Today marks one month since I slept in my own bed…

And I also
Haven’t cooked a meal.
Haven’t done mountains of laundry daily.
Haven’t spent an entire day cleaning to have the house look the same as when I started.
Haven’t gone grocery shopping with four kids.
Haven’t curled up on the couch with my boys.
Haven’t adventured anywhere for a day of fun.

I miss our life…but since our baby’s life depends on the team here, I am ok with the longing…

Our days in Boston have passed to weeks. And now months. But the division between them is indistinguishable.

They are all the same except for those terrifying acute moments.

Or when we have company.

Days and nights blur into one.

Every.
Day.
Is.
The.
Same.

Marshall’s smiles and giggles and development and existence make it worth it.

But damn this is the hardest experience ever.

There’s no beginning or end of the cycle of “living” here. Our little man is attached to Totem (as I have named his I.V. pole.. a deserving name since the thing is sustaining my kid’s life and accompanies him everywhere.) We spend morning, noon, and night in a hospital room attached to equipment (formerly oxygen, now IVs and heart monitors.) If we are lucky, we get the luxury of the window side of the room. If not, we share with another crying, very sick baby. Oh and sometimes we escape to the garden.

The traffic in Boston Children’s is the same as the traffic in its city. Nurses, doctors, & staff are forever in and out – at least hourly. Assistant nurses check vitals – sometimes as much as hourly but no more than every four hours.

Morning begins with Marshall screaming as he gets a round of powerful meds. Then his anticoagulant shot. Sometimes I can easily settle him back down after the nurses try in futility.

Then he sleeps.

Then they pump him full of more oral meds (he already puts up a HECK of a fight…how are we going to do this when he is two??!)

Mid morning is best with him. He plays and laughs and makes all the ladies swoon. But that is also when rounds happen. So I often miss those precious few moments with Happy Marshall to remain informed of the team’s plans.

Then normal baby stuff (feedings, diaper changes, etc). Sometimes I sneak breakfast and a shower. So then I miss more of his good time.

Michael is usually here for those moments I am not. It is not that the staff isn’t competent. It is the fact that Marshall is ABSOLUTELY SCARED of everyone who touches him now so we can not leave him alone in this place.

Then Marshall usually sleeps. But generally only in my arms because he has been through so much.

Then one of us gets lunch. In shifts but not together. I will leave the details of the food served by this cafeteria for the book. Free food for me (because I am nursing and generally accidentally flash one or more members of the parade of folks stopping in for us or our roommate) is a great bonus…but there is a story I will never forget about that place too.

Needless, mid morning to 4 p.m. is filled with trying to keep Marshall fed, clean, entertained, reassured, and as comfortable as we can.

All of these things in front of handfuls of random strangers.

Nothing like talking to Harvard’s best while your baby screams his head off. Or during those preferred private moments when I am feeding him. (Michael is always good for swooping in during that situation. Thank. Goodness.)

We spend 50% of our time consoling Marshall after a “big morning” or ” big day” following those scary acute (deargodpleasemakethemneverhappenagain) moments. Or the horrors of bloodwork (they stab him endlessly with a success rate of <40%). Or the terrors of NPO followed by diagnostics and studies. Or the discomfort of the normal baby stuff (teething, growing pains, gas, belly aches).

Then before we know it, another day is drawing to its end. We are often surprised when it is dinner, bath time, and fussy time. How did the day go by with so little accomplished?

This is when I get to chat with my big wild boys. Outside of Marshall's smiles, this is one of the best parts of being here. But that is usually brief because of circumstances beyond my control.

Night time is not easy. Marshall has massive meds in the afternoon which make him just scream. We do our best to soothe and distract until he settles down. Our success rate at times is as good as their stick rate.

Then he gets more meds. And the scream-console-distract process begins again but to a lesser extent since he just doesn't have the energy at the end of the day.

Then he sleeps. I try to remember to update family, friends, & this blog. Somehow stringing words to rambling sentences helps.

Some days I just can't write. It's those days Marshall needs good thoughts the most…

I usually try to get some sleep at a point when Marshall is just waking up. So then I settle him and try again. But that sleep is fragmented by nurses entering and exiting all night, heart monitoring alarms, more meds, night time feedings (whatever helps him grow), procedure consults, and those rare but incredible middle of the night conversations.

Then it starts all over.

I find solace in the fact that Marshall is still here in arms reach or in my arms. Most babies with his condition don't make it this far. So that alone erases some of the not so great aspects of this.

That said, the sounds of this place will haunt me as long as I live. I don't even know if I will be able to address them when I write Marshall's book.

It seems the things we hear the best are the ones we are trying not to listen to.