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.

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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.

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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?

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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?...as I spoke about my sweet baby. The thing is, I understand. I have had two instances where I have felt a surge of...something...at 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.

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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.

Friday Quick Takes

--- 1 ---

Yesterday was my sister Kate's birthday. Not just any birthday, her 40th. This is unbelievable for several reasons, most of which is that she's better looking than ever. It would be terribly annoying if she were also vapid and clueless, but instead she's unselfish and very self-aware. I'm convinced it's not her athleticism that has kept her gorgeous, it's definitely her goodness. Kate was my mini-mommy growing up and taught me just about everything I needed to know when I had my little Kate. I still steal lessons in life from her, and I probably always will. Happy birthday Kate!

--- 2 ---

I started running again. I have a half marathon in October, so it was really imperative. This time though, I like it. I had found myself growing increasingly overwhelmed by this Summer Of Adventure and crabby as heck. The other day Scott put his foot down that I was to go out for a run, as far as I needed to, and he would come pick me up. I did and it was like the fog was lifted. I keep forgetting not to get too busy to run. Running, for me, is the simplest form of prayer and the best way to receive God's grace when I'm easily distracted during normal prayer.

--- 3 ---

So, I mentioned the run, did I mention it was 95 degrees and noon? The path I chose was one I thought was shady, but since the sun was directly overhead, it was decidedly not shady. I also took the dog with me. Now, on a low intensity run like that I should have made the 5.8 mile loop since I'm not totally out of practice. I made it 3.1 miles exactly. I took the dog with me, and it's a good thing because I probably wouldn't have called Scott if it weren't for her. She's out of shape too. I'm determined to take her with me since putting her on a diet is impossible in this house.

--- 4 ---

We bought backpacks yesterday. I was going to spend all kinds of dollars on Ones that Will Last, but instead bought what they wanted. Charlie, Kate and Paul chose good sturdy ones while Molly picked one that had puppies on it. Oh, well. She's 5 and so few choices are hers to make.

--- 5 ---

I am convinced Mariana is teething. She is babbling away as well. This baby is a wonder to me. Throw out what anyone tells you DS is like, because it's just not. This is pretty much what the geneticist told us, but living it and accepting it is different. Thank God for this baby. She's really made me more humble, or at least less prideful...

--- 6 ---

Kate's having a sleep over tonight, tomorrow we have family stopping in on their way further south, and Sunday is our Day O' Rest. Next week is full of me prepping for my adventure to a new state, Oregon. I've never been to Oregon and I get to go visit my cousin's family and my aunt and uncle. To top it off, two of my sisters, Kate and Maria, are going as well. I can not wait. Mae is my only travel companion. The other kids get to play at a friend's house while Scott works. Now that I'm running again this is back to being exciting rather than stressful. YIPPEE!

--- 7 ---

Yesterday Paul said that he wants me to have two babies like Mrs. Chick, who is currently carrying #s 5&6. As he gabbed on and on about how it would be two boys and then they could play, he stopped and gasped. "MOMMY, I GOT UH IDEUH! YOU CAN ASK GOD FOR TWO BABIES! IS THAT A GREAT IDEUH?" (Paul talks in all caps.) I told him it's his job to pray for siblings, and then he prayed right then and there, looked up and said, "GOD SAID YES! ISN'T THAT EX-ITING?" I felt the need to tell him that mommies don't  usually get new babies while they still have a baby nursing, but he insisted that God said yes RIGHT NOW. Given that I attribute Paul being a boy to Kate's prayers for a brother, I'm hoping Paul is mistaken...at least for now.

For more Quick Takes, visit Conversion Diary!

QUICK TAKES

--- 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!

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?

Grief

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.

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.

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.