Thursday, March 22, 2012

{Why my daughter deserves SSI}


These days we all know someone that has worked the system to get benefits from the government that maybe they don't really need. Whether it's stretching out unemployment benefits because due to the economy you figure you can make more on unemployment than taking a job that pays less than you made in your hay day --- disability that is stretched out to be more than it really disables you --- or giving an oscar worthy performance to be able to claim worker's comp.

This is not the case with my daughter, and I will tell you why.

Although she is doing well now, with only a few continued medical concerns {ie choking, a heart PDA, hip dysplasia, and undetermined developmental effects from her brain bleed} Things weren't always this "EASY" {obviously, I use the word "easy" loosely and with the perspective that things have been a lot worse}

Back in January, I found out that preemies can qualify for SSI, and my husband and I immediately made an appointment to bring her in and file.

THey told us that it may take 3-5 months to reach a final decision, but that if we could bring in our medical records we should be able to start getting paid within 2 weeks. We brought everything in, stacks of paperwork documented with more procedures than I can even count, and the woman conducting our interview said that we had such good documentation that we should be able to start getting paid soon.


Here it is now, at the end of March--- my daughter is coming up on 5 months old, and we haven't received a penny --- all we have received are more appointments.

I've been researching whatever I can find, and unfortunately found today that my daughter may be disqualified from receiving payments due to the fact she was born mere 2 ounces over the 2lb 10 oz cut off! Keep in mind that my daughter couldn't eat for almost 5 days, and she ended up losing close to half a pound, and that she wasn't just born premature --- she was born premature AND sick with septicemia --- so sick that all the optimistic survival statisctics out there for preemies didn't apply to her.


Some people feel that prematurity doesn't warrant a disability claim, but let me break it down for you ---

At 23 weeks gestation I was hospitalized with bleeding and preterm contractions and was immediately placed on strict bed rest at home for the duration of my pregnancy which qualified me for disability for an estimated 17 weeks until my due date.

At 27 weeks my water broke, and I was then placed on hospital bed rest until my daughter was born, which by the doctors accounts could happen any minute, or still be months away. I made it 2 more weeks. I delieverd Brontë at 29 weeks via c section.

This is how it would have broken down --- had my body not deteriorated any further, and I was able to stay pregnant to term :

17 weeks of disability prior to delivery
8 weeks disability for c-section recovery
6 weeks state paid family leave

That's what by all standards I should have been paid.

Instead my even further deteriorated body and premature baby who was being kept a live by life support were awarded more medical bills and less disability - personally receiving disability for only 5 weeks out of the estimated 17, and my daughter [because of a fluke 2 ounces of water weight] hasn't received a penny, when her estimate was $768/month for her first year.

So, as it turns out, we would have received more aid from the state from being LESS disabled! How's that for a broken system?!

Tuesday, March 20, 2012

{slump}

I haven't wanted to write in the last week or so --- actually, that's not true --- there have been almost too many things I've wanted to write about --- too many things that have been weighing down my heart and stirring my soul --- I've made attempts to start writing at least 2 or 3 times this week, but I can't seem to bring pen to paper finger to keystroke.

Each time I have attempted to write, my thoughts are interrupted with other thoughts, other heartaches --- ferocity of obvious injustice --- personal loss --- empathetic pain for those I know and those I only know of --- tears for both specific and abstract brokenness.

Lord, teach me --- why have you given me this burdened heart?? Focus these wild emotions and refine them to reflect your heart --- Give me words for the broken, the strength to stand for those who can't do so themselves, and a voice that will speak Your truth into the void of lies this world believes.

Wednesday, March 14, 2012

{Wordless} {Luv me some Mr.a-z}

I'm a long time fan of Jason Mraz, and I'm loving this song right now --- can't wait for his next album.

{You may want to scroll down and to the right to pause my blog playlist}

Saturday, March 10, 2012

{Underestimated:} {Fiction}

Personally, I've always found there was something special about fiction --- So much so, that I named my daughter after 19th century female novelist, Charlotte Brontë --- Some may say, I enjoy fiction even to a fault. To quote my oldest brother Troy, {who has a particularly comical beef with how much I --- and most every other woman --- hopped on the Twilight Train}, "Emily, when are you ever going to read a REAL book". LOL

Sure --- true stories, life application, self-help, books on politics, religion, history, science, and other non-fiction works seem to have the OBVIOUS literary upper-hand, but I came across an article recently that serves as a great explanation for my previously unexplainable draw to fictional stories and characters.

In a way, I would argue that fictional stories are many times more real and more truthful than some "true stories" --- Think about it --- Biographies, as well as autobiographies, are written as true stories of someone's life, but undoubtedly, they are written in a way to enhance, by inclusion or exclusion, what will most surely support the writer's personal agenda of how they would like the subject to be viewed --- In other words, "History is written by those who have hanged heroes".

The article I read specifically brought to light the importance of not only reading to our children, but reading fiction to our children as a way to help them learn empathy, "Which in turn helps our children develop a heart of compassion for a broken world".

Fiction, although "not true" in the sense of "actual events", is based off of the truth of "what could be", and the plausibly real, raw, and reactive, human emotion that proves to be the momentum that propels characters from point to point throughout a story. There is a sense of truth in characters interactions with each other and in response to circumstances, that is relatable to the majority of people as a whole.

Fiction allows what reality usually doesn't --- the ability to see past ourselves and through the eyes of another, taking on their burdens, feeling their loss, their elation, their sacrifice, their hope, and their love. Fiction let's us exercise empathy, a practice that can then be translated into our non-fiction reality.

What I'm not saying:

I'm not saying that truth is relative.

I am a firm believer that there is absolute truth. I believe that we are to "love our God with all our minds", and so challenge our minds with continuous, fact based study, but many times people fall to one extreme or another --- either we're all about the touchy feely emotional stuff, or we're too scientific and frank about what should shake us to the core.

What I am saying:

We serve a God who is full of compassion, and if we want our children to grow to have the heart of God, we need to excercise empathy as a spiritual discipline. Jesus himself used parables (fictional stories) to teach, and if the Messiah thought so highly of fiction, why shouldn't we?

Thursday, March 8, 2012

{Welcome 2the World} {Jaden Rose}

At 6:08 this morning my brother and sister in laws met their daughter ---

--- Jaden Rose ---

What a treasure you are! Your Uncle Nick and I can't wait to meet you, and we hope you always know the depth of love that supports and surrounds you!





Love,

Your Aunty Emily xoxo

P.S. Your mommy and daddy are about as rad as it gets!

Wednesday, March 7, 2012

{Loving by Example}

I have realized over time, that the hardest person to love and to accept is many times the girl in the mirror. Not that I'm entirely self deprecating, but I have, as contradictory as it might sound, been self critical to the point of narcissism. I have spent an exorbitant amount of time picking on myself --- Those few extra pounds, my less than perfect complexion, my body shape, the assymetical lines of my face etc.--- you stare long enough, and everything starts looking weird.

In the last 6 months my body has taken a beating --- pregnancy and two major abdominal surgeries since August have left my body in visible shambles, and like I already said, prior to this I already had a problem with self image, and so, as you can imagine, it can go into over-drive if I don't purposefully keep it in check.

Nick is and always has been a spring of encouragement. He tells me that he wishes I could see me the way that he sees me --- and sometimes I think I do --- until that thought is interrupted by the sight of my reflection. I've cried to Nick on more occassions than I care to admit these past 6 months that I feel like a crazed butcher has gotten a hold of me.

My keloid scar from when I was pregnant didn't even have a chance to heal nicely due to the fact I was gaining about an inch around my belly every week during that time, and though my c-section scar has healed nicer in comparison, it's still about a 6 inch slash through my abdomen, and an ever constant reminder of our honestly terrifying birthing story.

The day Brontë came into this world was the most monumental day of our lives, but nothing about it was anything short of terrifying --- I wasn't supposed to have a tumor. I wasn't supposed to need surgery half way through my pregnancy. My water was not supposed to break at 27 weeks. I wasn't supposed to contract an infection. I wasn't supposed to get Brontë sick. She wasn't supposed to come so early. She wasn't supposed to be breech. I wasn't supposed to have a c-section. My body WAS supposed to hold up, instead of crapping out. I'm her mom, and I WAS SUPPOSED TO BE ABLE TO PROTECT HER --- and those heinous scars are the permanent reminders that I couldn't.

But God...

He always knew the plan. He always knew what was SUPPOSED to happen, even though I didn't. He always knew that He would be the one to get us through, and these ugly scars are the beautiful reminders of his provision ---


--- and I choose to love them.

I choose to stop being so self-critical. As her mom, I must lead by example. She is always watching me --- learning behavioral cues --- and before long, she will start to imitate me. I will not teach her to be self deprecating. She will never hear me say that "I'm fat" or "I'm ugly". I will teach her that we are made in the Imago Dei --- the image of God --- We are HIS workmanship -- and OUR reflections are not our own --- they are HIS, and they are lovely. I will choose to love --- by example --- my body, and teach her the perfection of imperfection, the artistry of asymmetry, and the beauty of our scars.

Tuesday, March 6, 2012

{Messy Mondays} {Month Re-Cap}

It's been a month since I started Messy Mondays in hopes of making over the various messes in my life, so this week, I thought I'd just let ya in on a little then and now re-cap.

I am proud to announce that I have, indeed, written and sent out the majority of the thank-you's that I mentioned last week --- {a small feat for some --- a HUGE accomplishment for me}--- and BONUS! I did end up create a big girl address book with the addresses I had to gather for them. So, hopefully next time we need to send things out it won't be such a circus to get it done.

Also, in regards to {Messy Monday} {Fashion Trends} I am NOT brushing my eyebrows up to be "power brows", but I am getting away with a pretty nude face these days using too-faced BB cream and little to nothing else --- the knotted mohawk has not made a reappearance, but a few twisted/braided, easy/messy up-do's have been fun/functional in keeping my hair out of my/Brontë's face {Holy slashes Batman!}

As far as our move and the de-cluttering are concerned --- it has taken quite a bit longer than planned --- it was honestly not until this weekend that I actually felt moved in, and almost immediately realized that I still have some major de-cluttering to take care of --- specifically shoes --- how did I accumulate so many pairs that I don't wear?

In general, I have definitely made attempts at being more organized, but not all of my attempts have been successful --- but some have been --- and that's the point. I didn't expect to have solved all my messes in 30 days --- success is gonna take time, error, and practice --- and for that, I'll keep ya posted.