...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

Monday, August 31, 2009

Declarations of Love

The last time My Love comforted me through a painful discussion, he said he knew I would be able to love this child. Tonight, quite unsolicited, he said he would love the baby too. He has refused to watch or read any of the information I've gathered, but he is accepting of The Littles learning to sign. Later he was holding me and rocking me back and forth and said he'd never be able to convince me of how deep his love was for me. He asked again, "How are we going to get through this?" I said simply, "Together."

Earlier today: Every time My Girlie catches me weepy she says the same thing, "Mommy (she never calls me Mommy except for these times, and only since Jack) I'm sorry Jack's going to have Down syndrome, but we'll all be okay. Jack will be loved. He already is!" She doesn't understand the hormones of pregnancy, that I might be weepy because I'm hungry and nauseated, or worried, or that it might be because it's Tuesday! She's always so quick to throw her arms around me and Jack, ready to comfort!

Friday, August 28, 2009

Endo & Our First NST

Yesterday I went to see the endocrinologist, and as always, I sat there from 1:15 until 4:45. Once again, I was the last appointment. He reviewed my labs, stuck my finger, reviewed my blood sugars and increased both of my insulins. And of course he ordered more labs! I've never felt like such a pincushion!

Today was a little more fun. We had our first Non-Stress Test, Jack and I. I am 25 weeks and 4 days along today. Basically I check in, go pee in a cup and then sit there and wait. Then they call me in, check my blood pressure, tell me it's too high, poke little dents into my feet, legs and thighs, weigh me, check my blood pressure again, tell me it's still too high, check my pee, check my blood pressure again and tell me it's still too high, then check my blood sugar and tell me that that is just fine. They review my meds and send me back out to wait. So I wait, and then they call me back and Jack and I get pink and blue straps wrapped around us with some gel. We sit in a comfy chair with 'our' feet up, the NST tech pokes little dents into my feet, legs and thighs, then she checks my blood pressure and clucks her tongue. Guess why? My blood pressure is too high! So I sit there for 30 minutes with my feet up listening to the rhythmic thunk-thunk-thunk of Jack's heart until he moves away and the tech repositions the straps. Fifteen minutes in she asks, "Is he always this active?" as she repositions the straps for the sixth time! The tech checks to see that Jack's heart beat is increasing when I push the button to indicate that I've felt movement and then after 30 minutes she pulls the whole strip off and goes to show the doctor. He checks it and signs it and the tech comes back to tell me I can go. Then we struggle for 20 minutes trying to lever my bloated semi reclining body out of the comfy chair. Eventually they call the fire department, walls get ripped out, heavy equipment gets called in, the channel 4 News van arrives, a flatbed truck pulls into the lot...

Wednesday, August 26, 2009

What Have We Gotten Ourselves Into?

The Beloved and I were sitting on the couch relaxing when it seemed to him to be a good time for some discussion. Not so much for me, but I have to take it when I can. He's still of the view that I decided to "do this" without any say so from him, so he just has to deal with it. "I know you and the kids are all excited about this so I just have to go along with it," he said calmly. I said "Yes, the kids are excited, but me - not so much." It had already been a long full day of beating myself up about this Ds diagnosis, and I just wasn't feeling up to the task of another baby with challenges. I'd spent the entire day playing the "What If" game where you question everything you ever did, said, thought, or thought of doing right up until the diagnosis.

But since he was willing to listen, and I had his attention by saying that I wasn't all that excited, I decided to make it count. I told him I was terrified of this baby. I said that since our other two already had special needs, it seemed monumental to me to have another one with special needs. I said I didn't feel up to it. That even if the other two were normal (starting to hate that word) I just didn't think I could rise to the challenge. I admitted that I am already too tired to take on the whole medical arena as it is, and there is a trend to brush aside babies with Down syndrome because they are viewed as worth less effort than typical babies. I said I was afraid that Our Baby would be brushed aside when he needed something. And would I even know what he needed?

And I admitted that I had come to detest seeing babies out in public. Normal babies. Because Ours would not be. And it hurt. And there was nothing I could do about it. And for all of my pleas to God, he'd decided Our baby was good as is. He said, "Well, the decision has already been made. You'll just have to do what you have to to make sure he has everything he needs." By now I was sobbing into my hands in a pool of snot. True to his normal self, he came over and folded me up in his strong arms and held me against his broad chest. "I'm getting snot all over you" I sniffled. He said he didn't care and went on to say all manner of kind and comforting things. He would not have comforted me just because decorum required it, and he has never been one to say things he doesn't mean. "I told you before that you are the strong one," he says into my hair. He has said that to me before, right after my stroke just 9 months ago, but it's simply not true!

I am NOT the strong one. He's always been the stronger one, the sensible one, the one I go to when I don't know what to do, the one who always has the right answer, and if not the answer, at least a good plan. So, after much rocking and swaying and comforting, all seemed well. Or at least better.

Monday, August 24, 2009

25 Weeks, Shopping & Missouri Barbecue

Today My Girlie and I went to meet My Big Sis at Babies R Us! It was so much fun! I finally felt free to buy a few things that we'll need. The nagging whispers are still there somewhere, but they are getting quieter and less upsetting. And it was really good to get to spend some time with My Big Sis! The Girlie, The Big Sis and I wandered over every inch of the store. It was really fun to watch My Girlie marvel over how tiny the baby clothes are. Of course she wanted to buy two of everything and had it been up to her we would have needed a moving van to transport the loot!

As it was, I'd already been going over my selections to make sure that I wasn't buying anything frivolous, that it was all stuff Jack would genuinely need. It really kinda sucks trying to outfit a new nursery while not earning my share of our usual household income and I'd had to tell The Girlie too many times that we couldn't get this or that yet because we couldn't quite afford it right now. Maybe later, I'd say. The solution was to let her choose between a selection of things I'd picked out. She made the final selection of bath towels and wash cloths, receiving blankets, crib sheets, this baby wash or that one? The tiny blue hair brush or the white one with bunnies on it? She even made a very deliberate decision of which water proof crib pads to buy: embossed stripes with a soft flannel top or embossed sheep which turned out to feel softer than the flannel? Sheep of course! Soft sheep! When we got to the register, My Big Sis emptied half of my loot onto the counter and while I was gobsmacked by a pyramid giant boxes of diapers, she paid for it before I even realized what she was doing! What a wonderful blessing! Soooo...we added two of the huge boxes of diapers to my loot. And I mean huge! These puppies have 264 diapers each!

A big THANK YOU to My Big Sis! Even more than the generosity of her incredible gift, it was an affirmation for me that Our New Little Baby is anticipated, will be celebrated, will be welcomed into loving arms just like any other baby. He has Down syndrome. And he is already as loved as he can be! I love you Sis!

After Babies R Us we hit a clothing shop to buy a few outfits for the Wee One. And then we went to my favorite barbecue place for a relaxing sit, happy chit chat, and the most awesome Missouri barbecued ham and beef sandwiches to be served on famous garlic toast ever! They are that good. Very little can compare to the sheer bliss that can be had when a pregnant woman gets to eat what she craves! A collective happy sigh went out at our table as we wrapped up a wonderful morning and afternoon with My Big Sis and My Girlie!

We arrived home from the valley just in time to welcome The Dear Daddy from his day at work. I surprised him with a yummy meal brought home from the restaurant - it's his favorite too! We had a relaxing evening and The Littles were happy and getting ready to settle into their beds with good night kisses and hugs and movies. The Dear Daddy always spends some time with each of them before they get their final tuck-in for the night. He was coming out of spending time with them when for some reason I fell apart.

We'd passed in the hall and I was fine, but when he reached for me I fell into his arms sobbing. Maybe I was over tired from our long day. I was certainly hormonal. Maybe it was the renewed tenderness between us. Maybe it was that my body just felt so awful all the time. Maybe it was simply that I was worn out from worrying and feeling constant dread. Maybe it was all of that. But we sat, we held each other, I sobbed and he listened. He stroked my back while I spilled my fears. He retrieved Kleenex for me when snot threatened to take over. He got a basin for me when I nearly brought up my lunch. He got me water. He'd heard me before, but I think he really understood exactly what I'd meant when I'd said that I also felt that I'd had no choice but to keep the baby. I also said that it was wearing me down to feel torn between the two of them. He held me and rocked me while I described the tormented feelings I'd been having, the fear that I wouldn't bond with the baby, the absolute terror that he would have birth defects requiring surgery. That we might still lose him yet. He listened to all of it.

Later when we were cleaning up the dinner mess he put his arms around me and swayed with me with his face in my hair. "How are we going to get through all of this?" I said we'd have to take it as it came. We stood that way for a long time. He said "we."

Saturday, August 22, 2009

Window Treatments

Since when did hanging a curtain, drape, shade or louvers in a window become a "treatment?" Had the treated window been ill? Was it well now? Would it relapse if said treatment were removed? And what if the treatment gets dusty? Will the window get allergies? These are tough questions. I don't have the answers. I'm going to be awake all night worrying about this. Crap!

I've always done double duty window treatments for our children's rooms. Louvers provide an extra layer of a noise barrier. One of the first things I noticed when we moved into our new home is that everyone here has a gardener. Everyone. And there appears to be a city ordinance that no two lawns on a single street may be mowed at the same time, or on the same day. My neighbor on the right is on Tuesdays. My neighbor on the left, Thursdays. My neighbors across the street are Monday, and the two story house across the street is Wednesday. Every Wednesday. The two story behind me is Thursday, but late in the afternoon. The two story to the right of them, and closest to our bedroom also has the gardener every week on Saturdays...first for the front, then for the back. And the two story two over to the right, well I don't know when theirs comes because their yappy little dog never shuts up! Never. I know all of this because I am a night nurse and therefore a day sleeper. It was wasn't long before I'd invested heavily in 38 decibel earplugs and white noise. We only see our gardener when ever he feels like showing up!

Double window coverings also provide a filter for bright sunlight for little people who need to nap during the day. And they are a blessing to those same little peoples' Moms who get very crabby when the little people don't nap! So, I took Our Littles to Lowes again to buy louvers. Say that three times fast! And The Littles and I walked along the low dresser under the window to be treated and measured and marked and drilled. This was really quite an accomplishment when you consider the fact that every step I took was accompanied by The Oldest maintaining a death grip on my hiney should I fall, and The Youngest looking like I might at any minute actually fall. Good grief! But we got them hung and The Youngest was really happy because he'd finally gotten to help with something in the Baby's room! Now all I have to do to finish treating the window is to find a suitably cute fabric the match the paint, carpet and furniture! Then the window will feel much better!

Thursday, August 20, 2009

Oh the Vomit

Last week, day 6 of the new school year, The Monster got suspended. That was last Tuesday. So, he was home all day Wednesday. The Young Miss had to be picked up Monday for nausea and then she missed the next day for nausea and the next day for a sore throat. The bus picked up The Monster on Thursday, but I found out that he also had a one day bus suspension for his behavior Tuesday, effective on Friday. Eeeek! He's off to a great start. At least this past week has gone well. He's brought home little green notes all week that say "Excellent!"

This morning after I waved goodbye to the kids' buses, I hopped into the shower to get ready for my PHC visit. Thirty minutes later I was vomiting into the sink so hard that I peed down my legs and had to get back into the shower. Not only was I pukey sick, and feeling miserable from that, but I was also so upset that I'd wet myself that I sat down on the floor and had a good cry. In my own pee. A pee puddle. Okay so it wasn't a puddle, but my cute new white belly shorts were ruined for the day, so I might as well take off the cute blue and white floral top that I felt pretty in. It's not bad enough that I was pukey!

Wednesday, August 19, 2009

24.5 Week Ultra Sound

I saw Dr S for our newest ultra sound. He says Jack is 1 pound and 9 ounces. Dr S started by reminding me that I can no longer abort, but that since he knew I was firm in my decision, we wouldn't discuss it. Then why did he bring it up? He said Jack does not have an echogenic bowel, so more than likely, his bowel is patent and does not have a blockage. The brain ventricles are not worsening in their dilation. Jack does have a mild mitral valve regurgitation, but not so much as to cause a murmur, and it may correct itself during the pregnancy. The great news is that there seems to be no ventricular-septal defect. Jack very clearly has a nasal bone as well, and there is no evidence of hyperhydramnios. Jack was once again very active for the ultra-sound, even bouncing the probe off my belly! Dr S said again that this may well be an indicator that Jack will be high functioning. All good news! The doc gave me several pictures, and even two of the nasal bone and two of his wiener!

Sunday, August 16, 2009

24 Weeks

Well time flies. I have not felt much like keeping track of my journal. I was amazed at how fast the 20th week came around because it seemed to me that I had just logged the 19th week on the calendar and suddenly there was another one down! I'm really struggling hard with the DS diagnosis. I keep reading these bloggers who say they wouldn't change a thing about their DS babies, but I sure as heck would. I want Jack to be healthy and normal. What parent doesn't? Maybe I've moved on to the anger stage.

This coming week I'll see Dr S again and have another look at Jack. I'm sure he's going to remind me that this is my last week to terminate. I don't even want to hear it. My goal now is to keep Jack in there as long as possible so he won't have more health problems. I love little Jack. I just wish the DS was a mistake. It's really put a cloud over the joy of pregnancy.

Since I journaled last I've been back to the endocrinologist. Again I arrived at 1:15 at my appointment time, only to find that I was once again the last patient of the day and I was called in at 4:45. He increased both of my insulins and gave me lee-way to increase another unit of Lispro if need be, which I have. I've also been to the PNC and will continue every two weeks until I deliver. My fundus is above my navel now, and the heartbeat sounded good. Last week I could actually see the baby kicking!

I'm at a stand still on the nursery until we get some extra money. I did buy a Winnie the Pooh crib set, but it's still in the package in case I find something I like better. I bought one water proof mattress pad, and found a suitable color towel to cover the changing pad with. I'll buy more as time goes by. Those changing pad covers get dirty fast. I don't think I will sew them this time though. I think I'll just use safety pins. The elastic was hard to get just right last time, and the folded up product was ungainly and lumpy and took up way too much space. Flat towels will fit much better and will be easier all the way around. I'm seriously considering using pillow cases for the cradle sheets. I'll still have to sew the bumper pads for the cradle, but that should be a small easy project. I even have some spotted fabric and matching ruffled trim that will work nicely with our bedroom decor, is quite baby-ish enough, and isn't overwhelmed by pink. I might even be able to squeeze out enough to make cradle sheets. If not, I'm sure I can find some minty green pillow cases that will match well.

I've been slowly decluttering the front room. That's a huge project. I can't really leave it though, because Jack will come and then we'll need to put up a Christmas tree in that room just two weeks later. I think The Dear Daddy is going to have to do the majority of the the tree buying and set up this year. It would be a good outing for him and the kids. Depending on what date my scheduled C-section is, we might well be celebrating Thanksgiving a week early! If Jack is born the day after Thanksgiving, I can look forward to yummy left overs when we come home from the hopspittle!

The kids have been in school for a week now. The Girlie was accidentally put into a 6th grade class until I discovered the error on Wednesday morning. That was also the first day they'd gotten the bus to school, so she was stressed already about getting on the wrong bus to come home. Poor kid. Then I wound up going to the school at 3:30 to pick them up because the danged bus broke down! I like her new teacher though, and she did not like the other teacher, so it's win-win. And the bus picks them up and drops them off right here at the house! That's going to be extremely convenient. They will be off school for three weeks at Christmas, but only one week and the weekend at Thanksgiving. November is going to be crazy busy. I'll have to get both Thanksgiving and Christmas dinner bought, and all their gifts and Jack's bought and wrapped before I leave for the hopspittle.

The Dear Daddy and I talked a little about names. He doesn't like Jack or Liam or Wyatt. He doesn't have any suggestions of his own yet, but at least he's been behaving like he always has before all of this started. I'm glad he's back. I've missed him. I think that until he processd all of this, he had come to see me as the enemy, but really, I was still his partner all along. I'm glad he's back and ready to resume being My Beloved.

Signs

I started doing some simple sign language with The Girlie when she was little...and then it fell by the wayside. I tried to start again when The Boy-O was little, again it fell by the wayside. I've been reading like a fiend anything I can find about how to help The Newest, and signing figures prominently in every article about communication and Ds. I do not believe that children speak less or slower when they are started with signing early. I think it helps them communicate and when they discover that there are spoken words to communicate the same need, their speech often explodes!

So, The Littles and I have spent the day practicing simple signs. The Girlie is picking them up very quickly. Boy-O is only tolerating my instruction because I have insisted! And I do believe The Girlie has a greater memory capacity than I do...I still have to look at a cheat sheet but she calls out the name of the sign before I've finished doing it!

I plan to keep this up this time. The Newest is being born to a grand matron for crying out loud - I have to ingrain those few remaining memory cells before they die off completely, and better that The Baby is the only one learning at that point rather than everyone around him who is supposed to know what he needs! Yes, I'd better get started now...

While I run The Kidlets through five minutes of signing several times each day, I sometimes feel myself step back and ask myself how we got to this place. What are we doing here? My heart is heavy. But hopeful. And it's something I can do for The Newest, rather than just sit back and cry. I would not in a million years have desired to have a genetically 'enhanced' baby. But since The Newest will have extra chromosomes, I am going to do whatever is in my power to make sure he's the best extra-chromosomed person he can be. If spending a little time each day learning signs helps stave off the insanity I feel like I'm precariously dancing around, so much the better. It's at night when I'm laying in bed that I get really fearful.

Monday, August 10, 2009

Does She or Doesn't She?

No it's not an old Clairol commercial. I know I've never said to a stranger that Jack has Ds when they have commented on my pregnancy. There was another lady, right behind us in the check out at Costco today. It's still so briefly that I've known about Jack having Ds, I can't believe I was even considering my next move. Her daughter looked to be a teenager, and I kept wondering, does she? And then she smiled at me! And she does! I smiled back and when her mother came closer to me I asked her discreetly if her daughter had Ds. She said yes and I patted my baby bump and said that we were having a baby in November with Ds. A boy. She brightened and said, "It's never dull - it's always an adventure and you're going to be amazed!" She was old enough to be my mother, and the smile she gave me was nothing short of stunningly beautiful. She was happy. Her daughter was happy. And they made me happy!

Sunday, August 2, 2009

22 Weeks and Baby Clothes

Here I am at 22 weeks. The Girlie and I sorted through the baby clothes again and started the fun task of washing, folding and putting them away. It was a fun task, but also a heart tugger. I could easily remember The Girlie when she was tiny wearing some of these things. Since her gender was a surprise, there were plenty of unisex baby items when she arrived. And of course, these same little pieces of baby magic were worn by The-Youngest, Soon-To-Be-Middle and I could easily remember his soft little squishy plump baby body nestled in them as well. Again I wonder will Jack be dark haired and olive eyed like My Girlie or blonde and blue like My Fireball? A combination of the two? Or will his Down syndrome make him look completely different than any of us. From any of us. Only time will tell.

I love him dearly already, but at the same time I am terrified of meeting him. Will I know him? Will he look so foreign to me that I won't be able to bond with him? Will he feel in his first moments of life completely abandoned by the one sacred love every newborn should be guaranteed? Or worse, will he be born with problems that send him to the NICU for weeks or even months of being too fragile for me to stroke his skin and hold him so he can feel my love? Between my fear of him and my fear for him, I am a wreck. I have no delusions that we will all have a challenging time when he arrives. I can easily envision endless doctors appointments, therapy appointments, days on end of constant stimulation of every kind. I feel up to those tasks, the things I have researched, the things I have learned will be crucial for him, the things other parents have described as the most beneficial for babies with Down syndrome. It's the unknown that is tearing me up. Will he need heart surgery within months of birth? Will he need bowel surgery within hours of birth? Will he require life support during his first hours or days...or months. And that awful nagging fear, the worst fear of all...will I know him? I think we will all be fine, but as any mother trying to envision the baby growing within, it is a huge unknown.

Grandma Emmie visited today! The Littles had barely let her get inside the door before dragging her down the hall to the nursery! She was suitably amazed! "Where did you find all this baby furniture? I thought you weren't going to buy anything!" She knew that Bits had loaned us the crib but she hadn't expected it to look so new! And then I pointed out how we'd put other pieces together from my tea room from our first home. She was the voice of enthusiasm as we recalled where those pieces had been located and how perfectly they all went together now for a new purpose. "It really looks like it all goes together! I thought maybe you'd hit a really good bargain sale or something!" My good friend is always a balm to my soul. She never visits without leaving me feeling refreshed, revitalized and renewed. She makes me feel capable. And right now, that simple thing, capable, is vital to my well being.