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.

Today I feel angry

Today I feel angry.

I feel angry for my son, because, well he can't feel anger. He doesn't know what anger is, and he may never know.

I feel angry that this happened to my son, and there's nothing I can do about it.
I feel angry that my son has to have test, after test, after test done to his poor little body, just to rule out possible complications on a long list of abnormal, environmental and congenital defects.

His poor little body has been through hell and back, and yet I see others whose children have had it worse. So who am I to complain?

I'm pissed. But not knowing who or what to be pissed at can make your day go by very very slowly and raise your blood pressure.

Am I pissed at myself for making my son sick? Am I pissed at Emanuel Syndrome for latching it's hell onto my child? Am I pissed at God, for giving me the beautiful yet extremely fragile little boy?

I don't know what or who I'm angry at, but I am furious.

I am angry that my son will never get married. And damnit NO, I am not being a pessimist. It is what it is. If I'm lucky my child will reach an equivalent emotional level as that of what, a 7 year old? Maybe? 7 year olds don't think about procreating. At 7 years old I was a wallflower afraid to talk to any boy because they all had cooties! I am tired of people telling me that there are all these advances in medicine so who knows what a few years from now may hold.

Really? Seriously? So you're telling me in the next few years there will be a cure for mental retardation and that my son will wake up completely normal. Wow, writing that makes ME sound like an idiot, and I am an extremely intelligent person. So imagine how that makes YOU sound.

If there isn't a cure for Cancer, Aids, Cerebral Palsy, Alzheimer's and many other diseases, syndromes, and deficiencies, what in the world would make you think that there would be a cure for a chromosomal abnormality that has about 200 documented cases.

I am angry that of all the people in all the world, my son, my only biological child, that I begged God for, and prayed for, and wanted and love more than anything on this planet (next to my husband) is the one that gets to live his life with Emanuel Syndrome.

I am angry that I will never know WHY. And I feel guilty that I am even asking for it.


Well... At least I'm not in denial....