The Truth about Down's Syndrome

Due to recent circumstances and a certain politician, I have done a little bit of extra research on the history of Down's Syndrome. I also have looked a tad bit into some of the claims (although I already knew them to be false) that this "man" has been spouting about the so-called related incidences of DS, Autism, and petroleum pollution. I thought it important to set the record straight in some small way without drawing any further attention to the person who started this storm of poop. (Not at all what I want to call it, but I AM trying to be nice here after all).
Down's Syndrome is caused by a replication of the 21st chromosome during cell meiosis. There is no solid medical evidence of what causes this in most cases. It's just something that happens. Incidence of this is estimated today as approximately 1 in every 733 live births. These numbers increase along with increased maternal age.
There are a wide range of possible physical similarities among people with DS. However, each child is different and not all of them share every characteristic.
Kids who are born with DS also face the possibility of several other health problems, which include congenital heart defects, respiratory and digestive issues, and increased instances of leukemia. Again, this is not to say that every child with Down's Syndrome has any or all of these additional issues.
Mental capacity is also dependant on the child itself. Despite misconceptions, not all, or in my experience, not even the majority, of our kids could be considered unintelligent, or as having limited or diminished mental capacities. Our kids do not remain children forever, nor do they remain children mentally for ever. They grow up. They get jobs. Some go to college, get married, have children. They are productive citizens and their only limitations are those that we, as a society, place on them.
There is absolutely NO evidence that every child with DS has autism. Do some? Yes. But that number is few.
The person whose name shall not be mentioned here has stated that Down's Syndrome is caused by a build up of toxins put into our environment by big bad petroleum companies. We, as parents, already knew this to be blatantly false. But I thought it had to be pointed out (with evidence, of course) that DS existed long before there were many uses for petroleum at all.
In 1866, John Langdon Down, who was the superintendent of an asylum for disabled children in England, published a paper on a set of children who shared similar characteristics. This is not to say that kids with DS did not exist before that time (obviously they did!). Simply that he was the first to recognise and put a name to the condition that they had.
The first actual gasoline automobile wasn't even invented until 1885, which was almost 20 years later. Even then, the gas powered car wasn't something that every household had until the 1950's and 60's. In 1930, there was approximately 1 car to every 4 households.
I think this pretty much disproves any theory that petroleum products caused our children to have DS. As I said, DS was around long before there were large petroleum companies to cause wide spread pollution. Is pollution a bad thing? Yes. Does it cause other health issues? Yes. But definitely not this particular one.
I hope sincerely that this man goes down. I know that as angry as I am, I will still pray for him tonight and will hope with all of my heart that he takes the time to be educated. He probably won't, but a mama can still hope...........

And Now For a Musical Interlude.....

I never felt this song was about being in love. I always, always thought about my kids when I heard it......and I still wonder what I ever have done in my life to deserve to be so immensely blessed. :)

The Pursuit of Perfection

Dearest Bug,

 Pretty much my entire life I have struggled with my own self image. If I'm honest with myself (and you!) here, I have to say that it's an issue that I still battle at times, even now. I look in the mirror and see every little imperfection, every blemish, every ounce of cellulite, instead of seeing the good things about myself. I try to convince myself most days that how I look on the outside doesn't really matter anyway. It's what is inside that counts most. And even I have to admit, most of the time I am pretty darn proud of what's on the inside.

But ours is a culture that typically values what is visible to the naked eye more than what we have to dig deeper to find. Society looks for beauty, thinness, and dare I say it? Perfection. 

This leads me to a big question. If, as the Bible says, we are all made in God's image, then aren't we, even with all of our "flaws" as humans as close to perfection as we can possibly get? 

The hardest thing for me to wrap my head around when I found out that you had Down's Syndrome was the misconception that you would be less than perfect. I guess all of my years on this Earth had reinforced that anything less than what I had envisioned as "normal" wouldn't be acceptable. Not that I didn't love you, even amidst all of my sadness and fear. But I also mourned deeply for that idea of the "perfect" baby I thought that I was losing.

How amazing to find that I didn't lose that baby at all.

 You. are. pure. perfection.

Every single thing about you is exactly as it should be. Exactly how you were created to be by the greatest mastermind ever, our awesome God. 

He put together the pieces of you. He gave you your big blue eyes, your soft pink skin, your amazing smile, your crooked pinkies, and your tiny feet, made just perfect for sandals. He gave you your awesome personality, full of pride, joy, love, and strength with a liberal dose of pure sunshine thrown in for good measure. He took all of the best parts of Daddy, me, your great-great grannies and tons of other ancestors and knit you together into one absolutely bright and beautiful package. He even created your (formerly) tiny broken heart. And as hard as it was for me to understand the reasoning, He KNEW that you would be tough enough to withstand whatever you had to go through for that heart to be whole again and that you had the determination to come out of it all stronger than ever.

It will never matter to us whether you are long and lean, or short and stubby, or somewhere in between. It won't matter whether your hair is straight as a board or curly. It won't matter whether you hit every developmental milestone exactly when you are supposed to or if you lag behind. It doesn't make a bit of difference if you learn fast or slow. Regardless of what the future holds, you are you. Beautiful. Perfect. Loved beyond measure.

We may never be the world's idea of perfect on the outside, but I gotta say that we're pretty darn close to it on the inside.

So I say, let's go ahead and ditch this endless pursuit of this elusive thing we call perfection. We have skipped right past it into the best part of all. Happiness. :)

All of my love,

Mama

Cuteness Overload.....

So I don't have a whole bunch to say today.....but I had to share some pics. I'm pretty darn sure that I just overdosed on my daughter's adorableness! :)

And as if this little snapshot of cuteness wasn't enough, I figured out that her hair is finally long enough to put into pig tails! OH MY GOSH! 

*Warning: The following pictures could quite possibly put the viewer into a cuteness coma. Take proper precautions to ensure your safety.*

She also finally got that big toe in her mouth after weeks of trying...I guess her legs finally caught up to her willpower....

And the grand finale of adorable......

 

Have a great weekend!!!! :)

The Ones Who Have Come Before......

Dearest Liddy,

As I look back on the beginnings of my pregnancy with you, I can still remember very clearly how very much I wanted to name you after one of the most important women who has ever touched my life, my Nana. I sincerely felt that had she been here on Earth, you would never have existed. I can see her so clearly, giving God what for, telling him that her granddaughter needed another baby, a baby girl, despite what ever medical conditions those doctors said I had. After all, who better to give a miracle than the Man upstairs Himself? Knowing my Nana, that's probably exactly what she told Him too! :)

I could also hear her voice, as plain as if she was sitting beside me, telling me that I had better not even dare to "name that baby Cecile." So in order to keep with my desire to name you after her, I had to use her middle name, Ann. 

Well, I didn't really want to name you Ann. Don't get me wrong. Ann is a very nice name, but somehow it just didn't fit. So after much thought, my mind settled on the second most amazing woman I ever knew, my Granny Cole. Lydia Anne. Yes, that just seemed right.

Keep in mind that all of this consideration came while you were barely more than a tiny bean growing inside me. Long before we knew for sure that you were a girl, long before we knew you would be born with a heart defect, long before we had ever heard the words Down's Syndrome, long before we ever knew YOU.

Looking back now, I can see that it HAD to be divine providence. 

How fitting that I would name a little girl who would need such strength after two of the strongest women I know. How fitting that you would cause me to pray harder than I have ever prayed, while named after two amazing ladies who were both the biggest believers in the power of prayer. How right that you would be a tiny package full of spunk, laughter, orneriness and sheer determination, just as these two ladies always were. How amazing is it that by having you, I became more like the two women I always wanted to grow up to be than I ever was before?

Most amazing of all to me is how much like them you are already. 

You have Nana's huge smile....

as well as her laughter and her sheer joy in living. You ooze love out of every pore of your body, just as she did. (There was absolutely NOTHING in this world like a Nana hug when the world was falling apart around you.) You even cover your mouth when you are really tickled, just like she did.

Granny Cole was just spunky. A lot like you. I can remember how much she traveled, even when she was old (which she was as far back as I remember!) and her many stories about all of her boyfriends. I feel comfort knowing that she thumbed her nose at convention and at how the world expected her to act.  I'm pretty darn sure that when you are older, you are going to do the same.

That's Granny Cole in the background...and Caleb is the baby.

She was full of faith. Full of fire. Stronger than steel, yet still the softest teddy bear underneath. And I have to say, that's you to a T. 

 

I love the little characteristics of them that I see in you. I obviously couldn't have chosen a more fitting name. Knowing now what I was clueless about then, I'm positive that you were aptly named for the struggles you have faced already and those that are still to come. 

I wish that you had gotten the chance to know them. But I'm pretty certain that they know you regardless. :)

Love you so much, baby girl.

XOXOXO,

Mommy

Musings.....

Dearest Liddy,

I want this world to be a beautiful place for you to grow up in. I want so much for you to never experience the ignorance and prejudice that surround us all. I wish with all of my heart that you would never have your feelings hurt by someone who called you a nasty name, or made fun of you because of something that you can't control. I would love to wave a magic wand and see all the people in this big old world live in peace and harmony. No cruelty. No abuse. No neglect. Just love. Call me a dreamer.....

Unfortunately, humans are, well, human. And the reality is that true ignorance will never be changed. That doesn't mean that we should all stop trying. But it seems as if for every one mind and heart that is changed, 10 more pop up. It's impossible to change someone who sees nothing wrong within themselves. And all of the words in the world don't make one bit of difference.....

I have my beliefs. I believe that you are an amazing gift, one that makes us the lucky ones, the blessed ones. I believe that you will take on this world head on, and probably with that huge smile on your face. I believe that you have more strength in your tiny body than anyone (even me!) gives you credit for. I believe that you will meet any hatred you encounter with sheer, unadulterated love. I believe that, yes, sometime in your life you will be made fun of, but I also believe that you will be tough enough and smart enough to see it for what it is. The misguided beliefs of someone who doesn't matter. The ones that truly matter will love you for you and will support you, no matter what. 

 Do I want to change the world for you? Without a doubt. But there are definite limits to what my beliefs are able to do. 

 

I promise that I will keep trying. And even though I may never change the world, I will continue hoping, praying and waiting.......

Waiting on the world to change.

Instead of trying to change the minds of all the ignorant in this world, I will simply teach you that you are special, unique, amazing, and beautiful. Their words can't hurt if you don't allow them to. You, my sweet angel, are not less because of Down's Syndrome. You are more. And any one who can't see that isn't worth your tears, your worries, your time. 

I love you, baby girl. 

XOXOXO,

Mommy

The End of Innocence

My heart is heavy.

This week has been a true eye opener for me. And once again, I find it impossible to stay quiet.

I'm not jumping on my soapbox for my daughter, although she is the reason that I have paid attention to the images that are now forever seared into my mind. The cruelty, injustice and heart wrenching photos I have viewed this week would have horrified me, whether Lydia existed or not. But I also believe that had I not been given the gift of my daughter, I would have turned away, like so many others in this world do. I wouldn't be here, opening my mouth, and crying out for someone to please listen.

When did we become a world, a society, who can allow innocent children to be thrown away without a single thought? How can we stand by and let an entire population of beautiful people be snuffed out of existence because they don't fit our "ideal"? How can we turn our backs on a starving little girl whose only crime is that she was born with an extra chromosome?

This is the reality.

Our government, along with many other governments around the world, are pushing for Assad to leave Syria because of the murder of innocents who happen to be in the wrong place at the wrong time. We send our troops to aid the suppressed. We make an enemy out of anyone who we feel is mistreating their people and abusing their authority. Yet, not one government worldwide stands up against what is essentially the genocide of children with special needs.

Denmark has announced that their country will be Down's Syndrome free by the year 2030.

The abortion rates for babies diagnosed prenatally with Down's Syndrome, already estimated at between 90 and 95%, is climbing ever higher almost daily.

Children in Central and Eastern Europe, Russia, and Asia who are born with handicaps are often killed. Or worse (as horrifying as it is to say that anything is worse than death), left in an orphanage with no one to care for them, no one to love them. Starved, beaten, sexually abused.

How can I stand by and NOT speak for these innocents? How can you?

How can we let THIS happen.....

This is Liliana. She is 11 years old. The proof of the neglect she has experienced during her life is right here in front of you. This precious girl only weighs 10 lbs. AT 11 YEARS OLD. Her new family is trying to bring her home. I'm praying with all of my heart that it's not too late. 

Please. I beg you. Stand up. Do something, even if all you are able to do is pray.

This world would be missing out on something truly beautiful if all of us were the same. If all of us were society's idea of perfect. 

I know my life wouldn't be the same without this little face....

I do this so.. this world will know...that it will not change me.

How Lucky I Am....

Almost three years ago, I met the most amazing man.

And I, the one who always swore to never get remarried, fell head over heels in love. 

Not even a year later, I stood barefoot in the soft white Gulf coast sand and said "I do."

Our separate families of two became a single family of four.....

There have been many adjustments to be made and we have had more than our share of hard times.

But there has been a whole lot of laughter and fun too!

This fantastic man is my very best friend.

I knew that he was an amazing father. I know he was nervous about having a little girl. He had the same fears and concerns about what sort of life Lydia would have that I did. Yet was able to remain my rock. From the moment he first laid eyes on her, his heart has been hers.

I don't know how I made it 31 years without him. 

He has filled my life with laughter.

He has given me the most beautiful daughter.

Our family of four is now happily a family of five.

And we couldn't be any more blissfully happy.

Happy anniversary, John. I love you more than mere words could capture. I am so proud to be your wife, your partner in this crazy thing we call our life. 

 How lucky I am to have found you!

XOXOXO, 

Heidi

Birthdays.

Happy 16th birthday, Amanda!

At 1:37 a.m. 16 years ago, I looked at your precious baby face for the first time. 

I was changed forever.

I can still remember the feel of you in my arms, the smell of your sweet baby head, and the way that you looked at me with your big brown eyes, like you were memorizing my face the same way I was memorizing yours. 

3 days in the hospital, with you every single second, as if that would make up for all the future days that I wouldn't be. Those precious moments with you have given me the strength to keep going and have given me something to hold on to for these long years...now passing so fast.

It's hard to wrap my head around the fact that you are almost grown up...

This morning was the first in 16 years that I didn't wake up at the exact minute that you entered this world.  But you were my first thought when I opened my eyes. 

I hope that you have an amazing birthday. I wish I was there! Know that my thoughts are with you this day, and all days.......

Bombarding the Gates of Heaven

Friends,

In a little less than 9 hours, beautiful Grace's mommy and daddy will hand a surgeon their baby. They will endure what is, undoubtedly, the longest and toughest day of their lives. 

That surgeon holds Grace's life in his hands. 

As a mama who has so recently been down this particular road, I know that the coming days and weeks will be filled with fear, helplessness, and pain. But I also know that it will bring its share of joy amidst the sadness.

How I wish that no one had to face this. How my heart hurts for all of them.

Jenni and Darren, you are in my prayers tonight and will continue to be tomorrow, as well as the coming weeks of recovery. I just know that God already has baby Grace in the palm of His hand.

"Broken hearts become brand new...That's what faith can do."

Please join me in prayers for this tiny angel. And her mommy and daddy too.

May they all have the strength, the faith, and the peace necessary to come out stronger than ever on the other side.

The Things I Have Learned From My Kids

Dearest Bug,

I have been blessed to give birth three times now. I brought into the world three unique individuals, each with their own gifts, talents and personalities. Each of you has features the same, but you all look different. And every one of you has taught me something different.....

The baby I named Angelica Renee, meaning "Of the angels." My first born. My first taste of what it means to have my heart separated from my body. For many years, the source of both my greatest joy  and also my greatest pain.

Being a pregnant teenager was hard. But I watched in overwhelmed awe as God used her as an instrument for His glory. I heard the voice of God so clearly for the first time in my life, and I, who never obeyed any one willingly, fell to my knees and surrendered the thing that meant the most to me...my daughter. She taught me to have convictions. She taught me that sometimes it isn't easy to do the right thing. She taught me that pain refines you, makes you stronger and wiser. She taught me that I have demons that plague me too, but she was also the reason I continued to fight them. She taught me that patience is a virtue (one that I don't always possess). From her pictures, I grew to know that she was GORGEOUS, funny, smart, talented, and she has an absolutely heart-stopping beautiful smile.

I know that ,so far, out of all of my kids, she is the one who acts and looks the most like me. Nature vs. nurture, my rear. ;) And throughout her life, while I have watched from afar, she has taught me the beauty of loving someone enough to let them go...knowing without a doubt they will be returned to you. I have so many hopes and dreams for this girl. She was named Angel for a reason, even if neither of us know what that reason is just yet.

Caleb. My second child. Named from the Bible, a name meaning "faith, devotion, whole hearted." A big name to live up to, but most of the time he does! Born three short years after Angelica, but after what seems sometimes a lifetime of walking through darkness. He, quite literally, saved me from myself just by existing. My first real taste of being a mommy, instead of just a mother. Scraped knees, dirty face, big blue eyes, and an infectious giggle. He is  nearly a genius in math, can play three instruments, and is darn near 5 inches taller than me at 13! We have learned together what we each need to get along. He has taught me more about little boys (and big boys too!) than I could have ever hoped to know. We have sat countless times in the emergency room for fevers and illnesses, and a couple times for injuries which always seem to happen in the most ridiculous way possible. He taught me that babies sometimes go to sleep when the sweeper is running. He taught me the magic of mommy kisses to make everything better.

He has broken my mommy heart. He has proven that he has a beautiful soul. He has taught me what it REALLY means to be a mom. And now he's teaching me the hardest lesson I have ever learned so far....how to let go. How to trust in the work that I have done to this point and allow him a little room to try his newly unfurled wings. Not easy, by any means. But definitely what I have been planning for all of his life. I know he's doing to do just fine out in the big old world (even if I still will always worry!). He has hopes and dreams for himself. And I couldn't be any prouder of him!

Just when I truly began to believe that Caleb would be the only child I ever raised, that no hope existed that I could ever have another baby, along came you. A miracle from the start. Lydia Anne, named for two of your great-great grandmas, a name meaning, "Of the noble sort" and "grace". Oh. I couldn't have named you any better for the trials you will face in your life, even though I never had a clue when that name was decided on...long before we knew whether you were a girl or a boy, long before we knew about your heart defect, and long before we had ever heard the words "Down's Syndrome". 

You have taught me true grace under fire. You have led me to appreciate the little things in life and to celebrate the tiniest accomplishments. You have made me grateful for each day. You have shown me that the hardest heart crumbles to dust with the flash of your smile.

You have taught me to laugh. To cry. To pray. To trust in God. To love with everything in me. 

You taught me that nothing is a given. But most of all you have given me the chance to be truly thankful for what I have been given.

Three beautiful, unique, immensely special children. 

Blessed? Yep. That's me!

I am so thankful for each and every one of you. You have all brought something irreplaceable to my life and I would not be the same without the existence of each of you. I would not be me without you. 

XOXOXO,

Mommy