Wednesday, December 26, 2012

The Christmas Letter

Yes, I officially claim defeat on the Christmas card/letter. Tough. Here's the run-down of the Life of Fry.

Merry Christmas!
And I mean that sincerely. Because it's been a tough year, no? We had a baby, via c-section, which was terrible (the section, not the baby.) The baby, one Mariana Lynn, was born with Down syndrome and has since spent life defying odds, exhibiting stubbornness and illustrating the fact that "special needs" is a term that applies to everybody in the world.

Kate the Great received her First Holy Communion, went on a trip with Grandma and finally has lost all the "tooth fairy" teeth, which everyone knows are the non-molars. She's doing well in school with a little encouragement, sometimes a lot of encouragement, and she has quit guitar because she was "burnt out". Yep, my 8 year old claimed to be burnt out. Rather than argue with her I just welcomed her to the club of "Much Too Young to be This Damn Old". Lo and behold the child misses guitar lessons. Because I use all advantages, I'm making her earn them. Heh.

Charlotte was front-toothless for many many months and finally has one and a half front teeth. She rocked 1st grade and is really working hard in 2nd. She has had 100% 7 times in a row in spelling and I'm running out of bribes, I mean rewards. Luckily she thinks things like feeding the baby her solids are privileges. God bless the naive. Charlotte also made her First Reconcilliation, which nearly gave her an ulcer. She's been a true gem, which she admitted was because she doesn't want to have too many sins to tell the priest. She's a keeper.

Molly graduated from PreK, and I spent the summer worried that Mrs. Robinson was the only teacher that could handle her particular self. Over the summer she and I and the baby went to Houston. She is such a fun companion! Kindergarten came and Molly's teacher couldn't be better. Molly's reading very well. Her clean diet seems to help her attitude and energy and she's a little more compliant which is a lot of help. We do have bad days, but alas, we all have bad days, don't we? She and Paul are currently fighting constantly and spend a lot of time in separate corners. Scott and I spend a lot of time thanking God for separate corners.

Paul is now (FINALLY) four. This year he has grown up so much! He has some boy buddies with whom he can wrestle, fight and be a boy with. This is good for all of us in the house. He adores his baby sister and she helps ground him when he is particularly wild. He still wakes up grouchy, but he and Daddy are working on that. The good news is that he adores his teacher, the bad news is that he never wants to come home from school. The term "Mama's Boy" does not apply to him.

Mariana was born, baptized and has been spending the year nursing and ignoring the experts. She loves to eat, says, "Mama" and signs "milk, please" and "eat". The goal is 10 words by a year. I'm shooting for 15 only because I have a motivated student. The crawling thing is not really working well, but I'm hopeful she'll get going by mid-January. She does not like to do anything she perceives as work, and she's stubborn. In other words, she's like her mama.

Scott and I bought a new house, moved in October 20th, and proceeded to be exhausted the rest of the year. It's been one of those years where the unexpected is a constant factor in our lives. Luckily God has never let us down, and answered many many prayers, some that we never thought to express in words. Every breath we take has been a gift, and we are so very grateful.

Merry Christmas and Happy New Year!
The Frymans

Wednesday, December 19, 2012

Pink Candles

This past Sunday was Gaudete Sunday, or "Pink Candle Sunday" if you are one of my kids. Rejoice. Fat chance, right? 

This was a weekend that our children could do no wrong. Waking up in the middle of the night with Molly snuggled up against me brought no irritation. I scooped her closer to me and rested better with her body near to mine. That body, it is so beautiful. Her milky skin and freckle dappled face, her pink lips and pointy chin and merry eyes all bring such joy to us. What would I do without that body? I would still love her, wholly as always. How could I live without the heat of her back against me, the feel of her delicate fingers stroking my face as she does, the scent of her hair and breath?

Understandably many people are outraged and angry. I suppose if I dug deep enough I could get pretty angry too. It's not so much the Sandy Hook horror that makes me angry. That just makes me sad, deeply inconsolably sad. It's more of the political opportunism of left and right, atheist and theist, etc. Can we not take a few days to just have broken hearts, to just hold one another tighter, smile at our kids' naughty antics and try our very best not to let our pain dribble over into irritation at the innocent? But I refuse to get too worked up about those things. 

I could get pretty angry about this too. Here is a man, who is well respected, openly advocating for the forcible murder of babies he deems too much of a drain on society. I could get pretty furious that there are people willing to vote for him in spite of this, since they refuse to be a "one issue voter". Or that there are many who, in the recesses of their hearts, agree with this utilitarian eugenicist. Yes, I could be very angry about that.

There are many things in daily life that frustrate me so much I could muster up some serious rage. Kids getting sick at the worst possible time, a child who I can not seem to get to nap properly, the time that slips away when I should be preparing for the upcoming school break and Christmas holiday. All of these things can build and build and build until....KABOOM! Mommy's on a rampage through the house listing all of the things that are wrong in the house, the neighborhood, the city, the country and the world. STOMP STOMP STOMP SLAM!

Instead I'd like to share my prayer these days:
Lord, give me peace and joy this season, but if I cannot have it, give me a peaceful and joyful face, voice and body. Let my heart suffer in silence while my body becomes a vehicle for the peace and joy you wish to share with the world. 

Or in the case of an emergency: God help me fake it.

Yesterday I heard of one of the children of Sandy Hook being buried in his favorite jersey. I thought of Paul and if I had to bury him I would not put him in "button pants" (pants that are not elastic).  He hates button pants. I do not wish to live in a world where I consider, even for a moment, what my child would want to wear in his casket.

St. Therese wrote of living life "The Little Way". St Therese translated “the little way” in terms of a commitment to the tasks and to the people we meet in our everyday lives. Meaning that we, in each moment of our lives have the opportunity to act with purpose, consideration and kindness. If we see our jerky kid left his stupid socks next to the couch last night, we don't blast him either aloud or under our breath. We pick up his socks and say nothing or, if you've really perfected it, say a blessing for him.* We wake and get busy about the tasks in our lives happily rather than grudgingly, and yes, that means dealing with school traffic with patience. The "little way" has a way of becoming bigger and bigger in our lives and transforms us into saints.

I think starting small is the best way to keep the devil in check. I'm sure he is dancing victoriously over the vitriol that has spilled over from the tragedy, as I'm sure he danced with delight at the moment of the tragedy. I quit this game. I'm saying no to the anger and vitriol and petulance. I'm going to let myself be sad, let myself hurt and pray I can be a beacon of comfort and joy for those who need it. While I grieve for all the loss this past Friday, I will light a candle in my heart for the deceased. But it will be pink, if just to win one for God. Gaudete indeed.

Gaudete in Domino semper
iterum dico gaudete.

Friday, December 14, 2012

2nd week of Advent

--- 1 ---
Many many things of note have happened this week. Let us begin with Sunday, when our dear friends let us keep 5 out of 6 of their children. Two of the kids are Paul's age range, are boys and give him someone to wrestle and box. It is lovely when I am not the one being punched and the person who is thinks it's a fun game. There also is a two year old boy, and there are twins, all of whom are perfect and wonderful. Even though that is the case, I still can't remember why I thought it was a good idea to put together bookshelves that day. Needless to say, the shelves are not done.
--- 2 ---
Scott's mom came into town on Monday to celebrate Paul's 4th birthday (which was on Tuesday, but that was a busy enough day!) True story, I can't remember what we ate for dinner. Oh, wait, pot roast. Scott took the day off work because I'd been grappling with a virus, and we had a really lovely day. I made grain-free pumpkin bread with a pumpkin spice whipped cream frosting. All was delicious and well received by the kids. 
--- 3 ---
Tuesday things got crazy. Once again, I hardly remember the morning, but I do know I had quite a few things to do. That said, I was able to drop Mariana off with our friends, the ones whose children came to our house, and take Paul and some buddies to Wreck-it Ralph. Unfortunately one of his buddies got the business from his mom for some potty humor right before we left, and Wreck-it Ralph has quite a bit of that. Oops.

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

That night was a normal night, only Paul got to snuff the Advent candles -it wasn't his turn- and he had a few gifts to open.
--- 4 ---
Wednesday may take a while. Mae had her Developmental specialist meeting and met with her new OT. Luckily it was at our house. We have had it made clear to us that keep Mae slightly quarantined is our primary obligation this winter. I will get into that later.

The basic run down of Mae's assessment is that she is doing very well. Her gross motor is on target, though she is low tone in her upper body, it is only partial. We must keep working on crawling, but her gross motor is good. Her fine motor is also on target, but we must work on her pincer grasp, and her sign language. Most of the feedback was to keep up our work with her because she is close to on target.
--- 5 ---
Mae's 9 month check up was Thursday. This is where I lose it. She is 15lbs, so she gained 11oz in a month. Yay! The pediatrician did say she wasn't too freaked out by that plateau earlier because it looks like a normal curve. Most babies plateau around 8 months because they are more active, and since our OT has upped a bit, the doc wasn't freaked out now that she's gaining again.

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

I am scared to be happy. Predicting the future is not my favorite game. I am happy she is progressing and beginning clear communication, but there are a million and one What-ifs. I do not want to put too much into this report lest I get caught up in fooling myself that Mae is "just fine". She needs our help with everything, we can't leave her to develop on her own. That said, it is lovely to have all of our hard work pay off in the form of impressing the professionals
--- 6 ---
GI update: Clear x-ray! No indication of a physiological reason for her issues, and prune juice is keeping things moving. HURRAY FOR PRUNE JUICE!

Our ped told us that the flu season is practically killing her practice with overtime. She was very firm about keeping Mariana protected, which reiterated what the GI doctor had said. We are to stay away from malls (no Santa photo!) and keep a strict hygiene routine. We cannot travel, we cannot host travelers. Boo hiss.
--- 7 ---
Now the REALLYbad news. So all three pros (Doc, Developmental specialist, OT) stated that children with Down syndrome tend to have a stubborn streak that beats all. This has been witness by me in Mariana's refusal to do OT many times, and her refusal to sign what she can. And it is clear refusal, not confusion. We are facing some bedtime issues with this one, and my tenderness toward her condition does her no favors. Pray I get through this. I know she'll be fine, but my nerves are frayed as it is. And to think, I'm the militant mama in my family!
For more Quick Takes, visit Conversion Diary!

Friday, December 7, 2012

--- 1 ---
BUSY LIFE! I can't tell you how many things we have going on, so here is a fast rundown. You no like? Sorry! Advent is a time of penance.
--- 2 ---
Mae will be visiting with a developmental specialist once a week. She's 9 months now, and we really need to stay on top of oral-motor, gross motor, and fine motor skills.
--- 3 ---
Mariana had her GI test. Waiting upon results, praying there will be no biopsy needed. I remember that time when I swore my life as a mom wouldn't revolve around poop. Once again, God loves me enough to constantly teach me humility.
--- 4 ---
Diet changes have revolutionized our family. Molly is doing amazingly well. We've even cut her vitamin B supplement out with no ill effects. This is the greatest blessing to our family, even if our grocery bill is obscene. Praise God!
--- 5 ---
Speaking of dietary changes, have you tried coconut oil yet? It really is a wonderful product, from skincare to medicinal purposes to a yummy way to cook shrimp. And before you knock using it on your face, try it. AMAZING
--- 6 ---
Christmas is amazing. I love Christmas. But advent is my favorite church season, I think. I love the darkness of it, with the small light from the advent wreath. Advent doesn't get enough credit. Listen to this and tell me I'm wrong.
--- 7 ---
Alright, I'm off to shop. Pray Mariana doesn't lick anything gross. I think she's teething. 
For more Quick Takes, visit Conversion Diary!

Monday, November 26, 2012

The R Word Remix

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

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

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

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

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

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

As for the use of "asshole", yes, you are right, that is not the Light of Christ type word. It is vulgar, and I used that word to describe the vulgar people who defend the use of the word "retard" because they don't mean it offensively to those with Down syndrome. Except it is and all the semantics in the world will not change that unless we can no longer use the word for its intended purpose. Which circles back to my original point that I do not want assholes determining the lexicon.
To sum up, I don't think the words "retard or retarded" should be banned. I think anyone who uses those words as a put down are either ignorant, or complete jerks. My faith dictates that I help instruct the ignorant and love the jerks. I can do that, but I might accidentally call a jerk an asshole on occasion. Please forgive my vulgar mama bear moments.

Thursday, November 8, 2012

Post Election Awesome

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

Yelch, I'm punchy today.

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

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

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

Crap-Gotta go, see below....

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

Tuesday, November 6, 2012

October- The Revaluation

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

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

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

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

Friday, October 12, 2012

7 Quick Takes

--- 1 ---
I hate "Whatever Awareness", or rather I did. I never saw the point. I thought, "How about forgoing awareness and putting that money into actual aid to those suffering?" Now I'm on the awareness bandwagon. Because people need to know you won't die from having a baby with Down syndrome and that making decisions out of fear is really just a good way to cheat yourself from a fulfilling life. And that's just Down syndrome. There are a lot of things we all need to grab our attention. So, be aware, be very aware!
--- 2 ---
Lately I've really taken account of my appearance. It really started when I was describing to my kids about the connection between the body and the soul. And I realized, while there is a time to let vanity go, there is also the need to retain a sense of self and glory in your outward appearance. If you are ashamed of your appearance you are not going to be fully yourself. So I am taking small steps to reclaim my appearance. My hair appointment is next week. It seems like vanity, but it is deeper than that. I must feel whole to be holy, and part of that is feeling worthy of time and attention. Lately everything else comes first, and that's okay. It just can't last. And let's be real, I'm not shooting for gorgeous, just pleasant.

--- 3 ---
We live in an increasingly disordered world and I'm flipping tired of it. Weekends of football on T.V. all day long are no longer the norm around here. For the last 5 years we've needed, yes needed, TiVo in order to watch anything on television, including football during the day. Why? Because executives seem to think it appropriate to air commercials for horror movies during the day, during "family viewing". This, my friends, is utterly disrespectful.

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

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

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

So, stop it you dumb advertisers. I don't want to see any more gore or sex during the weekends. I want to be able to turn on the football game and walk out of the room without having to pause. I want to drive down the highway without 9 foot women baring their goodies. And I have no interest, and never have had an interest in teaching my baby to read!
--- 4 ---
Sorry about that last rant, but not really. Back to my fabulous life with Mae. She is cracking me up/making me crazy. She still won't nap in her bed, but in the exer-saucer/jumper toy? 2 solid hours. Though, in her defense, when she was startled awake by her brother screaming, "MARIANA IS SLEEPING." right by her ear, she was able to bounce herself back to sleep. So, that's something.
--- 5 ---
We are closing on the house next Friday. Fear and loathing about the upcoming move is threatening to take the fun out of this adventure. Also? the punch list. It is no fun to go through your dream house pointing out all the flaws. In my fantasy world I would sit the builder down and explain, "This is my dream house. You have eyes, so you go through and fix all the problems, make it perfect and quit ruining my fun." And then he does it. As I said, my fantasy.
--- 6 ---
This weather is the bomb. It's cool in the morning, warm during the day and cool at night. It smells like fall, but doesn't require many added layers. The children can play outside all day, and then come in smelling like clean air. The windows were open all day yesterday. If I could, I would hug this weather.
--- 7 ---
In honor of DS awareness month, here is a shout-out to my husband. I have received a lot of complements on how well I am doing with Mae's diagnosis. One friend asked, "Don't you feel chosen?" as in, favored by God. I must admit the question bewildered me because while I have always seen our girl as the best gift from heaven, I never ever thought it was because God thought I was anything great. It's more like I saw God as the teacher who sees a kid not living up to his potential and giving him cool extra projects so that he does better all around. Or put another way, God was saying, "You can do better Barbara, here's your chance."
But my husband I see differently. If ever I thought Mariana was a reward for goodness, it would be be because he earned it. Scott's the most unselfish person I've ever met. And while he'd argue with me about that, I have experienced first hand the depth of his unselfishness. So, for Ds awareness, let us never forget those wonderful dads who love their babies to the ends of the earth. Three cheers for them! 
For more Quick Takes, visit Conversion Diary!

Friday, October 5, 2012

Seven Months!

--- 1 ---
My dad's birthday is October 4th. Anyone who reads this should say a prayer for him because that would make him very happy for his birthday. If you happen to be an atheist, do it anyway. It's my dad after all.
Mariana is seven months today! I know, where does that time go? She is rife with cold symptoms which may or may not be an actual cold. Two days ago it was not. I know this because we were at the doctor for a vaccine and a referral. This is just an adventure with narrow airways and small sinuses. I find the respiratory stuff overwhelming, but I think we are doing okay. In other news, she is also getting closer to sitting up! I wonder if it will be this month. I haven't looked at the developmental charts-it's a sanity thing- but it would be nice to be able to plop her down and take a picture of that fat belly! Other skills include splashing in the bath, which is ADORABLE, and possibly signing "eat". It's more of a hitting herself in the mouth motion, than a proper sign, and she does it all the time, but she also wants to eat all the time and copies me when I sign "eat." Let's just say I wouldn't be surprised if she excels in the communication department given her family. 

--- 3 ---
We are off the GI specialist in a couple weeks. What's tough is that I'm not comfortable sharing every detail of her medical issues because some day she's going to grow up. It's her life, her diagnosis. Much like I allude to Molly's food sensitivities, but don't get into detail, it seems very important I respect that Mariana may not grow up to be an over-sharer like her mother. But, you guys, my baby is crying from pain and I can't help her. Worst parental feeling ever. Pray for us both!
--- 4 ---
Molly is READING!  So, I've been slightly busy which has kept me from spending as much time as I ought on helping Molly with reading. One night, instead of reading to her, I asked her to read to me "Dick and Jane, We Look". Girlfriend is a genius! I give all the credit to her wonderful teacher Ms. P, and her aide, Mrs. S.

Molly has always been this type of kid who puts out there that she's incapable, disinterested and in need of assistance. She's very charming, but seems a bit on the slower side of the curve for her age. I had even considered holding her back a year.  But Molly also is the type that is paying attention and will just pop out a new skill like a boss. Her first words (at 17 months) were "No mine!" clear as a bell. At three, never having worked with her to write her name, I asked her to try, which she completed with a capital "M" and lower case o-l-l-y. She's going to make a great spy some day.
--- 5 ---
The older two are just the best. They are helpful, courteous, and Kate, is funny! She's pulling out all these new phrases that just seem so mature. We were watching the debate - I recorded it - and she busts out with, "The president is saying, 'Uh', a lot like you do when you are distracted." She also said that Romney seems like he knows what he wants to say and that if Obama is open to all ideas then her idea is that he lower taxes so we can give our money to who we want. Scott and I have never talked about our personal taxes with her or in front of her. This she gleaned from our discussion on the differences between those who think government should be the source of charitable giving and those who think those responsibilities should be kept on the local level. But it is hilarious that she expresses any political view at all because she was holding a book from the "Dork Diaries" series the whole time.

C, good heavens, is amazing. She soothes the baby, sweeps the floor and is still as affectionate as always. She's in a delightful phase that I am savoring.
--- 6 ---
P is a boy. He hits, he's messy and he gives the best hugs in the house. He's such a great buddy and a wonderful brother. I'm so glad he's ours!
--- 7 ---
I look terrible. I have zero time to take care of my appearance, and frankly, I'm not so interested. My brows need to be waxed, my hair needs a touch up and could use a trip to a clothing store for myself. There is a part of me that cares, but it's way low on the priority list. I hope by Christmas I care a bit more due to the photos that are bound to be taken. Remember when we were all going to be both beautiful and get all the housework done without having to tell the our kids to clean up the legos?
For more Quick Takes, visit Conversion Diary!

Monday, September 17, 2012

Saints in Scrubs

Thursday was an awful day. I probably cried 1 gallon of tears. I was terrified, and I just couldn't hold it together, which made me stress, which made me make a lot of little mistakes that seemed like the end of the world, which God decided to use to show his ever present mercy.

By the time we left for the geneticist appointment I had cried many times. Sobbed, in fact, at the prospect of facing this unknown. To say I was anxious wouldn't even begin to describe the complete breakdown I was having. Paul, Mae and I hopped in the car just as it started to drizzle. We arrived at the building downtown after I had gotten turned around by my GPS -Thanks Technology!- I pulled into the garage only to read a sign that said to move forward, DO NOT REVERSE!, which threw me and made me think I was pulling into the employee lot. I rang the buzzer and told the voice on the other end that I had made a mistake, and the voice instructed me to stop inside and get a ticket.

Oh, is that all?

I pulled into an emergency lane, freaking out about the time. I saw a guard station at the exit gate. I hesitated. I couldn't decided what to do. The clock ticked forward another minute. I grabbed Paul and then Mae. I stopped a stranger to ask where I should get my ticket. She pointed me in no less than three different directions. The clock ticked forward. My eyes filled with tears, and I said, "Okay, thanks!" in the most forced cheerful voice I could manage, which probably sounded like I was screaming at her. I turned to get back into my car.

"Do you need help?"

I spun around. A man in green scrubs with a surgical cap on marched toward me. "Can I help? Is your appointment in there?"


"Is it with cardiology?"

"No, we're here for the geneticist. I think I pulled into the wrong place. I'm turned around." I just couldn't stop my eyes from welling up. He was going to help!

"Which floor?"

"Um, 19."

"Hold on." He ran to the guard station at the gate, gestured toward me and came jogging back. "Here's your ticket. You can park in here. Looks like you pulled too far forward since it is one-way." A car pulled out of it's spot about 30 feet behind my car. "Oh, hang on!" He ran back and stopped traffic and waved me back. I reversed and parked. By the time I hopped out of my car, he was gone.

The whole experience just about broke me. I sobbed the rest of the way to Dr. P's office. I had settled a bit by then because Paul was so excited to ride in the elevator with so many buttons. We had our appointment, and then were sent to the hospital across the street for the blood draw.

I will spare you the drama that followed getting to the hospital, and then to extended care for the girls before it closed at 6. I will only say this: That doctor in his green scrubs was Christ. I mean no hyperbole or blasphemy. That doctor was animated by compassion for this weepy mess of a woman with two small children at his work place. He did very little, but more than any other person of the hundreds around me were willing to do. It took all of three minutes, and he absolutely saved me. It was clear he was in a hurry, he skedaddled immediately. Three minutes of his time gave me the strength to face the rest of that trying day, to not snap at my bouncy, clueless three-year-old, to remember that God cares about my rough day enough to show me in a clear and concise way that He is always present, caring and active. I pray that I can do that for someone else just once, even if I never know it.


Friday was better, though I was jumpy. The results would come today. Before I left to get Paul, I called the office to leave my message that I was waiting for Mariana's results. I picked Paul up from school and drove to pick Scott up for lunch. We sat down to eat a yummy lunch when the phone rang. It was the doctor's office. 

Dr. P told me that if the nurse called all was well. If Mariana's numbers were less than perfect, he would call. "Just remember, it may be that she had an off day and we'll just want to re-test next month to make sure it's not a downward trend. She's a person, not a machine. Numbers fluctuate."

I handed Scott the phone. "Hello? Yes, I'm her husband, Mariana's father. Yes, we've been waiting to hear back. Yes, she's right here with me. Well, I would love to hear the results too...Great, thanks! You too. Bye." Apparently the nurse expected Scott to hand me the phone because I am the mother? I don't know, but it tickled us.

We had our moment of relief. The tension released and we were suddenly unbound. Paul and Mariana continued bouncing around as though time hadn't just stood still.  "Thank you for letting me answer the phone, that was kind." 

Well...."Well, it wasn't all that generous. I, um, well, I didn't want to have to tell you bad news..." 

We laughed, a little too hard. We enjoyed lunch, I took Scott back to his office and off I went to pick up the girls. No more blood tests for six months. We've been told it gets easier, and I look forward to it.

Thursday, September 13, 2012

The Fear that Has a Name

Today is the day that I dread. Today Mae has a blood draw. They will test for, among other things, cancer. Leukemia. The risk before age 7, we've been told, is 1 in 100, or, 1%. This sounds so small and negligible. However, we had a 1 in 900, or, 0.1% chance of conceiving a child with Down syndrome, so, screw you, Statistics.  

*The draws are due to increased risks, there is no other indication she has a thing wrong with her.

I do not think Mariana has cancer. I do not dare believe it is impossible. But even the word cancer is such a bomb to the system. Of all the frightening things Mariana might have to deal with, the utterance of the word cancer made me feel like the doctor stuck a vacuum in my mouth and my lungs deflated.

It wasn't so much the fear of my daughter's death as the knowledge that even treatment is a tortuous path. It crushes me to see her in any pain, even if it's just gas. I hate to hear her fuss or cry because she's the baby that doesn't even fuss at a vaccination. Her bottom lip might pop out for a good strong frowny face, but she doesn't cry. I can't even imagine Scott during such an ordeal. He's upset if her diaper is too tight.

Yet I have faith that God's grace will sustain us come what may. It is the waiting that is agonizing. I imagine Christ's Agony in the Garden. Different, yes, but that waiting, the pleading, the surrender to the will of the Father, it hurts a little too much. I feel incredibly blessed by the distractions of my children, of having the task list of things that have to be done anyway. While I may complain that laundry is never done, and my floors are coated with filth and homework is always a battle, I quietly thank God for it all. If I had time to entertain my anxieties, I would never move.

But life is still moving and still good. We bought a house. The school year hasn't killed me with paperwork yet. Best of all, Mariana was given clearance to start solid foods! We started with applesauce. (Organic, no sugar added applesauce, made by fairies and lowered from Heaven by a golden thread, lest anything contaminate my preshus bay-bee. Never you mind the dog licks her on the mouth every day.) It would seem that she approves of applesauce. In fact, I believe I have now been promoted from Queen of Delicious Sustenance to Empress of All Good Things. We captured some photos, but nothing could capture the looks of, "Whaa...are you? For me? I adore you and will do anything you ever ask me." cross her face. Believe me when I tell you, her face is what I imagine mine will be if I ever get to heaven.

It is good to be in this world where not all things are terrible, even when many things are terrible.
What is going on here?
You are locked in as my favorite parent, Lady.

Wednesday, September 5, 2012

Six Months

We celebrated today's milestone last night by partying all the live-long night. Mariana was up every three hours, and I was deeply considering giving her a potato or something to gnaw on. I just made myself laugh with that visual...Baby gnawing on potato, I think I'm a bit punchy.

I've learned a few things (and I litterally mean few) in 6 months. Here's my lazy way of celebrating 6 months of Mae.

Partial List of Stuff I Learned Having a Special Needs Child
  1. Every single human being has special needs. Having something diagnosed makes everything a little easier. How do you diagnose that child who is a lazy student? What if it's because school is too easy, or what if it's because school is too hard or what if it's because biting off a hangnail is more fun than math?
  2. Special needs people are first and foremost human beings and therefor wonderful and annoying in their individuality.
  3. Babies, even special ones, are jerks. They do what you don't expect and then right when you have it all figured out, change the rules. And they have the nerve to object to their toes being nibbled off.
  4. Reading too much can make a person cynical, but it can also fool a person into thinking that good parenting can "cure" all the problems. It can't. It won't. You will fail at a bunch of stuff anyway. Failure won't kill anyone, but hopefully it'll make you humble.
  5. Developing a better relationship with your spouse will save your sense of self. It is way too seductive to make this thing the center of your universe, and thus lose the fact that you have value with or without this wonderful being.
  6. Developing a better relationship with God is the fastest way to get answers. It's always a surprise and yet not a surprise when I am struggling with something and I remember, "Oh yeah, I might want to have a chat with God about that." Almost immediately one of two things happens: I read something or talk to someone who helps, or I gain the insight that this particular thing is not a priority and I can let it go.
  7. Babies will start squawking the minute you sit down to type, thus reinforcing the jerkyness they posses. Luckily they are cute.
Hey! I'm stahvin' here!

Wednesday, August 29, 2012

Ressurection Time

This time of babyhood is the toughest for me. 5-6 months, when the baby isn't on solids yet, but is ravenous, add to that the 4 whole other young ones who need their mommy and the fact that we don't live near family and you get the perfect crap-storm of "WAAAAAAHHHH!" And this past week was terrifically awful since Mariana decided that this through-the-night sleep schedule isn't really working for her anymore.

And then yesterday happened.

Mariana woke up at 1AM, and I was tapped out. I just couldn't nurse her and I was out of pumped milk. I asked Scott to give her formula. When he put her back down I heard her cough, but I was tired and I fell back asleep. When she woke up she was coughing again. There she was, cheerful as can be, covered in vomit and poop. So I cleaned her up and nursed her and 10 minutes later she vomited again. I took the kids to school, started some laundry, and midday sat down to my blog to tinker. There is this thing that tells you where people come from to get to your blog, like if it's linked on Facebook. I clicked a link I didn't recognize. It was a graphic porn site. (Luckily, I think this is fixed and it's a fishing type mechanism that isn't reflective of an actual link to my blog on a porn site.) I picked up the girls from school, they ate a snack and started homework while Molly and Paul played and I began to fix dinner. Molly was supposed to have her first soccer practice that evening. All at once I heard a really loud thud and crying. Molly came out holding her head. When I took a look I saw a gash, and inside the gash, her skull. Next came interruption of Daddy's very important meeting, loading all the children into the car without having had dinner, trip in rush hour in the rain to the ER, Daddy bringing Molly in, a terrible trip home complete with the punishment of kids being sent to bed immediately after dinner.


1. Mariana's puke was not indicative of an allergy, but of being overfed because 6 oz of breast milk is much less dense than 6oz of formula.

2. The porn thing alerted us that our computer filters are NOT as refined as they need to be and I was the victim rather than one of our innocent kids.

3. Molly's practice was cancelled due to weather so she didn't miss it. Her injury was not as bad as it could have been. She has a Daddy that she wanted to take care of her, and he did.

4. Even though I was upset with the kids I stopped and got them cookies because I was given the insight to see this was tough on them too.

Though it's been a very hard week for us, I know God is here in every moment walking along side of me, sometimes dragging me in the right direction because in my heart I want that. My dad was telling me of a man he knows who is suffering greatly right now. This man is a good man with a deep and resounding devotion to the Rosary and the Eucharist. Dad relayed how when St. Teresa of Avila was being challenged she said to God in frustration: "If this is how you treat your friends, Lord, no wonder you have so few!" and how that reminded him of this poor man suffering.

Many times I've felt that way, but not today. Today I remember it isn't God who is doing all this to us. You see, I believe in Satan as a real being, and I believe he's a desperate sort. Time and time again when things are going rough, but my spirit isn't broken, they get worse. But this does not come from God, who is Goodness, it's someone who is angry he can't beat God. It's a tantrum being thrown because Satan sees us getting up after being knocked down over and over again. His fury is only intensified when we have the gall to use the very cross we're crumbling under as a crutch. I've noticed this pattern time and time again. When Scott goes out of town, it hits the fan at home. When the kids get sick, the weather is beautiful and when they are well again, it's bad.

While I don't think Satan is orchestrating the weather or illnesses in a direct way, I hear him whisper to me how unfair things are and tempt me toward despair. Why wouldn't he be enraged when I just let go and build a horrific messy fort in our living room on those stormy days? How dare I just make do with the circumstance? How could I?

Simply put, I can't. My secret is that I do give up. I'm not so tough, and I know that. It's relying on God that makes the insufferable okay. It's God who gave me a sense of humor about the ridiculousness of raising children. It's God who gave me sisters and friends who have shared experiences. It's God who gives me a community to rely on. It's God who points toward the putting back together and not the tearing apart. It's not the death, but the Resurrection:

Monday, August 27, 2012

No More Doctor Google

This is where I admit my Hypochondriac Mother Instinct is more difficult to curb because of the extra chromosome. Mariana had a bad few days. It started Thursday night when she cried, for no reason, for an hour and a half until Scott pulled in the driveway. Once Daddy was home to witness, she promptly fell into an angelic sleep leaving me to look spectacularly bedraggled. I wonder what it looked like for Scott to pull up to his home with his wife outside looking like 6 kinds of hell while the baby looked like faeries gathered to create a perfect baby figurine. I was outside because Paul was screaming, "MOMMY WHY IS MARIANA CRYING? TELL HER TO STOP! FIX IT! SHE NEEDS A DOCTOR!" And the girls sang the refrain that usually cheers their sister, "Mari-ana, Mari-mari-ana!" to the tune of "Alluette" over 1,000 times only increasing our household stress by a million.

So. Yes, that happened Thursday night, and then again Friday evening. I also have been suffering, with saintly fortitude, seasonal allergies that I have refused to medicate (except at night with a single Benedryl) in case a drop of medication sullies the milk I feed my sweet princess. And have I mentioned that no one in this god-forsaken house sleeps anymore? My bed is infested with humans, most of whom smell like sweat and bad breath. (Not my husband, of course, he smells like masculinity and devotion.) At any rate, is it any wonder the siren song of Doctor Google was calling to me?

I am happy to report I did NOT Google Mariana's symptoms which were; crying, screaming, day-time wakefulness, irritability if not carried constantly, and pooping in her diaper. I just knew Dr. G would return with ALL IS LOST, THE APOCALYPSE IS UPON YOU, TAKE COVER, WRITE YOUR WILL and POSTPARTUM PSYCHOSIS AS MANIFESTED BY INCESSANT GOOGLING. The strength of my will is astounding, I know. However, by Sunday morning, she was my sweet baby Mae again.

Though she didn't sleep much last night, which is probably a symptom of Hating Your Mother.

Sunday, August 19, 2012

One Moment

I am nursing Mae right now. She woke up in the middle of bedtime and Scott is out. Her hunger turned to fury as I took just an extra minute. I fed that fury when I changed her dirty diaper before nursing. She eats constantly it seems. She's so hungry, but solids are forbidden just yet, and so she eats like a newborn again, though she still sleeps at night...mostly.

I sat down to feed her and she attacked her meal, taking big gulps that audibly plopped into her stomach. Her arm still flailed with some kind of furious sign language expressing displeasure at having to wait. I considered her will, how strong it seems, how she insists on success and perfection. I get the feeling she's none-to-pleased with our new PT arrangement that calls for more exercise. I imagine her thinking, "I can do all this, why must I work at it? Snuggling and food are way better!"

She calms and begins to stroke her cheek with her fist. "That's better." I coo. Her middle finger slowly rises up. I giggle. "Stinker. You lovely, sweet sasspot." She sighs and drops her hand. A truce.

It's easy to forget the world in these moments. There is only this time with this perfect person and our synchronized thoughts. There is the overwhelming urge to commit this to memory-the smell, the feel, the warmth of  her. There is no special insight, only a desire for this bit of heaven last, and the voice from within whispering, "Enjoy."

Friday, August 17, 2012

The First Week of School

My first born. Seriously.
And the Crown Prince.
This is my second born.
This is my third born, kindergartener.
Can you guys believe my mom hasn't died from all the Cute up in here?

Wednesday, August 15, 2012

Endless Summer

August 10 -
As I told my friend, Audrey this morning, I feel as though I've been asked to jump on a treadmill already going 8 MPH.

We returned home Sunday night. Scott, my Knight in Flat Front Pants, flew up to help drive home. Maria kindly let us go out and kept the kids. We were able to watch my brother, Nick, play a little at a bar. Nick didn't pick up the guitar until he was already an adult. Now, in his forties, he gets a few gigs a year. It gives me hope that I may be able to learn a new skill and improve what I've taken interest in. But much of that will have to wait, because, you know, raising babies and all that.

Being back in Ohio was pretty great, other than missing Charlotte so badly. She, of course, had more fun than ever before, and I was so happy she got that. Charlotte needs her space from the family, and I understand that. I too need space at times. I am glad she could go with extended family and just be, and I'm thrilled it was to a nature oriented place, which is what restores Charlotte's soul best.

Kate also had a good time in DC. She did spike a fever, which made me feel the anxiety clouds were hovering. But, she was was in the care of my mom and my aunt, who is a nurse. I trusted they could handle everything. It turned out she has a canker sore on her tonsil, which has always causes some kind of over-reactive immune response from her. She's still not eating normally, but is no longer feverish--Praise God.

We discovered something interesting about Molly. I kid that Molly is more special needs than Mariana at times, but in reality it is no joke. Molly's dietary needs are confounding and we struggle constantly with trying to figure out what on earth she CAN eat. (I won't go into detail because I really don't want to right now.) Anyway, she's always been a bit lethargic, and we discovered a B12 deficiency was probably the culprit. She really really blossomed! I loved watching Molly become positively bouncy at my sister's house!

Paul is the same, and I thank God for that every. single. day. He is such a light for our family, and keeps us laughing and is a reminder that life IS good.

Mariana received a lot of love in Ohio and lots of threats of kidnapping. (In our family the threat to eat or kidnap a baby is the highest complement.) For me it was edifying to watch as my family adored her. Sometimes there is a seemingly "Bless your heart." sentiment that comes across when people interact with her. It was sweet to watch her just be loved with no conditions. Not that that has never happened yet, it just didn't happen at all in Cincinnati.


We met Nora face-to-face in Ohio. I was very nervous on the way. It felt like a blind date almost. I wondered what it would be like to be in the presence of such a gift, such an obvious God-sent love letter. It was, in a word, normal. She is darling and tiny and has funny little noises. Her eye was giving her a hard time, which was familiar to me since Kate went through a lot with her eye. Aleisa and William were themselves, if a little more tired than I last saw them. Leis talked about the coming week being difficult to imagine, and I understood as much as I could. Mariana was a giant and far more cheerful than she had ever been the whole trip. I wondered, later, if perhaps the presence of God just cheered her up a bit. I'm certain all those prayers have thinned the layer between heaven and earth wherever Nora happens to be.


August 14/15
I truly have no time for this post, but I have something on my heart that wants to get out. I've hit a tough point for me. We had Mae's PT evaluation. The PT said nothing I didn't know, she was realistic in her assessment that Mae as a whole person is doing beautifully, however, in breaking down individual skills there are lags. Small things here and there that need to be worked. I spent the evening digesting this, stressed to my max because of all the start-of-school chaos that must be put in order. The word is fear. I am scared I am not going to be able to do all of this. It isn't just Mariana, it is all of it. I know that scheduling these evals for this particular week was bone-headed. But this is our life. We have 5 children. There is never a perfect time for these things. I adore my children, and I want to do what is best for each of them. The looming question is; Can I do it? 

The tricky thing about needless anxiety is how it twists your thoughts up. Of course I can not do this. It never has been up to me to do it. For one, these are our children, mine and Scott's. For another; these are His children. I have to, above all, communicate with God on how to proceed with all my duties, allow him to inspire in me a good sense of priority, and live it out intentionally. I see more and more how much this is leading me to communicate with Scott, to pray for Scott and to give Scott more space to order his life as well. These are things I've known in the recesses of my heart, but have had trouble grasping them and seeing them for what they are: a map to peace.

I've had light shed on some of the causes of my anxieties as well. I have the desire for Mariana to be something she may not be. Because she has been doing so well, I've been attached to this picture I've painted of the future. I was completely unaware of my attachment, but even as the PT said things I already knew, I felt a sadness come over me. I can only liken it to when your first child does something wrong on purpose for the first time. Whether it's a lie, a willful disobedience or a physical assault, it's almost always a surprise to see your firstborn misbehave of his own free will. It is hard to see imperfection in our perfect little loves. Of course, this only serves to inspire us as parents to love our children more, and guide them toward a higher standard. But there is a bit of grief that can't be denied when it is time to buckle down and start the discipline. (And yes, we will be disciplining Mariana. Her head wants to go one direction, and we must train her muscles to hold her head in neutral.)

Tuesday, July 10, 2012

Posting Mash-Up

Mae's 4 month check up was yesterday. Time is marching on for our little muse, and I was happy we got in with Doctor Miles today. We like everyone we've seen in the practice, they do a spectacular job of being on the same page and having similar, if not exactly the same, philosophies regarding the practice of medicine. I think Dr. Miles is my favorite because she's the first one to see Mariana, and the first one to tell me that I have all I need to raise this gorgeous babe.
Four months ago I was in the hospital sitting in my bed after a c-section. I was jabbering away about I-don't-know-what-all. I remember Dr. Driscoll, the NICU doctor, coming in and standing next to my bed to tell me he had examined Mariana. He told me things that I expected, the fluid in her lungs, but his voice betrayed him and I knew something big was wrong. My mind thought oxygen deprivation had led to brain damage. When he said he suspected Down syndrome I felt relief. It was a known where as I didn't know anything bout the Thing I Had Feared. I remember the kindness and respect Dr. Driscoll showed. He told me there would be no secrets, he would tell me if he suspected something. He understood that I deserved to know everything he did. There was no sparing me out of a misguided sense of compassion.

The nurse told me she would take me to Mariana as soon as she could get me in the chair. There was a restriction on moving me because of the anesthesia, but the nurse said if I could get to the chair, she would push it. Slowly the medicine was wearing off, at least it was enough to get to the chair. She pushed me the endless distance to the NICU where I couldn't wait to hold my baby.

The NICU was beautiful and less clinical than I expected. It was a quiet, dark place with few babies. Mariana's incubator was in front of the nurses station. I was told I wouldn't be able to hold her, and instead introduced my face to my baby. I stroked her chubby cheek and mourned the reunion I expected to have. It was strange how I felt. I felt like I was watching myself in a play. The numbness may have been residual from the c-section. The anesthetist gave me something to help me relax, I am not sure though. I do know that it was difficult not to grab up my baby and do all the loving things that mothers do when they first hold the baby. My arms never felt so empty.

In my room I would think carefully about the benefits to Mariana's NICU stay. I would consider the pain I was in physically and the benefits of having good, solid rest instead of waking every two hours to feed her. I would carefully list the care she was given and the things I would not have to do once she was released because they had done them already. I pumped and watched my milk come in. I was thoroughly receptive to the kindnesses offered and the grace that poured out. The whole time I felt the precipice of fear beside me and the crook of the Good Shepherd keeping me safe.
Dr. Miles marveled at Mae yesterday. She was glad to hear of all her rolling and babbling. She congratulated me on the sleep and nodded her head in agreement about what we are doing at home. She said Mariana's tracking of the light with her eyes is perfect. We chatted about some of the things that are a bit lacking. Mae isn't pushing up on her hands, but still on her forearms and she is tucking her chin to her chest quite a bit. But Dr. Miles thought that intervention for those things in a month would be the answer. She wouldn't be considered behind on those things until 6 months of age.

There were some happy surprises. For one, when Dr. Miles was checking Mariana's head rotation, she used the light and called her name. Mariana stared at her face. When Dr. Miles moved her face, Mariana followed. "Oh good! It's a very good sign that she prefers faces to objects!" At that point Mariana started complaining with coos of annoyance. We started talking about not introducing food until after her 6 month check up and how Baby-led feeding isn't a great plan for Mae because she will reach to put things in her mouth, but that could be a sign of teething, not necessarily feeding readiness. "Oh, yeah!" I recalled, "She's already a rasberry-blowing fool." My point was that Mae is always blowing the saliva out of her mouth, which I always took as a teething sign. Dr. Miles about lit up when I said that. "That is another 6 month skill!"

For now, Dr. Miles is evaluating Down syndrome as something that ups Mae's risk factors, but she's tracking Mae on the normal development scales because she's off the DS charts. I'm really encouraged by this. I know we can cope if Mariana slows down, but why not enjoy the triumphant milestones when they come?
The doctor and I talked about getting in contact with other families who have a child with DS. I told her of the experience I had with a woman whose son had a host of difficulties. As she asked about Mariana I could detect a spark of... irritation? I spoke about my sweet baby. The thing is, I understand. I have had two instances where I have felt a surge being around "normal" babies. 

One instance was when I was introduced to a woman who had a baby the same day Mariana was born, and named her daughter what I had wanted to name Mariana initially. Her baby was perfect and holding her head up so strong. Heck, her baby was pulling up to stand, could you imagine? And I didn't want her baby, and I didn't want to change Mariana. I'm not sure what I felt, or that there are words for it. It was like that for an instant, then gone, but it had left a mark where there had been none, and I still feel...shame?...for whatever tugged at me in that moment.

Dr. Miles knew exactly what I was talking about, probably because she's got a ton of experience. She thought she might be able to match us up with someone that would be a good fit. It's not that we feel like we need to be matched up, but it seems like a good idea to befriend someone who knows without having to be told. I don't know, I guess we'll see.
The rest of our crew are all bopping along enjoying the summer. They fight, play and argue with their parents in regular fashion. The guinea pigs got new digs in a proper hutch and now live outside, praise the Lord. Our sycamore tree ate our house, and the roof is leaking thanks to the tropical storms we were blessed with. The house hunting has begun in earnest, and Scott and I still have different ideas on what we'd like. The house I initially liked has been nudged down the list by another in the same neighborhood. We tour two tomorrow night, and then I leave for OR. All in all, time is marching on as per the usual, and we love it.