Hijacked…

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!

SpOokY FuN!

It's my favorite holiday and was the best to date since I've had children.  We kicked it off by Trick or Treating in Old Town, Ft Collins, yesterday with mom, my friend Heather and the girls' friend Samantha.  We finished the morning off with a nice lunch at Rasta Pasta over a beer.

Today, mom came out and helped us.  We took the girls Trick or Treating around the neighborhood early evening while Joe handed out candy...his choice!   One of my neighbors said, "We need to be the neighborhood that Trick or Treats with a glass."  The next house I went to the fella says, "would you like a drink?"  That's my kind of Trick or Treating!

Happy Halloween!

Here’s the skinny on the circle….

Aliza Mae:

October 20th - 9 months old

22 lbs 14 oz

29 ¾”

She is crawling everywhere and pulling up on anything she can. She babbles a lot and has a great sense of humor. I must admit she brings a lot of fun to the house. She eats anything she can and shovels it in like there will never be another meal. She also LOVES to root like a piggy in her crib; especially after bath time…soft blankets are her thing and I will try to capture it on video to post soon.

We will be on a ‘Pumpkin Patch Field Trip’ on Tuesday. It is with Anchor and is in Longmont, very close to home. Then there will be a couple of Halloween parties at both schools on Wednesday and Thursday. Followed up with trick or treating on Saturday if weather and child permitting.

Ava and I will be attending Honk! at the Arvada Center in a few weeks. It is the winner of the Oliver Award for Best Musical and is an audio-described performance for the blind and visually impaired with preferential seating. The play is the story of The Ugly Duckling with some “contemporary hipness”. Mom is taking the day off to watch Aliza and we will attend with two of Ava’s pre-school friends and their mothers. It should be a wonderful morning; we don’t get to do things with out little sister much.

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:

http://www.myubam.com/ecommerce/results.asp?sid=N1540&gid=88401205&bfid=BF34033&cid=3110&page=11&submit=Returning&sqlwhere=+t%2Eid+in+%28select+productid+from+vcategorygroupsitems+where+categoryid+%3D3110%29

Joe and I celebrated our anniversary a few days early last night. We had a nice meal, sans kids, at the Stone House in Ft Collins. 9 years married, over 11 years together and I’m feeling a bit aged just typing that…. Next year we plan to be in South Lake Tahoe; that's where all this trouble started ;)

Busy Bees

Fall time on the Front Range means ski season in the high country and that makes me smile. I love fall and I must say that skiing has grown on me since moving to this beautiful state. Last week a couple of ski areas opened and I can hear a faint echo….Amanda, ski Loveland, we have plenty of Miller Light at the Rathskellar for you.

Since my last post we celebrated a 4th birthday, got the icks (again) and attended a party, for grown ups. There is never a dull moment it seems.

Miss Ava’s birthday party went well. We had it in a park close to home and it was a beautiful morning for the kids to play and gobble up cupcakes. Ava wasn’t having the best morning but it worked out just fine. We can’t always be happy and the way things went all summer, we’ll take the grumpy Ava in lieu of the irate Ava. We also visited her neurologist last week she gave us a few things to think about and ordered an EEG for sometime in December. I’ll post more about her health in November after she visits the special care clinic at Children’s Hospital.

Ava also hung out with Ervin Johnson (6’11”), retired NBA player and liaison for the Nuggets. It was a day to learn concepts about BIG and small at Anchor school. She has also been very active sorting colors (yes, doing this on her own), trying very hard to talk more and using dad’s ski poles to walk and stand with. I can’t say enough about how far she has come since settling in at both schools this fall. Her teachers are impressed; it took me a while to convince them she needed to be challenged. I am very proud of her; I couldn’t have imagined this scenario in August.

Aliza has decided that she is going to crawl and would really like to walk and talk too. She keeps me on my toes, the busiest bee in the bunch. Baby gates and cupboard locks are in full use; this is an obvious change from Ava’s baby years but is proving to be a very good motivator for the big sister. It is kind of like having twins, 3 years apart. Miss Liz is certainly the yin our yang needed!

Things are starting to look up a bit. My girlfriend wrote a great blog on grief last week and I must say she hit the head on the nail…sometimes life just goes on….and on….and ooonnnnnnnnn. Here’s to a different day!

*Muah*

Fear Itself

It seems to be getting harder and harder for me to find time to update this blog. The thing with that is I like to update my blog, it provides me with 10-15 minutes of time for myself. Better yet is that I am starting to gauge my "wellness" by the number of blogs I post in a month...it is therapeutic in nature to let all my frustrations bleed out through my fingertips.

So, let the therapy begin!

I'm not going to lie, it has been a particularly hard year to date for me, for all of us on Podtburg Circle. Having Aliza in January and dealing with Ava's health issues and med changes has taken a toll on me. I can not remember the last time I slept more than 3 hours at once, had 1 hour of quality alone time or a trip to the mail box that didn't include some type of medical bill, explanation of benefits or other reminder of the inevitable at our house.

Then there is public pre-school. I can't believe what a loop it has thrown me for. It has taken a bit of time for me to identify the stress it placed on me but it is much like my initial feelings when Ava first got sick. I think it is hard for folks with "typical" children to understand the perpetual cycle of grief you enter once you know your child's life will not and does not look like you expected. Normally when we grieve loss, it is GONE, not just the idea of it.

I think the very fear which has disseminated and strained many relationships in our lives is knocking on my own door. I keep thinking, what are you scared of girl? Put your big girl panties on and deal with it. After all, it is only pre-school.

Then FDR echoes through my mind..."The only thing we have to fear is fear itself"

So, what is it I am fearing? Currently I think the fact that most folks relate to my daughter as different. Not just different though, SCARY different. The kind you want to pity, whisper about to the person standing next to you, turn and run from because you don't understand it or know how else to deal with it. The kind I have been able to shelter her from. The fear itself good 'ole FDR was referring to.

The real kicker is that deep down, I know these are the same fears that folks we have distanced ourselves from in our family and circle of friends experience. Then I think, Amanda, you know how fabulous Ava is. You know how smart, beautiful, funny and REAL she is. You know that she is going to persevere and she is just as much typical as the next kid. It is all the OTHERS whom don't yet know this. This is NOT your first rodeo.

For now, I find peace with the fact that it is the others, not us. Although I can't change that I have finally learned that I am in control of one thing everyday and that is the attitude I decide to take the world on with.

So, if you have been thinking, that girl has finally gone crazy, you should know it is a very short drive for me to get there. Also, thank you to those who have put up with me lately ;) Know that I hope to move past this soon! Expect an update on the girls shortly.

*MUAH*

Sunset in the Country

Finally I am going to blog about my big summer event. Can you believe it? Most of you are probably thinking; Sunset what?? Here is what Anchor Center posted on their website about the event:

By all accounts, this year’s Sunset in the Country Dinner and Auction, held on July 31, was the best ever. A record 600 guests and 54 table hosts partied under the big tent, sublimely decorated in shades of blue, yellow and green.

Our hosts James and Pam Crowe treated their guests to a table decorated with a Dr. Seuss theme. Obsk from the Mountain of Tobsk (a character from If I Ran the Zoo), was the centerpiece, as tall as the tent itself and a landmark for all to see. The table was bright with childlike greens, blues, yellows and pinks. A Dr. Seuss book in Braille was at each place setting. After the event, Pam generously donated these books to the children at Anchor Center.

Sunset 2009 was memorable in other ways: For the first time ever, Sunset was held on a Friday night and featured a Junior Patron ticket level for young professionals. A record number of parents of children enrolled at Anchor Center participated as hosts or guests. The parents of preschoolers Haley, Ava and Abby hosted 30 guests at three tables, which were decorated with a “Pretty in Pink” theme in honor of the little girls.

In addition, it was the first time a dad was the guest speaker. Rob Lindley told his family’s story of bringing home a medically fragile and visually impaired newborn who struggled through the first few years, but with the help of Anchor Center teachers, is now a thriving six-year-old. Rob called his son Aidan his hero.

Best of all, more than $130,000 was raised for the children’s programs at Anchor Center. Thanks to Mary Rogers, Joan Dixon and Denise Murray for chairing the event with energy and enthusiasm, and the many committee members, volunteers and other VIPs who made this year’s Sunset possible. Our special thanks to the Crowes, Dinah Sink and Deb Ribis, true friends all to the children at Anchor Center.

To thank Jim and Pam Crowe for hosting four Sunset events since 2004, Anchor Center is naming a classroom at our new teaching facility after the Crowe family. The inscription, to be engraved on a granite threshold at the entrance to the classroom, was inspired by Pam Crowe’s table décor this year. It will read: Oh, the Places You'll Go! The Crowe Family.

Beautiful doesn't describe it or the folks willing to donate THOUSANDS of dollars to make my families life a bit richer. The starting bid at the live auction was a nice lady who "just wanted to donate $15,000, not buy anything". For as much money as half the room possessed no one felt like they were to poor to hang or too rich to mingle.

Rob's speech was incredible and inspired a room full of tears. Justin and mom were sitting closest to me and even they were victims of the amazing energy that came over the tent. After the auction I was trying to explain to Rob how impressed I was that he could capture Aidan's journey so eloquently in a few short pages and he said, "Amanda, it is OUR story, none of us have taken this journey alone." Rob, you will be a tough act to follow!

In short I had a fabulous time hosting and plan to again next year. My co-hosts Roberta, Franco and I sure know how to party it up in pink. What better way to give back than getting involved with an evening like that? Currently taking table inquiries for 2010, I only have room for 12!

Big Girls Don't Cry

Here we are; two preschools, a Chinese Medical Doctor and many long hard months behind us. Best of all...tomorrow marks the BIG birthday month in our house, lots of cake to eat this month and one 4-year old coming up. What does she want for her birthday?

16" Ocean Drum - West Music
Winter Coat (Size 5)
Socks - (around size 9)
Hat & Gloves
Snow Boots (Size 8 1/2)

Ava seems to be getting back to her normal self this last week or so and it couldn't come a day sooner. We started her back on a small dose of topamax (for migraine prevention) a couple of weeks ago when she was unable to make it through the first day of Anchor preschool. It seems to be working, no more excruciating pain in her head, no more screaming for hours or days on end. The momma needs this, I was ready to commit myself ;)

Ava also visited with Dr Fratkin, an Eastern Medicine Doctor, last week. I wanted to try some acupuncture and he will actually be teaching me how to do what he would do in this area. No needles are used on children this young and he is ordering the "tool" I will use. We have some lab work pending concerning gluten and are using some herbs to combat the effects on her liver from one of her seizure meds. She seems to love her "Ancient Chinese Secret Herb" as I call it...she cracks up and opens wide for it. Too bad that didn't work with her Trileptal! It was a stretch for me but I really, really liked and respected his balance of Eastern & Western medicine.

How about Liz??? She is growing and changing daily. She gets around but I wouldn't yet call it organized crawling. She has at least 2 teeth and is wittier by the day. We will have our hands full with that girl, she is headstrong to say the least. We are enjoying some time to bond with out big sister while she attends school

That's all the time I have for now. I hope this finds you all excited for the upcoming fall and football season. At least football fans like beer!