It’s “Public Sleeping Day”

I used to be able to sleep anywhere. I could sleep on a hardwood floor, in the middle of the woods without a tent, or even with my feet stapled to the ceiling. I considered it to be one of my special skills.

In recent years, however, I’ve lost my ability to catch Zzzz’s just anywhere. It could be that I’m a “hardened” adult now – becoming used to sleeping on a quality mattress – or it could be that my aging body just can’t take the obscurity of sleeping wherever it happens to land. It really is too bad though, because I’m still required to do it.

When Ben was first diagnosed with neuroblastoma, I was eight months pregnant with Madeline. I was very uncomfortable. Swollen ankles, itchy skin, broken heart… and having to sleep in the hospital, either on the “plastic coated” couch or the “sometimes reclining” chair, well, it was less than comfortable. As you might imagine, good, solid sleep was a very sporadic luxury.

Ben’s initial stay at Children’s Hospital was three weeks long. Between all the procedures and surgeries and scans – and then the initial round of high dose chemo – I can’t say that it was particularly restful. I’d drift off to sleep only to be awakened by an orderly sent to get my son for some random scan or procedure. And then, when it was nighttime and the floor was quiet, I’d try to sleep only to jolt up off the couch, wracked with worry and overwhelming fear that my son was going to die. I’d stuff my fat feet into the only shoes that would fit – my slippers – and take to roaming the halls, passing room after room of children who were sick. Children who were dying. Families that were huddled together. Families that were falling apart. And here I was with my very own sick child with a new baby coming in about a month. How would an infant fit into this new world we were living in? How COULD I bring an infant into this environment? How would this all work?

Someone even said to me “This new baby will be such a blessing. You know, in case, …” I turned and walked away before they could finish the sentence “in case Ben dies.” So NOT comforting.

The first time that Ben was discharged from the hospital we went to stay at my parent’s cottage in German Village. It was just moments away from the hospital as opposed to our house that about 25 minutes away. We wanted to be as close as possible because even though we were technically out of the hospital, we would have to go to clinic just about every day for follow-ups and blood transfusions and all that fun stuff. Anyway, I was looking forward to sleeping in an actual bed. I pulled my exhausted body into bed. Ben was snuggled in between me and Matt and already asleep. I leaned over to smooch his sweet forehead and started to panic when my lips came in contact with his feverish skin. As I was praying that having hot lips was some odd side effect of a stressed out pregnant woman, I searched for the thermometer and placed it in Ben’s underarm. Crap. Fever. Get out of bed, Matt. We gotta go back to the hospital.

We sat in an ER triage room for a bit as they were getting a room ready for us. Unfortunately, the room we had left only hours earlier that day was not available. As I was holding my sweaty Ben on my shrinking lap, I stroked his feverish head. And that’s when his hair started to fall out in my hands.

We finally got to a room on the oncology floor in the wee hours of the morning. I laid down on the plastic-coated couch to try to get some rest. Must sleep. Eyes heavy. Breathing beginning to regulate. Then BEEEEP. Machines going off to alert staff that Ben’s medicine had run its course. Then came the onslaught of staff milling about the room attending to Ben. Ugh. Back to the grind.

Ben’s chemo schedule dictated that I pick a day to go to the hospital to deliver Madeline. I chose April 3. I went in to the hospital at 8 AM, started the drip to induce labor at 9 AM, had my water manually broken at 10 AM, and had a beautiful baby girl in my arms by 1:18 PM. She was truly beautiful. She was fairly quiet and seemed to want to sleep a lot. Hallelujah!  Matt left Riverside Hospital to go back to Ben. Madeline went to the nursery. I crashed for the first stretch of blissful sleep that I’d had in weeks. The nurse only interrupted me when it was time to feed Madeline.

We left the hospital less than 24 hours later. I like to joke that I didn’t get the full benefit of my maternity stay and it was clear that I was going to be gypped out of my postpartum depression, too. In fact, whenever I have a really bad day, I just say it’s the latent side effects of my postpartum depression.

But with Ben’s treatment schedule AND a new infant, it was clear that sleep would be low on the list of priorities. Madeline was less than a week old when Ben had to be readmitted to the hospital for his next round of therapy. Matt slept in the “sometimes reclining” chair. I slept on the “plastic-coated” couch with Madeline wedged in between me and the wall. A perfect scenario? No. But we had to make due with what we had to work with. And we made it work fairly well.

Ben and I are going to New York in two days. The first few nights we will have the comfort of the Ronald McDonald House. The rest of our stay will most likely be in a shared surgical recovery room at MSKCC. Or, possibly, the  intensive care unit at Cornell University. I’m sure it will not be luxurious accommodations – especially if we have to SHARE a recovery room – but we’ll make it work.

But if our roommates happen to snore, well, I guess I won’t have any trouble finding earplugs at 3 AM in New York City. I’m just hoping that the catch-phrase of NYC being the city that never sleeps doesn’t have to apply to me, too.

I’m going to take a nap. 🙂

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