Prepare yourself. I’m straying from my usual format. This week is a tough week. It’s a week that is absolutely draining — emotionally, spiritually, and physically. It’s our regular pilgrimage to see doctors. But this isn’t quite a regular visit. In addition to our normal visit to see the doctors at Hopkins, we have four days full at the National Institute of Health.
I am so grateful we can be a part of the cutting edge of research for a disorder that affects my family and to receive information, attention, and care from the world’s best. But each time the appointments draw near, there is a whirlwind of emotions that they bring with them.
And this day has been quite the kickoff. If ever there was a day full of more irritations, pissy stressful incidents, and just the equivalent of dog shit on your shoe, I have yet to see it. So forgive me while I whine a bit. I have to unload on you, the vast unknown cyberspace world, because my poor family has met their limits. Each of us is wallowing in our own self-pity and loathing. If every day is like this one over the next week, somebody might not make it out alive. Bless our hearts.
Let me share it with you, but I warn …..it’s so ridiculous, it’s comical. This morning we had to be at the airport so early. Since the airport is nearly two hours from our house, we traveled last night and spent the evening at a hotel. (Thank you, loyalty points program.) We got up and left the hotel by 5:30 am for our flight ….. therefore, our brains have lost cells from inadequate sleep. And since my brain isn’t working properly…..I apparently left my fast-acting asthma inhaler in the hotel room. Eh….breathing, who needs it?
Then, in what may be a record, my son had his phone taken before 6 am. Anxiety is running high for everyone and that sets the stage for some showdowns.
I feel so guilty. Everything about this is beyond his control. Having Loeys-Dietz Syndrome, spending a week shuffling from doctor to doctor, having to be here or there at a certain time, getting pricked and prodded, being away from home. I know why his anxiety his high. I know why he is in a terrible mood. I know why he is full of “attitude”. And while I can be patient, I have to continue to be Mom. And, of course, my own fuse is short with anxieties and lack of sleep.
As if that wasn’t enough…..our plane was slightly delayed due to a “mechanical delay” which the pilot assured us was simply a matter of paperwork. Such an announcement is not helpful for already frazzled nerves.
When our plane arrived, we had to sit around and wait for two hours until the NIH shuttle arrived. It has a set schedule. However, the silver lining is it allowed us time to sit, grab a drink, watch planes arrive and depart, and breathe.
We are staying at the Children’s Inn of the NIH. Upon arrival, we received a tour of the impressive facility and completed paperwork. At this point, we were famished. Ordering food to be delivered here was interesting and full of failures. Finally, we were fed and ready to head to admissions at NIH to take care of the paperwork. I needed to get my purse, but …… uh oh….. locked myself out of the room.
With key cards in the room and us outside of it, I had to go to the front desk explaining that I was absentminded and locked myself out. Without so much as a single snide comment, they walked us back to the room and unlocked our door.
Then, seriously, within 20 minutes Rick realized he could not find his license. And there began the total freak out. We weren’t sure if we could go through the admissions process without the license. We knew flying home would be a huge problem. We retraced steps to no avail. We went on to the hospital and completed admissions without a license, thankfully. The we returned to the inn and retraced steps once, twice, three times without success.
Now is a great time to say I don’t know all the research going on at the NIH, but I’m pretty sure that there are some surgeries going on that remove sarcastic tendencies because the staff here — despite us having locked out ourselves, not having a clue how to get to admissions, not being able to locate our remote control (I totally am skipping that story), and losing a license — never once even rolled their eyes. Come on, people…..that’s totally the stuff of science fiction.
After tearing apart our room again, Eddie and I decided to go back and retrace our steps. In a bizarre thought, Eddie decided to look into the refrigerator. He was taking that whole retracing thing literally knowing that we had all put our leftovers in there earlier. Lo and behold……there sat the ID.
So now I’m in the room watching one of my favorite shows, Once Upon a Time, with my chest mildly hurting from stress, asthma, and no inhaler but in the process of unwinding. And I’m getting ready to walk outside with Eddie to look at the blood moon and salvage what is left of this day finding something good in it.