When he takes his first steps

Having a child with special needs is not only one of the most challenging and unexpected experiences of a parents life, it can also be one of the most rewarding. But oftentimes it's difficult to see the rewards, when you're sleep deprived because you are trying to sleep train a 2 year old with the mental capacity of a 9 month old. Or when you are exhausted from the many therapy sessions a week along with doctors appointments, paperwork filing, insurance calling, and schedule maintaining. Right there, I just described my past couple of months on the parenting side of my world. Not to mention the schedule change for my step-daughter Mena (we now have more time with her), which is fantastic! I am now in a position to assist her with figuring out ways to play with her little brother and maintain that sibling relationship.

This weekend was one of those few fantastic weekends.

This story starts with an early riser on a beautiful Saturday morning, that also happened to be St. Patrick's day! Breakfast included green crepes with whipped cream, green eggs and spam! Fantastic breakfast if I must say so myself. Then it was off to take Mena to dance class. Hubby did the honors since I was already exhausted come 11am from sleep training Seby (which has been going really well by the way, he'll sleep through the night 3 nights in a row then up at 2 am on the 4th night- so it's not as horrible as it used to be. But Saturday morning was one of those 2am wake up calls).

The afternoon consisted of watching movies, playing boardgames and cooking dinner. Which was a fantastic steak, corn on the cob and jasmine rice. Yummy!! After dinner Rob went outside and hunted for a 4 leaf clover, which as usual he found. This man has found more 4-leaf clovers in my time with him, than most people have seen in their lifetimes. I still have YET to find my own 4-leaf clover! Well anyway I figured our luck will start looking up since Rob found a clover on St. Patty's day of all days! Luck of the Irish, here we come!

Shortly after Ramena's 4th game of Rummy and before the 2nd game of checkers I received a phone call. It was Greyhound letting me know that the Kidwalk for Seby arrived and we have an hour to come pick it up before they close. Holy cow 3 days early!!! It wasn't due to arrive until Tuesday! (We were able to purchase the Kidwalk from KidsMobility.Org for $250 which included shipping) So off went Rob to Greyhound to pick it up before it goes missing.While Rob was gone Mena and I played a few rounds of Yahtzee, and she pretty much kicked my butt. I had no idea the probability of rolling Yahtzee was so high with a 6 year old. Definitely had to take an Advil from all the excitement. Also didn't know a 6 year old can yell YAHTZEE so loudly, I think my ears are still ringing :p

About 45mins later Rob comes home with the Kidwalk, and it was BLUE! Ok, that I'm chalking up to coincidence.Got to be... Right?

So Although by this time it's way past the kids bedtime, I thought well why don't we just put him in and see what he'll do. I grabbed his shoes and his weights and just put them on over his footie pj's that he was already wearing for bed. There was no assembly required and the DME guy in Colorado already preset the Kidwalk to his measurements. So in he went, and within seconds, Sebastian took his first steps towards Mommy.

He loves the wheels and began moving the wheels forward, then he realized he was stuck due to his feet, so he moved them, one at a time. I had goosebumps. "Did my kid really want to walk?" I thought to myself, in complete disbelief. "Oh my God was the therapist right? Is he going to walk by his 3rd birthday?" I couldn't believe what I was seeing. I grabbed the camera and took a small video of his first few steps thank goodness. We adjusted the height a few times before we found the perfect median and I gabbed his "security blanket" which is a lock of my old hair extensions. He then walked a WHOLE 8 STEPS without touching the wheels towards me. At that moment I fell to my knees and broke down crying. Mena was already in bed by this time and Rob was outside, so he missed his steps but there will be much more to come. I cried out all the frustration and fear I had for my kid. all the horrible prognosis' that almost every Dr told me about him, and somewhere in there I cried out any single doubt I had in my mind about my son. In that moment he walked. And in that moment he accomplished something greater than any person I have ever met was ever able to.

In that moment, he instilled Hope.

When Christmas is around the corner and you think WTF?

These past couple of months have been a lot busier and more challenging that I would have wanted it to be, but it could always be worse. I could be bored.

Since my last post Seby has had a MAJOR regression in feeding. He has developed a psychological aversion to the spoon. It used to be the bottle, but now we have switched him to a hard spout sippy so there's no aversion to the bottle because, well, there isn't a bottle anymore.

So what do you do when your kid regresses 6 months? You get another therapist. One that specializes in feeding, and unknowingly makes you feel REALLY incapable as a parent. We haven't "fixed" his regression, but he will take food off his nubby stick which is at least a zillion times better than not taking anything, but unfortunately we are now in a position where we have to get Pediasure from Canada on our own dollar because we ran out of our Wic Supply. So he may not be gaining any weight but damn it if I'm going to let him lose any. Needless to say that has put a serious cramp on our Christmas budget, but you gotta do what you gotta go. Maybe I'll wrap up this shipment and put a bow on it so that he has something to open even if he really has no clue what Christmas is about.

I did really great this year for the most part. I kept myself from bursting into tears in the Target Toy aisle. His birthday wasn't that successful, but eh, baby steps. It's hard when you have a 2 year old that can really only play with infant toys, and even most of them are too difficult for him. His leg tone has improved slightly since getting the OT Jumper, but his arm resistance is still really REALLY low. He can't hold his bottle up, or bear weight on his arms without screaming. But he CAN hold is sippy while laying down by himself. And that is an AMAZING milestone, we take 6 steps back and 1 step forward in a completely opposite direction. That's just how Seby rolls. So trying to find any Christmas presents for him that aren't just stuffed animals or that has a weight limit of 20lbs is extremely difficult, so he got a lot of shoes from us this year, to fit over his AFO's since we really need to be much more diligent about him wearing them and keeping them on, he's great about kicking them off.


Medical Updates:

• hearing aids working well, he occasionally pulls them out but it's not as often thanks to The Hearing Halo Headband

• Endocrinology - same meds, no change. Possibly may go on growth hormones in February, but we'll hit that obstacle when we get to it, and pray it won't turn out to be a 5 car pileup in the process.

• Kidney - Scheduling testing in February to make sure his 1 kidney is functioning properly and there's no reflux happening, which I'm pretty sure there isn't but better safe then sorry

• We are trying to get medicaid to pay for diapers since he's on disability via SS, and with all the Pediasure he's drinking he's going through diapers, but we'll see. I think the age is 3 for Medicaid to pay for it, but I'm hoping they'll bend the rules a little for us.

• Medical Equipment - Should arrive sometime in February, and his Dynovox Maestro talker should be here in January sometime. This is all contingent on if Medicaid approves them (cross your fingers) but lord knows this will open Seby's world like nothing I could ever give him.

I've been in nesting mode for some god forsaken reason. I've done more house cleaning in the past 24 hours than I have in the past 24 months. I hate the idea of starting a new year with the house in as much of a shamble as your life is, haha. I mean everyone knows my life is a mess, no need to make everyone else SEE it. The house looks great though, and it helps keep me calm by having something to do that is in no direct relation to the kids. Some people work out, I attack the bathtub with a steel brillo pad. Plus if we DO get all this medical equipment for Seby we needed large areas of space so that he can actually USE it. So it was necessary.

Things I'm excited for:

• Christmas to be over! And for the kids to hopefully be happy on that day if nothing else.
• My birthday cake! Just cuz I like cake!
• Seeing my family for Christmas dinner.
• Repaving the front walkway. (yeah I'm serious) It's for Seby's benefit, no bumps for his wheelchair
• Having a week long vacation with the hubby and kids, baking, cooking and watching TONS of TV.
• Seby more than likely sleeping through the night since he'll be so exhausted

On the topic of Sleep, we were not approved for a medical bed for Seby. In the state of GA it's impossible to get approved a Sleep Safe bed or a bed of that variety, so we had to take it into our own hands. Mena got a new princess bed thanks to my Dad for Christmas, and we took her old bed and Rob added plexiglass panels to it. It's pretty friggin awesome. He's been sleeping 8 hours straight, and although 2 year olds should be sleeping more than that, since he's not mobile, that's as much as he's gonna get. It's been amazing to get that much solid sleep at a time. Down right miraculous. Also, Seby has mastered 2 signs. More and All Done. It's so friggin cute watching him try to communicate, as long as he's not frustrated, then it's just, well, frustrating. Hurry up Dynovox!

On that note, it's about time for me to do dishes, and then take a nap with my boy.

Merry Christmas everyone, and Happy Holidays!
Remember just how lucky you are, life can always be worse.

~The Cooks

When Time Stands Still

There are days when I forget how old I am, but with the hustle and bustle of life I get reminded in the most unique of ways.

My reminder today consisted of pink hair.

So every couple of years or so, I get a wild hair up my butt and put red streaks in my hair. Nothing too crazy, usually fairly subtle and usually ends up looking awesome.

I tried a new dye last night since they discontinued the one that I am most comfortable with and needless to say the end result was not a subtle red, but so vibrant that it looks kind of, well, pink. Seby was EXTREMELY amused.

Now this would be all well and great, if we didn't have things coming up in court this year, or in process of trying to get respite care for Seby, doctor's appointments, maybe getting some part-time work to surround myself with other same minded adults, amongst a number of things that since I haven't finished my cup of coffee yet I don't remember.

At that moment I realized having pink hair will really throw a wrench in these things. At that moment I realized I'm not a teenager anymore and haven't been for years. I'm supposedly an adult. I'm not that young kid that can throw crazy colors in her hair and it "be OK". The timing just isn't right, right now. I have too much going on. But will there ever be a "good time" to have pink hair, or red, or blue? As the months go by I find myself having a hard time believing that.

I, like a number of moms I know that have children with special needs, have subconsciously begun describing my life in terms of pre-Seby and post-Seby. I have no idea when I started doing this, and was always so adamant that I wouldn't EVER think that way while I was pregnant. I planned on making this transition to motherhood as seamless as possible. I was going to be the career-mom, wife, and all around perfect parent. I gave myself such high expectations about what my life was going to be that I failed to have much of a back up plan. But who thinks about back up plans when they are pregnant? Usually the back up plan failed and HENCE the reason you're about to pop out a baby the size of a watermelon, right?

Not so subconsciously, but more realistically, I only plan 6 months out for Seby. This makes me less panicked. I don't know how or what he's going to be like a year from now, 5, or 10. Those thoughts are not only nerve wracking, but downright terrifying. I refuse to plan that far out with him. 6 months or less is best. The most amazing feeling of last week was realizing that after his Endocrinology follow up, he will not have any Doctor's appointments for the next 6-8 months, unless something major comes up. No more surgeries this year and probably next year, no more follow ups, no more scheduling. I haven't felt this lightweight in over a year. I haven't been on a real vacation in forever, but I am sure that this is equivalent to lounging on a pristine beach with a pina-colada in one hand and a bottle of suntan lotion in the other.

Now I MUST have all this time on my hands, right? Oh if only I was so lucky. Between feedings, diaper changes, therapies during the week, therapies at home, house cleaning, laundry, misc home renovations, filing, bill paying... I have LOADS of time on my hands to sit around and fantasize about being in Hawaii or some where equivalent with less volcanoes. Sometimes I wish I had a video camera recording a day in my life. It would probably run out of memory by noon. I really miss being able to sleep.

It's 10 AM and here I am, watching Seby watch TV while I type all of this out of my head and drink my 1st cup of coffee of the day from my pumpkin mug. I've already paid some bills, fed Seby, made coffee, rescheduled some personal appointments, planned the weekend vs. our budget and I'm behind schedule for the day.

It's really hard trying to have an identity crisis when you're so busy.

Maybe I can just say I'm supporting October's Breast Cancer Awareness Month, just so that I don't have to figure out when I can run to the beauty store for dye.
Save the Ta-Tas!" I'll say to people if they give me this weird look as I push my little guy that already looks different with his hearing aids and headband on.

I may not know how re-dying my hair is going to come out, or who exactly I am as a person (I may leave that monologue for another post). But I do know this:

Today I'm scheduling in a nap.

When the wonder in his eyes were well worth the pricetag

Today was a hard day.

It was hard for me that is.

Seby got his ears today! He finally received his hearing aids and really I could not be happier about the results. And I think neither can he. He has been so vocal since they were put in at 9am. I wonder what they feel like, what he hears like, what it felt like for him not hearing well. I don't think they bother him, he hasn't pulled them out yet, but he is screeching in really high pitches, then giggles. I already feel the headache coming on, but I welcome it.

This was hard for me. It was hard for me to have this very obvious piece of equipment become a part of my son's life, a very outward noticeable set of devices that proves just how different he is.

I know I shouldn't feel this way, it feels almost selfish. But I have come to the realization that sometimes your feelings are just that. Selfish. And really, you can't help it. Some days you feel guilty, and guilt is usually not a rational feeling, unless you've done something to warrant it. I haven't. Well, this may not be a rational feeling, nor justified, but it's still there, and it's definitely there to stay for at least a few days.

Not a day goes by that I don't ask myself, "Why me?". Those of you who have a child with special needs I'm sure understand. You know you've reached a level of acceptance when you still ask that question, but no longer expect an answer.

I'm there.

But now that Seby can hear, those will probably be questions I no longer ask out loud, but whisper in my heart almost like a daily prayer to help me get through the harder days, like when he won't eat. Or when he's extremely fussy and he can't tell me why. Or the days where we have a number of appointments to get to in a minimal amount of time and we look at each other with this familiar question in our eyes that scream " MOM!!! What were you THINKING?!?".

Today is the day that my son now tells the world that he's different, without speaking a single word. And my heart breaks for him, because the world can be a real dick to a kid that's different. But who knows, maybe he'll follow in the same footsteps of the day he was born when he came out butt first and the Dr says, "Oh here he comes! Telling the world to kiss his butt!"

Well...that's my boy.

When sometimes the best words, are unspoken

Seby was very mad at Mom and Dad last night.

Seby thought it would be a good idea to wake up at 2am to "talk" (which is really just very loud squawking with the long A sound - Aaaaaaaaaaaaaaaaaauuuuuuuuuuwwwwwwwwwwuuuuuhhhhh) to tell us that he wanted to play.

Of all the nights for him to wake up and squawk talk, last night was the worse night he could have picked.
Why? Because at 9am this morning Mommy had a super important meeting that she's been planning for, with her Boss's Boss's Boss's Boss and his Boss.

Yeah, you get the drift. I see this person twice a year, and it's for these bi-annual meetings, and I'm the presenter.

Son, I love you, very VERY much. I know this because other parents would have knocked you out with Benadryl, but nope, not us. Instead I wander into the living room with the baby monitor on so I can still hear you. Thanks hubby, for being a genius and pulling out the sofa bed last night just for this occurrence.

It's 6:45 AM and my alarm goes off, but really I've been awake for the past 3 hours listening to his attempts at singing about birds. He's really good I gotta say, he may have a career as a soprano in an opera. Now if only we can get him to remember he has feet...

I zombie walk back into our room and see him sitting up in his crib. That sight still scares me because I'm not used to it. It's only been 2 months since he has learned how to manipulate his muscles enough to learn how to sit up completely on his own, and I don't think that will ever get old.

I have this whole speech planed out in my head of what I'm gonna say to him too, because well I've had about 4 or so hours to think about it:

"Son, WHY can't you do this for the Speech Therapist when you see her twice a week?!?!! You say nothing, not a word, and they look at me as if I'm crazy when I tell them that you DO make sounds. They think you're mute, but I know you're not, you just save it for 2am every other Tuesday and Friday, which I gotta say at least you're consistent. So when you see Mrs. Vicki today, please say something, anything really, but Thank You is acceptable."

As I look down into his crib, Seby looks up at me and immediately puts his arms up for me to pick him up. My kid can't talk but he really knows how to play his Mother. It's 6:50AM and I have to be ready to leave in about 30 mins. I'm smart enough to know though, before I walk into our room, to make sure I have a bottle in my hand.

I have to prop the bottle on a blanket because he hasn't mastered the act of holding it yet. To be honest, he's not really anywhere close (we've been working on it though!).

I start getting ready in the bathroom and I noticed that he hasn't said a peep since I gave him his bottle. Ok, so I guess he fell back asleep, Rob is gonna be so happy... wait... SHIT! I forgot he's still vomiting his entire bottle. What the HELL was I THINKING?!?!

I run back into the bedroom and of course trip on 50 thousand things in the process. WHY does every single object or shoe, or dispenser you have ever owned get in your way when you are trying to get somewhere as fast as possible? I am really starting to believe that my hallway has a wormhole. I run in and notice him on his side. I pick him up to look at him since it was too dark and didn't even think about turning on the friggin light.

You see this is what happens when I'm on a couple of hours sleep.

He didn't throw up, thank God, and for a second he's confused because Wow Mom, that was super fast holy cow!!

I give him a hug and he looks down at the floor and starts kicking his legs. I notice his tiger is on the floor.

"Oh sweetie you dropped your tiger. I'm Sorry" I give him a kiss on his head and I put him back in his crib. I bend over and pick up his tiger.

"Here you go baby. Now take a nap". I turn around and finish getting ready for work.


"Aaaaaaaaaaaaaaaaaaaaaaauuuuuuuuuuwwwwwwwwwwuuuuuhhhhhhhhhh"


.....You're Welcome, Son.

I'm goin' down to South Park ....meet some friends of mine

Some people just won't get it. And it's about time I get used to it.

My son has had his diagnosis since December 17th 2010. It's been almost 3 months, and I have come to the realization that in the next 3 we will be conducting what I call "Damage Control." Sebastian is going to see a total of 5 different Doctors this month, have 4 different tests at Children's Healthcare of Atlanta Hospitals, and be permanently placed on Acid Reflux Medication, and if I had my way, Anti-Seizure meds too.

As of March 10th, 2011 - He has been diagnosed with intestinal malrotation, Cortical Dysplasia, a singular right kidney with a small non-functioning mass on the left side, Moderate Hearing loss both ears low pitch, severe hearing loss both hears high pitch and apraxia.

I have been asked, "Are these procedures necessary?" and "Why would you put your child through all that?" At first I'm usually stunned at the question, in an almost "Are you SERIOUSLY asking me that" kind of way – I'll blame a momentary lapse in judgment. After days of thought, I have come to the realization, that some people just don't understand what it's like having a child with special needs. I feel like I'm on a repeat of South Park. You know the episode where the token African-American boy keeps telling his friend, "You just don't get it, Stan", shakes his head and walks away? Yep, every single day.

A chromosomal abnormality, especially one like Emanuel Syndrome, affects every cell in their tiny little bodies. It is a Syndrome because there are a number of "symptoms" that a child with ES may have at birth or develop later on in life. Here is where as a parent, I need the statistical data and the maternal instincts to work together. Congenital Heart Defects, Hearing Loss, and Digestive/Intestinal issues are the top 3 to look for after a Neurological work-up and MRI. Once your child has received a diagnosis from a geneticist that their issue is due to a chromosomal abnormality, they usually have gotten the referral to the geneticist from a neurologist, so an MRI may have already been completed (depending on the circumstances of your child of course).

So I've been around the block a few times now, with Sebastian. He's had his PDA (Patent Ductus Arteriosis - congenital heart defect) fixed via Amplatzer device. He's had blood work, an ABR, an MRI, Upper GI, and a Renal Ultrasound.

This is not something that I woke up one day and said, "Oh I want my kid to have tons of tests done that are not necessary." These are tests that although may not be "necessary" to others, are NECESSARY to Sebastian. I had no idea that my child had such severe hearing loss, and never would I have thought about it if I did not combine data and maternal instinct to have him checked out. It's one of those tests where as a parent, you REALLY hope that you are not right, but I was. The same with the Upper-GI test. I knew something was up, and I researched the data. I was right. And I still feel horrible about it.

The single kidney thing though, really threw me for a loop.

I need to get over being upset, or stunned, that someone would question my parenting. Or question my knowledge about certain anomalies and procedures that involve my son. I need to accept the fact that there will be friends, who will no longer be friends, because you spend most of your time defending your son than you do talking about whatever interests you both share. I need to begin evolving into the mother that always has a response for something someone may question about their child.

Let’s start with this:

Q. “Is that Doctor really necessary, or is it just a doctor you want?”

A: ……


Yep still no idea what to say… What would YOU say?

So I have an affinity for my son's shoes....

So I've been asked lately, "Why did you decide to take up blogging again?", "Why did you pick this title?", and "How is your son today?”

I'm glad that people care enough about my son to read his caringbridge page, and call me to ask if there is anything that they can do. I am usually completely stunned and blank when they ask, but just knowing that if I need to pick up the phone and ask for something super random, makes me very appreciative and emotional – which lately has not been rare!

I decided to start writing again for a few reasons. One of which is to keep my sanity. There is something so fluid about creating a conscious thought in your mind and then putting it on paper - or in this case, the internet. If something I say can resonate with at least one person, then I know that I'm not crazy. Yeah, it sounds a little vain, but I'm pretty confident to know that once I fill this blog up to the brim with my family's stories and trials, someone out there will really believe that I'm not nuts, and it will make all these keystrokes worth breaking a nail for.

Another reason I decided to pick up a blog again is because I want to help express my son's thoughts where words for him is really non sequitur.

What do you mean by that Em? Well, my son can't talk, and he may never be able to. But I refuse to put a medical label on my son that states that he is mentally retarded, when as a parent you know what your kid is saying. The IQ test that is used for children/ adults with certain chromosomal abnormalities or mental disabilities is written with the intention that the child/adult can speak. Well what if your child has a chromosomal abnormality like Emanuel Syndrome where 90% of them are non-verbal? I am going to let a test that would frustrate both the child and parents, define my child's mental capacity? I'm just not that kind of Mom. I think this would be a perfect outlet to tell the world what he’s “saying” with my help by using the one tool that he can’t: Words. Maybe one day he'll be able to read this blog and say "Wow, my mom totally knows me, even at 18 months old."

Why the title? In this blog, you will see just how resilient he is. You will see how he overcomes so many obstacles in his little life, and how wonderful this miracle is.

A rant about healthcare and a kid with special needs

This may be the beginning of a very long rant, and maybe only those with special needs children can understand where I'm coming from, but I just don't get why we have to jump through flaming hoops of death just to get our child NEED based aid.

According to SSI/ disability/Medicaid I make $500 more over the poverty line, and I have 1 car too many. (We have 2, one is mine and one is Rob's) Because of this my child cannot have Medicaid that would actually COVER the cost of all these specialists he has to see. Mind you they did not ask me where my money goes to each month, or copies of the medical bills, or really disclose anything other than my salary range. They just deemed me as ineligible solely due to what my salary is.

Yet a teenage mother who does drugs and yet find themselves to be completely poor can get Food Stamps, go on Welfare, and suck the life out of the system (mind you they also get the luxury of having a completely normal child, go figure!). I actually for a moment contemplated quitting my job so that my son can get need based aid because, well, he NEEDS it.

I'm sorry but unless you are a millionaire you cannot afford a child with special needs out of pocket. You NEED health insurance, in some instances YOU NEED Medicaid, and you NEED someone who knows the system that can help you get it. In 2010 adding up ALL of Seby's medical bills, including his heart cath., dr's appts, medications, sedations, lab work, and equipment exceeded over $150,000 (From September through December).

I was told today that my child is my responsibility and NOT the states. I've been told today that I should have been prepared both emotionally and financially to handle the possibility of having a child with special needs.

How? I went to every single OBGYN appt, and everything was "normal". I had every test I could imagine that wouldn't harm the baby or me and all the results came out fine. Even his kidneys (which this is still hilarious to me) were within normal range!

Really? You're going to make me feel like a bad parent, because I had no idea that I had an 11;22 balanced translocation in my human genome and therefore produced an offspring that would never be able to fend for himself in this inhumane world?

So then every person should have at least 1.2 million dollars in their bank account to pay out of pocket for the possibility of having a child with special needs. Because that's how much it costs, out of pocket, with no insurance. I am immensely positive that I have some ES Moms that can top that!

My child has every right to have the same care that your child does. Yes, my child has to see a specialist for any possible little thing, but wouldn't yours if your child fell out of a tree and broke his arm, or God forbid, his neck? Wouldn't you want to make sure that your child has the BEST possible care that you could provide for him?

How would you feel if the care you can provide for your child was completely up to the insurance company? What if the insurance company said, "Oh well, I know that this (insert whatever medical thing here) can save your child's life, but we can't pay for that and you can't afford it out of pocket so you might as well say goodbye now."

Think about it, FEEL it, and TELL ME how that would make YOU feel.

I truly believe that this world is not ready for handicapped issues, people, or anything relating to the word handicapped, and I was proven right today. Those that are so completely insensitive and naive to think that the cost of having a child with special needs vs. the cost of having a "normal developing" child are equal, seriously needs to read a mother frikkin book, because they are completely ignorant.

I am not asking my child to be treated any differently than any other, but if my child needs to be seen by a certain Dr. there should be NO REASON, whether financial or not, that my child is unable to be seen.

Yes, my son has been turned away from other practices because "they don't take my insurance." Or they don't "take THAT form of Medicaid", and I am still LIVID about it, can't you tell? (But at least my hubby tore them a new one before we walked out of the office) I was naive enough to think that just because I had work insurance and I was paying $200 a paycheck for it that my son would be covered %100. It doesn’t. Not when you have a child with Special Needs. It doesn’t matter what insurance you have or what condition your child has. It's not right for the insurance companies to jack up the price of services (Lab work 7k? WTF!) nor is it fair to them to have to pay hundreds of thousands of dollars in malpractice insurance, but it's done anyway. So I'm sorry if you think that I am an unfit parent because I can't afford a 40k heart catheterization, but at least I'm doing something about it, all you're doing is judging.

Yes, I am the parent that will probably pitch a fit if someone is blocking the handicapped sidewalk ramp, because the other person who has NO IDEA what I'm going through is being an inconsiderate SOB and my son’s special chair weighs a ton.

Yes, I am the parent that will DEMAND to be seen at a Dr's office from here on out because now I know that it is my son's GOD GIVEN RIGHT to be seen, and it is well within his rights as a US citizen to have the state pay for that super-special-one-of-a-kind Dr. because the US has decided that raising the cost of a simple blood test will help our economy (How, I have no friggin idea, I’m not an Ecom major - just a really angry Mom). It is not my son's fault that he was born this way, and it is not my fault as a tax payer that I need to pay millions of dollars in medical bills because as some people put it "I should have known better than to not be prepared for the cost of a child with special needs." I pay my Taxes. I Pay Medicaid Taxes. My son should have the right to receive Medicaid Benefits.

Screw you and your perceptions. My Son is my gift from the universe, and as that gift it is my obligation to take care of him, by whatever means possible even if that means getting government granted need based aid.

*bows*

and off my soapbox I go... I feel better...