...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


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Saturday, December 11, 2010

My Head Is SPINNING!

Spinning, I tell ya! Of all the What did you just say? moments this past week has had, tonight's offering was by far, certainly the whopper. And it came from the mouth of My Beloved. Yup. The Dear Daddy himself, thank you.

Let me explain. We went out to get our tree tonight. It's up and waiting to "settle" it's branches a bit before the kids tear into it first thing tomorrow morning. After some grub and the usual sleepy time ritual, along with night time meds, The Olders were fast asleep. Jack, as is par for Jack in the later hours of the day, was in full swing with his bad self, rolling, rocking, jabbering, playing and having a grand old time on the floor with his toys. The Beloved asks, "Are you disappointed he wasn't a girl?" So I say that I'd initially really wanted a girl, but we got a boy and now that he's here, he's good. He's really, really good! I love my boy! I sit down on the floor next to him to play. And I said something about how girls with Ds are much more fertile than boys with Ds, so all in all, I'm glad that he's a boy. And that's when it happened. The Beloved asked, "Why? Do you think it would be bad if he had a baby? What are the chances that he'd get a baby just like him?" In my ignorance I said that with his kind of Ds it was almost certain that any baby he had would also have Ds. I have since researched more carefully, since I can't sleep yet even hours after that bombshell, and I stand corrected. The search results have not lent me any comfort.

I was flummoxed by the here-to-fore Voice of Reason having so very recently taken leave of his senses that I really didn't know what to say. Do you think it would be a good thing? To which he said, "Think about it. We've had so much fun with him, maybe he could have a little baby like him some day to love that would make him really happy!" Really? I ask. So if Jack has a baby when we're 75, that means we get to die when? When we're 135? Because if Jack has a baby, we're going to be starting all over again with a newborn at an even riper old age! To which The Newly Insane responded, "Look at him. He's got it going on. He's smart. He's better off already than some babies we've met. You don't think he'd know how to love a baby and take care of it?" He further went on to say that Jack would be capable of caring for himself and a wife one day, why not a little baby too. "And we can play with it and have fun with it and love it and spoil it rotten and send it home!"

S-P-I-N-N-N-N-N-N-I-N-G Who is this man? We had this discussion. In the middle days of my pregnancy with Jack I'd read a statistic the 70% of girls with Ds were fertile but that only 12% of males with Ds were capable of reproducing. My numbers may have been off, because it was all about the numbers before we had Jack in our arms, but we had both agreed that this baby having babies was not a good thing.

Okay, so now that I've snuck out of bed at 2:12 in the morning to research, the stress/relief ratio is about 50/50. According to most sites, males with Down syndrome can and do have babies with the typical 46 chromosomes, as do women with Down syndrome. What is uncertain, in the specific case of a man with typical generic plain old trisomy 21 who fathered a typically chromosomed baby, is if the Mother of this baby also had Down syndrome or not. The study didn't say. Neither did I find that of the women with Down syndrome who gave birth to babies with 46 chromosomes, were they fathered by men with Ds. Again, no information.

And there's the rub. What if Jack wants to marry and have babies? What if Jack does marry and have babies? What if Jack wants to have babies, but either he or his wife are unable? And if they are able, and do, are her parents going to come after us in the middle of the night with butcher's knives for encouraging our developmentally challenged children to reproduce? And what of the baby, or babies? Should we hope and pray for a typically chromosomed baby or one like Jack and his wife? Would a baby with Down syndrome be easier to care for than a typical baby? Would Jack and his wife be capable of caring for a typical baby? I don't know the answers to these questions. I shouldn't need to know the answers to these questions!

In November I'd planned on writing a sappy post called Gratitude about how The Beloved shines with Jack. It never happened, and I know I've been slim on pictures. But dang it, if life could just throw a few curve balls (Or basketballs!) somewhere else for a few minutes, I could get back to posting pictures! So the post about Gratitude isn't going to happen. I've said it all here. The Beloved fully believes in Jack, and as far as his Daddy is concerned, the sky is the limit for Jack. That's all I've got to say about it. Which is not to be construed as me being on board with Jack having babies. The jury will be out for a long time on that one.

2 comments:

Holly W said...

and that's exactly why we love our husbands....
and we've discussed Brooke getting married and having babies too...
and we've gotten no where as to whether it's a good idea...
crazy shit to think about, eh?

Melissa M said...

I don't know that hubby has even thought about it, but I am nervous about the thought of C having kids...