...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




Lilypie Second Birthday tickers
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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Monday, November 15, 2010

One Year Check Up

Today was Jack's one year check up! He got bored waiting for the doctor to come in, and discovered the crinkly exam table paper.

















































43 cm head circ

18 lb 7 ounces

27 1/4"


all labs were normal, including the thyroid level
wearing a size four diaper
wearing 6-9 month clothing, some 12 month sleepers with looooong legs hanging off his feet!
eating 8-9 ounces every 3-4 hours
eats 4 oz veg, 4 oz fruit, 2.5 oz meat per sitting
he's rocking on hands and knees
he has a supported sit for up to a minute, now and then as long as five!
he has one sharp tooth! Sometimes he also has a flat topped tooth, but it doesn't stay out!
he babbles all the time!

he makes all of the vowel sounds
b,d,g (guh),m,n,p consonant sounds quite often
he still makes a sound like someone's stepped on a seagull or a squeak toy
he still has my heart in his little grabbers

Sunday, November 14, 2010

Get It In Writing!

This is a long post. Long. And I promise there is a photo at the end. Please don't skip ahead or you'll ruin my punch line!

When we were expecting The Girlie, The Beloved started talking about doing another thing that he'd always wanted to do. He wanted a tattoo. But I thought it was just talk. I get the baby, he gets a tattoo. He never said what he actually wanted this ink "art" to be, and he never actually said that he was going to do it. Ever. Or now. Today.

When he called and said he'd be about an hour late, I really thought nothing of it. It wasn't an uncommon event. The fact that he gave me a heads to the delay of his arrival time was enough. And when he got home I was in the kitchen making dinner. And there was a look in his eye. Something in his expression. An elevation to his brow line. A hint of a snicker to his lips. A glint of mischief in his eyes. And then I noticed his posture. All of this noted in less than two seconds flat, while he poked his head into the kitchen. And he knew that I knew. "What?" he asked. I glared at him. I'd show him what! "Just let me see it," I said. "See what?" And I glared at him again. I was pissed. I did not want him to get a tattoo. I hated that he would mark his body like that. That he would mar it. With something so entirely permanent. And it didn't help that with every word out of my mouth, every steely eyed glare, every line of my face screaming NO! the gleeful jubilation in his eyes, in his entire being, just grew to enormity. And the best, for him, was yet to come. I had yet to see just what bit of "artwork" he'd chosen to forever violate his body with.

At first glance, My Beloved looks every bit the big scary biker. He wears Levi's. He wears motorcycle tee-shirts unless we're out to dinner or some other function. He wears biker boots. He has a mustache. And yes, he really does ride a real motor cycle. (Harley!) I like his thick curly hair to be just touching his shoulders, but for the last decade he's liked it trim and above his collar. And he's a big guy. My friend Ann still lives in terror of him until he jokes her into fits of laughter. My lifelong friend from school days still thinks the myriad of scars on his arms are from gang fights. Really? For the record, white guys don't get into gang fights! At second glance, he has an easy smile, a friendly jovial nature, and eyes bright with wit and laughter. He's a great guy. A good man. But you don't want him angry with you. He's intolerant of ignorance and doesn't suffer fools. Or ex-boyfriends. Or actors. Liberals. Arrogance. Thieves. Liars. Druggies. Cheats. People who ridicule or belittle others. Especially children. So I didn't expect him to commemorate The Girlie's growing life with hearts, flowers and unicorns. What he had chosen just made me sad. Sad. He won't let me tell you what it is, but I blame our Little's love of the macabre, their embracing of bones, skulls, ghosts, ghouls, plastic rats, spiders and all things Halloween on his tattoos!

By the time The Pod was baking, it was a forgone conclusion that he'd get another tat. I get the baby, he gets inked. And he told me this time that he was getting it done. When I saw it, I thought it was fitting for him, and at least this hideously ugly bit of ink was to celebrate a boy, not my delicate little girl. While I was no more fond of this tattoo, it was his body after all, and once he had that other one, why not this one? Why not just plaster them all over his entire body? Why not get "sleeves" or some on his neck and face? Why not? WHY NOT? Why not just shave his head and tattoo his scalp? He'd already defiled himself, so why not go all out? I didn't like it at all, but he was happy with it.

It was no surprise that with the news of Hannah's pregnancy, The Dear Daddy started thinking about another design. I will forever be grateful that time and finances were prohibitive, and that he wasn't able to get her tattoo done before we lost her. While that tragedy remains the single most binding together event of our journey with each other, strangely even surpassing our births, seeing her tattoo every day would just be painful. Hurtful. I hope and pray to my God in Heaven that our bond, our ties, our tethers to each other, do not require any more strengthening by the very particular and singular method of profound loss.

And here is where Jack and Hannah's lives seem to cross yet again. The design he'd had in mind for Hannah was to be forever put away, unfulfilled, never to be. Because Hannah was to be our last. There would be no others after her. And this is when I realized that The Beloved's ink was something more to him than a tattoo. It was personal. It was a living breathing thing. Fluid. It was so much more than expression of self through body art. I get the baby, he gets inked. And when we lost Hannah, The Beloved put away the design he'd made out of love for her. He tucked it away, far, far away, from his heart. And then Jack announced the fact of his being. And then the news of his diagnosis. Since Jack's pregnancy was so very precarious and tentative, we wanted to wait until his actual live birth to set his own mark on the canvas that had become of My Beloved's skin. Jack's surprise pregnancy, his diagnosis of Down syndrome, his miraculous birth, all set the stage for what was to be Hannah's design, to be just so fitting, so perfect for Jack. If I were allowed to tell you what his/her/their tattoo is, there would be a collective swelling, a chorus, one voice of "Aaaaaawwwwwww" echoing across the world wide web. It is just so succinct.

As we enter the home stretch of Jack's first year, The Love of My Life has stopped waiting for a shoe to drop and finally got his tattoo. I went with him this time. Jack came too and was the perfect little play date for the artist's seven month old darling little boy, and some mommy-chat time for me. I marvelled at his son's ability to sit up and crawl on his own, and his Mommy was bowled over that Jack says "Mama" and makes raspberries with perfect conversational punctuation! And instead of hating this tattoo as I used to The Girlie's, just accepting what would be The Pod's, I actually helped with the design and placement of this one. And it was good! It was right! And it is entirely personal and beautiful. No, I'm not going to say special. Ewwwwwwww!

While I was at it, working on this third and final of The Littles' tattoos, I started playing around with another design. I discovered just how entirely personal and intimate a tattoo can be. My goal was to incorporate all of Our Littles into one design. It wouldn't be obvious to the casual observer, but it would be meaningful. I had an idea. Then I had another entirely different idea. And if I could blend the two designs, it would be perfect. But Hannah, dear, dear sweet Hannah, thoughts of her kept hovering, lingering, wanting to be heard. Remembered. Included. And I figured out how to give voice to her as well. And it's good that I did, because this tattoo was keeping me awake at night. Evenings for two weeks were spent at the computer trying out different fonts, arranging and rearranging, changing, sometimes discarding an idea entirely. I was dreaming about it. Do you ever have those not-deep-enough sleeps before a big event, good or bad, where the same monotonous and endless dream keeps playing back over and over in your head on an endless loop and you never quite find a solution to the problem before you start the dream again? It was like that. It went on and on. For days. And days. And on the final day, the very last afternoon before this tattoo would become permanent in ink that evening, I figured out exactly what I was looking for. It was finally just right and I could feel it. I showed The Beloved and he said that he liked it, really liked it...but could it be done? That was the big question. But the tattoo artist said Yes, we can do that! And here it is...



Yes. That is my arm. My right arm. Where I can easily fold it over my heart. What started out as a desire to have something small, special, intimate and personal to me, for me, the simple word Beautiful in tiny, discreet blue letters near my wrist, bloomed into this. Go big or go home, right? Yeah, I clearly had what The Beloved lovingly calls a Clark W. Griswold moment. The immediate allusion to Jack is obvious My Beautiful Miracle T-21, but the underlying pink lettering refers to every one else. It's supposed to be hidden a little and not jump out at you. It's supposed to be noticed while reading the blue lettering, as in "Oh, there's something else here...underneath." In case it truly is as obscure as I was trying for, or if it doesn't photograph well, this is what it says:

Faith. Trust. Pixie Dust.

And this picture is right after I'd gotten it done, so it's still quite livid. As in LIVID. And painful. Stingy. So the pink will fade some. And it is much clearer in person...the blue is not blurry. Eventually (in 3 weeks) I'll add a spray of Pixie Dust over the entire thing, and much later (When I've forgotten about the pain of this 2-step torture) a little Tinker Bell may also reside above and to the left of the F. We'll see. Cuz this really hurt! As in it really %^$&#*@ hurt, hurt!

Faith for The Girlie, because she has so much of it. Faith in her Heavenly Father. Faith in her earthly Father. Faith in her baby brother. Faith in goodness and the belief that people will show their goodness if given the chance, maybe encouraged a little. Faith in hope, eternal hope. And for some reason, Faith in me.

Trust for The Middle Little. Because so much of his little life is built on trust. Trust in the doctors. Trust in those who guide him at school and in our home. Trust that he will grow from a good little boy into a good man. I sometimes just have to Trust that what I do with him is right, and even more importantly, not wrong. Trust that while The Dear Daddy's methods are often very different from mine, that there is always a bigger picture that he's aiming for, often one that I don't see until he shows it to me. The Middle Little doesn't yet have the capacity to understand God. To him, God is this giant, amazing, all powerful entity that you can Trust to make everything alright, but it's still best if you just leave Him to it and not try to get His attention too often. And, again, for some reason, he has an amazing Trust in me. Me. A woman and mother who once fell to her knees in utter despair, here in this room where I type my thoughts, siphoning my soul to the world at large, and angrily screamed at God, demanding that He show me how to mother this boy. Yes, Trust is the right word for him.

Pixie Dust is for Hannah. A new version of Return To Neverland was released in November 2007. The month and year that Hannah would have been in our arms if she'd made it to term. One of the songs on the sound track, "I'll Try" poked holes into my heart and let some of the grief spill out. It spoke volumes to me, for so, so many reasons. Try to go on. Try not to cry. Try to keep it all together while my heart was so broken. Try to have Faith. Try to have Trust. Try to believe in something, even if it was only Pixie Dust. And like Pixie Dust, Hannah will always be elusive and magical, something felt but not seen, real and intangible at the same time. All it takes is a little Faith, and Trust, and Pixie Dust.

And there you have it. In writing. I have marked my body. Marred it. Defiled it. Forever violated it. Entirely permanently.

And I love it!

I started to title this post "Tattooed White Trash," because my Dear Daughter hates the fact that I have done this to myself. She'll get over it. Maybe when she's 45 and wants to forever commemorate some miraculous event for herself. Like the birth of three babies that medical science said were never meant to be. Or in Jack's case, shouldn't be. Until then, Que sera, sera.

Our Buddy Walk was today. I will post about that later...for now I'm going to go cry in the bathroom, because this post was emotionally charged for me, and very difficult to write. Ciao!

Friday, November 12, 2010

Jack Turns One!!!

Jack and his presents!

"Oh my! Are these really all for me?"

"I like this birthday and turning 1 stuff!" Thumbs up!

The big cake with ugly dark blue writing.

Jack's mini cake with a better color of blue!

"What's up?"

"Ohhhhh...what's this?"

It took him no time to dig right in!

The candle didn't last long...

While The Dear Daddy and I sang Happy Birthday...

...Willie used the candle to stab the cake!

He still hasn't tried it yet...and this is probably the 30th picture!

The aerial view.

Still hasn't tried it...

...so I put some on his lip!

...finally tasting it...

...and it's gone!

Now he's discovered that he can feed it to himself!

"Mmmmmmmmmmmm!"

"Oh, this is good!"

"So is this hand!"

Another aerial view of the carnage!

Jack had a ball playing with his birthday cake!

We were falling all over ourselves laughing at his antics!

Eating it off the tray.

And I think that's how he got the other eyebrow!



Patti ~ If you are reading this ~ I promise, with my right hand clutching my entire hoard of chocolate over my heart, that no dogs were involved in the clean up! Promise!

Wednesday, November 10, 2010

Video Swallow Study

If the Monday/Tuesday saga wasn't bad enough, Willie and I had to be out the door at 5:30 am to make it to his swallow study at the same place on Wednesday morning. I had leg cramps in the night, but no where near as bad! The morning traffic stank, as always, but whatyado? We arrived on time at 7:15 and got checked in. They were ready and waiting for us. I was all draped up in lead apron and thyroid shields so I could hold him under the fluroscopy. They put a little lead apron on his "parts" so they wouldn't get irradiated. They got him all rigged up in a special seat, and when the tech gave the word, the beam came on. Willie's innards were lit up on the screen. Weird. She gave me the nod to feed him and started counting swallows, up to 12, and the beam was turned off. So far no aspiration with the thickened liquids. Now for the thin. The beam was turned on again and she counted 15 swallows. Beam off. Went to get the doctor. The final word is that he isn't aspirating during swallowing, but there is a rather large amount of residual sitting outside the stomach, even after ten minutes, after only 27 swallows. It is thought that he is refluxing this residual and may be aspirating it. They recommend Prilosec or Prevacid, and an esophogram, and smaller, more frequent feedings. They will fax a letter to his pediatrician in time for Monday's visit, and mail me a copy. We can have the esophogram done at home. We were home by ten am. For some sleep!

Tuesday, November 9, 2010

New Tooth & Optho

Having worked a 12 hour shift the night before, I just barely had time enough to scoop Willie up and toss him in the car and race down to the valley for his much awaited opthomology appointment. And we waited. And we waited. The waiting room was packed and and we waited some more. For hours. There was a young Mom with a baby stroller all closed up tight like you do when there's a newborn inside. Her eyes were closed and she was wobbling on her feet, swaying to and fro, ready to fall over. From my spot in the hallway, I kept an eye on her and on the waiting room. Finally, a seat opened up. I woke her up and she jumped out of her skin! She was asleep on on her feet. I told her about the seat and she went over and promptly collapsed into it with her arms fold protectively over the opening to the stroller hoods. Poor thing.

Another Mom asked me a question about Willie's bracelet on his foot. She hadn't gotten one. Did that mean her son Mason wasn't registered? Is that why they hadn't been called? Our appointment was for 10:45, theirs was at 9:00...neither of us had been called at noon. She went off to find out about getting Mason's bracelet and I promised to save her "spot" in the hallway. She came back 30 minutes later with Mason proudly wearing a bracelet. We wondered if that meant that they were now behind every one else, even though their appointment was for over three hours ago. We wound up visiting and discussing other long waiting room adventures, Down syndrome, kid's health in general, etc. Another Mom was there with her 9 month old baby. Her 12 year old child had Prater-Willis syndrome, and having heard me mention Regional Center a few times, she joined in the discussion. They hadn't gotten much in the way of services, and she had some concerns about her new baby's development. So, maybe this is why I was here so long...both of these ladies lived within 20 miles of me. The Mom with the new baby and the 12 year old needed help and wasn't getting any. I was able to fill her on on what she should be getting, and the best way to get her baby evaluated. At the end of our discussion, our names were called. Mason and his Mom wound up being called right after us. We walked out to the parking lot together and exchanged phone numbers!

Willie's eyes were dilated and he slept through the entire exam. The doctor, as always, had an intern with him and was very thorough and very informative. He answered all of my questions without being general and without treating me like a nuisance. He said DS kids and DS babies several times, but not in a dismissive way. Then it was time to wake Willie up so the doc could evaluate the nystagmus.

All in all, he said Willie's optic nerves are small, but not alarmingly so. The optic disk or cup is not hypoplastic. He is near sighted and will need glasses eventually. See you in 6 months unless you think he should be seen sooner? Well yes, I do think he should be seen sooner. If he's going to need glasses, I'd prefer to get them sooner, rather than later. He's already got disadvantages, let's ease some of those in a more timely fashion rather than wait. Okay then, see you in four months, and yes I will write a letter to your doctor to take with you today.

An hour later we were leaving. The Other Mommy pulled me out of hot water once again and raced to my house to see the older kids get off their buses. We got home at 3pm. The Dear Daddy got home at 3:15, and Beth arrived for Willie's OT at 4. She left at 5 and at 5:05, I was in bed for a much needed nap! At 6:30 I hobbled out of the bedroom, down the hall, calling The Beloved's name, crying, "Help me leg cramps bad really bad both legs really really really bad." It happens every time I'm up for a 24 hour stretch. Having gotten up with The Littles Monday morning at 6, I was about 35 hours in when I got my first sleep! The Beloved massaged, The Girlie ran for the "small square white bottle on my desk" of Hyland's leg cramp tablets with quinine, The Middle danced around in a panic because I was clearly dying, The Girlie came back equally panicked "Mom! There's only two!" Think fast. "In my work back. Top zipper. Get more. Now!" Sent The Middle for water. The Beloved popped the two tablets we had into my mouth without water. The Girlie returned with the bottle. Fumbled. Dropped it. I'm still crying and moaning like the tormented woman I was. The Middle had returned with the water but was still deathly pale, because I was, after all, to him, dying. The Beloved retrieved the fallen bottle that got kicked under the couch in the scuffle, but that meant he had to stop rubbing my legs. The Girlie, crying. "Mommy. I'm sorry." She never calls me Mommy. Just Mom. The Beloved, "Every one calm down, it's all okay. We'll fix this!" The Middle not convinced. The tablets in my mouth. The water. The rubbing. And three minutes later all was calm. Fine. Pain free. Dang! It was me that felt like rabid dogs were ripping the muscles off my legs, but The Littles needed comforting and circled around for hugs and cuddles. I went to hug The Beloved for saving my life!

And after all this, we didn't even get any cute little glasses for Willie. Dang it! He did sprout that bottom tooth today though! It looks like a normally shaped tooth, right next to the spikey sharp one, and about 3/4 of the tooth surface has erupted. He's going to look funny with a normal tooth and a sharp spike right in the bottom middle of his mouth, but I can't wait to see his smile when they're both in!

Sunday, November 7, 2010

Yeah, It's Me Again

So a few days ago, The Beloved and I were sitting on the couch with Jack, or Waby as he's now going by. Waby, the Beloved and I were playing. I'd called him at work immediately last Wednesday to report to him that "Your son is up on his hands and knees ROCKING!" And every day since then, when he's on the floor playing with Waby, I tell him, "Honey, teach him how to crawl." "Honey, show him how to crawl." "Honey, make him crawl!"

We were talking about how to celebrate the Waby's first birthday. Incidentally, The Beloved gave him that name ~ not his Mommy who loves him way too much to ever do such a thing. So, we've decided on a small little immediate family thing Friday night, his actual birthday, and we'll have cake, ice cream, 1 little candle (!!!!) and presents. The Buddy Walk is two days later, the next Sunday, so we're saving our party hats for the 20th of the month, hoping we won't be tired and cranky for party day. If you're in the area between noon and 6 pm, please do stop in for some cake and ice cream!!! Really...come on over!

So out of the blue, tears are welling in my eyes and I'm trying hard not to let The Beloved see it. But, he knows when I'm upset, even though I was really out of his line of sight, sitting somewhat behind him holding Waby. It's like the air changes or something. He just knows. And he's concerned. So I spill, once I trusted myself to speak and not squeak. I tell him that I'm just now realizing that Jack won't hit any of his milestones before he turns one. The Older Littles took off walking on their first birthdays. Not days before. Not days after. On their first birthdays. We have it on film and on video.

So...The Beloved being The Beloved, said that we knew he would have delays but that he's doing good, so let's not be upset by it. To which I say, me being me, that yes I knew this, and I'd adjusted my sights on smaller goals. Like crawling. Or at least sitting, for crying out loud. To which The Beloved pulled out his grizzly bear and said, "Don't be like that. He's already been hit with more than his fair share of hard knocks, don't put more on him. Cut him some slack." Wow. Not quite the support I was looking for.

So, we agreed that yes he is doing well and that he's healthy, and that it won't matter one whit in five years that he wasn't crawling, sitting, walking on his first birthday. But I was still sniffley. So The Beloved reeled in his claws enough to say, "I know you're a little upset that he's not doing everything the other two did, but try not to be upset while you're holding him because he already knows when you're sad. He loves you so much, more than any one else, and I don't think he understands when you're sad. I don't want him to think it's his fault." Dang. So I said, in my own defense (He was that adamant about it!) "Well it's not as if I walk around all day sobbing with him in my arms. You're just now hearing about this for the first time!" He says he knows, "Just be careful with him, I love him so much."

So yeah, it's me again, struggling just a little with the delays. Any other day of the week, I'm fine with it. I'll be fine with this too. As The Beloved pointed out in a more gentle and kinder tone, he's going to be our little baby longer than than the other two were. And that is a fine thing. Fine, indeed.