We met a dear friend in Atlantic City, NJ (strategically planned easily accessible location for the both of us with cheap hotel rates, great food and fantastic outlet shopping). Most importantly, it's slightly over 2 hours from MC's house, meaning I could get back in a hurry if needed.
I was well aware that it might be needed.
MC is sick. Very sick.
We discharged him from the PICU last Friday so that he could be more comfortable in his home, and I've watched him struggle ever since.
On the ambulance ride back to his Home, the EMT said something to me that I hear almost every single ride after I translate all of MC's MCisms, the specifics on how to safely transport him, what rescue measures to take if he declines mid-transport, etc., etc., etc... It goes something like this:
Wow, your son is so lucky to have you. You have no idea how many kids we see that the parents just don't care.
So I do think that MC is lucky to have me. Just as I think that I am lucky to have him. And I say so.
But what I also say is this. I say that parenting a child like MC is hard. Extraordinarily hard. Overwhelming, exhausting, and financially, emotionally and physically draining.
I say that I have doubts about how many of those parents actually "don't care." Perhaps they weren't able to show up for discharge because they couldn't afford to leave their job. Because they couldn't find care for their other children who were not allowed on the hospital floor. Because they just could not face the devastating reality of their child's disease.
Or perhaps they did show up at the hospital. Every second of every minute of every day they were at that hospital. And they learned how to take care of that child. How to administer all of that child's medicine, how to operate all that child's equipment, how to do everything for that child. And they never slept. And they forgot to eat. And they never saw their other children. Because they never ever left. And while they may have been present for discharge, it appeared that they did not care because they had become so overwhelmed from doing everything for that child that they could no longer face the devastating reality of their child's disease.
MC was admitted to the PICU twice this past month. He's on a special diet, has an arsenal of meds and needs to be positioned just so in order to keep his airway open. He needs constant suctioning and 24 hour care. He does not follow the rules. Administer treatments that would make a typical child better and you will make him worse. Scary worse.
As his mom, I have no choice but to be his 24/7 nurse when he is away from caregivers who aren't familiar with all of his quirks. This point was driven home when I left for a mere few hours and came back to find him being bagged. In fact, he only needed to be repositioned, but unless you know him, like really really know him, such quirks are practically impossible to explain. Particularly to a new group of people every 12 hours.
When he returned to his Home, I recognized that I could not go one.more.night without sleep. In a real bed. That I desperately needed some one on one Princess time. That as sick as MC was, I just needed to get away.
This point was driven home when I realized that I didn't need to organize a suitcase... because I'm already living out of one, that I was pulling Indian Rupees out of my wallet at tolls... because I'd never really unpacked from India, that all of the Princess' travel gear was already residing in my trunk... because the girl is in constant transport from one location to another.
|See if you can spot the Princess.|
Snacks stocked (of course) the Princess jabbered away as we drove, filling me in on all the latest RHOBH gossip as I had been without Bravo for a good while. I think the drive alone would have been enough of an escape.
And it almost had to be. I had avoided calling to check on MC during the trip up, as I knew it wasn't a question of whether it would be a bad report. More a question of how bad it would be.
I couldn't help myself once we go into the check-in line. I called. When I asked for his nurse and the medical director got on the line, I knew the answer to my question. Since it was 4:00 p.m. on a Thursday, there would be no point in turning around until 6:00 p.m. once rush hour traffic subsided, so we decided to connect again in another two hours.
The room was already paid for, so we figured we might as well have a break and get something to eat.
Regardless of how long we were going to get to stay, we were All determined to have FUN.
|Ice cream for dinner!|
And while a second coke was more conducive than a margarita to my mental state after this extraordinary month, we continued the night, having a blast bargain hunting at the outlets and snuggling with the Princess.
|Captivated by her amazing clearance finds! Just like her mama, this girl loves a great deal.|
|... at least for the one who chose the middle of the bed as her "side."|
The morning came and we packed up rather quickly, as MC's patience had finally run out. It was time to return.
|Delaying just a few minutes longer with a delicious cup of coffee (and puffs, of course).|
While I knew that I needed this night away to recover from the past 11 months, I think that secretly I knew that I needed it even more so to be the mom I want to be during the next 11... regardless of what may lie ahead.
Happy 11 month birthday to One Princess and a Superhero.