Friday, June 29, 2012


--- 1 ---
Mariana Lynn is mobile! If this were the type of blog where I actually wrote what my reactionary thoughts are, there would be swearing. OH DEAR HEAVEN! While I am aware that she had the ability to be mobile since she started rolling from both sides, she was unaware. Today she put the two rolling functions together and now all I want to do is wear black and cry.
--- 2 ---
Yes, I realize this is actually kind of cool. But I'm a mom who rather enjoys a certain amount of immobility in my babes. With mobility comes tomfoolery.
--- 3 ---
I have to buy the kids school supplies next week. How weird is that? I realize I am missing all the good sales, but! I'm going to be traveling so much the rest of the summer, I will have no other time to shop. I already took Molly (and Mae) to TX, next up is OR, followed by a long road-trip to GA and OH. I will have some of the children with me for each trip, which will also be cool for them. The two oldest will have the chance to travel with other family members to far off places during all of this chaos. When you have to scrap practicality for adventure, I call it a win.
--- 4 ---
I'm tired. I know, I know, same old song and dance of the over-tired mom. However I've discovered this odd problem where I'm exhausted beyond reason at 6PM, but by the time I finish my work and crawl into bed at 11, I'm wide awake! Chamomile only helps to a point, and anything stronger will knock me out too much since I have to be available to nurse the baby. Quite the conundrum.
--- 5 ---
Paul and Molly are starting to figure out how to play together without fighting. Yesterday I caught them bonding over a little frog they had captured and put in a bucket. Between the filth and the two heads bent over this bucket I almost melted on the spot. I can not tell you how much it breaks my hear to hear the way they fight. It's like a snake and a mongoose, each taking the roll of the other depending on the argument. To see them work it out and mature this way is pure delight.
--- 6 ---
Today I had a massage. It was amazing. Insurance covered it. Is there anything more blissful than that? 
--- 7 ---
Nora needs our prayers. Please pray for her, her family and the medical community responsible for her care. This tiny girl has brought hope to so many broken hearts.
For more Quick Takes, visit Conversion Diary!

Tuesday, June 26, 2012

Hello, My Name is Mariana

Things the professionals said:

I will be slow
  • to hold my head up
  • to roll from front to back
  • to roll from back to front
  • to respond, smile, laugh, be vocal
I probably won't
  • breastfeed
  • be healthy
  • cry for food
What I have done
  • rolled over at two weeks
  • rolled back to front at 3 months
  • hold my head up
  • smiled, laughed and coo
  • breastfed at 4 days
  • maintained good health
  • cry for food (in fact, perhaps my stenographer can take a break and FEED ME!)
I'm adorable, I play hard and I travel well. I am 3.5 months old and I have an extra chromosome. So what?

Thursday, June 21, 2012


I suppose I was a bit prideful. I thought I was untouched. There were those parents who grieved when the diagnosis came, and those, who like me, found it to be more like an interesting insight into who the child is. I didn't grieve a child I never had. I met Mariana in that NICU and felt settled and at peace. Meeting her was like coming home. "Ah, I'm here, you are here and we can finally just be together." But perhaps that was the Denial phase.

Denial is based in ignorance, I think. "I don't have cancer, I feel great!" It's easy to deny that which has yet to be proven to us. And so Scott and I felt wonderful. Our girl had very few physiological impairments. She was, for all the doctors could tell, a healthy baby girl. There was no endless time in the NICU, no emergency heart surgeries, no deafness or digestive problems. Our children loved the new baby. We were whole.

I just didn't know.

Our community is amazing. Scott and I are open to questions and not put off by the ignorance surrounding Down syndrome. (Mostly this is due to the ignorance we lived with until our girl changed things for us.) Besides, ignorance isn't hateful or shameful, though it can lead to making some hurtful comments. Still, I am not easily hurt, and since I'm a professional foot-eater, I'm not overly frustrated.

And I didn't really want to know.

Initially I didn't do much research, which is shocking to anyone who knows me. I'm an info junky and pro-web surfer. But I just felt this revulsion to plopping Mae into this box of DS, which I think is a temptation for a person like me who craves order and routine. "Here is Mariana's definition, now I can deal with her." I can so see myself falling into that trap, and as a mother, I'm disgusted by that. Mariana is herself, not a diagnosis. I say it as much for myself as anyone else.

But the world is cruel sometimes.

I did begin to read, and then, like the glutton I tend to be, I couldn't stop. I found the information about children being aborted for the unspeakable crime of having an extra chromosome. I couldn't stop reading the opinions of the intellectuals who espoused these ideas. And then I came upon a blog where a woman offhandedly mentioned that of course she would abort her baby if it had DS - and please, no comments from parents of these kids exclaiming, "My child is the light of my life, blah-blah-blah" It hurt so badly to read these things, to know that there were couple frightened into snuffing out the existence of an amazing life. The weight of my sadness felt like it would crush me if I let it.

Then I became angry.

I was angry there exists such idiocy. I am angry people are complacent in their own ignorance. You don't want to hear from actual people who live this life? That doesn't make you smarter than me, it makes you inexperienced, and therefor, NOT a good judge. I'm furious that there are individuals who really believe that they are so wise and brilliant because they have a high IQ, years of schooling and can avoid making decisions based on silly things like emotions and "love" and actual real-life experience.  As if my parental intuition, because it cannot be quantified, is worthless. As if children can be raised by a formula provided they have the right genetic make-up. I get so angry I want to find these people and scream, "Who are you to ask me to defend my daughter's existence?"

And I'm angry about the flippant. I went to a work out where the trainer was talking about his father attending one of his events. "He's always yelling my name and clapping for me. He's such a retard." I know I've blogged that I don't want to ban this word. I don't. But I hate the usage of it as a derogatory noun. This is the same guy who, after I told him I missed a work out because I was up all night with sick kids, said, "You have 5? Huh, I couldn't have any because I like sleep too much." Clearly he's immature, but his flippancy made me sick. I said nothing. The lack of sleep had made me mean inside, so I said nothing to avoid saying the worst kinds of things. I stayed angry for too long.

Love for Mariana demanded I not be satisfied in my own anger.

I'm not through my grief, but I understand it more. I do not grieve Mariana's diagnosis. I grieve that the world is full of such a hardness, that even those who espouse a doctrine of love and peace believe they can exclude the handicapped. They miss so much when they close their eyes to the value of these lives.

This is what is missed when they close their ears to the families who love their Down syndrome children:

I find joy every single day in my life. There are the mornings in bed with the kids between us. There is every first we'd thought we wouldn't see for a long time. There are the times in the kitchen when I am stepping on kids and the dog and I'm beginning to lose my patience when one of them says, "This is the best day ever!" There is our 3 year old boy who barges in our room every morning as asks to hold Mariana. There is the moment when Scott walks through the door just as I start to think the whining will drive me crazy. There are the nights where we actually sleep 6 whole hours. There are the frustrations that turn to victories and the sadness that gets licked off our faces by the dog. There are tears that turn into warm baths and snuggles. There are nights of sleeplessness that turn into victorious days where I keep my cool. For every moment of fear, desperation or frustration, there is a mini resurrection moment when it is all made worthwhile. That is life, with or without a Down syndrome kid. Mariana gives us the eyes to see it. I grieve for the blind.

Tuesday, June 5, 2012

Shout Out to My Kidzzz

This first part of summer has ROCKED. I just wanted to take a little time to say that I've been quintupley blessed by God in the form of my children. Honestly, more than once since Memorial Day weekend I have shaken my head and thought, "Well this is evidence that blessings aren't earned, and karma isn't real."

KATE: This little girl is growing up in the best ways. Since her First Holy Communion I have seen such an effort to grow in virtue as I have never seen before. She asks to go to Reconciliation, she helps with her siblings, she helps in the kitchen and she practices her guitar faithfully. No one is perfect, but she is working on it.

CHARLOTTE: This lanky ball of energy has cleaned up her room 3x's daily for the past few weeks. She is wonderful with Mariana, yet doesn't pester me to be allowed to hold her. She is sweet to Paul even though he is full of sass and vinegar with his 3-year-old self. She reads to Molly and she's writing stories. I can see God's goodness in her like light through a prism. It's awesome.

MOLLY: Oh my. Can I just brag on my girl for a little while? Normally I have to laugh at Molly for her charm and her ability to get away with doing nothing. However, she has worked so hard on her Letter People activities, and on accomplishing things like getting dressed before I ask. She helps clean up without complaint and has been using manners when I expect her to lose her temper. She remains Molly, but with an uptick in maturity. She's such a sweet person!

PAUL: Paul has been coping with some serious 3-year-old temper tantrums, but he tries so hard to be good. He is very penitential when he's done something wrong. He also is doing "school" work at the table with the girls and working very hard. He can write his name and draw a circle so far, which is more than I expected given that I have done anything with writing. He also drew a beautiful heart, but before I could take a picture he drew over it while telling us a story of what was happening. The story included Iron Man defending "heartie" and villains and blood and died. Lastly, this boy adores his baby sister more than I have a right to expect.

MARIANA: Perfection in a 3m. old body. Our girl totally showed off all her skills at her Early Steps evaluation, scoring 100% for gross motor skills. That is 100% for all babies, not for Down syndrome babies. Our sweetie didn't even cry when she got her vaccine this month.* She loves faces and our presence and gets lonely very quickly if left in her swing or bed while Mommy is trying to get dressed or cook dinner. Today when I was trying to get somethings done, I put her on the floor of the playroom while the older girls played Barbies. She was so happy for a full 20 minutes! She adores being in the mix and hearing the sounds of our crazy house.

I know this just a brag post, but this is our life as much as anything else. I love these wonderful people. I can't believe they are ours to raise! Most of the time I am tired, nursing, covered in sweat and spit up. It's such a blessing to be able to have time to look around and notice that life is good.

*Mariana's vaccine schedule is one per month b/c I'm antsy about doing more than that in such a little person. This is my own concoction having nothing to do with DS or actual medical knowledge. Make your own choices and respect mine.

Saturday, June 2, 2012

The "R" Word

Oh dear.

So Margaret Cho, a comedienne, made a dumb comment about being nervous to have a child because she doesn't want a retard. Okay. Of course I, now being the parent of a shiny new baby with Down syndrome, have been grilled on how I feel about that. So, since I have been asked in real life, let me put it in writing.

First of all, I felt like I shared in an inside joke with God because we are all retarded. If Margaret Cho wants to avoid having a baby with special needs she ought to refrain from procreating.

But as for the use of the word, I don't care. I'm not on the "Ban the "R" Word" bandwagon. Retard is not a noun I use. Retard is a verb, as in, "The creek did nothing to retard the forest fire." Since the word has meaning that is useful to the lexicon, I hate the idea of banning it, or calling it "the R Word". Like Dumbledore says, "Fear of the name increases fear of the thing itself." I remember once playing Euker and using the word "renege" to have the other white players gasp. My teammate was black, and I looked at him and said, "What the hell is their problem?" to which he replied, "Oh, you haven't heard? Any word that sounds similar to the N Word is now off limits without express permission from a black man." And then he and I cracked up because renege has nothing to do with that.

But there is a bigger reason for not banning the R word. I want to know what people actually think. If they are ignorant, let them be instructed. If they are assholes, let them expose themselves. I don't want to be surrounded by people who hold repugnant opinions and not know it. I want to know it so I can respond. Hopefully the assholes can be converted. If they can't be converted, and they can't be avoided, I can at least chalk up their presence in my life to redemptive suffering. They give me the opportunity to love my enemies, and God knows I need more practice.

Okay, I may have an issue with people being mean to my little girl. I'm a mama bear, and there is a high risk of issuing a Corey-style tongue lashing. However, it will also allow me to teach her how to cope with jerks. And she will need that skill. She's being raised Catholic and is the 5th child. Life was never going to be easy.

And there is one last thing that bothers me about banning words: It allows the biggest jerks determine what things mean. If jerks start using a word as a putdown, nice people feel like that word should be banned. No thanks. I really don't want a language defined by jerks. Instead of banning words, speak up. And then ignore them. Let them laugh at their own stupidity. God always has the last laugh anyway.

Friday, June 1, 2012

Quick Takes!

--- 1 ---
This week I'm thinking about many things, and people. I'm thinking of  Harrison, and Emma & Connor, and especially Nora. I'm thinking about what Father Tony said this week about not letting the news drive us crazy. It would be easy, God knows, with the vitriol over marriage rights, gender selective abortions, the loss of religious liberty and the depressing notion that, once again, people of conscience are faced with a "lesser of two evils" decision again. But if you click the links above you will see God is with us, and has never left us. So, screw the harbingers of Doom and remember The Resurrection.
--- 2 ---
Mariana is also a witness to Hope. The little Miss is now 12.5 weeks and has gained a few more skills. Things like a happy tickle response and holding her own bottle were supposed to happen later. Also, the leg kicking that mimics crawling is starting to rev-up like crazy. And this morning she woke up and sucked her thumb back to sleep. I'm not thrilled with the thumb-sucking, but hurray for self-soothing!
--- 3 --- alors? is a French campaign to raise awareness that Down syndrome is as big a deal as lactose intolerance. It means, sort of, " what?" I love it because Mariana's diagnosis has not been this Earth Shattering Event. In fact, the other kids have been more special needs these past months than Mae-Bee. I also love it because Trisomique sounds so awesome as opposed to Down syndrome.
--- 4 ---
Right now Paul is in his room screaming at me. I love him dearly, but summer vacation has been tough on him because he is not the Crown Prince, and now he knows it. I feel bad for him, but I have to be tough or he'll run roughshod over me. I hate throwing down the gauntlet. I hate listening to any of my kids wail. I hate the idea of raising a brat even more.
--- 5 ---
Really my plan for summer vacation has been AWESOME. I've got chore-charts. I've instituted a Buddy System a la Michelle Dugger. I've created a Mom Bucks and Mom Store reward system. They are all deeply involved in Summer learning. Scott has noted how cheerful everyone is when he gets home. I can't believe how well this is all going, and since I fully expect it to crash down soon, I'm enjoying the fleeting peace.
--- 6 ---
Speaking of Summer Break, we have so much planned. This summer is going to be really adventurous. I don't think I've looked forward to a season so much in a long time. I'm glad the kids are out of school! Wahoo!
--- 7 ---
Paul is now kicking the door, God bless him. Did I mention I hate this?
For more Quick Takes, visit Conversion Diary!