfusions maybe out of the way and my baby boy toddling full steam ahead, now I deal with the task of gently untethering my heart from the lines attached to my son and letting it attach itself to our new life.

Garlia Cornelia Jones-Ly is a mother of two and gave birth to her youngest on the sidewalk in front of her apartment building.  She is also a freelance writer, playwright and Obie Award winning Theatre Producer living in Harlem.   Follow her on twitter @garliacornelia.

Like On Parenting on Facebook for more essays, advice and news. You can sign up here for our newsletter. You can find us at washingtonpost.com/onparenting.

You might also be interested in:

What our time in the NICU taught me about being a mother

Finding the right help at the right time

No hoodies for my son