[flickr id=”6982397429″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]It was bad enough last year when he hit the all too frightening age of 13. A teenager.
Then I get this in the mail.
“Freshman Course Planning”.
Suddenly we are talking what sort of diploma he’ll be getting. Extra curricular activities, electives, college courses taken at high school level.
It’s all happening too fast.
Forever he’ll be my baby…
But he’s not a baby any longer.
[flickr id=”5293689107″ thumbnail=”small_320″ overlay=”true” size=”small” group=”” align=”left”]I have spent the past 3 months jumping through hoops. Doing everything the government asked. Going to appointments that seemed ridiculous. After all, she is covered by SSI for Cystic Fibrosis. It’s a set diagnosis. It’s not going to change.
I thought it was just normal. Three years had passed, they did a re-evaluation and we’d go on our merry way as we had been.
I never imagined we’d get a letter declaring the cessation of benefits.
That somehow, according to the government, Cystic Fibrosis is a condition that stands the chance of improving.
That somehow, 2 hospital visits, the addition of a very costly monthly med, a decrease in vitamin levels, a continuing need for nutritional supplements all equal an “improvement” in her condition.
I’ve already met with the lawyer.
Filed the appeal.
I get to go to court (woo-frickin’-hoo).
Continue to jump through their hoops. This time w/ a good lawyer on our baby’s side.
Stupid government.
Time sometimes flies like a bird, sometimes crawls like a snail; but man is happiest when he does not even notice whether it passes swiftly or slowly.
~Ivan Turgeney
Thirteen years ago this minute, as I was in labor, I still thought he was a girl. The ultrasound said girl. Everyone said girl.
My dreams had said boy.
My morning walk to induce labor I had stopped not at the girls clothes rack, but at the tiny little suits, ooh-ing and ahh-ing over the teensy little ties.
After three false labors I was forced to sit in the hotel room my Mom had reserved utnil I “Finally” stopped screwing around and gave birth already. (For the record, Brandon was only 1.5 hours “early” for his due date.) When my contractions were finally 3 minutes apart, my mom called my OB, who then demanded to know why we waited. She, in her dry and sarcastic glory informed him that she wasn’t about to take me in if I wasn’t going to actually have the baby.
And so Brandon made me a parent. With his perfectly round head and surprise appendage that made him decidedly NOT a girl, & made me wonder how in hell I was going to raise a boy.
But he was perfect.
The gorgeous blue of his eyes made me fall in love in an instant.
Everything on time. Every milestone reached at JUST the right moment. Every clothing size changing right at it’s declared time (0-3 months? Gone at three months. 3-6? Gone at six…it was eerie).
He was happy. Smart. Playful. Loving.
He was my world.
He was my mom and dad’s world.
The first born grandchild. The first born great-grandchild.
The star.
Our family grew. It changed.
Not always in the best, most fair ways for him. In truth, sometimes he was forgotten, because he was so ‘perfect’. So easy in comparison. (I hate myself for it, but it is true).
It never made him less loved.
In many ways, being the parent of a teen is infinitely harder than raising the young ones. He isn’t satisfied with easy answers. He sees the world around him in such a different light. He sees things that a younger child wouldn’t. He understands and absorbs everything. Things that I sometimes haven’t the slightest idea how to explain to him, to clarify.
Right now he is struggling, battling against an internal battle I can’t resolve for him. Fighting against the common, and always unique and personal pain of being a teenager.
But in his heart – he is a good kid. He is smart. He is still loving.
He is annoyed with his parents. Embarrassed that his mother has a tattoo and plans more. He hates failure. He strives to do his best and no one is harder on him when he fails than himself. Interested in photography. Science. Math. Writing. Cross Country.
He dreams big dreams. Of being a doctor at Riley so he can help other kids like him.
He achieves big things. Advancements in Boy Scouts, Junior Honor Society.
He struggles to fit in.
He is 14.
In so many ways.
He is my baby.
In so many ways – he always will be.
Happy birthday to my oldest, my first born.
14 is a big number. But you’re just getting started.
[flickr id=”5748019048″ thumbnail=”medium” overlay=”true” size=”small” group=”” align=”center”] [flickr id=”5888954984″ thumbnail=”medium” overlay=”true” size=”small” group=”” align=”center”] [flickr id=”6087274981″ thumbnail=”medium” overlay=”true” size=”small” group=”” align=”center”]
[flickr id=”5888961016″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]Four years ago we jumped through hoop after hoop. We went to all of the exams, evaluations and tests needed for Angel to get qualified for SSI.
We were denied.
It took getting a disability lawyer to send in the paperwork for them to say yes.
Three years since our official qualification (thanks to the lawyer & the lovely fee they took out).
Now we are up for review.
For CF.
CF is not currently a disease that gets BETTER.
So we jump through the hoops again.
Pray that this time we aren’t denied again and are forced to go back to the lawyer to push the government back into reinstating what we’ve been qualified for for years.
It’s not like we’re trying to bilk them. If we were we’d reapply for Riley. We’d apply for Brandon. I’d work if I could so we didn’t need the SSI, but as we so recently realized that’s not a possibility if we’re to keep Angel on the insurance we so desperately need to keep.
I’m tired of jumping through senseless hoops.
Angel has CF. What is the purpose of a Speech evaluation and a psychological exam? They have no bearing on her disease at all. None.
Stupid hoops.
[flickr id=”5944091199″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]Two years ago I made a 45X45 list. 45 things I wanted to do before I turned 45.
Considering this year I turned 35 (yikes) and now have about 9.5 years left at this point I thought I would revisit it. Change up a few things and see what I can do.
Items in Red are DONE. Complete. Finito. (You know, those two little lonely items on this list).
Items in Purple are new…a change from my original goals/dreams
***********
45 X 45
[flickr id=”6030468849″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”] Back in March or April I decided to challenge myself. I’m attempting to be a published author, but I was reading very few books. It wouldn’t do. So I decided to push myself to read 50 books in 2011. For a while it appeared that I was going to totally leave 50 books in the dust. In October I had hit 45 books. The last 5 were supposed to be a piece of cake.
Turns out I just squeaked it out. I read the last book on December 29th and completed the challenge. I’ve set the same goal for myself in the new year. Here’s what I read in 2011: