The I-Can't-Believe-You-Call-This-A-Post Quick Takes

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YOU GUYS. I'm a rock star. Just the fact that I have made it through this week + no one was injured *knocks on the woodlike desk* = ROCK STAR HUMAN.
Paul woke up with a fever on Monday. It was a low grade fever, which means I wasn't all that convinced he was very ill until he threw up when I was packing up my loot from Target. Luckily he had one of Mae's Aiden and Anais blankets, so that absorbed most of the ew. He only did this one time, and it was probably due to the fever. My major prejudice in life is the effect fevers have on people. Our oldest runs unusually high fevers, and though she is far more chatty than her usual chatty self and has trippy dreams, she still is very collected about the whole deal. Therefor, when a kid runs a 100.3 degree fever and gets super lethargic and sickly, I think he's milking it and haul his Motrin-ed body to the Target. (Which I realize isn't so much Rock Star as Negligent and Narcissistic, but read on to be more impressed with my mothering skillz.)

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So then, I've been battling some wicked insomnia and Monday into Tuesday it came a courtin' yet again. Unfortunately my stealthy throwing off the covers type behavior kept Scott awake and he missed his early flight to wherevertheheck. He then had to rent a car, but was able to help with Sick Kid, who wasn't really sick, but was banned from school until he was 24 hours fever free. I took Little Guy and Mae to therapy where we impressed everyone with our "How old are you?" routine.  But then I had to care for Sick Kid, Little Guy and Mae all day until pick up (Hero). That night I was battling slight insomnia so I spent a lot of time mopping. Our steam mop broke back in December, and no, I hadn't really mopped since then. #dontjudge #gross

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On Wednesday I actually stayed home and did lots of housework and laundry and stuff. It was amazing. I washed the sofa slipcovers. I still haven't put them back on because we have a new OT coming for an evaluation tomorrow and I would like the dog hair to be at a minimum when she comes. This is the OT Mae has already had and who is well acquainted with my brand of crazy and Mae's bad side.

Also on Wednesday I removed two seats from Mama Grizzly and put three bikes in the back so K, C and M could go to triathlon training after school. This was incredible because I had a slight major backache.  I also managed to get Molly's change of clothes to her via Mrs. M.  I also cooked a delicious and healthy dinner of left over chicken, peas and mashed potatoes. As evening crept toward nighttime I cleaned the outside of my cabinets with furniture polish. Send me a medal.

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And then there was Thursday. Not only did I knock out a pre-written post. I also broke out the bank card and did a little Zulily shopping. I know. You can not even handle my greatness. I did manage to take care of Mae and Little Guy while doing these Very Important things. I also kept up with the laundry, took out the trash including things that are not taken by the trash company, but are taken by the dumpster divers. I really wanted to tip those guys when I saw them loading up my stuff. I know that isn't how it works, but my garage is slightly less hazardous.

I picked the Big Kids up from school, talked to a neighbor while Kate made snack, broke my lenten sacrifice, made dinner that was questionable, made Paul clean his room (sarcasm aside, that was a freaking feat), snuggled Mae-Bee, and sat down to blog. I'm beat. Where's my awards?

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Friday in lent is a day of abstinence. I shall abstain from further bragging. Instead let me complain in a more-than-a-little ironic way. You see, our neighborhood has a Facebook page, which is chock full of good info and a great place to ask for recommendations on fence companies, painters, etc. However there is an epidemic of the aggressive complaint. Let's just say that neighborliness doesn't seem to mean the same thing on this page as it does elsewhere. You have the posts sarcastically thanking the person who flew through the neighborhood and ran over a kid's remote control car on Christmas followed by a string of insulting comments about said offender. This often leads to the offender commenting with something like, "Hey, I live down the street. Come talk to me. I am really very sorry, but I don't think I deserve to be tarred and feathered here. Of course I am sorry and I'll fix the situation to the best of my ability." And then you have the posts that say, "What are the rules about dogs peeing on the grass nearest to the street because my daughter was just screamed at by a neighbor." which leads to the "Everyone needs to chill around here." and "Actually I don't appreciate YOUR dog in MY yard." comments that never ever end well.

Can we all agree to just handle our business in private with the people it actually involves without the public shaming? I'd really hate to quit our neighborhood page because Some People don't know how to act.

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My incredible productivity this week is crushing my creativity and now I don't know what else to write. You guys, this is really hard! Seven is a lot of things. Perhaps I should point out those dog paw bumper magnets that say, "Who saved who?" drive me crazy and make me want to turn to vandalism. There also is a current commercial that I heard twice--and paid close attention the second time--that messes this up. It is "Who saved whom?" "Whom" friends, it's a word. Look it up.

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Oh yeah! Pope Francis. It was his 1 year anniversary as pope. Gee, I love this guy. I love him for making me feel like a dirty dirty sinner and yet like I'm super special to God Almighty and can go to confession and do better! Pope Francis is the kind of guy you'd feel like calling Frank without being invited first. Pope Francis would not be impressed with my Facebook woes or my grammar frustrations. Though I think I could slide on the grammar thing since I feel like I'm honoring my mother when I get stabby about grammar. I read one of his quotes that said the Christian cannot be sad and I was all, "Want to bet? Tell it to weeping Jesus!" But that was my baggage talking, and I realize he meant as a state of the heart. We get to have Hope in the darkest dingiest recesses of our souls, and he's so right about that. I really hate the celebrification of religious people, but I don't feel like a fangirl. I feel like I just want my kids to go and give the guy a hug and introduce him to our pets. I wonder if Pope Francis is afraid of snakes.

For more Quick Takes, visit Conversion Diary!

Feed The Hungry

I've mentioned before that Scott and I decided to focus on works of mercy as a family for the year 2014. We are extremely scattered people, so it wasn't as large an undertaking because there are 52 weeks in a year and 14 works of mercy. As Catholics we do not believe that we can work our way into heaven as many wrongly infer. However, we do believe that if a person has true faith, his works will bear fruit. The works of mercy is a list of ways we can serve our fellow man either physically in the Corporal Works of Mercy, or spiritually through the Spiritual works of Mercy. The works are as follows:

Corporal Works of Mercy

1. To feed the hungry;
2. To give drink to the thirsty;
3. To clothe the naked;
4. To harbour the harbourless; (or shelter to the homeless)
5. To visit the sick;
6. To ransom the captive;
7. To bury the dead. 

Spiritual Works of Mercy

1. To instruct the ignorant;
2. To counsel the doubtful;
3. To admonish sinners;
4. To bear wrongs patiently;
5. To forgive offences willingly;
6. To comfort the afflicted;
7. To pray for the living and the dead. 

The first work we tackled was to feed the hungry. As a mother, this is easy given how often I feed my children. The children were responsible for feeding their pets, Kona,  our dog, Gypsy,  our cat, and Gator Killer, the snake.  We also sent in can goods to the food pantry on Wednesday of that week, something we are guilty of forgetting though it is what the school does every week at the all school mass.

This was a very easy work to accomplish, but I thought that it was good to point that out to the kids. Sometimes what God asks us to do to serve each other isn't earth moving. Sometimes God just wants us to do something, even if it is a small thing, to serve one another. It also made me realize that I often feel inappropriate guilt that I am not out handing out sandwiches to the homeless. I am a mother and therefore many of these works will be built into my daily living. It is good to make certain I go outside of my routine to be of service, but it is also important to really see the work I do as service to others. If I do not, I run the risk of feeling bitter and keeping score. Thoughts of "Don't these rotten kids see everything I do for them? Why is it never enough?" can invade our hearts if we do not have the eyes to see the good we do.

There is another point I like to make when I chat with people about donating food to the food pantry. Many of my friends get frustrated that their families are on a budget, while it seems like the people who are "takers" have no appreciation, and in fact, have an entitlement problem. My friends, who cares what the disposition of the hearts of those who receive our gifts are? When we serve one another, there is no guarantee that we will be appreciated, but it seems we as human are inclined to keep score anyway. When we feed the hungry we ought to consider how God sees it, rather than how the recipient sees it. I personally can not tolerate the idea that a person went hungry when I could have done something to help. It's why I give money to those who ask for it, even if I am convinced they will use it for drugs. I can not help what a man will do with what I have offered, but I can help myself be more compassionate toward those who are in need.

As we continue to explore the works of mercy, I think it will become obvious that feeding the hungry is one of the easiest works to accomplish. Feeding the birds, our families, or donating to a food pantry can be done with zero discomfort. If you are looking for a place to start being merciful to your fellow man, I suggest this one. You will be surprised how easy it is to pick up the tab for someone else's bagel and coffee, and how often you consider it. Feel free to share in the comments any ideas you have on ways to feed the hungry. We are discovering that there are seemingly infinite ways to accomplish our works of mercy, and we love hearing about things we haven't thought about.

Boring Update

Last week was a cluster of appointments. Mae had her blood draw on Wednesday, a pediatrician appointment on Thursday and the geneticist on Friday. On Thursday we discovered Mae is still on the typical growth chart, though barely. This is a great sign that her thyroid dip wasn't too big a problem. Her weight is in a higher percentile than her height, but because we are so careful with her diet, we don't have anything to worry about. There was a vaccine, and she lost her mind for the very first time, so that was new and exciting. Her pediatrician said that socially and emotionally Mariana is developing typically. There are some things that put her a little behind, but that can be environmental because she is the youngest sibling. As the youngest sibling in my family I take offense. I mean really!

Friday we had the pleasure of MG's company because her mama had a baby on Thursday. MG is 18 months old. She and Mae have similar hair, are about the same height and have similar behaviors. Scott and I took MG, Mae and Little Guy to the geneticist, Dr. P's office. We were such a funny sight, I am sure. I had Little Guy in the Ergo, MG in the stroller and Scott carried Mariana. They all behaved beautifully. Mae had her show off moment with Dr. P. I asked her, "How old are you?" We had been practicing that question a lot.
"Tee!" she exclaimed.
"No Mae, how old are you?" I asked again.
"Tooo!" she told Dr. P.

Dr. P. also confirmed that socially and emotionally she is on target for a typically developing child. He also encouraged us to look into fully integrating her in a normal classroom. Admittedly this is something I struggle with. I want her to be able to keep up with her typical peers, but I also want her to accomplish academic success in her time with reasonable expectations. Because we will be feeling our way through this. I truly want what is best for Mae and unfortunately the experience others have had isn't necessarily going to be helpful. Mae seems to fall between what typically works for kids with Ds and what works for a typically developing child.

Both Dr. P and the pediatrician, Dr. M. impressed upon us the need for the assertion of authority with no give. They explained that Mae is carving neuropathways that will be with her forever. Even if we break habits down the road, those pathways will be sort-of a "default" position she would fall back on in stressful times. They were clear that we are not to be angry or punishing, but that strict and consistent authority is a must. Everything we expect of the older kids about cleaning up and behavior we must expect of her. Of course she will need help and patience in following through, but we have to require her to follow through. It's exhausting just thinking about it, but I've seen results already. She prays with us at mealtimes, she climbs in and out of her carseat when Little Guy isn't already in the car. (I don't want her to climb over him because she's rough on him.) She has to walk into the house and to the car. I'm adding responsibility as we go along, but she's responding pretty well. We have *knockonwood* had fewer tantrums actually, and more verbalization. I expect the tantrums will come in cycles, and we are just in a good phase, but I'm enjoying the heck out of it!

The next few months I am trying to build up my courage to focus on potty training. If I want her to go to fully integrated Pre K 3,  she will have to be fully potty trained. *sigh* I am fine with fooling around with it, but it's going to be months of work, and I'm not looking forward to spending all day going potty every 30 minutes for months on end. Pray for me!

I Better Buy That Gift. . . .

It's officially Lent! Typically I like Lent as it feels like a cold and windy spring downpour. It's unpleasant yet refreshing all the same. Today was a day that God Himself seemed to want to gift me with extra graces, and did I ever need 'em. I can't claim it to have been a bad day because I was able to roll with all of it, but if Mae were able to remember today, she'd probably demand a re-do.

First thing this morning we had a blood draw. I left the house not having eaten which required a stop to purchase coffee. Lent was not off to a great sacrificial start, but I know my limits, yo. The rain was coming down, it was a chilly 43 degrees outside, and traffic was unfortunate. Luckily my sister, La Dee called and I didn't have time to get myself in a tizzy over the whole CBC-what-if-my-baby-is-dying thing. When I got to the hospital the rain had stopped and with Little Guy strapped in the Ergo and Mae strapped in the stroller, we set off to Dr. P's office across the street to pick up her lab order. Mae charmed everyone we passed and before we knew it we had been up to the 19th floor and back down again. Off we went to the hospital lab.

When we got to the hospital the receptionist checked us in while sharing her tales of woe regarding her wedding planning and the insane amount of vendor emails she was receiving. From there we went to the lab waiting area. Mae wanted to get down from her stroller, and I, with a dose of bad judgement, let her loose. Good bye Mae, nice knowing you! I spent the next 5 minutes chasing a very determined two-year-old while a 5 month old was strapped to my thorax. They called us back before I lost my mind. This is where I strapped Little Guy into the stroller so that I could hold Mae still during her stick.

Worse draw yet.

Mae flipped out, and not your average flip out either. She lost her ever loving sense, which sent Little Guy into a panicked frenzy of cries. As I futilely attempted to calm Little Guy and Mae, the poor phlebotomist fished for a vein. This was the first time we have ever had a bad stick, and it was not helping at all. Finally I was able to put Mae into the stroller, but as I picked Little Guy up, my nose alerted my brain that a diaper change was in order. We stepped into the bathroom, where the babies cried in stereo while the bathroom acoustics blessed the entire floor with their music. After the diaper change, I sat in the waiting area and fed Little Guy a bottle. When I got into the car the clock said 10:35. Time flies when you are having fun.

We made it through lunch okay. After lunch we played a bit. Mariana received some fun gifts that we explored. While I cleaned up a little, she flounced about in her dress singing and dancing while Little Guy played in the highchair. Soon it was time for someone else to get a new diaper. At this point I discovered that there had been an attempted jailbreak from the diaper. There was, ahem, waste on the floor, on the clothing and down the legs. Being a master at prioritizing messes, I quickly buckled the Little Guy into his swing and grabbed Mae in a hazard-containment fashion. The clean up was meticulous, but certainly as speedy as possible since I still had some tiles to sanitize. Down the stairs we went only to discover. . . .nothing.

Er, we have a dog? And she kinda thinks the kids are her puppies? And if they have an accident? She might clean up while I clean up the kids? And I sorta forgot she was in the house. Instead of cleaning one or two tiles, I cleaned about ten in the hope that I killed the germs that may have lingered. Ugh.

After all that delightful activity, we went to pick up the rest of the crew, drop off the Little Guy and his sisters, and get back home. We had a pretty laid back afternoon/evening, minus a little bit of neediness from Mae, not that I can begrudge her that. She did have her blood drawn which can leave her a little lethargic.

You may be wondering where God's grace was in all of this. It was there, I promise. Not once did I feel overwhelmed or frustrated. Go back and read all that chaos. Recall what I have written about past blood draws and how my fears come alive. I can't even muster a false sense of anxiety right now. Today, the whole day, even when the babies were crying inconsolably in the bathroom, I had a view of the bigger picture. This was one moment in one day of many days. I had things to do and no one was going to be helped by my emotions becoming a factor. I wasn't dead inside, I felt horrible for those little people! However, they were best served by a calm, decisive and loving person, and God allowed me to be that person. I know for a fact I am not that person without God's grace. I'm a hot mess of loose wiring. There was even a moment, when Mae and Little Guy were sitting next to each other on the couch watching ABC Mouse on the iPad mini, that I thought to myself, "I'm so lucky to see this sight." Little Guy was playing with his toy, while Mae was holding the iPad. Mae looked at her buddy, leaned over, kissed his arm and rested her head on his.

Happy 2nd birthday Mae! Your mom may have forgotten to buy your present, but God made sure she was exactly who you needed today. Thanks for letting me catch your sweetness on camera.

End The Attitude

Tuesday is therapy day. We arrived a little early this week, and Mae decided to walk down toward the classes. After all, she was turning two, isn't that where big kids go? I picked her up and started back toward the waiting area when a woman stopped to say hello. We chatted and she asked how old Mae is. "She's going to be two tomorrow." I said.

"Oh, is tomorrow your birthday?" she asked Mae. Mae nodded and held up fingers like we had practiced. "Oh my! She really understands us!" the woman exclaimed.

When I was told by parents in the Ds community that Mae would understand the world around her, I didn't really believe them. I thought she would understand things...to a point. I really had no experience with intellectual disability and thought this was the rosy picture that people in denial painted to make our kids seem more like typical kids. I am too pragmatic to bother with denial and I loved my child for who she was, not what I wanted her to be. I laugh at myself now. Mae does understand everything. She doesn't have an input problem, she has an output problem. Sometimes the problem is that she is naturally contrary. Sometimes it's because she can't get at the response in her brain. Sometimes the motor planning isn't working. Sometimes she's just not patient enough to try and wants to do things her own way. Sometimes she has just checked out from sheer exhaustion.

I don't think it's any accident Mae was born on March 5th. It's the national campaign for "Spread the Word to End the Word." It's no secret that I don't love this campaign. But the reason is not because I have some warped view of the first amendment, it's simply that while words matter, so do attitudes. People no longer have any reason to use the words "retard" or "retarded", and most certainly deserve a dressing down for using "-tard" as a suffix. What the use of this word reveals is ignorance or, worse, callousness. It's the callousness that is the greater battle, the battle that seems too big to be won.

On The Tonight Show with Jimmy Fallon, Jerry Seinfeld made a jokes about the USPS. Included in his set was an insult about the "mentally handicapped cars" they drive. Now replace "mentally handicapped" with "retarded". Is it still funny? If you have a person with an intellectual disability that you care for both versions cut deep. We are not a humorless people either. In fact, humor is sometimes the only way to stay sane in the world of possible outcomes and exhausting rituals. Scott and I have our share of inappropriate jokes that are funny only because we are in the trenches of raising 5 young kids. (I swore I'd never make a poop joke, and I lasted about 4 days into parenthood.) I'm sure when they are teens we will have more material to keep us from developing some kind of nervous disorder.

It isn't that life shouldn't be made into a joke, and it isn't that we are delicate little china dolls. It's that the people we care for hear and understand that you are using something that is true about them to disparage something or someone else. These people that we love often cannot debate the issue for themselves. Some can write letters, but in this world of immediacy, no one has the time to wait on a response from someone like Mae. They've all moved on. How can anyone in good conscience feel good about using a word that describes something that is true about one person as a generalized insult?

My oldest is in fourth grade. This year she took it upon herself to work to educate her school mates on what Down syndrome is and what it means. She did so because some kids were using the word "retard" to make fun of each other. We recently sat down to talk a bit about respect and humor. I asked her if any of the kids in school use the words "gay" or "homo" as insults. She said, "Yeah, mostly it's boys." I explained that Kate should feel the same way about those words as she does when kids call each other "retard". I explained that there are people in the world to whom those words apply and that it isn't fair to turn an adjective that describes someone into an insult. "What if instead of the word 'gay' you heard 'retard'. How would you respond?"

"That's not okay, Mom. I would have to tell them to cut it out."

"Good. You should feel the same way about using those other words like that."

As adults we understand that throwing around words that describe homosexuality as an insult is unacceptable behavior. While we may disagree on the morality of such issues, most of us get that we are talking about human beings and need to be careful and considerate. Now what if you got as upset at the use of descriptors for the intellectually disabled as insults as you do about the words "gay", "homo" and "fag"? I guarantee Jerry Seinfeld wouldn't use those words on The Tonight Show. If he did he would never hear the end of it from the public. Somehow, making fun of our loved ones goes unnoticed.

The world doesn't love Mae. The world doesn't respect her. Some give her a pass because she is functioning well, but should that slow down, she will be dismissed like so many others like her. In Belgium she would be allowed to request to be euthanized. Our family would be denied citizenship in New Zealand because of Mae. In our country conservatives see her as a Taker because we get publicly funded services, liberals treat us like we've sentenced her to life and criticize us for not terminating her while I was pregnant. Strangers look at her face and say, "You're done now, right?" Comics use words that describe her as a punch line. Yet with all of that, our lives are better for having her there.  It would be a whole lot better if we stopped insulting people like her and began appreciating them for who they actually are.

On Commenting

My sister was up in arms over having to sign in to comment.* What evs. I took her feelings into consideration and removed the need to sign in to comment, but I did make it so that I have to approve all comments. Now y 'all have no reason not to give me ideas on what to post about during Lent. Get on it my friends, my ideas are all diaper and laundry based.

*She was not at all up in arms, but she did have the nerve to tell me her comment instead of getting the proverbial ball rolling.**

**She encouraged me to reflect on scripture in blog form. I'm thinking about it.

Coming to a Blog this Lent. . . .

It is my goal to post 3 times a week during Lent, but I would like to start now because, good riddance February. February obviously has a chip on its shoulder about being the shortest month because it sure feels like the longest. There are some family birthdays, but since they don't live close enough for cake, February is my least favorite month.

In March you will see a lot of Ds awareness because 3/5 is "Spread the Word to End the Word" about the R words. I have a post in my mind that I've been trying to work out. Though I have pushed back at the idea of ending words, I accept that the language has in fact evolved, so I have some thoughts for that day, which also happens to be Mae's birthday.

Since Mariana's birthday is on Ash Wednesday we'll be celebrating on Fat Tuesday. I plan some cupcakes with a baby baked into one like the King Cake tradition. I'm excited she will finally have an age to match the attitude. She's been a hot mess of toddlerhood these past weeks, and I have to admit, I LOVE IT! I know I say seemingly negative things about babies being jerks and Mae being the worst, but I say it with affection. I am very satisfied watching our kids strike their independence. I feel incredibly blessed to watch a person, never mind 5 of them, change and grow and yet stay steadily themselves.

Today I was speaking to the mom of one of the girls on C's basketball team. She also has two little boys, one of whom has a very rare condition called Ring Chromosome 14 syndrome. It is amazing to learn of these new chromosomal abnormalities, all of which have a host of possible symptoms. The human being is such an intricately designed creature, and yet because we love our children and nurture them carefully, many live happy fulfilled lives. If I ever come across as a zealot crying eugenics at every turn it is because I am a witness to what life can be when you care for someone disabled. When I see the value of a human being, whether a disabled person or a drug-addicted welfare recipient, boiled down to their ability to contribute fiscally to society, I want to punch a wall. It has been implied to me that we are okay to have had Mae because we do not need taxpayer money to help support her. There is no argument in the world that can communicate what value Mae has added to our lives just by being. Every single human alive brings with him an uncountable value to the world.  It is only through the experience of love that we can ever shed our blindness to this reality. I hope to share this month our New Year resolution of focusing on works of Mercy and how it has opened my heart in an uncomfortably wonderful way.

3/21 is World Down Syndrome day. Consider making a donation to one of many places that support research and development as well as advocacy for these children. Or choose another rare chromosomal abnormality to support. I have listed the ones we support on the sidebar, but feel free to comment on any you personally support.

Lastly, I would like to ask for comments in this post on things you would like to learn about our family or my opinions (I have many!). Posting 3 times a week will be a huge undertaking for me since I have developed self-diagnosed Adult Onset ADHD. The H in my case stands for "Hypoactivity", as in "Low". I can not wait to hear especially from people who perhaps are strangers to us. Please introduce yourself and give me your good (or mediocre, I'm not picky) ideas.