Friday, October 31, 2014

Halloween in a pumpkin-shell

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.   

Team Leah Bean Virtual 5k (the first, ever)

Each year as October approaches, I feel a bit of dread. I know, I said October and dread in the very same sentence. Strange. But October marks Rett syndrome awareness month and raising awareness and funds are just not my forte. 

I am lucky to be surrounded by so many Rett moms and families who thrive on spreading awareness, working for Rett organizations and foundations and raising funds toward treatments and a hopeful cure. It seems they live and breathe for it. But my little introvert self just wants to crawl in a corner and close my eyes until it's over. 

Throughout the past two years as we have reached out of our comfort zones and raised funds and awareness as a result of running on the Team Rett for the Boston Marathon, we have had so many people ask how they can continue to be involved, even from afar. So when I suggested a virtual 5k in honor of Leah and to raise funds and awareness for Rett syndrome, we immediately had multiple people on board. 

I went in with hopes of maybe 25-30 runners, raising a few hundred dollars. And when sign-ups closed a few days before October 1, we had 127 people signed up. Multiple times, as I'd receive an email saying someone had signed up, it would bring me to tears. The steady increase in numbers overwhelmed me with gratitude and humility for which I don't think I will ever have words. 

The kinds words written in support of Leah and the impact she has had on others was enough to make this mom's heart burst with joy. 

And then the hashtags started to roll in. #TeamLeahBean5k2014 brought in probably 75 unique images, picturing more than 100 runners. Family and friends from all walks of life. Walkers, joggers and runners from at least 15 different states and 5 different countries. Riders in wheelchairs and strollers. Veteran racers and brave souls participating in their first-ever 5k. Some on treadmills. Some on powerchairs. Solo runners. Families. Large, organized groups. All sporting their kelly or seafoam green shirts and running for our Leah. 

Four our little Leah. 

I really hope you know how much your support means to our family. That every time we see these pictures or see you sporting your shirt, our heart swells with gratitude. And I hope you know that your donation and your support made a difference, and continues to do so.

We will run for Rett until Rett is no more. And we're so grateful you're running alongside us. (And we hope you'll join us for our 2nd event in 2015!)

*The images displayed here aren't all that were posted. For some reason, certain social media sites that shall not be named weren't letting me access all the pictures with our hashtag??? If your picture is missing, or if you still have one you never sent, please let me know!

Thursday, October 30, 2014

Diagnosis Day take 5

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 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 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 her 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. 

Wednesday, October 29, 2014

On broken fingers and delinquent parenting

Thank you, thank you, I hereby accept the Mother of the Year Award for 2014. 

Three weeks ago, Leah was at an activity through a respite organization in our area. She goes to activities a few times a month and loves the activities and the cool, college girl respite providers. About 15 minutes after she left, I got a phone call from the organization saying Leah's finger had been accidentally slammed in a car door (her fingers are QUICK, I tell ya!). She was quite upset initially, but had calmed down and was watching a movie with the rest of the kids when they called. We decided to keep her at the activity so long as she seemed happy. 

When she got home, her finger was swollen and beginning to bruise. We put a splint on her finger and then said about 1,000 prayers that it would stay on despite her constant hand and finger stereotypies

We watched her finger for a few days. The swelling went down and the bruising ran its course; nothing looked unusual and Leah didn't seem to have any pain. 

So, we moved on. 

Until yesterday when the nurse at school noticed swelling again. Sure enough, her finger looked like a sausage about to burst from its casing. The nurse suspected some sort of infection since it had been a few weeks since the other swelling. So I took her to her pediatrician. He was unsure, so he sent us to the hospital for an xray. 

So we went to the hospital for an x ray. They told us to wait for the doctor to call back. 

So we waited. When the doctor called back he said he thought it wasn't an infection but that the finger was, in fact, broken, and that we needed to get her to an orthopedist. Only they don't have day-of appointments, so we'd need to go to the walk-in clinic that night. 

So, when Ryan got home, we piled in the car and waited again. When we saw the doctor, he said it looked pretty bad and thought it may need surgery, but he wanted a second opinion first and the other doctor would be in first thing in the morning. We were told to come back and we could be his first appointment. 

So, we put our tiny Leah to bed with a splinted, broken finger, three weeks after it had actually been broken. And I cried myself to sleep. 

In the morning, we went to the 2nd orthopedist. She told us that yes, it was broken. And yes, it was a pretty bad break. But, because children's bones heal so quickly, after the last three weeks it was almost completely the wrong position. To fix it, we'd have to re-break her finger and then surgically place it in the correct poision. And then let it heal all over again. The doctor thought that the risk of surgery would be greater than the reward in this case. 

So, sweet Leah was sent home with a still-broken-but-nearly-healed-in-the-wrong-position-splinted finger, simply reaffirming the fact that she is the bravest, most courageous and most easy-going child in the history of children. She is made of some tough stuff. 

But she still has opinions on the matter. 

Saturday, October 25, 2014

family picture time

Ah, family pictures. Everyone's favorite day of the year. 

Except Ryan's. And Leah's. And Kate's. 

Okay, maybe only my favorite day.

But Ryan loves them once he's done posing and the pictures are in his hands (or on his hard drive). Leah always miraculously delivers with her mile-wide, toothy grin. And Kate, well, she's Kate, and we love her. 

This year we had our pictures taken by a fellow special needs mom who we met at Up With Families last February. She is a photographer in the area and she was so great to work with - busy Leah, crazy Kate and all. 

It was really cold all week, but warmed up for the day of our pictures - we were actually getting a little hot! In an out of the beautiful Iowa foliage in an hour with reassurance that there was at least one shot where all of us were looking and smiling. I call that a success. 2014 family pics in the books. 

Friday, October 24, 2014

First grade sock hop

To celebrate the 50th day of school, the first grade classes at Leah's elementary held a 1950s sock hop. They all dressed the part from leather jackets and greased hair to poodle skirts and pony tails. 

I had an old skirt in my Halloween box that my mom made for me when I was a little girl. I talked it up and told Leah how great it was...and when we got it out of the box, we realized that it might have been great if Leah had been to years old. 

So, we headed to the fabric store, bought a yard of felt and got to work making a new one just for her. Purple, obviously.

And because we couldn't let the vintage skirt go to waste, we let Kate join in on the picture-taking fun. 

The actual sock hop was lots of fun. The kids played games having to do with the number 50, they limboed their limber bodies to the floor, and danced their little hearts out to the jitterbug, hand jive and more. 

I asked Leah if she wanted me to dress up to as I was volunteering. She gave me a very clear NO, so I didn't. But I think I'm not going to give Kate that option. Embarrassed or not, this mom is wearing a poodle skirt. 

Wednesday, October 22, 2014

Activity Days Recognition

Tonight I had the opportunity to celebrate the 17 young girls I have the pleasure of working with at church. These girls, ages 8-11 work so hard throughout the year to meet requirements and participate in activities to earn their Faith in God award. They work on Learning and Living the Gospel, Serving Others, Developing Talents, memorizing scriptures and preparing themselves for the future in many different ways. 

I've been working alone in my calling for a little bit, so it was just me and the girls who put this recognition night together. They were so great! We kept it simple with some crepe paper decorations and a caramel apple bar (SO easy, and a hit!). We decided on the theme "I Am a Child of God" as it is a main part of the theme they repeat each week at their activities. The girls were in charge of prayers, the theme, music and talks. Where else could you find such a group of capable kids!? I spoke briefly about the theme and gave each of the girls their own felt crown with the initial of their name on it. 

I truly believe these wonderful girls are daughters of God and I hope they always remember that! 

Monday, October 20, 2014

Clean Cut Jack-o-lanterns

We spent a fun Monday night as a family cleaning out pumpkins and carving them into Jack-o-lanterns. 

Ryan, Leah and I love to scoop out the ooey gooey insides and feel the slime squish between our fingers. Kate? Not so much. She precariously scooped with a spoon, careful to avoid getting any of the toxic slime on her dainty fingers and hands. After we carved, she grabbed her trusty wipes and proceeded to clean the pumpkins themselves. 

Our Jack-o-lanterns might not have won any artistic awards this year, but they sure were clean! 

First rate first grade pics

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. 

Saturday, October 18, 2014

Nauvoo in the fall

We took a "quick" trip to Nauvoo today so Ryan and I could attend tag-team sessions at the temple. I attended the first session, then we ate a quick lunch and drive around town (where I got to see the home of some of my ancestors) before Ryan headed in and I hung out with the girls. 

I decided to take the girls to Carthage as neither of them had been inside the jail before. The foliage was on fire as we drove around town and down the road that parallels the Mississippi River. By the time we reached Carthage, Kate had fallen asleep in her car seat. And if there was ever a child you should NOT wake unless there is an actual fire, it is Kate. So, we parked the car, rolled down the windows and Leah and I walked around the courtyard (about 20 feet from the car) to stretch our legs. 

Leah was so quiet and reverent and still. It was a fun moment to talk about Joseph and Hyrum Smith and this piece of our church history. 

On the drive back to Nauvoo, Leah fell asleep too. Those two are angels when they sleep.  

When Ryan finished, we picked him up and walked around the temple grounds. We feel so lucky to live near this beautiful and sacred building. I really hope Leah can go inside someday.