2010...............

10, 9, 8, 7, 6, 5, 4, 3, 2, 1!!!!!!!!!!!!!!!!!




May you and your family be richly blessed this year!!!!

Christie

WoooHooo...........got me a hot date tonight!

So tonight I have a hot date with my hubby, a soldier and a great gal. I am super excited that while Bill is home for some R&R that we get to spend some (more) time with him and April on their 16th wedding anniversary no less.

Shawn and I celebrated our 3rd wedding anniversary on December 16th and tonight, December 18th, Bill and April will be celebrating 16 years together. I am so happy for their family Bill is home for the holidays and their anniversary this year. He will head back out in about 2 weeks to finish his tour and be home next year in time for my birthday. I have told him that is all I want, I want Bill Watson back home, safely in the States for my birthday.

Once Bill gets home, he and Shawn are taking a trip to the Black Hills on their Harley's. They are also starting up an Indiana Chapter of the Warrior Brotherhood MC for vets. This is really quite cool. Bill will be president and Shawn his V.P. I am officially married to a biker in a club! LOL I never in a million years expected I would be married to a club-man but I am proud to say my husband will belong to the MC that is all about brotherhood and supporting the armed forces. How cool is that? Bill is waiting for his colors to arrive to have pics taken overseas with them on his cut. Shawn ought to get his soon too. They are screening for the other founding members right now too.

Enough about the MC.......my sister is going to watch the kids for us tonight so we can go out. Thank goodness, I think everyone is healthy. Joseph began therapies this week after not having any for the past month. He took to DT just fine, fought with Sarah for ST and thus wound up in his high chair to complete therapy (LOL), did fabulously for Megan during PT and LOVED having "his" Kim here today for OT. I am amazed at this little guy. Joseph is already holding his pen/pencil/crayons in a tripod hold at just 29 months old. Jared did not do this, consistently and well, until he was nearly 4 and half years old.

Jackson loved being able to have therapy too; he always edges in during Joseph's therapies. Everyone is great about letting him get some therapy time too. LOL The big kids start Christmas break today. I am hoping we all stay healthy over the holidays........that is all I want, Santa!!!

Joseph's story written by Grandma Janet

.............wouldn't that be a wonderful story to read?

How about Jared and Jackson's or Joshua and Janae's story written by Grandma Janet?

Sadly, I will never know this story. You will never know this story. I was just visiting Bill and Ria's blog and saw they have Matthew's story (he has T21 too) and it is written by his Grandma. I stopped short of reading it, I am not ready to read a story by Grandma.

My mom, will be 53 years old in just 16 days. I have not celebrated a birthday with her in 16 years (she passed 15 years ago just 4 months shy of her birthday that year). I miss her today. Really, really badly.

Life is not the same without her here. Grandma Janet never knew any of her grandbabies. She never met the little girl who is her name sake, and coincidentally looks and AWFUL lot like her. I HATE that. I don't HATE much (besides Peter Singer) but I HATE that she never experienced the love of her grandbabies. She never got to see me nursing or Geneva nursing and probably rile us because we did not bottle feed or start our little ones on baby food until they were 8 months old. She would have found it funny that I cloth diapered for so long. But most of all she would have LOVED all of her grandbabies with a fierceness that would make them so very loved.

Cancer sucks. I HATE cancer too. I want my mommy. I really, really, really do.

A Soldier's Christmas

I found this on my friend April's facebook page. Her husband, Bill Watson, once a Marine and now an Army man in the reserves, defends our freedom in Afghanistan. I cried when I read it and knew I had to share. I hope you are touched by this as I was. God bless you wives of soldiers, parents of soldiers, family and friends of soldiers and above all GOD BLESS THE SOLDIERS!!

TWAS THE NIGHT BEFORE CHRISTMAS,
HE LIVED ALL ALONE,
IN A ONE BEDROOM HOUSE MADE OF
PLASTER AND STONE.
I HAD COME DOWN THE CHIMNEY
WITH PRESENTS TO GIVE,
AND TO SEE JUST WHO
IN THIS HOME DID LIVE.
I LOOKED ALL ABOUT,
A STRANGE SIGHT I DID SEE,
NO TINSEL, NO PRESENTS,
NOT EVEN A TREE.
NO STOCKING BY MANTLE,
JUST BOOTS FILLED WITH SAND,
ON THE WALL HUNG PICTURES
OF FAR DISTANT LANDS.
WITH MEDALS AND BADGES,
AWARDS OF ALL KINDS,
A SOBER THOUGHT
CAME THROUGH MY MIND.
FOR THIS HOUSE WAS DIFFERENT,
IT WAS DARK AND DREARY,
I FOUND THE HOME OF A SOLDIER,
ONCE I COULD SEE CLEARLY.
THE SOLDIER LAY SLEEPING,
SILENT, ALONE,
CURLED UP ON THE FLOOR
IN THIS ONE BEDROOM HOME.
THE FACE WAS SO GENTLE,
THE ROOM IN SUCH DISORDER,
NOT HOW I PICTURED
A UNITED STATES SOLDIER.
WAS THIS THE HERO
OF WHOM I'D JUST READ?
CURLED UP ON A PONCHO,
THE FLOOR FOR A BED?
I REALIZED THE FAMILIES
THAT I SAW THIS NIGHT,
OWED THEIR LIVES TO THESE SOLDIERS
WHO WERE WILLING TO FIGHT.
SOON ROUND THE WORLD,
THE CHILDREN WOULD PLAY,
AND GROWNUPS WOULD CELEBRATE
A BRIGHT CHRISTMAS DAY.
THEY ALL ENJOYED FREEDOM
EACH MONTH OF THE YEAR,
BECAUSE OF THE SOLDIERS,
LIKE THE ONE LYING HERE.
I COULDN'T HELP WONDER
HOW MANY LAY ALONE,
ON A COLD CHRISTMAS EVE
IN A LAND FAR FROM HOME.
THE VERY THOUGHT
BROUGHT A TEAR TO MY EYE,
I DROPPED TO MY KNEES
AND STARTED TO CRY.
THE SOLDIER AWAKENED
AND I HEARD A ROUGH VOICE,
'SANTA DON'T CRY,
THIS LIFE IS MY CHOICE;
I FIGHT FOR FREEDOM,
I DON'T ASK FOR MORE,
MY LIFE IS MY GOD,
MY COUNTRY, MY CORPS.'
THE SOLDIER ROLLED OVER
AND DRIFTED TO SLEEP,
I COULDN'T CONTROL IT,
I CONTINUED TO WEEP.
I KEPT WATCH FOR HOURS,
SO SILENT AND STILL
AND WE BOTH SHIVERED
FROM THE COLD NIGHT'S CHILL.
I DIDN'T WANT TO LEAVE
ON THAT COLD, DARK, NIGHT,
THIS GUARDIAN OF HONOR
SO WILLING TO FIGHT.
THEN THE SOLDIER ROLLED OVER,
WITH A VOICE SOFT AND PURE,
WHISPERED, 'CARRY ON SANTA,
IT'S CHRISTMAS DAY, ALL IS SECURE.'
ONE LOOK AT MY WATCH,
AND I KNEW HE WAS RIGHT.
'MERRY CHRISTMAS MY FRIEND,!
AND TO ALL A GOOD NIGHT.'
This poem was written by a Marine.
The following is his request. I think it is reasonable.....
PLEASE. Would you do me the kind favor of sending
this to as many people as you can? Christmas will be coming
soon and some credit is due to our U.S. service men,
women, and Canadian Forces for our being able to celebrate these festivities.
Let's try in this small way to pay a tiny bit of what we
owe. Make people stop and think of our heroes, living and
dead, who sacrificed themselves for us. Please, do your
small part to plant this small seed.



Thank you April and THANK YOU SO VERY MUCH BILL!! I LOVE YOU MAN!!!

Our tree is up............

Geneva and the kids put the tree up last night. I believe they all had a nice time. But not after I got thoroughly disgusted cutting and ripping the pre-hung lights off the tree. We had one whole section that was DEAD. So, we decided to pull them all off and string it up the old fashioned way. I will NEVER again buy a pre-lit tree. Granted I have had this one for like 4 years or so and the lights just died this season...but that was a serious PITA to deal with.

MERRY CHRISTMAS ALL!! Here is a preview of the snowman Jared drew that I hope to use for our family Christmas card this year.

I don't want to!!!!!!!!!!!!

For the life of me.

I. DO. NOT. WANT. TO.

I never want to read of another child who has gone to heaven. I just don't. It breaks my heart and I don't even know these people. Just this past week, less than one week before Thanksgiving, one of the mom's on our Down syndrome Babycenter group, Emily, lost her sweet, gorgeous, blue-eyed, baby girl. Gabrielle had gone in for open heart surgery and died from complications within 2 days of her surgery.

Doctors have no idea what went wrong or why. Emily's family, which includes two other children and her husband, are left to grieve their precious baby girl. An angel on loan, and one I will not soon forget. Emily had recently posted a picture of Gabby on October 23, 2009 she was 14 weeks old in the picture. I am going to post that picture here to share with you all.

Please keep this family lifted in prayer. I do not know what state they are in or even all of their names. But if you are a prayer warrior, I know they will appreciate your prayers.I cannot tell you how many times I have hugged my boys since I read of Gabby's passing on Friday.

IT. IS. SO. NOT. FAIR.


Christie

Sometimes............just sometimes............

I become overwhelmed with guilt. Why? Because raising Joseph has been so easy. Really. Really. Easy. Sure we have had bumps and bruises along the way but nothing drastic. Nothing catastrophic. No heart surgery, no tummy surgery, no hearing issues, no apraxia, no feeding issues. Nothing. It is rather boring actually and other than therapies it has been quite routine; I cannot say normal because what the heck is normal anyways?

He is making strides that our neurodevelopmental specialist has rarely, if ever, seen before. His IQ is gaining and is the range of a typical childs. His speech is abundant for his age. His dexterity and fine motor skills are just 6 months behind for his age. His muscle tone is great, He is walking now, climbing, stepping and working on running (though he only practices in his crib...........crazy kid). I am bragging and I know it and I feel guilty from time to time as well. So many kids with Ds struggle in many areas that Joseph never got the Ds memo on. Why? Why are we so different? Our epileptologist, Dr. Pappas, even told me if he saw Joseph out and about he would not peg him as a child with Down syndrome. And we have heard that his whole life............how is that? He looks like a child with Down syndrome. He is short of stature, walks with a funny gait, has a small head, almond shaped eyes, flatness to the back of his head.

I am not wearing rose tinted glasses. My son has Down syndrome, his brain is not what it should be if he were a typically developing child, his development is slowed, yet he is excelling in sooooo many areas. He is a wonder, an amazement, a cherished gift. He is proof in the pudding that you should NEVER put limitations on your child. You open the world up for them and let them amaze you. That is what as parents we should do. I don't dwell on his Down syndrome. I was commenting to mom on the Down syndrome board on Babycenter just the other day whose friend had told her she was too focused on her own little one's diagnosis, and I told her "Down syndrome is a speck in our lives not a boulder in our pathway." Is this why Joseph excels; because Down syndrome is truly an afterthought in our house? Or is it that he is just bursting with capacity right now that will deflate as time goes on?

I really don't have the answer to these questions, but I do know I struggle with them. Not one of my kids has followed the standard of what you would expect from them. Jared is advanced in speech and reading and has been since he began talking at 9 months. Jackson is like a little old man, very aware and soaks in all that is around him but his is my most typically developing child. And then there is Joseph who is more typical than he should be (according to stats) because of his Down syndrome. All my kids missed their apparent memos and that's ok. But the guilt is still there. My heart aches for the moms and babies that must endure the surgeries and I thank my lucky stars I am not one of them. Because I could be, at any given moment I could be with any of my kids. But for today, I will revel in the wander that is my kids and be content with just that.


Until next time, love your babies and never place them in the proverbial box, open the world to them and be amazed.

---Christie----

Any math lovers out there?

My facilitator at IWU, Debra Lewis posted this today and I thought I would share it here.

From a strictly Mathematical Viewpoint:

What Equals 100%? What does it mean to give MORE than 100%? Ever wonder about those people who say they are giving more than 100%? We have all been in situations where someone wants you to give over 100%. How about achieving 101%? What equals 100% in life?
Here's a little mathematical formula that might help you answer these Questions:

If:
A B C D E F G H I J K L M N O P Q R S T U V W X Y Z
Is represented as:
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 1 9 20 21 22 23 24 25 26.
Then:
H-A-R-D-W-O-R-K
8+1+18+4+23+15+18+11 = 98%
and
K-N-O-W-L-E-D-G-E
11+14+15+23+12+5+4+7+5 = 96%
But,
A-T-T-I-T-U-D-E
1+20+20+9+20+21+4+5 = 100%
AND, look how far the love of God will take you
L-O-V-E O-F G-O-D
12+15+22+5+15+6+7+15+4 = 101%

Therefore, one can conclude with mathematical certainty that:

While Hard work and Knowledge will get you close, and Attitude will get you there, it's the Love of God that will put you over the top!

How's about a little 101% today?

Charles Joseph Young

Ahhhhhhh, my grandpa. Grandpa Joe, Grandpa Hippopotamus, old man, pops, the mighty Joe Young, Joe the jailer, soldier, mason--the old guy has gone by many names but he is simply Grandpa to me.

He is now 89 years old (celebrated his birthday on October 5th). He had a great birthday, lots of friends and family around him. Mason brothers came to see him, my cousins even came in their Mason funny cars and drove around for him. The old man ate it up!

I remember days of camping out at Beaver Point with him, driving his old van (shag carpet, bed and all!) that was eventually my dads, he bought my first car for me with a loan to me that he wouldn't let me pay back. My middle son is named after Grandpa (and Jackson is named after Shawn's grandpa). Today, I realized how much Joseph looks like Grandpa. Little Joe (as my dad calls him) looks much like the short old man that I remember as being ornery and hard nosed at the same time but loved me with all he had to offer. And I am glad he did.

He has not always been the best man but he has always my Grandpa and that is what matters. I am proud of the mighty Joe Young, today he told my dad that he was proud of him and that he loved him. And like my dad said, "I guess it doesn't get any better than that." It's true. Love and pride from a parent makes all the difference in the world.

Go in peace, Grandpa. Be blessed in the sight and glory of God. I pray your entrance to Heaven is gentle and your suffering short from this time forward.


I love you...........

Pray, as hard as you can; PRAY!

This sweet child needs a forever home, NOW!! My heart aches for her and all the children at Reece's Rainbow



Lera (4)

Girl, Born August 7, 2005

Russia
SIGNIFICANT RISK, PLEASE ADOPT ME SOON!

Lera is a gorgeous little girl with blonde hair and blue eyes. She is 4 years old. She is quite high functioning, and doing very well. She has flat feet and a systolic heart murmur, but no major heart conditions. She is able to walk and climb, she eats by herself, dances, and understands and follows directions. She has also been transferred to the regular class, so she is living and learning with her typical peers.

She will be transferred soon to a place she can not be adopted out of, so please save Lera! Sadly if she is not placed in her forever home soon, she will be left to die, ignored and unloved. Robbed of her life.

SMA do you know what this is?

Spinal Muscular Atrophy and Cassandra Byrd's twins, Kyle and Lauren, were born with SMA Type 2.

I met Cass back in 2007 during the latter part of my pregnancy. I joined the June/July 2007 mulitples pregnancy board on the old babycenter.com and that is where I met her.

She doesn't know it but she is my idol! LOL Cass, had trouble baking her first baby, Jenna, and delivered early. Well, the twins taxed her body, she wound up in the hospital, on bed rest and worse of all on Mag........MAG is AWFUL. She will certainly attest to that.

I had my own rounds with preterm labor beginning in April/May 2007 and got repeated shots of Terb. Nothing at all like Mag but I hated the damnable shots just the same. Anyways, Cass beat me. She delivered a couple days sooner than I did BUT she carried Kyle and Lauren LONGER than I did and LONGER than she carried Jenna too. She was even able to nurse her twins (for a LONG TIME........I am secretly green with envy!).

See, I was hit with a medical diagnosis for Joseph straight out the gate. We learned within hours of his birth that he was hypotonic (low muscle tone) which comes with Down syndrome. Cass and her husband, Chris, learned one year ago TODAY the twins had SMA. This is part of their story, won't you read it and check it and drop some money their way to put and END to SMA?

Click on this link and it will take you to Cass' blog..........BahamasBahamasBahamas. What a mantra!


Til next time...........love your babies and count your blessings.

Alex the Great

I first read about Alex in the first installment of the book, Gifts: Mothers reflect on how children with Down syndrome enrich their lives. At that time I had no idea, in the years to come, I would learn more about Alex and even become a nettie (my term for an internet buddy) to his mom, Nicol.

This boy, excuse me, this man just celebrated his 18th birthday. Over the past two years I have gotten to see some recent pictures of Alex and hear about some of his activities. I am drawn to this young man. Like a moth to a flame, I cannot help myself. I revel in his triumphs and love to hear of the things he is doing. Seeing pictures of him, doing exactly what a teenager should be doing makes my heart sing. It is just one more notch to help confirm that people with Down syndrome MATTER. They can live good lives, they can be happy, they can be contributing members of society. The montage Nicol created shows the LOVE and ACCEPTANCE he has known his whole life.

Here is the link to Alex's 18th Birthday Montage (I cannot put the whole thing here because I cannot re-size it to fit my page).

There is no denying it, Alex is a handsome young man. I love looking at him even more so because when I look at him, I can see Joseph in 15 years. Normally, I cannot see Joseph as a young man in my mind's eye but when I see Alex, I see Joseph. And I thank Nicol for sharing him with me. She has given me a gift in the pictures she has posted. And now I would like to share that gift with you. Thanks, Nicol for letting me share this.


Christie.......momma to 3 special boys (one of whom just happens to have 47 chromosomes)

PLEASE DONATE to the Flege Family Auction.

CJ's auction for the Flege Family

Please click on the about link to see the auction CJ has going for Amy and Mike Flege. I will now plagiarise CJ's blog and repost the beginning of her post for the auction. :o)




Amy and Mike/Stacy have been married almost nineteen years. They have three children.

After losing his job last year before Christmas, Mike/Stacy was finally able to get another. It wasn't easy catching up, but the family manages to live on one income while Amy takes Mayson (who is enhanced with Down syndrome) to therapies, doctor appointments, etc.

Unfortunately, Mike/Stacy's new job does not offer any vacation or disability, etc. Therefore, while he recovers from his open heart surgery, the family will have no income!!!

Can you say stress???

This family is typically the ones on the giving side of life, so it's been difficult for them to accept being on the other side of things. They are greatly appreciative for their community and friends during this time.

Let's show them the love and support they've shown others over the years!

Here's how it works...there is a button under each item. Bids for each item can be made in increments of one dollar. For each dollar an individual donates, their name goes into "the pot" one time. The winner will be determined by Random.Org. The more dollar donations you put towards an item, the more likely you will be to win that item!

All proceeds are donated to The Flege Family to aid them during Mike/Stacy's recovery from open heart surgery.



Please, even if you cannot purchase an item, would you consider donating an item or even just a couple dollars? Every little bit will help.

Let's show the world what love and support are all about!!

Would you?

I have three boys. Two of them have 46 chromosomes a piece and one of them is sporting 47 chromosomes. Yes, one of my boys has Down syndrome or Trisomy 21 meaning he has 3 copies of the 21st chromosome.

One son is handsome, charming, stubborn, genuine, unique, talented, farsighted, loquacious, witty, easily entertained, softhearted, levelheaded, loving, dishwater-blond haired and blue eyed.

One son is handsome, charming, stubborn, genuine, unique, loquacious, witty, easily entertained, softhearted, levelheaded, loving, can melt your heart with his smile, blond haired and blue eyed.

One son is handsome, charming, stubborn, genuine, unique, loquacious, witty, easily entertained, softhearted, loving, a copy-cat who loves to do what the big kids are doing, brown haired and hazel eyed.

Can you guess which child is which? Who is Jared, which is Joseph, and then who is Jackson. See I don't see the Down syndrome as a descriptive of my son. Some people do and I reckon that is okay; if he must have a label in life it might as well be Down syndrome. Jared is often labeled four-eyes and an advanced learner. He began talking at a very young age. Speaking to him at age 2 was like carrying on a conversation with 5 year old, it was nearly freakish looking back on it I can see that. But at the time, I did not realize how truly odd that was. Jackson? Well, he is labeled the curmudgeon in our household. He is like a little old man trapped in a toddler's body. So, that leaves Joseph. Joseph is my cherubim, my angel, my sweet-souled child that will NEVER become jaded like the rest of us do. His personality, his heart, and yes, his 47th chromosome won't allow it and neither will I.

Some might say I have rose-colored glasses on. Whatever. My life is MY LIFE, I know what I live and I know what I teach my kids. My oldest, Jared, the farsighted one is often picked on at school because he simply does not relate to the kids his age. His mind is ahead of theirs but his lack of maturity won't let him meld with the older kids. It is tough, he does cry about it from time to time and I hate it for him. I hate the idea that someday, someone will say hurtful things about Joseph and his cognitive abilities. I hate that someday, someone will say hurtful things to Jackson about his brother and tell him they cannot really be twins because they are so very different (when in fact they aren't that different at all). The world is full of haters, nay-sayers, and those that don't believe in treating everyone the same.

I do believe in treating them all the same and that is why I can see the beauty and handsomeness in all my boys. They are gorgeous little men who will someday be gorgeous men no matter what some people may think. So I guess my whole rambling here is about whether or not you can see past the 47th chromosome that belongs to the child I see as the one son that is handsome, charming, stubborn, genuine, unique, loquacious, witty, easily entertained, softhearted, levelheaded, loving, can melt your heart with his smile, blond haired and blue eyed? Would you?

(by the way, Jackson is my brown haired kid with hazel eyes and, therefore, Jared is paired with the first descriptive)


Until next time, hug your babies and never take for granted the blessing in your life.

Christie

Buddy Walk 2009!

So we finally made it to our Buddy Walk!! I guess third time really is a charm. The first year the twins were born it was very cold and damp and we did not dare take them out in that type of weather. Last year, I think someone was puny. But we finally made it this year. My sister, nephew and niece came along too. Jared was with his dad this weekend so he did not make it, but Shawn and I brought the twins out anyway. The weather was GORGEOUS!! Jackson was good but had a tummy bug of some sort and ran a fever that evening. Joseph woke up very snotty this morning. His poor little eyes were very watery yesterday but they always do that when the wind is in his face. Hopefully, we are all just getting a little cold now and nothing major. Here are some of the pics from this years walk.

There are good people in this world.

This video has recently gone viral on youtube.com, meaning it is getting LOTS of views.

A young freshman, 15 year old, Matt Ziesel is going to score a touchdown. A touchdown? Who cares, right? Well, you see, Matt has Down syndrome and even though he suits up for every game he has never gotten the chance to take to the field before this game.
His team was taking a whoopin'. The opposing team was ahead 46-0. In the final moments of the game, while the defense was in their last huddle, Matt's coach went over and asked if they would be willing to run a play that would ALLOW Matt to run in for a touchdown.

The coach agreed. And here is the end result, there are good people in this world. I love that you can hear everyone cheering Matt on as he runs in a 60+ yard touchdown.

Choosing Thomas................choosing life

Choosing Thomas is a video documentary telling the story of Deidrea and T.K. Laux and their decision to birth their child. Thomas was born with a fatal trisomy, Trisomy 13, meaning Thomas had three copies of the 13th chromosome. Trisomy 13 is not compatible with living a long life. Many babies born with T13 pass away within hours of being born. Thomas' life was short, but undoubtedly full of love.

In today's world where pregnant women are offered tests to show whether their child will be born with 46 chromosomes (or more or less) and then given the option to terminate, this video is a beacon in the darkness of the abortion statistics. This family chose to birth the child they were blessed with. Blessed? Did I really just type that? Yes, yes I did.

Blessed because they were given a child, blessed because they birthed the child, blessed because they were able to hold that child, blessed because they will have memories of that child, blessed because they loved that child, blessed because THOMAS was loved by them.

The woman who elects to abort will NEVER know these blessings. Her loss is essentially the same, yet she will have no comforts, no blessings. She alone will be haunted by the decision. She will be haunted by the what if's. She will be haunted by the face of the child she never saw. She will likely be haunted by the decision made in the light of the medical world's tendency to tell mom's it is okay to terminate a child they consider to be less than perfect. How do I know if these statements are true?

I have never terminated a child. But my mom terminated a child. I would have a brother or sister about 4 years younger than myself. She did not terminate for medical reasons. She simply did not want nor could afford the child. For the family members reading this who did not know about this, I apologize that you are reading of this for the first time here. But I can say, mom regretted this decision. She wondered about this baby. She was indeed haunted by her decision, made as a single woman pregnant and alone, to terminate her pregnancy.

Abortion is abortion, no matter the reasoning behind it. Abortion stops a beating heart. Abortion leaves an open wound not easily healed. I wish more people were like the Laux family, willing to love the child they are blessed with. I wish more women were not like my mom and were willing to accept the child they were blessed with. I wish abortion did not exist. I wish more families would choose their "Thomas". Here is their story. Get your tissues ready, it runs about 9 minutes and though Thomas is gone to heaven. The Laux family has been blessed again and are expecting a baby girl in January 2010.


Until next time, love your babies and count your blessings. Even the stuff that does not seem to be a blessing IS a blessing.

Just to share

Pain and suffering are inevitable but misery is optional.

These words are true and I am grateful to have had them shared with me this past Saturday by a man named Mike Schlappi. Mike is a wonderful motivational speaker. Check his website at http://www.mikeschlappi.com and here is a video to share

Remember, God won't give you more than you can handle.......

Why do people say this? This is one saying that drives me batty. Nowhere in the Bible does it ever say that God won't give you more than you can handle. In fact, my Bible tells me pretty much the opposite.

The verse that is often misconstrued is 1 Corinthians 10:13 (NIV) which reads, "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it."

Truth is God gives us more than we can handle on our own all of the time. The Almighty Father does this so that when we finally wake up and realize we CANNOT do 'it' without HIM, we will RUN to him for our support so we will rely, fully rely on Him. It is not easy but then growing pains and labor pains never are.

We can find comfort in our trials in the arms of the Lord. When the money is tight and eviction notices fly, when the bills are mounting and the liquor no longer numbs the pain, when nothing seems to go right; if we can just learn to lean on the shoulders of the one true God we can find comfort.

Finding comfort does not mean it won't be hard and comfort does not mean it won't hurt. Comfort means peace. Jesus is the Prince of Peace. Come to Him; He is waiting. Arms open wide, He is waiting.

Can you see it?

There is beauty in almond shaped eyes, the flatness of a nose, the ears that droop, the smile that glows. There is joy in waiting, there is joy in triumph, there is joy in hard work. There is worth in my child with Down syndrome.

I wish everyone could see that. My heart is sad today, because some woman, somewhere, is struggling with the decision to abort her child with 47 chromosomes. My heart aches..........

Jared is nearly 7

Exactly 24 hours from when I begin the post, my baby boy will officially be 7 years old. Jared was born on a Sunday evening, at 20:22 to be exact. He weighed 7lbs. 7 oz. and was 20 inches long. My labor was short and uneventful. And within hours we were in our room together.

Jared was a great baby, very laid back, wonderful nurser and loved to be cuddled. He has grown quite a bit since then. He is now some 50 inches tall and is 10 times heaver than when he was born. He is smart as whip and pushes my buttons daily. We butt heads often.

But as I type this now, I am reminded of the little baby who was born nearly 8 years after his Grandma Janet went to heaven. I cannot believe my mom has been gone for 15 years. It stinks, but life does go on. At least for us it does. I was reading the tribune today and seen there was an obituary for a 5 month old. A baby boy, Gabriel Goshern, I knew his daddy. I grew up with him. I cannot imagine what Stevie (Stephen is what he goes by now but I cannot bring myself to call him that) is feeling. An angel on loan, here for just 5 months and 2 weeks. Unreal. Simply unreal to me.

I am so blessed to have my live born babies still here with me. The child I miscarried at nearly 16 weeks was never born, and while I grieve that loss, I cannot fathom having held my child and then lose them forever. I have met families through online connections who have lost their children. My heart weeps for them.

I cannot, nor do I wish too experience, imagine the pain a mother's heart feels when her child is taken from her. To never again smell the sweetness of that child, never again see their smile, never again hear their giggle, never again feel their tiny finger grasp your pinky and take your breath away. I cannot fathom. May God hold them all closely.

I was talking with a friend, I hope I can call them that, I have only met them once in person. Told me that the things one writes or says can affect a person in ways they will never know and to keep doing what I am doing. I thank them for that gift, a gift of encouragement. I needed that. We all do from time to time. So for my friend, until next time....

Love your babies, hug your friends, and never doubt that someone, somewhere is watching and listening.

Family and epilepsy update........

Hello, everyone!!! St. Vincent's called today to schedule Joseph's video EEG to indeed find out if the activity we are seeing is seizure related or not. This is a 24 hour hospital stay at Peyton Manning's Children's Hospital; Joseph will be hooked up to an EEG machine as well as have a video camera on him at all times. He will not be allowed to leave his room at all since we are video taping this time around.

We are to be at St. V's at 12:30 on September 3, 2009. I will be taking lots of videos and books to keep him occupied with. Thank goodness he LOVES his books.

Otherwise, he is doing fantastic. He is walking unassisted probably 75-80% of the time now and is soooo cute when he does it. He has also mastered the step UP from the dining room into the kitchen. He practices all the time. His verbal ability is still growing at a fantastic rate and now we are working on Mommy, Daddy, baby (with focus on the ending long e sounds). He says Ma-Ma and Da-Da and Buh for baby but we need to keep pressing on and work on annunciation. He can say more now and not just muh while signing it.

Jackson is the funniest little man-child I have ever seen. He is such an imitator and loves to do whatever the big kids are doing. BUT he has developed a cutesy thing now that we really need to break him of. This past Saturday while I was at the Nickelback concert and he spent the day with Daddy he started doing this. What is this, you ask? Well, see, if Jackie gets corrected for something or spoken firmly too, he will sing "Doot-doot-doo" back at you! Daddy thinks this is hilarious of course so now he is doing it all the time when he is corrected!! But it is pretty stinkin' cute!

Jared has started 1st grade at NES and is doing well. His teacher is Patti Elliott and I really like her. Jared is reading at the 3rd/4th grade level already is probably the most advanced in reading in his whole class. Tonight he starts Karate again, he is excited and Sensei Donnie is glad to have him back.

I think that pretty much covers what is going on in our household, just one more thing. Please keep our soldiers in prayer. There is an election coming up in Afghanistan and it is sure to get rougher on our men and women in uniform. Pray for their protection, please.

Until next time!!

All my kids are special and I LOVE Joseph's Designer Genes!!!!!

Down syndrome Awareness~~~BuddyWalk 2009~~~

A brief moment with a soldier........

Yesterday, I was able to share just a few minutes online with a soldier. This truly made my heart smile.

See, this soldier is also a dear friend of our family. His name is Bill Watson and he is fighting for our freedom today. Bill is also a husband and a father to a child with special needs. Allie, his baby girl, has Autism. Allie is verbal but limited in her verbal communications. She is a bright-eyed young lady who loves her daddy very much. And wouldn't you know it, when Daddy is able to use Skype for a video phone call, she talks to Daddy! And I will have you know Bill LOVES this.

Hearing his baby girl talk to him over the video phone call from literally thousands of miles away sustains his soul. Bill told me he 'needs' to talk to and see his baby girl. Don't get him wrong; he loves his wife April and his son Trevor...............but Allie? Well, if you have a child who does not verbalize often but does when she sees Daddy on the computer............How can that make your heart soar and sustain your soul until the next time?

As humans we take for granted all the "will be's" with our children. It is natural. We never hope for or expect a child with special needs or a disability. But when it happens, your world is changed; sometimes, your world is rocked to it's core. It is what you do with this blessing that will define you for the rest of your life.

Not everyone sees our kids as a blessing. Shamefully, often times, society sees our kids a burden, a pity, a blight in the unattainable perfection of what children are supposed to be born like. I cry for these ignorances because I know with every fiber of my being that every child is a perfect gift no matter their abilities.

If you are a new parent of a child with a disability and are struggling with the reality that is now your life; give yourself time. Grieve if you need too, yell if you need too, purge your heart and soul of any bitterness that you may experience. Then LOVE your child. LOVE this child with a fierceness you never knew you had in you. LOVE them and you will see your child. YOUR CHILD is a child first with a diagnosis medically placed on them. Advocate for your child, teach them all you can, never put them in a box, never underestimate their abilities, set the bar high for yourself and never stop achieving. Advocacy is my life now, it is the passion I never had the courage to chase until my son, Joseph, was born with Down syndrome. I love all of my boys, they are all special and I LOVE my son's Designer Genes. His life is not a burden to me, his life is the catalyst that set my life in advocacy in motion. Without him, I still would not know what I wanted to be when I grow up! LOL


Until next time, love your mommas, pray for our soldiers and relish in the sweetness that is your children.............

Ties That Bind, Connections In The Down Syndrome Community

What a wonderful idea and true to the heart concept.

I have the privilege of being in an elite group, a family if you will. A family tied together by the 47th chromosome. A family filled with members born with Down sndrome and I love it! Because of my blessedness in this family, I have come to "know" a great gal in cyberspace, CJ the mother of two kids and one of her kids has Down syndrome.

I wanna tell you all about something very special CJ is doing and help spread the word about the T21 Traveling Afghan Project. On CJ's blog about the project she say's "There is a very special blanket making it's way from one family to another all over the world.The common tie? Down syndrome. Each family who receives the afghan for one week has a member with T21. They get the blanket, take photos with their family and pass the blanket (and an accompaning journal) on to the next recipient.One blanket. Fifty US states. Many countries. Hundreds of families. One common thread!" You can click on the T21 Traveling Afghan Project widget on my sidebar to get to the blog or you can click here http://www.thet21travelingafghanproject.com/

CJ knitted the afghan herself and has been recruiting families to send the afghan to and in return each person is to send pics back to CJ to put on the blog page. A wonderous journey for an afghan and each family. It is true, families like ours, are indeed tied and knitted together forever.

Once Joseph was born my world has been expanded. My mind has been opened and my heart has been overfilled with joys of raising my child with Down syndrome. There is a joy in raising a child such as mine. There is a heartache that comes with that joy as well in the realization that there people who see my child as imperfect and unlovable.

CJ has opened the lines and shown us all what love is. Love is an afghan knitted with a purpose. A purpose meant to show each and every person that we are tied together, we are loved, and through the journey of the T21 Traveling Afghan we get to experience that love. So, if you know a family who loves someone with Down syndrome or your family has someone with Down syndrome in it; check out the T21 Traveling Afghan's blog by clicking http://www.thet21travelingafghanproject.com/


So come on! Join up, spread the word (bombard Oprah with this story!) and hey if you want an afghan of your own you can find out how to get one by clicking on "an afghan of my own" button on the T21 Traveling Afghan blog's sidebar or clicking here
http://www.thet21travelingafghanproject.com/2009/03/afghan-of-your-own.html


Until next time, love your babies, hug your momma and blow bubbles in the park!

It's my birthday............

So today, I have turned another page in the yearbook of my life. I am now 35 years old. I am also a college graduate, continuing her studies beginning in September. I am a mom to three fantastic boys, who sometimes drive me absolutely wonky. I am a wife to wonderful man; it is hard to believe that just three years ago this week decided to "date". I am a daughter-in-law to the sweetest lady and great man.

See, many woman (or so I've heard) have a rough go of it with their mother-in-laws. Not me, not with Diana. Oh, I've had my fair share of not getting along with my ex-mother-in-laws that I have had. It wasn't all bad, don't get me wrong. I still have a great relationship with my ex's mother but we did certainly not always get along so well. But Diana, if she ever had her doubts about me or concerns about Shawn and I; she never once made them known. And today I got the sweetest birthday card from her.

With my own mom passed away, I am not the warmest and fuzziest when it comes to other mother figures. I can be stand offish and I know this. Diana, if you are reading this, please know I am sorry if I have been this way with you. The card today, was so very heartfelt, I could nearly hear Diana reading it to me. The card is the wish of every mother raising a son. I could hear myself in the card with the boys later in life.

Now, it is no secret I have been married multiple times. I am not proud of that, but it is what it is. And I cannot change that now. I can live in the present and be thankful for all I have and all I am blessed with. I have never before had a mother-in-law tell me she was glad her son was married to me. Here is what the card reads:

For my daughter-in-law, I'm so glad my son married you.
I like to think I always knew
my son would marry a wonderful woman...
one who would be a partner and friend to him,
one who would inspire him
to dream and do his best,
and work right along with him
to make those dreams happen.
A woman with a wise and beautiful mind,
as well as a beautiful smile,
and an inner spirit strong enough
to soar along with him
when the sun is high in the sky,
and to weather tough times with him,
side by side.

Christie, you're all of those things
I hoped my son would choose,
and more...
he's so very lucky to have you for a wife,
partner, and friend...
and I'm lucky to have you
for a daughter-in-law.


I am so very grateful for the card from Diana and so far my day has been wonderful. I woke up to a quiet house at 6:20 this morning. Read my cards from Shawn and the boys. I got a new candle and a new deep fryer too. Got tons of birthday wishes from all my Facebook friends. Then I checked my mail and found this card too. I am a loved and blessed woman and best of all, I know it, I feel it. Thank you.

Seriously? Come on now people.

So a dear online friend has brought this to my attention now for the second week in a row; first Tara commented about it and now CJ has put her two cents in.

There is a group of "Christians" calling for God to "cure" Trig Palin of his Down syndome. Seriously? A national day of prayer to cure the former Governor of Alaska's son simply because he has a 47th chromosome? Hmmmphf. I would have thought maybe a day of prayer should be spent on curing one of the big three........CANCER, AIDS, or geesh, I dunno............LIFE? You know, life is the ONE affliction (if you are breathing and reading this) we all have in common and someday, yes someday, it will KILL every single one of us.


Do these supposed 'do-gooders' mean no harm? Probably, but too bad their ignorance has ignited a firestorm from those of us who, AMAZINGLY, LOVE our children who have Down syndrome. OH MY GOSH??????????? Can it be, can a person really be whole and loved even if they have Down syndrome? Why, yes, Beatrice, they can.

EVERY SINGLE PERSON ON THE FACE OF THE EARTH IS AS WHOLE AS THEY WILL EVER BE ON THIS EARTH UNTIL THE DAY GOD CALLS THEM HOME. My son is no less whole than I am, my neighbor is no less whole than me, the paralytic is no less whole than the blind man. Don't you see we all fall short of the glory of GOD and the penalty for those sins is death; therefore, not a one person walking, living, breathing on the face of this EARTH is whole. We all have a hole in our soul, caused by sin, that makes it impossible to be whole here on Earth. We will be made whole when we meet our maker face to face on that glorious day in Heaven. At that time, we Christian's will be made HOLY (the only real whole that matters) in the image of God.

Until then, save your prayers for the angels on loan her on Earth. Babies with SMA, whose bodies and muscles atrophy until they can no longer swallow and breathe, babies with MPS whose bodies cannot process enzymes correctly and must go through stem cell transplants only to be called home to Heaven after fighting so hard to live. Pray for our nation, our SOLDIERS, our family members stolen in the night. Pray for the babies and children who DO NOT know love; who are beaten for pottying in their bed at night. Pray for the babies who are thrown in orphanages simply because society finds them useless.


You see, my son (the one with Down syndrome) is LOVED. He DOES know life, love, friendship, kinship, and the joys of bubbles. And that my friend is what it is about. Would I have asked for a special needs child before Joseph? Most likely not, but now, if I had the resources, I would take in as many children with Down syndrome as I could possibly handle. I would love to show them all what love is. That is my prayer, that no child born with a society labeled disability would be unloved. We all deserve love. No matter our color, creed, ability, or beliefs. LOVE. LOVE is what is important not how many chromosomes you do or do not have.


I will exit my soap box now.........until next time, love your babies. Please.

Choo-choos, Potato Heads and books....oh, my!

This past week or so I decided to get out Jared's old Thomas the Tank Engines and flip his train table over so the train track side was upright. Jackson has been in "shoo-shoo" heaven ever since! Jackson LOVES his new "shoo-shoos". Joseph enjoys the table as well and gets lots of great standing time too.

And while Jackson loves his "shoo-shoo" there is a new love in town. Ah, yes, Mr. Potato Head. Sarah, Joseph's speech therapist, brings a Mr. Potato Head and baby Potato Head to use during therapy with Joseph. Once Joseph is done with Mr. Potato Head and is ready to move onto another task with Sarah, Jackson gets his turn. Instantly, Jackson was intrigued!! He played Tata with Daddy for nearly 40 minutes. So I decided it was time to buy Jackie his own Tata; my oh, my!! He loves playing with that but don't anyone dare put something in the wrong place for you will surely wreck his afternoon! So funny! Now today, he has begun to say "ca' me-uh" while opening and closing his hand to get you to follow him. Oh, YES!! He has learned to say come here and motion properly with his hand to get the result he is wanting. So what does he want? Well, mostly for Daddy to come play "shoo-shoo" in his room with him or for Daddy to get down on the floor and play Tata (Mr. Potato Head).

Not only is Jackson smitten with Mr. Potato Head but Joseph too! Or at least it seems that way since he is repeatedly kissing him!! It is precious and HILARIOUS all at the same time.

On to the books, Joseph has ALWAYS loved books. He will sit and look at books, let you read to him, find things on the pages. You name it, if it is in a book (even my God's Little Devotional Book for Moms) he probably is very interested. Jackson, not so much; or at least not until recently. Now if I am reading he too must come up on my lap to read the book with Joseph and me. BUT there is bigger news too where the book learnin' is concerned. Jared, my nearly 7 year old, is an avid reader and will only be in 1st grade in just 29 days. We are reading "Bunnicula" each night when it is time for bed. I am reading this to him but he has read three Level 2 reader books and one Level 3 book this week all by himself and only needed help with one word. I am in awe of his reading ability. I was never a reader as a child, nor am I today but I am grateful I am instilling this love in my boys. Now for your viewing pleasure...I present Joseph reading in his brother's bed.

North Miami Class of 1989 reunion

So my hubby has been out of school for 20 years!!! And we went to his reunion last night. I did not even know if he was going to make it there or not. He did not know "if he was up for it". I told him if you leave by 7:30, you can go home but you are going to drop me off in Converse and I was spending the night with Carrie! LOL

Well, Shawn and I have NEVER been out like this together. I knew absolutely NO ONE when we got there but of course as the night went on I ran into a couple people I ALREADY did know and made quite a few new friends too.

My hubby got schnockered (too funny I might add) and I? Well, I had a few beers and cut myself off 2 hours before we left so I could drive us home safely. I got to dance with friends to some great, and sometimes cheesy, 80's rock music. Like I said Shawn and I had NEVER been out like that together. He had never seen me "work" a room with my personality and he had never seen me dance with friends. He had never seen me drink even. We are not the party people. We don't drink at home, we don't drink ever really. Last night was a TREAT!!! It was so great to have adult conversation, cut loose and have a great time with friends.

Today, we went for a ride on the Harley and that was great too. We were gone for like 4 and a half hours. I, of course, am now sunburned and very tired. I have to take flexerils before we ride or my back cannot take it and now it has caught up with me.

I can say I don't miss my partying days but it was nice to revisit that atmosphere and cut loose and be carefree for a few hours. Now just 33 days to GIRLS NIGHT OUT at the NICKLEBACK concert!!!! ROCK ON!!!

So, for anyone from the Class of '89 at NORTH MIAMI~~~thanks for showing this gal a great time!!! Here is me and Shawn before he was schockered!! LOL

UPDATES & DONATIONS REQUEST

Joseph had his sedated MRI on Monday afternoon and on Tuesday evening the nurse from Dr. Pappas' office called. I was not expecting to hear from them so soon and was quite shocked to say the least when Nancy called.

Ok, here is the run down on bloodwork:

Celiac-negative

TSH & T4-perfect

CBC w/diff-all within normal range



MRI-a bit questionable........there appears to be something that may be scar tissue near in or around Joseph's left frontal lobe. This is the same area where there was a good bit of irritable foci on his EEG. Now, this area could be simply underdeveloped due to his prematurity BUT he was just 4 weeks early since he and Jackie were born at 36 weeks and that is NOT all that early really; so I find it highly unlikely this is simply stunted maturity in this brain region. We will likely repeat the MRI in 6 months, Nancy (the RN) was not positive since she does not read the reports on a regular basis nor doees she fully understand the findings. She is going to have Dr. Patel (since Pappas is in Greece still) check the report and get back with me on the follow up plan.

Seizures-the prolonged EEG is on hold yet, we are going to up the Trileptal once again to 3ml twice a day and see what happens.



While this is not entirely what I was wanting to hear today, I can rejoice in the fact my son does not have leukemia, does not have hypothyroidism or hyperthyroidism, and does not have Celiac's. We will pray this area is not a big deal but I have to admit I am a bit frightened by the possibilities. Nancy said something about hypo (blahblah) myleogenous (somethingerother) frontal lobe in the left hemisphere. Not much information but it's something! LOL I will know more soon.


Now for the fun stuff! I am also soliciting funds for my team, Taylorville-Three-21, to participate in BUDDY WALK 2009. BW's take place all over the states by various Down syndrome foundations and organizations. Our BW for Indiana will take place in Indy, October 10, 2009 in Celebration Park. BW's are very important because they raise funds for research, support, and raise awareness about Down syndrome in our communities. This will be the first year we will be participating in the 2K walk and I am VERY excited. My two best friends, Carrie & Kelly will be walking with us and so will their daughters, Kristian, Mallory, and Delaney. I am so blessed to have such a supportive and loving extended family. They may not be my sisters by blood but God has blessed me with their love and tied our hearts together for the long haul. Thank you so much for helping us. You can find a link to my donation page in my side bar to the right of this post or you can simply copy & paste the link below and be taken to the page.

http://www.firstgiving.com/christietaylor

until next time,
"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has"~~Margaret Mead

Happy 4th of July. Thank you SOLDIERS!!!

The following section is a repeat post that I have tweaked a tad. It is about a soldier my family holds very near and dear to our hearts. Please read it and say a prayer, think good thoughts, and remember all the soldiers in wars past and those who will be going into combat. I am thankful for men and women like Bill Watson who willingly fight for my freedom. You do not have to agree with this war, or even the concept of war, to be able to lift them up in prayer, keep them in your thoughts, and show the gratitude they are all worthy of receiving.

Bill was one of Shawn's bosses before Bill went back to the old KTP plant, while they worked together they became very dear friends. Our families are similar; we both have a special needs child. Bill and April have two kids and their daughter has Autism. Of course, as you know, one of our twins has Down syndrome. Bill totally understood some of Shawn's challenges and vice versa and the two just hit it off. Last year they took a motorcycle trip to the Dragon in Tennessee. And when Bill returns home, safely, they will be going on another trip to the Black Hills (I think).

Bill's wife, April, worked her booty off and many people came to have one last revelry with Bill before he heads off for his tour and I am sure we will have one HUGE revelry when he safely returns!! I was honored to make his send-off cake. While we were there I was able to see and reminisce with some old friends from Chrysler too. It was good to see so many people who love Bill and April and their kids show up to send him off with fond memories of his last days at home before he leaves for a year or so.

I have been keeping up with April's posts on Facebook while she is counting down the days to see Bill before his deployment. As of today, just 5 days to go until she will see him before he and his troop leave for Afghanistan. I cannot imagine being in April's shoes. I have such respect for her and her family. Trevor is a teenager now and such a great kid, I am sure he will be a great source of help to his mom.

I can say this, I am so eternally grateful for the men and women like Bill; those who willingly choose to serve and protect no matter the cost. He is going away, sacrificing family time with his wife, son and daughter. Why? Because he is proud to be an American, because he is proud to protect you and me, because he is a man of exceptional selflessness.

You do not have to support this war but how can you not support and pray for a man or woman willing to sacrifice of themselves when they don't even know you? This is as thankless a job as it is a thankful one. A soldier's job is never done. I am not asking for debates here, this is not a political thing. I don't care if you support our government in this war, all I am asking is prayers for a man willing to risk it all for you.

I will be praying for Bill Watson and asking everyone I know to do the same. He is a good man, a husband, a father, a son, a brother, a cousin, and a friend to many. He deserves our prayers. He needs our prayers. I intend to pray daily for his safety, his troops safety, and his safe return. I intend to pray to see him walk up to my front door after he gets home and give me a big hug before he, April, Shawn and I go out to celebrate his homecoming and my 36th birthday. That is my prayer. I want the soldier I know to make it home safely to be with his family and friends. Nothing more and nothing less. Lord, God Almighty, hear my prayer. Amen.

God speed, Bill Watson.

We love you....

The whole birthday montage........

For your viewing pleasure......

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

FINISHED!!!!!

I am finished with my Associate's Degree in Business Management!!! I am officially, at the age of just 34 years, 10 months and 26 days (LOL) an educated woman! As I look back on my life, I am amazed I am still here and my brain works well enough to maintain a 3.87 GPA. I wish my mom were here to see this, I imagine she would be tickled pink to see her "Skinny Minnie" walk across the stage and receive her college diploma. Nearly 15 years ago, my mom went home to her Heavenly Father. I miss her dearly. We were robbed. Death came like a thief in the night and at 9:05 p.m. Monday, September 5, 1994 she passed away.

My kids don't know their Grandma Janet, my sister and brother barely remember her. I too had just a few years with her and most of my memories of her are of her being sick. But I can tell you this, she was loved by many people. My Aunt Susan loved "Chit" dearly. My Uncle Steve always tells me how much I remind him of mom and how she was a good woman and she would be proud of me. My dad loved her even though their love was doomed from the get-go.

Janet Lee Bitner was born December 30, 1956 to Ralph and Nancy Jean (McClain) Bitner. She would be my Grandma Nancy's fourth and last child. Grandma Nancy passed on due to an epileptic seizure when mom was just barely 3 years old and then my Grandma Ruth raised her. Grandma Ruth taught mom strength and dignity. Even when we had nothing, and I mean nothing. Mom could walk with her head held high. When her body was beaten by chemo and her head bald, she walked with pride. When we lived off of welfare and foodstamps, she made sure we had all we needed.

Mom was giving, if she had a penny and you needed two; she could stretch what she had to make sure you had what you needed. If there was little food in the house, she went without. She loved us kids with a fierceness, which is strange because she never wanted kids. She gave custody to my dad when they divorced but she was my BEST FRIEND. My soul mate. My kindred spirit. I spent my teen years living with her, Geneva and Bobby. She passed when I was 20.

Mom loved music but could NEVER remember who sang what song...Ask her who is that on the radio and she would say, "Bob Seger". It could have been Tracy Chapman and she would say Bob Seger. Mom was a great cook and I miss her chili con carne.

Mom was there when I married Jeremy, so at least she got to see me in a wedding dress. I regret I never had children while she was alive, she would have loved being a Grandma. I would have had a babysitter and probably would have had to fight to get my kids away from her. But, I know my angel baby is in Heaven with her and I guess that will have to do for now.

I can imagine mom with Jared, he is so smart. I imagine she would be tickled with all he knows and how he is such an old man in a little boys body. Joseph, my special needs child who can charm any woman he meets, would have her wrapped around his pinkie. And Jackson...well, he is what he is. All boy all the time, and mom would LOVE it. Mom would also be smitten with Joshua and Janae (who is named for mom and coincidentally looks an AWFUL lot like her). Mom would be very proud of Geneva for going back to school too.

My heart still aches and breaks a bit but not as often as it used too. Shawn's father is passed on as well and it is nice to have mate that understands what this loss is like. I think mom would love Shawn too (Lord knows my dad does)! There are days I want to hear her voice, to smell her hair, to hear her laugh. But I can't. I cannot recall those things any longer and it makes me a bit miffed. I should be able to recall these nuances but time is a tricker and things change. So maybe tonight, she will visit me in my dreams again. Maybe, tonight, she will visit my boys.

But then again, if not, just like Otis Redding sang
I've got dreams, dreams to remember.
I've got dreams, dreams to remember.



until the next time....love your momma, hug your hubby, mind your father, and always kiss your babies goodnight even if they are already asleep. Make sure those you love, know you love them.

One little fishy............

Swimming in the water!!!

Today, I took all five kids swimming at Carrie's house. We had a BLAST. Jackson LOVES the water but hates the floatie seat and Joseph LOVES the water in his floatie seat!! Joseph was bucking around and splashing, tossing balls (with his left hand only and that will make his therapist, Kim, very happy) and just having a grand ol' time. Jackson was ok in his floatie seat for a bit but then he had to be out in a swim ring with arm floaties like the big boys (of course).

We stayed for a couple hours and swam for the about and hour and half total. Fed the kids and then we headed back home. My munchkins passed out on the way home but are still sleeping an hour later. Ahhhhh, the days of summer swimming....wears a wee little one out!!

I think we will be taking a trip to the zoo rather soon. I just hate that it is sooooo very hot right now, but with both the big boys in school this fall it is kinda hard to go when school is in so we have little choice in the matter. Debating on whether or not to take the littlest ones. Well, that's all I got for today. Here are some pool pics. ENJOY!!

Boshidara......

I will warn you now, if you watch this video it will most likely leave you in tears. I could not watch it in its entirety. I stumbled upon it by chance, while visiting another blog.

If you do nothing else, please take time to pray for all the children left in orphanages to die alone and unloved. Boshidara has been suffering for 2 years. I cannot fathom not loving her and caring for her simply because she is disabled. God bless you sweet child, may you find peace in the arms of Jesus.

Reflections

Nearly two years have passed since the twins were born. Where has the time gone? My babies who were a month early are now toddlers busy within the world around them. Nothing seems to stop either child from accomplishing what their little minds conjure up.

Jared is gearing up for 1st grade and Joshua will be in Kindergarten this fall. I believe we will put the twins in preschool one day a week and Janae might get to go too but she will go three days a week. Shawn is back to work and I am nearing the end of my schooling (for now). Geneva will also be re-enrolling at Ivy Tech this fall.

Three years ago, I would have never believed my life would be like it is today. Three years ago today, June 20, I closed on my house and was reading myself to move in next month. Three years ago, I was divorced. Three years ago, I was planning on raising my son on my own. Three years ago, I was still employed at Chrysler working as much as I wanted and earning great money. Three years ago, Jared and I walked the acre that is my back yard hand in hand and admired what was 'ours'. Three years ago, I was concerned with me, work, and Jared and nothing more.

Today, my days are filled with concern for my family, my kids, my sister, her kids, my husband, my school, and how to find more hours in the day. My days revolve around physical therapy, doctors visits (for me, Shawn, and all the kids), cooking meals, cleaning house, doing laundry (which is NEVER, EVER done) and trips to the grocery. I can look back now and see how really bland and boring my life was. My days are hectic that is true but even on the days when it seems all I do is holler at someone, I am grateful for all I have been blessed with.

Jared is so very smart and sweet (I just wish he was sweet all the time) but he is getting bigger by the day and before I know it he will be a teenager. Joseph and Jackson are truly amazing. The blessing of watching one twin develop typically and then watching the other twin develop on his own time frame is truly a gift. It is such an eye opener to witness all the little things you take for granted that your children will accomplish and being a stay at home mom this time around has really shown me all I missed when Jared was this age.

I cannot look back with regret; I did what I had to in order to provide for my family at the time. Matter of fact, back then I refused to quit my job and stay home to raise Jared much to the chagrin of his father. In hindsight, I see now I made the correct decision in staying with Chrysler then. If I had not stayed on at Chrysler then, I would have NOTHING that I have now. Chrysler helped me to buy my house, my home. The home that now protects 8 people. What a blessing. So all the working mothers out there doing what you must, don't ever second guess yourself. In time you will see, you are doing the right thing and your family will benefit from it.

Blessed be the number 3.

So we all know the number three is linked to the Bible. We have the Holy Trinity, God the Father, the Son and the Holy Spirit. Jesus was resurrected on the 3rd day. Moses asked God 3 questions. Earth was formed on the 3rd day. The number 3 is mentioned over 500 times in the Bible. We (Christians) have 3 lives: Birth, Life, and Death (where we receive our everlasting life with God). The rooster crowed on the 3rd time Peter denied he knew Jesus. The list goes on and on.

So, what is the connection here? The 3 copies of the 21st chromosome of course! ;o)

Trisomy 21 is a blessing. Trisomy 21 has been a blessing to my family from the very beginning. I can honestly say I have never cried a tear over Joseph's Trisomy 21 diagnosis. Have I cried? Sure, I have but not because of Trisomy 21. I have cried over the prospect of Alzheimer's when he gets older, I have cried over his epilepsy diagnosis. I have allowed pity to overwhelm me when back in March I witnessed 20 month old typical twins playing together and knowing my boys were not doing that and wondered when they would. And like usual, I came to my senses and realized I was feeling pity for myself not my boys and decided that was not something I wanted to woller in.

My message for the world is simple. Trisomy 21 is not the end of the world; Trisomy 21 is the beginning of a world you never knew before.

Joseph poses his own uniqueness in this world. He loves his therapists. He gives sweet, wet, opened mouth kisses. He laughs with sweet abandon. He is learning as he grows. He does this great "Wonder Twin Powers" activate thingie with is twin Jackson where they reach out their forefingers to one another until they touch and it makes my heart melt. He feeds himself with a fork and he is getting much better about not throwing his plate on the floor. He uses about 20-25 words with intent. He can even say Sarah (and that is the name of his speech therapist).

Now, I won't try persuade you with all rose colored examples. Is life tough? Sure is, sometimes. But that is not because I have a special needs child. It is tough sometimes because life is unsure, unfair and unpredictable. My first born son, Jared, has severe allergies, strabismus (which was corrected with surgery and then went awry again) and is very intelligent and extremely STUBBORN. Joseph is my mellow fellow, my carefree baby, but he has needed tubes in his ears and when he had his tonsils and adenoids out we wound up in the hospital for severe dehydration. During that time, my spirit was broken. My baby was sick and I could do nothing to make him better, in time it passed and I am stronger for having been there with him. Jackson is my WILD CHILD. He is stubbornly independent but also the best little helper ever. He is the one I never worried too much about.......UNTIL he escaped was found two houses away from ours just toddling down the country road that we live on. He SCARED the living day lights out of me and his dad. But, with everything in my heart and soul, I can without a doubt say life with Down syndrome is no tougher for me than raising my typical child.

I never knew the joy I was missing and Joseph has showed me so much. I have learned to slow down because of him. I have learned to focus because of him. I have learned to wait patiently (still learning that one!) because of him. God has shown me so much through Joseph, and I imagine these lessons are the same ones HE has been trying to show me for years but, shamefully, I admit it took Joseph to open my eyes. I missed out on a lot of Jared's early years and cannot get them back now but I am grateful Jared was my first born, Joseph my second and Jackson my final baby. What a motley crew they are and I love them for it.

This picture is an oldie but a goodie......taken in January of 2008

The price of perfection.

I was shocked to read of a family who is suing their doctor because of a missed prenatal diagnosis of Down syndrome. I am both angered and disgusted and ashamed of people like them.

The price of perfection (thank you Heidi for that quote). What price were they willing to pay? Abortion and had they known, they would have terminated. The price is a life. They admit this today, not only do they admit their utter disappointment but they are wanting restitution for a life changed. How utterly disgusting. My heart breaks for their 2 year old little girl. CPS should take her and give her to a loving home, namely mine.

The price for perfection, statistics that shock me are nearly unbelievable. There are NO guarantees in life. No guarantee the "perfect" child born will be "perfect" their entire life. NO guarantees that child will develop "normally". No guarantee your child will look like all the other kids, talk like all the other kids, grow like all the other kids, be skinny like the cool kids, be smart like the honor roll students, be athletic, be heterosexual, be only male or female, be born with full vision, hearing, and the like. If you are not willing to accept what you get when you roll the proverbial genetic dice; keep your legs shut.

This is not about religion (but I do believe abortion is an abomination). It is about life and what you do with it when life comes to you. My heart always aches a bit when I think about the 90% of babies with Down syndrome that are not born just because the woman carrying them found out while she was pregnant and then terminated. I did not have a prenatal diagnosis because I declined all testing; the testing would have made no difference to me and Shawn.

Our babies were coming. Two boys, two first born sons for my husband. New life. A new beginning, a fresh start, a challenge but then again all children are. Joseph has Down syndrome and I knew it the moment I laid eyes on him. I knew his secret, his blessing, his gift.

My heart breaks for all those babies who are gone and the would be parents that don't know the blessing, who refuse to accept the blessing, who never see that gift, who never revel in the secret and then SHOUT it to the world.

My poor husband........

Yesterday, we had plans to spend the day with my dad at the Young family reunion and later head to my best friends house for double birthday/pool party. Well, we were getting ready to leave and Shawn leaned in the garage entry door to the house to get Joseph; well, from here it gets kind of ugly. Suffice it to say, he and Joseph both went down. Shawn missed a step and rolled his ankle. He saved Joseph from any harm but his own ankle was not so lucky.

He was able to get up a few minutes later and then came in and iced it for about 10 minutes. Now, I TRIED to get him to go to the walk-in clinic to have it X-rayed to make sure it was not broke but he would not, WOULD NOT, go. So he sucked it up and hobbled around for the rest of the afternoon. Speaking of hobbled, remember the movie Misery? When Kathy Bates hobbles James Cahn and his ankles are all swollen, bruised, ugly and flat out gnarly? Well, that is what Shawn's left ankle looks like. Thank God it was not his right because it would have snapped the bone; the right ankle was reconstructed in 2003.

Saturday night about 9:30 we make to the ER. We made it home at 1:45 this morning and were in bed by 2:00 a.m. Tiresome for sure but we did have a good time while we were there. The waiting room was full and everyone was friendly and I was pretty much punchdrunk since I was so tired and cracking up most the night.

Today we are tired........zzzzzzzzzzzzzzzzzzzzzzzzz

Busy, busy, busy

So I am nearing my final day in my course work and will graduate with my Associates in Business Management from IWU with a 3.87 GPA. Yes, I am bragging! LOL I am very proud of myself. This course is kind of heavy with group work but that is ok. Aug 8, 2009 at 10:00 a.m. I will attend my graduation ceremony and then I am taking some time off before hitting the books again for my Bachelor's in Marketing.

Now, I know, you are all thinking.......don't do it. Don't take time off or you won't start back. Never fear, I will start back......we cannot afford to pay on my student loans!!! LOL

Jared is spending more time with his dad this summer break. I reckon this is good. I am just glad Tom is calling and asking for him. Jared is ready to head to the library and get some books, so maybe Sunday afternoon we can do that.

Jackson is amazing, he was helping me push my cart through Wal*Mart yesterday. I am just stunned at how UNLIKE both of his brothers he truly is. Jackson is very headstrong and so much more mature for his age. Jared was similar but Jackie has him beat. He's vocabulary has just exploded AND he is now answering questions properly when asked.

Joseph is my charmer; he captures the hearts of nearly every woman he comes across. He had all the gals at the pediatricians office swooning over him again today. I was able to thank Dr. Eric O'Bannion for ordering the EEG so quickly for Joseph. He is a wonderful doctor and gave me hug when I thanked him. Joseph has thrush and so long as we can get rid of it, there should be no worries. However, if it returns or we cannot get rid of it, it could point to leukemia. Either way, Joseph is due for his routine leukemia blood workup and check. This will be done either June 18 when we see Dr. Pappas (if he orders any blood work, Dr. Escobar is going to order all of Joseph's routine screens to be done at the same time) and if not at that time he will have all his routine blood work and screens done in July at our 2 year well baby check.

I am fearful of leukemia. Who wouldn't be? But I do not have that gut feeling like with everything else I was keenly aware of with Joseph. Just keep him in prayer and we will leave it up to God.

Until next time, I leave you with love and hugs.....

We officially have two toddling toddlers in our house!!

Just a quickie here........Joseph took his first fully unassisted steps today!!

Make an on-line slideshow at www.OneTrueMedia.com

Prayers for a soldier

Yesterday, Shawn and I spent 10 hours out of our house with no kids! That was certainly different. We went to lunch at Hacienda for some rockin' chips and salsa and then chowed down on some truly unauthentic Mexican food...........YUM!! From there we headed over to a going away party for a very close friend. Bill Watson is his name and he is leaving for Afghanistan near the end of July or first of August for a year long (maybe a tad longer) tour.

Bill was one of Shawn's bosses, while they worked together they became very dear friends. Our families are similar; we both have a special needs child. Bill and April have two kids and their daughter has Autism. Of course, as you know, one of our twins has Down syndrome. Bill totally understood some of Shawn's challenges and vice versa and the two just hit it off. Last year they took a motorcycle trip to the Dragon in Tennessee. And when Bill returns home, safely, they will be going on another trip to the Black Hills (I think).

April worked her booty off and many people came to have one last revelry with Bill before he heads off for his tour and I am sure we will have one HUGE revelry when he safely returns!! I was honored to make his send-off cake. While we were there I was able to see and reminisce with some old friends from Chrysler too. Double "D" showed up with his buddies, stepdaughter, and gorgeous little boy. Then later in the evening Carlson came with his wife. It was great to see those guys again. April and I sat and chatted, once she was finally able to sit down (which was not until 10 or so in the evening).

Some of the kids there were swimming, some were in the hot tub, some just ran around the yard having a grand time. It was good to see so many people who love Bill and April and their kids show up to send him off with fond memories of his last days at home before he leaves for a year or so.

I cannot imagine being in April's shoes. I have such respect for her and her family. Trevor is a teenager now and such a great kid, I am sure he will be a great source of help to his mom. I can say this, I am so eternally grateful for the men and women like Bill; those who willingly choose to serve and protect no matter the cost. He is going away, sacrificing family time with his wife, son and daughter. Why? Because he is proud to be an American, because he is proud to protect you and me, because he is a man of exceptional selflessness.

You do not have to support this war but how can you not support and pray for a man or woman willing to sacrifice of themselves when they don't even know you? This is as thankless a job as it is a thankful one. A soldier's job is never done. I am not asking for debates here, this is not a political thing. I don't care if you support our government in this war, all I am asking is prayers for a man willing to risk it all for you.

I will be praying for Bill Watson and asking everyone I know to do the same. He is a good man, a husband, a father, a son, a brother, a cousin, and a friend to many. He deserves our prayers. This pic is Bill in the mountains on the trip to the Dragon with Shawn.

This pic is Bill and Trevor on the April 2008 "Ride for the Troops".
God speed, Bill Watson.

We love you....

Epilepsy

A little over a month ago (April 29 to be exact) I called the doctor's office to voice my concerns about some peculiar behavior Joseph had been exhibiting for about a month. After speaking with Nurse Cynthia, and every time I say that it reminds me of The Rugrats and the bratty little girl's doll Cynthia the doll that looks like Barbie with a really, really bad hangover, I persuaded her to contact one of the NP's in the office. Martha suggested we contact Dr. Escobar our developmental specialist in Indy.

I called Dr. Escobar's office and they wanted and EEG done but I did not want to go to Indy for it. Soooo, I had to call our pediatricain's office back ask them to schedule it. At nearly 4:oo in the afternoon, I called Dr. Jones' office and asked for the EEG. At 6:30 that evening, I got the call our EEG would be April 30 at 10:45 in the morning.

The EEG was performed and it was during the testing I realized I was right. Did I want to be? Absolutely not; this was the ONE time in my life I WANTED to be wrong. I wanted so desperately to be wrong. Now, flashforward one more day to 5:20 in the evening. I was gone taking Jared to this Mamaw Federspill's house and had stopped off at Rural King to exchange some bibs Grandma Taylor bought for Joseph. Shawn got the call, Dr. O'Bannion (who is filling in for Dr. Jones since his kidney transplant) said our EEG did show some abnormalities and he "highly recommended" we see a pediatric neurologists and would set up the appointment. One more thing, he said, "Be sure to tell Christie she did a fantastic job catching this when she did."

Comforting? No. Reassuring? No. Reality? Absolutely.

Well, I got this news too late to call Dr. Escobar's office on Friday so I had to wait til Monday to make the appointment. I called first thing Monday morning and we were to be in Indy on May 5 at 4:45 p.m. The office was sliding us in to get the EEG read ASAP. The appointment went great, Dr. Escobar is such a genuine man. He told me, "This is not bad, this is not bad. But...Joseph needs to be on medication. He needed to be on medication yesterday. If you don't mind, I will call Dr. Pappas and get him on medicine right away."

I agreed, I would wait. He left the room and I looked down at my little guy and my heart broke a little more. I was having my own little "oh, poor me" party. Blech! We got our script and left to come home. I called my hubby and apologized. I called my dad and cried. I called my sister and bawled. I called my best friend and tried to hold it together.

The next day we started the meds and for the first couple, three weeks they kicked his butt! He would just konk out and would get very grouchy. Thankfully, my fears of "losing him" in the medication (Trileptal) never came true. His personality still shines but he does konk out early into the afternoon and sleeps for a LONG time.

I have not noticed any of the old peculiarities and I believe the meds are working. This in and of itself is amazing. Many times, medicating a child for seizure activity is trial and error finding the right med and dosage. We hit the nail on the head the first strike.

He is plugging right along, still making developmental strides. And now, epilepsy, is not so scary. I don't like it, and I don't have too. Epilepsy took my maternal grandmother when she seized and then passed away at the age of just 27 years. Epilepsy does mean a greater chance of Alzheimer's for my son and that freaks me out, but for today I shall watch my kids with wide wonder and not think about what might be.

OMG!!! He did it!!

Joseph did it!! Well, actually, he did LOTS today. For starters he took three steps, unassisted, from the couch to me. He stood up in the middle of the room unassisted today and did this many times throughout the day. He bonked his noggie today while rising to the standing position under the dining room table......and he giggled when he did it! He also stood to rise from a squatted position and toddled three or four steps over to me.

He ate three fish sticks all by himself and even dipped them in ketchup on his own, off of his plate, AND did not throw his plate on the floor. Then he ate velveeta shells and cheese and would ask for "muh bite-bite" and say "yes" when I would ask, "More"?

Now, I realize this is not a big deal to many parents out there.......but lemme tell ya, when your child who is delayed does even something so minute as asking for more when eating and NOT tossing his plate on the floor. This is BIG business!! LOL Oh, ya, he also did not throw his sippy on the floor tonight.

Yes, my middle child, my smallest boy is plugging right along. And I am sure his brothers and cousins have a lot to do with his progress. If only they all knew how great they are for him. Someday they will know, but for now, I am just happy they are here and loving him, playing with him and encouraging him.

It is funny, my nephew, Joshua, will encourage Jackson to say new words. And Jackie is more than happy to oblige. Funny thing? Joshua, the child who attends speech therapy weekly, is so in love with my boys that he encourages them to speak. Unbeknownst to him, even in his difficulties with announciation, he is making my boys stronger in their verbal abilities. What a blessing he is to them.

Janae, my niece, spent the day outside with Jackson today and they had a blast. Nae-Nae would push him around the yard in the Cozy Coupe and they would "yammer" back and forth at one another. Then it was time to just push empty "vehicles" around the yard. Nae-Nae took the empty coupe and Jackie was pushing an old army type dune buggy that used to be my ex-stepsons. They did this for nearly an hour and a half today, just rambling about the back acre having a ball together.

Today was a good day...
Good night all.