Wednesday, March 23, 2011

Hurry up and wait!

One of the many things you never expect when you're a parent is to have to wait to find out what's wrong with your child. Most of the time it's pretty simple when something is wrong. Ear infection, strep throat, sinus infection, bronchitis, broken arm, sprained ankle - all relatively simple problems that you get an answer to pretty quickly. Even when a woman thinks she's pregnant - it's pretty simple. Pee on a stick or go to the doctor for a blood test or a glorified pee stick. At most you have to wait a few hours and you know.

When something isn't as simple - the waiting is terrible. I admit - I am one of the least patient women on the planet. If something is wrong with my child - I want to know what it is, what is the plan of action and what do I need to do? That does not happen when it comes to "developmental concerns." There aren't any simple answers. All the paperwork in the world that is filled out still doesn't bring a simple answer. When the appointments finally came for the girls to see the developmental pediatrician - I did expect to walk out with an idea of what was wrong. I expected these long awaited appointments to yield some form of an answer. And I was wrong. WAY wrong.

After waiting for what seemed to be hours, all three of the girls get called back to see the "developmental specialist".  I half expected someone that looked like Dr. Freud or Dr. Spock even to come into the room with this arrogant personality and sense of self assurance that would make me instanteously better about the situation. I expected someone to walk in and already have an idea of what was wrong because of the copious amounts of paperwork I filled out would have given some answers. Nope. Wrong again.  The doctor that walked in was young, intelligent looking but young. And of course he wasn't the actual "specialist" - he was the "fellow" (aka glorified student that's still learning and has to run everything by someone else who then presents to the actual specialists) but he was a doctor so that made me feel a little better. (not by much) 

He had a name that made me want to laugh because he obviously wasn't a Flake, but he name was Flake. He was the first of several developmental pediatricians that the girls would see. But, he did make me feel somewhat better because he had alot of patience and the girls all seemed to like him. He asked ALOT of questions, took a very detailed family history and then let me know what his actual job was. Which, at the time, didn't seem all that different from a regular pediatrician. But, he had one power that I had yet to hear of and would later find out to be a golden ticket to a magical service that I would need - alot. He had the power of the "referral". Referral would become something that I loved and hated all at the same time. Without referrals, the girls didn't get what they needed. Without the right referrals - the girls didn't get what they needed. Without the perfectly worded, sent to the right people, dated with the right dates - the girls didn't get what they needed. And Dr.Flake was the ultimate provider of those referrals.

After 4 hours in a small exam room being asked lots and lots of questions and feeling like anything I ate, drank or smelled was wrong - we were done with that appointment. I left feeling overwhelmed, confused and insufficient. The girls didn't have a definite diagnosis. I didn't have any answers. I didn't know what to do or which way to turn. I had a 3 pieces of paper with lists of appointments and dates on them. 1 piece of paper for each of my girls with appointments for all sorts of tests and exams and lab orders. How could their little bodies handle all of those tests. Even though they weren't alot by any means, how could they handle all of it? Why did they need them all? What did Dr. Flake plan on getting from all of these tests? What did he think was wrong with my kids?

I remember sitting in that room before we left asking him what he thought was wrong with my girls. He tried to give me the "vague" answer that was completely nonspecific and didn't give me any direction to look in. I told him that I wouldn't hold him to anything, but I needed to know what it wasn't so I could start to accept what it could be. He spouted off all these things that it "couldn't be" and I remember looking him in the eyes and saying "well that's great, but what could it be?" He talked about "Borderline Mental Retardation", "Pervasive Developmental Disorders" and "Non-Specific Global Developmental Delays". He talked about how Occupational, Speech and Physical Therapies could help the girls gain some of the skills that they were lacking and to help them catch up to their "same age peers". (Which he had put referrals in for evaluations and therapy sessions)

I still don't remember leaving that appointment. I don't remember driving home. I don't remember much about the rest of that day. I do remember looking at the 3 sheets of paper seeing dates and times and places that I had to get my girls to in order to find out what was wrong with them. I remember seeing my girls with different wires and leads attached to them looking for seizure activity. I remember holding them down as the doctors and nurses took tubes upon tubes of blood from them looking for "genetic defects". I remember answering the same questions over and over and over and over again at evaluations and therapy appointments.

I remember sitting in so many different rooms hearing where my children were "delayed" or "grossly delayed" in areas of their development that these therapies would "help them reach their therapy goals and developmental milestones". What I remember hearing more than anything though was that in one way or another I had failed. It didn't matter how many different times the therapists or doctors would tell me that "it's not your fault" or "there's nothing you did that caused this" or "you've done everything right, you shouldn't feel guilty" or my all time favorite "you've caught this early, they'll catch up in no time." None of that mattered. All I knew was that these little girls were given to me to care for, love and raise to be healthy, beautiful women. And for one reason or another - there was something wrong with them that was preventing that from happening.

What that was, I still didn't know. No one seemed to be able to willing to tell me what that was. What they did tell me was that it was going to be awhile before we knew what "it" was exactly. That's all anyone seemed to be able to tell me.

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