Thursday, January 31, 2013

For Kate

Today she is 9. The day I found out she was a girl I cried. I cried because I thought, "Someday she'll feel like she really hates me." The future that is nearer by the second.

What time has taught me is that she is herself. She is not simply a girl, she is Kate. She is better than I imagined, less inclined toward rebellion in some ways, more in others. She's more like her dad than I realized she could be, and that comforts me. For one, she likes peace. She is argumentative, and cannot let a wrong stand. I like that more than I thought I would. She is coming to a place of carving out her own future. She stands up to her friends, something she was terrified to do last year. She tells them she doesn't want to talk about people behind their backs, and not to make fun of Charlotte. She curbs the mean girl attitudes in her group, and they curb hers too. Once she cried at school, but she didn't want to talk to me about it. That was pretty tough, but a proud moment none-the-less because it showed her willingness to grapple with problems on her own. She can't always run to me, I know that.

She's still creative, but I wonder how much of that I've kept her from exploring. Our life doesn't give her much free time to just experiment. Last night we made cupcakes from scratch for school. Our frosting didn't turn out and we ended up buying bakery cupcakes to bring. She came and wrapped her arms around me and said, "I don't mind, I just love baking with you is all." She's generous that way.

She wants to try everything once, and she's brave as can be. We went on her first roller coaster ride in November at Hollywood Studios in Disney World. I rubbed her leg the whole time to help keep her calm, only she told me that it was annoying. We went on Tower of Terror, which left her visibly shaken. Later she told me she wanted to ride it again because she didn't want to leave afraid. She's tougher than I credit her.

Nine years have gone by too quickly. In another nine she'll be 18. I'm no longer scared she'll feel like she hates me because I love her so very much.

Monday, January 28, 2013

Molly Monday - The Make it Work Edition

Friday I revealed that Mariana is too small, was losing weight and the likely cause is an inefficient nurser combined with dwindling supply. I decided to feature this problem on Molly Monday because it is about diet and nutrition and what happens when you can't follow your own philosophy.

It started a while ago, when I realized that I was having difficulty giving Mariana enough time to nurse. I looked up a few recipes for making my own formula. The best one I found was made with ingredients I would have to mail order and milk I would have to drive 30miles round trip to get. After that I would have to make the formula, which was a time consuming process as well. Though I feel like I might be able to come up with a crock-pot version, I have neither the time nor the inclination to fiddle with recipes. Time and Money - They are Finite.  (The title of my next first book.)

Flash forward to Thursday when the nurse practitioner suggested I begin to supplement with formula. I was of two minds, as I always am about not being a paragon of perfect perfection. On one hand I was so grateful that the issue of her weight had become a problem. I had long been concerned about her growth, but had been reminded time and again that kids with Down syndrome do not follow the normal growth chart.

On the other hand, formula is gross. The smell, the texture, the spit up. It's gross. Never mind the processing that making formula entails. And the corn syrup that it contains. And the soy. And that I haven't found one that is certified non GMO yet.

Yes, I was torn. However, I quickly and quietly calculated our dilemma and left the doctor having made a decision. I bought two kinds of formula, one is hypoallergenic, though not organic and processed to high hell, the other is Earth's Best organic. I buy the Alementum in liquid form because it has no soy while all dry formula has it. My plan is to try to alternate the two in the hope that I can keep Mariana away from too much soy. Ugh, soy.

I also will admit to fearing judgement from some of the purer foodies out there. But again, their lives are not the same as mine. For example - there is a cheaper, more convenient and healthy way to make formula. Unfortunately it uses coconut oil. Usually I believe coconut oil flows from the top of Mount Olympus, but because I have two nephews on my side of the family who have tree nut allergies, we've been cautioned to wait until at least a year to introduce coconut oil. Deciding on baby formula was the best I could do with the knowledge I have, and I feel great about it.

The point of all of this is; sometimes you can't be perfect. In fact, there will many times that you'll have to make compromises. Some of them will be big and some small. The consequences will be that you will either back-track and realize that it was a poor compromise, or the world will keep turning and no one will be worse for it. The whole journey of working toward a healthier way of life is trial and error, a point I can not stress enough.

The Consequences

So far the biggest draw back to the formula is that reflux has returned. However, it may be the amount of food she is eating as well, since she was not getting enough before. I have put her back on Zantac to see what happens. Trial and error, people.

The pro list is far longer. She has a ton more energy, which means she is much happier. Where meal times were riddled with anxiety, they are now times of practicing signs and clapping. She isn't afraid she'll starve between bites, and that is so lovely to see. She also has made progress toward crawling, though she's only gone backwards. There are now naps and wonderful nighttime sleeping. She has also gained over a half pound. Daddy is probably the most happy because we can be in the same room while he tends to her. Usually she is frantic about being in my arms...but I'm still her favorite!

Friday, January 25, 2013

Friday Quick Takes

--- 1 ---
Good Day! Yesterday Mariana weighed a grand total of 14 lbs., which was .5 less than on Monday. To this I say; Babyhood: You're doing it wrong. I knew there was a problem, but now we are on a course to rectify her incredible metabolism and my poor under-performance in the lactation department. I have a post in the hopper for Molly Monday about it, because, to exactly no one's surprise, I find formula abhorrent. Two things I'll give you before Monday: She is getting formula and I am thrilled. Hahahahaha! I'm so confusing.
--- 2 ---
On the next quick take I am going to talk about running. This might annoy you. Please just know that I realize people talking incessantly about their hobbies can be annoying. I get it. However, running will only factor partially into the story. Minimally, actually. It's okay, you'll survive.
--- 3 ---
This morning I went running. I have no cold-weather running gear that fits, other than my shoes. I do have a jacket that I really like for running, but do to some of my current assets, my spare tire (because the term "muffin top" just makes me prejudice against muffins) in particular, causes said jacket to ride up. Sometimes my shirt joins the trip and I find that I am running with a bit of exposed butter. I refuse to get a new jacket because I actually like that my jacket doesn't fit...yet. The reason is that one day that jacket will fit again, and that day will be much sweeter because I know how uncomfortable that jacket is now.

And that is how I feel like my relationship with Christ goes too.  Sometimes life circumstances get the better of my attention and I go through the motions of staying in touch with Jesus while not really paying attention to who he is. When I realize this, I find it uncomfortable and awkward to talk with him.  Instead of trying to make my idea of Jesus change, ie; buy a new jacket, I struggle through the awkwardness to conform myself to being a person who accepts Christ for who he is. Right now it is awkward between us because I forget how to be silent and just sit in his presence. Going to mass alone is disconcerting and I don't know how to focus because I am used to being distracted. If I don't find time for silence and contemplation or going to mass alone once in a while, I forget who Jesus really is. I forget how to listen to him. I forget how to be comforted by him. I am trying to conform to my favorite jacket and I'm trying to conform to who Christ really is. Pardon me if my imperfections show a bit on the journey.

I have been feeling guilty about not having enough time to get everything done. The problem is that I can know that there is nothing to be done about my lack of time, yet because I have to live with the consequences, I find there are major problems to accepting this fact of life. Yesterday at the pediatrician the Nurse Practitioner was giving me my tasks and the thought to smack her in the face occurred to me. It wasn't her, it was the information. I wanted to smack the information. At this point Mae requires a neb treatment 4 times a day, ear drops 4 times a day, a formula supplement to each feeding, breast feeding, one juice bottle and 2 meals that have a half avocado mixed in each. That is one kid alone. Don't even factor the other kids nutritional needs, the basics of housekeeping and the fact that if I don't sleep I could well get in a car accident. 

The first person to suggest I hire help gets it.

--- 5 ---
I'm actually a very happy person today. I know it seems like my quick takes are all complaints, but I feel pretty good about life. But when you come over, have pity on me. I'm not going to mop before you get here, okay?
--- 6 ---
I don't have anything else to say after #4 because now I'm feeling judged by everyone for making time to blog when I just complained there aren't enough hours in the day. Heh.
--- 7 ---
Today is the March for Life, and I agree with our president.

For more Quick Takes, visit Conversion Diary!

Tuesday, January 22, 2013


I've spent all day thinking about it, so I might as well write it. Today is the 40th anniversary of the Roe v. Wade decision.

Some of my friends are celebrating this. They think of the poor, frightened and lonely women who face the consequences of carrying a baby to term, and then they think that compassion dictates these women get it behind them. Quick, little pain, and quiet. Those friends think I'm a zealot. They discard my opinion because I am personally offended that my mother was asked to have an abortion with me.

They are wrong.

I am offended by abortion for many reasons, but the biggest reason is because of the lies it tells:

Abortion says we are too weak and alone. It preys upon our gravest fears of loneliness and inadequacy. It tells women they can not possibly be expected to bear the burden of a child, so why not "take care of it" before it's too big or too human? Abortion whispers into the soul that it can be over quickly and never thought of again. Ask someone who had an abortion how old her child would be. She knows, she'll never forget.

Abortion says that those who are anti abortion only care about the unborn, but will abandon the born and those tasked with raising him. The truth is that every single crisis pregnancy clinic I've donated to has had many resources for women to get food, clothing and shelter for herself and her child. I've never heard or seen a pro-life person be unwilling to provide help after the baby is born. I heard the lie plenty of times, but not one example the lie is true.

Abortion says that it is the compassion choice for babies deemed "incompatible with life." The truth is many of those babies live, many of those babies die, but their mothers and fathers do not deserve to add their own hand in the death of their child. To ask parents to consent to the death of their child is evil. The death of a child is difficult enough. Our hearts create a special place to love that child, and when the child's body ceases to be present, we are left with love and no body. It is the worst kind of emptiness and should never be compounded with guilt.

Abortion says that Mariana should be dead. Time and time again the press releases a joyful article about the prevention of Down syndrome births. Prevention is code for abortion. Yes, there is joy in the world that children are being prevented from being born because they will sully our perfect utopia where only the pretty and intelligent get to exist. Who needs tolerance when we are all the same kind of different?

Abortion says men don't matter. It's a woman's choice after all. Yes, we live in a world where a literal sperm donor is sued for child support, but a man in a relationship has no say over his child's life until birth. Men are useful idiots, both responsible for all the evils in the world, yet powerless over the future.

Abortion tells too many lies to recount.

My pro-choice friends might not read this particular post. I'm not sure it would change their view anyway. But if any do, I'd love to hear from them exactly how abortion honors the dignity of a woman. It tells her a baby is a disease unless she wants it, that she's too weak to bear responsibility for her choices, and that she needs to consent to an invasive procedure to be equal with a man. In short, abortion not only lies, but is a misogynist as well. What exactly is the appeal?

Monday, January 21, 2013

Molly Monday

Okay, I skipped a lot of posts I've been meaning to write. If I go to hell, at least my road will be well paved. But on to Molly Monday!

We were supposed to test Molly on quinoa this past week, but I feel iffy about it. I really don't want to upset the apple cart, but similarly I'd like to try new things. I'll let you know if I bite the bullet this week or not.

Anyway, I've had plenty of questions from people regarding diet, and I find I tend to overwhelm people with all the "NO's!" in our world. I understand how that can be because the world is so full of products we are used to buying, and saying no to all of that seems extreme and restrictive beyond reason. So, I decided to give you just a little advice on how to start your adventure.

Let me see, where to begin. How about don't panic. Starting a new way of eating is going to freak you out. Why? Because you have to change your routine, and nothing is harder than changing habits. I know, I stopped sucking my thumb at age 10, and only did so when my dad told me I could start wearing makeup 2 years after I stopped. And the moral of that story is: Motive matters! So, as it was with us, I was dragging my family and myself kicking and screaming into being radical eaters. (Radical, because it's so different, not because we are standing up on a mountain waiting for the food gods to smite those who pull into a Subway.)  Molly would improve and then break out with a series of symptoms that I knew in my bones was food related, but felt ill equipped, either by my ignorance or my budget, to handle. So if you getting a feeling that your kid or kids or husband or yourself need to address some mystery symptoms, and you think food might just be the source. This is how I would start if I were starting all over.

1. A good source of probiotics. This is going to be key, and I personally don't trust shelf-stable probiotics. Also, any supplement you take ought to be a high quality supplement, or it's just not worth the money.

2. Go gluten free, but not by incorporating gluten free breads and cookies and garbage. Gluten intolerance is growing by leaps and bounds, and it's not just a general hypochondria. Going gluten free is a good opportunity to clean out some bad snacking habits you've developed by reaching for a packaged snack rather than an apple. I'm not saying you should never eat anything processed forever and ever amen, I'm saying you have this unique opportunity to change your habit of reaching for something that has many ingredients, most of which are not food to a habit of reaching for something simple and natural. (Here's a good interview with the author of Wheat Belly.)

3. Next you can start buying better quality ingredients. This is a big step if you are more motivated by price than anything else. If you are overwhelmed by going totally organic, try going organic for just the dirty dozen. Try incorporating one meal a week with pastured beef or chicken.

4.  Get yourself an attitude adjustment! This is an experiment, which means you don't know what the outcome will be. Be curious and adventurous rather than anxious and doubtful. Why doubt what you don't know yet?

5. Don't judge other people's eating habits. This is more for your friends and family than you. I know a lot of people change the way they eat and then spout off about processed foods like it's a character flaw to eat Ritz crackers. In fact, most of the push back you will get is from people being defensive. Many times someone makes a change or takes up something new they get excited and become a zealot, which more often than not, turns others off. If your friends and family hear you repeat that you are doing this as an experiment, or that you are excited about some results, they'll show interest as long as you don't start on the "You should..." statements. You go there and they'll stop asking.

Okay, I think that's a good first set of steps, hope it goes well for you all!

Monday, January 14, 2013

Molly Monday

I have mentioned, more than once, that we follow a pretty strict diet because of Molly. I have had many people request details, which I have avoided giving publicly because I get angsty about sharing too much of my kids' lives. After, all, their privacy belongs to them and I have to respect that I am raising adults, and hopefully not narcissistic ones. But time and time again I run up against this need from other people to know where to start. So, on Mondays that I post, I will dedicate space for Molly's special needs, since diet isn't all that private and embarrassing.

A little background...
Molly was a very hard baby, though I didn't really feel put-upon by her because I had a very good routine. She did not take a bottle for 7 months, was difficult to feed solids and had a "cold" since she was 3 weeks old. When she started solids she got eczema, mostly behind her knees, on her feet and on her hands where she sucked her thumb. She would not keep socks on because they bothered her feet so badly. At one point I sat down with the doctor and pretty much ranted about the fact that, no, my baby hasn't had a cold since birth, and you need to tell me why she is so snotty all the time. The answer she gave was reflux, and the zantac did work, so I went on my merry way.

But the eczema was so bad that I again asked the doctor for help. Her response was cortizone cream. I am not opposed to medication. I am grateful for modern medicine. It saves many lives every day. However, I, in my limited understanding of medicine, knew that steroid cream for a baby might not be a good idea as the first line of defense, especially when said baby has a chronic condition. But I tried the cream, and she broke out with hives. So she was diagnosed with "contact dermatitis".

From Wikipedia: Contact dermatitis is a term for a skin reaction (dermatitis) resulting from exposure to allergens (allergic contact dermatitis) or irritants (irritant contact dermatitis). Phototoxic dermatitis occurs when the allergen or irritant is activated by sunlight.

This was the tipping point. I have not gone into great detail about my discussions with the pediatrician, but believe me when I tell you that I felt utterly disgusted with the doctor by the time Molly was one. We did our best, but it was a lot of trial and a whole lot of error. I knew, in that sixth sense sort-of way, that Molly's problem was dietary. She hated all formula, and when she abruptly stopped nursing at 8 months, we had to give her goat's milk. To this day I cannot stand the smell or taste of any goat or sheep food product because of the smell of Molly's spit up and diapers.

We did elimination diets, vegetarian diets, organic diets. Sometime during that second year Paul was born and Scott lost his job. Molly's issues were put on the back burner, but we did do the best we could with the little we understood. It was a chiropractor that I was seeing for my shoulder who finally pointed us in the right direction. He wasn't 100% correct, but he did say that she had an low functioning adrenal glad and to put her on a low Omega 6 diet while upping her Omega 3s. Through that advice we cut out all grains including corn. We began to care about where our food comes from. We learned to decode labels and find out what the animals we ate were eating themselves. Corn, as it turns out, was the biggest offender. Corn is in seemingly every thing. Chickens and cows are fed corn, and that mattered to Molly.

Oh, and we tried to be "balanced", which is code for not diligent. We'd tell family members not to worry about what Molly needed. She could have an "off" day as long as she at mostly good foods. We would go out to eat and feed Molly the best we could, and sometimes we'd let her have a cookie or "unsafe" ice cream. And Molly would whine about being achy or that her tummy hurt or she was tired. We'd roll our eyes because Molly's always been a bit whiny and lazy.

But then something rather miraculous happened. My sister called me. (No, that isn't a miracle!) She complained about her daughter's skin irritations and belly aches and she just needed to know what to do, not a big long list of "NO". M began to change the way they ate, and she discovered her daughter didn't have belly aches or as many episodes of asthma. She also discovered E was far more friendly and outgoing than before and a lot more compliant. Once E didn't feel like crap every day, her lovely personality shone so brightly almost everyone remarked on it. But the miracle for Molly was something M discovered through E. One day they were running and E complained about feeling tired and slow. M, stupidly, but not really because it worked out okay, Googled E's symptoms. She found a vitamin B deficiency accounted for all of E's complaints and started her one one immediately. The description E gave sounded like Molly's whole personality, so I started Molly on a supplement. Wouldn't you know it, Molly blossomed. She is far more active than ever, far more compliant than ever, and she is learning so well at school. We've really been blessed with finding more people who are experiencing all sorts of wonderful results with changing the family diet. They are all a huge resources for us.

We also did a modified GAPS elimination with her. Because she didn't exhibit any autistic or ADHD symptoms, I was concerned about jumping full into a fasting type of program. What we have found is "cheating" cheats Molly. So we are now totally corn and gluten free. The other kids eat rice, but we don't go crazy with it. Our food comes from reputable sources and our animal products are from pastured animals who get exercise. Healthy animals = healthy food. We also do meatless Fridays, and I've noticed I feel a lot better after starting that.

So I will try to build on this post with recipes and experiences and I will also be open to answering any questions about dietary needs. I'm not an expert, but I do have a lot of experience. If you wonder where to start, I'd go with Real Food Freaks and GAPS and Wellness Mama. I'd also go with your observations and be merciful with yourself. It'll go a long way in keeping you sane!

Friday, January 11, 2013

It's Friday!

--- 1 ---
I made a New Year resolution, though it's not a tough one, I have a feeling I'll find a lot of stumbling blocks to accomplishing it. Also, I'm not telly you what it is. Not for any fear of failure, but because it's a spiritual goal and I don't want to accomplish it only because I posted it all over the interwebs, you know? 
--- 2 ---
Report cards came home this week. It was a little anti-climatic for Kate because the school posts the grades for 3rd grade and up. Obviously that is a good thing, especially if you need to give your child incentive to pull a grade up. Charlotte did well. Not much to say about the big kids. School is old hat to them,  and they both do well.

The littles, Paul and Molly, don't even register what a report card is. Molly failed knowing her address, which is fair because we just moved. Paul failed hopping on one foot, so I asked him to show me how he hops on one foot. The results were hilarious. Oh my, I wish I could have had video!
(No, they don't give little kids "F" grades, but each school has a different system of number or letter grades for littles, so "failed" is a good way to tell you they got the lowest score possible.)
--- 3 ---
I'm  living in a crazy person's house. Unfortunately, I am that crazy person. I have been painting like mad, only the painting is of sample colors. Our kitchen and living room is one great space with walls that are under different lighting. So, I have to paint my samples on each wall to be sure I like the color. I have had one massive fail and one success and one that I like, but I'm going to use in the two front rooms. I also chose a back splash, but not a color for the t.v. room, or the bathrooms upstairs. I also think I know what tile I want for the wall around my bathtub, which means I'll lose sleep over it until I buy all the supplies. 1st world problems, yo.
--- 4 ---
Here's the update you all come here for. Mariana is doing better. I can tell her comprehension of my words and her ability to respond is getting better. Her gears move a lot slower than other babies, so giving her time to process what is expected is key. I've noticed when strangers stop and talk to her she gives them this really dumb look for about fifteen seconds, but if they stick around long enough she will light up with a smile and do her two-armed flappy wave. Now Mrs. J came back Wednesday and showed me how to teach Mae the crawling motions of left/right coordinating movements. She warned me that it's a sweaty workout for mom, only Mariana tolerates it for about two feet, and then just lies down. It's how she deals with stress. The sum total is that I am seeing progress, but I have to give Mariana time to show me. A difficult thing for a busy person, but I've had a lot of things pointing to the need for me to slow down the pace of life, this just adds to the evidence.
--- 5 ---
I'm running again. You know this picture?


Well, I feel like the lower picture. My sister, Kate, is virtual-training me by sending me spreadsheets of my plan, while I text her the results of my runs and walks. It keeps me accountable, which is good because there are a lot of reasons not to leave the house. On Friday's I have to run with the jogger, which is not my favorite thing to do. That said, I'm enjoying myself 60% of the time, so that's nice. 
--- 6 ---
I am getting very excited for Mariana's first birthday, which is a mere two months away. Can you believe that? I'm rolling a post around about that wonderful day. I still look back and feel so glad that I never had that grief for something lost. It's a true grace to hear news like that and feel comfortable with it. I spent a lot of time during my pregnancy feeling uneasy and as soon as I heard she may have Down syndrome I felt relief. Not the usual response to such a diagnosis and I still praise God for it.
--- 7 ---
Has anyone heard of Ryan Freel? He was a close friend of our next door neighbor, B. I was chatting with him when he told me Ryan committed suicide leaving 3 daughters and his wife. I could tell that B is messed up by the whole thing, who wouldn't be? It's a terrible thing to lose someone like that and I know B wants so badly to make sense of it all, which won't happen in this life. Ryan had a lot of problems, and his brain is going to be studied because he had so many concussions and suffered from mood disorders.  The point is, of course, to ask for prayers for B and Ryan's family. It's hard to see a grown man feel so lost like B did when talking about Ryan. I know it's going to take a long time for him to get used to carrying this pain.
For more Quick Takes, visit Conversion Diary!

Tuesday, January 8, 2013

What Following Christ has Taught Me about Being a Parent

Today I read the gospel reading for mass. It was the loaves and fishes reading out of Mark. (Mk 6:34-44) Many things struck me at once, much like a wave overcoming you and then washing over you in the ocean. "This is what I need to be doing!" It was an epiphany, perhaps in keep with Sunday's feast.

First I have to tell you a bad habit I'd gotten into. When overwhelmed I wouldn't become angry or frustrated that I had so much on my plate, I'd get frustrated that I was inadequate to handle it. I hear people say, "God never gives you more than you can handle." and this phrase makes me so angry.
1. I don't believe God causes tradgedy and thus does not "give" us heartache; and
2. Yes, sometimes life IS more than we can handle and it is God Himself who gives us the grace and the resources to work through it.
So my frustration was not so much that God allowed difficult things in my life to all hit at once, but that it seemed that God was NOT giving me the grace to work through it. I'd lose my temper at the kids and blame God, I'd get no sleep and be rude to my sick husband and blame God. Mariana wouldn't cooperate and I would feel so upset and helpless and blame God I wasn't able to be more pragmatic. 

And then I read this reading.

There are so many depth to be explored in this reading, but what struck me this morning was this; the disciples seemed really annoyed  when Jesus asked them to feed the crowd. Jesus told them to bring what they had, and from there he blessed what they did have and it was MORE THAN ENOUGH. (I also get totally distracted sometimes and wonder what they did with those 12 baskets of left overs. It's the mom in me.)

What does this have to do with me? Sometimes I realize how I'm feeling before I react. Sometimes, many times actually, I act out of frustrations even after noticing, "Uh, I'm sooo frustrated!" And it is those times, those exact times when it seems like I have 5,000 to care for, when I must stop and say, "Lord, all I have is one more minute of patience left, but here, you can have it."

What I know from experience is that 15 or 30 seconds into it I will be inspired on what to do. Sometimes I think, "I'm just going to play a bored game with these kids to get them to settle." Sometimes I think to give them each a task and a reward if they complete the task in a given time. Sometimes I realize the particularly troublesome kid woke up after breakfast and hadn't eaten yet. Yes, God just takes that last drop of patience and he extends it, inspires me on what I must focus, and gives me the grace to focus on just what is in front of me rather than the whole To Do list.

The key, of course, is to be a disciple and bring him what you do have, little and insignificant though it may be, and let Him bless it and multiply it. All you and I have to do is distribute it. I will bet we have some left over to get the rest of our tasks accomplished. 12 baskets of laundry perhaps?

Sunday, January 6, 2013

What Having a Child with Down Syndrome Has Taught Me About Following Christ

Thank God the Christmas season is almost over. I nearly died. Mae, Charlotte, Paul and Scott were hit with the flu. I am not a good nurse for very long. While I don't think I should be exempt from suffering, ever, I do get rather irritated with God at not making me better at it. Near the end of this ordeal I began to come unglued and have those, "EVERYTHING IS TERRIBLE, SO WHY DO I EVEN TRY?!" thoughts. And boy did I have some wonderful focal points this time around.

You see, Mariana isn't talking. What I mean is, I have been assured and reassured that she has all the tools to talk. She says, "Mama", she can sign "milk", "please" and "eat". But she gets mad when I ask her to sign, especially where food is involved. And since her weight has been a problem my resolve has also been a problem. Kid gotta eat. She also happens to be stubborn.

The other thing that was disturbing me is that even during play she didn't seem to understand how to copy me. For example, when the others were babies I would go, "Ah!" and they would go, "Ah!" and we'd copy each other as a game. Mae wasn't getting the game. Even when I included the other kids. She's just smile and think we were being very funny.

The developmental specialist, Mrs. J., came on Wednesday. When I told her about what was bothering me she reminded me that I have to draw the line with Mariana. I MUST require her to make requests, so rather than put it around food, do it for play. Make her sign "more" if she wants me to repeat an action. Have her show me "please" and "all done". Force the issue. Repeat, repeat, repeat. Because her lack of doing what she must do is a combination of slow cognition and stubbornness. She needs more repetition than my other babies and she IS slower to understand. And then she handed me a bitter pill and told me to swallow it.

So, what does this have to do with following Christ? Well, take a look at the world around us. We hate discipline and we love achievement. We want to have all the food we want, but we don't want to get sick or fat or feel crummy. We want to drink all the coffee we want, but we don't want to have sleepless nights.We want to have all the sex we want, but we don't want all the babies, possible diseases (from multiple partners) or emotional baggage that comes with it. As Mariana's mom, I wanted the achievement with as little work as possible. Clearly I suffer from the being a human.

But there was a bigger issue I noticed in myself as reflected by my meeting with Mrs. J. I look at the violent, sexualized, sensually driven society, and my response is to circle the wagons on my own family. I find myself turning in instead of out, of hiding my views and beliefs instead of engaging (respectfully) in philosophical arguments. I don't want the headache or judgement or frustration to be in my life, so I ignore those who make statements that fly in the face of my dearly held, well thought-out beliefs. After hearing Mrs. J. tell me, "Force the issue, Repeat, repeat, repeat. Be resourceful. If one circumstance is bad timing, then cultivate good timing. You can not stop working because one day she will get it.", I realized that this is true with my community. I have to stand up and say that it is a bad idea to be more permissive. That a permissive culture is not the same as a righteous culture. I have to stand up and say that God is my God, not wealth, political party or gender. I have to stop misconstruing permissiveness as compassion, something our society does all the time.

I'm not certain if my blog is the place I'll be forcing the issues. Maybe it will, maybe it will continue to be the place where I just talk about what it is like to have a child with Down syndrome. (There is that timing issue.) I know that I will behave differently in my public life. Mariana may not ever do certain things. I will still have to try to teach her. I may feel like banging my head against the wall, but I will still have to persevere. Just as I must continue to teach Mae with love and resolve, so I must stand for Christ. Perhaps it will be just the thing that allows me to hear those glorious words, "Well done, my good and faithful servant."