Saturday, November 1, 2014
Friday, October 31, 2014
As a whole, I have mixed feelings about Halloween. The world is turning into such a tricky place, it's hard to love a holiday where I have to worry about my kids being drugged by candy given to them by someone living on our street. And, if the candy is legit, it's hard to ration the candy for my kids and resist it for myself! But, one thing I really love is creating costumes for my family.
We did the run-of-the-mill (at least in the Layton household) eye guessing game for costumes this year. Leah gave us plenty of "no" answers. But when I suggested pirate, she stared me right in the face, as if to say, "aye." So, the three elder Laytons dressed as a pirate clan, and, as everyone knows, every good pirate clan needs a colorful parrot to, well, parrot every thing they say. And we have one of those living with us, she just didn't have feathers yet!
So, I set to work making a tattered skirt for our youngest pirate lass, with a sash made from her golden treasure. And we gave our parrot feathers. The only problem is, our parrot talks, but does not sit still on a perch like a parrot should, so we had to trace her body on a piece of paper to get an accurate measurement for wings.
We debuted our costumes at the annual church trunk or treat (which we rushed to directly from family pictures, hence Kate's fancy attire) the Saturday before Halloween. Kate also took her candy-passing-out obligations very seriously. And I seriously failed at my attempt to give a pirate-looking "aaaaaargh" face with Leah. You can't win 'em all.
Leah's school had a fabulous parade and her class held a fun party. Leah's costume was, apparently, the big school secret. She refused to answer any questions about her costume (she giggled with closed eyes every time someone asked about it) and everyone was dying to know what she was going to be (we're talking classmates, teachers, kids from other grades, the nurse, the dean, everyone)! I was a celebrity as I walked in with her pirate clothes in my bag, and the whole class was squealing with excitement as her costume was revealed. I'm pretty sure Leah didn't mind the extra attention. Speaking of extra attention, Kate got some of that too...and she minded.
The school day events tuckered Leah right out, so she took a power nap before we ate dinner and headed out for the evening.
For actual trick or treating, we set out a bowl of candy at our door (with the perfect amount of candy, apparently) and headed to a friend's neighborhood where a fabulous 13-year-old daughter of our friends took her two little brothers along with Leah and Kate trick or treating with a few of her friends. Ryan and I got to stay inside with her parents (where it was warm) and drink Hungarian hot chocolate. Pretty sure I could get used to that!
At the end of the day (or week) of celebrating, there are no mixed feelings here! A happy Halloween season all around.
Thursday, October 30, 2014
Today I wrote the following on a picture I posted on Instagram, "Five years ago today, I answered a phone call that brought be to my knees, officially bringing Rett syndrome into our lives. It was one of the loneliest and lowest days of my life. Today, 25+ faculty and staff members at Leah's elementary school gathered on the track after the final bell to run a 5k for and with Leah. My life has taken a course I never could have imagined but I am so grateful for all the wonderful people we have met along the way. Today, I felt the opposite of lonely..."
Sometimes when I think about that dreary day in 2009, it still takes my breath away. And not in a good way. In an I-don't-remember-how-to-
breathe-because-my-life-is- spiraling-out-of-control kind of way. If I could travel back in time and kneel down on the kitchen floor with 2009 Maren, I would. I would hug her. And cry with her. And I would tell her it will be okay. Because goodness knows that Maren on the floor didn't feel that way then. I wouldn't give her false hope or fill her mind with rose-colored depictions of what day-to-day life will be like in her future, because that wouldn't be honest. But I would tell her it will be okay.
I would tell her that yes, without a doubt, it will be hard; probably the hardest thing she will ever have to face. It will be a trial she will wake up with her every morning and fall asleep with each night, forever. I wouldn't tell her this to scare her or aid in any more lost hope than she had just given up with the phone call she just finished. I would tell her this to prepare her.
But, when she was ready, I would tell her she won't even be able to imagine the incredible people she will meet in the world a (yet to be made) friend Colleen coined, "Rettland". She won't be able to fathom the number of lives that cherubic little girl in the next room will touch.
I would tell her about the incredible teachers and aides and therapists Leah will have in every state she lives and in every school she enrolls (oh, right, 2009 Maren...you will move 3 times in the next 5 years and Leah will go to 5 different school programs).
I would tell her about running marathons and 5ks and strollathons and raising thousands of dollars for research and awareness.
I would tell her about eye gaze technology and how in less than 5 years, her daughter will start to read.
And I would tell her that in a short amount of time she will not only be reaching out to other Rett families and asking for information and support, but newly diagnosed families will be reaching out to her.
I would tell her Leah will be stronger and more courageous and more hard working than a mom could ever dream. And happy. She really will be happy.
I would tell that Leah WILL sleep through the night again. I promise.
I'd tell her the support and love her family will receive will often be overwhelming and will almost always leave her breathless. This time, in a very good way.
I would tell her she will make mistakes and fall asleep on a tear-stained pillow more often than not. But the good days will slowly start to outnumber the bad. And the tiny, broken pieces shattered all over that kitchen floor will, eventually, start to put themselves back together. And it will be okay.
That's what I would tell her.
I can't help but think what 2019 Maren would tell me now. She could tell me about the challenges the next 5 years will hold, because I have no doubt there will be challenges. But she could also tell me about the progress in clinical trials and technology. And everything that led to 6th grade Leah. She could tell me about big milestones and the little things that would only be noticeable or important to a mother. Because I have no doubt there will be plenty of those too.
In the meantime, we'll experience the big milestones and little leaps as they come, because we're on this path together.
Happy Diagnosis Day, Miss Leah.
Monday, October 20, 2014
I love school pictures. I always have. I don't know why. There is nothing overly attractive about an awkwardly strained neck and a harsh background that rarely matches the subject. But I love them.
And I love them even more when that first grade subject is beaming with happiness...on the first take. It just radiates from her insides!
It doesn't hurt when I get a package full of 30 of those beaming faces. Well done, first grade. Well done.
Friday, October 17, 2014
Once a week, I get to watch the youngest two kids of one of my good friends. I look forward to it every week. Usually our mornings are filled with play dough and snacks. Often a good fight with countless shouts of "Mine! NO MINE!" is involved. There is imaginative play, dance parties, book reading and dress ups. Laughter, tears and every emotion inbetween, which is expected when two two-year-old girls play together, right?
But today was the best yet. After the aforementioned snacks, play dough and fighting, I rolled out my trusty IKEA paper and traced the outline of the girls' bodies for them to color. I imagined they would be interested for about three minutes and then wander off to another activity. I'm happy to report I was wrong.
Both girls took their job of coloring their self portraits very seriously. Kate spent a long time coloring her toenails, fingernails and eye "browns". And Abby was meticulous down to (telling me how to color) the tiara-turned-necklace, beloved (giant) pumpkin rink and solo-jeweled shoes (the jewel on one shoe was tragically lost). They were so proud of their final creations.
My house usually looks like a crime scene after these girls play together, and often it sounds like one. But today, the only evidence were two petite body outlines. And that is a line too cute to not cross.
Saturday, October 11, 2014
We spent the most glorious autumn afternoon at a local apple orchard. We picked 20+ pounds of fresh, crisp apples. We wandered aimlessly through the tidy rows of trees (nestled next to the tidy rows of corn, of course). We sat on hay while riding a tractor (a green one). We admired the farm animals (Kate from a distance, Leah up close and personal). We basked in the radiant October sunlight (have I mentioned how much I love October?).
And we will be going back next year (a little earlier in the season so we can snag some Honeycrisp).
And now for an abundance of pictures. After that, I'm off to make applesauce, apple juice, apple crisp and apple chips. I'll be in the kitchen if you need me.
Friday, October 10, 2014
Each week, a student in Leah's class is designated as the "Star Student" and everyone gets to learn about him/her throughout the week. This week was Leah's turn. We made her a poster all about her favorite things, how she spends her time and just some Leah facts (has your 7 year old been to more than half of the 50 states?!). My favorite was that we created the poster saying she had lost 6 teeth...and she lost one 10 minutes before the bus came as we were brushing her teeth Monday morning, so we had to quickly change the poster. She thought it was hilarious!
The star student also gets to bring home a special book bag full of Little Critter books...and Litter Critter himself. We were able to take pictures of Little Critter helping Leah do all the things she does in a normal week: reading at bedtime, eating, sleeping, swinging, dancing and climbing on the ginormous tree the landlords cut down in our backyard. Doesn't everyone use a giant, dead tree as a play structure?
Her class had a Q&A and asked her lots of questions, which she was more than happy to answer. It was a great week for Leah, who definitely doesn't shy away from being the center of attention. Love that girl.
Wednesday, October 8, 2014
It's not a newsflash that I love my birthday. I mean, anyone who has spent any time with me in the last 33 years knows I love my birthday. I love all birthdays and I love celebrating them! And my birthday was perfect from beginning to end because of wonderful people the world over who took time out of their days to celebrate it with me. From friend dinners to Facebook, texts to treats, flowers to Facetime, candles to cards, (perfect) weather to well-wishes, lunch dates to long distance phone calls, mail to meals (cooked by my main man), it was wonderful. Thank you for making 33 magical from the beginning.