Friday, November 06, 2009


My week has been inundated with the Department of Health and Human Services. In general these are not people that make for pleasant conversation topics. It started like this…

Ring, Ring, Ring.


I need to speak to a parent of Ava Jaksha, please.


What is your name?

“I’m Amanda, her mother.”

I’m calling to speak with you about Ava’s eligibility for the HOSPICE WAIVER.

“What waiver?”

Hospice, it is designed for children whom are not expected to live to adulthood.

“Is that appropriate? Do you know something I don’t?”

Why don’t you tell me a little about Ava?

“Why don’t you tell me a little about why you are calling, offering an evaluation for a hospice waiver. Did I fill out the Long Term Care application wrong? I’m working with Access and Availability. Have you spoken to one of her doctors or folks from their office?”

We got your name from the Social Security office, which is why I am contacting you.

“Ava has been on the waiting list for the HCBS waiver for almost two years, maybe you are calling about that?”

It is my job to offer the appropriate care for your daughter and I am exploring all possible avenues. The HCBS is both income and need based. The hospice waiver is strictly need based. We have had 2 kiddos in the past qualify but couldn’t find proper nursing to administer the care.

“I don’t think this seems appropriate but I will set up an appointment for an evaluation to ensure her name isn’t moved to the back of any list for services.”

Yes…these are the conversations I get to have with folks; they actually dominate my adult talk time most weeks. This particular conversation is to be continued.

Somewhere on this flight through life my plane has been hijacked. Held up, myself and any bit of Amanda-ness (Taz-ness if you wish) that I possessed. These hijackers decided that instead of pursuing my own interests in life that I should become completely devoted to being Ava’s mom (Aliza’s too) and Joe’s wife (scapegoat for relationships gone badly in his own family).

Also it was deemed that I need to be both proficient and efficient at scheduling, nursing, bussing, cleaning, neuroscience biology and child development to name a few.

In short, I miss reading for pleasure, girlfriends (and any time or conversation I can devote 100% of myself to), a career, an hour of silence, or a simple night on the town. I miss being just a mom; I am almost always identified as the mom of a ‘special needs child’.

I am coming to terms with the fact that my life will never be like most of yours…normal or typical, that’s usually the lingo used but I still miss getting a chance to be me. I am not a superhero, some kind of phenomenon sent to deal with the extensive needs of my situation.

I am learning a delicate dance and with in the two steps of my life I must rise to the occasion of taking time to be me again. I crave it like a crack addiction, I suspect, I’ve never had one. Now taking suggestions on how to be a real person again, leave them as a comment if you wish.

Ava is a large project and management is under funded, over budget and understaffed. We try to take life in stride but some days I want to reach my hands out and wrap them around some folk’s necks. Still working on the dance…I will find my grace!


Angy and John said...

For the record...I think you are most real person I know as well as just a mom and a friend. :)

Tosha said...

Well said!I am sure every mom who read this felt the same as I. I complain about my days, my children, my husband and job...but cannot even begin to imagine the hurdles you deal with every day! It makes me want to drive down to Colorado and give you the weekend off!

Robyn said...

Eloquent as always, Amanda. You never cease to amaze me.

SuzieQ said...

I think that Ava is very fortunate to have you for a mother. You are such a smart, strong person and a fighter like no other!! There are so many people that would just succomb to what life has thrown at them, and you are awesome for taking it head on, and defending yourself with knowledge. It is important to make time for yourself. Just a few minutes if that's all that can be squeezed into a busy schedule. I take mine after work. Grab me a coffee from starbucks and stop by the park on the way to Nic's daycare. Just long enough to enjoy my coffee and unwind!!