Saturday, February 23, 2013

Ordinary Mom for a Night

Thursday afternoon I left for a night away with the Princess.

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!
Just as we were finishing, I got a call from the medical director telling me to Stay put. Enjoy. Have a margarita. MC's airway was being managed and if anything changed they would, of course, call me to come back.

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.
No alarms, no middle of the night decisions and a fair amount of uninterrupted sleep.
... at least for the one who chose the middle of the bed as her "side."
Just a regular old ordinary mom for the night.

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).
We're back now and I'm unpacking. It's dawned on me that while the Princess acquired a new out of season wardrobe in sizes that will fit her next year, of the few things that I did select for MC, all would be just perfect for him right this very moment.

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. 




19 comments:

  1. I'm so glad you were able to get away and enjoy a little bit. You are such an amazing woman with a good head over your shoulders. I wish I would live nearby to help you and relieve you of a little of your work. Happy 11 months to all of you!

    ReplyDelete
  2. Glad you were able to recharge a bit. Loved the pics. I have that elephant humidifier too!

    ReplyDelete
  3. Lovely that you had a girl's time out. Must help all of you. Pictures are wonderful and both babies look adorable as always. Princess must be contemplating walking these days. I count the days between your posts and constantly send good wishes and hopes. Thank you for the kind words of understanding about parents who are not able to do what you are doing. Such an amazing year you have been through.
    Tremendous caring....... old ca grandmother

    ReplyDelete
  4. "You have no idea how many kids we see that the parents just don't care." OMG, OMG! I can't believe those EMT's just don't get it, even after everything they've seen! You ARE very unusual, but it doesn't mean that the parents who have nervous breakdowns or get divorced or just get in a car and drive 2000 miles didn't care. There is only so much the human body and mind can take. How do you get your hopes up so many times just to have them dashed? How do you have your heart broken day after day until it is in a million little bloody pieces? I think nobody gets it unless they have been there. Thank you so much, Bernadette, for attempting to explain it to them. They needed to hear that. I am overjoyed that you and Scarlett had that precious day/night of normal life. God bless you all.

    ReplyDelete
  5. I don't know how you've avoided hitting that burnt-out stage a long time ago. I know I'm exhausted, and I haven't dealt with a fraction of what you have (btw, thanks for all your supportive comments lately). Good for you for getting away and enjoying yourself for a night! It sounds so relaxing.

    And I can't believe your babies are so close to a year old already. That will really be something to celebrate.

    ReplyDelete
  6. Always remember to feed your soul. As ever, your family remains firmly in our prayers and good thoughts...

    P.S. We nearly bumped into you...we were in AC on Monday for a quick overnight with friends.

    ReplyDelete
  7. Happy 11 months!!Cant believe that much time has gone by!!Scarlett and Hayden are as adorable as ever!!I am soooo glad that you had a little getaway.You really needed to recharge and rejunivate as well as spend some quality time together.We think of you often and wish the best for you and your family.We admire you all.....HUGS from canada..
    kathy and david

    ReplyDelete
  8. I'm always amazed how you handle every challenges that come to you. You are such an inspiration!

    ReplyDelete
  9. I don't know if I let my breath out until the end of this post, it felt like I had to remind myself to do it. I can only imagine that must be a state you experience often...
    Wishing you beautiful golden in breaths to nurture you through those times.

    ReplyDelete
  10. I don't know you, I'm just a lurker. I think I found you from Mo (Life and Love in the Petri Dish. But I just wanted to say that I think you and your husband are amazing. I'm sending all my good thoughts and wishes your way. MC and The Princess are incredibly lucky to have you and each other.

    ReplyDelete
  11. I'm so glad that you got a few precious hours to just be with your little Princess.

    I had the same thought about those parents that "don't care," bless their hearts. I think that as much exposure as the EMT's have to children in crisis, they probably haven't processed what this actually means for the parents.

    ReplyDelete
  12. So excited you got away for awhile!! You continue to amaze me and I wish we lived closer so that I could help you!! I was so glad to read this post!!! When things settle down...of course, that will probably be years from now..let's talk...got lots to catch up with you about!! Take care!!

    ReplyDelete
  13. Your son is so gorgeous - so had to understand that he is so sick. But boy how lucky he is to be loved soooo much.
    Glad you had a ladies day. ;)
    Thinking about you.

    ReplyDelete
  14. So glad you got a night away- those batteries definitely need recharging, SNandMCK or no. Can't wait to see both MC and the Princess sporting their new fashion bargains!

    ReplyDelete
  15. Poor baby, I hate that he is so sick. I am glad you got a night away, I hope his new diet and vitamins help him soon.

    ReplyDelete
  16. oh bernadette, you are incredible. beyond strong. brave. and BEAUTIFUL. i'm so glad you were able to go away and enjoy yourself...making the most of your time. ac...what a perfect choice! your words made me smile and tear up. your babies are so very blessed. and what a perfect outfit for your superhero. :) so much love xoxox
    maria

    ReplyDelete
  17. Bravo.
    Sounds like just what the doctor ordered.
    Happy birthday little ones!

    ReplyDelete
  18. I work for a hospital with a lot of patients who "don't care." Sometimes it is frustrating to see how little our patients care about their own health or their child's health. Thanks for the reminder that we don't always know what they are going through when they leave here. Wise words. And also, the Dr. Love onesie is priceless. I'm going to have to search for one for my kids. I love 'em!

    ReplyDelete