Tuesday, April 17, 2012

Paperwork, and Appointments, and Referrals, OH MY!

I don't often write about my daughter's condition on this blog, as I have a separate one for her. But this is a blog sharing my life, and well... she's a big part of my life. (Ya think??)
Anyways, it's no secret to me how much of a juggling act it is to be a mom. I'm three kiddos into this adventure, and while I'm still learning every day, I think I've got a notch or two under my belt.
My Little Lady has a condition called Arthrogryposis Multiplex Congenita. (You can read a brief description of it here) Ever heard of it? Probably not, most people haven't unless they have a family member or friend with it. Seriously, it doesn't get enough attention. Arthrogryposis Multiplex Congenita (we refer to it as AMC) is a "rare" condition that (in laymen terms) affects the joints and the muscles of a person. For instance, my daughter has low muscle tone in her arms, and especially her left side. Her knees were hyperextended when she was born, and now, at almost two years old, she can't bend them all the way.
A dear friend of mine (an adult with AMC) told me that he believes it's harder on the parents of an AMC'er than it is on the actual person affected. I think it's true. This morning, is no exception.
Today my daughter has her 18 month physical. No biggie, right? Well, wrong. These "regular" appointments seem the worst of all. Much worse than any of the specialty appointments. To begin, I had to find my daughters immunization record, (this is what started me being super frazzled this morning.) I had to shuffle through a ridiculous amount of paperwork, referrals, assessments, IEP forms, therapy forms, future appointment forms, past appointment forms...
Where is that darn shot record??

Whew! I finally found the stupid shot record. Our old medical office kept them completely electronic. Oh, how I miss that.
After finding the shot  record, I had to find 3 referrals that I've recently received and have questions about. I put them in a safe place the other day. Where was that again?
When the mom of a special needs child goes to one of these "regular" appointments, she gets to fill out the pre-appointment paperwork asking what milestones her child has met. Devastatingly, it's a reminder that my child has likely not met any of the milestones expected of a typical 18 month old. Fabulous start to the appointment, right? Then, the mother and her special needs child are brought to the exam room by a nurse or medical assistant, who is unaware of the circumstance, and treats you and your child as typical. "Can you have her stand up on the scale?" No, I can't. Thanks for reminding me. For us, this is even stretched out a bit longer because visibly, you can't really see my Little Lady's condition (which is an exception for most people with AMC).
Fortunately, we have a fabulous pediatrician, who is actually somewhat familiar with my daughters condition. She acts as a fantastic advocate for both of us. And her nurse is incredibly helpful as well. I'm very thankful for them.
So, between the insane amount of paperwork, juggling so many appointments, and shuffling through the referrals, I'm just done. I am not bothered by my daughter's condition. Ultimately, she will be stronger than I could ever be. And she is simply a joy. But every now and again... I yearn for simplicity. My whole life I've been an organizer and a planner. I think that's helped me out. But what I wouldn't give to just be able to "go with the flow" for a while. No paperwork, no appointments, no referrals.