Bombarded with Disgust

Have I ever mentioned the fact that I avoid the news? It's more-or-less a phobia of sorts I would say (if there is such a phobia...I have it). Bad news makes me ill. I'm not being sarcastic in the least...literally, it makes me ill. Not all bad news, though. ANY news/stories/blogs real or otherwise about children in pain -- abuse, neglect, lack of food, clothing, psychological, emotional, physical, sickness & cancer, accidents, purposeful acts of perverse intentions -- I'm talking the whole realm of suffering from child molestation to my child crying because he didn't want me to go to work. And so, I prefer to avoid the news, I can't bare to watch St. Jude telethons, I don't like to watch CSI when children are involved...especially Law & Order shows which seem to be centered around injustice to children. I just plain don't want to hear about it. And not because I don't care, because I do care, more than I can physically handle. Maybe more so now that I have a child of my own, but nonetheless, I will dwell on things that I have absolutely no control over under it makes me sick. And I dwell and I dwell and I dwell!

I'm sure you're wondering what brought me to this post tonight. Well, if you must know and I'm sure you do; I was reading a post from one of my favorite blogs Dooce. As I was reading comments, I happened to link across another womans blog {yep, I'm a blog hopper - I confess} called Becoming Sarah. I began reading her post called "Google, we have a problem" and like her, was completely appalled, disgusted, outraged...and again, physically ill! I will let you jump on over to her site if you want to know about it, but will not be discussing it on my blog. I also got a few emails today about child abuse. More often than not with the emails, once I realize what it is about, I try to close it out before I get to far into details.

I know they all say, if you don't pass this on then you obviously don't care about child abuse etc etc, but that is completely false. AND, if you want, I can pass it on without reading it if that makes everyone feel better. I don't mind doing my part as long as I don't have to know about anything. I know that ignoring what is going on in the world is not going to change it or even help it. Especially since becoming a Mama myself (and even before then to a lesser degree) I obviously have real issues with the subject and I would just prefer to avoid it if at all possible. Right or wrong I would rather spare myself the hours upon hours upon hours of dwelling, worrying, being literally sick and spend those hours being happy with my son. I want to enjoy his childhood and not be worrying about it every single second of my life. Until the world is a peaceful, loving world - then this is just the way it has to be for me to enjoy life.

Silly Sebastian

Today we spent the entire afternoon at my best friend's home with her 2 youngest kiddos. Sebastian fits right in between Ava, 3 and Kanon, 1. I love spending time with Sarah and her kids. Sebastian adores them all. As you can see from the pics above, he had an awesome time. My face still hurts from laughing so much. Ava is as beautiful as ever. She has the most beautiful long hair and I love her personality. She actually crawled up in my lap today and let me hug on her--which is a little out of character for her. (I'm basing it on the fact that she just loves spending time with her favorite Auntie ;) Cutie pie Kanon has really warmed up to his new Auntie, too. He has no problems dishing out the love for me.

The kids went outside and we had bubble wars. Ava thought she was in a contest for the hardest bubble blower. Kanon thought it was something to eat. Sebastian couldn't stop laughing. Sarah was catching & popping their bubbles and he would just hysterically. I thought he may pop a blood vessel laughing so hard. It was the most fun!!

I played with Sarah's camera some more. I love it! All these pics are from her camera -- taken by both of us. I've been editing them...as you can tell I seem to be stuck on the same techniques. I don't know why I'm drawn to that look right now, but I am! I had a great time. Our kiddos make the best little models.

Sarah has another little girl {well, she's not so little these days}, Ady. I'm excited for her to be out of school for the summer. It seems that I never get to see much of her. Sebastian & I will be going on a beach trip with Sarah & the kids which we are SUPER DUPER excited about. I'm excited to get to know Ady better and for the kids to have a nice relaxing beach vacation {with their crazy Mama's sticking in a camera in their face all day}. This will be the first time for Sebastian to see the ocean...it's going to be a great vacation!

Here's a slideshow of our day with our friends!

Gone But Not Forgotten: Brady Cunningham's Story

I'm not one to watch the news or keep up with the current events, mainly because I tend to dwell on the negative. Sometimes, to the point that I make myself sick...literally. It's just my nature. However, I am a complete activist in the same respect.

Today I learned that HB716 passed here in Missouri today. What is HB716? This bill allows for...well, actually requires...the testing of 5 additional lysosomal storage diseases during DHSS newborn screenings.

And why is this important? I'm glad you asked...
First of all, a bit of background about lysosomal storage disease copied straight from Wikipedia...

Lysosomal storage diseases (LSDs) (pronounced līsəˈsōməl ) are a group of approximately 40 rare inherited metabolic disorders that result from defects in lysosomal function[1]. Lysosomal storage diseases result when a specific organelle in the body's cells – the lysosome malfunctions.

The lysosome is commonly referred to as the cell’s recycling center because it processes unwanted material into substances that the cell can utilize. Lysosomes break down this unwanted matter via enzymes, highly specialized proteins essential for survival. Lysosomal disorders are triggered when a particular enzyme exists in too small an amount or is missing altogether. When this happens, substances accumulate in the cell. In other words, when the lysosome doesn’t function normally, excess products destined for breakdown and recycling are stored in the cell.

Lysosomal storage diseases affect mostly children and they often die at a young and unpredictable age, many within a few months or years of birth.

There are no cures for lysosomal storage diseases and treatment is mostly symptomatic, although bone marrow transplantation and enzyme replacement therapy (ERT) have been tried with some success.[3][4]. In addition, umbilical cord blood transplantation is being performed at specialized centers for a number of these diseases. In addition, substrate reduction therapy, a method used to decrease the accumulation of storage material, is currently being evaluated for some of these diseases. Furthermore, chaperone therapy, a technique used to stabilize the defective enzymes produced by patients, is being examined for certain of these disorders. The experimental technique of gene therapy may offer cures in the future[5]

OK, Now back to why this is important to me...

Recently in my hometown, an 11-month-old precious baby boy passed away as a result of a rare, unscreened genetic disorder. Brady Alan Cunningham was not diagnosed with Krabbe disease (CRAB'-ay), one of 40 known types of lysosomol storage diseases, until several months after his birth. Shortly after birth he began shaking a lot which was blamed on an immature nervous system. He began having other symptoms, such as stiffening his body as if in pain, profuse crying and refusing to eat, which his family could not ignore. This lead them to St. Louis' Childrens' Hospital where he was later diagnosed with Krabbe disease.

Krabbe disease is caused by mutations in the GALC gene, which causes a deficiency of an enzyme called galactosylceramidase. The buildup of unmetabolized lipids affects the growth of the nerve's protective myelin sheath (the covering that insulates many nerves) and causes severe degeneration of motor skills.

According to research from the National Institute of Neurological Disorders and Strokes, if the screening had been part of the normal newborn screening process, [Brady] could have received a bone marrow transplant or cord blood transfusion, which could have stopped the progression of the disease, possibly enabling him to have a normal life. However, since it took so long to diagnose the disease, doctor's were unable to treat [Brady's] condition and gave him a life expectancy of 13-months. ---from Daily Dunklin Democrat news story dated 04/09/09 http://www.dddnews.com/story/1529226.html

Brady died on April 6, 2009.

Although this may not be a comfort to his family right now, precious Baby Brady did not die in vain. Because of his family & friends' awareness & advocation, countless children may be able to live long happy lives as a result of the new implemented newborn screenings. I, for one, am truly thankful that this family had the wisdom and courage to fight to have this bill passed. HB716, forever named after little Brady, establishes the Brady Alan Cunningham Newborn Screening Act which adds certain lysosomal storage diseases to the list of required newborn screenings. Brady may be gone, but he will never be forgotten!

Krabbe disease effects 1 in every 100,000 births. Currently, the United States does not have a Universal Newborn Screening Program; therefore, there is an inequity of diseases screened at birth from state to state. To find out more about Krabbe disease and HB716, check out the links at the end of this post.

Please keep Brady's family & friends in your thoughts & prayers.

http://www.huntershope.org/

http://www.ninds.nih.gov/disorders/krabbe/krabbe.htm

http://www.house.mo.gov/content.aspx?info=/bills091/bills/HB716.htm

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Pics from the office...
I know everyone desires to know how I manage to make it through 10-hour days in an ~ 8'x8' cube...this is it. My cubby is crammed packed with pics of my adorable little guy. Actually I need to bring in some current pics, but I thought I would share some of my faves. Love love love the santa pics from '07. My very Bff took these - sarah - I'm sure I have mentioned her before (wink wink)! Also his first Easter & 1st bday. Hope you enjoyed a little peek into my cube away from home.

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my mind is blank. i have blogger's block. and i'm so tired that i can't even steal an idea from another blog. i have a headache which began sometime late saturday evening and is still going strong. my shoulders, arms, elbows and fingers ache - down to the bone. it hurts to type. it hurts to stare at this computer screen. my bff is not talking to me because she thinks i'm mad at her {guessing} or she's just too busy for me {2nd guessing}. sebastian won't go to sleep. he tried to poop but didn't make it so i had to clean poop out of the floor. my work day was too long {with that headache & aching arms}. my husband hasn't helped me do a single thing today. i am burning up and about to turn the a/c on. laundry is piled to the ceiling and my house is a disaster. am i not so depressing today?


but...


good news...


mckmama's stellan was released from boston's childrens hospital today and he gets to go home. finally! after 6+ weeks {i think}. that is the most amazing news. that puts all my mindless complaining to shame. congratulations mckfamily! stellan, you are an amazing fighter. i am blessed to get to know about you.

I Never Get Tired of Park Pics...Take 25

Well, actually, it's probably more like take 100 or something. Sebastian loves being outside and loves playing at the park. It's usually much more fun when we play with our friends, but Sebastian had a great time anyway. I never get tired of watching him. So, here's some more pics from our favorite place...the park. (My head is pounding, so just a shory post tonight.) Enjoy!

I'm a Sucker For...

Goofy posing bright-eyed, wide smiling curly headed

breathtaking

long-lashed

gorgeous nephews

This is Therron! My youngest "biological" nephew. He will be 4-years-old in August. He loves legos and drawing and watching Twilight (hmmmm wonder where he gets that). He spends most of his days at home with Papa when his Mommy is at school. He's finally talking in human language - I thought we may never understand him. He has beautiful, beautiful curly dirty blonde hair that his mother keeps cut off very very short because his daddy doesn't like it. (I'm all about the long locks. I don't care how "pretty" it is.) Therron is a major goofball and always makes me laugh with his silly dancing and "posing". He ♥'s milk, especially strawberry milk. He, as well as his two brothers, had their tonsils & adenoids removed AT THE SAME TIME!! He's always running around in his underwear as this seems to be the trend amoung all my nieces & nephews. As the last of three boys, my sister has really made him rotten. He is funny, rambunctious, serious and oh-so-adorable and I love him with all my heart as I do all my nieces and nephews whether "biologically" related or just adopted by me. It's a great day to be an Aunt! ♥♥♥

Youth Museum Photos

I took Sebastian to the local youth museum on Wednesday. There was a horde of preschoolers there from a local school. I had dressed him in bright red which was exactly what they were all wearing. Luckily, they didn't stay much longer once we arrived and then the place was completely dead. Sebastian pretty much had the run of the entire building. It made it wonderfully easy on me trying to keep up with him. He had such a great time. I don't think there was one thing that he didn't like. I had to persuade him to go from one exhibit/activity to the next because he would get completely absorbed. It was incredible as a Mama, watching his interest and enthusium. I'm always completely astounded in the way Sebastian views his world...his curiousity and awareness of everything around him, what motivates his mind and his responses to them. I'm like a kid in a candy store. I can simply sit back and watch him for hours & hours and never be bored. Children are the most exhilirating little people. If you haven't noticed, being a Mama is my absolute passion in life. There is nothing on Earth that even remotely compares to being a parent. I love the bond that I have with Sebastian.

Anyway...here are the pics from our rendevous at the museum.

I ♥ Friday's

TGIF!

I chat on MSN to by BFF Sarah practically every night. Believe me, I know it is every night because if I miss a night, I get my butt chewed {wink wink}. We always have very deep & meaningful talks {hehehe}, but for some reason, Friday's are always the best. I don't know if it is because we are getting pumped for the weekend, the sudden burst of adrenaline from working all week, or the fact that this is the only night that I can stay up 'til the buttcrack of dawn chatting to her without having to work the next morning, but whatever the reason, our conversations are always much more "colorful"

I always look forward to our Friday night chatting. Sarah is truly my soul mate. I mean that in the most innocent, non-romantic way. I sometimes think we share a brain. She is much more gutsy than I am and always manages to "say" the exact thing that I am thinking...whether I should be thinking it or not. We seem to be on the exact same page on all the important things in our life and complete opposites on all the things that don't matter---like I am a completely organized control freak with no patience & I never forget anything and she is a completely disorganized procrastinator who can't remember crap. I think that is why we get along so well and I can never stay mad at her & vice versa because we both would be completely empty without one another. So, thus, I say she is my soul mate!

Tonight she blogged about how much she loves me (here)!! It is a beautiful tribute and I totally have a huge head now ;)! Who doesn't love hearing about how wonderful they are?

Happy 1/2 Birthday, Sebastian!

Today my 6lb 15.2oz, 21.5" long bundle of baby joy is 2 & 1/2-years-old! Amazing! Time is just flying by. Seems like just yesterday, we were celebrating his first 1/2 birthday. He was a roly poly ball of baby fat. Chubby cheeks and fat legs - so much more squishier than he is now. He, of course, was sitting up very well at 6-months. About 2 weeks later had pulled himself up to standing in his crib. I remember that fondly. I was getting ready for work and he was sitting in his crib playing with toys, when I came back into the room, he was standing up with that grin that stretched from ear-to-ear. He was so proud of his new accomplishment. And, I would have been too, if it wasn't for the flood of tears. Standing up, walking around the furniture, crawling & then walking on his own followed very quickly thereafter. I miss those cuddly baby days.

Here's a little video montage of Sebastian at 6-months-old. Please ignore me in my jammies and "morning" hair and my VERY southern accent! It's quite annoying to hear myself...but here goes anyway. Advanced warning...apparently we were very excited about the bye-bye thing...hahaha

Make an on-line slide show at www.OneTrueMedia.com

OH, and how could I not add this picture. This was his 1 & 1/2 Birthday! I had put him down in his crib to sleep and after checking on him, he had put his sippy cup of ice water down his shirt. How precious is that?

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Just received a memo from myself..."Stop the dew or suffer the consequences!" I heard you loud and clear!!

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Daddy - Bastian' what are we having for dinner?
Sebastian - Popcorn
Daddy - I want something better than popcorn
Sebastian - 2 popcorns

(Practically) Wordless Wednesday

Sebastian & I enjoying the beautiful afternoon.

We also had a wonderful time today at the youth museum...

more pics from that at a later time!
Goodnight all!

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Wish you were here. we miss our sarah ava n kanon

Orange You Glad I Blogged Tonight?

Those of you who keep up with MckMama's blog probably already know that tomorrow is Stellan's surgery day. He is having the ablation done on his heart. This is very risky surgery, especially given the fact that little Stellan is only 5-months-old. Please please please keep this precious little guy in your thoughts & prayers. I am praying that everything is successful and he will finally get to go home to his family very very soon. WE LOVE YOU STELLAN!!

Also, tomorrow is WEAR ORANGE FOR STELLAN DAY!! So, grab your orange stuff and get it ready. Sebastian is already outfitted in his orange jammies so he'll be ready to start the day out right. TUESDAY IS GO ORANGE FOR STELLAN!!

Look what other O-R-A-N-G-E things we found...

Splendid Sunday with Sebastian

I had a W-O-N-D-E-R-F-U-L day with Sebastian. We played and talked and played all afternoon. He woke up from his nap in an amazingly good mood and there was no way I was wasting it. We have just been hangin' out in our jammies all day (well, I wore jammies, he wore undies). He has had a beautiful smile glued on his face all and of course, it's contagious, so I had one too. I love talking to him and trying to decipher his wierd language hahaha. He was sitting in the floor talking on one of many phones we have lying around here, he called Kim. "Kim what you doin'? OH! I got 2 dollars. What you doin'? I watchin' tv. I got 2 dollars. OH OK! Imma call Mamaw. Bye Kim!" So hilarious.

He's been on a "wipe-your-kiss-away" kick. He wants you to kiss him or him kiss you and then he wipes your kiss away. "I wipe Mama's kiss off!" But, in order for the game to go off correctly, you have to "get mad" that he wiped your kiss off--make a sad face and shout "oh, no, you wiped my kiss away"! Then he can have a hysterical fit laughing at you. I started "crying" today when he wiped my kiss away and he says "awww Mama...you crybaby!"

We also danced around the living room to music on Sirius Lithium. Apparently, he likes 90's grunge rock hahaha. We dusted living and picked up toys while we danced through the house. I had to tell him Mama's remix of the "This Litte Piggee went to the Market" about a dozen times then he had to tell me a dozen more. We made some tea and he had to drink some in a "Mama's glass" and we had to add ice to it like 10 times. He jumped on the couch, made a fort and jumped to me in the floor like a parachuter. I chased him through the house like a lion and he would squeal when I caught him. I love his laugh so much. He likes to play hide-and-seek. I hide and he comes to find me, but when he does he squeals and runs for his life lol! Once, he hid in the laundry basket. We sat in front of the big window and watched the dark clouds. I said "the sky is getting black". Sebastian said, "no Mama, it's bwue, not bwack, sky is not bwack." Who knew the sky was not black?