To Ava's dismay, we took the girls for photos today. Aliza has never had photos taken so the focus was on her, especially with her sister's attitude towards the situation and day. As you can see, Aliza also had her moments. I will reconsider pictures next holiday season! Here's a preview of the frantic photo shoot...
The season of giving certainly is around the corner. Guilty of giving the faithful I-270/Quebec bum tissue packs this past week and I’ll admit I’m not big on supporting corner bums; they probably make way more cash than I. He has occupied the same corner for the past 3 years Ava and I have taken the trip to Anchor Center for the great ‘Thanksgiving Feast’ so why not spice up the last one a bit? I’m also thankful Tom, the turkey, was merely saved by chicken nuggets. Saving turkey’s that talk is good for the preschooler soul!
Speaking of souls and in celebration of “Attitudes of Gratitude” I am planning to attend a book signing for my girlfriend, Heather, to honor her first book publication of the Blessing Bowl story. It is the “Best Of” the new Chicken Soup for the Soul: Count Your Blessings edition. If you are interested in a signed copy or just reading the story and other great stories, please check out her blog at:
http://samsmom-heathers.blogspot.com/
Last week we visited the Children’s Hospital special care clinic in Aurora. We have found a new ‘coordinating care’ provider for Ava whom is a geneticist to boot. Wow! Who knew a hospital of this size could actually have a tiny clinic tucked away on the first floor that might just make our medical care more convenient??? Well, thousands of dollars and 3 years later, we do.
Poor Ava was tortured with 2 shots, a poke for 3 large vials of blood, and a hurt ego. It doesn’t take her long to forgive us and she does much better than her father with needles. Another round of genetic and metabolic phish testing along with a tier two testing for a gene specific syndrome in question are in process. At the visit we were ambushed with H1N1 vaccinations…Aliza was spared and we all survived.
Mom, Jerry and Sue returned safely home from North San Diego County…with their grandma Frances in tow. Yep mother’s, grandma is still alive and currently residing in Loveland, about 15 minutes from my house.
Aliza is recovering from a hand injury of unknown origins. She is climbing up or pulling up on anything she can find and we think she got caught up in a blanket on the bed. Chunky monkey is on the move. The current phase is stranger anxiety but; only at the house and when you wear hats, Ava doesn’t like hats either.
Hooray to my Ipod Shuffle option and Steely Dan for giving me a replacement gig for ‘counting to ten’ in my head to gain composure with this little ditty…
I dance in place and paint my face and act like I belong here.
Throw back the little ones and pan fry the large ones; Use tact, poise and reason and gently squeeze them…
Ha! You didn’t think I was a Steely Dan fan, did you? I have been busy and I’ll give you my short list of what’s on the horizon:
*Larimer County Epilepsy Group – co-moderating with Heather who has done all the training and is largely responsible. We will be meeting in Loveland, the 2nd Tuesday of the month starting in January. Come see us at the Mandolin Café, 210 East 4th if you are interested. The group is for parents and individuals living with epilepsy/seizure disorders.
*Anchor Center Compass Group – Families Guiding Families (a PTO with flair ;) ) - helping with blog/web page creation
*Christmas photos of the girls
*Joe’s Christmas Party – Embassy Suites overnight style
*Another trip to the special care clinic in mid-January
Actually, we are blessed and find ourselves in the season of giving more often than we’d prefer. Some have requested ideas on where to give in honor of Ava for the holiday season so here are a few of the folks who help make her days brighter:
http://anchorcenter.org/help.htm
http://www.epilepsyfoundation.org/
http://www.envisionco.org/index.asp?page=help
http://www.bannerhealth.com/Giving+Back/Banner+Foundations/Colorado/McKee+Loveland/_About+Us.htm
You never know, maybe I’ll think about the 10 things I’m most thankful for this year and share later this week. I’m considering the Turkey Trot in Loveland on Thursday morning. Whatever this turkey day finds you doing, be safe and celebrate!
In my mind, sometime during my childhood, appeared a nice plaid bag. It was an empty bag that seemed large and hollow through the eyes of such a young, innocent, naive child. The instructions accompanying this piece of luggage simply stated, you will need this on your journey through life; fill, empty and refill wisely.
I have had an overwhelming response to my last blog. I feel like I need to explain that sometimes my luggage needs emptied, at least a layer or two. Coincidently, most folks around me have their own bags, filled to the brim. With their own rules too; I’ve learned they don’t always welcome my clutter over flowing or mingling with theirs. They also don’t always see the necessity of cleaning the stench from their last trip out of the bag to prepare for the next one.
It doesn’t make it right or wrong…it just is.
Thank you all for the kind comments, emails and conversation. We all have our own luggage and yours is as important as mine. Please know that my heart bleeds for your bad times and finds warmth and strength in your good. Although my path is different, adversity visits all of our lives, daily.
Thanks for letting me air my laundry, lending an ear like a pro. I know that not everyone is comfortable with the frank, raw style this realist possesses. In general, my life is good, I feel blessed to have all of you with me.
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.
“Hello”
I need to speak to a parent of Ava Jaksha, please.
“Speaking”
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!
If any of you are interested in purchasing Usborne Books please consider purchasing under the following link to support Ava’s Anchor School’s book efair:
