...And in the air, the fireflies, our only light in paradise. We'll show the world that they were wrong, and teach them all to sing along; singing Amen I, I'm alive. Amen I, I'm alive...

- Nickelback, If Everyone Cared

For All The Right Reasons Album

And I'm singing Aaa-ayyy-men, I'm alive!

William Leonidas November 12th, 2009
My only regret is that I cried so many tears while I waited for you.

"...I'll try ~ but it's so hard to believe. I'll try ~ but I can't see what you see. I'll try and try to understand the distance between the love I feel ~ the thing I fear ~ and every single dream. I can finally see it. Now I have to believe all those precious stories. All the world is made of faith ~ and trust ~ and pixie dust. So I'll try ~ because I finally believe. I'll try ~ because I can see what you see. I'll try, I'll try ~ to fly..."

Jonatha Brooke "I'll try"

Fear thou not, for I am with thee; be not dismayed, for I am thy God; I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10

Now the word of the Lord came to me saying, "Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:4-5

For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. Psalms 139:13-14

Monday March 5th, 2010

So Why Stinkerie?

It's simple, really. It's the first thing I whispered against my newborn little Dumpling's temple as I held him alone for that very first time. "There's my Little Stinkerie." And all was right with the world as I brushed my lips across his delicate dewy soft newborn-pink skin and sniffed at his sparse smattering of downy soft hair. Corny and sappy, huh? I can't help it when describing my new Little Puppy. But don't get used to it - I have been told I am "irreverent."

Anyway, it just came out and he's been Stinkerie ever since. As well as Stink Pie, Stink Pot, Stinkey Pete, Little Stinks, Stinks, Puppy, Ducky, Baby, Baby Head, Baby Head Jenkins, Jack, Jack-Jack, Jackie Boy, Jax, Snork, Snorkis, Snorkle, Billy Boy, Billy Bob, Bobby Sue, Billy-Joe-Jim-Bob, Will, Willie, Willister, and the name given by my mentor turned friend Beth - Snake. When I write to her I call him either The Snakester or Slither! And of course, Dumpling, because he is my Little Dumpling - warm and soft and comforting. It's alright to combine comfort food with baby names, right? Have you ever watched the movie Where the Heart Is? If you have, you'll know why I mention this in my defense!

Long story short, you're likely to encounter any one or more of these names in a single post. Because I can. It's my blog!

Something to Consider

Bad decisions make good stories.

Something to Think About

With any pregnancy, there are concerns. With any child, there are worries. When you have a diagnosis of Down syndrome, you know what to worry about. You know what to look for. You have a plan of action. With your typical child, there is no limit to the things that can 'go wrong' or 'happen.' There's no place to focus your worry and concerns. 'IT' will always be out there, waiting. You'll always be on guard. Even when the child is 55 and has grandchildren. With Down syndrome we have a battle plan. With Down syndrome, there is a finite number of things that can go awry. With a typical child, there's isn't. It's a crap shoot. I'm sticking with the Ds and taking the other two back to the hospital for a refund.

Head Above Water

MusicPlaylistView Profile
Create a playlist at MixPod.com

New Ds Diagnosis?

There's an incredible new e-book available just for you, from Down Syndrome Pregnancy! Click on the purple writing and then the box on the right that says From Diagnosis to Delivery. You will be supported! You can also read our story below, but the link will answer so many of your questions right now!

Have you just found out from an amnio or CVS that your baby has Down syndrome? Or were there markers on your ultrasound that have the doctor suspicious? Have you just found out that the beautiful bundle you birthed just minutes, hours, or days before has Down syndrome and you don't know what to do now? Are you scared? Terrified? Worried sick? I sure was. And if you are pregnant with a brand new diagnosis and you are considering aborting this baby, you won't find condemnation from me. I visited that thought too. After stating quite frankly, "I can't kill him. I've felt him move," there was one dark and lonely middle of a sleepless night when I had the power to make this nightmare go away. I would abort. It would be simple. It would be over and we could return to our regular lives. And for that ten minutes or so, I had relief. Blessed, sweet, complete relief. Respite from the fear, the worry, the absolute terror in my heart. Peace, at last. And it lasted for about ten minutes. I knew I wouldn't abort. But for that ten minutes, I had a restful peace. And that little break, though brief, helped me get through the long months ahead while I terrorized myself by Googling every little thing I heard about Down syndrome.

I've always been pro-life. Not the screaming from busy intersection corners, shoving pictures in your face or blowing up clinics, or shooting doctors, pro-life. Just pro-life. In my heart. And I never imagined I would have my views tested. But they were tested. It's really easy to say I believe one way or another, but when it comes down to it, most of my views have never required that I put actions to my words. Until now. I'm glad in my heart that our baby with Down syndrome was never really threatened by termination. And not because I am pro-life. It's because Jack is so awesome. This little baby boy has been, from the beginning, an amazing little person. Worthy of life. Worthy of love. And so, so very beautiful.

Eventually I stopped looking up every disorder. I started reading blogs. There are usually a list of favorite blogs on virtually any given blog you're likely to find. Just click. They'll bring you to a whole other wonderful life of goodness and wonder and another list of that authors' favorite blogs. These are the real stories of the real babies and the real families who love them. To whom they in turn show great love and greater life lessons. We've been on this post-birth journey for just seven short months. In that seven months, neither The Beloved nor I, both being well versed and usually able to articulate a thought, have yet to define what Jack's spark is. What it is about him and his baby self that has pulled us all in and bewitched us. 'Magical' just doesn't do it justice. Divine? Sacred? Pure? All of these? I don't know. But I am sure am glad that I have my lifetime to figure it out!

Blogs don't sugar coat Down syndrome. They are the real lives, the real stories, the real challenges, the real struggles, the real frustrations, the real fears...mostly of the Mamas and Daddies, because quite frankly, as a good blogger friend once told me, our babies don't care that they have Down syndrome. They don't. They're good with it! Your baby, toddler, child is not going to live a miserable life because he or she has Down syndrome. And once you get over this agonizing terror, this utter hopeless despair rolling around in your heart and brain, your life won't be miserable either!

Do you know how sparkly diamonds are formed? Elements and minerals are subjected to crushing pressures and heat over a period of time until the diamond emerges as a result of all that force and heated pressure. You are experiencing that agonizing pressure, force and heat, not your baby. But it is your baby that will emerge as the diamond. And your baby will dazzle!

The nightmare was never the baby, or even the Down syndrome. The nightmare was the terror I couldn't escape. The burgeoning fear that bloomed anew with each waking moment. I found a blog I liked and contacted the author. She held my hand through all my fears, questions, worries, new findings, etcetera. For months. She was a safe place to admit that I was afraid I wouldn't love my baby. That I was afraid to lay eyes on him for the first time. That I would find him ugly. Diseased. Different. Wrong. I couldn't tell her anything, no matter how trivial, stupid, shallow, insipid, ignorant or truly valid, that she hadn't heard before. She was my lifeline. All the way from the other side of the United States! And now she is my friend! Let me be that for you.

So, no, you won't find condemnation here. But I will try to talk you out of it. Jack was born very healthy. I read for months about every possible thing that could be wrong with him at birth. I was extremely well versed in "Down syndrome" by the time Jack was born and I was waiting to give birth to a group of conditions rather than a baby. I was prepared for the doctors to come trouping in to tell me that my baby's heart was defective, or worse, that he had a common condition of the digestive tract requiring immediate surgery for survival. And then when he came almost a month early, I was extremely prepared for that long faced, sorrowful looking parade of mournful doctors. But it never came. Jack was born healthy.

So please, read my blog. Let me encourage you to keep your baby. Or, perhaps, give birth to him or her and allow your baby to be placed with one of the many families right here in the United States waiting to adopt a baby specifically with Down syndrome. Yes there are many couples out there waiting to adopt a baby because the baby has Down syndrome, not inspite of it. Seriously, this adventure has turned out to be so very, very incredible, that if I were a younger woman with more financial resources, I'd be nagging The Beloved to adopt another baby - with Down syndrome. It truly does ROCK!

If you are suspecting or have had it confirmed that your pregnancy is with a baby with Down syndrome, you've no doubt heard the laundry list of things that are likely to be wrong with your baby's health. I won't list most of them here because I'm sure you're sick of hearing about that list. I heard it too. From my doctors. So, so many doctors. Well. I'm here to tell you that none of these babies have all the crap wrong with them that the doctors will tell you about. Most pregnancies with a chromosomally abnormal baby spontaneously abort themselves. It's nature's way. If you've made it far enough, if your baby has made it far enough into your pregnancy to have testing done, doesn't it say something about your baby's fortitude? Your baby's will to live? Jack was born with four defects to his heart. All were so small, so insignificant that the neonatal cardiologist who saw him at birth only mentioned one of them, the "worst" one as "...so small it will likely heal itself within a few days." I only found out about the other three defects when I requested his birth records. At his six month echocardiogram, of the four defects, only one was certainly still present and described as "pinpoint." One was healed. As for the other two defects, neither the tech nor the cardiologist were sure they were even still present, and simply recommended follow up in six months. Jack is healthy.

I'll tell you something else. Most of these doctors who will tell you how bad your baby's health will be, how drastically your lives will change if you continue this pregnancy, how the child will as an absolute certainty have mental retardation, how your marriage will be jeopardized, how your other children will be affected, about shortened life span, it's not fair to the child, blah, blah, blah...have never birthed or raised a baby with Down syndrome. They don't have real life experience with the babies, children, teens, and young and older adults with Down syndrome that they encourage terrified mothers and fathers to terminate. They know medicine. They don't know life. Read this from a doctor who knows because he raised a baby with Down syndrome into a wonderful adult!

Yes, approximately 50% of babies with Ds have cardiac defects. Some of them, many of them, will require open heart surgery before they are 1 year old. Many of them won't. Like Jack. Some babies with Ds have what is called duodenal atresia. It's a malformation in which the esophagus doesn't connect to the stomach. These are the babies who have surgery within days, sometimes hours, of birth. And both this surgery and open heart surgery have advanced so far in todays' world that most of these babies are just fine. Babies born with duodenal atresia and require surgery often go home right on time, as if they'd never needed the surgery. Babies with open heart surgery more often than not, leave the hospital within four or five days. How incredible is that? Are you terrified of the medical expenses? Don't be. Medical aid is available for babies with Down syndrome in what ever state you live in. In California, Medi-cal picks up what ever is left after private insurance. If you don't have private insurance, Medi-cal foots the entire bill. Wouldn't it be nice for your own family to reap the benefits of all those tax dollars you've paid into for all these years for a change? And I recently found out that in California, any baby who has Medi-cal also automatically qualifies for WIC until the child turns five years old. There is a wealth of help and financial and social resources out there.

Speaking of which, I contacted my local Regional Center shortly after we got our amnio results that were positive for Ds. Now, Jack is healthy. He rocks. But there are some things that he needs now that will serve him well later in life as an adult with Ds. These are therapies. Jack gets Early Intervention, Physical Therapy, Occupational Therapy and Speech Language Pathology services, all in our home, one hour per week for each therapy. And this would cost a fortune. But the Regional Center covers it. It's what they are there for. Connecting babies, children and families with needs with those agencies who can provide the services. And those tiny little defects to Jack's heart? Even though they cause him no ill effects, they are his ticket to getting services in the home instead of at an office facility.

Another huge fear was how Jack would face his future. Would he be ridiculed? Made fun of? Is there the adult out there who does not have memories of having been ridiculed and made fun of? Fat? Short? Glasses? Freckled? Alcoholic father? Drug addict mom? Poor? Smart? The kid who peed her pants? Stutterererer? Lisp? Kids are cruel. It's a fact. And all kids everywhere get ridiculed for something. Will it hurt if when Jack gets called a retard? Yes. You bet. Just like when our other kids have gotten picked on for something. Will I go beat up that ugly kid and his stupid parents, too? I'll want to. Just like with our other kids. It happens. To everyone. We'll deal with it. I've started to pray daily for the little girl out there who will someday marry Jack. I've also started praying for the little boy out there who will first make My Girlie cry a tear in years to come. He's going to need it! I'm not sure to whom I should target my prayers for The Pod...the universe, perhaps? The point is, kids get made fun of.

The Beloved, once he was able to move on from the diagnosis, worried "Will he ever know the love of a woman?" So I researched it. And people with Down syndrome in greater and greater numbers are pairing off, getting married, and living independently. They work at jobs. They have friends. They have social circles. They have fun on weekends. They have support networks that provide assistance to them, beyond their siblings, when parents like us who are older, eventually go to meet our Maker. My flexible plan for Jack is that he will be out on his own at about 25. And I think I've found the baby girl I'd like him to marry. She's precious! But, Jack will likely have his own views and may well choose someone else. Danged kids! The point is, Jack will make his own way in the world. He will not be a burden to us in our old age nor to his siblings. Heck, he may wind up caring for one of us!

Something I feel ashamed to admit, even though I know it's a perfectly normal fear: I was afraid Jack would look so different, so abnormal, that I wouldn't love him. That I wouldn't bond with him. That he wouldn't be my own. From the moment I first saw him, he was mine. He had that tiny portion of my heart that had remained aloof, even though he'd been growing in it for 36 weeks already. And I've heard so many other Moms on the Ds pregnancy boards express the same fears, and at least a dozen other Moms chime in to reassure the fearful. It might feel shallow now, this worry about cosmetics - but it's real and fearful none the less. And it beats the heck with a stick out of worrying about where the kid will go to kindergarten! And funny as I find this little tid-bit...Jack is the only one of my babies who shares any resemblance, even fleeting, to me as a baby! How's that for a kick in the pants? Now I cannot get enough of his face. His feet. His elbows. His chin. It goes on and on...you'll see.

One thing that kind of gobsmacked me when I told friends and family that our baby had Down syndrome was a small amount of social isolation. But just a small amount. Two of my friends that I've known for decades of my life, one whom I've always considered kindred, have dropped completely off of my horizon. I've made contact. I still do. Who knows...maybe they've sailed off into the sunset to the West and one day I'll find them sailing back into my life like the sun rising in the East. I hope so.

So what else are you worried about? Seriously...write to me and tell me. I could have gone on and on for hours about the fears that plagued my last ever pregnancy. I am so sorry now that I wasted those first few months worrying about what would eventually be spoken out loud, and then the last long months worrying once we knew, but what else can you do when you're faced with such monumental uncertainty? Trust me when I say this, but this is as bad as it gets. As in it likely won't get any worse. Right now, where you are now, with the sick worry and fear that you can do nothing about, or change, is about as bad as it gets. Yes Jack is healthy. We haven't had to deal with multiple surgeries and conditions. But I have a huge network of friends in the Ds community who have had to. And they all say the same things. The nagging fears while they were pregnant was worse by far than the healing corrective surgeries their babies underwent to make them better. It's true. Read some blogs. Read my blog. They all say the same thing, and that is, to paraphrase, Babies with Down syndrome are just babies. Small people. Young beings. Infant humans. Who will grow into amazing children and awesome adults. And they will rock their own worlds. They just happen to have a little extra genetic material.

So please, before you decide to let go of that living being inside of you, read my blog and let Jack show you the potential you are carrying within you. Please. Showing Down syndrome in real life is the sole purpose behind inviting the World Wide Web into our private lives. It's my effort to show any scared Mommy or Daddy to be, that babies with Down syndrome are more like babies without Down syndrome than they are different. They're just babies!

With love,

Post Script: I've also found that since Jack has Ds, there are tons of opportunities, events, discounts and countless other resources for family events available to both him and his siblings and parents that would not be available other wise. Have you priced Disneyland lately? Jack gets a significant discount for his entire family! Do you love our National Parks? Jack gets 50% off for himself and everyone in his party for his entire life! The resources are boundless!