...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

Wednesday, September 30, 2009

Dr S 30 1/2 Weeks

Today The Girlie and I went for our visit to the Beloved Dr S. Today My Little Snooks weighs 3 pounds and 12 ounces! Dr S says his growth is right on track. There is some shortening of his arm bones, but not the leg bones. His brain and kidneys are still the same with no worsening of the dilation. Dr S says that the mitral valve regurgitation has resolved, but there is some evidence of slight tricuspid valve regurgitation. Slight. And we have new pictures of Baby Face!

My baby shower is set for November 14th! The invitations will go out shortly. I've been frantically searching for the dress I wore for both of The Little's baby showers but so far, no good. I cannot imagine I would have thrown it away, even with the weight loss, but I cannot find it!

The Beloved and I have been discussing names. So far we have Benjamin, Theodore and some variation of William Wallace. We also like Amadeus of the awesome composer Wolfgang Amadeus Mozart. I'm still liking Jack. And there's a favorite game of mine that I never thought I'd ever get to play again! I make up names and deliver them to the curious strangers who are brave enough to ask, "Do you have a name yet?" This weeks winner is Eggbert Wyborn Ethelwulf! I deliver that zinger with a straight face and suitably proud glow, watch the person's face crumple and try to recover with a lopsided smile, and then walk away stifling giggles! It is truly evil, but it is so much fun!

Wednesday, September 23, 2009

The Tour & Monsters

Tonight I toured the birthing center at the local hopspittle where the Jackster will be born. It was quite an awe inspiring moment to walk into the birthing room and see the warming table all decked out and waiting to receive a fresh baby. I won't be delivering in one of those rooms because I'm having another cesarean, but the table will be the same exact thing waiting to receive our pink, wet, wiggly Baby Boy. If all goes well and he isn't whisked off the the NICU right away. Yes, that's what I thought as I approached the warming table. This worry is killing me. Next the nurse giving the tour walked all of The Waddles down the hall to see a room we'd be in after delivery. While we walked, another older mom sidled up to me to ask if this my my first or last. She mentioned that she thought it was her last because she was 43. I said I was 44 and we engaged in a little joking commiseration about how much harder it was on our bodies at our ages. She seemed open and friendly so I asked if she'd had any prenatal testing. She got a look on her face like maybe I'd farted and said "Oh noooo! We would never do that!" Clearly, the only people who test are monsters. "We're Christians," she now said with a pinched face, "We don't do that!" I let the space increase between us and moved to the side and as others came between us I muttered "Oh." And for the remainder of the tour I stayed as far away from her as possible. The way she said those few words made me feel dirty. Her words made me feel unworthy. Unclean. Why I felt this way is beyond me. We are Christian. We opted to test. We braved The Hard News. I started researching right away to find out how to care for My Baby with Down syndrome. And I've stumbled upon stories that sometimes battered my soul. Some families who do prenatal testing are given devastating news. Their babies will not live. The few that do survive pregnancy will survive birth by a few hours at most. If you can stand having your heart broken, you can read about Sweet Little Eliot. Just seeing his picture while trying to create a link has me crying and feeling deep soul wrenching pain once again, and I didn't even read through the story this time. That family did indeed get devastating news. And they still chose to give their Dear Little Eliot a chance at life. Stories like theirs have made me come to know that Down syndrome is so totally doable. People who choose to test are not monsters. I don't know why that woman's words made me feel like filth, but in the end it just made me even more protective of My Sweet Spud.

Saturday, September 19, 2009

DSALA Barbecue

This was a big day. I took The Girlie with me to the DSALA New Families Barbecue. I left The Middle at home. I didn't want to have to explain 552 times why this person looked that way or why that person spoke funny or have to field a million other questions. He's just 7 years old on September 14th, and very inquisitive. He doesn't really have any idea what Down syndrome means. Showing him what Down syndrome looks like would not be helpful for him. He would think nothing of asking someone "Why do you talk like that?" Or, "How come your baby looks funny?" He is autistic, and while he is extremely verbal and social, he very frequently lacks the the ability to determine what should not be said out loud. I am quite certain that he would stare. Anything he sees that is new and different will often be described in great detail, with adjectives most adults don't possess in their vocabulary, in a loud excited voice. And he loves an audience! I can easily imagine we might have been invited to leave NOW after one inappropriate comment drew attention and an audience formed. The boy loves to entertain and while he often displays insight and compassion beyond his years, he is just 7 and just as frequently can be as thoughtless and outspoken as only little kids can be. I didn't want to have to police him that day and I didn't want him to have a miserable time being under constant surveillance.

I took My Girlie because she has had an immense interest in the blogs I've looked at, especially of the pictures of the babies with Down syndrome. She was frequently my little sidekick those long summer months while I trolled the Internet looking for information. If there is anyone as worried about bringing Jackie Boy home, it is my sensitive Little Girlie. She turned 10 just days after we discovered our pregnancy, but she is the child who worries and frets over concerns in their minutia. I thought it would be a good environment to expose her to the facial features and the odd speech syntaxes of children who have Down syndrome. She is also on the autism spectrum but she is the quiet and introspective kind. She is the gal who hangs back from the crowd until she is comfortable joining in, and I knew for certain that when she had questions she would take me aside and whisper them. And I knew there would be questions. I'd already been telling her that The Dumpling may well have a feeding tube in his nose. He might eventually get one in his tummy. He might need to have a clear plastic tube under his nose to give him oxygen. He might be really soft and floppy. He would likely have a flat nose and the almond shaped eyes that tilt that she'd seen in so many of the pictures we'd found online of babies with Down syndrome. This would be a safe environment to expose her to all of this and more, and she did indeed get to see that some of these babies and toddlers had this equipment, and that it was okay. We'd spent the hour long trip to the valley discussing what to expect.

What I didn't expect was that she would find an instant friend within minutes of arrival, but that is exactly what happened. These two pre-teens hooked up and were together constantly until it was time for us to leave. When My Girlie admitted that she had trouble understanding her new friend, she just patiently started over and repeated things until she was understood, sometimes just saying them in a different way.

I also didn't expect that the little girls Mom would embrace me with such love and compassion. I was one of two pregnant women expected to be in attendance, but I was the first to arrive, hours before the other woman. So my new friend and I sat at a cozy table under a shady tree sipping water and getting to know each other. While I told her about my pregnancy and concerns for My Baby, she told me about her experiences with her own sweet girlie and the Down syndrome community in general. At least twice while I was speaking, her eyes welled up with tears and spilled over. It was like she was feeling my pain and fear in her heart. And she didn't try to placate me with empty promises. She told me what to expect and that it was going to be much different than anything I could imagine so far. She said that no matter what problems arose at his birth and after, there would be a support network to help us. She said I would find the strength I needed and that the DSALA would always be there with answers, support, personal visits if needed, and all the encouragement I could want. She said that Jack would be more like my other two babies than different. And she insisted that Jack would emote more love and devotion than I could fathom, even more than either of The Littles had. She was so wise. She was also honest and compassionate with me. She never minimized my concerns and she embraced me from the moment we met. When I finally said good bye to her at the end of the evening, amidst hugs and well wishes, I told her that she'd been a true blessing being the first person that I met. And she was!

Now we didn't sit under that tree the whole evening. She invited a woman she knew with a 5 month old baby girl over to join our group and after a few well placed questions designed to make me feel comfortable asking my own questions, she wandered off and allowed us to get to know each other a little and for her to let me hold her baby! This was my first ever experience with a little one with Down syndrome. And she was so very, very much like any other baby! Sweet, soft, wide eyed, and beautiful as only a baby can be! And then another newer mom joined our group and she also let me hold her almost 6 month old little girl. Again, she was just like any other baby. She was a little softer and had less muscle tone, but she was a sweet bundle of babiness and goodness, just like any other baby! Between the two of them, they shared their pregnancy stories and birth stories and answered a million questions from me. They explained what had been difficult and scary about their babies' health at birth and now, what was helpful, what wasn't, how to deal with families who were scared and friends who didn't know what to say, and just made me feel better about everything. They made me feel that just maybe it was going to be alright after all.

Then I wandered around meeting other families while My Girlie and her new friend sat together in a hammock swing sharing girl talk. The people I met were encouraging and helpful and embracing. Most allowed me to hold their babies. I don't think anyone said no, but I didn't ask everyone either. Some babies were eating, some were sleeping, but all of their parents shared information and encouragement. When dinner was served I loaded up My Girlie with plate and a soda and she quickly joined her new friend at a table to eat. I took my plate and found a space at a table and sat listening to the conversation, joining in at times, but mostly just sat watching these people who had managed to go on with their lives, mothers who continued to keep track of their active typical children while bouncing a baby with Down syndrome on the hip, men who continued to be loving husbands and attentive fathers, couples who remained a strong unit, people who were still living their lives. Their good lives. I was encouraged. Mostly I was relieved. We would be alright. Looking at these families, I thought we might just be better than alright!

Sunday, September 13, 2009

Lazy and Large

I've gotten really lazy about keeping my journal, but I just can't seem to whip up enthusiasm for much these days. I'm not sad or depressed, I am just really tired all the time. At the moment there is very little that feels as good as laying down in my feather bed, bunching up my goose down comforter and snuggling into my eight goose down pillows. With the fan and the air conditioner on!

Today I am 28 weeks along. If The Baby Dear is born now he will have a good chance of survival. I spend a lot of time researching still and reading blogs of other families with a baby who has Down syndrome. It's encouraging to see their pictures and read their stories. I'm getting a better idea of what to expect when Baby Dear comes home. The Beloved and I were talking about it this evening. He expressed more of his concerns. Will he get picked on? Will it be worse or more hurtful than for the average child who gets picked on? Will he even know he's being ridiculed? Will he be able to have a job a little more meaningful than the Wal-Mart greeter or a bag boy? I have to admit that I've wondered this very thing myself. Then he voiced the concern that nearly broke my heart. "Will he ever know the love of a woman?" I have read several accounts of people with Down syndrome getting married so I pulled up a few from the net so he could read them. Of one of the couples, the young man is actually an accomplished concert pianist, but he also plays several other instruments quite well. He and his wife live independently. After The Beloved read the info on the net he sat back and said, "We'll just have to work hard to make sure he gets all the therapies you've been telling me about and help him to live as normally as possible."

I'm still seeing the doctor every week and having NSTs every Tuesday and Friday. And I've had to do another 24 hour pee test. It's cumbersome to haul those two giant bottles into the lab, but the worst part is having to remember to pee in the cup in the middle of the night, and then have to transfer it to the container instead of just jumping lumbering back into my squishy bed.

And I do mean lumbering. I have had to resort to a step stool on my side of the bed. Okay, so the bed is a full 38" off the ground, but before I got pregnant and gained 50 gallons of fluid, I could take a running jump from the doorway and still land in safety. And yes, I have actually done that running jump thing. On occasion. Now I can't climb into my own bed without the step stool and if I attempt getting in on The Beloved's side of the bed, that quite gracefully involves his hands on either side of my broad expanse of butt to hoist me up. Really makes a gal feel pretty! Especially when The Beloved takes a few steps back after I land just in case that tremor and rumbling sound is a precursor to the bed falling down. Yeah, I feel pretty!

Saturday, September 12, 2009

Lions, Tigers & Bears

The Girlie has lovingly ensconced her stuffed animals into each set of equipment. There's a doll in the swing, a bear in the bouncer, a puppy in the stroller, and another bear in the car seat. I'm surprised she hasn't yet wrapped up a dolly to put in the crib! And the cradle too! She's really having fun with this business of preparing for her New Little Brother. Sweet girl. The Boy-O often brings me a book that he says he wants The Baby to have. So, I send him down the hall to find a good spot for it on the book shelves. He's preparing too!

Sunday, September 6, 2009

Bad Dreams

With so much tumbling around in my head, I don't know where to begin! Keep reading and you may contact the local authorities in my area to send over the men in the little white suits! I had a nasty dream a few days ago. I'm used to the very odd and bizarre dreams of pregnancy, but this was over the top, and I think it was rather telling. The kids and I were at a BBQ somewhere. All three kids. Jack was a platinum blonde toddler - no I did NOT get to see his face! There was a little blonde girl about six years old, and an old man, and they were yelling at Jack. The old man was a morph between one friend's dad and another friend's dad. They were yelling "Sit!" to Jack and pointing to the dirt ground like you'd do to an errant dog you hated. Everyone turned to stare. There was such hatred and venom in the little girl and the old man. I reared up into my mother bear and stormed the man, backing him into a wall. I demanded to know was he going to play nice and treat ALL of my children like human beings, not animals. I was acutely aware of the fear rolling off of Jack and a scared mewing sound coming from him. The Girlie and My Boy-O surrounded him in their arms. The old man was scared and backing away from me but I stayed with him, towering over him. In what can only be the wonderful magic of dream graphics, his thin wispy hair was flowing over his balding head and his jowly cheeks were flapping in the wind caused by the force of my words! Neither of my friends dads are bald, but there it is. I woke up after demanding "Answer me old man!" Quite a nasty dream, straight out of the "Pit of Fears." I think the old man was a morph between my friends dad's because in real life, if you make eye contact with either of them, you are filled with loathing and horror and go take a long hot shower in a hopeless attempt to feel clean again. Okay, so that's dramatic, but they both have still, cold, dead, reptilian eyes. Shudder. I was glad to wake from that nightmare.

Saturday, September 5, 2009

27 Weeks, Closets, Baby Gear

Tomorrow starts my 27th week. This is officially the last day of my second trimester and I'll start the third tomorrow! I'm still trying to adjust to the fact that I'm pregnant and now I realize that Baby Dear will be here before I know it. In my arms at last. It's also my Dearly Missed Mother's birthday. She would would have been, should have been, 77 years old. I miss her terribly, but I'd like to think she'd be happy with the life I have, with my career, with My Beloved, with the Littles, and I know she'd be supportive with The Newest. Dang, we need to name this kid! We have discussed the name Kenneth. The Girlie hates it - vetoed it immediately. The Middle is still pushing for a name one letter away from his. I vetoed that for obvious reasons! I already get their names confused as it is, and I often have to resort to "You! The one I'm yelling at!" And while The Beloved and I liked the name Kenneth in the evening, by morning he wasn't so sure anymore, and I have to admit that after kicking the name around a bit, I am not so keen on it anymore either.

Miss Susie helped me hang the brackets in the nursery closet. And then we installed the closet bar. That turned out to be another hammer-whacked-knuckle, freshly-applied-paint scraping event laced with much cussing. Again, on my part. But I did manage to avoid injuring Miss Susie with anything this time. The girl knows how to duck and she learns fast! Then we removed the closet bar when I realized it would have to come out in order to install the shelf above the closet bar. And that was accomplished with more knuckle whacking, paint scraping and requisite cussing. And then we re-installed the closet bar. And we put in a shelf about 3' from the closet floor to eventually hold bins of toys on top and below. We'd already figured out how to best install the shelf based on the aforementioned shelf. But this time it was only three feet off the floor and the shelf had to be clipped into the brackets from underneath. There is no comfortable position to either bend or squat when your midsection is the size of Jupiter and your butt is the size of - well, let's not go there. My girth prevented being able to hold the shelf because both the shelf and I would not fit in that closet, even with the doors removed and still be able to hold the shelf flat. So, Susie held from above while I crab-crawled on my side, absolutely unable to lay on my back and still be able to breath, to clip the shelf into the bracket. When we were finally finished we stood back to admire our handy work. I'm pretty sure I heard Miss Susie mutter an expletive under her breath. Okay, so she said it out loud. I've been a bad influence on her.

While The Middle napped, we left Miss Susie in charge and My Girlie and I went out to buy baby gear. I thought it would be a good to celebrate my Mother's birthday by doing something fun with My Own Girlie because I know she would have loved her so much. We had to go to several different stores, but we found the Winnie the Pooh swing at one store and the matching car seat/stroller combo at another. Then we went to yet another to buy a matching bouncy seat with a gift card we'd received from neighbors! It was tiring driving all over town, but it was a fun trip and it was nice to spend some time with just The Girlie and I. She was especially delighted when I headed toward the baby clothing section. I have the oddest feeling that I just can't get over. I keep thinking we will miss our baby shower. So...we'd better have some clothing! Between the two of us we picked out 9 sleepers and outfits and another pack of tiny white socks! My Little Girlie was thrilled to be part of the baby clothes selection process!

Thursday, September 3, 2009

PHC, NST and Curtains!

So yesterday I went to the PNC for my regular check up. Again with the BP and the rechecks. Eeesh. Saw the doctor. No new orders, except that now I will be seen every week until I deliver, in addition to the twice weekly NSTs.

I spent the late morning sewing curtains for the Jackster's room. When The Littles got home from school we took another stroll along the dresser under the window to measure, mark and drill and hang the curtain rods. The Kidlets were a little grumpy that I had to iron all three panels before I hung them, but they were really tickled when they got to hold the ends while I threaded the curtains onto the rods. And of course, The Girlie maintained her position glued to my butt in case I might fall, while The Middle kept the look of distress pasted to his face in anticipation of me falling! News Alert: Woman safely disembarks from 2' dresser without injury. Film at 11!

And today I took my forth trip to the PNC for our twice weekly NST. All was well! Baby Boy wiggled away, the tech adjusted our straps, Baby Boy wiggled away, the tech adjusted our straps, Baby Boy wiggled away...

Tuesday, September 1, 2009

Cradle Linens

I started my day bright and early at the PHC for my Tuesday NST. Everything looked good and I actually fell asleep sitting there listening to Jacks little heart thumping away.

I went back to see the endocrinologist in the afternoon to review my labs and get another insulin adjustment. This time he says I don't need to come back for a month unless I see my blood sugars trending up. He said to call if they trend up and that I can increase both types of insulin by one unit until I can be seen. He said he wouldn't be so liberal with anyone else, but since I'd already indicated on my graphs which days I'd adjusted my dose independently, with good results, he was confidant that I'd keep my numbers in a tight range. He only wanted to see me sooner if I couldn't keep them under certain levels and needed help. I wasn't sure if I should be flattered by his confidence in me or neglected!

Once home I took a nap and then spent the evening measuring and cutting and pinning and sewing while I waited for The Dear Daddy to get home. The fabric I'd found while cleaning out the garage was big enough to make 6" bumpers, two sheets and a quilt for the cradle! I was pretty happy when I got it all in the cradle and stood back to admire it! Now our Little Bunny Boy will have a place to sleep in our room!