Thursday, August 13, 2015

That Awkward Moment...

...when you need to use the restroom at the hospital where your child is receiving an IV infusion and you knock gently on the unit's bathroom door and even more gently whisper, "Hello?", and when you get no response you are convinced you hear voices so you proceed back to your child's infusion room to wait a bit longer rather than lurk outside the bathroom door like some sort of weird creeper but you really need to pee so you decide that enough times has passed to try again even though only about sixty seconds have passed so you yet again go through the polite bathroom motions of knocking and question-y whispering as though you're getting sworn into some sort of secret society only this time when no one answers you realize it's either embarrass yourself by walking in on someone or embarrass yourself by wetting your pants so you bravely push open the door while trying to sound apologetic yet friendly at the same time as you start to say, "Anyone in here?", only to realize that not only is there no one there, it is a multi-stall bathroom and you could have gone in the first time around without knocking on the door.

...when you realize that the hotel you "karate chopped" your way into by "naming your own price" is, in fact, quite fancy, and you need to tip three different people just to get from your car to your room, and while waiting for the bellman to arrive to take the luggage (which in your case consists of one rolly suitcase and multiple tote bags filled with things like diapers and oxygen bottles along with dog food and an Adidas duffle bag-because we're super fancy like that) from the valet,  you ask him where you might be able to take your dog to the bathroom and when he tells you there is a park right outside across the street you nod knowingly (because your are putting on your very best 'oh yes, I stay at nice hotels allllll the time and thus will act extra sophisticated and self assured), thank him, and then proceed to go in the wrong direction and end up outside on the opposite side of said fancy hotel and when, in desperation, you figure it's Boston so maybe they consider concrete areas to be a "park" you take your dog over to pee only to realize the next morning when the valet takes you to your car on the "right" side of the building that there was a park with grass all along and you had had your dog just let it go in a pretty nice sitting area where dogs are most definitely not welcome to go potty...at least according to the sign I later spied.

...when you finish up with the infusion appointment and triumphantly post a Facebook status about it only to check into your next appointment to find there is still another one right after it and you have no idea with whom or why. In fact, you're not even entirely sure who the appointment you knew you had is with or why but you keep repeating the word 'Physiatrist" almost like a mantra to your confused husband so you can feel superior that at least you know why your child has an appointment while silently throwing up prayers that you are right so you don't have to admit to him that you are, in fact, as clueless as he is.

...when you meet a friendly lady in the hallway on the way to your appointment room and she is super nice and very chatty and tells you her name (which you immediately forget) and you still don't know who she is but she informs you that an emergency has just popped up but she will be right back and will definitely not make you late for your other appointment (that you didn't know you had until then) so you go in and wait for this mystery appointment to take place.

...when the resident comes in and takes down all of your child's history and through vague questions, because God forbid you sound as stupid as you clearly are, you determine that this is the resident for the person you are about to see and you start to feel pretty smug about your detective skills but then the mystery hallway lady comes in and and the resident leaves without really talking to this lady but says she'll be back and you still aren't sure why your child is seeing this hallway lady so you once again ever so cleverly (at least in your own mind) tip toe through a minefield of vague questions to try to figure out what it is exactly that this person does in the hospital you ask if she can help you stay on the Complex Care Services team because in your infinite wisdom and deductive prowess you have determined that they are a nurse who is there to help coordinate care for the upcoming spinal surgery. Then you start gush about how awesome your child's CCS pediatrician is and you just love her and have such a great parent/doctor relationship with but then she interrupts you to say that actually she is your child's developmental pediatrician on the CCS team and the doctor you have been asking to stay in touch with and have been gushing about for the past five minutes moved out of State quite some time ago so you desperately try to back peddle into safer conversational waters and come up with a gem like: "So I guess what I'm trying to say is that we don't want to lose you!", even though you literally just met and could not repeat this person's name back to them if your life depended on it. Also, turns out that this appointment that you had no idea was even happening was a very important once as it is the over-arching, t's crossed and i's dotted PRE-OP appointment for your child's spinal fusion surgery.

...when the last doctor you see for the day actually is the physiatrist, because gosh darn it, you knew that your kid had an appointment with a physiatrist because you are a good mother like that (not so much), and part way through chatting with that doctor, in walks the resident who you thought was the resident for the developmental doctor who you originally that was a nurse and you realize that she was the physiatrist's resident all along so you keep up with the charade that you do in fact have your sh*t together even though it must be abundantly clear to anyone that has spoken with you that afternoon that you don't.

...when you realize that this post is basically a bunch of run-on sentences with very poor grammatical structure and you're just too tired from pretending that you have a clue to even care.

#awksauce #pasttensepresenttensenotense  #Tessisstillalivenothankstoherparents #ihatehashtags


Sunday, August 9, 2015

It takes a village...

...or at least a couple of strong boys willing to help.

Last weekend Charlie finally got to cash in on his Christmas present from Blake and Ellie when they all went away for the weekend to a camp on a lake.

Fishing, games, boat rides, kayaking and all without any of the usual interruptions. Just Charlie, Blake and Ellie for some father/daughter quality time. To steal a line from Martha Stewart, "It's a good thing."

The problem with all of them being gone at the same time is that it leaves just the Toodle Bug and me.

Home. Alone.

And for those who do not know already, I can't lift her myself due to her size and my terrible, horrible, sucky, stupid, fibromyalgia which, as an added bonus on top of the daily chronic pain, causes acute muscle spasms in my back when I over exert myself.

So yeah, knowing that I was all alone with a kid who may need to be lifted out of her wheelchair for something as simple as a diaper change, to something as serious as a seizure, left me feeling rather stressed.

Enter Bobby and Hunter. Literally.

For those who don't know (though most do), Bobby is Blake's boyfriend and Hunter is Ellie's.

Late morning on day one, as I smelled a familiar odor in the air swirling about Tessie, I began to wonder how I was going to get the poor kid into a clean diaper. It seriously stinks (pun intended) to know that she is stuck sitting in something that has to be uncomfortable and can cause other issues (skin breakdown is a real issue for kids who don't move much and add a dirty diaper into the mix and you up the ante considerably on getting problems) all because I couldn't move her myself.

I was starting to feel like the worst mother in the world when, to my ever so happy surprise, in strolled Bobby. He had just gotten in from haul and even before going home to shower, he stopped by to see if Tess needed to be moved. Now that's a good guy.

Bobby got Tess on her bed so I could change her and when she was decent for boys' eyes again, he came back in her room to put her into bed for her afternoon nap. When I told him I thought I would most likely have help getting her back up, he said he would stop by in a couple of hours anyway, just to be sure.

But a couple of hours later, in walked Hunter. Again, just checking to see if Tess needed to be moved. Again, good guy. Plus, yes, she did need to be moved. So Hunter got her back in her wheelchair with plenty of assurances to me that he would be around and to just call if I needed him to come back to put her back in bed for the night (but Bobby had already said he would do that so Hunter got the night off).  Bobby came just after Hunter had left to be sure Tess had gotten out of bed from her nap.

The rest of the weekend went much the same way with the boys either just showing up at the right time or with me sending them an SOS on Facebook to which their immediate response would be, "No problem, I'm coming."

Basically, those two boys kept Tess's life running just as it usually does, just because they knew help would be needed and because they knew I was worried about being home alone with her.

Good. Guys.

Not to mention,  Tess got the thrill of being carried around by her sisters' boyfriends. Trust me when I tell you, she just LOVES when that happens.

I'm just thankful they were willing villagers last weekend.




Bobby cruising Tess around the house 

And Hunter doing the same thing