Welcome!

This blog was inspired by 31 for 21 & is about my wonderful family.

"As a mother, my job is to take care of what is possible & trust God with the impossible." ~Ruth Bell Graham

"Never look down on someone, unless you're helping them up!"

Wednesday, August 31, 2011

'SCHOOL'

     Well, Troy went to his first day of 'school' yesterday.  He's going to a speech therapy class one hour a week.  I wish I could say how impressed I was, but that's not the case.  I think that perhaps I had my expectations too high.  We went in there thinking that there would be other kids with DS there.  There was one little T21 angel there, but she didn't speak English...as a matter of fact, none of the other children did either.  They did some singing & circle time in the beginning.  The therapist tried teaching them the month, the date, & the day.  In my opinion, that's a tad advanced for Troy.  We're trying to get him to TALK, not to learn the date just yet.  Then she took each child individually for about 10 minutes.  She gave Troy some flash cards with different textures & had him feel them, then she gave him a book & repeated the same thing.  That was it, her session was over.  Then we went across the hall, where another therapist was there with sounds playing on a C.D. player.  She'd say what they were after he heard them.  Finally, she had him feel more textures.  He did say noodle & paper for the first time, though.  After that, we went into the classroom, where he was offered a snack...of course he didn't want it....so he colored & did some macaroni art.  That was it, therapy was over.  I suppose that I have to give it more time, but I really don't know if I want to go back.  Not because I'm disappointed in the therapy class, but because of the way the other children was behaving.  Two little boys fought the entire time....PHYSICAL fighting, & no one did anything about it.  The other little boy was running around screaming, which terrified Troy.  I don't want Troy to think this behavior is acceptable!  Phew, I left there thanking God that my kids know better & with a HUGE headache.  This is why I want Troy to have a therapist that works strictly with kids with DS.  I think that I may keep searching, surely someone around here will do one on one therapy with him.  :(
     As you may know, Troy is in a Cute Kid Contest.  Right now, he's in first place!  He's holding on to that top spot by only 22 votes, so please go vote if you haven't already!  Just go to my fb profile page & follow the directions on the link that I posted.  I was informed this morning that they've extended the contest to Sept. 5th, so we have a little more time to recruit some votes!  GO TROY!  I'm not doing this to win anything, as a matter of fact, I don't think we 'win' anything.  I just want my point across, that people with DS are BEAUTIFUL & that their extra chromosome doesn't take away from them, it adds to their beauty & their character.  If each one of my fb friends were to vote, he'd be sure to win!
     I have been kind of upset here of late...too much on my plate right now.  But my dear friend helped me out of my 'slump' this morning...thank you, Stephanie!  I've come to realize that I can't control everything, though I wish I could.  But stooping to the level of others isn't going to solve anything.  Even though I do everything I can to help others, doesn't mean they're going to return the favor & I shouldn't expect them to.  As a Christian, I am supposed to do for others without expecting anything in return.  Therefore, I apologize for my negative behavior.  "I want to be remembered as the girl who always smiles...Even when her own heart is broken...And the one who could always brighten up your day...Even if she couldn't brighten her own...And the girl who forgives and forgets...Even if they shattered her mask & broke her heart... "

Monday, August 29, 2011

Just an update!

     PHEW!  What a weekend!  I'm sad that Mack had to go back to work & that Chancey had to go back to school, but boy, I'm glad it's over!  We had quite an eventful weekend, to say the least!  With all of Troy's boo-boos & the drama created by a jealous, immature kid at Chancey's school, I'm exhausted!
     At church yesterday, the lady that does the Joy Ministry (for special needs kids) came up to me & invited us to a dinner on the 17th for parents of kids with special needs.  We've been wanting to allow Troy to go to the Joy Ministry, but I'm a little hesitant with his heart condition.  I also want to help out in the Joy Ministry, but I'm afraid that Troy will cling to me & we'll be more of a hinder than a help.  But I am really thinking that I want to at least give it a try.  I just LOVE my church family!
     Troy is just growing & amazing us so much each day!  He starts school this week!  He'll go an hour & 15 minutes a day, once a week.  I can't wait, but it's hard to see him growing up!  Next thing you know, he'll be a freshman in high school, like someone else I know...CHANCEY!  Speaking of Chancey, I am so proud of how mature he's being about this whole 'bully' situation.  The boy is mad at Chancey for talking to his girlfriend, so he's threatening him.  Oh, I'm so ticked off about the entire situation...this boy is a junior & should not be so insecure.  Chancey doesn't even like the girl, only as a friend.  It's just all silly & sad that I have to bother the principal about such petty nonsense...& it looks like I'll have to get the police involved as well.  (SIGH)
     My Troy is in a Cute Kid Contest on facebook.  If you could, please take a few seconds to vote for him.  All you have to do is go to facebook & search for MLT Photography, go to their page, & 'Like' it.  Scroll down until you see the post about the Cute Kid Contest, click on it.  Then find Troy's picture...he has on a blue shirt & he's holding a football, then 'Like' the picture.  That's it!  Currently, he's 27 votes out of 1st place, & 6 votes out of 2nd place....he's standing firm at 3rd place.  GO TROY!  My mission is to show everyone that people with DS are beautiful, not a burden or a curse.  I didn't enter him to say that I have the cutest kid ever (which in my eyes, my kids are the cutest), but to prove a point.  That people with DS are perfect just the way they are, that extra chromosome has a purpose, to make them extra cute!  So if you could, please just vote for him...a vote for Troy is a vote for every person that has been blessed with something extra & the people that love them! 

Monday, August 22, 2011

Would you say something or let it be?

     My oldest son, Chancey, has always said that he was going to be in the healthcare industry, even before he started Kindergarten.  His goal was to be a surgeon, but now he wants to be a RN.  I couldn't be prouder of his choice!  In order to prepare for college, & for his career, he's taking a few healthcare classes in high school.  He goes off campus via shuttle bus, to a Career Academy for 2 hours each day to attend these classes.  He advised us that the lady who would teach him the first 2 weeks wouldn't be his permanent teacher.  I thought that was odd, but okay.  Last week, he sent me a text while on the bus back to his high school.  His text said that this 'teacher' used the "R" word incorrectly, out of context.  I was furious!  Then he told me that she said, "Don't smoke pot or use drugs unless you want a "R" baby."  That just added fuel to the fire!  The next day, Chancey had to do research on a medical condition & do a 3 minute talk about it.  Well, guess what he chose (so proud of him)...Down syndrome!  After his presentation, the 'teacher' said, "Well, my niece has Down syndrome & we didn't know until she was 5...don't know how she caught it."  ~Um, hello, lady...were you NOT listening?  Down syndrome is present at birth, you can't "catch" it.~  Chancey told her that & tried explaining that to her, but he says she wouldn't listen to him.  He tried explaining that perhaps her niece has the mosaic type instead of trisomy 21.  She wouldn't listen.  I just can't believe that someone like this is teaching!  I told him that I was going to find out how to email this lady (can't locate her at the Academy because she's a temp) & kindly explain a few things to her.  He tells me that I can't because Friday was her last day there....thank the Lord!  Even so, I feel like the Academy needs to know that the person they're employing to teach our kids has no clue....instead of teaching them, she's giving them incorrect garbage.  I don't want to start a a big fight, but I feel like something needs to be done.  Not just because my son has Down syndrome, but because Chancey & the other kids deserve to be taught correctly the first time...someone shouldn't have to go back & correct someone else's mistakes.  She paid to go to college for a higher education, she should know what she's doing & she's being paid to teach these impressionable teenagers...paid to teach them not incorrectly inform them.  Some of these teens may not know what Down syndrome is or really know the facts about it & she's telling them you can "catch" it?!  What do you think...would you say something or just let it be?

"The world is a dangerous place, not because of those who do evil, but because of those who look on and do nothing."  ~Einstein

Tuesday, August 9, 2011

Take a stand!

     As I am sure you all know, the movie The Change Up starring Ryan Reynolds & Jason Bateman, has a scene that has the DS community flustered.  Here's what happens, to the best of my knowledge:  Reynolds sees Bateman's twins & says "why are they not talking yet...are they retarded?"  Then goes on to say, "this one looks a little Downsy."  I was completely appalled when I heard about this.  Anyway, one person created an event that is titled "Boycott the movie The Change Up" & of course I joined it.  I read the comments & was frustrated at some of the comments by some people.  First of all, this is an event, you either agree to boycott the movie by not paying your hard earned money to see a discriminatory, derogatory film by clicking "I'm attending" or you click "maybe" or you click "no", it's that simple.  Some people are writing horrible things on the event's page, which is just adding fuel to the fire & making themselves look ignorant.  One person said that we shouldn't be allowing our kids to watch R rated movies & that if the people with DS are offended, they should be the ones speaking up...one said that "next you'll be boycotting Snow White because Dopey is a Downs & stupid."  What?  My son is only 2 & a half, I will do everything in my power to shield him from this type of ignorance.  I know that he'll be all grown up one day & he'll have to defend himself, but until that day comes, it's MY JOB to defend him & take a stand for him & all of the other people that I love with DS or who have kids with DS.  As the mother of a child with DS, I am offended.  No one has the right to judge my son, look down upon him, or make fun of him.  God made him the way he is for a reason, & He's the one that will judge him & will judge us all.  If I don't take a stand for my son, who will?  Who will know that the "R" word is offensive & that the term "Downsy" is inappropriate?  I don't address someone that I believe is uneducated & misinformed as "Ignorant", so my son or anyone with DS doesn't deserve to be addressed as a "Downsy."  He was born with an extra chromosome, that's it.  Just a little something extra, not something missing!  Yes, he has some delays.  But he's also endured more in his 2 & a half years than most people endure in a lifetime.  You go through all of what he has & see if you aren't delayed a little.  But that doesn't give anyone the right to label him.  He walks, talks, shows more love than I've ever seen.  He's happy, intelligent, has likes & dislikes just like everyone else....it just took him a few more months to reach his milestones, so what?  Does that make him stupid?  Nope, I think it makes him brilliant for overcoming each & every obstacle to achieve his goals & milestones! 
     Second of all, if you are that ignorant, you need to be educated on DS, respect, & discrimination.  If this was a Caucasian couple that had a African-American twins & the guy says, "this one looks like a n*****," the African-American people would be upset, & rightly so, just as I am.  It's wrong to discriminate, PERIOD.  All I can do is try to educate the ignorant & stand up for what I believe in.  In the words of Martin Luther King, Jr:  "Let us not wallow in the valley of despair, I say to you today, my friends.  And so even though we face the difficulties of today and tomorrow, I still have a dream. It is a dream deeply rooted in the American dream.  I have a dream that one day this nation will rise up and live out the true meaning of its creed: We hold these truths to be self-evident, that all men are created equal...I have a dream today!  I have a dream that one day every valley shall be exalted, and every hill and mountain shall be made low, the rough places will be made plain, and the crooked places will be made straight; and the glory of the Lord shall be revealed and all flesh shall see it together."  That too, is my dream.  For my kids to be treated equally by each & every one.
     On another note, I am reminded of a conversation that my husband & I had on the way home from the gym a few weeks ago.  He was telling me that he heard on the radio, on the way to work, a snippet from Ryan Reynold's interview on The Tonight Show.  Ryan told Jay Leno, "Atlanta was trying to kill me....no offense to Atlanta, it's a fantastic place, but it really wants my blood."  While he was here filming The Change Up, his trailer caught fire, his replacement trailer flooded, his hotel room flooded, his dog became ill, his divorce process began, & he broke his pinky finger.  Well, Ryan, I'd say that sounds a lot like KARMA to me!
     I realize that this movie is now out in theaters & the scene can not be deleted...but they can remove that scene before it hits video.  I will not pay to see it, will not see it if it's free, or if someone paid me to.  I'm not going to pay these people's salary to demean my son & the others that I love.  That's one more thing you experience when you have a child with DS, your DS community becomes your family, too.  I've met some AWESOME people, that I never would've had the pleasure knowing, because of Troy's something extra.  So, please, join me in saying that you'll take a stand by NOT watching this movie.  Please don't let your teenagers or kids see this movie, either.  When we allow them to watch movies like this, or even turn a blind eye, we're promoting this type of behavior.  You wouldn't believe how many of Chancey's peers use the "R" word to describe something they view as dumb & how many of them think someone with DS is contagious or freakish.  If we educate ourselves & our children, our future will be so much brighter & we can rid the world of these awful stereotypes.  Help me educate the ignorant & help change the lives of every one with a "diff"ability.  You can also take the pledge to never use the "R" word at www.r-word.org

Monday, August 8, 2011

Freshman!

     My baby began his journey in high school today.  It was quite eventful to say the least & needless to say, I'm not pleased one bit in his new school!  First of all, they had orientation last Thursday so the freshmen wouldn't be totally lost on the first day, BUT his homeroom teacher/advisor wasn't there!  Why is that so bad, you ask?!  Well, he has a class during 1st & 2nd period that's off campus & we had no clue where he needed to go & when....THEREFORE, he missed the shuttle bus there.  So he spent the entire 2 hours in the library!  Oh, I was fuming...I emailed that teacher & the principal!  Then he wanted to buy a locker but the only time you could buy one was during lunch & that's only 15-20 minutes long...so he wasn't able to buy one!  It's important for him to get a locker because he has to have separate binders for each class, the binders alone fill his backpack up totally, without any textbooks.  They don't have enough lockers for each student, so I'm hoping that he'll be able to get one tomorrow.  He brings home a ton of "homework" (papers for me to sign) for me to do.  As I read each & every sheet, I notice that his teachers say that you're not allowed to go to the restroom during class.  You're allowed 3 bathroom trips per semester.  Um, hello?  When you gotta go, you gotta go, regardless of the time or where you are!  They advise you to go between classes...uh, how?  You have all of 5 minutes to get from class to class.  It's ridiculous!  Now I do understand that some students will go to the bathroom just to skip class, but to me it's just wrong to make a child hold it.  But on a better note, he said that the girls were complimenting him on his physique....we've been working out 5 to 6 days a week the entire summer & he's looking buff!  :)  He still misses his old school, but maybe he'll make some new friends this year & he'll like it better!  As soon as he got home, his Granny called him to check on his first day as a freshman & his aunt texted him....that makes me happy to know that he's loved!  That's just awesome!

Friday, August 5, 2011

Thank you, Lord

Everyday be thankful for what you have & who you are!
Even though or breakfast table never looks like the picture in magazines & the menu is at times unbalanced...thank you, Lord, for the food we have.  There are many who are hungry.
Even though I clutch my blanket & growl when the alarm clock rings...thank you, Lord, that I can hear.  There are many who are deaf.
Even though I keep my eyes closed against the morning light as long as possible...thank you, Lord, that I can see.  There are many who are blind.
Even though I huddle in my bed & put off rising...thank you, Lord, that I have the strength to rise.  There are many who are bedridden.
Even though the first hour of my day is hectic, when the socks are lost, toast is burned, tempers are short, & my children are so grumpy...thank you, Lord, for my family.  There are many who are lonely.
Even though my husband works a lot of hours & many weekends...thank you, Lord, that he has a job.  There are many who are unemployed.
In every situation that life brings, keep this verse in your mind:  "I will bless the Lord at ALL times:  his praise shall continually be in my mouth."  ~Psalm 34:1

Wednesday, August 3, 2011

I was not "prepared" for this!

     As most of you know, Troy was diagnosed with Down syndrome when I was in my first trimester, so we had plenty of time to "prepare."  However, I was not "prepared" for this!  Sure, I knew what Down syndrome was, kind of.  Once I researched it, I became overwhelmed, as I'm sure most people do.  The material I was reading was just a generalization.  No one really knows what any one is capable of doing or becoming.  That was my mind set throughout my pregnancy, after my "mourning period," which lasted a few days.  I gave my worries to the Lord & asked Him for guidance, for knowledge, patience, & understanding.  Once my Troy was diagnosed with complete av canal defect just weeks after we received the DS diagnosis, I was concerned, but I knew that my God was not going to give me this sweet boy after a decade of trying to conceive just to take him away.  I put all of my trust in God & knew that he'd give me the perfect child for me, Mack, & Chancey.  Once I looked at Troy, I could see that he was just that, perfect, impeccable, no one could compare.  God brought us through one hurdle, he was born breathing & he was able to breath without any support.  Then God guided the surgeon's hand throughout his first open heart surgery & wrapped his loving arms around Troy, me, Mack, & Chancey during that stressful time.  The surgery went so much better than expected!  He was able to come home just 9 days after his OHS.  Troy became fussy & started vomiting one day, almost 2 months to the day after his OHS.  I just thought he was teething until he kept waking up after he went to bed...he would scream like he was in pain.  Then the vomiting got worse so we called his doctors.  Mack called the cardiologist, I called the pediatrician.  The cardiologist advised us to give him a bolus of Lasix (which means an extra dose) & if he's not better in the morning to call & come in.  But the pediatrician advised me to call 911.  We figured the cardiologist knew best, so I gave him the Lasix.  Moments later, he was vomiting it up.  His breathing looked labored, so we rushed him to Egleston.  We got to the ER at 1 a.m., Troy crashed & they called code blue at around 6 a.m.  Troy had to be put on life support.  Later that day, life support wasn't keeping him oxygenated, so they put him on an oscillator.  Finally, he was stable enough for emergency OHS...but it was too late in the day, so he was scheduled for 1st thing the next morning.  We were told that he had a severe tear in his mitral valve.  We once again handed our baby over to the surgeon to fix our son.  I prayed continuously the entire time.  The surgeon came up to us after the surgery.  Once I saw him, my heart sank.  I looked at my husband & said "this isn't good."  Sure enough, it wasn't.  The surgeon told us that Troy had infective endocarditis so bad that his mitral & tricuspid valves were just rotten.  He said that he tried to repair them the best he could, but there wasn't enough tissue, since he had to salvage tissue during his last surgery to separate the valves (they were fused together at birth).  He told us that he didn't expect Troy to ever wake up.  I was completely crushed.  I ran out of the waiting room into a private room down the hall.  I begged God to heal my son & prove that surgeon wrong.  Hours later, we were told that our son could possibly have MRSA, so we had to take contact precautions in order to contain the infection.  All of the cultures came back negative, but we still had to use the precautions.  Troy was fighting & God was showing off!  He fought to come back to us & he did!  He was taken off the ventilator & was breathing on his own.  He was given a PICC line & was getting 3 different antibiotics around the clock to get rid of the infection.  He came home 9 days later with the PICC line in his arm to receive the anitbiotics for 6 more weeks.  He went in for a follow up echo & the cardiologist was floored....Troy's heart was regenerating tissue & the holes were closing up!  Months later, all of the holes where the tissue was rotten, were sealed up!  Once again, God was fast at work!  Troy was thriving, hitting milestones.  We couldn't be more happy.  His first tooth came in, his birthday came & went.  He started crawling, talking, all the things he should be doing.  Then his heart got worse.  He went into heart failure again in December & had to have an emergency valvuloplasty of his tricuspid valve.  Again, we prayed for God to intervene, but he was already ahead of us.  They went in & were able to open up the valve so the blood could flow through.  The surgery was a success, but he has a condition known as tricuspid stenosis.  He has it because his heart healed itself & the scar tissue makes the valve narrow.  It's something that he could grow out of, but it's not likely...of course, he wasn't supposed to live after his 2nd OHS!  Just a few months later, he had another echo to see if the stenosis was worse, which we were told it was.  His case went before the surgeons to decide if he would have another valvuloplasty or if it was time to do the valve replacement.  We prayed without ceasing.  We took him to the pastor at church & had him anointed.  Just 2 days later, we were told that his pressure in his tricuspid valve was the same as it was after the valvuloplasty!  God had worked another miracle on my son.  We've been told that he'll need his tricuspid valve replaced one day, but the Great Physician hasn't chimed in on that just yet.  We just take it one day at a time & pray for God's will to be done.  I have read the statistics that are printed in books & on the websites & I hear what the doctors "predict."  But then I see what Troy is capable of & how he's proving them all wrong.  The "experts" say that a child with DS will walk around the age of 5...Troy was walking by 26 months.  They also refer to people with DS as being "mentally retarded."  Sure, he does things a little slower than kids without challenges, but look at all he's endured!  He can talk...he can say over 50 words.  He can tell you where every, & I mean EVERY body part is.  If you ask him what sound just about any animal makes, he can tell you.  We're working on the ABCs, colors, & shapes.  He's learning to sing, too.  He does do some sign language for the words he can't say just yet, like I love you, thank you, etc.  But he can follow commands & he communicates wonderfully!  Every where we go, he ALWAYS makes someone smile, which warms my soul.  The joy & love he spreads is so infectious & we see him touch the lives of our family, friends, & complete strangers on a daily basis.  None of the "experts" explain the unimaginable love & pride we'd experience, nor did they explain the pure blessings he'd bring to us.  They tend to focus on all of the POSSIBLE negativity that they fail to prepare us for all of the POSITIVE things we'd experience.   See, God made my little boy a little different for a reason.  He made him to help us be closer to Him & each other.  We don't want pity that our son has DS, we don't see him or his extra chromosome as a curse or a burden.  So when I say that I was not prepared for this, I'm not focusing on his so called delays or his health struggles, I'm meaning the terrific side of it all....how he's working so hard to prove those so called experts wrong.  Go on, T-Boy, SHOW OFF!  Show the world that your something extra makes you who you are & that's AMAZINGLY AWESOME!  We say that Troy's extra chromosome isn't an abnormality, it's a something extra from God that makes him ABSOLUTELY PERFECT!