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, November 30, 2011

My children

     My family is the most important people on this earth to me.  I met & fell in love with my husband in 1990, at the age of 14.  We have 2 PERFECT sons, Chancey & Troy, & our daughter is due in April.  Chancey will be 15 in March.  He has the most beautiful heart, he's so handsome, & did I mention how intelligent he is?  He plans on becoming a nurse when he 'grows up.'  He's taking a Health care course in high school that will help him prepare for college.  He wants to go to Vanderbilt University to pursue his medical career.  He LOVES sports, especially football, & video games.  He's a HUGE advocate for people with special needs.  He will stand up to anyone who makes fun of people with special needs, especially those who misuse the 'R' word.  He will open the door for anyone & respects his elders, which is something that is fading away this day & age.  He was taught manners when he was very little, & he still uses them today.  But he loves his little brother with his entire heart & soul.  It will warm your heart to see them interact.  I've had a countless number of people tell me how wonderful it is to see them together, that they can see their bond & unconditional love!  Troy will be 3 in January.  He is the most loving, wonderful, handsome, brilliant little boy I've ever met.  He's also the bravest boy I've ever met.  He's had OHS (open heart surgery) twice & valvuloplasty on his tricuspid valve...so that's a total 3 heart surgeries before he was even 2 years old.  He has tricuspid stenosis & will most likely have to have that valve replaced eventually.  But to see him, you wouldn't know that.  You'd see a determined toddler, who is happy go lucky, yet stubborn.  Despite all of his medical issues, he is thriving!  He LOVES Sesame Street, especially Elmo, & Mickey Mouse.  He can sense people who are genuine & will cling to those who show him unconditional love.  He works hard each & every day to reach his milestones.  Needless to say, I love my boys.  I am beyond proud of them...proud of who they are, proud of their accomplishments.  Does it hurt me that Chancey is a 'typical' child but Troy has Down syndrome?  Not in the least!  Am I ashamed that I have a child with special needs? NO WAY!  Do I hide the fact that Troy has DS?  Nope!  In fact, I try to educate others everyday.  Now, would I be hurt or disappointed if we found out that our daughter has special needs?  NO!  If that mattered to me or my husband, wouldn't we opt to do the prenatal testing?  Would we have even tried for another baby at all?  Now would I be happy if it turns out that God has blessed me with another child with DS?  You bet your life it would!  See, I view it like this.  God GAVE me Troy.  I didn't have a child that is considered 'abnormal' to society....God BLESSED me with this perfect soul who was made impeccable just for my family.  As a Christian, we see people who have children with special needs as being highly favored by God.  Therefore, if God blessed me with another child with special needs, then He is showing me favor, not cursing me.  But, do I pray that she doesn't have a heart condition?  YES!  I've watched Troy suffer...watched him code out right in front of my eyes.  I've had doctors tell me that he wouldn't survive.  I've had several friends whose children passed away way too soon because of their heart condition, & that's a scary thing.  It just rips my heart out of my chest!  I may be wrong in praying for a healthy baby.  But if she does have health issues, I won't love her any less...I won't wish her away...I won't resent her or God...I won't have a late term abortion.  I will love her just like I love my boys...in fact, I loved her the moment I found out I was pregnant...nothing will change that....not a heart condition, not Down syndrome, not Spina Bifida, not Cerebral Palsy...NOTHING!  That's like saying that I wouldn't love my baby if she turned out to be a boy.  Yes, I wanted a girl...always have wanted a daughter.  But that doesn't mean that I didn't want my boys.  God will give me the child that He sees fit...it's all out of my hands, out of the doctors hands, out of any one's control but His.  So when I'm happy that she is a girl, please don't judge me.  When I'm happy that she's healthy, please don't call me a bad mother or a selfish person.  Because I am sure that if you were pregnant that you wouldn't go up to your OB & say "Ok, Doc, on this ultrasound I hope you find out that my child will need countless surgeries, will endure extreme pain, go through months or years in the hospital, & require a lifetime of medications just to survive.  Don't you even dare tell me he or she is healthy because that's not what I want for my child."  So, then why is it so TERRIBLY AWFUL of me to pray for a healthy baby?  And why is it awful for me to be happy when I hear that she is doing well & to express that happiness?
     I hope that all of the people who were lashing out at me yesterday for being happy about the scan, will understand exactly what I meant in my status update on facebook.  Now with all of that said, I hope this subject can be laid to rest.  If you're still not convinced that I am proud of my children for exactly who they are, just keep reading my blog.  I hope that one of my entries will help you understand.

Saturday, October 8, 2011

In honor of DS awareness month

A meeting was held quite far from Earth.
It's time again for another birth!
"This special child will need much love,"
Said the angels to the Lord above.
His progress may be very slow
and his tone may be low.
He'll require extra care
from those who will love him down there.
It may take him longer to talk, walk, or play,
and progress may seem far, far away.
But he'll love with his entire heart
and every day he'll do his part
to get where he needs to be.
Which show a lot of character, if you ask me!
So let's be careful where he's sent,
because we want his life to be content.
Please, Lord, find the perfect parents who
will do this special job for You.
They will not realize it right away,
the leading role they're asked to play.
But with this child sent from above,
comes stronger faith and richer love.
Soon they'll know the privilege given,
in caring for their gift from Heaven.
Their precious charge, so meek and mild,
is HEAVEN'S VERY SPECIAL CHILD!

Friday, October 7, 2011

DOWN SYNDROME FACT #7

The proper use of language for “Down syndrome”:
• Down vs. Down’s - In America, it's Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage is Down syndrome. This is because an “apostrophe s” connotes... ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using “Down syndrome,” as well.
• People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” you should say “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”
• Down syndrome is a genetic condition, not a disease.
• People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.
• While it is unfortunately clinically acceptable to say “mental retardation,” you should use the more socially acceptable “intellectual disability.” Society strongly condemns the use of the word "retarded" in any derogatory context. Using this word is hurtful and suggests that people with disabilities are ignorant or stupid, which they are NOT!

Thursday, October 6, 2011

Down syndrome awareness month

     It just breaks my heart that Down syndrome awareness month is overshadowed by breast cancer awareness month.  In my opinion, Down syndrome awareness month should be in March.  Don't get me wrong, I am ALL for breast cancer awareness!  However, many people are aware of breast cancer, not many are aware of the FACTS about Down syndrome.  I know that breast cancer can be a deadly disease, it has hit my family, too.  But in reality, so is Down syndrome.  How, you may ask?  Well, just have a look at the statistics.  1 in approximately 700 children that are conceived have that something extra.  But if you look around, do you see 1 in 700 people LIVING with Down syndrome?  Nope!  That's because a whopping 90% of the parents who receive a prenatal diagnosis actually terminate the pregnancy.  Why?  In my opinion, it's because they are truly ignorant about the subject.  They may hear the grim & outdated statistics that their doctor gives them, or they may read outdated material on Down syndrome.  I must admit that I had a CVS test to determine if my child would be chromosomally enhanced, but I didn't do it to decide whether or not to terminate.  I just needed to be prepared & I'm glad I was.  However, nothing has prepared me for the pure love, joy, & happiness my son has brought to my life.  He has taught me so much already, & he's only 2 1/2!  The facts or myths won't prepare you for the positive things you will experience in raising this miracle from God.  Sure, my son was part of the 40% of people born with DS that have a CHD (congenital heart defect).  But that's just an obstacle in the road that one day we will overcome.  This journey has taught my family more than we could ever imagine & it has just begun.  Now, a few years ago you could've told me that I would have a child with special needs & my life couldn't possibly be happier for that & I would've thought you were insane.  Now I can't imagine my life without him.  As you know, I'm 11 weeks pregnant with my 3rd child.  On my very 1st OB appointment, I advised him that I didn't want any genetic testing.  He didn't question me, he said that it was totally up to me.  Why wouldn't I test?  Well, I see it this way.  God has trusted me, He has given me His favor, in blessing me with Troy.  So if He thinks that I deserve to be blessed double by having another child with DS, then so be it!  :)  
I really hope that I am able to reach just one soul in my quest this month.  I want to change the hearts, minds, & souls of those who are ignorant to the true facts on Down syndrome so that my Troy, & all of the people that I love that happen to have that something extra, will be respected.  They deserve that.  ♥

DS fact #5

There is wide variation in mental abilities, behavior and physical development in individuals with Down syndrome. Each individual has his/her own unique personality, capabilities and talents.

30% - 50% of the individuals with Down syndrome have heart defects and 8% - 12% have gastrointestinal tract abnormalities present at birth. Most of these defects are now correctable by surgery.

Individuals with Down syndrome benefit from loving homes, early intervention, inclusive education, appropriate medical care and positive public attitudes.

In adulthood, many persons with Down syndrome hold jobs, live independently and enjoy recreational opportunities in their communities.

Tuesday, October 4, 2011

Down syndrome awareness month fact #4

 • Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies is born with Down syndrome, however, 90% of parents who receive the prenatal diagnosis terminate the pregnancy!
• There are more than 400,000 people living with Down syndrome in the United States.
• Down syndrome occurs in people of all races and economic levels.
• The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.
• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

Monday, October 3, 2011

DS Awarness month fact #3

   About 1 in 800 babies is born with Down syndrome. Though popular belief is that babies with it are born mostly to older mothers, in fact 80% of these babies are born to mothers under age 35.  Did you also know that 90% of parents who receive the prenatal diagnosis of Down syndrome terminate the pregnancy?  That's why you rarely see people with Down syndrome.  :(  But in my opinion, people who are chosen by God to be their parents are blessed (yes, I said blessed) to be given these spectacular children.  Personally, my son has taught me more than I've taught him during these short 2 1/2 years.  During this month of awareness, please educate yourselves & your loved ones on the true facts about Down syndrome, not the myths or hear say.  If there's something you want to know or are unclear about, just ask me.  I'll be glad to answer any questions.  :)

Sunday, October 2, 2011

DS fact, Day 2

Down syndrome or trisomy 21, is a chromosomal condition caused by the presence of all or part of an extra 21st chromosome. It is named after John Langdon Down, the British physician who described the syndrome in 1866. The condition was clinically described earlier in the 19th century by Jean Etienne Dominique Esquirol in 1838 and Edouard Seguin in 1844.  Down syndrome was identified as a chromosome 21 trisomy by Dr. Jérôme Lejeune in 1959.

Saturday, October 1, 2011

Down syndrome awareness

Today is the first day of Down syndrome awareness month!  Each day this month, I'm going to blog about Down syndrome.  :)
When someone has Down syndrome, it just means that they have an extra chromosome.  Contrary to what some people think, they aren't born missing anything...they just have something extra.  Down syndrome occurs when there's an extra copy of the 21st chromosome, that's why it's also called Trisomy 21.  The extra chromosome makes some things more challenging, but not impossible.  Just because it takes someone with Down syndrome a little longer to accomplish some things doesn't make them stupid or retarded.  In my opinion, it makes them exceptional.  Let's use my son as an example.  He had 3 heart surgeries by the time he was 2 years old & didn't walk unassisted until he was 26 months old.  Yes, typical babies walk before they're a year old.  However, he had a rough start to his life.  He was in CHF (congestive heart failure) at 2 weeks old.  He had his first OHS (open heart surgery) before he turned 5 months, then a second one at 7 months (which he wasn't expected to survive).  He also had a valvuloplasty of his tricuspid valve at 23 months.   So if you ask me, he's one determined little boy to have endured all of this & still work so hard to walk by himself.  He can do all of the things that people who aren't blessed with his something extra can do, he just has to work a little harder & longer to accomplish it.  That makes him & EVERYONE with Down syndrome amazing.  So next time you look down upon someone with Down syndrome, think of the obstacles they have had to overcome to get where they are.  Don't see their characteristics & judge them, remember how much they've endured & how hard they've worked & give them the respect they deserve.

Wednesday, September 14, 2011

Three is a charm!

     We found out Saturday (9/10/11) morning that I'm pregnant!  I went to the doctor yesterday (9/13/11) & was able to see the baby on ultrasound & hear it's heartbeat!  That was very reassuring to us.  I don't like to announce anything before 12 weeks, but the doctor was confident that all is well with the baby.  He even mentioned that the baby has a STRONG heartbeat.  With my history, I have to give myself shots in my belly each day, up until the day before I deliver.  If you're asking why, here's the explanation.  I have a blood clotting disorder called anticardiolipin antibodies.  Which means that my body thinks the baby is a blood clot, so it attacks it & destroys the baby.  I give myself a blood thinning shot, which prevents that from happening.  And so far, so good.  :)  We've been trying to conceive since January.  I had a miscarriage a few months ago, but I lost it at just a couple of weeks.  Now I'm almost 8 weeks, so we're very hopeful.  I go back in 2 weeks to have another ultrasound & a check up.  We're praying that all goes well & for a HEALTHY baby.  God has shown favor on us by giving us this precious addition & we thank Him every second for that favor.
     I'm taking the boys to have their flu shots this afternoon.  And boy, am I glad that Troy doesn't have to have Synagis shots any longer!  He had such a bad reaction after the shots, but we knew that was nothing compared to the alternative.  But, still, so glad that is over!  Then tomorrow, we take Troy to the Gastroenterologist in Atlanta to see what's going on with his little tummy.  Yep, it's been a busy week & the weekend will be just as busy.  We have the Heart Walk, Joy Ministry social, Clermont Days...& somewhere in between, we have to see what our options are for buying either me a mini van or Mack a bigger truck. 
     Since I am pregnant, I can't take my melatonin to help me sleep.  Therefore, I've had MANY sleepless nights lately.  I'm hoping my hormones kick in soon & allow me to get some well needed sleep!

Thursday, September 8, 2011

Decisions

Well, I've made a few decisions today.  Troy's Babies Can't Wait coordinator came for his 6 month review today & we had a nice conversation.  I told her my concerns about the speech school.  She agrees with me & is going to see about getting Troy a therapist that will come to our house & work one & one with him.  I'm so happy about that.  I know that he'll only get to have this one on one therapy for 3 1/2 months, but that's better than nothing.  She did mention that she'll come back for a visit next month to check on how the speech is going & to discuss what we'll need to decide about when Troy turns 3.  Three?  My baby will be three in 4 months!  :(
As I'm sure you've heard, Troy is on his 3rd round of antibiotics since Chancey started school one month ago.  I'm not sure if he picked up this latest bug from Chancey (who has only been a little sick once) or if he got it from his speech school.  I hope these germs stay away from my family!  So that's another reason why I decided to take Troy out of speech school.
Chancey is doing so well in school!  I am so proud of him!  I check his grades every other day & he has all HIGH A's (2 100's-1 in English, 1 in World History) & only 1 HIGH B.  I know, he's only been there a month, but this is a fantastic start!  I don't know his grade in his healthcare class, but I'm sure it's great.  I'm so proud that he's going to be in the healthcare field!  :)  Now, if only these insecure, immature boys will grow up & let him be, we'll be fine.  Oh, & did I mention that he was elected the treasurer of the HOSA (healthcare club)?!  SO proud, so proud!
Troy is doing so well, other than these infections.  He's talking up a storm & putting 2, sometimes 3 words together at a time.  He's learning his shapes & trying to learn his colors & ABC's.  He's starting to run, too...it's so cute!  We're going to our very first meeting at church for the Joy Ministry next Saturday (which is going to be a BUSY day...we also have the Heart Walk that morning)!  The Joy Ministry is for kids with special needs.  I'm hoping to also help out with the teaching sometime soon.
I'm just so blessed & I thank God everyday for giving me the perfect husband, 2 perfect boys, & for trusting me with them.  I think back to when I heard that Troy had DS.  I was devastated...then after the shock wore off & I began to accept God's plan, I thought "God has a reason for making my son special."  And now I know why He did that, it was to make me a better person.  To make me more compassionate, loving, understanding, empathetic, & protective.  I wouldn't change a thing about my life, not one little second or one little detail...it's wonderful the way it is & the people who are standing right beside me are so terrific.  Like I said, I'm so blessed.  ♥

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!

Friday, July 22, 2011

Update

     We've been SO busy lately that I haven't had any time to blog! 
     Yesterday, Troy had a speech evaluation with a local therapist that comes HIGHLY recommended.  She was totally awesome & we are very pleased that she'll be working with T-boy.  She had nothing but kind words to say about him & doted constantly on how smart he is!  She administered the test & was worried that he would not qualify for services because he was surpassing all of the guidelines!!!  She commented that he had the best tongue/mouth control she had ever seen!  She even asked me if I taught him to keep his tongue in his mouth.  After the test was finished, she told me that he was one of the brightest kids with DS she has ever worked with.  She must have told me a million times that I was doing a wonderful job & that I am an awesome mother for working with him so much.  Then she asked me if he had ever had an ear infection, I told her that he hasn't had a single one & she was surprised.  Then she asked me if he had any heart problems.  I told her that he has had 3 heart surgeries so far, & we don't know if or when he'll need another one.  When she found out that he had already endured 3 heart surgeries, she really was astonished at how well he was communicating, how bright he is, & how well behaved he is!  She said that normally parents "baby" their kids when they have heart problems...she was just amazed, period.  He's only approximately 6 months behind where "typical" kids should be in his communication/speech/comprehension skills.  That's so awesome...I figured he was at least a year & a half behind.  It makes me feel so much better knowing that he's learning, that means I'm doing my job!
     I think that horrid virus has finally left our house for good!  Now my Troy is spitting up again.  I'm thinking that it's the PediaSure.  He wasn't spitting up at all when I stopped giving it to him a few weeks ago.  I'm going to take him off of it again & see if that clears it up.  If not, we'll be going to see a pediatric gastroenterologist again.  He's eating so much better now, so I don't think he needs the PediaSure...I just started giving it to him to build him back up after that virus.  Today, he ate almost all of my Lean Cuisine Chicken Penne Pasta at lunch!
     We're gearing up for "back to school!"  Chancey will be a freshman, yes, I said a freshman, this year.  He starts high school on August 8th.  He still doesn't have his schedule....which ticks me off because he has friends at several other schools in our county & they all have their schedules.  We're supposed to know his on August 2nd & have an ice cream social on August 4th.  Open house isn't until towards the end of August, which is pointless if you ask me!  I hope he'll get a basic tour when we go for the ice cream social.  He's excited about being in high school, but he doesn't really like this school, so he's not really ready to go back.
     Mack & I have started eating & drinking more healthy & we are working out 5 days a week.  He's lost 10 lbs & I've lost 20!  We were walking 4 to 4.5 miles a day until I fractured my foot on top of tendonitis in 2 places in my foot.  Now we hit the recumbant bike & do 5 to 7 miles per day then do some weight lifting afterwards.  I'm so proud of our progress!

Monday, July 11, 2011

Our vacation

     We had the most WONDERFUL time last week on our first family beach vacation!  We went to Jacksonville Beach, Florida because it is very special to us.  That's where Mack was stationed at while he was in the US Navy & that's the first beach we took Chancey to when he was the same age as Troy is now.  We arrived around 11:30 a.m. so we decided to hit the beach (because we couldn't check in at the motel until 1:00 p.m.)  At first Troy was a little scared of the ocean.  But when he realized that it was water, he was so excited!  He looked at the ocean & signed & said "bath!"  We let his little feet touch the water because he had his clothes & diaper on, instead of his Little Swimmers & his floaty suit.  He decided to go a little deeper & got SOAKED!  Then he wanted to sit down & play in the wet sand.  We played for a while until it was time to check in at the motel...we needed to bath Troy & get our suits on.  While we were there, we would tell him that we were at the beach, so he learned to say "beach!"  And for the very first time, he learned to say "water" instead of "bath!" 
     We also took a trip down to Daytona Beach & played in the ocean there...mainly because Chancey wanted to go there.  We were able to play in the ocean & on the beach before the rain started.  We wanted to do the tour of Daytona International Speedway (since we're HUGE Nascar fans), but we couldn't in the rain.  Chancey wanted to ride go karts, but he couldn't in the rain.  So we did some shopping & headed up A1A to St. Augustine.  It was rainy there, as well so we couldn't tour there either.  :(  We wanted to go to the fort, since we took Chancey there when he was 5, but it was closed.  We headed back to Jacksonville via A1A, so we could see the beach the entire time.  The next morning, it was the day of the very last space shuttle launch for NASA, so we went to the beach to see it.  But it was too cloudy to see anything.  We headed back toward Georgia...I wanted to go to Savannah/Tybee Island.  Man, Tybee Island was more crowded than Jax & Daytona Beaches put together!  But, Jax Beach is by far the most beautiful beach!  We ate at some AWESOME places, too...Dick's Wings, Salt Life Food Shack, Mama Mia's, Whattaburger, & Western Sizzlin....YUM! 
     We try to go on a little vacation each year, but we normally head to Gatlinburg/Pigeon Forge, TN.  It's special to us, too....that's where Mack & I were married! ♥  I don't like to get too far from home with Troy's heart.  But I prayed about it for quite some time.  I also made sure his cardiologist said it was safe before booking the trip.  We really wanted to take our boys to the beach!  Chancey & Troy both just LOVE the water!  I think they had a blast!  I know that Troy won't remember this vacation, but I took TONS of pictures to show him when he gets older (Chancey is at that age where he doesn't want his picture made, so I had to either bribe him or sneak pictures when he didn't notice)!  If you want to see my pictures, check out the album: Vacation 2011 on my facebook page.
     We don't look like we've been to the beach...I COVERED everyone with 50 SPF sunscreen (we went through 2 1/2 bottles of sunscreen).  Chancey did get a little sunburn because he got in the pool while Troy was napping, I was putting on makeup, & Mack was scoping out what to do when Troy woke up.  I got a little sunburn on my back, but that's it.  I wish we could've stayed longer, but our dog was REALLY missing us, so we came home.  Four days without us was too much for her!  Chancey was really upset that she was having a hard time at home without us...so he wasn't enjoying himself the last day.  But, I appreciate my FIL & MIL house sitting for us & trying to help our dog cope.  They're AWESOME!  :)  I had such a wonderful time with my perfect little family, we made memories that I'll cherish forever. 
  

Tuesday, June 14, 2011

Voice of God

(This is an email that Sarah Palin wrote as the voice of God.  It's a must read!)
     To the Sisters, Brother, Grandparents, Aunts, Uncles, Cousins, and Friends of Trig Paxson Van Palin (or whatever you end up naming him!):
I am blessing you with this surprise baby because I only want the best for you. I’ve heard your prayers that this baby will be happy and healthy, and I’ve answered them because I only want the best for you!
     I heard your heart when you hinted that another boy would fit best in the Palin family, to round it out and complete that starting five line-up. Though another girl would be so nice, you didn’t think you could ask for what you REALLY wanted, but I knew, so I gave you a boy because I only want the best for you!
     Then, I put the idea in your hearts that his name should be “Trig”, because it’s so fitting, with two Norse meanings: “True” and “Brave Victory”. You also have a Bristol Bay relative with that name, so I knew it would be best for you!
     Then, I let Trig’s mom have an exceptionally comfortable pregnancy so she could enjoy every minute of it, and I even seemed to rush it along so she could wait until near the end to surprise you with the news – that way Piper wouldn’t have so long to wait and count down so many days – just like Christmastime when you have to wait, impatiently, for that special day to finally open your gift? (Or the way the Palins look forward to birthday celebrations that go on for three, four days… you all really like cake .) I know you, I knew you’d be better off with just a short time to wait!
     Then, finally, I let Trig’s mom and dad find out before he was born that this little boy will truly be a GIFT. They were told in early tests that Trig may provide more challenges, and more joy, than what they ever may have imagined or ever asked for. At first the news seemed unreal and sad and confusing . But I gave Trig’ s mom and dad lots of time to think about it because they needed lots of time to understand that everything will be OK, in fact, everything will be great, because I only want the best for you!
     I’ve given Trig’s mom and dad peace and joy as they wait to meet their new son. I gave them a happy anticipation because they asked me for that. I’ll give all of you the same happy anticipation and strength to deal with Trig’s challenges, but I won’t impose on you…
     I just need to know you want to receive my offer to be with all of you and help you everyday to make Trig’s life a great one.
     This new person in your life can help everyone put things in perspective and bind us together and get everyone focused on what really matters . The baby will expand your world and let you see and feel things you haven’t experienced yet. He’ll show you what “true, brave victory” really means as those who love him will think less about self and focus less on what the world tells you is “normal” or “perfect”. You will grow and be blessed with greater understanding that will be born along with Trig.
     Trig will be his dad’s little buddy and he’ll wear Carhartts while he learns to tinker in the garage. He’ll love to be read to, he’ll want to play goalie, and he’ll steal his mom’s heart just like Track, Bristol, Willow and Piper did. And Trig will be the cuddly, innocent, mischievous, dependent little brother that his siblings have been waiting for in fact Trig will – in some diagnostic ways – always be a mischievous, dependent little brother, because I created him a bit different than a lot of babies born into this world today.
     Every child is created special, with awesome purpose and amazing potential. Children are the most precious and promising ingredient in this mixed up world you live in down there on earth. Trig is no different, except he has one extra chromosome. Doctors call it “Down syndrome”, and people with Down syndrome have challenges, but can bring you much delight and more love than you can ever imagine! Just wait and see, let me prove this, because I only want the best for you!
     Some of the rest of the world may not want him, but take comfort in that because the world will not compete for him. Take care of him and he will always be yours!
     Trig’s mom and dad don’t want people to focus on the baby’s extra chromosome. They’re human, so they haven’t known how to explain this to people who are so caring and are interested in this new little Alaskan. Sarah and Todd want people to share in the joy of this gift I’m giving to the Palin family, and the greater Alaska family. Many people won’t understand… and I understand that. Some will think Trig should not be allowed to be born because they fear he won’t be considered “perfect” in your world. (But tell me, what do you earthlings consider “perfect” or even “normal” anyway? Have you peeked down any grocery store isle, or school hallway, or into your office lunchroom lately? Or considered the odd celebrities you celebrate as “perfect” on t.v.? Have you noticed I make `em all shapes and sizes? Believe me ,, there is no “perfect”!)
     Many people will express sympathy, but you don’t want or need that, because Trig will be a joy. You will have to trust me on this.
     I know it will take time to grasp this and come to accept that I only want the best for you, and I only give my best. Remember though: “My ways are not your ways, my thoughts are not your thoughts… for as the heavens are higher than the earth, my ways are higher than yours!”
     I wrote that all down for you in the Good Book ! Look it up! You claim that you believe me – now it’s time to live out that belief!
     Please look to me as this new challenge and chapter of life unfolds in front of you. I promise to equip you. I won’t give you anything you can’t handle. I am answering your prayers. Trig can’t wait to meet you. I’m giving you ONLY THE BEST!
   
               Love,
     Trig’s Creator, Your Heavenly Father

Friday, June 10, 2011

I am a proud Italian & Holland mama! ♥

Welcome To Holland
by:  Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans. The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It’s just a different place.  It's slower-paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever  go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

♥♥♥♥♥♥☺☺☺☺☺☺♥♥♥♥♥♥☺☺☺☺☺☺♥♥♥♥♥♥☺☺☺☺☺☺
I am the mother of 2 children that were made perfectly for me.  One of my children doesn't have special needs, & one does.  But my love for both of my boys is equal.  I don't prefer one to the other.  I don't treat them any different.  I do have to do more for my son that has special needs, but doesn't mean that I love him any more, or my other son any less.  But I can say that I would not trade being their mother for anything in the entire world.  I wouldn't change my trip to Holland, either!  I am a proud Italian & Holland mama!  :) 

Thursday, June 9, 2011

Facelift

     I'm sure, if you follow my blog, that you notice I've removed my pictures.  It breaks my heart not to be able to share my family with you, but I can't have trolls stealing my pictures then using them as a target of their inhumane jokes.  I'm sorry, but I'm sure you understand.  :)  Troy amazes me each & everyday & I hate that I can't share pictures or videos of his progress with you all.  I took off the rest of our pictures because I didn't think it was fair to Troy.  But, I will continue blogging...they can't steal that from me!
     With all of this troll business today, I forgot to post the results of Troy's cardiologist visit.  All is well, praise the Lord!  His pressure levels are the same as they have been since his surgery in December.  He actually gained almost a pound in two weeks!  So now he weighs in at 25 lbs 14 oz & is 33" tall!  :)  He cut his Lasix back from twice a day, to once a day!  If I see any signs of heart failure, then I am to resume the Lasix back twice a day.  He knows my medical background, so he said he's confident in my judgement!  We go back in October for another check up.  But he was very pleased with Troy's progress.  Proof again that miracles happen when they're asked for & that prayer works!  Thanks again to all who have prayed & continue to pray for him!
     If you follow Nascar, then you know that the Prelude to a Dream race was last night.  I'm proud to report that Clint Bowyer won & he was on team CHOA!  This means that CHOA will receive 30% of the net money raised during the event.  There were 3 other Children's hospitals that were being showcased:  Children's Medical Center of Dallas (will receive 25% of the net money raised), St. Louis Children's Hospital, & Levine Children's Hospital (each will receive 20% of the net money raised).  What a fantastic idea & a wonderful charity event.  Also, Steve-O was on Minute To Win It & the money he received, $25,000, will go to the National Down Syndrome Congress.  Way to go, Steve-O & the participants of the Prelude to a Dream!
    

Friday, June 3, 2011

If you have children, or if you're a teenager, PLEASE read this!

     As the mother of a teenager, I have heard the "R" word (retard, retarded, tard, etc.) thrown around like it's nothing.  People, not just teens, are either using it to call something or someone stupid.  Sometimes they do use it as it's correct meaning, but in a derogatory manner.  Here's the definition of retard:  to slow up especially by preventing or hindering advance or accomplishment.  No where in that definition is STUPID, DUMB, IGNORANT, SILLY, or CRAZY mentioned.  It just makes my blood boil when I hear that word used incorrectly.  See, my son, Troy has Down syndrome.  Because he has that extra chromosome, he is labelled mentally retarded.  Which is true.  He's not where a child without the extra chromosome is at his age.  But that doesn't mean he's stupid.  That just means that he has to work a little harder for a little longer, but one day he'll be where he needs to be.  But that doesn't give anyone the right to call him names or make fun of him in any way.  He's a human being that has feelings & deserves RESPECT, so do the people that love him.  It's also inappropriate to call someone slow or special....it implies the same thing.   I've even noticed that doctors & therapists do not use the "R" word much any more.  They now use the term delayed., which is more appropriate.  Just like using the word nigger is offensive, retard is just as offensive.  Would you say the "N" word in public or in front of others?  Seriously, if you need a variety of words to use, then pick up a dictionary or a thesarus.  Because when you misuse these words, you are making yourself look bad & you are offending those near you, like me!  Please think before you speak because words do hurt & offend others.  Just put yourself in my shoes.  Would you like to hear people degrading your child or someone close to you?  ~Also, think before you type.  I've seen so many people on facebook use the "R" word in a degrading manner.  If you mean stupid, say stupid, not retarded.  I know that many of my blogs & status updates are about this topic, but it's very dear to my heart.  When the world is finally rid of this stereotypical word, then & only then, will my job be done.  We're all different in so many ways, but alike in others, so don't judge others...it's not our job, that's up to God.  And think of it this way, God put us all on earth for a reason & He made us just the way he wanted us to be made, when you judge mankind, you're judging God!
     Here are some words you can use when you want to imply something or someone is stupid in lieu of saying the "R" word:  uneducated, uninformed, mindless, imbecile, unwise, asinine, irrational, ignorant, dumb, clueless, & unknowing.
     Visit http://www.r-word.org/ to take the pledge to stop misusing the "R" word.  Spread The Word To End The Word.

Wednesday, June 1, 2011

God answers prayers in 3 ways...

     God answer prayers in three ways.  God says yes and gives what you want.  God says no and gives you something better.  God says wait and gives you the best!  I've learned first hand that this is true.  For almost 10 years Mack & I wanted another child.  Over those 10 years, I lost 6 precious babies.  In 2005, I was saved & was baptised with Chancey just days before my birthday.  Our lives changed tremendously.  We started listening to only Christian music, we were at church every time the doors were open, we began saying Grace at every meal, we stopped using curse words, & we witnessed to every one we could.  Later that year, I became very ill.  I didn't know what I did wrong, where I went wrong.  But I didn't blame or question God or give up.  I kept on praying & knowing that God could & would heal me.  I knew that God had a reason for me to be so close to death.  I spent nearly a year in the hospital.  I couldn't eat or drink, I was fed intravenously for nearly the entire year.  Someone from my church would come at least once a week to visit me in the hospital & pray over me.  It was so hard watching my husband's & our son's lives turned upside down.  I wanted to be back to my old self, but that seemed to be just a dream.  I laid in the hospital & wasted away wishing that I could either just die or get better.  It was just so hard seeing my family look at me with pity & frustration.  Finally, I was able to go home.  But I had to have a nurse come to care for my central IV line & check in on me.  I was at home, but I was no where near back to normal....far, far, far from being healthy.  I couldn't hardly get out of the bed to go to the bathroom, much less try to enjoy my life & the life I had built with my husband & our son.  If I did get out, I was sick the entire time & just wanted to go back home & go to bed.  I was taking several IV medications, pain medications, anti-emetics, & even having to have fluids intravenously a few days out of the week.  I still couldn't eat or drink very much...the only time I would eat or drink was when I was forced to.  It was just to hard to have anything in my stomach.  Then I started having what we called "spells."  I couldn't think straight or sit still, I would sweat profusely, & my skin would crawl.  These "spells" went on for well over a year.  I went to several doctors & even a psychiatrist, every doctor said I was experiencing panic attacks.  I was put on medications to help them, but nothing helped.  I researched panic attacks on the internet.  It said that you can shorten the attacks by meditating & using breathing exercises.  But again, nothing helped.  The "spells" would come on with no warning at all hours of the day/night & last for hours, even days.  I was just about ready to admit myself to a psychiatric hospital, they were that bad.  I began to break out in fevers every weekend.  You could mark your calendar & watch by me because the fevers would hit at 7:00 p.m. on Friday night, every Friday & go on through Sunday night.  This went on for months.  I went to 2 different ERs & even to my specialist.  No one could explain the fevers.  Plus I was tachycardic (my heart rate was higher than normal).  So my doctor decided that having that central line in my chest could be causing the fevers & since I had sepsis half a dozen times in the past few years, he didn't want to chance anything, so he scheduled me for the procedure to take it out.  A few weeks after having my IV out, I was still having the fevers.  Then all of the sudden, the fevers stopped, but the "spells" kept coming.  Nothing could break them.  I was taking the highest dose of Xanax, sleeping pills, & pain pills...nothing helped.  :(  A few weeks later, I started getting more nauseous & couldn't hold anything down.  I was so scared that the pseudocysts were filling back up or were absessed again, but things weren't getting worse so I just thought this was part of the process of my new life.  We went to my family reunion on Sunday & that night I decided that I wanted a chili dog from Sonic (if you know me, then you know that I HATE hot dogs).  We got home from eating & I wanted to lay down because I was already feeling sick.  Mack came in the bedroom with me & we turned on the TV.  The show 'I Didn't Know I Was Pregnant' was on.  The more I laid there, the sicker I became.  After vomiting, it hit me.  I could be pregnant!  Strange cravings, vomiting, chronic fatigue, all were signs of pregnancy.  I told Mack my theory & he jumped up to go get me a pregnancy test.  The next morning I took it, & sure enough, I was pregnant!  I was really concerned since I was so sick & was on A LOT of dangerous medications, so I called my OB/GYN.  I went to see him that afternoon.  They confirmed the pregnancy.  I advised them of my history of miscarriage & what the infertility clinic had told me when I went there (I have a blood clotting disorder & my body thinks the baby is a blood clot & it attacks the baby until it dies...so I have to take Heparin shots in my stomach everyday from the time of conception to right up to the delivery).  They wanted to do an ultrasound to make sure the baby was fine & just to see how far along I was.  I called Mack to tell him to come straight to the doctor's office on his way home so he could see the baby.  He got there just in time.  I found out that I was 8 weeks pregnant & the baby was fine.  We both got to see our little baby & even hear his little heartbeat.  It was just amazing.  I was told that I had to go to a Perinatalogist so he could monitor my clotting disorder & help me get off the medications that I was taking that would harm the baby.  I slowly weaned off the pain patch over the next few weeks.  I stopped taking the Xanax & all of my pain medications.  The only thing I took was the anti-emetics & they were safe to take.  Then the Perinatalogist determined that the skin on the baby's neck was thicker than it should be.  He wanted to do a CVS test to see if the baby had Down syndrome.  He thought that the baby had a 1%-2% chance of having Down syndrome, but I wanted the test done.  I was NOT considering an abortion, let me make that clear.  I am the type of person that needs to know so I can process everything, research it, & deal with it.  About a month later, it was confirmed.  I was having a boy & he did have an extra chromosome.  I grieved for about a week, then after talking to my husband, my mother in law, & God, I was over it.  I knew that God had his reasons.  Then after a ROUGH & I mean ROUGH 4 months, I began to feel great.  No more spells!  Then I found out that those "spells" were a type of reaction to the Fentanyl in the pain patch!  I was so relieved that I wasn't crazy (LOL).  One night, we were at the funeral home & our associate pastor was there.  He knew what we had been through because he was there every step of the way.  He told me something that I will never, ever forget.  He said, "You know, that baby is your crown."  I asked him what he meant by that.  He said, "After all you have been through, you never gave up.  You never questioned God & you never stopped believing that He would heal you.  So your baby is your reward, your crown, for believing & never giving up."  Then it hit me.  Yes, he was my crown & I was going to wear my crown proudly.  We had prayed for another baby for 10 years & God gave us one.  He has Down syndrome, so what?!  He was PERFECTLY made for us.  Yeah, some people think of Down syndrome as an imperfection, an abnormality, but not us.  We see Troy as the link we've been praying for & he's absolutely flawless.  So, you see, God does answer your prayers.  Maybe not when you want them answered.  He may not answer the prayer in the way you want Him to, but He will give you what He sees fit.  You never know, the answer you receive may bless you more than you ever imagined.  Look at what all I endured; years & years of agony, suffering, & extreme pain but I wouldn't take away one second of that journey if it meant that I'd have to give up Troy.  So the next time you pray for something & you don't receive it when you want it, think of me.  Think of the years it took me to have my prayers answered.  ~I still have the illness, it will never go away, but I'll take it in return for Troy.~  Don't give up & don't question God.  He knows what He's doing, even if you don't at the moment!  :)

Saturday, May 28, 2011

An Everyday Survival Kit

An Everyday Survival Kit
Toothpick, rubber band, Band-aid, pencil, eraser, chewing gum, a mint, Hershey's Kisses, & a tea bag.

Here's why:

Toothpick - To remind you to pick out the good qualities in others (Matt 7:1).

Rubber band - To remind you to be flexible, things might not always go the way you want, but it will work out (Romans 8:28).

Band-Aid - To remind you to heal hurt feelings, yours or someone else's (Col.3:12-14).

Pencil - To remind you to list your blessings everyday (Eph 1:3).

Eraser - To remind you that everyone makes mistakes, and it's okay (Gen. 50:15-21).

Chewing gum - To remind you to stick with it and you can accomplish anything (Phil 4:13).

Mint - To remind you that you are worth mint to your heavenly father (John 3:16-17).

Hershey's Kisses - To remind you that everyone needs a kiss or a hug everyday (1 John 4:7).

Tea bag - To remind you to relax daily and go over that list of God's blessings (1 Thess 5:18).

To the world, you may just be somebody...but to somebody, you may be the world!  :) ♥

Friday, May 27, 2011

One flaw in women

One Flaw In Women

Author Unknown

By the time the Lord made woman,
He was into his sixth day of working overtime.
An angel appeared and said,
"Why are you spending so much time on this one?"
And the Lord answered, "Have you seen my spec sheet on her?
She has to be completely washable, but not plastic,
have over 200 movable parts, all replaceable
and able to run on sweet tea and leftovers,
have a lap that can hold four children at one time,
have a kiss that can cure anything from a scraped knee to a broken heart
-and she will do everything
with only two hands."
The angel was astounded at the requirements.
"Only two hands!? No way!
And that's just on the standard model?
That's too much work for one day.
Wait until tomorrow to finish."
But I won't," the Lord protested.
"I am so close to finishing this creation that is so close to my own heart.
She already heals herself when she is sick
AND can work 18 hour days."
The angel moved closer and touched the woman.
"But you have made her so soft, Lord."
"She is soft," the Lord agreed,
"but I have also made her tough.
You have no idea what she can endure or accomplish."
"Will she be able to think?", asked the angel.
The Lord replied,
"Not only will she be able to think,
she will be able to reason and negotiate."
The angel then noticed something,
and reaching out, touched the woman's cheek.
"Oops, it looks like you have a leak in this model.
I told you that you were trying to put too much into this one."
"That's not a leak,"
the Lord corrected,
"that's a tear!"
"What's the tear for?" the angel asked.
The Lord said, "The tear is her way of expressing her joy,
her sorrow, her pain, her disappointment, her love,
her loneliness, her grief and her pride."
The angel was impressed.
"You are a genius, Lord.
You thought of everything!
Woman is truly amazing."
And she is!
Women have strengths that amaze men.
They bear hardships and they carry burdens,
but they hold happiness,
love and joy.
They smile when they want to scream.
They sing when they want to cry.
They cry when they are happy
and laugh when they are nervous.
They fight for what they believe in.
They stand up to injustice.
They don't take "no" for an answer
when they believe there is a better solution.
They go without so their family can have.
They go to the doctor with a frightened friend.
They love unconditionally.
They cry when their children excel
and cheer when their friends get awards.
They are happy when they hear about
a birth or a wedding.
Their hearts break when a friend dies.
They grieve at the loss of a family member,
yet they are strong when they think there is no strength left.
They know that a hug and a kiss
can heal a broken heart.
Women come in all shapes, sizes and colors.
They'll drive, fly, walk, run or e-mail you
to show how much they care about you.
The heart of a woman is what makes the world keep turning.
They bring joy, hope and love.
They have compassion and ideals.
They give moral support to their family and friends.
Women have vital things to say and everything to give.
However, if there is one flaw in women,
it is that they forget their worth.
_________________________________________________________________________________
This poem was emailed to me by a dear, sweet friend of mine.  I hope it is as encouraging to you as it is to me.  God bless!

Wednesday, May 25, 2011

Another miracle

"Is anyone among you in trouble? Let them pray. Is anyone happy? Let them sing songs of praise. Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. And the prayer offered in faith will make them well; the Lord will raise them up. If they have sinned, they will be forgiven. Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective."  ~James 5:13-16 NIV
We had Troy anointed at church on Sunday & we found out on Tuesday that an inevitable heart surgery was no longer needed.  No intervention was needed because his heart remains unchanged from his last surgery!    Some people may argue that it was the doctor's error, that a mistake was made.  But to me & my family, this is a miracle from God.  Not only was Troy anointed at church, but he had a lot of people praying for him.  The bible says "For where two or three come together in My name, there am I with them.  ~Matthew 18:20 NIV 
Troy heart is not healed, let me make that clear.  He still has tricuspid stenosis, but he doesn't need to have surgery right now.  (Tricuspid stenosis is a narrowing or blockage of the tricuspid valve. The tricuspid valve regulates the blood flow from the heart's upper-right chamber [the right atrium] to the lower-right chamber [the right ventricle]. Tricuspid stenosis causes the right atrium to become enlarged, while the right ventricle does not get enough blood.  Symptoms of tricuspid stenosis are fatigue and the pain of an enlarged liver.)  He still has to take Lasix (a diuretic) twice a day to prevent fluid build up from congestive heart failure.  His liver is still distended & swollen.  The pressure gradient in his tricuspid valve is supposed to be at zero, his is at 8.  The lower the number the better.  When he had to be rushed to CHOA @ Egleston in December & have emergency surgery the following day, his pressure was at 16.  If he would grow then his heart would grow, which is what we need.  But it's hard for him to grow when he's taking Lasix twice a day.  It's hard to want to eat when your liver is swollen. 
Please just keep him in your prayers.  If his condition worsens, he'll need surgery.  They'll either do the valvuloplasty again or he'll begin on another journey, valve replacement.  If he has the valve replacement, he'll have to have the artificial valve replaced again every 2 years until he stops growing & every 10 years after that.  So if he has to have the valve replacement at the age of 3 & he lives to be 100, he'll have to have open heart surgery 17 more times.  :(  This miracle is proof that God is hearing each & every prayer...I can never repay you for your prayers, but I can pay it forward.  May God bless you beyond measure. ♥  I've witnessed another miracle, so have you.  So if you're going through some type of tribulation, give it to God.  Ask for prayers.  God will answer your cries & the prayers of others.  I'll be glad to pray for you or anyone who needs prayer.  I know first hand that God works in the lives of those who believe & ask for help.  I've witnessed so many miracles in my short 35 years...God may not give you the answer you seek, but the answer He gives you may just be better than what you asked Him for.  "So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand."   ~Isaiah 41:10 NIV.  Which reminds me of a quote, "God never closes one door without opening another, but sometimes He makes us wait in the hallway."

Tuesday, May 24, 2011

The decision

At 1:15 p.m., I could not bear to wait any longer.  So just after putting Troy down for his nap, I called the cardiologist for the results of the conference yesterday.  He was at the hospital & the nurse was at lunch.  So the receptionist said that she'd have him call me as soon as he came back in the door.  Then less than 30 minutes later, my phone rang.  It was Troy's cardiologist.  He apologized for the delay in calling, but there was an emergency at the NICU...which I completely understand.  He said that during conference, the team reviews all of the previous echo cardiograms in addition to the current echo cardiogram.  They measured the pressure in his tricuspid valve & it was unchanged from his last visit in February.  It was unchanged!  So this means NO SURGERY!  No intervention what so ever!  He can go back to taking his Lasix twice a day & has no restrictions (we had to stop PT).  Oh, what a relief!  I cried tears of pure joy & spent about 2 hours just praising the Lord & telling the devil to step off, to leave my son alone!  I also asked God to bless each & every person that has prayed for Troy, for without you all, I know this would've been impossible (I would've posted this earlier, but I wanted to tell Mack first)!  I KNOW that God stopped the devil right in his tracks...God told the devil that Troy belongs to Him, to back off!  I know that all of your prayers & the prayers of our families, our church family, & even acquaintances made this possible.  If you've ever doubted the power of God, this should be your affirmation that miracles can & do happen, if you ask & believe.  I thank you for your prayers, support, & concern.  Your prayers put a hedge of protection around my Troy!  Together we stood strong & firm & defeated the devil, but the battle is not over.    Please keep Troy in your prayers & may God bless each & every one of you!   

Matthew 21:22 "And whatever things you ask in prayer, believing, you will receive."  NKJV
Mark 11:24 "Therefore I say to you, whatever things you ask when you pray, believe that you will receive them, and you shall have them." NKJV
Matthew 18:20 "For where two or three are gathered together in My name, I am there in the midst of them." NKJV

Monday, May 23, 2011

This & that

     Troy had an absolutely AWFUL night last night!  He was up every hour all throughout the night.  I was thinking it was his tooth bothering him, but the Tylenol wasn't doing the trick.  I just hope it's not his heart causing him to be so fussy.  He seems okay this morning & is playing & eating fine. 
     Today is the day that the cardiac team makes the decision about Troy's plan of care.  We should hear something sometime tomorrow.  This waiting, wondering, worrying is so hard!
     My wonderful husband started his first shift job this morning!  :)  It was so nice to be able to spend the entire day yesterday with him!  He usually has to sleep on Sunday afternoon/evening because he had to be at work at 10 p.m.  But now, we get to spend each & every Sunday together & we also get to share a bed...YAY!  We'll be on the same schedule, finally!  I wanted to get up & fix him breakfast & fix his lunch, but I didn't get hardly any sleep last night with Troy. 
     Chancey is enjoying his 'summer' break, so far.  He's going over to his best friend's house this afternoon to hang out....he really misses his friends at North Hall.  I wish he could go back there, but Johnson has the program he needs to be in for his career path.  Plus, we're just a few miles down the street, he can always hang out with them after school, on weekends, & this summer!  He wants to get a job over the summer, but until we know what's going to happen with Troy, he can't apply for one.  I can't be here & at CHOA @ Egleston at the same time...plus, he'll want to be with his brother. 
     Please keep Troy in your prayers...it's not too late for a miracle!  :)