You know, most wars start with a disagreement. Sometimes it is a misunderstanding; sometimes it comes from an exertion of power that not everyone is okay with. Some go to war out of self-defense or in support of others who can’t fight for themselves. When the hand that feeds you also has a strangle hold on your neck, it’s time to bite.
As the hiatus in posts and a few Facebook posts have alluded to, things have been a bit wild this month. The home we were supposed to rent fell through at the last minute, so we were left with a single day to search and find a home before visiting family across the country. 28 hours, 3 stops at the bank, 4 diaper pit stops and a dead armadillo later, we returned to a house filled with boxes and prepared to move the next day. Why? “Because you’re young and can handle it.”
Wrong. It’s because we are crazy and had no choice.
Unfortunately, leaving the state for 2 weeks meant a few missed appointments for Secondborn. The only change to make one up for Occupational Therapy was Friday morning. As my amazing hubby rented a truck and moved half of our belongings onto the truck and transported them alone, I drove both kids to post and dropped a very confused Firstborn at daycare with time to spare. With my extra 10 minutes before the appointment (Pause for angels singing the Hallelujah Chorus) I decided to set up the 9 month appointment for Secondborn. Here’s where it gets fun.
To make an appointment, one must call the appointment line. Except for the Pediatric Clinic. You can’t reach a live person or make an appointment by phone for that ONE clinic. Instead, one must physically come in and make it. That means hauling two kids into seats, bringing a double stroller, etc…. so you can see this seemed perfect. The waiting room was less crowded than usual and I was able to speak to the girl behind the desk quickly. After the few basic questions she said, “Oh, he’s been reassigned to Presley in Family Medicine. It’s right across the hall.” She pointed through glass doors. I looked and the common sense portion of my brain exploded a little.
Now, I knew the PEDS clinic wasn’t taking anyone new, but silly me- I thought the letter that said he would continue to be assigned to PEDS meant he’d be assigned to PEDS. Instead, all the pediatricians are being reassigned to various clinics and military families must be reassigned elsewhere or off-post. I turned to this sweet second lieutenant and realized she couldn’t do anything to help me. I smiled and pushed the stroller across the hall and waited behind a longer line. When I approached the desk, I asked for an appointment for my newly reassigned son.
“I’m sorry, we don’t make appointments in person. You have to call the appointment line.”Okay. Across the hall you have to physically come in but here you have to call. Makes perfect sense.
Sadly, I didn’t have time to call from outside the clinic doors. I had to push Secondborn to the elevators to be on time. After the appointment I strolled over to the Referral Office to track down the information of the endocrinologist that I never received the usual Tricare letter for. There was no line. Only one woman was working, but she was pleasant and effective. I looked around and declared that it was nice and quiet. She looked at me like I’d been living under a rock. Close…I’d left this fun behind in pursuit of Whataburger, Aggies and the comforts of Texas.
“It’s Friday. It’s Sequestration day.” Yeah… could we just pretend the last 20 seconds didn’t just happen? In that moment I totally blanked out. On Fridays, contracted workers and civilians are just not present. Furthermore, it was a training holiday, so only a few soldiers were present. After making that realization, I was just thankful to have been seen at all.
After the appointment I rushed back to my house to continue helping my beloved move our lives into a van (thanks to an amazing friend who wrangled my boys). We worked like Spartans all weekend, and help showed up in masses. It was a great show of support and we are grateful. However, it took a few days to unearth the sanity to call the appointment line.
Finally, I made the call and got a live person who said, “ I can’t make an appointment for you that far out yet. Ma’am, did you know that the new provider is at the Clark Clinic?” Why no, I didn’t. I would have gone to the hospital and missed the appointment entirely. Thank you, PFC. You really saved my day… although I’m not sure which one yet. I’ll call back in a few days.
So now, I fight. Time to go to the mattresses.
Sometimes the best thing to do for kids with special needs is to recognize their special needs and get what they dad-gum need! In the matters of health care, treating them the same is not always helpful. My baby’s thyroid, liver functions, growth, and mental acuity are all needing to be monitored on a different scale. Thus, Secondborn’s check-ups are more intensive than a typical baby’s due to his above average chromosomes. Each trip also includes 45-60 minutes of blood draws for tests as well. Often, we need the doctor to call and confer with specialists at UNC. This is an all-day thing. I can’t take the 2 year old.
As I’m often told, “Things are going to be much more challenging.”
Yesterday I called the patient advocate/case manager that is helping me with Secondborn’s care. She informed me that the new caregiver we are assigned to is a nurse practitioner and is separate from the clinic where the rest of the family receives care. No one has any idea if she has done pediatric work at all, let alone with special needs. God love the NPs and PAs, but I really need to see someone with expertise in CHILDREN, let alone Downs Syndrome. I’m sure she has very white teeth, a lovely singing voice and never cheats at poker, but I need to NOT be the person with the most information or experience with Trisomy 21 in the room. My son and I only have about 9 months under our belts; we are still rookies. Thus, I called to request that Secondborn be assigned to my Family Medicine Clinic to the pediatric doctor who has been reassigned there. There is no telling when that will go into effect.
So here I sit, venting, gathering resolve, and girding the proverbial loins. There is a way, and I will find it, like every other mom who is trying her best to give her kid the opportunities and care possible. It’s hard to navigate health care. It’s hard to figure out parenting. When the two mix, it’s even harder. Please remember that the next time you see a group of mothers that look like this in a waiting room:
Fellow fighters, battle on. We’re in this together. However, if you see me in a kilt in a waiting room in the near future, please help me find some jeans and get me a Diet Coke. I’ll thank you later.