By popular request, I have decided to finally write about a certain unfortunate incident that occurred last week. Honestly, I think I am still too close to the situation to write a full back-story or explanation, Lucky you. Furthermore, the medical information and requirements of my family shouldn’t be plastered online in detailed form.
Nearly every week I am asked why I have so many appointments or why I am never home. If that interests you, the explanation is below. If not, scroll down to the sentence in bold. My feelings won’t be hurt. Really.
The back story is that I have two children who have had need of extra care. Secondborn’s Trisomy 21 threw me into a whirlwind of mental upheaval- I had to become a crash-course expert on potential feeding issues, muscle tone, physical therapy, occupational therapy, new growth charts, and tactfully dealing with questions that have NO business being asked. In the military healthcare system beneficiaries must make an appointment to get a referral to see specialists. If I need my son’s thyroid levels checked I must make an appointment with his pediatrician who has 1500 patients rather than the 900 cap. Then have blood labs drawn out of Secondborn’s head. This has taken a minimum of 45 minutes each time. Then that doctor refers us to a specialist. After 48 hours I can call to activate the referral. Then the new clinic and I play phone tag until I can get an appointment. Once that is done, we do follow-ups and then go through a billing process to make sure it is covered. This represents an average of 8 hours, which also includes finding and paying for childcare.
Since January I have had 67 scheduled appointments, not including lab draws and pharmacy waits. Including drive time, childcare drop offs, wait times, appointment times, each one averages 3-4 hours. Friends, that is more hours than most universities require for a degree.
One of the hospital security guards knows me; he thinks I do laps with my stroller like 70 year old ladies do laps in the mall while holding weights or cans of green beans. Not yet, Sir. Not yet.
With that history in mind, I now had an appointment for Firstborn with the head of the child development. This was my 4th of the week. It was a hard appointment to get, but necessary to evaluate whether Firstborn needs some extra help with his speech to overcome the upheaval we’ve gone through this year.
We dropped the baby off with a gracious friend and arrived 5 minutes early. 40 minutes after our appointment time we were finally seen. 2 year old and I spent 45 minutes playing and quietly stacking blocks.
Sweet single people and mothers of compliant children, this is like storming Normandy. Furthermore, he COUNTED blocks out loud. My kid that doesn’t want to talk, happily counted.This is a feat. When the doctor came out and snatched away the toys, it wasn’t so fun. Over the next 10 minutes of questioning he acted like a little boy. He played noisily. He tossed a ball. He climbed to retrieve the ball. He squealed. He tried to touch everything shiny. He fought the stethoscope. He didn’t want his knees hit with a hammer. It wasn’t the best.
I calmed him down and gave him a new toy. He played quietly for 15 minutes. I pointed this out, which was met with comments that he can certainly learn when he is calm. That is when the words “medication”, “calm him down so he can learn and interact” came up. The long of the short of it is I do not feel comfortable lowering the blood pressure of my 2 year old so that he won’t throw tantrums. What he needed was a lunch, a nap, and some time away from a hospital. Again, she is a VERY good doctor and was very pleasant. I like her. Really. I just don’t think 30 minutes of a toddler tantrum creates the most informed opinion.
The rest went a bit like this. “Audiology can see you at 2:30. Just go down to labs for the blood draw, grab lunch at the cafeteria, relax a bit and come back up for the appointment. “
“Ma’am, I have a baby that needs to be fed. I can’t just stay here for another 4 hours.”
“You can’t get the baby and come back?”
“No. By then I will need to feed them and we will miss naps. It HAS to be another day.
“Oh, okay. Just cancel on the way out. By the way, you’re doing great. Your hair is done, you are dressed nicely, and you obviously care for your kids well.”
“Thanks. If I came in here in pajamas looking exhausted, you’d worry about my ability to care for the kids. Composed people are treated better.”
“You know, that’s true.”
Of course it’s true. That is why I want doctors to look at me and see this:
Not this, which is how I looked that morning after a sleepless night:
(Yeah, I just put that on the internet. I am learning a lot about humility this year. I’ve been told how old and sick I look. Send concealer. Enjoy this dose of reality. )
Just to see if labs could be done quickly while most patients bolt to lunch, I went down 5 floors to Pediactric Labs. I ran into a great friend who walked with me the rest of the way. Her presence allowed me to keep control.
I checked in and THEN was told that the lab tech was alone and behind. There was no telling how long it would take. At this point Firstborn has escaped the stroller and is eating another young mother’s muffin. Worse, her baby is 3 weeks old, so she doesn’t know that this is normal 2 year old behavior in the middle of such a FEMA worthy disaster. I buckled him in, debated a wait, and then announced, “I’m sorry, but I can NOT wait.” Firstborn started sobbing. I received the ‘deer in the headlights look.’ “I’ve been here since 8:30. He hasn’t eaten or napped. I am not physically capable of laying on him to make him still enough for this. We are going.”
The waiting room looked at me like this:
The clerk was startled. I’ve seen her a LOT and always remained cheerful and peppy. This was not pep. Not rude, but not pep. “Ma’am, you are signed in… doesn’t he need the labs?”
“Then sign us out. We’ll see you another day.”
That’s when I unlocked the stroller’s brake and realized the toys from the 5th floor were in the stroller basket. Crap. Crappity crap. Sob. (Not mine. The kid’s.) I headed upstairs, determined to have the appointment cancelled promptly so I could get the heck out of Dodge City.
I reached the reception desk to see one of the worst employees in the history of Tricare was sitting lazily at the desk on the phone. He doesn’t know the doctors that work there (and have for 5 months) and has never been all that helpful. There was a line of several people gathered. I rolled the stroller past, put the toys down, and tried to calm my kiddo who was crying the sniffle-choke-gasp of a middle school girl at Winter Formal. After standing in line for 5 minutes and gathering genuine sympathy from all around us, I finally said that I would call for the appointment line to cancel. My dear friend, mother of 2 and 15 years my senior, rushed to that desk and asked for the phone number matter of factly. That boy was startled.
“Huh? What? Why?”
That’s when he saw this behind a stroller full of crying toddler.
“Someone made me an appointment for audiology today. I need to cancel. I’ve been here since 9:00 and I can’t stay for another 4 hours. THIS KID needs to go NOW. I will not wait. What’s the number?”
At this point I was standing at perfect dance posture, hand in a blade, and making this face. He rattled it off and said with a shrug,“You can call if you want.”
If I WANT. Yes, I’d LOVE to. This is my favorite thing to do. Let me get home and spend another hour on hold to do your job. Cue up Tom Petty, because I won’t back down. He saw this:
Now, the saving grace is that I had baked thank-you cookies for another doctor in that clinic and brought them that day. When she called to thank me I briefed her on the morning. She was appalled and helped me combine two appointments for the following week so that I wouldn’t have to make two trips. It will save me a minimum of 2 hours, 3 childcare credit hours, and lots of sanity. Never underestimate the power of cookies and thank you notes.
(Deep healing breath)
What came of this was a much-needed step back. I proceeded to call and cancel every appointment that wasn’t essential therapy and declared that if it really was a matter of life and death, they can send an ambulance. More than that, when I firmly took a stand against a rude receptionist and refused to let a health care system dictate the lives of my kids, Firstborn stopped crying. He watched as I fought for him. When I buckled him in, he hugged me and relaxed. He was asleep by the time we got home. Apparently the time I spent earning the medical degree of motherhood actually taught me something. Hopefully my kids will learn it too.