The Most Annoying Part of Special Needs Parenting

Some people may think that the most frustrating thing about being the parent of a child with special needs/medical fragility is the child’s needs themselves. The constant fear of hospitalizations, the struggle to reach milestones, the endless quest to find the right mix of medicines.

However, while these things are indeed frustrating and tiring, what’s even more tedious is the day-to-day struggles that we parents deal with. Here are a few samples of recent conversations. (Names have been changed to protect the innocent.)

Medical Supply Company

8 AM
Mom: Hi, my daughter’s feeding pump doesn’t seem to be charging.
Rep: I’m so sorry about that. I can get another pump out to you today.
Mom: Great. How quickly will it arrive? She uses the pump for lunch around 1 pm.
Rep: No problem, the pump should be there in 3-4 hours, so no later than noon.
Mom: Great, thanks.

12:30 PM
Mom: Hi, I’m calling about a replacement feeding pump that should have arrived by noon.
Rep #2: Sorry, let me check on that. (long pause) Oh, it looks like the replacement pump won’t arrive until at least 3pm.
Mom: I was told that it would arrive by noon.
Rep #2: Sorry about that m’am.

Pharmacy

Pharmacy Tech: Hi, I’m calling about a refill order that you placed for your daughter.
Mom: Yes, I’ll be at the hospital tomorrow and can pick up the compounded medicine.
Tech: Oh…well, you should have enough of your current medicine to get you through the next 3-4 days.
Mom: Yes, I do. But, I will be at the hospital tomorrow and can pick it up rather than go through the hassle of delivering it.
Tech: Oh, it’s no problem. We’d rather not overlap since the compounded medicine is only good for 28 days…so we’ll deliver it to arrive at your home on Tuesday morning.
Mom: OK. That’s fine.

(Next day)

Tech: Hi m’am. We have your daughter’s medicine here for you to pick up.
Mom: This is Michelle, right? We spoke yesterday about you delivering it on Tuesday morning.
Michelle: Oh, right…but I saw on our clipboard that it was to be ready today, so we got it ready for today.
Mom: Well, I don’t know about your clipboard, but we are now home from the hospital, and I’m not coming back to pick it up. You’ll have to remake it and deliver it for Tuesday.

Prescription Drug Benefit Company

Dad: Hi, I’m calling about my daughter’s compounded solution of Prevacid. It seems that the Pharmacy is having trouble running it through insurance because of a specific ingredient they have to use.
Rep: Which ingredient?
Dad: Ironically enough, it’s just purified water. They can’t use any of the sugary syrups due to my daughter’s special diet, and the other ingredient–sodium bicarbonate–is on backorder. So they just want to substitute purified water. However, your computer system is not accepting the purified water as an approved ingredient.
Rep: You are right, the computer is not telling me it’s an approved ingredient.
Dad: What is your common sense telling you?
Rep: Sorry sir, the pharmacy will have to fax in the label for the purified water and our pharmacist here will have to approve it and an NDC code needs to be entered into the computer for it to be approved.
Dad: Can’t you just put an override in the system so my daughter can get her medicine?
Rep: I’m sorry, we can’t do that.
Dad: How about I run a bottled water over to the Pharmacy for them to use?
Rep: I’m sorry sir, this is our protocol and it will take at least 15 days to get this resolved.

(15 days later)

Dad recaps conversation above.
Rep: I’m sorry it seems there is no way to get this entered into our computer.
Dad: Really? We did everything you said. The pharmacy sent the information, and you’re still not able to approve it?
Rep: We just can’t get it in the computer as an approved ingredient.
Dad: So, you’re telling me that because your company can’t figure out a way to get it in your computer my daughter must go without her medicine.
Rep: I’m sorry, sir.

Add about thirty other similar conversations and there you have it…the most annoying part.

Note: A third character, Inner Monologue, has been left out due to the dialogue being laced with profanity.

Cathy McCann is the mother of Sadie Elizabeth McCann, who was diagnosed with Aicardi Syndrome, a rare genetic disorder. Sadie was born on April 29, 2010 and earned her angel wings on November 19, 2013. Cathy works as a freelance writer/grant-writer/ghost writer and blog contributor. To learn more about Sadie and her adventures, visit Sadie’s Journey.