Friday, April 27, 2012

Life is Hard, Try Harder

I woke up to realize I am walking in a minefield. There are so many rules and regulations to talking about Trisomy 21. There is the nagging feeling not to complain too much or discuss the real fears that come with loving a child like Mae because it may give argument to the side that views the abortion of our babies as a valid choice. There is the knowledge that most of my anxieties do not help me parent Mae. I am aware of some things I have to mention to the pediatrician. None of them are threatening or emergencies. But I have to fight with the devil of anxiety every day, countless times over. And there is the feeling of being responsible for changing the opinions of the individuals who believe Mae shouldn't have been allowed to live.

I am struggling with that last one more than the others. For one, I want so badly for the world to see Mae the way my family does. She's gorgeous. She's a gift. She's perfect. There aren't words to tell the world who Mae is and how integral she is to our family. When I first felt her cheek on mine I had the most forceful urge to grab her and care for her my self. I needed to love on her like I needed air. When I saw her in her warmer I felt like the missing piece to our family, the piece we felt was missing when we decided to have another baby, was finally in place. I can't explain how exactly right Mae is while most people focus on what is wrong with her. So much of me wants to keep to ourselves any challenges we face with her because I am defensive of her right to be difficult to raise.

It matters to me what others think of Mae because it is a life-and-death opinion. Even typing that makes me want to scream. A woman I was having a conversation with once told me that she would abort a Down syndrome baby in a minute. I was disgusted. This was a woman with children, who knew the power of loving a helpless little person! I don't recall the discussion verbatim, but I do know that when I expressed shock she defended herself by telling me about a friend or family member who struggled everyday with her child and claimed the child was miserable and would be better off if she were never born.

I don't know the people she was talking about. I probably I rely too heavily on quotes from Dr. Lejeune, but he spoke the truth when he said, “People say, ‘The price of genetic diseases is high. If these individuals could be eliminated early on, the savings would be enormous!’ It cannot be denied that the price of these diseases is high—in suffering for he individual and in burdens for society. No to mention what parents suffer! But we can assign a value to that price: it is precisely what society must pay to be fully human.” Humanity and compassion come from caring for someone less fortunate. Imagine how more humane our culture could be if everyone were willing to bear the burden of each other's deficiencies. Instead, like a bunch of quitters, we are encouraged to throw our hands up and say, "It's too hard." 

We admire those who overcome adversity. We look up to athletes who come back from really bad setbacks. We cheer the single parent who figures out a way to stay home and start a business. We love it when someone who is told, "You can't!" flips the world the bird and does it anyway. We are inspired by the person who never quite accomplishes his goal, but also never gives up. The guy who is willing to die trying-we love that guy. And who doesn't love the Robert Downey Jr.s of the world, who screw their own lives up, have a little "come to Jesus" with the mirror, and make it right? 

But we've started to become the people who cower in the face of a challenge. We no longer look at the mountain as something that must be climbed, but mill about the base and in the valley. And what do we miss when we don't climb the mountain? Why, we never see the full beauty of the valley in which we live! We look at a disease or a defect and decide that it's better to kill the person suffering than fail at trying to cure him, and we miss his contribution to our lives. Is that who we want to be? Is that how we want to raise our kids? Fearful and weak and missing out on the most beautiful parts of life? 

No, I can't change the opinion of the world. What I can do instead is live unafraid and undaunted by the weakness in our world. I'll put my trust in the strength of God when I'm too weak and I'll keep rejecting the idea that failure is the worst thing that can happen. Maybe there will be one person who sees this and changes his opinion. Maybe I'll just raise a bunch of little people who share this attitude. As far as I am concerned, it's a win-win.

Sunday, April 22, 2012

Hm, Been A While

I intended to keep a better record of the goings on, but here is a recap of my weeks since the last post.

The baptism was the Saturday after Easter. My parents came in on Friday and brought the gown, which my mother slaved over to remove spit-up stains. It was pristine. I did next to no preparation even though Scott took Friday off. Instead on Friday we took the kids to the beach. It was chilly and windy, but we said we would do it, and we did.  Even an early morning tooth extraction for Scott didn't stop us. We are trying harder not to let the constant pop-up emergencies to keep us from keeping our word. We don't promise things to the kids, but it seems like there is always a reason not to follow through. Friday night my mom and I went to Winn-Dixie and bought a bunch of deli meat and bread and cheese as well as some fruit and veggie platters for lunch the next day.

Saturday was very laid back. We picked up around the house, mostly I just nursed Mae, so really Scott picked up. My mom prepped meat and cheese trays. I managed to make iced- tea without breaking a sweat. Scott's mom and family showed up mid-day to eat, give Charlotte early birthday gifts and chill before going to the hotel. My sister and family came later in the afternoon from Daytona after stopping at a hotel to get ready.

Mass was at 5:15. I was so filled with excitement that Mae would be baptized on the Feast of Divine Mercy. I had really felt aware of God's great mercy since her birth, and I was praying fervently for his mercy to be poured out upon Nora's family. The actual baptism was after mass, and the great Father Tony baptized our sweet girl. Will, my godson, was her godfather and Kate, my sister and my confirmation sponsor, was her godmother. Father Tony was great, as always, but quick because there was a wedding right after! Mae didn't even squeak at the water on her head. We picked dinner up from Hurricanes and celebrated at our house after. Yippee!


Tuesday was a big day. Charlotte bounded into our room in the morning to remind us to say our last prayer of the novena we'd been saying for Nora. We waited all day for updates from Aleisa and my sisters on Facebook. It was intense. I couldn't stop praying, "Please God, give them a miracle, that girl can change so many hearts!" I had talked to Charlotte in an effort to prepare her for a sad outcome. "Charlotte, we can ask God for anything, and He wants us to ask, but we have to vow to trust His answer. We can be sad, we can be really sad, but today is a good day no matter what. We have to tell God that no matter what we will celebrate Nora. She will either be a miracle or a saint. There is no bad outcome, only our sadness at her family not being allowed to shower their love on a body." Charlotte said she understood, but I got the feeling her feelings of light and joy were spiritually driven. Charlotte is ultra-sensitive and seems to be receptive to the emotions of others. She also seems to anticipate joy or dread grief in advance. I have to admit that her happiness on Tuesday, though it was her birthday, seemed other-worldly. It made me very hopeful.

Nora was born in the evening. It was all very dramatic and joyful and we celebrated with happy tears in our house. We may have been several states away, but our hearts were with Nora's family. I still pray every day for that family and that darling baby girl, but my prayer is more like a cheer, "Keep it up, God! Keep it up!"


I've started calling Mariana "Mae". Paul calls her "May-nana", and I guess I shortened that. I didn't quite realize how often I was calling her Mae until Thursday. I had pulled into the garage and had a ton of things to bring into the car. I left Mariana in her seat to bring in last because she was asleep and I knew she would want to eat when I got her out. "YOU FORGOT MAE!" Paul screamed at me. I've grown used to his over-protective/my-mother-is-incapable-of-caring-for-my-sister attitude, so what struck me was his calling her Mae. I like it. Scott likes Mariana better, so we just call her what we like. Admittedly it's as likely to be a term of endearment as her real name, but I don't think "Sweet Baby Monkey-Toes" will last as long as "Mae".


I started running again. Well, I started the Couch-to-5K program, which is a little remedial for my liking, but I tend to over-do it when I get back in the work-out routine. As my sister Kate says, "Be humble." I try to remember that, but it's hard when I know what my pace yesterday was, and I want to kick it in the face. When I run I feel like a baby bird hatching. It hurts a little, but the sweat feels so good! I am surprised that it's my abdomen that hurts the most after a run. I'm still wearing compression tanks, and that helps, but dude, c-sections are not fun!


In terms of Down syndrome, I've discovered we don't really live with the effects just yet. There are appointments and such, but so it is with the other children. Instead of the dentist, we've got Early Steps. I sense people have a lot of questions, so I try to invite them. I am not offended by curiosity. Even if I get annoyed at some mantras repeated to us, I understand. I knew nothing about this on March 5th. We are still learning. Our girl is doing all the things a little baby should. She is starting to bat at toys and have more head control. She has started to coo a little. She's freaking awesome just like all the babies we've had!


 That is the big wrap up. Weather is all kinds of rainy, which is cramping my style with our new Tower Garden. But am sure the rest of the plants in Florida need the drink, so we'll manage. Life is good, let's not forget it!

Monday, April 9, 2012

Cute Chromosomes and Other News

In happier news we met with the geneticist. He happens to be wonderful and funny and all the things a parent would want, including totally attentive.

"So, you have a list of questions for me?", he asked after wrapping his gigantic hand in a warm and extremely reassuring way around mine. We did have some questions, mostly about her little idiosyncrasies that in any other baby we would ignore and know to be normal, but because of The Downs*, we wonder about them. What about the sleep twitching, the breathing variations, the reflux and the leaky tear duct? Pretty much normal newborn stuff. Stuff than might turn into A Diagnosis, but for now is stuff, like in most babies.

I've gotten bored with Down syndrome. I can't help it. The doctor confirmed what we had gathered on our own, there is a spectrum. We know she doesn't fall into the heart defect/bowel obstruction/severe hypotonia categories. We can't know about her level of mental retardation, if there is any at all. As the doctor explained, there are Down syndrome people who have IQs above 100, which is the general population average. In other words, there is no "They", just Mariana.

I asked him, in a way that could be taken badly by a prideful man, what we are seeing him for exactly. Basically to keep vigil for possible problems. Hypothyroidism is common, and in young ones can affect brain development. There are other possible complications that may (or not) present as she grows up. We are to be on the look out for many things, and yet we are also meant to raise her as we have been raising the other four, to be disciplined, happy, healthy and loving. He talked about treating her like a baby, playing with her, singing to her, giving her the right balance of stimulation and rest. "Don't leave a book about Down syndrome near her or she'll find out that she can get away with doing less!" But he is there for us. The end. Our Down syndrome resource, without any pride and encouraging us to find our own answers online or in books. "You come to me when what you are reading isn't jiving with what you are seeing."

It was a comfort, knowing our doctor has seen thousands of patients with Down syndrome, seeing how unimpressed he was with our family dynamic. His dropping a comment about the likelihood of DS in our next child**, as though it was a given there would be a next. We asked about if there was an increased chance for our offspring to have Down syndrome children. He made a joke about how it's only genetic in the 8th child, if she's a girl and "cute". (Mama did her make-up that day, FTW!***)

The best part of the whole meeting, and I think Scott agrees, was the photo of her chromosomes. Now, I know it's the mama in me talking, but my girl has the cutest little chromosomes ever. They are all lined up and numbered so we could see, yes, there are three 21st chromosomes. There are also two over the letter X and none over the letter Y. Even though we are clearly aware of the fact she is a female, it's cool to see it on an official report on her chromosomes. I mean, really.

Again and again I find myself asking what is so special about this stuff. Of course Mariana is special. Of course I adore her so much I feel like I could accidentally set her on fire with my love. I love her so much that a photo of her chromosomes gives me a warm-fuzzy feeling. What I find is that I'm better about not borrowing trouble from this diagnosis. She may or may not do or be a million combinations of trouble. Isn't that true for all of us? She also may or may not be a million combinations of wonderful, which is way more fun to anticipate. Yes, I'll anticipate the wonderful, and accept the trouble when it comes. It makes for a much more fun existence, I think.

*The Downs is how I refer to Mariana's condition when I am I little tired of running into a particular Chicken Little type reaction. I know I need to be more charitable, but I'm not afraid and can not really understand the fear in others.

**I am not making a prediction, just relaying what the doctor said, unprompted, about our chances of having another DS child. The chances, by-the-way, are the same had we not had a DS child.

***FTW, for those not in the know, means For The Win. It's a declaration of victory, usually over something that was never a competition in the first place.

Sunday, April 1, 2012

I'm Fine

"I'm fine."

It's our blow off answer to inquiries we don't have time or inclination to answer. If someone asks in passing, it's less than polite to go into a litany of complaints. If it's someone you don't want to go deep with, it's your way to keep that person in their proper place in your life, aka, not too close. Sometimes we are just too tired of repeating the same conversation when we are in the midst of personal drama.

"I'm fine."

What happens when it is true? I've been so blessed with one after another offering of support. I randomly contacted Leticia Valasquez, in a quest for holy cards for Dr. Lejeune. She then forwarded my email to someone at the Jerome Lejeune Foundation, USA who in turn contacted me. Not only that, but Leticia graciously linked my blog on the IDSC for Life Facebook page. It didn't take long for an outpouring of comments of support. I am savoring these comments, and saving them in my emotional account. I know there will be days I need them. Days when having a child with special needs will make me feel overwhelmed. Days when I will question God's wisdom. Days when I will think God got it all wrong because I am just not competent enough for this task, and this person is too special to be put under the care of such a weakling.

I am fine. Well, okay, let's revise that to "Fine for a person who has had major surgery and five kids, including a busy 3 year old boy and a newborn." Which, is not technically fine, but at least manageable. Basically, I'm in the conditioning part of becoming the mom of 5. I will be fine again when my floors are swept and vacuumed at least 5 times/week. Keep in mind, they need it 5 times/day. (If the reader is asking herself, "Where is this going?" The blogger must answer, "How should I know? I've been interrupted 7 times with requests for food/drink/backscratching and a band-aid.")

Oh right, fine.

I mentioned before that the general assumption is that I am overwhelmed with Mariana's DS. I am not. Yet. I have no idea what the future will hold, but for now, I am the normal post-partum level of hormonal and overwhelmed as always. Mariana adds to my stress because she is a newborn and I am tired. I look at my baby, and I can't even see the Downs markers anymore. I have erased countless pictures because I see the markers that I can't see in real life. I am frustrated that my camera can't catch Mariana's curiosity and the understanding in her eyes. She has that same look all newborns have, as though she knows so much more about what life is than you could ever hope to. I want so badly for my friends and family to see what I see. I don't want them to see the Downs first. It's there, and it matters. It isn't honest to pretend it's no more significant than a hangnail. But the humanity gets so lost in the diagnosis sometimes that I feel a little desperate to communicate to the world how fine we really are.

But these moms who have special needs children, I trust them. I trust I need their uplifting comments, if not now, later when I have to convince a professional to act. I trust that I will have days I am going to want to scream in order to be heard. I trust that I am going to feel like life is too hard and perhaps that entire chocolate cake in the bakery will make it easier. I trust that I might go ahead and eat the damn cake and watch a sad movie to boot. I trust that God gave me this awesome community because I am as weak as I think I am.

For now, I don't need cake. I don't feel like life is too hard. I am really fine. When the time comes that I am not fine, it is comforting to know this community is there. It feels so safe to have families that understand all the frustrations that come with this journey, especially the not-so obvious ones. It is wonderful to have comments of encouragement from people I've never met who just know I'll need them someday. It might just keep me out of the cake.


I am not kidding, I have been interrupted so many times during this post, I am not certain of its coherence.  I am certain if I didn't have spell check that it would look as though one of my children typed it.