i never liked clubs

Did you know Oklahoma is one of the leading states in infant mortality? With Oklahoma County (the county in which I live in) being the highest in the state. Yea, well, I didn't know this bit of info either until our family was included in the current tabulations in the running.

During my struggle to right the wrongs and ineptness of the State, I have concurrently been contacted several times by the State Health Department to discuss "my situation" and how the outcome could have been been affected by my due diligence, prenatal care and well, ignorance.

Let's face it. I have now joined a club in which in general, I don't fit the general demographic.

I finally returned the dogged phone calls from the State's office today while trekking through Target. Isn't this the place one should conduct a privately thorough and basic review? Well, I haphazardly did while purchasing the "Organic and Healthy" meat for my family. Is this another case of "irony?"

I started the conversation off by telling the Social Worker I probably didn't fit her "typical" demographic before she uttered a breath by stating I a) have all my teeth, b) had excellent pre-natal care, c) have a "higher education" status, d) was married before I ever thought about getting pregnant, e) took my child to the doctor the day before he died and f) fought the fucked-up system and had the ruling "amended."

I think I shocked the poor woman as she wasn't used to the "interviewee" knowing the full-diagnosis by heart and able to recite the full autopsy report like it was one's own Master's thesis. After further discussion and rumination of my "story," she responded in the like, "I've never heard an autopsy being amended, let alone the parent having the 'wherewith-all' to fight the ruling." My answer was, "What the fuck? (Okay, I didn't say Fuck....) Why the hell not?" See in my world, I've learned to question EVERYTHING! Not accept anything at face value and you sure as hell ask for the documentation to cover your ass (I owe this motto due to a crazy-assed boss who used to grade my financial reports with a red pen. Like I was a child in 1st grade). Hell, I'm the idiot that reads the fine print when signing their life away for a mortgage or a car loan. I don't like surprises and have lived my life trying to make the best decisions for both my family and myself without scary and careless repercussions.

So much for trying to control the uncontrollable.

I have now been included in a "pool" of undesirables. Some who haven't had the luck of education, parenting or love. Some who use the ER as means for prenatal care. Some who wouldn't know how to spell or begin to pronounce "anoxic encephalopathy" if it was tattooed on their arm. Some who feel beaten down by the system in which they feel no hope in beginning to try to fight back when shoddy work has been performed or at the very least knowing shoddy work has been conducted. Some who are just like our family, bad luck has visited and didn't leave damn calling card.

I consider myself both lucky and cursed. At times, I wish I was ignorant in knowing what to request and what to expect. I never had a clue people don't request the Medical Examiner's reports. I never had a clue people accept everything at face value and don't ask for wrongs to righted. (eww... can I even use righted as a word?) I never had a clue about the infant mortality stats of this state until our family has now been included en mass.

In essence, our family is another number among the countless numbers of people who may have contributed or may not have contributed to the death of their infant. I, for one, don't want to be included in such a gray cesspool.

At the end of conversation, the kind woman asked me to write down my experience to present to the "Health Department Board." Since my situation seems to be quite unique in nature and well, I seemed like a person who could articulate my story better than she. Really? Unique? Wow! Basically, my situation is every person's worse nightmare, come true and yes, if feels quite unique to me..... I told her I would on one condition. "I wouldn't be messed with anymore. At this time, I'm now so disenchanted with the system, I don't trust it anymore. I'm now afraid. Afraid of what? I'm not sure. Afraid of all the possibilities happening that I never thought could happen." Basically what my friend said, "Man, you don't want a "Silkwood"event on your hands. You know, checking your rear-view mirror, questioning when someone is going to pop out of nowhere because you defied the system."

My friend nailed the situation on the head. Even though everything is complete, I'm afraid for another shoe to drop. Afraid to be included in yet, another set of stats in which I don't fit the "typical demographic." In the end, what is a "typical demographic?" Does it include you? Your sister, your brother, your best-friend? I'm trying to figure out the answer to this difficult question but yet, I'm so tired of the fight and I am not capable of fighting for myself or anyone else and please, don't ask me to do so.

Comments

[seattlereader]

Hello, Shanna. I've been following your blog for the last six months or so (I found your blog from a link off the Broadus's "Peanuts Gallery" site). And, I feel like I should identify myself in some way and let you know that I get A LOT from you, and there's just no way for you to know that unless I post a dorky comment like this. I never read the comments to your posts, so I'm guessing you get a lot of responses like the one I'm writing. Why respond today, after all those months of not saying a word? Why this post? Not sure - except for possibly two reasons 1) I just feel the need to let you know I think you're amazing. You are amazingly vulnerable. Amazingly articulate. Amazingly REAL. Amazingly insightful. Amazingly honest. Amazingly FUNNY. Amazingly beautiful (I know, the whole fat thing - I struggle with that too, but darnit - you are very pretty!). And 2) This post "feels" different from everything you've written since your son's death - there's a shift (if I can be bold enough to make an observation from afar) you've stepped out of something and are in a new "space." Anyway, it doesn't matter to you in the slightest what I think, I know, and I'm really not trying to make ANY comment about the content except to say that I just really need you to know that I appreciate you spending the time to share your life, your innermost thoughts, your daily shit (all the stuff we think but never say) and your heartache. I don't know why I follow you, really - I have had nothing like this tragic happen in my life. I don't have kids. But for some reason, you give me strength, even when you talk about feeling your weakest and in the depths of despair. I take a lot from you - just wanted you to know that, and that I look forward to following your journey as long as you're willing to share it.

[Alison]

You're pretty damn amazing, you know that?

[Sarah B.]

I think I understand what seattlereader is saying. I do have kids, so reading your journey has been facing my worst fears through you. But seeing you carry on and survive (even on the days when you feel like you aren't) proves to me that I can handle any of the smaller, more trivial things that stress me out during the day. You are amazing. Thank you for baring your sould for us. I'm sure you know there are a lot of out here who are pulling for you and loving you!

[Sarah B.]

Ummm, I meant soul. Sorry, no caffeine yet this morning.

[Shannon Kieta]

Shana..
Agreeing with the post above, but I do have kids and I do sympathise with everything you say, do and write. I am on every level with you, even if I have not experienced it. You know what makes you special? You return the favor's. You reply to the comments. Even if they are two simple words. That shows so much in a person. It shows that you are taking the time to read what we are actually writing. I speak for myself when I say that I care about how you feel. Eventhough we don't know one another, who cares, I know enough about you to know that uou have been through hell and I care. I am sure if the tables were turned, you would to the same. THAT is what a friendship consist of. Having each other's backs when we need one another, not expecting anything in return. Shannon

[layla]

yup- thats my girl.
MAKE them LISTEN.

i am going to have shirts made for you to wear that say that when you go talk to them. I'm telling you- the next stop is our legislative session.

MAKE them LISTEN.

[Susie]

Good for you.
I too have been reading for months and months but don't think I've ever commented because I never felt like anything I could ever say would mean much. But this time I wanted to say good for you. Many people admire your strength, I'm sure.

[Lindz]

Keep your head up girl. You should be damn proud of yourself for all of the steps that you have taken that shockingly and apparently many others don't. You are NOT a typical stat.

[Sara]

Ah, I know just what you mean. I'm in the club of parents of kids with behavioral problems. My son's teachers always seem surprised that I'm not on meth, am happily married to my son's father, didn't drink while pregnant...

[Cat]

You are such a fighter.

[BeachMama]

The saying, "For everything there is a purpose" is felt here in your words. Your new passion and drive for righting many wrongs that have occurred in your State is amazing. The sheer fact that you may help another family from going through what you went through by challenging the system and asking questions means you have come to a new place in your mourning. May Thalon be with you every step of the way and give you the strength that you need to see it through.

[Rafaella Kopper]

Hi Shana,
I'm following your blog for sometime now and I hope you get the answers that you are looking for!

p.s.: Sorry for the bad english. I'm from Brazil and I really like your blog!

[Aunt Becky]

I love you. You're a tough bitch and I love that. I wish I didn't have to know that you chew up nails and spit out tacks, but I do, and I'm proud to call you my friend.

xoxo

[Sarah R]

What a bunch of BULL SHIT!!!!!!!!!!!! I am pissed for you. How dare they try to "categorize" people.

You had nothing to do with Thalon's death. You are an amazing mother who loved her son more than anything, not some dumbass who didn't have a clue (I have heard of people leaving their babies alone in bathtubs and falling asleep drunk on their children--now THOSE people should be slapped).

I am so sorry, all I can say is give it all you've got! Most likely their jaws will drop because they won't be expecting someone who has all her shit together. Many hugs to you, Shana. WTF is wrong with that medical examiner dept?

[Amanda]

I love you!

[Angella]

I love how you are so strong in the midst of this. You are amazing, my friend.

[-R-]

Does the State Health Dept really call moms after their babies die to ask if they know what they did wrong??? Even if someone doesn't get all the prenatal care she could have or does something "wrong," calling that person just seems horribly mean.

I love and agree with all these other comments too.

[TUWABVB]

I have a vision of your face on a round peg and someone is trying to jam you into a square hole and you are biting them on the hand. You are amazing - and you inspired me today to question things a bit more - so thank you for that.

And please -give the OK Health Department the ultimate insult...move to Texas! :)

[Rach]

A good friend whose unborn son was diagnosed with a very grave heart defect was just over for a "play date". We were talking about how we don't buy the "Well, this or that only happens to 1% of the population", a phrase used to make us all feel better. Doesn't mean much when YOU are the 1%. Someone's gotta be, yes?

It BLOWS.

[Suze]

You make me feel so proud. You've been through so much and you're so willing to share. You're a good girl my friend.

[Virginia]

Why the hell are they calling you after you have lost your baby to blame you? What is wrong with them?

But you are tough as nails. I'm sorry this is why.

[Titanium]

Words are completely inadequate. I find my fingers sputtering with indignation and spinning a thousand thoughts into a web of emptiness. My heart is breaking for you, Shana.

[Jessica]

I suck, you rock, that pretty much sums it up....Know there is daily love being sent your way! I could use a pina coloda (without the wait staff life story) right about now:) Just wanted you to know that am here for you and love you bunches!

[Debby Pucci]

Wow, what a great post. You go girl. You are amazing.

[GingerB]

Shana dear, I too have been classed in with the not so good moms who caused their babies to be born early or small, and like you it frankly pisses me off. You get to keep looking at the whys and the hows all you want, because he is your son and this is your life and you need to come to the most peace you can about what happened, but you don't have to help anyone else study up on the situation. Your only obligation is to heal, period. Screw the little beaurocrats. We love you.

[Laura]

Oh my god. I know exactly what you mean by the hounding state questions but I never in a million years thought they could be that callous after a loss. My daughter had salmonella when she was two. For two weeks I fretted, cried and generally lost my mind as I watched my baby pass blood in every way imaginable while NOONE cared. Fast forward two weeks to the state getting the lab results FINALLY and everyone was up my grill - had we been to a church picnic, own chickens, blah, blah, blah. It took all my strength not to hurt someone. I have no idea how you have dealt with this.

You owe them nothing Shana. If it will help you to heal to give your story a voice then do. Otherwise screw them.

[Tracy]

You know, since we *are* leaders in the infant mortality department (and locking up women too! yay Oklahoma! we rock!), in a way it seems like a good idea for them to talk to parents and say "Oh, turns out you had a lot of fluffy bedding in there with Junior, and that might have been the problem," just so they know not to do that in the future. And yet, calling people and saying "Yeah, this is probably how you killed your baby" is just... so... wrong. Anyway, whatever you choose to do, it will be the right thing.

[Heather]

what an f-ed up system. and what is it about OK to have such high infant mortality?

not to get all political - but it is an aggravating thing with conservatives fighting health care reform and insisting that our system is best when in actuality our infant mortality rates lag behind Cuba's! the u.s. is 29th - tied with slovakia and poland.

[Zak]

God, OK is so weird sometimes.

Hugs to you, I wish they would just leave you alone.

[foundinidaho]

I think you meet the "typical demographic" for awesome. That's what I think.

Hang in there.

[Kristel]

Shana-na-na!
You, my friend, are anything but typical. You are extraordinary. Amazing. You are one of my favorite people (is that proper grammer? I think not) and I'm sorry you have to keep reliving your heartache and explaining the unexplainable over and over. Nobody deserves that... and you especially don't deserve that. I've never heard of such a phone call but I am so proud of you for returning the call, sharing your story and setting things right. As for sending them your story... it can be done in 25 quick and easy letters: http://gorillabuns.typepad.com

*hugs*!

PS... what do you think... Jordan for the win?

[Noelle]

Shana, I'm so impressed by what you've been able to accomplish while standing smack in the middle of your grief. You are totally right, you HAVE to fight the system when it's wrong. You have to stand up for yourself and be your own advocate. It's something I'm learning lately, as I battle the military health care system and you've inspired me even more.

Wishing you luck, and a little peace in the midst of all this.

[Michele]

Maybe your story can help them see how screwed up their system is. Maybe one day, parents wont have to fight to have reports amended because you will help them realize they need to amend their system so that no one else has to through that.

[Jen]

It's so sad that the public health authority seemed that it was trying to place the blame on you. Infant mortality is a terrible reality and as I understand it; still something of a medical mystery. Your family is unfortunately living out the effects of having received an enormous wack from the shitty luck stick.

It wasn't your fault. You did everything you could for Thalon. And you are still fighting for him. What an awesome person you are.

[noble pig]

I totally agree in fighting. I know this situation isn't AT ALL the same but I fought the system for three years to reverse a speeding ticket given by a crooked cop and even and an even lamer judge. No one had ever fought the system and after three years they reversed the decision. No one in that court could believe it. Why? Because it's hard. Hard to fight. It takes guts and a willingness to want to change things. It also feels good to win when you know you are right. Some wanted me to go further and prosecute the cop for perjury but then yeah, that's scary. Would he come after me...in the night? I know exactly how you feel.

[180]

Frankly, I'm fed up with having to fight with people because of their lack of accountability. And it really pisses me off that you had to do this on top of everything else, but I'm relieved that they have righted some of their wrongs. You are one strong lady!