30 March 2016

Gathering Ideas

With all my new computer blogging opportunities, I'm wondering what exactly you guys want to hear about! I could talk about my new ring sling compared to my pocket sling and Ergo. I could talk about breast feeding or postpartum depression. I could talk about crafting. Or baking. Or the new house. Or I could philosophize on something. I put together a few polls with some specific questions I have. Please vote! And leave feedback in the comments section! Leave it anonymously if you have to, just give me your thoughts!

Should I blog more about Down syndrome?


Do you like to read about "mundane" mothering topics like breastfeeding and baby carriers?

free polls

Should I blog more about crafting and baking?

Yes, both
Only crafting
Only baking
No, that would be terribly boring
trivia quizzes

28 March 2016

Depression and Salvation

Having wireless Internet for the first time in my new house is awesome. Today I am blogging from my basement, lounging on the couch while the girls enjoy the bubble blower they got for Easter.

A few days ago, I was reading some of my old blog posts and I was struck by one major thing: I was really freakin' depressed after Eleanor was born. I could see bits of cheerful, baby-loving me peaking through the thick, gray clouds...but wow...and I thought I was doing a decent job coping.

I was doing the best I could with what I had at the time. But reading them now, it's obvious to me how desperately hard I was struggling. It's no wonder I think three kids is easier than two! When Matt went back to work after Eleanor was born, I cried. After Theodore, I practically kicked him out. "Hey, I'm feeling fine. If you want to go in next week, I'm going with that."

Reflection is an important part of growth. How I feel now, how I felt after Eleanor. Was it so obvious to you as readers?

After I started on antidepressents, lots of emotions changed for me, but the most surprising one was how much more at peace I felt with God. I just felt so much more joy over my blessings and it was easier (though still not easy) to accept the things I didn't like.

I can see how such a statement could be interpreted in a dozen different ways, namely that God is a figment of our imagination and easily manipulated by medication/brain chemistry. While I disagree and think my disordered brain chemistry was causing me to struggle with everything, including my relationship with my creator, I do really wonder how much untreated mentally ill people are responsible for their actions. It's a hot topic right now in America and obviously one that is not easily answered. We already know that we can never earn or deserve God's mercy, combine that with all the sin and struggle and mental illness around us, and I wonder how free will can play any kind of role. Aren't we all fated to struggle and fail? Why do anyone's actions mean anything? If I continued to refuse treatment and struggle with my anger toward God and the Church, how would that affect my salvation? If I can just pop a pill each night and dissolve the sin, is it really fair to penalize me for the sin? Are those who don't have access to treatment given more mercy? The same amount of mercy?

I don't have a pretty red bow for this post. No easy solution or blinding insight. I wonder about these questions, but I don't wonder about the validity of my faith. Blind faith is one of things that I'm good at. There are things I don't get or agree with, but I can still follow the voice of my Shepherd. But to draw this post back out, so as not to end in such a deep black hole, I am very thankful that my heart finally softened toward antidepressents. I am super happy that I can dependable love my life everyday, without the awfulness of depression flooding in and ruining the happiest of days.

* * * * *

I have written up a post filled with super-short survey questions that will go live Wednesday morning. I am wondering what topics you guys are most interested in reading about. My fingers are itching to do some typing and these questions will help give me some direction. Everything is anonymous, so please give me some feedback! 

25 March 2016

The Deeper Harm

I hate those "feel good" posts that go around Facebook about Down syndrome. You know the type: "Opposite team lets boy with Down syndrome shoot basket." Just Google "Boy with Down syndrome basketball" and your screen will flood with such posts. Did you hear about the girl with Down syndrome who made it on the cheerleading squad? What about the boy who was elected home coming king? Local news stations blast these stories with pity-covered enthusiasm. Hey look, boy with Down syndrome graduates high school! Local art studio recognizes painting/poem/award by girl with Down syndrome!

These stories do not warm my heart. They don't fill my soul with hope for Abigail's future. They make me angry. I block them when they pop up on my Facebook wall. I scroll past the links on news websites. To me, the headlines might as well read: "Society does favor for poor retard child." "Handicapped kid does something normal!" "Let's patronizingly applaud and pat ourselves on the back now."

I want people to stop having abortions when they receive a prenatal Ds diagnosis. I think these stories harm that goal. When we are excited about mundane things, it begs the question: Was there a chance that the mundane wouldn't happen?

When Abigail was a few weeks old, we ran into someone who'd recently heard about her dianosis. "It's okay," she said. "I know someone with Down syndrome and she says 'please,' and 'thank you,' and ties her own shoes!" My heart dropped - I didn't know I was supposed to worry about that! Abigail might not have basic manners?!

I don't want pregnant moms feeling that way! As the mom of an almost five-year-old with Down syndrome, I can assure you that she says "please," "thank you," "excuse me," and "I'm sorry." She helps set the table, she takes her plate to the sink, and we're working on asking to be excused from dinner. Basic manners are not an achievement for her and they were never a concern.

It's blatantly obvious that "charity case stories" do not promote inclusion or recognize someone's achievement or promote awareness. I think they are shallow opportunities for society at large to feel better about itself without ever leaving the couch. "Look, we helped the less fortunate! What a great community we are!"

And I think the ego boost comes at the expense of progress for those fighting for recognition. Like finding out your dad let you win Monopoly. Or that the cool kid asked you to prom because he felt bad for you. It implies you couldn't win on your own or land a hot date or succeed by your merits. To those with any kind of special needs, these stories have a terrible underlying premise: people with Down syndrome or other special needs can't do normal things, so we, society, need to cheat now and again to help them out.

There are stories that contribute something positive. The ones that recognize hard work. Like Madeline Stuart, a main stream model with Down syndrome. Or Tim Harris, the only man with Down syndrome in the country who owns his own restaurant. I also like stories that promote inclusion. Like when Pampers and Target use models of all races and abilities in their marketing. And I love stories that raise awareness, like the recent Olivia Wilde ad that challenges the way people see people with Down syndrome.

But that doesn't mean I need them blasted in my face either. It's possible to sour a perfectly awesome story by overreacting. "Oh my gosh, Olivia Wilde is a role model!" It yanks the focus away from the message - people with Down syndrome are (gasp!) people - and slaps it back across society - "We are so smart and good for recognizing Wilde's recognition!"

I think the struggles my family and I are encountering when Abigail meets the world are branches on the same tree that women and blacks and religious people and Hispanics and the Irish in the 1920s and moms of large families at the grocery store, and heck, the kid with glasses on the play ground during recess all face: discrimination. Because the moment Adam's pearly whites sank into that piece of juicy fruit, humanity suddenly forgot that we possess a certain dignity. You get it for merely existing: a dignity that you don't have to earn and you can't lose. It's from God and whether or not the world recognizes it, you still have it.

I know that this world will never recognize Abigail or people with Down syndrome as equals, but that isn't going to stop me from trying to make it happen. And today that means tearing down fluffy articles that make society feel better at the expense of my daughter.

24 March 2016

Prepare for Posts...

Prepare yourselves for way more posts, my friends. After spending way too much time taking my 6-year-old MacBook Pro around trying to fix its multiple issues, I finally decided to let her retire with some grace. After spending much more time deciding what exactly to replace the old girl with (a new $1200 MacBook Pro not being in the budget), I decided on a simple Chromebook and my $100 Groupon deal just arrived (this, in fact, is the first thing I'm doing on my new computer!) I went from a huge, 17" computer that I used to make a living to a tiny, 11" Acer that will serve as a writing and Internet browsing device. To supplement my itty-bitty 16BG hard drive, I also bought a $50 1TB passsport harddrive. I once again have wireless and have set up my computer on the peninsula bar in the kitchen - one of the few places my children can still not yet reach.

I have a new topic all ready to be written out: Why I hate the "feel good" Down syndrome stories that circulate. You know the ones - "opposing team lets boy with Down syndrome score a basket!"

My entire family is sick (even poor Foxy Man), so this post will probably appear tomorrow rather than tonight.

Yay for progress!

21 March 2016

World Down Syndrome Day 2016

Happy World Down Syndrome Day! We spread awareness on March 21 (3/21) because Down syndrome is diagnosed with 3 copies of the 21st chromosome are present. As in keeping with our tradition, I’d like to share a brief reflection on our lives this past year.

“And then, of course, we’ll do some genetic testing,” the nurse said as she unwrapped the blood pressure cuff from my arm. She was describing for me the upcoming OB/GYN appointments. I already had a child with Down syndrome and a miscarriage in my history. Naturally, everyone in the office assumed I was dying for a doctor to stab my pregnant belly with a huge needle.
“Nope, we’re going to pass!” I said with forced cheerfully.
She looked at me like I was crazy. “But aren’t you worried you’ll have another special needs kid?”

Everyone thought I was crazy. They pestered me at every appointment until it was too late for an amniocentesis, and then they said things like, “I see you refused the amnio,” like I’d won the lottery but was insisting on living in a two-room shack and eating Ramen noodles. It was a question I heard a dizzyingly number of times: “But aren’t you scared?”

And the deep down truth is that I was not scared. Not even a little.

So what if we have another child with special needs? The scar running down the front of Abigail’s chest is a testament to our strength. The small patch sewn on the walls of her tiny heart, the pink orthotics that stretch out her sparkly sneakers, the stack of appointment cards all witness our ability to thrive despite our special needs.

There is no big secret to surviving as a parent of a kid with Down syndrome. My life looks a lot scarier than it really is. I never would have believed it the first time I held Abigail. My heart was in my throat, choking off my words, eels slithering around my stomach, turning me nauseous. She has the dreaded curse (hushed, whispered) Down syndrome. Nearly five years later, I well know that no matter what happens to my kid, she’s still my kid.

There is a balance that I keep. On one hand, Down syndrome means serious business: heart defects, a spine and neck that are dangerously flexibility, early onset dementia. I was at a playgroup prior to Abigail’s heart surgery and the other moms there were honestly freaking out as they tried to pick a nursery theme. I realized in that moment that I will never fit in with those moms again. The day you have a conversation with a doctor about your daughter’s heart failure is a life-changing kind of day. Sometimes I am overwhelmed. Because on one hand, Down syndrome is a Big Deal.

But on the other hand, Down syndrome is trivial: Abigail walks, talks, colors on the wall, says “Please” and “Thank you,” and bosses her little sister and brother around on the regular. Statistically, she is extremely likely to graduate high school and get a job. There is a chance that she will live on her own, at least for a little while, and I just read a story the other day about a man with Down syndrome who sold his restaurant in Arizona so he could move north to marry his sweetheart. Once when Abigail had to have her blood drawn, doctors sent us to the children’s cancer ward (apparently the staff there were better trained for baby vein finding), and we had to walk through a circle of beds holding tiny, bald children, whose arms and legs were as skinny as wooden pencils. Towers holding plastic bags and tubes pumped drugs into their scrawny arms. With all that Down syndrome includes, it does not entail praying my child won’t die; wondering how to explain death to preschool siblings; buying a child-sized coffin. It is safe to say that at the end of the day, every day, I will be reading yet another rendition of Goodnight Moon and tucking Abigail into her toddler bed with her pink and white blanket. On the other hand, Down syndrome is a little deal.

I’m trying to raise Abigail and her sister, Eleanor, and brother, Theodore, to be productive citizens of the world. She comes with some unique challenges, sometimes they are harder and scarier, but most of the time they are not. As the parent of one special needs and two typically developing children, I can confidently say that all are equally stretching me to become more patient, forgiving, and selfless in that demanding yet endearing way that all small children have.

I will fight for my kids, lay down my life for my kids, and use my own personal allowance to buy them ice cream. At the end of the day, these babies are my babies, and that is all my Mama Bear heart cares about.

14 March 2016

5 Minute Monday

I have typed up and deleted two blog posts over the course of several interrupted hours. So here goes, five minutes of my thoughts and then I'm hitting "publish."

I'm struggling. With my selfish desires - I want to read! I want to crochet! - with house projects - I want to install the GCFI outlet! I want to vacuum the basement! - and with the budget - But I want a bigger car! But I want to fence in the backyard! But my computer is dying! I'm struggling with the baby weight - I need to loose weight! He's only three months old!

My house is wonderful, my life is going very smoothly. Apartment Jacqueline would be happy to have these new problems. I am frustrated with myself for spending too much time obsessing over the wrong. I struggle with relaxing, laying back, enjoying the day-to-dayness of life. I need to learn to balance the time spent cleaning and working on projects with time spent enjoying the moment. I need to learn to regulate my anger when I don't get to work on something I wanted to do. With each new life responsibility (a house and a baby), I am going to have less and less daily me-time, as I spend more and more time after the kids go to bed finishing up chores, etc.

Five minutes is up. I deleted a paragraph two times and tried to rewrite it. I am struggling with petty, frivolous first world problems, and I don't know how to stop the ridiculousness.

02 March 2016

Busy Life

I have not made one iota of progress on the office since my last post. I never crocheted a seat cushion for the old kitchen chair, rehung the picture that fell, or even grabbed a box of tissues to keep in there. My life is so very full, I scarcely even have time to blog!

Cost of supplies:
-I spent $16.80 on spray paint, two rollers, and some face masks at Meijer. Meijer is an expensive place to buy supplies, and I really don't recommend it.
-Then I spent $9.49 on two more cans of spray paint, two paint tray liners, and two latex gloves at Ace Hardware.
-Next came another $18 at Ace for white paint
-$2.12 at Meijer went to poster board for a finger painting project the girls and I did to hang on the wall. (We already had washable finger paint.)
-Lastly, I spent $21 at Target on a lamp. The total comes to $67.41. Our budget was $50, but I stayed true to my word and took the additional $17.41 out of my freespending allowance money.

So I have the three little ones, plus chores in this humongous house (1471 square feet!) take longer, and then I’ve been filling up my free time watching GOP debates, crocheting, and reading all the Cesar Millan books I can get my hands on because I desperately want a dog. Plus I am hosting Easter next month for 23 people and I’ve started planning the menu, Easter egg hunt, and a family-wide game that will appeal to everyone in the 3 month to 64 year age range I’ve got. (Okay, Theodore can’t really play, but I think even Abigail, Eleanor, and their similarly young cousins will have fun too.)

Plus I am still juggling some of the “new house” things, like I never got a sticker for my license for our new address, which means I can’t request Theodore’s birth certificate. We’ve been having some trouble with the electricity in some rooms, so we need to have an electrician out, and I still need to get a towel rack for the bathroom. I wonder what other moms do: do they take all of their kids with them to get their hair cut and stand in line at the Secretary of State’s office? What I’ve been doing is waiting till Abigail goes to school and then run one errand per day in the 1.5 hour time gap between her leaving and Eleanor’s nap. It’s slow, especially with all these snow days preventing me from going anywhere.

My life is full of very good things. Some days I feel like I will never get anything done and will never do anything I want again. Other days, I feel like I am kicking butt and taking names. (Today is more the latter). I am reminded of those Toyota commercials where the parents are too busy out living to be online. I am so happy that my life keeps moving in these amazing directions that are keeping me off the Internet.

Blogging would be a higher priority if it were easier to get my computer online. Long story short, my wireless card is broken and the router is not in a convenient place to blog.

Shall we continue with some photos? In the absence of writing words, I have been snapping pictures. Everyone was sick and the girls were both craving attention, so after Theodore was done with the Ergo, I put him down and wore both the girls. 51 pounds of kid.

I love that hightops are “in” right now! I still have the greatest shoes on earth: rainbow sequin hightops with purple sparkly laces, which fit Eleanor now. But I also found some navy and white polka dot high tops for Abigail for a mere $13 at Sam’s Club!

I chopped Abigail’s hair off myself! She looks way cute with short hair, plus it’s easier to care for. She hates having her hair brushed, plus she has a bad habit of chewing on her hair, so one side is always ragged. Short hair is better all around, and I bought some barber sheers and did it myself this time. I need some more practice, but she's too little to care right now that The left side is a little longer than the right side ; D

Theodore is definitely my biggest baby, but he's only 60th percentile, so he's not much bigger than most boy babies his age. Everyone has a different opinion about if he looks like Matt or like me. He actually reminds me a lot of a cousin of mine. It's pretty strange recognizing your extended family in your children.

These two are best friends.

She absolutely dotes on him, insists on helping me pick him up, carry his carseat, wipe his face, change his diaper. She scoots his Rock n' Sleeper over to her chair at the kitchen table so she can talk to him while she eats, she dances for him, she reads books to him. And he loves her back. He searches for her when he hears her voice, he smiles at her, he stops crying when I prop him up so he can see Abigail.

It's exactly how she was with Eleanor, except now she's old enough to do more. I'm always wondering what the kids will be when they grow up, and that questions is a little more complicated with Abigail, obviously. She so nurturing and so desires to be helpful. Plus she loves books. I wonder if she'll work in a library. Maybe she can work in the children's area, reading books during story time. Maybe she'll work in a hospital, helping in the maternity ward on the NICU. Maybe she'll be an aide in a day care, snuggling with the babies. For now I'm just going to do everything I can to support their lovey little relationship.