...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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Friday, July 31, 2009

A 'Gift' from Auntie Bits

The Dear Daddy has another out of town job with a film crew, so The Littles and I went to visit Auntie Bits tonight to play with her big bunch of kidlets and to pick up the final item for the nursery! She is loaning me her crib! It's a light oak finish and it's fifteen years old, and therefore has also aged to a beautiful light golden patina, like all of the other furniture in our new nursery!

Auntie Bits loaded it into the van for us, and once home, The Girlie made trip after happy trip out to the van to bring in all the parts and pieces! And then she started pestering me to put it together! So we did! The Dear Son, Dear Daughter and I were all armed with wet cloths and spray cleaner and wiped it all down and figured out where all the peices went. We even got it finished and in place by midnight! The Dear Daddy will have to take a few peices apart, because I can see now that they are in the wrong places, but for all our hard work, the nursery furniture is pretty much complete!

Thursday, July 30, 2009

Oh the Endo & New Uses for Old Treasures

Yesterday I had my first appointment with the endocrinologist. I liked him. He was real and practical, not dogmatic. He reviewed my previous pregnancies with The Littles and went over the boat load of lab work I've had so far. He agreed with me that there's no reason to put me through the gut wrenching torment of a 3 hour GTT. Lets get right to it. I was his last appointment of the day because I'd been added on last minute. That meant I was there forever. When I finally got to leave, I drove straight over to the pharmacy to drop off a bunch of scripts. When I went back to pick them up today, the bag they shoved through the window was ridiculously huge - NPH, Lispro, syringes, alcohol wipes, lancets, strips and a glucose meter.

I'd been sitting at the computer trying in vain to find a crib to match the furniture in the baby's room. The finish I wanted was everywhere when we'd been hunting for our first ever crib and I'd had a really hard time finding white. That's why we'd ended up with the inexpensive Jenny Lind crib - it came in white! Now however I could find dark oak, mahogany, cherry, combinations of cherry and oak, slate blue and oak, and white. And a scary number of makers who are finishing cribs in black. Yes black. In a baby's room. Yuck! I finally did find a beautiful wooden crib in light oak - for $899.00! Dang, for $899.00 bucks that crib had better be able to breastfeed, burp and change the baby! And eventually help it with it's homework! So I spun around in frustration and my eyes landed once again on my old tea cart from a previous lifestyle before the Dear Darlings arrived. It looked to me, from this angle at least, to be the perfect height for a changing table. And it was standing in the as yet disaster that was our front room in a jumble of misplaced and shoved together furniture right next to the media tower, also a remnant from said previous life style. Standing there together like that, these two pieces looked exactly like the white combination changing table and diaper tower that we'd first purchased for The Oldest and recycled for The Youngest and was now ensconced in The Youngest's room as dresser. So I sent The Girlie to go fetch a dolly for me. And I took said dolly and pretended to change a diaper on the tea cart! And it was perfect!

When Miss Susie arrived, we - okay she - rearranged the furniture in the nursery once again, and then she hauled in my 'finds' and suddenly the nursery had a changing table and matching diaper tower! And since everything thus far had come from my tea room, it all matched and went perfectly together! And it was free! And it put an end to my requests for Miss Susie to "Let's just try this piece over here and move that piece over there!" Poor Miss Susie!

The Soon-To-Be-Middle is still kissing my tummy and saying "I love you baby." Yesterday he said, "Mom, you better call Heaven because an angel's gone missing!" Then he kissed me. He's been such a little fart lately, and then he does something sweet like that! The Girlie is still saying how surprised she is that I'm pregnant. She's taken to calling Jack her "little brother's new little brother." And I'm liking the name Jack more and more every day! Jack is having hiccups many, many times during the day, every day. It took me a while to figure it out. He's lying low and transverse, so the sensation is different than with either of The Littles. Stay healthy Jack!

Sunday, July 26, 2009

21 Weeks

Wow! 21 weeks today. That simply amazes me. The baby is moving at regular times during the day, and almost always low in my abdomen. I think he must be transverse. I'm up and down for how I'm feeling. Some days I feel great, and some days I just feel lousy and tired and crabby. I have been struggling with the DS diagnosis. Some days I am hopeful and some days I cry all day. I suppose I'm getting better. The nausea still comes and goes. Everything from my hips down creases if there's anything touching it and is 3 sizes bigger than everything from the waste up. I think I'm getting a glimpse of what old age will be like. Everything hurts. My pelvis. My tailbone. My hips. My skin.

I know this will be my last pregnancy ever, and I am trying to enjoy it, but I feel so physically lousy and so emotionally blue. I haven't been able to wear shoes for a while now. I finally forced my feet into sandals and went out to buy some house slippers. I wear a size 8 1/2 shoe. The only slippers that would accommodate my Fred Flintstone feet were size 11-12, and when I took them off even those giant loose boats had left grooves in the tops of my feet! And I'd even gone first thing in the morning before my feet could reach their mid-morning size. I was even too sad and blue to work on the nursery for the last few days. Sleep has become my escape.

Friday, July 24, 2009

Nursery Progress

I didn't call The Buttface all day. I'm still burnt up about the malicious joke and, to a lesser degree, the crabbiness on the phone.

Today I installed the floor boards in the main area of the nursery. Then Susie and I moved in the furniture! The Beloved Buttface has always had a grand time picking on me for having a penchant for too much furniture. But it has come in very handy! At our old home I had a tea room with matching pine shelves and dressers and a buffet, along with a tea cart (it was really a fancy decorative microwave cart) and a media stand. And it has aged over the years to a lovely golden patina. Perfect for sage green walls and toffee colored carpet! Yippee-skippee! So Miss Susie and I - okay Miss Susie - moved the dresser and two tall bookcases into the nursery, and my Mother's rocking chair that I'd used for both of The Littles. I pretty much stood there in the way saying helpful things like, "Watch your fingers! Don't smash your toes! Watch the paint! Okay, you're going to have to stand that on end to get it through there!" I'm sure Miss Susie found my help invaluable invalid.

Once Miss Susie had everything where I suggested, she moved it a few more times to other places that I suggested. And then a few more times again. Miss Susie deserves a raise! Once I stopped tormenting Miss Susie - I mean once I was finally happy with the placement of the bookshelves, the Lovely Daughter started filling the shelves with her old favorite books and three volumes of nursery rhymes. Apparently that pinkie-swear was magic because she said she was going to sit in the rocker to read to baby Jack. So it's only a long dresser and two bookshelves, but it's looking like a baby's room! I cannot wait to get the crib. I kept the crib we'd used for both of The Littles, but it was white. In the grand scheme of things it will be cheaper by far to buy a new Jenny Lind crib for $100.00 to match, than to buy all new furniture to match the crib.

I didn't call Buttface and he didn't call me, so when 5:00 rolled around and he hadn't shown up, I started thinking that maybe he wasn't coming home tonight; it's always good news when these jobs last longer because it usually means premium pay. Then 5:30 came and went. At 6:00 we walked down to the mailboxes and came back. Dinner was in the oven and there wasn't much else to do. By 6:30 I was sure he wasn't coming back tonight. Then at 6:45, I heard the key in the lock. I was about to serve dinner to the kids, and in he strolls. He asked what we'd done today and I said not much. He asked if I'd tried to call and I said no, to which he asked why I hadn't. I said between him being crabby on the phone when I did call him and the cruel joke he played on me Wednesday, I didn't feel like talking to him, and I continued serving dinner, setting a plate for him.

I went to take a bath instead of eating. I'm not supposed to sit in water, and I'm only supposed to be showering, but tonight I indulged in a bubble bath. That danged stitch has been infected since it was placed, so really, what harm can be done with one bubble bath? I think the kids must have taken him to the nursery to see our progress because that's where I found the three of them. He jumped right in and went to work on the door, and I showed him the moulding. He thinks we should get an awning for outside of the nursery window so it won't be so hot in summer. Then I served dinner for the two of us, noting that his plate was still spotless. It was a rather pleasant meal. Hmmm. What's up here? So after dinner he went right back to work on the nursery, cutting the moulding for the remaining floor boards and the door frame, and he cut the door to fit. We installed the door together. I'd already said thank you, but when he asked if I was happy with the work he'd gotten done I said yes, very, and thanked him again. I'll be really glad when he finally gets back to normal and stops with the Dr Jekyll/Mr Hyde thing.

Once he'd stopped working for the evening he was pleasant and funny with me and the kids. He had the kids in fits of laughter and he was affectionate and joking with me. Just like normal. Once the kids were in bed he sat behind me on the couch to massage my neck, head and back. He made an attempt to massage my feet and legs but they are so swollen and puffy that it hurts too much to touch them. Once we finally went to bed, he was even cuddly and talkative. Then he dropped like a rock and was snoring.

Thursday, July 23, 2009

PHC, Carpet, Floor Boards & The Girlie

Today I was off to the PHC bright and early. I was unhappy that I had to leave Miss Susie to supervise the carpet installation, but there was nothing else to be done. And today I saw yet another practitioner, Dee - my fourth! But I liked her. Since I hadn't seen her before, she asked if I'd planned to have an amnio. I said the results were on the chart and that The Baby had trisomy 21. And then the inevitable, "Oh, I'm sooo sorry." And then the equally inevitable, "Down syndrome kids are sooo sweet and loving." But I still liked her. She had nothing to do with the amnio results and I felt like I might have blind-sided her just a little bit. I said that I didn't really think they were automatically sweet and loving, that I thought they just lacked the capacity for hatred and contempt that comes so easily to most people. She agreed. Then she increased my Methyldopa to 750 mg four times daily and ordered a boat load of labs. And another 24 hour pee test. Crap!

Another change today is that I have an appointment with the endocrinologist for next Tuesday, and Dee is moving my appointments up to every two weeks. "You are a kettle we need to keep from boiling over!" So with appointments cards and prescriptions and lab orders in hand, I rushed home to see the carpet!

I was happy with it and now the room looks so much better! The Dear Daddy has already cut the floor boards so I can start on those when it's cool this evening. In the Meantime, Grandma Emmie stopped over for a nice visit with me and The Littles. Grandma Emmie rocks and she always brings a bag full of books and goodies for the kidlets!

Then Miss Susie and I packed the brats into the van to go to Lowe's. Trust me when I say they were being brats! It all went downhill from there. The Dear Daddy took a job out of town but I needed to ask him something about the door moulding. He was crabby. Unless he changes his ways, he will be known from here on out as The Buttface. Or maybe just plain Buttface! Then we shopped and in general tried to keep The Brats from killing each other right there in the store with items pilfered from the hand tool section. And then we came home to work on the nursery. First I discovered that the floor board paint was streaky and needed to be redone. Again. The I found a whole long piece that I had entirely forgotten to even paint. Then I decided to put the floor boards in the closet, since it didn't really matter what those looked like. Anyone getting that close to those floor boards deserves to see streaks! But...the danged nails bent when I tried to nail them up! Consequently it took a lot longer to do that small little task. So then I decided to rehang the door. And now that the carpet and padding are in, the door with the previously 2" gap no longer fits! I could have forced it in, but it would have brushed the carpet with every swipe and ruined it.

And again with The Girlie. She's still worried that I will abort Jack-Jack. She was supposed to be sleeping but she called out to me when I walked past her bedroom. She was crying. I sat down on her bed and asked her why she had tears. She said she was afraid that I'd kill the baby with an abortion. I don't know what to tell the girl to convince her! While I wished fat thighs on who ever told my darling daughter that word, I gathered her into my lap. Or what was left of it. First I tried reason. I explained that Mommy wasn't working just so I could keep The Baby safe, that I went to the doctor's and never missed a single visit so I could keep The Baby safe, that now I would be going to the doctors every two weeks and then some so I could keep The Baby safe, that the handfuls of medicine she saw me take a million times a day was so that I could keep The Baby safe. And that I had that special test so that I would know how to take care of The Baby to keep him safe. She wouldn't be comforted. So I tried guilt. "Honey," I made her look at me, "Do you really think Mommy would lie to you?" Apparently so because she thought about it for a good ten seconds and then made me pinkie-swear. Finally she climbed out of my lap and fell asleep while I laid beside her stroking her hair. Poor Sweet Girlie. As I ease myself out of her bed I send a silent plea to God for her. If we lose this baby now she will be devastated. Please God, comfort her heart.

Wednesday, July 22, 2009

Dr Tzeng

The phone call with Dr Tzeng was very enlightening. His child was born 36 years ago to himself and his young wife. There were no indications they would have a DS child and no family history. I'm finding more and more women in their 20's, like Dr Tzeng and his wife, who are having babies with DS. To make a long story short, he and his wife pushed for early nutritional intervention, stimulation and education. He fought hard to keep his son in the mainstream classroom. His IQ is about 85. He graduated from high school when he was 21 and went to two years of community college. When he got out of college he went to work for the Daily News. He works on computers. Not at computers. On them. He makes them work. He lives in an apartment of his own, not community or assisted living. He takes the bus to and from work and goes on outings with his friends. He does his own laundry, pays his own bills, and prepares simple meals. I thanked Dr Tzeng profusely. He said to remember early nutrition, stimulation and education, and to fight until I win for my child's right to be in a typical classroom with contact with as many typical children as possible. He avoided using the words "normal" or "special." He also said to keep his phone number, that I could call him whenever I wanted during my pregnancy and afterward. It gives me hope!

20 Week Ultra Sound

I called The Beloved Buttface at work today, as we'd gotten back into our 'happy place' and it was once again more common than not for me to call him by mid-morning. We'd chat for a few minutes, review our days ahead and then hang up with "I love yous." Well today he decided to pull a cruel and malicious joke on me. He thought it was a funny way to illustrate a point of contention that we'd had now for years, and didn't see any thing at all contemptible or callous about doing this while I'm pregnant and already so easily upset. I haven't really been frank with him about how terrified I am, on a daily basis, how stressed and anxious I've been about The Baby since before we even knew about the diagnosis, mainly because his coping abilities have been pretty thin as well and I didn't want to add to it. Besides, I really didn't want to have to watch as his head exploded. I was floored by this very odd bit of utter stupidity and I just couldn't believe he'd pull this crap when he has to know, at least on some level, that I'm already being tormented enough with my own grief and sorrow. It's been just two weeks for me too. I hung up the phone and had a good sob. Then I put it out of my mind. I had better things to think about.

Today My Girlie accompanied me to my ultra sound with the beloved Dr S. The tech said he'd given her permission to answer all of my questions! She explained every thing she was seeing and measuring and confirming the body parts and telling me what they really were when I guessed wrong a million times. She really is much more at ease now that we all know Jack's little secret. The the beloved Dr S came in looking all doom and gloom. I asked right away, "Do you have more bad news for me?" He smiled and said, "No my dear. The amnio result was the only troubling news I had for you." And it was all pretty good news from there.

Dr S is just far too tired. I've asked before and I asked again today, was I his last appointment for the day? "No, I am sorry to say, you are not. But that will change. No, after you leave, I have two more and then I have to go to the hospital to dictate and see patients and then I will be lucky if I get home by eleven o'clock tonight." Then he said that from now on, he wanted me to be his last patient of the day so he could spend extra time on my ultra sounds, and that I should tell the appointment girl that he wants me in the 4-D room, always.

And then he started repeating my scan. He said that the brain ventricles remain slightly enlarged, not alarmingly so, and the same for both kidneys. He said that this is a common finding with Ds pregnancies due to the concomitant finding of hyperhydramnios; however, I had no evidence of too much amniotic fluid - mine was just right. Then he started really looking at the heart, and there was more good news. He said that the 'abnormal focus' in the heart, another common finding in Ds pregnancies, was now "so small it is insignificant." Then he said to hop up and go into the 4-D room, with the big LCD screen over the table, that he'd be right there.

Once there, he reminded me that I still had about four weeks to change my mind. I reminded him that I'd already made my firm decision. He took both of my hands into his and said, "Tracy. Promise me, promise me, that you will think about this. I am not speaking with you as a patient, I am speaking with you as my friend. You are very, very dear to me, and I know that if you are not absolutely sure, absolutely positive, with no doubts in your mind, that if this baby is born with major health problems, if you then second guess this decision, it is going to tear you apart. You will not be able to live with yourself unless you are completely sure right now that this is the proper thing to do." I looked him straight in his kind, concerned face and promised him that I'd already thought long and hard and I knew for certain that this was the only proper thing to do. "Okay my dear," thumping my knee like a grandfather might do, "I believe you. Only promise me that you will never look back, and I promise you that I will do what ever I can to see that you make it as close to your due date as possible." And then the fun began!

After printing several pictures of the baby, he switched to 4-D and let the Girlie and I watch little mini clips of The Baby in motion! It was so incredible! We got to watch him moving his arms and legs and touch his face and turning his head! It was the most amazing experience! Dr S said Jack's vigorous and strong activity may well indicate that he could be very high functioning! And then he printed three 4-D pictures that are so clear I can see Jack's little ears! I fell in love with My Baby all over again! The Girlie had been surprisingly quiet during the mini-clips, and as soon as Dr S left so I could dress, I found out why.

I still don't know where or when she heard the word abortion, and she does not have the memory capacity to tell me. I am beginning to regret that I was so honest about why some people choose to abort. But she knew that Dr S had been talking about termination. All I could do was hold her tightly while I stood there half dressed and assure her again that I would do everything in my power to make sure her Baby Brother would be born safely. She cried. She was still scared. She stopped sniffling when I reminded her of Dr S's pledge to do everything he could to keep Jack safe until he was ready to be born. My Girlie. She is such a sensitive soul.

Once the Dear Daughter was calmed, I dressed and we collected our awesome new pictures and were just about to walk out of the office into the hallway. Then Dr S came rushing out, holding a finger up to detain me while he held a cell phone to his ear. When he hung up he said, "Oh, my dear. I am so glad you did not get away!" He handed me a piece of paper with a name and phone number written on it. "This man is like an uncle to me. He was my mentor through medical school. He has a child with Down syndrome and I called him to see if he would speak with you. He is a good man. He said he would wait in his office for your call, but he needs to leave in about 30 minutes. Go right home and call him. Please." I thanked him profusely and ran right downstairs to call him from the van. Okay, so we took the elevator down, but you get the picture!

Tuesday, July 21, 2009

Carpet Purchase

My danged check finally came so I went out to find carpet. I strongly dislike the fake almost orange colored flooring in the nursery and I don't want Jack crawling around on something that cold. And it's chipped in places, so it has to be covered. I found a really cheap remnant at the local flooring company and it is big enough to also carpet the area outside the nursery that leads to the garage. The area that has here-to-fore been chip particle board and not friendly to the feet or conducive to being cleaned. So I feel a little better. Just a little. The carpet will be installed on Thursday!

Monday, July 20, 2009

I Am Overwhelmed

I've had a crappy day. I have finished all the painting in the nursery. I'm still not at all happy with the coverage, but after two gallons of paint, where one should have been more than adequate, I can see no value in kicking my butt to apply a third gallon. The walls are horrible and that's all there is to it.

So I wait until 2 pm for the mail to come so I can go buy carpet for the nursery. And the mail came. My check didn't. Damn. That put me in a really bad mood.

So I came home and hit the Internet again. It's been less than two weeks since we've known that Baby Dear will have Ds, but I think in that two weeks I have exhausted all available online reading material. And the picture is so very grim. So I have switched to reading blogs about real families and their babies with Ds. Much, much better reading.

I think the whole reality of the Dear Baby having Ds is crashing in on me. I cry a lot. I pray a lot. And that brings more tears. A lot more tears. And I can't go buy carpeting because my danged check didn't come.

Sunday, July 19, 2009

Feelings, Oh-whoa-whoa Feelings

I am 20 weeks pregnant today. We have made it to the halfway point! And this morning when I turned over in bed I was sure that I'd felt Jack-Jack move! On the outside of my body! With my hand! This evening I was laying on the couch and I felt it again. My Girlie was still awake so I called her over to see if she could feel it...and she did! She got to feel him kick five times before he moved away! What a magical look on My Girlie's face!

Thursday, July 16, 2009

My Beloved is BACK!

Tonight was indeed a very good night. The Dear Daddy was back in his groove, funny, loving, affectionate, teasing and his usual wonderful self. Even more so for the absence. The Littles were noticeably at ease and both of them took advantage of the situation and hit The Dear Daddy up for five bucks each! Brats, I tell ya! Opportunistic brats!

Wednesday, July 15, 2009

A Day for Revelations

Today I called Mom in Idaho first thing. She's probably had at least a day to digest the news. She was understandably unhappy that I hadn't told them about the pregnancy when they were here in May. She felt slighted. I told her how sorry I was for having to keep it from her. I explained that I'd wanted to tell her and almost had so many times, that I'd almost invited her into the bathroom with me that day to do just that. There were so many times that I'd wanted to just pick up the phone and call her but at that point the pregnancy was still so very tentative, that I'd still been bleeding heavily at that point, and the more time went by with more complications, the more unsure it seemed. By the time we'd had the amnio, it just made sense to wait until I knew the baby's sex. Then we got the news about the trisomy 21, so that took more time to digest and figure out what to say. She said the thing that had really upset her was that I'd addressed the card to Mr & Mrs R. Were they chopped liver now? No, they were not chopped liver. Hadn't she ever noticed that Christmas cards were always formally addressed to Mr & Mrs R? I also explained that I'd addressed about 90 envelopes in one sitting, and that there was no slur intended. We made small talk and talked about family and ended the conversation on a very good note.

And then a surprise. I'd given up my daily midday calls to The Beloved and I was trying to give him space to work things out. And today, wouldn't you know, he called me at about 10 am this morning. He said he was calling to see if the gardener had arrived yet. I told him that I'd run into him on the way home from the pharmacy, and he said he had one lawn to do and then he'd come to our house. I'd barely told him all of that when he asked, "Was there something you wanted to say to me this morning?" I said no. He asked if I was okay, and I said I was fine. He asked what was going on and I said "Nothing." So he said, "What's the matter? Talk to me." So I told him he could have at least said good bye to me this morning. That opened the hole to the gaping abyss and we both fell in. Throughout our long history together whenever we've had difficulties with each other we have habitually jumped head first into the dark, slimy, deep end of the pool where the monsters hide. We've always started off in the worst possible place and have had to struggle to find each other again and then work our way together to the clear, clean, safer water. This was no different.

He was ready to talk. He'd decided to take the wall down. I knew it when he said "Talk to me." And ironically, the hardest and most soul cleansing discussions we've had together have been over the phone. I don't know why that is, just that it is. He said he wasn't okay with my decision, and he still insists that I said I'd abort if there was something wrong with the baby. He said he still loved me very much, that I'd never know how much. He said that he couldn't condone the decision I'd made to keep the baby. He was worried that if something happened to him he couldn't be sure that we'd all be alright, even more so now with a baby with Down syndrome. He said that if something happened to me, he didn't know how he'd be able to cope with a child 24/7 that he didn't know how to deal with. He was very afraid that The Littles would get picked on because of the new child's mental retardation. He said that he was trying to respect the decision I'd made but that he was really struggling. He said he'd felt the pressing need to start making some decisions for himself and that he wasn't sure of our future together. He said that it would kill him for us to end, but he just wasn't sure. He'd finally opened up to let me see what he was feeling, how he was hurting, what was in the 'worst possible place.' He spoke at length and by the ending of this discussion he said that maybe he was seeing things from the worst case scenario, that maybe the baby's prognosis would be less severe than he was seeing. He said "we" will know more when we see the doctor next on July 22nd. He also said that he'd hesitated to speak to me about all of this because he didn't want to upset or hurt me. He sounded sincere in that. He always does, because he always is. Never in my life with him has he told me something just because I wanted to hear it. He may not always say what he's thinking about, but if it makes it past his lips, he means it. He even ventured to say that once the baby was born maybe it wouldn't be as bad as he was picturing, that we'd just have to see.

I pretty much let him speak and tried not to interrupt much. I didn't know how soon I'd get another chance to hear what he thought. When I did speak it was to agree with some of the fears he'd expressed. When it seemed he'd spoken his piece, I said that I hadn't wanted this to happen either, that I was still struggling with the fact that we were even pregnant again, terrified daily that we'd lose another baby, even before the amnio results. And having felt the baby move inside me and having heard it and seen it, I couldn't kill it. He said he understood that completely and that he wouldn't ask me to abort, but that he just felt so helpless about the Down syndrome, that it was all out of his hands, beyond his control. I told him that I could understand that because I felt helpless too, and that aborting would be so foreign to me that I also felt powerless, that from the moment that I knew we were pregnant, that it was out of my hands, that I also had no control. I said that from the moment I first knew, that it was a baby to me, his baby, every bit as much as both of The Littles, and that I too had absolutely no choice. I think he finally understood.

When we hung up he said he loved me without mumbling.

And then I got another surprise that nearly took me off my feet! My youngest older brother's father (what???) had written me a letter. I'd long suspected that he was actually my father, and I do still carry his name, but after 44 years of knowing about me and never acknowledging me, why did he reach out now? The only two people we have ever had in common have been laid to rest next to each other for long years now. He wrote that he'd wanted to reach me for some time now, and had found my address on the pregnancy announcement that I'd sent to my youngest older brothers other sister. (Got that? Good!) I know it's confusing. Try reading it slowly, out loud! He requested I not tell his other daughter that he'd written to me, could we please keep it our little secret. He wanted to congratulate us on The Baby. He also said he'd wanted to thank me for loving my brother so well throughout his difficult life. Was this guilt talking? I don't know. It was weird. Just plain weird!

And then my dear friend Bits called. She'd had an experience in children's court that day and was anxious to tell me about it. There was a gal in the Children's Center at the courthouse, employed by the courts, to keep children happy, safe and supervised while their parents are in court. And she has Down syndrome. And while she wasn't the person in charge, the boss, she was gainfully employed by a government agency and happy with her work!

Tuesday, July 14, 2009

A Day for Tears

I have been extremely blue and prone to tears for much of the day. I got a good nap in while Susie was here, but I am still exhausted. And that damnable pepto-pink is giving me fits! Today I picked up a forth gallon of primer. And I haven't been using the cheap stuff either. I've been using the expensive stuff guaranteed to cover anything. The stuff I'd used four years ago when we first moved in to cover the Thomas The Train blue in The Youngest's bedroom! Who paints their kid's room that awful bright blue? I guess people who paint their kid's room pepto-pink!

I went to the beloved Dr S's office to pick up the amnio report. When the office gal went to verify that Dr S said I could have it, he came out himself to greet me. "Tracy," he said, taking my hands, "How are you doing, my dear?" I assured him that I was doing well and that I'd already begun researching the best and most recent therapies for babies with Down syndrome. "Okay sweetheart. That is good. We will see you in just a few weeks. If you have any problems, anything at all, you call me." So I left his office and sat in the van reading the amnio report. I had a copy in my hand of Jack's karyotype. His genes. And there it was. Three copies of chromosome 21. And a laundry list, in print, of things that can be wrong with My Baby. I sat in the van and had a good long cry before I pulled myself together and drove away.

The Incredible Miss S called me this afternoon to say what a beautiful job I'd done on the pregnancy announcements. It gave my spirits an incredible lift. Not only to speak of The Baby in a positive and cheerful fashion, but just to hear her and catch up on all the things we seldom get to speak of in our passing greetings to each other on-line.

The call from The Incredible Miss S also made me realise that others had gotten their announcements too. Including Mom and Dad in Idaho. Whom I had here-to-fore been too cowardly to tell myself. Shameful. But there it is. But really, I'd wanted to tell them we were having another Baby at the same time we told them the gender. And by the time we knew it was a boy, so much had gotten so much more complicated. Yes, I had taken the cowardly way out, but I think it was purely out of self preservation.

In the evening, The Dear Daddy arrived home in a huge green truck with 15 yards of soil amendment for the backyard. The Girls, no the Other Girls, Sophie and Princess, had destroyed the sprinklers the previous summer and we'd both been too busy with life to get them repaired in a timely manner. Consequently, the grass had died and it was a barren wasteland. And the grass had never been that great anyway, so we were starting over from scratch. Hence the need for 15 yards of soil amendment. The Littles ran out to the front lawn the watch The Dear Daddy operate the gears to lift the back of the truck and dump the pile into the driveway. When he joined us on the lawn he kissed The Littles and ruffed their hair. Once inside the house we made some small talk but he had a hard time meeting my eyes. Instead, he went off to take a nap.

I used the time to finish the primer in the nursery closet and to paint the door. I tried to be alone with my thoughts, but this was the favorite new place for The Littles to hang out and they were keeping up a steady stream of questions and bickering with each other. Kids do that. Especially The Littles.

Dinner that night was a casual affair of pizza and television. The Dear Daddy was busy engaging The Littles about how they'd spent their day, so I wandered back into the nursery to check the coverage of the primer. And then I decided to take a few minutes to seal the window on the inside. Imagine my surprise when I turned to see The Beloved standing there. He asked why I wasn't using a caulking gun and I explained that I wasn't good with one, that it was easier for me to do it by hand. He started listing the supplies he'd need to seal the window from the outside and that he'd do the shopping for that so I wouldn't have to. Then the moment passed and he returned to the living room and I went to take a shower. It was a start, at least.
We went to bed after midnight having said very little to each other that wasn't small talk. I was reminded of the time two months after my stroke when I'd suddenly regained my full range of speech and vocabulary. He'd hugged me and said how much he'd missed sitting around in the evening just talking with me. Now I was missing it.

Sunday, July 12, 2009

19 Weeks!

At 19 weeks the baby is 6" long, crown to rump, and weighs about 8.5 ounces. Sensory development is exploding. His brain is designating specialized areas for smell, touch, hearing, taste and vision. He may be able to hear my voice. His arms and legs are proportional to his body now and hair is sprouting from his scalp.

I've been tracking the baby's weekly development from an on-line site and recording it in his journal, even going back to the weeks before I knew he was with me.

Today The Oldest and I have started primering the nursery. (Yes, primering is a real word because I just made it up. I can make up words at will, ya know. It's my blog!) I took breaks every half hour, since I'm supposed to be on bed rest and taking it easy. On a side note, I have never comprehended how women with small children in the home are supposed to be on bed rest? Does a magic genie jump out at that moment in a poof of baby powder scented mist? I've had no cramping or pain or any other odd sensation, and little Jack has been very active. We were forced to stop and take a longer break when I sent Susie back to Wal-Mart for a third gallon of primer. That danged pepto-pink just wouldn't die!

I went to the PHC today. Usual stuff. BP elevated as usual. My Methyldopa was increased yet again to 750 mg three times a day.

And much as I would like to deny it, I have already referred to the baby as Jack-Jack. I am a Goober too!

Saturday, July 11, 2009

Primer, Spackle, Paint and Goobers

Today we bought Spackle for the holes in the soon-to-be nursery walls and two gallons of primer. It's a small room, really, and two gallons of primer might be a bit much, but that pepto-pink really is quite the eye sore. We bought tarps and brushes and rollers and trays and masking tape and stirrers and sand paper. I also bought two gallons of a lovely calming light sage green paint. It will go beautifully with the Winnie The Pooh theme I am planning for the nursery. I have often heard that babies with developmental delays require bright surroundings and heaps of stimulation of all kinds. But...since The Newest is going to have The Youngest, Soon-To-Be-Middle for a sibling and therefor a constant barrage of stimulation, I have decided that a nice calming sanctuary is going to be required for his nursery. Then we hauled all of our treasures home and took naps! Well, I took a nap. Susie took care of The Littles.

Later in the day I took apart the daybed while Susie struggled the eight file cabinets of scrap booking supplies out to the garage. Then she hauled the daybed out in pieces. And the broken TV. And the entertainment center. And about 50 boxes of books and dishes and linens we no longer have beds to fit and all manner of junk that I hadn't realised our lives would be so destitute without, had I not kept all that crap!

Then Susie vacuumed the faux wood floor that I abhor while I Spackle the nail holes. I have since decided against re-plastering. We are on a time crunch and I frankly cannot tolerate the smell of plaster dust at the moment, and well, asking Susie to plaster and sand that whole room is pretty much beyond the realm of 'helper.' Until The Beloved has gotten his feelings and worries in check, I do not want to ask him to participate. His head might literally explode if I add anything to it. Any project he takes on will be completed to perfection. I know this from our two plus decades together. If I ask him to re-plaster, he will go the extra mile and remove all the drywall and start fresh, with a proper tape job and plaster. Our first home was fifty years plus old. I longed for the smoothness that he brought about when he ripped out the drywall and re-taped and plastered the living room in that old house. If only I could ask him to...no, no, no...bad idea right now, and I am too impatient to wait until it will be a good idea. Besides, I have a sneaking hunch this time around that Baby Dear is going to come sooner, rather than later.

I'm pretty sure that two gallons of primer and two gallons of paint will soften the rough spots. Besides, the Baby isn't going to be licking the walls! Although...there are some spots rough enough, that if we leave them rough, we could Velcro the Baby's diaper and stick him to the spots! Nah...probably won't exactly qualify as childcare. But I'm sure he'd still be there when we got back! I scraped the bright neon pink spray paint off the mirrored closet doors (who the heck let's their kid spray paint their mirrored closet doors any color? Those danged things are expensive!) and Susie took them down and hauled them out. We semi-demo the closet which has some horrid wire mesh cubes ceiling to floor, which had been useful in their time but wouldn't be practical for a baby's closet. That involved scissors, pliers, screw drivers, hammers, a lot of knuckle scraping and a surprising amount of cussing. On my part. Susie wouldn't cuss in my presence if I whacked her with the hammer. Which I did. By accident. Twice.

And once on purpose. No not really!

So, the kids aren't quite comfortable calling the Baby 'It' any longer, now that we know he is a 'He.' Since The Oldest is a great fan of the hero in the movie Titanic, we jokingly start calling the Baby Jack. Then The Youngest, Might-As-Well-Start-Calling-Him-The-Middle decides that we should call him Jack-Jack from Jack Jack Attack of The Incredibles. And they do. Both of them. This is the day it happened. The day my sweet, precious, unaware he's been branded, innocent little baby got the family name he will likely have forever. Jack-Jack. Danged kids. Both of The Littles are a couple of Goobers! Goobers!

Friday, July 10, 2009

The Great Divide and Overhauling the Homestead Part III

I am certain that The Beloved did not kiss me good bye when he left for work this morning. I am equally certain that he did stand over my sleeping form, looking at me, with all the pain in his heart showing in his eyes.

Today Susie and I began what should be an outright demolition of the room that will be The Baby's nursery. That room was initially, when we first moved into this home, full of potential, lofty dreams, and the source of much creative brilliance. Instead of repainting the pepto-bismol pink walls and straightening out the crappy plastering so that I could have a permanent place for scrap booking without having to put every thing away each time, that room became the repository of everything we had no other place for, but still couldn't toss out. What was I thinking? Why had we kept so much crap? Did we really need to keep the TV with the little thingamajig broken off and duct taped to the back that would require almost the price of a new one to have repaired? Why not? And the daybed that The Oldest had outgrown, did we really need that? Well, yes, actually we did need that. But seriously, when we started pulling lids off of boxes of dishes I'd gotten along without, the old silverware that I'd had to replace when I realised we were having 12 people for dinner our first Thanksgiving a month after moving in and had not found the old, perfectly beautiful silverware, canned goods that while perfectly safe looking I would not in a million years open, for fear of toxic gas, much less eat, litter boxes that were carefully cleaned and packed in separate boxes because they are disgusting litter boxes after all but we no longer had any need for because both of our cats are outdoors, thank you very much...I really wanted to go back to my original plan and demo the whole thing. Contents included. But that would have required about ten grand that we didn't have. And besides...I needed something to keep my mind from dwelling on the great gulf that had begun to divide The Beloved and I. So we kept sorting and either carting stuff out to the newly cleaned, soon to be back-where-we started garage or out onto the newly established junk yard on the front porch.

Later in the day the Littles and I pick out some paint swatches to bring home. I have finally figured out what to say on the pregnancy announcements and I get them all printed and stuffed into envelopes before I can change my mind again. I take a late night trip down the street to the mail drop. They will go out first thing Saturday morning.

Thursday, July 9, 2009

Breaking My Beloved's Heart

This is a post I don't want to write. I don't want to know it happened and it still hurts me to remember that night. The Beloved got home. We progressed through our evening. He'd asked a few times if something was wrong. I think I mumbled something about being tired. We got the kids fed, bathed and into their rooms to watch a movie. I threatened them with loss of limbs if they came out before I said they could. I sat with The Beloved on the couch. I asked him to turn off the TV. He turned to me and I began...

I thought that the look on my face, that I'd sent the kids to their rooms, that I'd asked that he turn the TV off, the slow and quiet approach, the tremor in my voice, so many things that should have given him alarm but didn't, might have prepared him at least a little. It didn't. He was not prepared. Quietly I said, "I got the amnio results back." Pause. Why aren't the alarm bells going off for him? "We're having a little boy." Pause. Why don't I look elated? "He will have Down syndrome." Finally a reaction. He couldn't have looked more shocked if I'd stood up and slapped him across the face. He keeled forward and put his face in his hands. After a few minutes he straightened but was still holding his hands to his face and asked, "What are we going to do?" I said quietly that we'd know more after the 22 week ultrasound. The doctor would look carefully at the brain and heart and would have a good idea if The Baby would need surgery at birth or not. He said we'd be looking at a lifetime of financial burdens. I said that The Baby would automatically have state medical aid with the diagnosis of Down syndrome, in addition to our medical insurance. He looked me straight in the eye and said "We can't do this." He was slowly shaking his head no. I said quietly, "I can't kill it. I can't kill him. I've felt him move."

It took a long time before he spoke again. He enumerated the many reasons why we should not be having this baby. He is not an unkind man. He is a very thoughtful and giving man. His first thoughts were of what was best for his family; me and The Littles. His first thoughts when we found ourselves expecting were for me and The Littles. My health was a giant pile of ammunition in his arsenal of arguments. The needs and well being of The Littles was another huge pile. "But we talked about this. We talked about this very thing. You stood right here in this very room and said you would terminate if this happened." Now it's my turn to be shocked to my very core. "What? When?" He said that we'd discussed this possibility shortly after we found out that we were pregnant and that when Down syndrome was brought up he had said "I don't want that," and that I had said, "I don't want that either." And I did say that. I remember it now. I was walking into the kitchen. But I never intended it to mean that I'd abort. I did say that I didn't want that. But who does? Who actively desires to have one of their children be handicapped for life? Who actively wants for their child to have chromosomal abnormalities that may cost him a life of poor health? Who in their right mind intentionally wishes for their child to possibly, or quite likely, be ridiculed and hurt by the nastiness of others? Who? That's what I'd meant. I'd never meant that I would abort. And there it was. The great divide. A grave misunderstanding that I don't have the words to begin to straighten out.

"What about you?" he asks. "What is this going to do to your health?" I told him that the The Baby having Down syndrome would not influence the pregnancy. "And what about after?" he asks. "How long are we going to live? Who is going to take care of him when we die? What will happen to him then? How is he going to cope, to get along when we aren't there for him?" The very idea that either of The Littles would be able to care for him when we eventually die is too far off to consider. But The Beloved was looking ahead that they may well eventually be saddled with The Newests' care. That The Youngest, Soon-To-Be-Middle will eventually be out on his own and readily capable of marrying and caring for his own family is not really unheard of. He is a smart little whipper-snapper and I am convinced that what ever he decides to do with his life, he will be very successful. I could look to his rather high IQ as evidence, but I live with the child and see those wheels spinning and I already know, or at least suspect, that he's hatching a plan to take over the world. He may well build the better mouse trap. I can easily see him building an empire on graphic arts - at 6 years old he is really, really insightful and detailed with his art. I can see him being a rock star - he has a genuine love of a very diverse musical library. My big fear for The Youngest, Soon-To-Be-Middle is that he will take his giant ball of smarts and improve on my youngest oldest brother's career in crime. The kid is brilliant. That kid is much, much too cunning, charming, skilled and wise for his six years. Time will tell.

It's much easier for me to believe that if anyone takes responsibility for the The Newest, it will My Girlie. It would be like her. At ten years old, she has long said that she will not have her own babies, that she will adopt someone else's babies, "So they will have someone to love them and take care of them." Not what a mother wants to hear, but hey, the girl has a big, soft, squishy, loving heart. She isn't always the first to look out for someone else, but when she does see it, she will go the extra mile. And Lord help the person who is caught doing something mean to someone else. She will send the offender to meet Their Maker and pronto! She is the embodiment of the idea that she can pick on her younger brother all she wants, but Heaven help anyone else who does. She's always had a very tender heart. She's the girl who walks any injured student to the nurses office at school. She's the first one to respond if anyone cries. She's the girl who shares her little 2" brownie with four of her friends. She's the girl who receives candy at school and brings it home to share with her little brother, even though she says he's a pest. My sweet, sometimes fragile Girlie has always had a soft spot for the vulnerable. Maybe, just maybe, God above has known what He's doing all along in sending this particular baby to our family, ya think?

The rest of the evening was rather gloomy. The Beloved and I spoke very little, and then only out of necessity. I could see very clearly that he was struggling. And he felt blatantly betrayed. By me. Once that wall is up though, it stays up until he is ready to take it down and let me in on his pain. I know it's going to be a long time before that happens. But I also know that what is troubling the him most is the welfare of The Littles, and that eventually, he will incorporate The Newest into The Littles. I already have, but then, he has just heard this news that really, I have known all along.

And he still tucked me in that night.

Post Script: In a later conversation with The Big Sis, I was relating how shocked I'd been that The Beloved has misunderstood what I'd said. She said to me, "Yeah well, I'd thought that same thing myself when you told me about that discussion. That's why I thought when you first told me about him having Down syndrome, that you were going to tell me that you would abort. But I still don't know how I ever could have thought you would do that." So. The two people in my life who know me the best, the most intimately, the most nakedly, thought I'd said I would abort. My betrayal of The Beloved is clearly my fault. And I don't know how to repair the damage. Or if I even can.

Grandma Emmie & Michigan Purple

I may have mentioned or not, but like Mom and Dad, Grandma Emmie is not my Mother. Neither is she The Beloved's Mother. She is one of my very best friends. And a wonderful mother to her own now grown daughter. She was always so wonderful to My Girlie when she was born, and eventually to The Middle when he came along. She was just so much more than the Aunties who were not real Aunts. She was as wonderful and perfect to my Kidlets as my Mother would have been. Like a real Grandma would have been. But she wasn't older enough than I to be my mother. So, she got dubbed Aunt-Grandma. Over the years, I finally shortened it to Grandma M---E----, now Grandma Emmie for the sake of reading flow. And so she has been ever since!

So, the last phone call I had left to make was to my dear friend Grandma Emmie. I told her as simply as I could that The Baby was a boy and he would have Down syndrome. She was quiet for a bit and then asked gently, "Well, what are you going to do?" I told her that we were keeping him. She knew that. She's the one person I'd confided in, that I was sure as soon as I knew I was pregnant that he would have it.

Then she told me about a day she'd had to make up in college years ago. She had to spend an eight hour day at a group home for people with developmental disabilities. She said there were 8 people living there, from kids to young adult, and they all had Down syndrome. She was very encouraging as she described how impressed she'd been with their lives. They went about their normal day doing things normal people do. Making beds, Eating meals. Cleaning up after. Watching TV. Playing games. Talking over lunch. Washing dishes. Doing crafts. Reading books. Being a family. It made me feel better to hear her words because I knew she knew the fears in my heart. It gave me some hope that we'd be alright. "You are a strong person. You can do this. You aren't the first pregnant woman facing this news. There are others out there to help you. You will know what to do when the time comes." Her faith in me somehow gave me a little faith in myself.

I'd already called my on-line friend, Purple Rose, the one I'd confided in way back in March that I suspected I was pregnant, in the wee hours of this morning. She's been my friend-on-the-phone through thick and thin, through more late night work breaks and middle of the night chat fests than I could count. She'd visited with us for two weeks in March the previous year, and we'd been on-line friends since The Middle was just a few days old. I told her I'd gotten the amnio results. "And..." And it's a boy, I said. "Well, I already knew that. What else?" I told her he would have Down syndrome. She was quiet for a beat. I never know if she heard what I said, if she was thinking, or if she was looking for the next address she had to throw a paper to. "Well..." she finally says, "You already knew that, right?" She was encouraging. She said she knew we could do it. She said she was sure he'd be born healthy, to stop "going there!" She knows me too well.

Day Two

My first waking thought this morning was, "I'm having a baby with Down syndrome." I didn't want to get out of my safe, secure bed. The shock and mock bravery of the day before, the good face I'd put on for The Oldest and others had slid off during the night. It might be hiding under my bed. I might be able to find it. I might be able to glue it back on. Might need some staples. If only I could be bothered to try. That would require getting out of my bed. I lay there for a few minutes, rolling in my misery, and then I get up and start our day. There are announcements to modify. There is a nursery for a special little baby to plan. There are tiny little blue things to be bought. And later in the day, there is The Dear Daddy to tell. Crap!

Wednesday, July 8, 2009

The Call, Part II

Okay, so I allowed myself a few minutes of crying and actually let myself feel the despair that had been looming. I had confirmation of what I had known all along...right from the moment that pee stick clock gave way to the word PREGNANT. I don't know how I knew, I just did. And it had been said out loud now, so it was time to go to my knees and pray to the loving God that decided that this baby was worth while and would breath life. Dear God, please let him live to breath life. I don't remember all that I said. I remember asking for peace. And strength. I remember saying that I was sorry for having been so cowardly. I remember telling God that since He gave us this child, I would do what ever was required to bring him forth. I swore to God that I loved him already, but please, please let me know how to mother him. I knew that he was meant for us, but would I be adequate for him? Then a peace of sorts settled upon me. We already had two special needs children. What better family to add another? Why not us? And that started my quest to find out how best to care for the baby we would soon come to call Jack-Jack while we waited for a real name.

But first, a new dilemma. The Dear Daddy was working out of town. Would it be wrong to not tell him until he was back tomorrow night? Would I be able to keep this news out of my voice? Would he hear it over the phone? Would one of the kids let it slip before I could tell him? Okay...I herded The Dear Daughter back into my bedroom. Did she tell her little brother? "Mom. I really don't think he's going to understand this. I don't think we should tell him yet." Oh the wisdom of a ten year old. So, she hadn't told. I instructed her not to. Then we went to The Youngest, Soon-To-Be-Middle's room and in a unified front told him that Mommy wanted to tell The Dear Daddy about the baby being a boy, SO DON'T TELL! He agreed. In the meantime, could I really keep this information from The Beloved? Even for a day. What to do...

I rallied The Girls. The Girls being The Other Mommy, Bits and The Big Sis. The Big Sis is not really my sister. I had only brothers. She was dating my youngest older brother when I was five. She's almost ten years older than I am. When their relationship eventually dissolved, we kept her and after 40 years together, she is My Big Sister. Which is rather funny because I she stands 5' 1 1/4" at her tallest and until my recent weight loss, she weighed about as much as my right thigh! She was a teenager when she came into my life and we often say that we grew up together. I can't remember a time when she didn't call my mother Mom, and she's been there through all the events in life. The good ones, the bad ones, the new romances, the boyfriends who turned out to be turds, the great new jobs, graduations from college, the death of my Mother, the birth of My Girlie, and a year later, the death of my youngest older brother, the elation of finally getting pregnant with my now Middle son, the devastation of losing what was to be her namesake, Hannah Marie, the utter pain and terror of The Youngest being diagnosed as autistic, the acceptance of The Oldest following that same diagnosis, and the shock of me being pregnant again, this time without medical intervention, at the ripe old age of 44. We'd been there for each other for all of the sister stuff. Sometimes I think more than with her own biological sister.

First I called Bits. She knows about these things. And her row to hoe has been a rather rocky one. She's younger than I by a few years. Her youngest is only a few years younger than my Oldest. She cried with me when I told her the news, genuine heart felt tears for the baby we weren't having, but full of encouragement for the baby we were having. She'd known it was a boy, she said, but I'd kept talking about a girl and she wasn't going to be the one to burst my bubble. Now all I wanted was a healthy boy.

Next I IM'd The Incredible Miss S, my long time friend. She was a grown woman with a husband and children while I was still really a little girl, but she's always been a kindred friend. She also expressed her sorrow for the baby we weren't having, but was again, amazingly supportive and encouraging for the baby she hoped we would eventually come to our senses and name Liam Christian Addison.

Then I called The Other Mommy. I let my tears really flow with her. She's become so much more than my children's care giver. She is my friend, sister, mother, and sometimes cohort and partner-in-crime when a plot was afoot. She was saddened but also very loving and supportive. She is after all, The Other Mommy, and so being, she is all wise and wonderful and all things good.

Next I called The Big Sis. She was the most shocked of all. I don't think I'd let on to her or anyone else just how fearful I was of this very thing. Her first concern has always been for my health and well being. For The Beloved, For The Littles, for Myself, for herself. My health and well being, first and foremost. In a pregnancy complicated at every turn, she was always the voice of reason and would often say, "I don't know Trace. I don't know how you're doing it. I'm really worried about you getting through this without your health being compromised or you maybe even, God forbid, dying." So when I told her the baby would have Down syndrome she was floored. My very lady like Big Sis's actual first words were, "F%$& me!"

I think I actually heard her plop down into a chair. She'd never actually even come close to suggesting that I abort, but with this new development, the picture for her certainly became more muddied and uncertain. I couldn't blame her either. I shouldn't be pregnant again at my age. With my health. With The Littles needing so much and still being so young. With The Beloved already working so much. "What if you die, Trace?" My Big Sis can say out loud the things that scare me the most. She's my Sis. It's her job. We cried together and explored the "What ifs" together until she had to get back to work.

In all of my calling to rally support, the PHC had called the house phone and left a message. They said to come in first thing tomorrow morning. I called them back and said that I'd already spoken to Dr S, and knew the baby's gender and that he would have Down syndrome. Oh. No need to come in then.

Much later in the day I was standing in the bathroom and felt the baby kick really hard! I hugged my belly - my son - and told him, "Don't worry Baby. You're alright. You aren't going anywhere." And now that I have the news - no not that news - that news! It's a boy! I can start on the nursery. It will be a great way to keep my mind in the right place. As a good friend would soon tell me, "He's a baby. He is not a diagnosis. He's just a baby."

In the evening My Big Sis called and she was excited to tell me about her day at work. Her very next client that day was a woman who had raised a daughter with Down syndrome. My Big Sis told her about the news I'd shared that day and expressed frustration that she hadn't known what to say to me or how to say it. The woman was very kindly and was perfectly willing to explain how her life had been since bringing home a baby with Down syndrome, back in the day when these babies were hidden away in facilities and institutions. She told My Big Sis all about her daughter, her infancy, her childhood, her young adulthood, her successes, her heartbreaks, what she did for work, where she lived in a group home. And that not only was she a happy woman, but that her daughter had also grown into a happy woman. Just like any one else. My Big Sis somehow felt that she needed to apologise to me. She said she thought she hadn't been supportive. She said on one hand she just naturally assumed that I would abort, but on the other hand, she wondered how she ever could have thought that, knowing me as she does. I love My Big Sis more than I can say. Her promise to be supportive, to do anything she could for us, was a balm to my soul.

I've opened the rough draft of my pregnancy announcement a million times today. I want to incorporate the baby having Ds. I want to tell every one at once, in one fell swoop rather than say "Surprise I'm pregnant, but oh, (doom and gloom) the baby has Down syndrome." I didn't want it to come off that way. I wanted people to know it all at one time so I wouldn't have to explain to a million different stunned silences. But I have no ideas right now. I'll try again tomorrow.

The Call, Oh The Dreaded Call

I wish I had written a more detailed record of that phone call, but I think I was just too stunned finally having heard the news to do more than document the fact. Reading back on the file lovingly renamed 'Jack-Jack' I see only the sterile facts. It's a boy. There are three copies of chromosome 21. He will have Down syndrome. There is no test to determine how affected he will be. Only birth with give us that information. The doctor will look closely at the heart and brain at the 22 week ultrasound, but yes, do keep my appointment for July 22 at 20 weeks.

The actuality of that phone call, as I remember it, was of Dr S's voice being very warm and gentle. He didn't beat around he bush. "My dear, we have the amnio results and it is not good news." I asked directly, "Does the baby have Down syndrome?" "Yes, my dear. He does have Down syndrome. I wish there was better news, but that is what we have." He never contracts words. Ever. I asked if there were any more chromosomal abnormalities and he assured me that there were not. He did ask was I still sure about continuing the pregnancy. Yes I was. He said he still wanted me to consider the options before I really made up my mind for sure. Either way, he says, he will respect my decision and support me to the fullest. I believe him and thank him for his tact and warmth. Now cut sideways to my Dear Daughter, a very tender and sensitive soul, lounging on the couch in her blanket. I have tears softly rolling down my cheeks, but I'm not loudly boo-hooing. She knows something is up but she doesn't know what. The words she's heard so far mean nothing to her, so she has no reason to be alarmed, and Mommy being upset and tearful these days is frankly, I'm sorry to say, nothing new. So when I say to Dr S that the only way I'd terminate is if the baby was anencephalic and has zero chance of survival and would die anyway, she was suddenly all ears and the look on her face was terror. I damn myself for not taking this call into the bedroom. I quickly hang up with Dr S and bum rush My Oldest into my bedroom. I want her sequestered before she can alarm The Youngest, Soon-To-Be-Middle. He was happily playing in his room. I absently think to myself that I don't have to deal with me right now, because I need to comfort My Girlie.

I push her into my bedroom and close and lock the door. Her face is a reddened mask of tears and fear. "It's okay" I tell her very firmly. It occurs to me, not for the last time, that I'm convincing myself too. "Did the baby die?" No, I tell her. The baby is fine, he will be okay, I promise her over and over again but she just won't be convinced. Even while I'm holding her and stroking her silky soft back, she just won't be comforted. I finally get out the Doppler to let her hear for herself. Then I sit her on my big bed where she loves to snuggle with me and sitting across from her with our knees touching, I begin the hard talk. Mommy was crying because the big test Mommy had says the baby will have something called Down syndrome. Does that mean he will die? No. It doesn't. It just means he might be a little slower than some babies. He might not be as tall as her or her brother. They are projected to be 5' 11" and 6' 5" respectively. It might take him longer to crawl and walk and speak, but he will be a perfectly good baby all the same! At that point, what I knew about Down syndrome could be exhausted on all of one sentence. She has one thing to say and she says it with all the conviction of her soul, "It will be okay. He will be loved." Period. We laid down in my big bed and held each other for a while, me stroking her back, her hair, her face. Then, "Mom?" in a more perky voice,"Did you say it's going to be a boy?" I don't really know I tell her. I think the doctor said it is a boy, but I'm not really so sure. Let's call him back and find out! When I got Dr S back on the phone to confirm that we are indeed having a Little Brother, I gave my Dear Daughter a thumbs up! She was correct when she predicted a boy. With the tears now dried, she ran down the hall to announce to the Bothersome Brother that she'd been right all along and they were getting a Baby Brother. Dr S tells me again that he will respect my decision and provide any support that he can.

While The Littles are playing, I retreat back into my bedroom and lock the door. "It" is no longer out there. It's here now. It came for me. The words I could not utter, even to my loving God, have finally been spoken. Down syndrome. I settled in for just a few minutes of indulgent crying. What are we going to do now? It was a non-question really. That question was answered the instant when The Newest's, our Little Baby Boy's heart started beating. What will we do? We will have a baby. A Boy Baby. With Down syndrome. And it will be alright. Right?

Tuesday, July 7, 2009

Overhauling the Homestead Part II

It's been very busy around here! Susie and I have done more cleaning of the garage, hauled all of The Youngest's stuff into the front room, cleaned and rearranged the living room yet again, cleaned and rearranged The Youngest's room, sorted and hauled all of his stuff back into his room, then hauled all of the Oldest's stuff into the front room, cleaned and rearranged her room, sorted all of her stuff and hauled it all back into her room. Not to mention, the monstrous pile of toys in the hallway is gone! It's cleaned and sorted and put away! YES! I can walk through the hallway without risking life and limb! Our front porch looks like a junk yard, and the Dear Daddy says he fears it will cave in on one of us, but all of that will go away via donation truck on Thursday. Yippee-skippee! Now I can start on the nursery...it needs gutted and thoroughly cleaned and re-plastered and painted and carpeted. That's going to be a job! I've been looking at different nursery themes, waiting to find out if it's going to be sweet and girlie or sweet and boyish. I'm biting at the bit. And still, there has been no call. 15 days. No call. Not good.

Sunday, July 5, 2009

The Waiting Game

I am 18 weeks today. And the genetics lab has not called. It's been 13 days. With The Youngest, they called on day 10. They said all was well. They told me his gender. And the celebrating began. I went out and bought The Beloved a miniature child size baseball mitt and a baseball. All wrapped in bright yellow paper. Why haven't they called? Why aren't we celebrating? But I know why. It's still out there. I still can't say it out loud, but every day that goes by is another day that I am more sure.

Saturday, July 4, 2009

4th of July

Today we celebrated with hot dogs and hamburgers from the grill, with cheese please, and potato salad. Then The Beloved and I packed up the van with kids and pillows and drove out to the fairgrounds to watch fireworks. My sense of direction is really off kilter. The Beloved pointed out landmarks that I should be quite familiar with after over 20 years in this valley, but I got turned around completely when he made a U-turn!

Friday, July 3, 2009

A Purchase

I took The Dear Daughter shopping with me today while The Little Fireball napped at home with Miss Susie. We cruised down the baby isle and we picked out three packs of tiny white socks! My Sweet Girlie wants to buy everything in sight! I had to really reign her in but promised that we'd do some shopping just as soon as we know if it's a boy or a girl. She's going to be lots of fun shopping!

Thursday, July 2, 2009


It was a busy day. Lots of running around. Lots of errands. And a trip to the PHC for my post circlage follow up to the follow up. It seemed redundant, but I kept the appointment. My weight was %&#, so no gain! My BP was in the 160's/80's times three tries, so my Methyldopa was increased to 1250 mg in three divided doses. I tried to get them to increase it to four times a day, but what do I know? The Dear Daughter came along and was thrilled to hear the heartbeat, and the CNA let her hold the doppler and read the heart rate - 149! My fundus is about three fingers below my navel. I left with more vitamins, more iron, and instructions to increase the iron to twice daily. Oh joy. I'm going to love that, but my hemoglobin is only 11.

Between Miss Susie and I the garage is finished. For now. It makes me happy every time I go out there and see empty spaces. The front porch looks like a scrap yard, and it will only get worse when we start gutting the kids' rooms, but it will all be donated eventually.