2nd week of Advent

--- 1 ---

Many many things of note have happened this week. Let us begin with Sunday, when our dear friends let us keep 5 out of 6 of their children. Two of the kids are Paul's age range, are boys and give him someone to wrestle and box. It is lovely when I am not the one being punched and the person who is thinks it's a fun game. There also is a two year old boy, and there are twins, all of whom are perfect and wonderful. Even though that is the case, I still can't remember why I thought it was a good idea to put together bookshelves that day. Needless to say, the shelves are not done.

--- 2 ---

Scott's mom came into town on Monday to celebrate Paul's 4th birthday (which was on Tuesday, but that was a busy enough day!) True story, I can't remember what we ate for dinner. Oh, wait, pot roast. Scott took the day off work because I'd been grappling with a virus, and we had a really lovely day. I made grain-free pumpkin bread with a pumpkin spice whipped cream frosting. All was delicious and well received by the kids. 

--- 3 ---

Tuesday things got crazy. Once again, I hardly remember the morning, but I do know I had quite a few things to do. That said, I was able to drop Mariana off with our friends, the ones whose children came to our house, and take Paul and some buddies to Wreck-it Ralph. Unfortunately one of his buddies got the business from his mom for some potty humor right before we left, and Wreck-it Ralph has quite a bit of that. Oops.

A lot of people gave me looks as though I was a martyr when I told them my plans to take four young boys to the movies. I really thought they were weird. While the boys were really perfect during the movie, I have to say I've never understood the term "herding cats" so well in my life. These boys just took off the minute they were out of the car. Luckily I parked near the sidewalk, so there was no parking lot safety issues. But holy cow, girls and boys are totally different.

That night was a normal night, only Paul got to snuff the Advent candles -it wasn't his turn- and he had a few gifts to open.

--- 4 ---

Wednesday may take a while. Mae had her Developmental specialist meeting and met with her new OT. Luckily it was at our house. We have had it made clear to us that keep Mae slightly quarantined is our primary obligation this winter. I will get into that later.

The basic run down of Mae's assessment is that she is doing very well. Her gross motor is on target, though she is low tone in her upper body, it is only partial. We must keep working on crawling, but her gross motor is good. Her fine motor is also on target, but we must work on her pincer grasp, and her sign language. Most of the feedback was to keep up our work with her because she is close to on target.

--- 5 ---

Mae's 9 month check up was Thursday. This is where I lose it. She is 15lbs, so she gained 11oz in a month. Yay! The pediatrician did say she wasn't too freaked out by that plateau earlier because it looks like a normal curve. Most babies plateau around 8 months because they are more active, and since our OT has upped a bit, the doc wasn't freaked out now that she's gaining again.

During her appointment I explained that on Wednesday Mae had begun to say Ma-ma. Two syllables instead of her normal, "Ma-ma-ma-ma-ma..." Doc lit up and began telling me this is a 12 month skill. I also explained that she is signing for milk and starting to point. Again Doc became almost giddy. Pointing is a 12 month skill. Also, early communication skills are directly linked to IQ. This doesn't mean if your baby doesn't talk s/he will have a low IQ, because most babies communicate well before they talk. But for Mariana, for obvious reasons, this is a huge deal.

I am scared to be happy. Predicting the future is not my favorite game. I am happy she is progressing and beginning clear communication, but there are a million and one What-ifs. I do not want to put too much into this report lest I get caught up in fooling myself that Mae is "just fine". She needs our help with everything, we can't leave her to develop on her own. That said, it is lovely to have all of our hard work pay off in the form of impressing the professionals

--- 6 ---

GI update: Clear x-ray! No indication of a physiological reason for her issues, and prune juice is keeping things moving. HURRAY FOR PRUNE JUICE!

Our ped told us that the flu season is practically killing her practice with overtime. She was very firm about keeping Mariana protected, which reiterated what the GI doctor had said. We are to stay away from malls (no Santa photo!) and keep a strict hygiene routine. We cannot travel, we cannot host travelers. Boo hiss.

--- 7 ---

Now the REALLYbad news. So all three pros (Doc, Developmental specialist, OT) stated that children with Down syndrome tend to have a stubborn streak that beats all. This has been witness by me in Mariana's refusal to do OT many times, and her refusal to sign what she can. And it is clear refusal, not confusion. We are facing some bedtime issues with this one, and my tenderness toward her condition does her no favors. Pray I get through this. I know she'll be fine, but my nerves are frayed as it is. And to think, I'm the militant mama in my family!

For more Quick Takes, visit Conversion Diary!

<

--- 1 ---

BUSY LIFE! I can't tell you how many things we have going on, so here is a fast rundown. You no like? Sorry! Advent is a time of penance.

--- 2 ---

Mae will be visiting with a developmental specialist once a week. She's 9 months now, and we really need to stay on top of oral-motor, gross motor, and fine motor skills.

--- 3 ---

Mariana had her GI test. Waiting upon results, praying there will be no biopsy needed. I remember that time when I swore my life as a mom wouldn't revolve around poop. Once again, God loves me enough to constantly teach me humility.

--- 4 ---

Diet changes have revolutionized our family. Molly is doing amazingly well. We've even cut her vitamin B supplement out with no ill effects. This is the greatest blessing to our family, even if our grocery bill is obscene. Praise God!

--- 5 ---

Speaking of dietary changes, have you tried coconut oil yet? It really is a wonderful product, from skincare to medicinal purposes to a yummy way to cook shrimp. And before you knock using it on your face, try it. AMAZING

--- 6 ---

Christmas is amazing. I love Christmas. But advent is my favorite church season, I think. I love the darkness of it, with the small light from the advent wreath. Advent doesn't get enough credit. Listen to this and tell me I'm wrong.

--- 7 ---

Alright, I'm off to shop. Pray Mariana doesn't lick anything gross. I think she's teething. 

For more Quick Takes, visit Conversion Diary!

The R Word Remix

I had a killer post about Thanksgiving and gratitude, but I'm going to put that on hold to respond to a comment on my first "r" word post. Here is the comment:

I do agree with you, however if someone like me uses the word as a put down, it is to say like that was a retarded statement i,e that is dumb. It doesn't reflect Down's syndrome children and their beauty in the least. Unless,there is something I'm not seeing. This society has become, because of the liberal agenda, too sensitive over semantics too. You must admit that. Hell, I am a blond and how many dumb blond jokes are out there? What if someone said a dumb blond joke in the presence of your beautiful blond child, would you take offense to that, as well? Just wondering. Also, a lot of Catholics take offense to the word asshole. At least putting it in written form. If it is spoken, accidentally in anger, that is one thing, but to put it out in the blogosphere is permanent and you want your Catholic light to shine and we have to realize what our written language kind of dims that light. I guess the same could be said about writing the word retard too. Just something for us all to ponder. You have a beautiful little girl, btw.

First of all, thank you. She is beautiful, and funny, and sweet and as jerky as every other baby with her biting and grinning when I tell her no. So, thanks.

On to what I think is the main thrust of your comment, which is that people are too sensitive about using certain descriptive words as derogatory (blond, retarded, asshole). Most of the time I get very eye-rolly at the idea of getting offended by something like a blond joke. A joke is a joke, we all get that. It is meant to be playful, not hurtful, so intention does matter. Also, most people can defend themselves, and that is a huge factor as to how appropriate something is. I don't like jokes about the sacred because I hold some things sacred. Hair color is not one of them.

However, in your example of using retarded to describe someone's statement as dumb, well, that is offensive. Why? Because the word retarded means something. My daughter's geneticist told us she would likely be mentally and physically retarded. That word was used to describe something about her. When my daughter grows up and hears that word used as a put down, she will associate that word with her deficiencies. She also likely won't be able to process a response fast enough to explain the offense. So, my daughter, who is a kind and cheerful girl, will be hearing people using a word used in her diagnosis, as something to put others down. And she will be unable to defend herself. And that is terrible.

Retarded doesn't mean dumb. It means slowed. My daughter's development will be retarded by Down syndrome. Her speech will probably be retarded by Down syndrome. Her cognition will be retarded by Down syndrome. What she won't be is dumb or ignorant. She'll be retarded. And no one should hurt her by using that description to call someone else a name. If someone were to do that in front of me I would defend her against that kind of ignorant treatment. If the person is a jerk, I'll tell her that person has terrible manners. Because those of us who can should protect the weak. 

As for the use of "asshole", yes, you are right, that is not the Light of Christ type word. It is vulgar, and I used that word to describe the vulgar people who defend the use of the word "retard" because they don't mean it offensively to those with Down syndrome. Except it is and all the semantics in the world will not change that unless we can no longer use the word for its intended purpose. Which circles back to my original point that I do not want assholes determining the lexicon.

To sum up, I don't think the words "retard or retarded" should be banned. I think anyone who uses those words as a put down are either ignorant, or complete jerks. My faith dictates that I help instruct the ignorant and love the jerks. I can do that, but I might accidentally call a jerk an asshole on occasion. Please forgive my vulgar mama bear moments.

Post Election Awesome

Lands, I'm tired. Refraining from being a petulant sore loser is EXHAUSTING. I tried to go to bed before the results, but I tossed and turned all night wondering. At 4 I finally checked. I really really wanted to behave like the little boy in my daughter's class who said he would would break Mitt Romney's arms if he won. (No, I don't think his parents are to blame for that one. I have a 3-year-old boy who recently told me how I was the "billain" and Daddy kicked me in the face and stuffed me in a closet-none of those things have ever happened-so yeah, boys and stuff.) I did not tell her to tell that little boy that if the president has a heart attack and dies JOE BIDEN IS OUR PRESIDENT, so there!!!infinity! But I did tell her to pray that Barack Obama is a good president and put it in God's hands. Which is what I would have said if "Mitch Romidey" won. Why couldn't my kids remember his name anyway? WAS THAT AN OMEN?

Yelch, I'm punchy today.

On to more pleasant subjects, at least more pleasant for half of the voters; Mariana. She slept like a boss last night. Slept like she was getting paid per minute. A dear friend of the family, Keith, stopped by on his way to the OSU basketball Carrier Classic and spent the night last night. He came in time for dinner, so he was there with our pastor, Fr. John, who ate dinner with us and blessed our new home. Fr. had offered to come and bless the house when he heard we were moving, so that was a very nice thing to share with Keith. Father John blessed the back yard and every room saying a blessing for each. He also blessed our front porch and our doorway, our closets, our stairs, the windows and cars. If you've never had your home blessed, I highly recommend it. The kids really appreciated it, especially the prayers for safety. Anyway, Mariana went to bed shortly after Father arrived and then slept as he went into my (embarrassingly messy) closet to bless it. She slept until 6:30 this morning, and she is napping now. God is so GOOD!

Today's work is more laundry thanks to a midnight accident, gift purchasing and popping by the old digs to grab more stuff. The never-ending protracted move continues. We are headed to Disney this weekend, which is going to be epic. We are staying at the Art of Animation resort, Scott is running the half marathon at 10 p.m., which is crazy, and many of his side of the family will be there to hold babies and wrangle stray children. I believe the park we have chosen to explore is Hollywood Studios, and I pray that no one is crabby that we aren't doing "something else". There is going to be a lecture, or several, on gratitude and the limits of time and being gracious in a big group. I'm considering bringing a kid-leash to threaten them with if anyone gets out of hand.

I should mention that Molly voted for Mr. "I" in her class election and he won! So, at least one of our family members has the sweet taste of victory this week.

Crap-Gotta go, see below....

And this is what happens when you ignore your 3 year old and you have crappy builder paint.

October- The Revaluation

October turned out to be the shortest and longest month of the year so far. The first part, waiting to close on the house, was agonizingly long. The last part, and our protracted and never-ending move has been swift and busy as all get out. I don't have time to write this post, but I always have time to shirk my responsibilities.

Mariana is sleeping beautifully at the new digs, which so far has been my gigantic closet that has no excuse for being so large. I painted her crib a gorgeous shade of purple, but we've had many guests (Hooray!), and I'd like to wait until it slows down to screw up her sleeping arrangements. My mom pointed out that my closet is very dark, which may account for her ability to nap better. Blackout shades are in the works!

Why did no one inform me that when you buy a house you might as well withdraw all of your money and dump it on the front lawn? The more you know!

Because I am starting to feel guilty for the unfolded pile of laundry that has grown eyes and begun to stare at me with judgement and disappointment, allow a list of cool and amazing things that are going on in Mariana's kingdom:

1. Sitting up!!!!!! This baby can sit up for 5 whole seconds before leaning too far one way and crashing onto her face. I have no idea how she manages to always fall on her face no matter which direction she falls. I call it a gift.
2. EATING ALL THE THINGS AND FACES AND STUFFS- Oh yes she does. Rutabaga, peach and spinach mixture? Delicious! Daddy's scratchy chin? Fabulous! Paul's runny nose? That's gooood eatin'! She both fascinates and grosses me out.
3. Her GI appointment is set for 11/20. Pray, please. Babies shouldn't be in pain, especially my baby.
4. Scott's mom, brother and grandparents have all visited. My parents were here too. I love having a house I feel the guests can get adequate rest even though my loud family wakes up with the sun.
5. Our pastor is coming to bless the new house. I hope this keeps the poisonous snakes in the preserve behind us from eating my babies and husband. And me. For sure me. Oh, and the dog. St. Francis, get busy! (Please and Thank you.)
6. Mae also had an OT appointment at our home. In other words, I do not have to drag her to the snot smeared pediatric PT/OT office for her check up during flu/whooping cough season.  
7. I voted today. I made an informed decision and followed through with casting my vote. I don't feel 100% thrilled with my choices, but I'm at peace that I tried to make the best decision I could. I pray we all did.

Now, off to get the laundry back in order-ish.

7 Quick Takes

--- 1 ---

I hate "Whatever Awareness", or rather I did. I never saw the point. I thought, "How about forgoing awareness and putting that money into actual aid to those suffering?" Now I'm on the awareness bandwagon. Because people need to know you won't die from having a baby with Down syndrome and that making decisions out of fear is really just a good way to cheat yourself from a fulfilling life. And that's just Down syndrome. There are a lot of things we all need to grab our attention. So, be aware, be very aware!

--- 2 ---

Lately I've really taken account of my appearance. It really started when I was describing to my kids about the connection between the body and the soul. And I realized, while there is a time to let vanity go, there is also the need to retain a sense of self and glory in your outward appearance. If you are ashamed of your appearance you are not going to be fully yourself. So I am taking small steps to reclaim my appearance. My hair appointment is next week. It seems like vanity, but it is deeper than that. I must feel whole to be holy, and part of that is feeling worthy of time and attention. Lately everything else comes first, and that's okay. It just can't last. And let's be real, I'm not shooting for gorgeous, just pleasant.

--- 3 ---

BEGIN RANT
We live in an increasingly disordered world and I'm flipping tired of it. Weekends of football on T.V. all day long are no longer the norm around here. For the last 5 years we've needed, yes needed, TiVo in order to watch anything on television, including football during the day. Why? Because executives seem to think it appropriate to air commercials for horror movies during the day, during "family viewing". This, my friends, is utterly disrespectful.

I'm so disgusted by the lack of respect for children in our culture. Hey, you want to make a horror movie? Great! If it's a good story I might go see it. You want to have a strip club? Well, I don't like it, but I'm not going to march outside your doors either. You want to advertise your beer during the day? Okay, I'll probably buy it with or without your ad, but whatevs. You want to throw gore and breasts in my kids' faces to get my business? Wrong answer.

It's not just ads, of course, though there is a local billboard in particular that I'd like to beat with a 9 iron. It's the whole "Teach your Baby to Read" mentality that disrespects child development. Mariana could roll over at two weeks, but she did it incorrectly, and I had to go back and show her the "right way" so that her development was ordered toward her benefit and not detrimental. There is an order to life and to development that needs to be respected, but I see that in our pursuit of what we as adults want, we leave behind what kids need.

Life is like math, kids need to know how to count and what a number is before they can be taught addition. What sense does it make to throw images of lust and horror at our kids when they are still learning the ins and outs of basic life? Does no one recall how wonderful it is to enjoy the box before we even remember a toy came inside?

So, stop it you dumb advertisers. I don't want to see any more gore or sex during the weekends. I want to be able to turn on the football game and walk out of the room without having to pause. I want to drive down the highway without 9 foot women baring their goodies. And I have no interest, and never have had an interest in teaching my baby to read!

--- 4 ---

Sorry about that last rant, but not really. Back to my fabulous life with Mae. She is cracking me up/making me crazy. She still won't nap in her bed, but in the exer-saucer/jumper toy? 2 solid hours. Though, in her defense, when she was startled awake by her brother screaming, "MARIANA IS SLEEPING." right by her ear, she was able to bounce herself back to sleep. So, that's something.

--- 5 ---

We are closing on the house next Friday. Fear and loathing about the upcoming move is threatening to take the fun out of this adventure. Also? the punch list. It is no fun to go through your dream house pointing out all the flaws. In my fantasy world I would sit the builder down and explain, "This is my dream house. You have eyes, so you go through and fix all the problems, make it perfect and quit ruining my fun." And then he does it. As I said, my fantasy.

--- 6 ---

This weather is the bomb. It's cool in the morning, warm during the day and cool at night. It smells like fall, but doesn't require many added layers. The children can play outside all day, and then come in smelling like clean air. The windows were open all day yesterday. If I could, I would hug this weather.

--- 7 ---

In honor of DS awareness month, here is a shout-out to my husband. I have received a lot of complements on how well I am doing with Mae's diagnosis. One friend asked, "Don't you feel chosen?" as in, favored by God. I must admit the question bewildered me because while I have always seen our girl as the best gift from heaven, I never ever thought it was because God thought I was anything great. It's more like I saw God as the teacher who sees a kid not living up to his potential and giving him cool extra projects so that he does better all around. Or put another way, God was saying, "You can do better Barbara, here's your chance."

But my husband I see differently. If ever I thought Mariana was a reward for goodness, it would be be because he earned it. Scott's the most unselfish person I've ever met. And while he'd argue with me about that, I have experienced first hand the depth of his unselfishness. So, for Ds awareness, let us never forget those wonderful dads who love their babies to the ends of the earth. Three cheers for them! 

For more Quick Takes, visit Conversion Diary!

Seven Months!

--- 1 ---

My dad's birthday is October 4th. Anyone who reads this should say a prayer for him because that would make him very happy for his birthday. If you happen to be an atheist, do it anyway. It's my dad after all.

---2---

Mariana is seven months today! I know, where does that time go? She is rife with cold symptoms which may or may not be an actual cold. Two days ago it was not. I know this because we were at the doctor for a vaccine and a referral. This is just an adventure with narrow airways and small sinuses. I find the respiratory stuff overwhelming, but I think we are doing okay. In other news, she is also getting closer to sitting up! I wonder if it will be this month. I haven't looked at the developmental charts-it's a sanity thing- but it would be nice to be able to plop her down and take a picture of that fat belly! Other skills include splashing in the bath, which is ADORABLE, and possibly signing "eat". It's more of a hitting herself in the mouth motion, than a proper sign, and she does it all the time, but she also wants to eat all the time and copies me when I sign "eat." Let's just say I wouldn't be surprised if she excels in the communication department given her family. 

--- 3 ---

We are off the GI specialist in a couple weeks. What's tough is that I'm not comfortable sharing every detail of her medical issues because some day she's going to grow up. It's her life, her diagnosis. Much like I allude to Molly's food sensitivities, but don't get into detail, it seems very important I respect that Mariana may not grow up to be an over-sharer like her mother. But, you guys, my baby is crying from pain and I can't help her. Worst parental feeling ever. Pray for us both!

--- 4 ---

Molly is READING!  So, I've been slightly busy which has kept me from spending as much time as I ought on helping Molly with reading. One night, instead of reading to her, I asked her to read to me "Dick and Jane, We Look". Girlfriend is a genius! I give all the credit to her wonderful teacher Ms. P, and her aide, Mrs. S.

Molly has always been this type of kid who puts out there that she's incapable, disinterested and in need of assistance. She's very charming, but seems a bit on the slower side of the curve for her age. I had even considered holding her back a year.  But Molly also is the type that is paying attention and will just pop out a new skill like a boss. Her first words (at 17 months) were "No mine!" clear as a bell. At three, never having worked with her to write her name, I asked her to try, which she completed with a capital "M" and lower case o-l-l-y. She's going to make a great spy some day.

--- 5 ---

The older two are just the best. They are helpful, courteous, and Kate, is funny! She's pulling out all these new phrases that just seem so mature. We were watching the debate - I recorded it - and she busts out with, "The president is saying, 'Uh', a lot like you do when you are distracted." She also said that Romney seems like he knows what he wants to say and that if Obama is open to all ideas then her idea is that he lower taxes so we can give our money to who we want. Scott and I have never talked about our personal taxes with her or in front of her. This she gleaned from our discussion on the differences between those who think government should be the source of charitable giving and those who think those responsibilities should be kept on the local level. But it is hilarious that she expresses any political view at all because she was holding a book from the "Dork Diaries" series the whole time.

C, good heavens, is amazing. She soothes the baby, sweeps the floor and is still as affectionate as always. She's in a delightful phase that I am savoring.

--- 6 ---

P is a boy. He hits, he's messy and he gives the best hugs in the house. He's such a great buddy and a wonderful brother. I'm so glad he's ours!

--- 7 ---

I look terrible. I have zero time to take care of my appearance, and frankly, I'm not so interested. My brows need to be waxed, my hair needs a touch up and could use a trip to a clothing store for myself. There is a part of me that cares, but it's way low on the priority list. I hope by Christmas I care a bit more due to the photos that are bound to be taken. Remember when we were all going to be both beautiful and get all the housework done without having to tell the our kids to clean up the legos?

For more Quick Takes, visit Conversion Diary!