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!"

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!  :)