Ordinary Good

Today was one of those days. No, not one of those days, one of those "You'd have to be the most depressed and/or ungrateful fool for not appreciating the weather today." days. Man, the weather was perfect spring-type weather, without whatever has been bugging the household allergies the past few weeks. I even forgot to take Zyrtec this AM, and I didn't sneeze one time! What is interesting only to me is that I was expecting it to be one of those days.

Scott left town yesterday.* Paul is in our bed every night, and the night before Scott left, he was up six times. Six. Yeah. I was sunshine and rose petals yesterday. I did, with a lot of prayers to my guardian angel and those of my children, take all five for haircuts at 6 PM. We also made it through bath/shower for the littles and a short snuggle with Paul and Molly. It was during that short snuggle that I told Paul that he would be sleeping without a light on that night. I explained that Important Scientists had discovered that having a light on at night tricks our bodies into believing it's daytime and time to work and play. He was actually very okay with the idea, but asked if he could fall asleep with the light and have me turn it off when I went to bed. Who knew he could be so reasonable? The result was a boy who slept until 5 AM and who asked that I leave the hall light off when I returned him to his bed for just one more hour.

For some insane reason I was able to get everyone breakfast even though we were out of waffles, and everyone got their respective duties done. I even doled out a few disciplinary actions that were received very well. (The on-duty lunch box washer didn't even run water over the lunch boxes and plopped them in the dish rack as though I would not notice the crumbs and smears when I made lunches. She now has lunch box clean-up for the rest of the week.) Little Guy was dropped off and we made it to school with time to spare. I then proceeded to Whole Foods where, for the first time ever, Little Guy was gleefully riding in the Ergo while Mae, who started the trip on foot, was happily confined to the cart. (She was running around charming everyone doing the AM stocking, but also became enamored with the glass oil bottles. The handwriting was on the wall. Crisis: averted.) I left Whole Foods having spent less than expected. Has that ever happened before? While I was in the store spring came to Jax, and I walked out to the most glorious weather imaginable.

This is where my mind did the thing where it reminded me that terrible things happen on beautiful days. Yes, 9/11 came to mind. Luckily, things had gone so well that morning with the kids that I swept that thought away with the thought that at least for this moment, life was perfect. Even a Terrible Thing couldn't rob me of what I had right then.

I went home to put my frozen food away and fed the baby and Mae on the front porch. Little Guy just wasn't hungry, so we packed up after a diaper change and went to our next stop; Costco. I think it may be a law that families with 3 or more children must buy certain things in bulk. I love Costco which is one more of the ever-growing list of "How I know I'm Never Going to be Cool Again" items. Also on the list is the conversion van sitting in my driveway, the fact that I own more than one pair of yoga pants and do not do yoga, and the phrase, "Life isn't fair." Once again, we had a great time at Costco. I'm guessing it was senior discount day with the number of older couples perusing the aisles. Many stopped to ask how old the Little Guy is and complement Mae on being a good big sister. This is one of those things I only correct if you are going to be a part of my future. If I am not likely to run into you again, I feel it's better left alone. Every second explaining that I am babysitting is a minute that I'm not debating buying a new steam mop I didn't know they were carrying, ya know?

The day went on in wonderful ordinary fashion of great weather, cooperative children and perfect punctuality. Now I'm sitting here writing on my blog that I hardly bother with any more and any reader who might meander over this way is wondering, "What is the point?"

The point is this; raising a kid with Down syndrome is more ordinary than not. Once again the internet is revved up with the new Belgian pediatric euthanasia law, and fears that it will be expanded to children with non-deadly disabilities. Some of the reactions are along the lines of, "You should wish for a child with Down syndrome. You should be so lucky." Once again I find I cannot relate to the insistence that Down syndrome is a blessing for those who have it. (For those of us who love someone with it, it certainly is!) Once again I think of what Mae seems to want in her life, which is to be typical. This time I wonder if the ordinary is what will make us understood. What if the ordinariness of life is what conquers the fear of Down syndrome? What if we just told the truth?

The truth is that you get into your routine just like with any other child. The truth is your child will need to be special and not special in ways that will confuse and challenge you. The truth is you will be happy with progress, no matter what it looks like or how commonplace it is. The truth is that most days you will think more about what to make for dinner than your baby's condition. The truth is that laundry will irritate you more than that extra chromosome. The truth is that this is what raising a child, any child is like. There are good days, bad days, great days and ordinary days with awesome weather that will remind you that life isn't about being happy, it's about being satisfied with what is good. Life isn't fair, but life is good.

*Normally I wouldn't advertise that Scott is out of town, but since there have been some local break-ins, our area is under constant surveillance. Also, our dopey looking dog will tear out your throat if you threaten her babies or her meal ticket. True story.

Quick Takes That Displays My Peculiar Brand of Crazy

--- 1 ---

I was fired by an OT this week. That may sound dramatic once I flesh out the story, but it's reality. Mae's in the early intervention public program that provides certain therapies to us until she is three. Her OT at Hope Haven suggested we increase OT to twice a week and perhaps see about doing that through Early Steps so that I wouldn't have to drag her to another therapy another day of the week. It's been over 6 months of exploring that option which resulted in parting ways with one OT who never touched Mariana once, and who would say things like, "Well, she's going to be delayed. She has Down syndrome." anytime I would ask about teaching her a new skill like, say, holding her own cup.

At last we had a new OT assigned and she came on Friday into the Mama bear den. In my defense, I felt it was necessary to come at her both barrels because Mae will be two soon and only has one year left of at-home therapy through this program. It's be eight months to get this particular service. We don't have this kind of time! So I gave it to her straight. I won't be remodeling my home to accommodate her. I won't be carving 15 minutes out 4 times a day for OT. I want to know what we are working toward. I want practical homework. I want you to push us both. I want you to treat her as a person rather than expect her to do things because she has a diagnosis. You have to actually do things with her.

It was a lot, but we have a life and we need our child to be able to function in it. She must drink from a cup, and so I give her one. She must eat with a spoon and fork and keep her plate on her tray, so we work on that. She must dress herself at some point, so we try to have her do as much as possible. She may be delayed, but that doesn't mean we don't work. You may have awesome therapy techniques, but if they can't translate into daily living, then they won't get used much. We don't spend tons of time playing in the play room. And guess what? That's normal. Life is therapy, so teach me to weave the therapy into our lives.

She was very receptive to everything I had to offer. Shortly after she left I received a text from my primary service provider that the OT couldn't find time to see us. Message received. Moving on.

--- 2 ---

Mae has a new, but familiar OT at Hope Haven, Mr. M. He's her hands-down favorite person there. She basks in his attention. We can not wait to start with him. This change allows her previous OT to attempt to see Mae through Early Steps. We really like Mrs. A, and have been gunning for this all along, but she is very ethical and said it presented a conflict of interest. If she recommends 2x a week, and then gets Mae through another program, it can be seen as double-dipping. Now that there is not conflict, we hope it all works out. It helps that Mrs. A is used to my brand of crazy and has already seen me cry.

--- 3 ---

Laundry.
My parents came to visit and my mother, God love her, did laundry non-stop. I mean, we are talking wash and fold. So I am trying to keep up. I used to love doing laundry. I am not sure when that changed, but it has. I also used to love to iron. If I had tons of money I would like to imagine that it would all go to the poor, but in reality some of it would go toward hiring a laundry service.

--- 4 ---

In our home I am known as somewhat of a stickler for doing things well. Good enough isn't. This is one of the reasons God wants me to have a big family. Good enough has to be good enough when there are so many humans whose existence demands they ruin all the things, leave all the lights on and sleep in one bed with all of their joints lodged into one or both parents. Thus this story is about me doing a project "well enough" only to have my father vindicate my usual stickler attitude with his own.

I painted the girls' room. I primed and painted the girls room in two colors, lavender and teal. I set up two lofted beds with desks. I also did this in three days time. When my parents came to visit the girls were very excited to show off their new digs. The next day my dad was making a shopping list and asked if we had masking tape.
"We have painters tape." I answered, wondering if that would do.
"You have painters tape?" he asked.
"Yeah, it's in the garage."
"Then why didn't you use it in the girls room?"
This caused me to crack up laughing because it was a perfect parent-dig. I still don't know if he meant it as a dig or if it was a real question. It was also a perfect mirror to a conversation that Scott and I may have possibly had in the past. Let's put it this way; Scott found that conversation explained a lot about me.

So, I'll be doing some trim work this weekend. (No, I won't. The girls don't care, so neither do I!)

--- 5 ---

Let's talk about 5 year old boys playing basketball. It is irritating to me that some of these boys are focused and intentional and my kid is lying on the floor pretending to have been blasted by the alien shaped like a basketball. It irritates me that my kid is normal and these freak athletic and focused children are making him look like the freak. Also, these parents that pay attention at practice annoy me as well. Who cares about practice? I've brought my kid, I've done my duty. I did not sign up to coach, I stay in case of emergency, and I noticed when he was absent from the court and had the presence of mind to ask the coach where he was. He was in the bathroom. There. Mission accomplished. My kid might be a great ball player and he might not. I sure can't tell at 5, and I don't care to plan his career at this point. I'd just be happy if he would stop break dancing on the court.

To be fair there are plenty of kids just like Paul on his team. The team has kids ranging in ages 3-6. It's crazy to think that this was a good idea, but that's what you get when you sign them up for a church league. Everyone gets a shot, even the weird kids.

--- 6 ---

I found a retreat I am hoping to attend. For this to happen LOTS of things have to fall into place. It's an impulsive decision, but I think a good one. It's not religious, it's for moms, and it's not for moms of special needs kids. It seems to be just one big fabulous girls' night out.

It is a little surprising to me that I do not feel the need to justify this. I told Scott about it and gave no reasons why I want to go. Of course he was supportive. I have actually begun to justify it to myself and made a conscience effort to stifle that. I don't want to justify why I need this. I don't want to list all of my responsibilities and my habits of not taking enough care of myself. It's the same old song for every parent in all of history. I want to go to this thing because it looks fun and it's not with anyone that I know. When I say I want a retreat, I mean from everything familiar. I want to have myself a little adventure, and it feels great not to have to bemoan this life I love in order to feel like I deserve it. I don't deserve it, I desire it.

Too often, probably because of the culture of entitlement that we live in, we feel that all of our desires are somehow too selfish to be satisfied without a litany of justifications. I don't think that it has to be that complicated. If you are a well adjusted person with a modicum amount of self awareness, finding something that ignites interest and won't place undue burdens on others is a great thing to explore. Fun is good for the soul y'all.

--- 7 ---

We have decided to homeschool Kate for next year. This is not a commitment we've made lightly, but the kiddo is excited. She's so adventurous and has a million things she wants to try. We've worked out her music and PE credits, well mostly. We want her to take martial arts, she's committed to tennis. Nothing is perfectly easy.

I informed the school, and I have to say that I was really happy with the conversation that the principal and I had. He's a good man and a great administrator. He has been very supportive of making sure that Kate's at least on par with the school just in case we decide to have her return. I think we may well do that, but I'm taking it one year at a time. He gave me great advice regarding her independence as a student. I feel very blessed to have this school in our lives. None of the other kids are interested in homeschooling and I'm good with that. One at a time seems just like my pace at this point. I'm excited and nervous to see where this next school year takes us, but we've got a few months to go with this one, so I'll be patient.

For more Quick Takes, visit Conversion Diary!

Turning Pages

I'm not sure where to begin. So much has happened, so much good and so much sadness. We've lost a few people in our lives, which has been harder as Mom and Dad to little ones than as ourselves grieving the loss. Two of our kids are particularly sensitive, and nothing feels so helpless as watching a beautiful, sweet soul become so painfully aware of death. One cries openly and takes comfort in faith. The other, too little to be so philosophical, makes the uncertainty known with "what-if" questions and the desire for more attachment. All four of the "bigs" seek normalcy and stability and are a little more aware that life isn't always protected by love.

Scott mentioned that this is the place we are in our lives, the place of losing people we love, grieving the loss and being forced to march forward in love and light for the little people who watch so carefully. I don't think either of us was prepared for this level of unselfishness. How does anyone put aside grief and fear of our own mortality? I can't answer for anyone else, but the smooth round cheeks and big shining eyes of my children help. The idea that I want their last memories of me to be those of a patient and generous soul helps too. However, even that thought can stir up resentment that I feel such pressure to be perfect out of fear. It's a question that has no answer except to continue on trying to be better at everything, even grief.

********************

I just read this and this. It struck me right down to the marrow of my bones. Mae is love and light. She is one of they, as in, "They are so sweet!" While she can snap like the best toddler with a, "Don't touch me!" babble and finger wag at the Costco employee who couldn't resist, she is mostly Madame Mayor complete with parade float wave. The worst part, for me, is the constant need not to make a fuss. Everyone wants to give her what she wants, thinks she is so cute and chastises me for being strict. I don't want to fight with everyone. Also, she's not even two. But then again, she's almost two and she acts like it in part because we don't treat her differently. (Also because she was born contrary.)

All of that has been running through my mind while we've been in the midst of another tooth-a-thon. Mae is getting two more molars. (How many can she get at this age?!) She is also battling a cold, so it's Congestion Junction up in this house. During such times she can go rather dormant and just want to be cared for, held and sleep. I've rocked her so much the last few days I find myself rocking in four legged chairs just out of habit. Therapy was a disaster this week, but for one thing the OT said. Mae was doing cold water therapy, because swim lessons are on the horizon, and she was having none of it. It was not defiance so much as she just didn't have it in her. Mrs. A wrapped her up in a towel and she rocked her. Eventually Mae slid off and toddled over to Mr. M, her official favorite, and snuggled him. It was then Mrs. A told me that sometimes this is better than therapy. When it's clear that therapy isn't going to be effective, nurturing that relationship can serve to show Mae that they care for her. In short, snuggling is therapy too.

I love that last sentence. Most days I'm running around analyzing my children and their needs. These last few weeks, with the deaths and the illnesses and the excitement of basketball and a birthday and a visit from grandparents, I've noticed who is in a good groove and who needs a little extra attention. What I have noticed most is that each of the five needs more snuggling. When I've made a point to pull them in they get a little steadier for the next few moments, and so do I. Snuggle therapy has been added to the routine. After all, life is therapy, and life is so much better with lots of snuggles.

****************

Molly is brilliant. I don't say that to brag, that child is something special as it is. I say it because people other than me are starting to notice, and I only began noticing this year. Shoot, two  years ago I was considering holding her back in pre-K. Thank goodness her teacher knew my concerns were a matter of Molly's reluctant work ethic rather than her ability to do. This year at her conferences her teacher expressed some concerns about Molly keeping up when things got a bit more challenging. I didn't say it then, but I was thinking, "She's smarter than you think." I knew her teacher was exactly where I was two years ago. I discovered something this school year: Molly will work to reach a goal, but will never work to avoid negative consequences. When I realized this, I have to admit, I was thrilled. I used to worry about this girl and her apparent lack of desire. There was the greatest sense of relief once I realized she was lacking passion because she was lacking motivation. 

The battle, of course, has been to discover what inspires her. We tried money, but Molly isn't one of those kids who can earn a penny-per-task and extrapolate that into saving for, say, ice cream on Saturday. (She was getting a penny for everything, from brushing her teeth to getting dressed to emptying her backpack. You bet she could earn enough for a little $1.25 container of Hagaan Daaz.) So, we moved on to a big chocolate bar. That worked. For 7 days she was compliant and helpful, two adjectives that would formerly be in the "antonym" category for Molly Descriptors. (Not that she is bratty! Molly's awesome at flying under the radar and not being confrontational, but also, not doing as asked. When asked why she didn't do something, her frequent reply was, "I forgot." and walk away.) Since that experiment I noticed her presence more when it's time to clean up, and I notice a happy patience when she has to wait for what she requested. Molly's a quick study, that's for sure. It's really too bad her Mommy is so slow on the uptake. 

********************

Ten. Kate is now ten. I can see that we are on the cusp, that the tears come a little too easily, but the sweetness is closer to the surface too. I see the posture changing, the verbage evolving and the ability to weigh outcomes maturing. She's so pretty and completely clueless and a little awkward. She doesn't like boys yet either, but I know she won't volunteer the information when she starts. Her cheeks are still full, but her jaw is a little more defined. 

She's asking questions, great ones. Often I'm not prepared to answer her, but I tell her and she understands. Sometimes you want to be careful about your words and string them in a way that makes sense. She gives me space to think about it. She cares about her friends a little too much, and she's starting to protect her siblings by helping them with their messes before I see them. I catch her absently stroking the dog while reading and am caught by the beauty of the moment she won't remember.

Her room has been painted and changed, she has her "space" carved out with her own desk. She does her homework in her bedroom now, with her sister at the desk next to her and the door shut. She remembers to shut off the light sometimes, and she asks to vacuum on ocassion. 

A decade of raising a baby into a toddler into a little girl into a girl. What's next is so close I can feel its presence and see flashes of it in her tilted head and her furrowed brow. For now she is just a girl, a magnificent and perfect girl. The old preschool song is wrong. 3 isn't the magic number, though there is a magic number, and it's 10.

No, I'm Not Pregnant

Let's get personal. First of all, if you are one of those people who comment on the size of a family, other than to say, "What a big beautiful blessing these children are." stop it. Cease and Desist. Yeah, you guessed it, another fabulously awkward conversation with a stranger was the order of the evening last night.

C had basketball practice, her first of the season, last night. I arrive at exactly one minute before practice was supposed to start because, well, herding cats and inconvenient bathroom breaks, etc. Her coach introduced himself and then asked, "How many are there?" Five dude, I think, I don't know anymore. He then informed me that everyone thinks that anyone with one more than they have is crazy. Reread that last sentence, it will begin to make sense sometime next year. So, he tells me, he has four and those with three think he is crazy, and he obviously thinks I am crazy. Nice to meet you, Coach, this is going to be a long season.

This is one of those classic, "What I should have said..." moments. What I should have said:

•  We don't have a T.V.
•  Congratulations, that was an original insult on the size of my family that I have never heard before. I applaud your creativity, and expect you will do well when your children are teenagers. 
• Shut up. 
• *Sigh* 
• We are very well to do. (Said in a stage whisper.)(This would have never worked because of what I was wearing, which I am embarrassed to report, was smeared with pea soup that Mariana had on her hands and wiped on my black pants.)

So here is my one and only effort to ever explain the existence of my children, and any future children to the world. Scott and I love each other. We love children, big families, chaos, and any lifestyle that will pull our noses out of our bellybuttons long enough to make us more human and less plastic. We wanted four boys and two girls and two dogs and lots of land, an organic garden that didn't attract deer and rabbits, and durable carpet that didn't get stained 37 seconds after installation. We have, so far, 4 girls, one boy, one dog, one cat, one ohdeardoIlovethatboy snake, a normal medium-small yard, vegetation that either dies from fungus or deer or rabbits, and stained builder-grade carpet in our suburban home. While we are aware of what causes children, and how to "stop that from happening" our choice of NFP has helped us get the timing part of planning right. Unfortunately we've discovered, barring some kind of rule-making exception, timing is about the least important part of child rearing.

So now that you are aware of the most none-of-your-business parts of our lives, lets talk about you. If you are the type to say:

• Don't you know how that happens?
• You've sure got your hands full. (Unless this is accompanied by an offer to load or unload groceries, push a cart while I peel a filthy and distraught child off the floor, or some other form of assistance. Say whatever you want as long as you are helpful.)(Because, God help you if you say this while sipping from your Starbucks while sporting dangle earrings that the mother hasn't worn in 14 years because her oldest baby ripped one out and she has a slight case  of PTSD from the experience, but boy does she love dangle earrings.)(Didn't happen to me, but I have an active imagination.)
• Do you want more children?
• Are you done?
• I made my husband get "fixed". (To which my go-to line is, "You mean broken, cause you realized it was working before, right?)(And to those who have had this surgery, just know that if you broadcast it by calling it "getting fixed", you totally have invited me to make my opinion on the subject known. Cause I never wanted to know the state of your vas deferens in the first place.)

Or to those without children:

• Do you want children?
• When are you two going to have children?
•  Life is not complete until you have a child.
• Life will have so much more meaning once you have a child.
• Babiesbabiesbabiesbabies

Stop. It is none of your business. If you want to know if it is your business, take this quiz:

1. Are you responsible for assisting in the making of the future child?

That's it. If you are not going to be doing the thing that makes babies, or filling out the forms that adopts babies, then zip it until you are invited into a conversation. Even if there was a previous conversation, you better be really careful about asking for an update. Why? BECAUSE IT IS NOT YOUR BUSINESS.

I realize that you should get it by now, but I feel as though there have been 34,528,987,211 articles, books, blogs and graffiti published on this topic, and yet it is still happening. To be clear, I have been guilty of this, and may even slip up in the future, due to lack of sleep and nutrition consisting of left-over smoothie and Nut Thins crumbs. However, I hope it is to someone with whom I have a very close relationship, though I will not be surprised if I receive a snarky reply or a punch in the nose. Also, if the offended was polite, I'll be hitting up confession, because, well, see above.

I bet you thought this post was about being fat.

Post brought to you by the letter "no sleep" and the number "parentheses".

Quick Takes Katsup style

--- 1 ---

Happy New Year.  2013 was a great year for us as a family. It's funny how I keep reading what a dud of a year it was, but how much I found it to be full of blessings. Perhaps the bad news made me more appreciative of our blessings. I mean, when you constantly read how the world thinks you should be able to euthanize your baby, but your direct community celebrates and supports everything she needs, it makes fertile soil for deeper gratitude.

--- 2 ---

The break has been lovely. Scott took a chunk of time off and we did not travel. As a family, this was awesome. Last year we did not travel, but everyone got the flu.  Having Scott home, not traveling has been amazing. We had so much fun with his mom at Christmas and we spent the rest of the time just relaxing and enjoying each other and the nice weather.

We do love to travel and visit family. I think that is what was so special about this holiday. The kids woke up in their own beds, they relaxed, they didn't encounter germs with an over-tired, over-sugared system. The girls sang in the choir on Christmas Eve and we celebrated the New Year outside with our neighbors. It was delightful.

--- 3 ---

Let's talk Saint Joseph for a second. Did you know the traditional understanding of the story of Saint Joseph's reaction to the Incarnation was that he believed Mary was telling the truth, but was terrified to act as a caretaker for the Messiah? Yeah, me neither. So, when the angel says "Do not be afraid to take Mary as a wife." It's a message of support, of "You were chosen too, Joseph, you can do it!"

The reason this struck me so profoundly was because of the high rate of termination that babies with disabilities face. Most parents who terminate are ending a pregnancy they were ready to accept until the testing came back with a Diagnosis. I think most of these parents want what is best for their children and many are led to believe death is better than a life of pain. I wish they all had a dream like Joseph to remind them that they don't have to be afraid.

It also struck me because I have always rejected the comments about me having to be extra special to have been given a child with Down syndrome. I always see my kids as people that I needed because they call to be more than I was. And they are! But when I read about Saint Joseph, I realized that God did choose me, not just as a call forward to make better use of my talents, but also because He is trusting me to rise to the challenge. He picked me. Whoa.

--- 4 ---

Speaking of Mariana, we've experienced a small miracle. Two months in a row showed a slowing of her thyroid function. We went for a third test as a formality to get in with the endocrinologist sooner. If you can show a trend, especially before the age of two, they see that as a more pressing case. So, I took her for another blood draw, which is its own kind of hell now that she knows the routine. We sort of forgot about it over Christmas, and Scott finally called the geneticist yesterday. When Dr. P called back the news was, well, weird. Mae's function is better. Her T3 and T4 have normalized, and, though her TSH is still running a little high, it's coming down. This is not the usual pattern, even though your thyroid can have blips where its function can get wonky, her particular case is not the usual situation.

We are still going to get in with the endocrinologist, just because she does have Ds, my thyroid is wonky, and hers isn't acting exactly normal. I'm happy to add a specialist even though it is trying to fit one more thing into an already crammed schedule. I don't want to have to wait if things take a turn down the road.

--- 5 ---

Mae's speech situation is driving me crazy. She can talk. She speaks in sentences when she's frustrated. But most of the time, it's just babble. She doesn't request items, regularly label items or answer questions she can answer. It's a constant battle to get her to participate in a conversation, and she sticks with the familiar. The reason this drives me crazy is that her ability exceeds her willingness to do what she can. Okay, okay, so that is the human condition, right? However, there's a whole lot more riding on her development than usual. It can be a use-or-lose situation for her, and there is no way to communicate that to a 22 month old toddler. The fact that I have entertained the idea of trying to tell her this is just more evidence about how crazy I'm becoming. As usual, the only thing to do is hang it on the Cross and let Jesus work it out. Now what's the over/under that there will come a day when I complain that I can't get her to be quiet?

--- 6 ---

My son got a baby corn snake for Christmas. It eats infant mice alive. I'm surviving. Barely.

---7---

PHOTO TIME! 

Best we could do with an iPhone and low lighting

Mae walked about the church prior to mass and promptly fell asleep during mass. It was perfection.

Mae meets Baby Jesus, whom she promptly "pat-pat-pats" in an attempt to burp him. Only, that's his knee.

Charlotte's turn with Mae

A hopeful Christmas Eve prayer

A Desperate Christmas Eve prayer by a boy who spent the day before in his room after a major offense.

Best family photo in YEARS

Santa comes through in the clutch.

Mae's own personal baby to pat-pat-pat.

For more Quick Takes, visit Conversion Diary!

Quick Takes Rushed Advent Style

--- 1 ---

Happy St. Nick's day! We don't do St. Nick around these parts, except at school where the children leave their shoes in the hall and get a candy cane. Molly, being preshus, can't have your run-of-the-mill candy cane, so with an uncharacteristic burst of foresight, I sent in special candy canes. They happen to be full size where as the other children get a mini. Ha-ha! Take that corn syrup tolerant folks!
On her way out the door, Charlotte gave me a knowing smile and said sweet-as-you-please, "I know." This was a huge leap from a few weeks ago when, after Molly lost her first tooth, I had the Tooth Fairy talk with Charlotte. She was not happy. She said she felt like we lied to her and, if you know Charlotte, this is as good as betrayal.
Now, I have always woven into our Santa stories that Saint Nicholas lends his name to those who want to do good for others in secret. I had hoped it would make that particular talk easier. So, of course, I pulled from that to explain that sometimes growing up is scary and fairytales often help children understand the world around them. Parents want their kids to understand that while growing up can hurt (pulled teeth), there's always a gift that comes with it. She was grudgingly mollified. This made me nervous for the Santa reveal that was sure to come shortly after the Tooth Fairy. But apparently she at least knows the Saint Nicholas deal is the grown ups, so I wonder if she's willfully hanging on to Santa for one last hurrah.  

--- 2 ---

Molly has a second wiggly tooth. I would like to yank that sucker out before it gets all gross and sticky-outy. She is not having it. The other day someone opened the door on her face, and I sadly checked to see if it knocked out her tooth before I comforted her. I'm the worst.

--- 3 ---

Mae is progressing and not progressing. Therapy is fine, but home life is chaos. I've been in my Christmas Get It All Done mode, so that leaves little time for practice. I feel guilty, but I know myself, if I don't get my To Do list accomplished, I'm grouchy. It's Advent, that won't fly.  I have found that motherhood is often a lifestyle of prioritizing all the most important things. So, I thank God everyday that my husband folds laundry and my kids get paid a nickle for every chore they do. Things are getting done, except lots of therapy. (BTW, Molly and Paul only get a penny and only if I don't have to nag them. They are very poor, but Kate and Charlotte are very motivated. Soon, I may be poor.)

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 Um, the cardinal of Chicago is coming with the bishop to say mass at our parish next week. I do not wish to bring the littles, but Scott is making me. Anyone know any speedy novenas for your kids not to embarrass you at mass? What about me not embarrassing myself? We are currently hosting a Flat Stanley, whom has been our guest for waaaayyy too long because of my slackeritis. I so want to get a photo of Flat Stanley with the cardinal and bishop. I mean, only Pope Francis would make that Flat Stanley project cooler.

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I'm running out of Quick Takes. Actually, the cat just hissed at Mae, who deserved it because she's almost two and the cat is smart. But here's a few nuggets regarding faculty Christmas gifts from me to you: Alcohol. Even if your teacher doesn't drink, she can bring it to a party as a hostess gift. I didn't get all the teachers alcohol, but that is because I found something super cute that I hope none of the other moms are doing, but if they are, it's cool and returnable.

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Here's another tip: Wrap all your presents as you buy them. Makes life so much easier. While you are wrapping, give your baby some scraps to rip, and call it therapy. I'm here to help, yo.

Knocking the books off the shelf and climbing on the table also equals therapy. And parental negligence.

 

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My final Quick Take is a big thank you to all the good people I've run into these days. Tuesday I went to Starbucks because I didn't have time for breakfast and we bought a huge Nissan NV3500 that I was afraid to go through the drive through with. (Starbucks has an egg white wrap that I like.) I walked out carrying coffee, water, my wrap and Mae when a younger-than-me man asked if he could help and took my breakfast out of my hands before I could answer. He then called me super mom as I plopped Mae in her seat four stories up, and wished me a great day. Now this was a tiny little exchange that took all of 45 seconds, but it mattered. Contrast that with the black Corvette that has crossed double yellow lines to pass me on two different occasions only to hit the same school zone and not actually go any faster, and you can understand why I hound my kids about being kind. Not nice. Nice is just vanilla not being a jerk stuff. (It would be nice if Corvette would stop passing me like a ninja.) Be kind. Help someone pick up their keys, or crayons, or carry their project. Complement the librarian. Tell the kid who constantly annoys you to have a great weekend. I think the hustle of the holiday season is a great time to just find little ways to make someone else feel cared for.

For more Quick Takes, visit Conversion Diary!

Update Time

So, November and December are shaping up to be incredibly busy, in that awesome, yet slightly anxiety producing way. That said, I do want to write up a little update on Mariana's progress because, this week has been awesome.

First of all, the Buddy Walk was so wonderful. Our kids' school is just full of individuals who genuinely care about each member of our little community, and honestly, sometimes that's the best hug one can receive. We raised over 2,500.00 dollars for the DSAJ, and that was with minimal output from  yours truly. Others took our cause and ran with it, which is just so inspiring. The DSAJ is one of those organizations that I just didn't care much about when Mae was first born. I had a baby and four other kids. This was not going to be my banner cause, you know? The reality of life is that if you don't work toward something you need, you don't get it. I had a lot of God elbowing His way into my life that first year and learned so much about Mae's needs. This organization has highlighted the gift that individuals with Down syndrome are to the community. To me, that's the key to stopping the eugenics movement; showcase the dignity and there is no way to argue for the destruction. We are so blessed to have the DSAJ.

As for the actual walk, well Miss Thing did her thing, which is to say, she was contrary. Mama had it all planned out. We left the house at 10:30. Mae slept on the way. We had fun, and some lunch, took pictures with the school cheerleaders, and met up with our teammates just before the walk. Mae fell asleep in the stroller. Wait. Oops, that wasn't the plan. Okay, Mae slept the first 1/2 mile. I picked her out of the stroller, as my hooligan children splashed in the freezing ocean. It was windy, so Mariana woke up. The last little bit I placed her on the beach and called her to walk to me. She stood there. She saw the cameras and she posed. She clapped. She waved her finger in the air. She laughed. She did not walk.

Here's the benefit to having a contrary child who also has a disability; you sort of delight in their individualistic behavior. The reality, when you hit the therapy circuit, or you are first telling people about your child's condition, is that suddenly your kid becomes that disability. That is to say, the disability becomes the most remarkable thing about the child. Obviously, hey, the therapists need to do their thing, and we have great ones that do highlight Mae's personality and delight in her. However, when you hear, "Oh, they are such nice people." a million times, or, "Yes that's very typical for kids with Down syndrome." you kind of delight in the non-conformist behaviors.

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Moving on. We had some big milestones hit this week. The major ones have to do with Mae's walking. We are working on getting her orthotics! This is awesome news because orthotics are a very common need, but the need for them only comes when you have a proficient walker. Given that Mariana can walk, pivot and walk in the other direction as well as step up on a very low step, like onto a mat, she is now a proficient walker. WOOOO! So far, we are hoping to get away with the minimum of a sole insert, but we'll see. 

The second big deal is that we are now able to reduce her use of the dreaded, yet slightly adorable, hip helpers. Now we are going to put super tight leggings on her for the input, but the hope is that she won't need the control to keep her stance narrow. So far taping her belly with Rock Tape is doing the trick. Unfortunately Rock Tape ain't cheap, but that's the breaks, right? I will say this for Rock Tape; it works miracles. Charlotte pulled an ab muscle and was not resting it sufficiently, so we've taped her a few times and the difference has been magical. In terms of kineseo tape, this stuff is the best. You runners go get you some!

The current focus of our lives is language. Mae can repeat just about anything. She knows how to ask to eat and she knows how to tell me "No" and "Stop". However, she doesn't label or request things like calling for Scott or one of the kids, or asking for her cup. So, we have a huge project in mind for the weekend. We're going to paint our little half-wall with chalkboard paint and hang a magnetic whiteboard as well as a strip of velcro. Then we are going to put velcro on some play-kitchen items and print pictures of them. Then we'll work on having her go get them from the pictures. We'll also being hanging pictures of people and requesting that she retrieve those. It's all very complicated sounding, and it is. The deal is that she has this youngest thing working against her because she has no need to request items. She's got all these big people to get her stuff. So, while she might say things like "Caterpillar", she won't say, "Down" to get down. I, for one, am not looking forward to these new restrictions on granting her what she wants. More work for Mae = more work for Mom. Here's hoping she's a quick study, yo.