I'm sitting on the side of my bed debating my next move on Words with Friends when my bedroom door gently opens and my freshly-turned (as in today) 17-year-old daughter bounces over to me with a small box in her hands.

"Look what I bought today with the money I got from Nana and Grandpa."  She opens the gold ornate box to reveal a palette of shimmering bronze, gold and brown eye colors.

"Wow," I answer.  "Those are really pretty."  As I say those words I am at the same time wondering how my daughter turned out so different from me.  In this very blog I could envision me writing about the problems with women feeling they need to hide their faces in color.  I would write about how cosmetic companies market to women to make them feel inferior--that the features they are born with will never be good enough.  But at the same time  I am torn, because for Sxylar the freedom to play with these colors is a form of expression.  For her it is an art.  She doesn't see the act of wearing makeup as limiting.  She sees it as limitless.

She and I are so different.  And I realize this is okay.  And I also realize I am not always right.

I remember an entry I wrote back in March.  In regard to Clara having Down syndrome I mentioned that none of our children turn out the way we expect them to.  They don't.  Let them be who they are and they turn out better.

I look at this young woman sitting beside me and I smile because I raised her.  And she is beautiful.  Happy birthday, my baby girl.  I'm so proud of you.  Thanks for helping me see the world through your eyes.

Your bad decision changed all of our lives, but I'm sure it wasn't the first bad decision you've made.  I couldn't have been so lucky to catch you on your first offense.  I'm not naive enough to believe it.  I am lucky that I caught you at all.  I am beyond thankful that I caught you.  Otherwise, I would still be with you and you would still be violating us.

I saw the anguish on your face that day in court.  I know you are in pain.  I know you regret that you got caught.  I know that is all you regret.  Because now you have to find someone else to violate and you were so comfortable here violating my baby girl and God knows who else.

I don't want to write you to berate you.  You will get plenty of that for the rest of your life or at least while you're registered as a sex offender.  I hope you have to register as a sex offender, because then at least your next potential victim will have warning that I never had.

I don't miss you.  I've moved on and I'm quite happy with life as it is.  I do, however, still live with the guilt that you were sneaky enough to win my trust and do this to us.

I never want you back.  I don't even contemplate it, and I haven't since that night.

You did not break our hearts, and you did not break us.  What you did made us stronger because now you can never hurt any of us again.  If we have to be around you, we will be watching you.

Take your pervert phone and enjoy it while you can.  I feel strongly that karma will find its way to you and justice will prevail.

I'm done.

down syndrome is okay

I originally started this blog as a place to release the pain I was dealing with upon learning Clara, still in utero, had Down syndrome.  As I learned about Ds I became more and more comfortable with it.  When she was born I absolutely and unconditionally loved her but wished I could still take that extra chromosome away from her.

Today, just under two months shy of her first birthday, I wouldn't change who my little girl is for the world.  I love her as she is.  I now believe, contrary to what I was saying a year ago, that this is who she was meant to be.

I see other parents in such a rush to get their kids caught up with typical children and it makes me feel guilty that I am so accepting of Clara as she is.  I question my parenting.  Should I be pushing her harder?  Am I at fault if she isn't meeting typical milestones?  I don't know what the right answer is.  I want her to be happy, and I guarantee she is getting unlimited amounts of love from a mommy who is damn proud.

bath time

There are times I find myself trying to seer a moment into my mind, as if to tuck it away so I can retrieve it in my later years when I need a happy memory.  Or maybe it's for if I go to heaven, I want to remember the beautiful things I experienced here on earth.

One of those moments was tonight.

The babies always bathe together.  It's easier that way.  I bathe Clara first and I always let her end her bath with splash time.  She sits up after being scrubbed down and looks between her feet and pats the water.  She loves it.

Tonight Lxkas was sitting next to her and  lightly splashed along with her, but minding his own water territory.  He is twice her size, but with their wet, dark hair and smooth, brown skin they were equals in their love of the water and it was a beautiful sibling moment.  I wished I had a camera handy but I don't even think it could have come close to doing the moment justice.

new job

Yes, I have joined the ranks of the employed working as a temporary social worker for the state.  It will last at least four more weeks but I have an interview at the end of the month for a permanent position.  I want it bad.

letter to him

After work today I had an appointment with my therapist.  She is concerned that I'm bottling my pain.  She suggested I either write him a letter (but not to deliver, of course) or talk to a chair in which he is pretend seated.  I told her I didn't think I could pull off a Clint Eastwood but that I would give the letter a go.  I'm going to try and accomplish that task this weekend and post it here.  I think I might have a lot to say.

are you a princess?

I was changing the sheets on the bed a bit ago and Lxkas was in my room doing what Lxkas does (getting into things he shouldn't), and he saw a jeweled crown his dad had purchased from Bath and Body Works for my birthday last year to compliment some lotions.  He asked, "Are you a princess, Mommy?"

"Yes," I said.  "Mommy is a princess."

I have some good news that I will share in my next update, but for this update I dug out a journal entry I wrote several years back and I hopefully improved it.  I wanted to post something fun that has nothing to do with my problems as of recently.

Sometimes I feel like I have  lived many lives as I have so many diverse memories.  This is a good one for me:

James Brown declared it and Gwen Stefani confirmed it when she sang: “The moment that I step outside / So many reasons / For me to run and hide.” It is a man's world. As women, we often find ourselves tightly holding the hand of a man so that we too can enjoy certain experiences typically reserved for men, such as enjoying the great outdoors. Of course, it's not mandatory that we have a man at our side, but I don't think any woman can argue that we aren't safer with a trustworthy male to see after us. After all, there are creepy people who lurk to harm us, animals that hunt us, and situations where only muscle and brawn can save us.

I believe I was in the fifth grade when I learned it was a scientific fact that by puberty boys were on average physically stronger than us girls and it would remain that way for the entirety of our lives. It was devastating news to me, and it angered me. I had a brother one year older and I had never hesitated to meet his challenges when we would butt heads. Upon learning this my world changed forever and I learned to back down in non-obvious ways to my older brother, now knowing he would eventually mop the floor with me if I didn't. I never let him know of my fear, but from then on it was there.

A lot of times life doesn't seem fair to the physically weaker sex, especially when it comes to exploring nature. If you're a single woman who wishes to venture out into the wilds you will soon realize willing men to act as escorts aren't always to be found, especially if they know they will get nothing in return. Yes, you know what I mean. And don't look that way, because even if you're a guy, you know this is true!

I was lucky one summer to have the friendship of a lesbian who like me, loved to fish. But I just enjoy being around natural water. Take me sailing, fishing or snorkeling, there is nothing more freeing than enjoying untamed nature. Water can't be tamed, though we might think we have control of it with our man-made dams and lakes. But, if you throw a torrential season of thunderstorms onto that, we soon find it's the water that controls us.

But anyway, for one summer, with Jules by my side, I was able to experience what it was like to explore nature as a fisher(wo)man without restrictions. Jules and I would fish after work, late into the evening and often continue into the early morning. We'd trek across fields after dark to find fishing holes. We'd park on the side of roads and sit under bridges. No body of water was off limits if it looked like it might be a good hole for catfish.

There is one excursion that always makes me smile when I think back on it. One of our co-workers hosted an annual mid-summer hog fry, which with my invite we both attended. I remember the sky that day. It was beautiful, vast and blue accented with fluffy, dreamy clouds. We were sitting under a shade tree exchanging stories with various acquaintances and on the front porch were about six men--three with fiddles, three with guitars--strumming, stringing, and singing western songs that brought me memories of my grandfather.

Everyone knew Jules and I were close, and together, I felt there wasn't anything that the two of us couldn't conquer. I'll admit, sometimes that facet of our friendship could cause us to find ourselves in some tricky situations, but it was never dull and it was almost always fun. One of the best elements of my friendship with Jules was that together we were impulsive, and at around 5 pm while everyone was just settling in for an evening of music and drinking the urge to go fishing struck us, and we were off to the lake.

We had a favorite spot. We had made various fishing buddies at our favorite spot. In fact, Jules had almost made a boyfriend at this spot but she ended up refusing him. I think she enjoyed the game. We had sat through rain and whole nights at this spot, and it was known by anyone who frequented the area that this was our spot. Fortunately, on this night it was also vacant so we unloaded the car, packed everything on our bodies, made our way down the steep, rocky banks of our cove and eventually found ourselves seated quietly with our poles toward the water enjoying the sounds of the outdoors. Julie was by nature a loud, sometimes obnoxious gal, but when we were fishing, she became quiet.

As the sun began to set, I felt a small nudge and a hard pull. I yanked my pole and began reeling. I told Jules it was a big one. She hustled to the edge of the water for an informal meet and greet with our feisty catch. When he came splashing ashore she wrestled him in and ended up on top of him. I ran to her with the stringer and it took both of us to get control of the situation. He was not a happy cat and he let his anger and strength be known. By his size it was obvious he had spent years avoiding this fate. We estimated he weighed between 12 and 15 pounds. His head was large enough to put a whole hand in his mouth, which Jules did, becoming surprised when he clamped down. The excitement adrenalized us and we settled back in for what was sure to be an active night.

For the next three hours we didn’t catch a thing. To appease her restlessness Jules would break the silence to comment on how big “Junior” was and she would visualize how she was going to catch his sister. And all this time she had been drinking beer.

I had known early into our friendship that Jules more than liked her beer. Since I was driving I had quit early on. But now it had gotten dark and cold. The night wind was drying my sinuses and the alcohol from earlier seemed to only be adding to my discomfort. I decided to go to the store to get us something to eat along with a Pepsi for myself. I also wanted to get the jacket and rain slicker out of the car to keep us warm.

When I returned I could tell that she had reached her alcohol limit because everything she said was getting on my nerves. I just sat quiet, sipping my Pepsi--until she tangled her line into my line, a rookie mistake a more sober Jules would not have made. She was also sitting too close to me. She started to stand up to get us untangled, but she never made it to an erect position. Instead, I watched her crumble down into the large rocks of our steep bank, her body rolling into two open beers (neither was mine), the tackle bag and my Pepsi. I think I cursed at her as she was struggling and wallowing in the beer and Pepsi mess just below me, trying to get her bearings about her.

When she finally got settled back in, she cracked open another beer. “You really think you need that?” I asked.

“Nope,” she answered. She poured it out and asked if that made me feel better, to which I replied in the affirmative. But it didn’t make me feel better. My Pepsi was gone and my rain slicker, which she was wearing, was muddy and smelled of mixed drinks.

Around 11 pm I told her I was packing it up. After we got everything to the car I went back down to the water to fetch Junior, who had been actively thrashing and threatening us the whole time. I pulled him from his home and passed him up the bank to my friend. As I was crawling up I heard a noise and looked up in time to see the backside of Jules rapidly descending upon me. I put my hands up to stop her, catching her rear, and she kept struggling to get back up like a trucks tires stuck in mud.

I told her to hand me Junior but she ignored me and kept trying to climb with him. I grabbed the back of her jacket and said a bit more sternly, “Give me my damn fish.” I snatched the stringer from her hands and climbed up past her. If she had fallen back into the water I thought I wouldn't have turned around for her. At least, at that moment I liked thinking I wouldn't have. It was a fun thought, even if I knew it lacked truth.

Once we had everything packed I put Junior on the pavement and backed the car up to turn on the headlights. We shot some pictures with him and then I filleted him as Jules quietly watched. On most occasions we filleted our catches as a team, but I think she was starting to sober up and had enough sense to know it was time to let me have my space.

On the drive back to the city I stopped at a convenience store for a better cleaning than the lake water offered. The scent of fish guts on my hands was more than I could bare. Jules obediently followed me inside and purchased a fountain drink while she waited her turn for the restroom.

As I was digging for change to pay for my fountain drink I noticed the clerk looking at Jules standing behind me and I smiled. I’m sure we were a beautiful sight. My pants were wet from the knees down, my tennis shoes were soaked and untied, my long hair was a mess from the wind; my sweater was striped, but the shirt underneath was plaid, and I had fish scales in my eyebrows (from the shad). Jules wasn't fairing any better: she smelled like a brewery and adorned mud all over her pants from rolling in soda and beer, her hair was disheveled as well, the raincoat she wore was in same condition as her pants and she wore shiny gold hoop earrings that didn’t make sense compared to the rest of her. But when you took the sum parts of us and made them whole? We were both damn satisfied.

Jules has since moved to Florida, and I'm sure she's enjoying catching even bigger fish out there, but I'll never forget her and the summer she taught me how to live freely, despite the obstacles that women must overcome to enjoy that freedom. Sure, she had her imperfections, but hers were a lot easier to swallow than the sexist judgments often bestowed on us by the opposite sex. From her I learned diamonds are not a girl's best friend. Lesbians are.

On the morning I was to be in court to extend the protective order I also had to be in orientation to learn what I was to do in return for receiving state assistance.  Somewhere I had put the notion in my mind that the orientation was going to be quick, lasting only an hour and a half.

A social worker announced the room was open for all orientation attendees.  I sat down in a grungy room, finding myself among several other women who were sailing similar vessels, though I'm sure some were crossing stormier seas.  One had brought her young child.  We were told not to bring our children, which is why the state was paying for our daycare.

"Ms. Alexandria gonna throw a fit when she see you brought that child in here," stated one of my classmates.

The woman with the child had a masculine jaw line.  She wore no makeup, her eyebrows could have used a good manicure and her sandy hair draped the middle of her back.  She reminded me of a guy I once dated.

As she shuffled her child and her belongings around the seat in front of her she replied, "Well, she's going to have to accept it because I'm homeless and I ain't got no where else to take her."

Turns out she was over-confident. Ms. Alexandria threw that fit and made her leave, but not before having to provide her with bus passes so she could get back to the Salvation Army shelter where she was staying.

Once homeless was taken care of, Ms. Alexandria started handing out sheets we were going to review during the course.   We were already a quarter into the hour and she mentioned something about when we break for lunch.  My court appointment was just an hour away.  Lunch was three hours away.  I felt guilty as I explained my predicament.  With much annoyance from our leader I was dismissed as well.

I wasn't prepared for the court hearing because I'd never been through a protective order process and I can't afford an attorney.  I was winging it.  The only person who had even slightly prepared me was my counselor who felt it was best that I continue with the order until the criminal investigation was over.  Then we also discussed what might get us to supervised visitation once the investigation was over.  She was a good source of information that I desperately needed.

My counselor and I agreed I would return in a month.  I thought I was doing well and remaining strong.  Perhaps she agreed.  I'm not sure.

The judge was the same judge that had granted me the first protective order and she didn't hesitate to extend it another 90 days for me and the children due to the criminal investigation that was ongoing.  He was there and she asked him if he understood.  His voice quivered when he answered, "Yes."  That was the only word I heard from him that day, though I could tell he wanted to say more when I saw him outside the courthouse prior to the hearing.  He saw me first.  I looked up and he was looking at me, his face crumpled in what I guess was supposed to be emotional pain.

I've stayed busy, trying not to focus on the investigation.  The state has kept me busy, too, requiring me to record the hours I spend job hunting and provide proof of employers I am contacting.  This past week I made up that day in orientation, followed by a day of test taking to assess my skill levels and job placement probability.

Homeless had also returned for orientation and testing.  I didn't speak to her that first day, but on test day she made sure our paths crossed a bit closer when we were dismissed for a half hour lunch.  I had brought my lunch.  I went to my car to listen to the radio while I enjoyed my salad, cottage cheese and yogurt.  I was just opening my cooler when I was interrupted by rapping on the passenger side window.  I looked up and it was homeless.  I rolled down the window.

"Mind if I join you?" she asked.  I think my surprise was apparent and perhaps my jaw had dropped because before I could answer she asked again: "Can I join you?  It's cold out here!"

"Uh, sure," I answered and unlocked the door for her.  As she settled in she was holding a pack of cigarettes.  I could see from the placement of her fingers one was eager to be removed from the pack.

"Do you mind?" she asked.

"Well, I have the babies' car seats in here and I don't want them smelling like smoke."

"I understand.  I have babies, too."  She let the window down all the way and stuck her head and half her torso out it.  "What if I smoke like this?"

The desperation of a smoker is a a powerful thing.  "That's fine," I gave.

We spent that half hour discussing her accommodations at the shelter.  She complained of having to rise at 5 am and being rushed out for the day.  Then if she didn't return by 7:30 pm she would be locked out for the night.  I explained to her that if it was like a Holiday Inn people wouldn't have a reason to get back on their feet and she was lucky to have what she did.  She and her family did, after all, have their own private room.  She conceded that I was right.

I found her situation fascinating.  I was tempted to ask if I could come see it, but I didn't want a new friend.  The last thing I needed was someone needy needing me.  We would both sink.

The last time I saw her was the next day at our drug-screening. A couple of the girls who had been in orientation and testing were also there, along with a young pregnant woman I had never seen before.  She was beautiful because of her youth, which granted her smooth dark skin and a taut physique.  She was majestic in how she sat, her hoodie pulled to the top of her head, the rest hugging her small growing belly with her arms folded across and her back straight.

While we waited for the screening she spoke softly about the two cousins she'd lost in the last year--the first shot by a policeman who mistakenly thought he was pulling a gun, and the second whose body was found decaying in a wooded area, the exact location she didn't know, but she was attending the funeral the following day.

What different worlds we all lived in.

If we passed the pre-screening we wouldn't have to take a pee test.  The pre-screening was a two-sided sheet of paper.  The front side seemed to be a mental evaluation and the back side consisted of a billion yes or no questions, basically asking the same four questions in different ways.

One of the questions asked if I often see images from a traumatic event in my life.  I answered no.  I lied, but only because I was in denial.  I told myself I was not traumatized.

I was the only one of us who passed the pre-screen.  I felt guilty as I said farewell to homeless and the others--guilty because perhaps my disastrous life couldn't even touch their experiences.  I didn't want to dwell on what could have been worse.

Since then, I have realized that I have been suffering emotionally during the times that I am alone, like on the drive downtown in search of employment after dropping the babies at daycare.  I'm looking at the road in front of me, but I see him, knelt down in front of the bathroom door.  He's pathetic--like a drug addict--he has no self control.  He looks up at me, surprised I'm suddenly there.  The memory is so real and the tears just burst.  And I hate him with everything in me because he's so weak and disgusting and he did this to our family.

There are no nice words to describe him anymore, but I'll refrain from using the really bad ones.

Then this morning I'm alone and I see him again.  And again.  And the disgust and anxiety overtake me.  I'm alone and I question who I was living with.  I was always alone.  Perhaps I am traumatized.  I want to talk to my counselor, but the appointment is still two and a half weeks away.

As I write this I see him and my eyes have become wet.

My world isn't that much different from those other needy women I met last week.  Isn't that why our paths have crossed?  We have no choice but to keep sailing and pray we find calmer water ahead.  And a nicer vessel.

I recently removed someone from my Facebook friends list because he made a racist remark.  I don't draw anymore lines to be crossed for racists.  If you're racist you're out of my circle.

But what led to that remark was a photo he posted of his shopping cart while he was in line at the supermarket.  I commented that I also liked Grape Nuts.  What I didn't realize until some comments following mine was that his photo was not meant to capture what was in his cart, but what he assumed about the people in line ahead of him.

In the photo caption he remarked he was glad he worked and was able to pay for his own food.  The comments conversation evolved into a discussion about the people ahead of him, who he and the other commentors assumed were purchasing their food through welfare.  I argued with him that sometimes people find themselves in situations they aren't prepared to be in, and he commented that if he had to shovel shit at the kennel he would because he was better than any person that took government handouts.

Okay.  He is entitled to that opinion.  He and I obviously don't see eye to eye.  I didn't like his stance on the subject, but I can't agree with everyone, and I usually agree with very few in this state.  Then he likened what he saw to an episode of Good Times and that's when I unchecked the "friends" box.

Well, I'm glad he is no longer a Facebook friend, or real friend for that matter, since I now find myself relying on government assistance to make ends meet.  Yes, it's nice when you find yourself in a situation where you need employment immediately and you can hop right into another job because you don't have to arrange for daycare, or because you can accept any shift because you're not responsible to minors in the evening when child care centers are closed.  It's nice when your children are grown and you are responsible for no one but yourself, because you have a lot more freedom to choose.  It's nice when you're a man and there are an abundance of manufacturing jobs available to you, and because of your physique there are more opportunities period.  I don't have all of those luxuries.  My opportunities are less than half of that, but I'm trying.

I'm not proud of my situation.  In fact, I'm a little ashamed.  But I'm also ashamed of how I got here even if the fault is not my own.  I don't offer information on my situation to anyone but my family.  I've been in this situation for going on a month now but I feel like work is on the horizon.  I have some good leads and good people who are rooting for me.  I just have to have patience.

My priorities are always shifting.  Right now my top two are finding a job and living longer.  Oh, and I've finally decided what I want to be when I grow up.

When I was recently met by the Department of Human Services following the incident that changed our lives, I found myself less than impressed with the woman who had come to my home representing the organization to take a report.  She wasn't compassionate toward any of us, and I don't necessarily expect that, but when she sat on my couch and began texting I became perturbed.  An officer was sitting across from her writing his report.  After several minutes I finally spoke up:  "I feel like we're waiting for something?"

She looked up and looked at the officer, "I'm waiting on you."
To which he replied, "Oh, I was waiting on you.  I thought you wanted to walk through the house?"

Did they really think I wanted them kicking back in my living room (she had made herself very comfortable on my couch) for the evening texting and what not?

People like me, going through what I was going through at that time, shouldn't have to put up with this type of disregard for my situation and invasion of my personal time.  I think I could do her job better.  I think I could do her job with more empathy and more compassion, and I would be damn good at it.  Nobody understands me when I tell them, because after all, I had a really good job as a marketing manager, and I made good money.  But money doesn't make me happy.  I know that now.

I want to be a social worker.  And this worker is not my sole inspiration; it's also Clara.  It's all my children.  It's my compassion for people who find themselves down on their luck at no fault of their own.  It's mothers of children with disabilities who have limited resources and need a little guidance and help.  It's people who need someone to help them that understands.  And I understand.

I took a required state test for the position and passed.  Passing is a 55 and I made a 78.  That's not a great score, but I happen to know a social worker who has a masters in this type of work with a minor in psychology and she made a 79.  And she's smart!  I'm just waiting on that phone call for an interview.

And yes, going through this incident has made me realize I need to live forever--or at least as long as Clara is here.  While that's not likely to happen, I am heeding advice from various articles giving tips for life longevity.  One is eating a handful of nuts daily, which has been linked to longer life spans.  Another link is having a waist that measures less than half your height.  I have some work to do in that area, but I'm doing it.  I'm eating better and I'm exercising.

According to a report by UNICEF, annually, children with disabilities are 1.7 times more likely to be the victim of abuse than their non-disabled counterparts.  This will not happen to Clara on my watch.  Nor will it happen to any of my children ever again.

I like my life to be smooth and quiet, free of drama.  When I think of women who need the assistance of abuse programs, and realizing I am stereotyping when I do this, I think of women who are weak, have a habit of making bad decisions and are probably not well educated.  So, when I was required to make a trip downtown today to file an emergency protective order, and I had to do this at a family safety organization, I felt a bit humiliated.  I had no choice but to swallow my pride.

The entrance to organization, as you would expect, was monitored by security.  I had to have a bag check and a wand scan (I'm not sure what that is called). I had to check-in and then I was assigned an advocate as my children were assigned to the playroom.  My advocate directed me to a cubicle and as we made our way there we passed other women who were visiting with their advocates.  It looked like a busy morning.

I was disappointed to learn I would have to return that afternoon to see the judge. I knew I had to do this, but it couldn't be over with soon enough.

After running errands and eating lunch, the babies and I returned.  A small group of the violated were led to our private court.  It didn't look like a courtroom.  It was a small, dark room with grey cinder block walls and about 10 office chairs facing a large computer monitor perched upon a pedestal.

The process was explained to us by one of the clerks.  We were going to skype with the judge from her courtroom at the courthouse in the next building.  The clerk gave the floor to a chaplain who talked about free counseling and services that were available to us.  If we needed anything, or just to talk, we could find her after the session.  Then she picked up a basket and asked each of us to take a hope blossom, and if we had children to grab one for them.  They were hand knitted or knotted flowers created by retired volunteers and were a symbol that we were not alone, that people cared and help was available.

I loved the idea of this and picked up one for me and one for Sky, and then later I asked if I could have one for each of the babies, too.  To me these symbolize a new beginning and that each of us will be stronger for what we are experiencing.

These are our hope blossoms.  The duck is a toy given to Clara by the child care worker and is made by the same group of retired volunteers.  I guess it is a hope duck. :)

Then the judge came online.  I wasn't surprised when our screen froze while the judge was speaking, and then we lost sound.  The city's technology is no better than that we have in our homes.

There were three cases.  As she called the first one I learned details of this young woman's experience that I would rather not have known.  Again, I felt shame that others would hear the details of my case.  Fortunately, during my time in the "captain's chair", as they called it, she didn't let the details slip.  As she granted my order for me and the three children she simply said, "I'm sorry you went through this."

I will see her again in a couple of weeks to decide what action, if any, to take next.

When we returned to the "safe center" we were welcomed back with snacks and beverages as we waited for the paper copies of our orders.  The chaplain visited with each of us to see if we had any needs, and stressed the importance of seeking counseling, which we are already in process of through another organization.

Once the orders arrived, I went to pick up the children in the next room.  We received parting gifts.  The worker let Clara and Lxkas each have a toy, or two, and also gave each a blanket, again made with care by the organization that made the blossoms, and the duck.

This one is for Lxkas.  It still has a tag that says it was made by Gloria.  Thank you, Gloria.  It will keep him secure through his toddler years.  Thank you for caring about people you will never meet.  

Clara's blanket didn't have a tag with a name, but the work on both is beautiful, and I am appreciative of the person who made this one as well.  

Our reasons for seeking the order are ugly, but the process through which we went to accomplish the task was made pleasant by a wonderful organization.  Abuse does not discriminate.  We are not alone.  There are people that care, and help is available.  Hope blossoms.

I had opened the front door to see if my sister had arrived yet to pick up her cat which I had been sitting since the previous day.  She was wary that apartment inspectors might find the little beast and require the pet deposit that makes cat ownership a costly pleasure.   I didn't spot her or her children but I was lured out by the mixture of humidity and cool air that had arrived with the evening dusk.  Baby Clara was in my arms and Lxkas followed.

Seated in a lawn chair I had purchased years ago after my split from Skylxr's father, Clara and I enjoyed the instability in the air while Lxkas asked questions about trees, grass, dark and night.   As he explored the little world close to us my mind wandered.  I never sat outside anymore.  It was a nightly habit of mine before I stopped smoking.  I would come out, enjoy a cherry flavored cigar and ponder life.  Something about sitting outside watching the world causes ponderation--the act of pondering (my word).  Maybe I need to sit outside more often, because it is calming and it brings clarity.

Experiencing the change of the seasons, and particularly evenings like this one, remind me of being young.  I can feel the night air of years past when friends and I strolled the entire perimeter of the football stadium, wading through strangers, a foreign band, the glare of the field lights and the excitement of the home team, hoping to cross paths with familiar faces, which were inevitably always found.

I remember with autumn came the smell of leather jackets worn by boys who thought they were men, and I remember going to bed with achy legs from spending too much time in the cool night air.  And autumn always reminds me of trick or treating, year after year, in the cold, in the rain, laughing and running with candy as our sacks would begin to bust from the weight of all the sweet treats.

And then on the heels of the season, winter swooshes in to wipe it all away.  Gone are the shorts, the tans, the leaves, the insects and the flowers.  Change arrives and no matter how badly we want to hold on to the previous season nothing can stop it.

My life is filled with change.  I hadn't sat in this lawn chair and enjoyed this front yard view since Cxdy had moved in.  And here I was, sitting in this chair enjoying the slower pace and he is gone.  Everything I thought he and I shared has been wiped away, and we can't get it back.  Our relationship hit winter and died out fast.

It's not really anything I can write about just yet, if ever, but I'm sure if he could rewind time he would have made better decision.  I can say that I'm hurting and I'm sure he is hurting.  Skylxr is hurt. The whole family hurts, but what has been done cannot be erased.  And the hurt has many dimensions.  This is one of the worst kinds of hurt.

Whatever happens, I know I will be fine. The seasons of my life will continue, and I will have new experiences and moments to treasure.  How can I not?  I have two little ones to make sure it happens.  I can look forward, and I can see through my pain.  There will be no pity parties here.  Not today.

Onward we go.

I see that I have neglected this blog for the month of October thus far, but with good reason.  As of late, I have found a couple of things to keep me busy.

First, I volunteered my soul (unintentionally) to a political campaign for a tribal council candidate.  His team squeezed every bit of free time out of me they could muster.  I made phone calls on behalf of our hero candidate to announce upcoming meet and greets, remind fellow citizens to vote, question them about who they supported and ask if they would mind us putting his sign in their yard.  On most calls I was met with the question:  "When is the election?"  And the statement:  "I don't know much about any of the candidates yet."  I'm thinking these people need to get with it, because we're only days away from election!

I admit, after a few days of seeing how hard hero candidate's team was going to push me I resisted a bit, but out of guilt my relenting weakened and I was back in the game in time for polling day, in which our hero candidate--lost.  However, my name remains fresh in the minds of a few tribal citizens should they come across employment in which they might think:  "I know the perfect candidate for this job!"  That would be yours truly, by the way.

And while all this was going on, I found inspiration.  The Buddy Walk was coming up, and I'd never participated in or even heard of the Buddy Walk until this year.  I didn't know what to expect.  I was going to get a few family members to walk with us and figured we would go easy and check it out our first year.  Luck walked up behind me and smacked me in the (what sounds good to smack?) when a certain public relations employee of a certain tribe asked if we needed a sponsor for our Clara.  Yes! yes! YES!  Suddenly, we found ourselves in a competition to build a strong team and raise the most money, because you know, it's good for the Down Syndrome Association AND we could win prizes!

I found two more big sponsors before the event, and the support of more family and friends than I knew cared.  It turns out a lot of people care, and a lot of people love.  Clara is loved and I am in disbelief.  And when a team of supporters gathered around me as I pushed my babies in their stroller, I felt my eyes fill with tears.  This meant something.  It was just a very special day and it reminded me that whatever obstacles we have to overcome in the future we will not be alone, and we have pictures to prove it.  Fortunately, I was wearing sunglasses.

We didn't win the most money, and we didn't have the biggest team, but we had a very strong showing.  Our team was able to present $4295 to the Association which is nothing to balk at.  Either fortunately or unfortunately (for them or for me) I feel compelled to beat that number next year.

And while all that was going on, I was also asked if I was interested in serving on the board of our local Down Syndrome Association chapter.  They presented it to me like, "I don't know if you're interested or not.." and I stopped the conversation right there and exclaimed, "I WOULD LOVE IT!"

October has been a good month.  It was exactly a year ago in October when my doctor first dropped me a strong hint that Clara would be born with Down syndrome.  I'll never forget the devastation I felt because it is such a juxtaposition to what the reality of the situation is--which is, I am so in love with this little girl.  Label her what you want, she's just beautiful.

Taken earlier today.

Picture day for the DSAT calendar, last week.

Some of our team members walking for Clara.

Front of our tee shirt.

Back of our tee shirt.

What I had been dreading was much easier than I had built it up to be.  I thought I was going to melt with worry, and I feared she might react badly to the anesthesia, but once they carried her back and I got past the initial tears I was fine, and it turns out she was better than ever.  Clara had her ASD patched with an occluder last Tuesday, September 17, 2013.  It turns out she didn't have pulmonary hypertension.

I have pictures of the occluder in place.  I have pictures of her now perfect little heart.  My little baby is out of any danger.

Her blood platelets are good.
Her heart is good.
She is good.

What now?

Enjoy her with each day that comes.  The future is ours.

The t-shirt design for her Buddy Walk team.  We are walking on October 20 and she has secured a $2500 sponsorship from the Muscogee (Creek) Nation.  Go, Team Clara-Boo!

It's really hard for me to see Clara as disabled.  I know she meets the definition, but to me, she really is the cutest little girl making strides in her own time.  I also know that she's still a baby so it's not as easy to see.

I've mentioned it on my Facebook page already, but Clara is sitting up now.  It was the last goal her early intervention team and I had set for her to meet this first six month period, and she did it with a week to spare.  When she sits, she puts her arms in front of her between her legs, her palms flat to the ground and she looks at me as I cheer her.  Her face says, "Okay, Mom.  When you're done I'd like to get back to wiggling around on the floor playing with my feet, please."  I don't think she sees the usefulness in this exercise yet, but we'll keep doing it and eventually she's going to like it, right?

As she accomplished this last goal and I was pumped with excitement, I started thinking about our next set of goals that her team and I will write this week.  I've mentioned that Clara doesn't sound consonants; only vowels.  I thought that should go on the next set of goals, and so last night I was saying "mama" and "dada" to her repetitively, just to give her a little taste of what's ahead.  This morning I was lying in bed and Cxdy and I were just starting to stir as Clara was already awake and babbling in her crib.  My head popped up when I heard, "dadda.... dadda... dadda.."  I couldn't believe my ears.

"Did she just say dadda?" I asked Cody.
"That's what I heard,"  he sleepily replied.
I jumped out of bed and confessed my pride to her as I changed her diaper and drowned her in praise.

However, I haven't heard it again so now I'm wondering if it really was just a dream.

Nah.  Couldn't be.  My little girl will say it again.  When she feels like it.

After hearing that she would no longer need to see the hematologist because her platelet levels were normal, and the pediatrician would just need to monitor her for the next year, I knew we were also going to get the stamp of excellence from the cardiologist.  We had gotten through our morning appointment unscathed.  Yes!

Waiting room shenanigans

Yesterday was a long day.  It started at 8 am with baby baths, followed by my mom coming to town early to remove a splinter from my oldest daughter's foot (I tried but because I'm too stubborn to buy reading glasses I just couldn't see that splinter).  On Clara's doctor visit days I usually ask my mom to come assist with Lxkas. Plus, I appreciate having an extra set of ears in circumstances where the doctors start tossing medical jargon at me and I can't catch it all by myself.

As was the case during our afternoon appointment when the cardiologist was talking about TR levels.  I stopped her to ask what the acronym was and as soon as it started spilling out of her mouth I shook my head and asked her to carry on.

The gist of her medical speak was that the pressure levels in Clara's right lung are still high.  Because they have been consistently high 3 times now there is a good chance she is developing pulmonary hypertension.

In a few weeks Clara is scheduled to have a heart catheterization, in which they will insert a catheter through a leg vein and run it to her heart.  Once in place, the doctor will get pressure readings and be able to make a determination as to what is causing the blood pressure in her lung to be high. It could be too much blood swishing around in her chamber, which would be the best news, or it could be the start of pulmonary hypertension, which would be okay news because at that stage it would still be reversible.  Worse case scenario would be she has developed a later stage of pulmonary hypertension which can be somewhat managed with medications and lifestyle changes, but leads to a shortened lifespan.  The cardiologist's hunch is the beginning stage.

 If the doctor can, he will patch the hole in her heart with an umbrella type patch since the catheter will already be in place.  This would require an overnight stay.  If he can't make the patch work, which I would guess might be due to her size and age (?) then the doctors will want to schedule open heart surgery to close her ASD and end the blood pressure problem so that she doesn't develop more serious issues.

I'm all for closing the ASD, but the thought of Clara being put under with anesthesia is haunting me.  She's 13 pounds, for goodness sake!  And she's... my baby.  But, we don't have a choice, and I am thankful that a medical team has found and been monitoring this issue so that my sweet girl will be healed.  

Clara's provider was here today and I'm glad because I needed to talk to someone who understands.  She has become my sounding board and adviser.  She gave me some pointers to bring up with the doctor during our pre-admission meeting and she let me know she was here for me.  It means a lot to me.  And I know she's scared with me.  She lost her son who also had Down syndrome when he was 10 due to a reaction to Demerol.   I don't know how she holds herself together so well when she sees other families going through this.  She is a strong woman.

She also made Clara some leg bands to keep her legs from flailing every way outward they can.  They limit her limberty (yes, I made that up.  Her liberty to be limber) so she can develop her muscles the proper way.  

I'm still digesting yesterday.  I feel like I need a big scream from a high mountain.  However, there are no mountains in Oklahoma.  I just know there is build-up inside me that continues to amass and somehow it will find a way out prior to the morning of her heart cath.  

leg band

Clara turned 6 months old on the 8th of this month.  I wanted to write an update that day, and then when the day got away from me I thought I would write it the following day.  Now it's two weeks later.  Where are my priorities?

Well, now the little miss is 6 and a half months old.  I don't have any shocking revelations, but since she is at her half year mark I feel I should say something.  A toast, perhaps?

She had her six month check-up with the regular pediatrician on her half birthday.  He was happy to see her looking so healthy and putting on weight, though she is still just at the 5th percentile in growth for babies her age.  I think to make me feel better, though I didn't feel bad, the doctor printed a Down syndrome growth chart (finally) that he will also use to track her growth.  On that chart she makes it to the 50% mark, meaning her size and weight are pretty average for a baby with Down syndrome.

He also noted that developmentally she is on par with babies who are four months old.  When I told Clara's provider (state provided therapist), she remarked that she thought Clara was more like five months.  I'll take either because it doesn't really matter to me.  And being that it seemed Clara slept the first three months of her life away, I think she's doing great.

Clara holds her head well now.  She has great control.  On her tummy she lifts her upper body with her arms to have a look around.  I don't know why, but I didn't feel like we were ever going to get to this point.  But, I also wasn't as aggressive as I'm sure her provider would have liked for me to be, for no other reason than that Clara hated tummy time.  Now, she can intentionally roll over (she's been rolling over for a while without realizing it) and seems to like tummy time a lot more because she chooses to do it, not because Mommy tries to make her do it.  Because of the control she has gained I also give her a lot more floor time with her toys, which she seems to enjoy.  She is also handling her toys in her hands with more intent, and bringing them to her mouth to chew.  I have watched Clara work to get to this point.  It's like she always knew she could do it, but she just couldn't get her muscles to cooperate with her.  I think her mind is further developed than the rest of her body will allow her to be.

Her favorite toys are still her footsies.  She brings them up and handles them and chews on them, and coos contently all the while.  I like her footsie time because it's her time to herself--like, Mommy doesn't have to hold her time.

She's also made gains socially.  At her visit the doctor asked me if she was only making vowel sounds or if she was starting to sound consonants, too.  I hadn't even thought about this as being a marker for development.  And I realized that she doesn't sound consonants, but only vowels.  However, she does yell at me to get a reaction.  It's the cutest darn thing.  It started accidentally a couple of weeks back.  She made a darling squeal sound, and I acted surprised and jumped a little.  She made the squeal again to see if I would react the same, and I did.  And so now, often when I hold her in my lap facing me we play her game.  I love it, and I think she knows it because she will smile between the squeals.

She has started actually laughing, too.  Her laughs are usually a coughing sound and I don't know why this is, but it is.  A few days ago I found out she was ticklish under her arms and for the first time real laughs came from within her.

And at the suggestion of her provider Clara now has a bumbo seat.  She sits great in it, and because of this she started eating solids this past week.  The doctor had said there was no rush because of her development being at four months, but I think we were ready.  Clara loves peas and sweet potatoes; green beans and squash not so much.

I'm also giving her the bottle more than the breast now.  I haven't set a date, but sometime in the near future I will completely ween her, which makes me sad.   As with Lxkas, I'm sure it will hurt me more than it does her.  I see an "ode to breastfeeding" entry coming up soon.

Next week we have a couple of doctors to visit who we haven't seen in a while.  She will visit the hematologist to check her platelet levels, which until May had been low, but then in May they were too high, which the doctor explained was probably just them overcompensating after having been low.  I'm not sure which hematologist we will see since Clara's regular hematologist took a job at St. Jude's Children's Hospital, which is a bummer because she was the sweetest doctor we've had.  But, I have to be happy for her that she gets to go to a renowned hospital because she is that good.

The same day as the hematologist we will see my favorite doctor (not), the cardiologist.  Last time we saw her she scared me with the whole pulmonary hypertension thing.  I think I wrote about that.  Clara appears to be so healthy that if she tries to scare me this time with some crap I don't understand I might have to give her a piece of my mind.

And lastly, some happy news.  The family, and I mean grandmothers, grandpa, aunts, siblings, myself and Cxdy, will be participating in the 2013 Buddy Walk to raise money for the National Down Syndrome Association as well as our local chapter.  I'm really excited to be taking part in this.  I plan to design t-shirts for our team and we are thinking after the walk we will have a cookout for everyone who participates on Clara's behalf.  I hope we have good participation and this can become an annual event for everyone who gets involved.

So, there is the rundown on my little big girl. I can't believe we are half way to a year.  It goes by so fast, yet it seems like she's always been part of the family.  I know.  It makes no sense.  But what does make sense is that the love that I have for her is immeasurable and I'm so glad she found her way into our lives.  I was telling her grandmother the other day that when I was pregnant and crying myself to sleep after finding out she had Ds, if only I could have seen 6 months into the future I would have been smiling myself to sleep instead.  Silly Mommy!

Anyway, cheers to my Clara, a most amazing and curious little creature.

 

 

Mornings have become a ritualistic part of the day for me.  Because we live in a 3 bedroom home both babies bunk with Cxdy and I.  Lxkas has a toddler bed and Clara sleeps in her crib.  However, some time during the night, one or both of them usually ends up sleeping with us.  Clara is starting to sleep through the night, but occasionally she'll still want an early morning feeding.  Lxkas sometimes wakes up scared and makes his way up the bed on his daddy's side, cruising over daddy in four wheel drive and settling himself in between us.  If they are crowding us (I can't believe I said "if"), once they have fallen back asleep usually one of us manages to hold our eyes open and move our bodies upright long enough to put them back in their own beds.  And then, on weekdays, Cxdy drags himself out of bed at about 6:15 am to prepare himself for work.  Half an hour later, he is gone.  Usually Clara will wake again for a feeding shortly after, so she comes back to bed with me.  We cuddle in the center.  A short time later, perhaps hearing our stirs, Lxkas comes climbing in to join us.  Sometimes he falls back asleep; sometimes he becomes active enough to convince us it's time to get up.

This might annoy most people who need that peaceful nights sleep without interruption, but I have become accustomed to it, and honestly, I just really don't mind.  I don't even mind sharing our room--for now--especially on mornings like this morning.

This morning, I had Clara on my left and she and I were facing each other.  Lxkas crawled into bed as usual and granted me a wish by falling back to sleep, his front side to my back side.  So, I had two babies wedged pretty tightly into me and it was the most comforting feeling I think I've ever experienced in 41 years.  His body was soft and warm against me, like a down pillow fresh out of the dryer; and even though I couldn't move an 1/8 of an inch I found myself smiling.  I don't know how he did it, but he had found the perfect position.  When Clara finished nursing she looked up at my face softly cooing and grinning like a shy child meeting a friend for the first time.  Love cannot describe how much I enjoy her smiles, but especially the ones she was blessing me with this morning.

It was a pleasant morning and it made getting out of bed all the more pleasant.  I wiggled free of the babies, kissed and tickled Lxkas until he was smiling and waking, then went about getting dressed for the day.

We all got our smiles in this morning.  I must say, I'm a lucky old momma.

Clara contently wiggling around in her bed while I ready myself for the day.

Over the past two months I've managed to get roughly 30 cover letters written for jobs I feel I'm qualified.  Judging by the response I've received in return I am the only person that feels I am qualified.  Cover letters are a menace.  You don't know who is going to be on the other end reading so the tone of your letter could be a huge hit or a disastrous miss.  I have been many personalities in cover letters.  I've been humorous, business-serious, less than enthusiastic and over eager.  I get less than enthusiastic when I'm hard on myself, knowing my letter is going to be unanswered anyway.

Writing a cover letter is not an easy task.  And you can't just have a well-written generic letter saved  for quick send-off.  Different jobs call for different skills and the letter needs to highlight those skills.  I got skills.  Tell me what you want, I'll tell you what I got.  Ugh.

And then the cover letter gets sent, and you think of things you should have said in addition, or you regret the tone you chose, or you wonder, "Did I remember to change the address from the last company I wrote?"  A cover letter is never good enough.  I don't know why the resume can't speak for itself.  We all know anyone can say anything in a letter and it's not a real reflection of the personality of the writer.  Don't we all know that?

But I'll admit my cover letters do tend to be hurried, just like my blog updates.  My blog posts could be better written, but they're usually written while Clara is napping and Lxkas is watching Thomas.  To have these two events occur at the same time is pure luck.  Right now Thomas and Toby are on an adventure but Clara is stirring in her bed.  I'm on limited time here.

There is one project I'm working on in which I'm taking all the time in the world.  I'm writing a story that started developing in my head last summer.  A complete story is sitting in my mind waiting to come out on this computer screen.  I wrote the first chapter and sent it to a couple of good friends of mine, because I told myself that if they said it sucked I wasn't going to waste any more of my precious time writing it.

Well, I got mixed reviews.  Friend 1 flat out told me it was unoriginal and my style sucked.  I appreciated her honesty and told Friend 2 not to bother critiquing it because I was going to find better things to do with creative juices.  Well, turns out Friend 2 sees something promising in my story because she has inspired me to keep writing.  She gave me a couple of suggestions, I did some revisions, and we feel the story is on its way.  I'm two chapters in now.

It's a story about culture and the complex relationships of women.  My main character struggles with living in the present because of the past and her grandmother is a huge part of this struggle.  Also, she's growing up in a time of rapid change, where roles of the sexes are changing, the family structure is changing and the environment in which they live is changing.  In case you haven't guessed yet, my character is Cherokee, and she doesn't know it yet, but she's going to be walking the Trail of Tears.

I don't know what I'm going to do with the story when I finish it but I do feel I want to finish it just so I can say I did.  If it does suck completely to hell and back, at least I tried.  If it's okay and mildly entertaining, I'll upload it to the internet so maybe a couple of people will take the time to read it if they like.  If it's better than mediocre, or if it's good, maybe I can sell it and make a little money.  I know the third option isn't very likely, so let's hope for #2 because I don't like to suck.

So every now and then I'll catch a good lengthy break where I can get a few pages churned out.  At the rate I'm going we may see a finished product before the apocalypse.  That's a big maybe.

Sometimes it's hard to come up with titles for these updates and so I wait until I've finished before I settle on one.  For this post, the first sentence I typed was the title.

I'm holding Clara and I'm looking out the window to the front yard that is wildly getting out of control.  Wildly.  As if being out of control isn't wild enough.  We had a storm the other night that took down huge parts of our beautiful front yard tree; the tree that is the centerpiece of the yard and gives the house a finished and balanced appearance.  The tree is now out of balance.  But this post isn't about balance or landscaping or storms.

I'm holding Clara and Lxkas is playing or watching tv or digging silverware out of the silverware drawer. Who knows. That little man is always busy doing something and it's usually what he shouldn't be doing.  Not only is there a tree laying on the front lawn, but the flower bed that Cxdy had cleared out a couple of months ago is becoming overgrown with weeds.  I remember back to when I said:  "I don't need the best yard in the neighborhood, but I don't want the worst."  I think we have one of the worst.

And I'm holding Clara, because if I put her down she will fuss and work up into a huge cry.  The yard is calling me, but I have created my own prison. It's a baby prison.  Natural law states I cannot go straighten a mosquito-ridden, overgrown lawn in 100 degree F weather leaving two babies unattended.  I hope you are up to date on your natural laws.

Do you remember two posts back when I was ecstatic about staying home with my little lovies?  It was the best day on earth.  Streamers were falling from the sky.  I think I may have left that part out, but it happened.  It was a glorious event, that realization.

And now, it is soaking into the brain, penetrating this thick skull of mine and soaking deeper and deeper.

It's real.

What do I do with myself?  And them?  I'm in lock-down.  How do you have fun in lock-down?  I have to reinvent the wheel because I wasn't planning on this.

Realistically, I've been doing this for 6 months already, but always with the intention of going back to work and actively seeking employment for the last couple of months.  Now, I need to figure things out because I can't continue this on the same course.  There has got to be more.

I know how to be a mom--trust me.  I've done this.  I have a 22 year old (on Saturday he's 22).  He made it.  He survived my momness.  I've just never been a stay-at-home mom.  Those women were always a strange breed to me.  Now?  I have to learn to be one of them.

I forgot to mention in that post a couple of updates back that Cxdy had also taken a part-time job.  We wouldn't be able to play this gig if he hadn't.  I think that's part of the reason this is sinking in hard and fast.  Every night this week he has left for his regular job at 6:30 am and returned from his part-time job at 10:15 pm (orientation week;  it won't always be like this).  I've not had a break.  I realize now how big of a help that man is!

I can't become one of those super moms that blogs all the time because my little demons... err... angels won't allow it.  I can't become Suzy-expert-homemaker because I only have one arm (the baby would have to surgically be removed) and we can't take day trips to museums and kiddy parks (wouldn't that be nice?) because we have declared ourselves poor.

Painting?  Out.  Babies don't allow that one either.

Eh, I'll figure out something.  I usually do.

So, crafts, anyone?

Perhaps sometimes my entries all start to sound like odes to Clara, but I can't help it.  That girl is so darned beautiful.  Or maybe it's partly because I know everything is a little more difficult for her.  Some things are a lot more difficult.  The things she does, when she does them, just... amaze me.

One thing that has struck me since becoming a part of the extra chromosome crowd is that these children aren't dumb.  A lot of people, even some parents, believe these children really have some sort of brain damage.  Since being around Clara and other people's children I have actually thought this to be very far from the truth.  I see intelligence in their eyes.  These children think, and they think deeper than we assume.

Right now Clara is trying to reach for toys.  Sometimes she can grab them.  Other times, I see the frustration on her face when she wants to make her arms go forward for that toy, but they don't.  She knows they should, but it can be a difficult struggle.  It's frustrating to me to see her fight so hard.  That's why when she does tackle something, no matter how small, it becomes huge to us.

A couple of weeks ago, Cxdy and I had the fortunate experience of sitting in on a webinar hosted by D.A.D.S.  There were several speakers, and two of them were researchers from the University of Colorado.  They explained where research is today, what we can maybe expect in the future and the link between Alzheimer's and Down syndrome.  I walked away with a bit of a better understanding of what happens when the extra chromosome 21 is created.  In my poor laymen's term, basically, genes stick in places where they don't belong and the communication in the body systems gets blocked and, as I would describe it, fuzzy.  That's pretty simple, but of course, it's much more complex.  But, I'm not a scientist ("Really?!" you ask!). I wish I had the slide that showed these examples.

Then this last week, news comes out that researchers have found a way to suppress duplication of chromosomes.  This is huge.

If the extra chromosome isn't created, then there won't be extra genes sticking in places where they don't belong.  If those extra genes aren't sticking in places they don't belong, Clara can easily have her brain tell her arms to grab that toy instead of trying to get that message through all the muddle that exists there now.

This is very exciting.  I think my little girl is who she is regardless.  If we are able to give her gene therapy one day, it's not going to change who she is.  It's not going to change her beautiful smile.  But it is going to help bring her out of the haze that is trisomy 21.  I welcome that.  I'm pretty sure she welcomes that, too.

It's not going to change the way she looks, or the hole in her heart, because her nasal bone and heart have already missed that development in the womb, but that doesn't matter to me.  She's beautiful regardless, and the hole in her heart can be fixed.  However, for other children in the future, perhaps even the birth defects can be completely avoided.

One day, gene therapy or not, Clara is going to proudly declare that she has an extra chromosome that has helped to make her the unique person she is.

Being a part of this extra chromosome crowd is very exciting.  I once thought I never wanted to be here.  Now, I don't want to leave.

I'm sure there are friends, family and acquaintances who would state with certainty that I screwed up big when I left a good job permanently rather than take 6 weeks maternity leave.  After all, it was my job that has afforded my family an easy lifestyle in which we knew the bills would be paid, we could maintain a roof over our heads, food would be on the table and we could take a nice vacation now and then.

As further proof that I screwed up, I am finding it difficult to find another job in that pay grade, let alone a lower pay grade.  I can't even get called for jobs that don't require a degree.  I've applied for over 50 jobs in the past month, and I've been called for two interviews.  I cancelled one.  It was too similar to the job I just left.  I don't want to live my work anymore.  I want to work and then come home and live.

And even further proof I screwed up?  Daycare in this area where we live is not affordable with two babies.  The job I left was in a city where daycare is more than half the price of what I will end up paying here.  If I accept a job, it has to be at a certain starting salary, because with daycare expenses we may as well be paying a full-time employee $10 an hour.  It's the same cost.  If I took a starter job at $11 an hour, I would actually be bringing home $1 an hour.  Before taxes.

So, did I screw up?  Everyone might think so, but I don't think so.

We've weighed this out and we've decided that I will keep looking for a job and if I receive an offer at a certain minimum salary I will accept it; but, until then, I'm staying home with the babies and applying for disability for Clara.  I think that added income will keep us out of the red.  We may come out flat (we hope), but we will manage (we hope).  And as long as I get to stay home with these two wonderful creatures that keep my own my toes, Momma's happy.  This is what I want.  This is what I have desperately wanted since I found out last November that Clara would be born with Down syndrome.

It's slightly scary.  But, if I don't get called for interviews I'm not going to worry about it anymore.  Daddy thinks we can do this.  So do I.

Welcome me to being poor.  But happy.  Go me.

As I've stated before, I don't get out of the house very often during the day with the littles, and before I do, I always have to have a plan of how I'm going to keep the two of them in tow at each of our various stops.  I usually end up deciding it's best to wait for Daddy to get home so I have help.  But, today I needed to visit the post office to mail packages so I went ahead and tossed a couple of other errands into the mix.  To keep the bigger little good, there was the promise of a new toy at our final destination--the world's greatest toy store.

The littles keep a piggy bank where Daddy and I toss our spare change.  It was once solely Lxkas's piggy, but it's only fair that he share now that he has a little sister.  Usually, by the end of two months there will be well over $10 in there, and that's when it's time to visit the Coin Star machine in our Neighborhood Market so he and sissy can cash out for a new something special.  That something special is usually a toy from the Thomas and Friends franchise for Lxkas and something Clara can chew on.  And yes, Lxkas's take of the loot is usually a bit more than Clara's, but her needs in that department aren't yet as great as his, so for now I think we're okay.  Today was no different.  

Lxkas proudly carried his cup of change into the store while I carried Clara.  He didn't even threaten to run away, which was a relief because as we walked I kept envisioning the nightmare scenario where I'm trying to pick pennies, nickels, dimes and quarters off the floor while I'm juggling a baby in one arm and trying to catch a 2-year-old with the other.  I would be one arm short and the whole scene would be quite embarrassing. 

When the Coin Star finished counting we had $13.84.  I added $4 in cash that was in his piggy and their total was just under $18.

Upon our arrival at the toy store  he was antsy to get out of the car and he knew right where to go.  In this particular aisle there is a large train table set up with several examples of Thomas's friends who have what looks like miles of track to explore on.  In fact, we got the idea for Lxkas's much smaller train table from this one.  His train table was a big hit when he received it on his 2nd birthday last month.  However, as of late it's been a bit disheveled and neglected with track strewn where ever and "choo-choos" (as he calls them, though he's starting to call them engines) that have wandered far from home to different parts of the living room.

He was so excited about adding to his collection that he didn't allow Bash (the new engine's name) to be bagged at check-out, and as soon as I had snapped him in to his car seat he was tearing through the packaging while I fastened Clara.  When we walked into the house he saw his train table wasn't good enough to welcome its newest member so he directed me in helping him put his track back together and collect all the engines we could find.  

Once again the train table, the track and the engines are as exciting as they were the day he first received them.  The train table sits immaculate with engines lined up and awaiting their next adventure with the bigger of the littles--until the coming weeks when one by one they slowly adventure away to be forgotten under a couch or down a vent.  He will play with them, but never will they be this exciting again.

Until, in a couple of months, when I'm almost positive a new engine will join the ranks and they will all get together for another welcoming party and to be special again.