24 March 2017

Joy, joy, joy

I have been living in my first home for one year and two months, and I am still so happy here. I did two solid hours of yard work today, with Eleanor's help, of course, while Theodore napped. Two hours in the slightly breezy, unusually warm weather, before I came inside and threw open all the windows. I don't think there is anything that reminds me how blessed I am to have this house like clean counters and open windows. Thank you, Lord! I want to enjoy your great gift until my hair turns gray and my joints wither up with arthritis. I feel very blessed to live here, to care for this house and fill it up with life.

The large windows and hardwood floors (currently covered in toys). The huge dining room table, supporting baskets of laundry to fold before dinner. The of-my-dreams kitchen with it's real, closet-style pantry and shiny counter tops. The three cozy bedrooms with plush carpet, actually decent because I picked up all the toys this morning.




I love my home's location, I love it's pretty spacious yard, I love it's gigantic magnolia tree in the backyard. I love thinking about my kids growing up here - as we pick up toys and get ready for bed in the evening, I look out the windows and imagine how my kids will study this view - the angles of the neighbor's house from this vantage point, the weeds that only grow on that side of the house for some reason, the trees I can't see from my bedroom's windows. This is the view of their childhoods. They stand on this plush carpet and peer joyfully out of them when the garbage truck drives by, and one day they'll stand on this same floor and glare angrily out them because they're teenagers and they're mad at me. And when they come home to visit from college and after they get married, they'll peek in their rooms to see how I've redecorated them and they'll look out the windows and nostalgically see that nothing there has changed.

From spring last year - our first spring in our new house
My house was built in the 50s, but as far as we can tell from neighbors' and local repairmen's stories, has never had family in it - bustling with three kids, a cat, and a dog. So this is the next ring in the life of the house - chocked full of baby gates and plastic slides and one very blessed family.


21 March 2017

World Down Syndrome Day 2017!

Today, my friends, is World Down Syndrome Day! A person has Down syndrome when they have three copies of the 21st chromosome, so we celebrate on March 21 (3.21)! Today is the one day a year I like to shout from my rooftop. I thank you sincerely for the use of your ears on this day. And (this one is for you, Aunt Ellen!) you absolutely have my permission to send this post on to anyone you like; I am flattered and humbled if you think my words will be of benefit to anyone else.


I am starting to forget the past. I can’t remember what day Abigail had her heart surgery. August something. I have to look up in my old planner a day that used to be burned in my memory, a deep scar I thought I would remember forever. But every August something, I forget that I wanted to make a heart-shaped cake and celebrate a Heartversary. Lots of times, I can’t even remember all five of her heart defects anymore. Scared, Depressed, New Mom Jacqueline used to doodle pictures of anatomically correct hearts, then add in Abigail’s defects in case we gave birth in a new state before our medical files could reach us. I even wrote a book about it, and I still can’t remember all her heart defects. I am starting to forget the names of the techniques we used in therapy. There was this really good one that her speech therapist in Chicago taught us - it was so great that I still use it with my kids and with friends’ kids, but try though I might, I can’t remember what it was called.


There was a lot of pain in the beginning. A lot of hurt and bitterness and depression that I had to work through. I used it as fuel when we practiced physical therapy during the week or when I needed to fight to get Abigail’s insurance to cover something. I must have used up all the bitterness as fuel because now I’ve found room to paint over the past with big, glossy brush strokes of happiness. I remember Abigail’s first sign - it was “more” and it was for Goldfish crackers and she was 18-months-old. I remember how much she loved the water when we lived in Florida and how much she loved people watching from the baby carrier I wore in Chicago. Abigail still loves books and when Theodore chucks one across the room, I remember how little 5-month-old Abigail would sit very still in my lap for a very long time while I read every book on her bookshelf.


I’ve even managed to romanticize the painful parts with my sparkly paint brush of joy. Like that time at the ice cream shop when the clerk gave all the other kids a balloon but not Abigail. I look back and I remember how it was just me and her! Against the world! We were a team so strong and so loving that the world couldn’t bring us down. Maybe time healed my wounds. Or maybe the epic mess Abigail made in the basement just distracted me. You know, real life stuff.


I like to remember how much I forgot when I read my old blog posts and journal entries. I hope in five-and-a-half more years I’ll forget some of the struggles we are going through now. Like how I feel like we’re never going to get Abigail out of diapers. Or how every time she walks by a table with stuff on it, she sweeps her arm across and knocks it all off. All of it. Every. Time. Sometimes it’s difficult, going through right now, and a little scary at times, like talking about her spinal issues or waiting for the results from her blood work every six months or not knowing how the changing politics will change the opportunities available at school. But I know now that in a few more years, I’ll probably have to re-read this letter to remember it. I’ll just remember how she has memorized 22 Elephant and Piggie books. Or how she sings “Hallelujah!” really loudly, two beats too late at church every week. Or how she dances when she finds out she gets to do something really fun. Or how she high-fives herself if someone leaves her hanging. Or how she asks, one-at-a-time, her three blankies which episode of Sophia the First they’d like to watch and reports the answers to me. They usually want to watch the same episode as Abigail.


I forget because Abigail is a growing, changing person with complex thoughts and developing interests. Abigail keeps giving me these new joys to experience. I am slowly forgetting what it was like to be Scared, Depressed, New Mom Jacqueline holding a tube-covered baby in the PICU. I’m too busy reading Blondie her favorite book again, repeating the lines until I quote them to her satisfaction.

19 March 2017

Sheep & Co End of Season Sale

Crochet season is just about over, so I've photographed and created listings for all 74 of the items I have remaining from the Mom 2 Mom and craft sales. The entire shop is also on sale! Save 20% off your order of $25 or more with coupon code EOS2017.


I've got hats with ears, hats with sparkly buttons, hats with flowers, and hats with school colors.




 I've also got hats that match ruffly diaper covers. Definitely one of the cutest things I've ever crocheted.


I've got washable cotton market bags for kids and sparkly infinity scarves.


I've lowered the prices of most of my hair clippies too! I've got some cute pastels for Easter plus a few remaining clearance-priced Christmas clippies that you can score for 20% off as well.



Happy shopping, guys!

18 March 2017

Potty training post script

After a few days of successfully pottying in the potty, Eleanor suddenly refused to poop in the potty. Pee? No problem. Poop? She'd rather do it in her underwear. I Googled it, and apparently, it's a thing. "Be patient," I read. "Sometimes kids are afraid to poop in the potty because they feel like they are loosing a part of themselves in the potty too." I read about how I should let her sit on the potty in a diaper and poop into the diaper. "Take things slowly, you don't want to make things worse and cause your child to hold it in all day until constipation because a serious issue."

I call bull on that shit. (Hehehe.)

"We poop in the potty, not in our underwear!" I lost my patience. I took a deep breath. "If you poop in the potty I'll give you candy." Eleanor ran to the bathroom.
"I peed, Mommy!" There was the tiniest of yellow puddles in the training potty. "Now I want candy!" She exclaimed excitedly.
"No. You only get candy when you poop."

Later that afternoon, she came running out of the bathroom with her pants around her ankles. "I pooped on the potty, Mommy!" She did, too. And she got candy.

And she has successfully pooped in the potty and gotten a handful of chocolate chips ever since.

16 March 2017

Outsider

It seems like everywhere I go - every play date, get together, hang out, is dominated by parents of special needs kids. It seems like every conversation revolves around moms venting about their struggles. What the diagnosis is or is looking like, what therapies they are trying to get, what the daily struggles are like. ADD, ADHD, ODD, SPD, Autism. Do you want to know something funny? I feel like I don't fit in. I have a hard time relating. It looks to me like their whole lives revolve around their kid's issues and mine doesn't. I mean, Down syndrome affects us on a daily basis, but I wouldn't say my life revolves around it. Even though we all have in common that our families are not typically developing, it does mean what goes on in our families is the same.

Sometimes I wonder if it is because my family's issue is easy to diagnosis. Down syndrome is there or it isn't there, and a simple test will give you a cold hard answer. There is no wondering, no second opinion, no outgrowing it, and definitely no gamut of medications to try to ease the symptoms. I don't know one single person outside of Abigail's class and my Down syndrome support group who has a child with Down syndrome. I never run into these moms at the library MOPS group. These other moms are all fighting a much different type of battle.

I also wonder if it is because our long-term goals are so much different. There is a very high expectation that children with ADD, ADHD, ODD, and SPD will all get steady jobs and move out of their parents' homes one day. Autism does not even definitively squash empty nester plans. There is a very small chance that Abigail will live independently, but it is significantly more likely that if she does not live with us, it will be because she's in a group home. There is little chance she'll be able to secure a job that fully covers her expenses in life. I've known this for 5 years and 10 months now, and I have come to terms with it. It's okay. My expectations for her and my future are much different than moms of kids with different diagnoses and I wonder if that plays a role in our daily behavior too.

I just think it's kind of funny that I can sit in a room predominately made up of moms of special needs kids and feel like I don't fit in. It just seems like no one has a child with Down syndrome.

I do think there are lots of benefits to having a diverse group of friends - talking to a bunch of moms of kids with Autism, for example, can help me see my blessings (Abigail doesn't have the fine motor skills needed to pick locks, thank goodness) and help me reflect on my unique struggles, which can help me overcome them or at least come to terms with them. It's also nice to have a group of mom friends with our exact diagnosis too. Down syndrome requires significantly more medical intervention that most other special needs I run in to, and it's comforting to talk to another mom about acid reflux in a non verbal child and swap pediatric gastroenterologist contact info.

Even as a kid, I've always been a bit different and a bit of an outsider, and I think that experience comes in very handy as the mom of a child with Down syndrome. And as an introvert, I'm also completely comfortable being alone. It really does come in handy sometimes.