Saturday, November 30, 2013

November in an instant

November was a perfect mix of fast and slow, warm and cold, heartbreak and cheer, sad and silly. 

We were well, we were sick. Leah lost teeth, Kate grew some. I ran a little bit, Ryan had to stop running. We had a visit from family and celebrated Thanksgiving with friends. We danced in our living room (and at church when Kate went to nursery!). 

It was a month to slow down a little and then ramp up just before the holidays. With both good and bad, up and down, relaxed but still on our toes, November was pretty balanced...just as we like it.

thankful tree

This year, our family made a thankful tree. Bare at the beginning of the month, it slowly sprouted autumn leaves and the tree was filled with things for which our family is grateful. Though some of the leaves were things I never even knew about or thought I would need to be grateful for a few short years ago, it was a great reminder that our life is full and we are truly blessed. 

It was also great practice for Miss Kate to learn to abstain from touching decorations. We considered it training for the Christmas tree and it worked like a charm. 

Some of the things our family is grateful for: school, family, socks and shoes, a car, rain, books, music, the school bus, nursery (at church), horses, dance parties, food and treats (or as kate calls them, "teets!"), babies, teachers, good health, a house, binky ("beenty"), doctors, cheerios, kate, a job, banzel (Leah's seizure medication), dad's three girls, dad, mom, leah, "lo lo" (lotion), "nanas" (bananas), sunshine, primary and kate's red blanket ("bane-ty" or "mon-ty").

Friday, November 29, 2013

thanksgiving bust take four?

Thanksgiving has been a bust for our family for the past few years. Ryan officially declared it his "least favorite holiday." I was determined to fix Mr. Thanksgiving's reputation this year. Leah's seizures are under control. I wasn't cooking the turkey. Dinner wasn't at our house. Everyone was in good health. Things were looking good. 

I started the day out with a nice 6+ mile run and then jumped right into the kitchen to start cooking. We contributed a few sides, pumpkin pie and some peas for dinner this year. Easy 'peas'y, right? So far, so good. 

The girls and I put together a little cup craft I got on clearance. Leah and I put ours together first, as an example for Kate. 

Then Kate gave it a go. Nailed it. 

Still lookin' good. 

We arrived at the Flaherty's house for dinner along with the Oakes and the Bridges and some friends of the Flaherty's. The table was immaculate and her house was a kid wonderland, even though they don't have kids yet. It was perfect. 

Dinner was divine. Everyone was happy. Thanksgiving was redeeming itself! 

Until Kate lost her cookies. Well, I'm not exactly sure what she lost because she actually refused to eat any dinner. But luckily, whatever it was she lost, she did it in the kitchen on the tile. When she finished, she perked right up and went to play. No fever, nothing. I figured something she had had earlier just didn't settle, so we let her play. More than an hour later, I saw that look on her face again. Un-lucky for me and the pretty green rug, she was no longer on the tile. So, we did our best to clean up and got ourselves out of there stat. 

And we cursed Thanksgiving all the way home. 

Kate threw up a total of six times - three more times that night, which made for a nice few loads of laundry complete with sheets, blankets and pajamas - and once more the next morning. And every time she was completely fine before and completely fine after. No fever. No moaning. No runny nose. Nothing. I still have no idea what it could have been other than the curse of Thanksgiving. 

And with all the evening's events, nothing got this girl down. 

Next year must be our year. And next year, I'll actually get to eat my dessert.  

Tuesday, November 26, 2013

Blackhawk Field Trip

I had the opportunity to tag along with Leah on her field trip to the Blackhawk Museum and Nature Reserve today with the kindergarteners at her elementary school. 

Despite it being seriously windy and cold, we enjoyed learning about the history of the Sauk and Meskwaki Indians and the plants and animals indigenous to the area. We went on a nature treasure hunt, trying to find all the interesting items on our lists. We learned all about the Indians that first settled the area and they things they did during all the different seasons. We even got to eat lunch at the nature reserve and watch all the birds eat their lunches too! 

I always love seeing Leah with her classmates - they are friends with her and include her because of the ways she is just like them, not because they pity the ways she isn't. She has won their hearts and they have won mine! 

They all wanted to be her bus buddy, but secretly I'm glad she chose me! 

Monday, November 25, 2013


I was asked by my friend Colleen to be a guest blogger on her site Adventures in Rettland today. I'm so blessed to know Colleen and her family and call them friends. They have taught me so much about this journey we have found ourselves on and I will forever be grateful for her. 

If you'd like to read my post on gratitude, check it out here

Gratitude is a funny thing. It’s ever so easy to say we are grateful for any number of things. It’s especially easy to say we are grateful for that laundry list when those things are in abundance or are working just as we had planned. However, at least in my own experience, we often don’t feel that same intensity of gratitude for whatever it is we were “grateful” for until those things are left hanging in the balance.

I never knew how grateful I was for a strong, supportive family until I moved away for college. Or how grateful I was for a network of friends until one day, they were gone. I never knew how grateful I was for strong, hard abs until I had a c-section and those abs were ripped apart. For shelter and a fridge brimming with food until I had to start paying for said shelter and food myself. The list goes on for me, as I’m sure it does for you. Some items are big, some are small. Some we are aware of now, and some will be added to the list once they are taken away or not working as we had hoped.
But one of the items at the top of my list is my body.

I’m a religious person. I believe my body was created by a loving, compassionate God. And other than my twice disconnected abs, I have a body that works rather flawlessly. This isn’t to say my body is perfect in its proportions or physical worldly beauty – I’ve had my share of crying sessions over my freshman 15 and acne on picture day.

But, cellulite and cankles aside, I have an incredible, working, healthy body.

When I was a young girl, my legs carried me effortlessly across the hopscotch outline painted on the pavement. My hips shimmied their way to the preschool hula hoop championship. My blistered hands swung me across the metal monkey bars with ease.

As I grew, my skin stayed mostly clear of the dreaded teenage acne – and when it didn’t, my body eventually healed itself of those blemishes. My body has participated in countless basketball, softball and volleyball games. My legs have carried me through tumbles in gymnastics and pliés and relevés in ballet, and later hundreds upon hundreds of miles leading to a handful of half and full marathons.
My fingers have gracefully moved across ebony and ivory keys playing endless scales, Chopin concertos and Scott Joplin rags. My mind carried me through AP classes and a nearly perfect GPA in high school and college, graduating from both with honors. I’ve had no major illnesses, injuries or infirmities. And my body has conceived and carried to term two beautiful, incredible little girls.

I can say, without hesitation, that I don’t say any of this to boast. At this point in my life, I can say these things with complete and utter humility and gratitude for a working body.

The reason I say these things with such intense gratitude is because I have a daughter who can’t.

And yet, despite the fact that her body doesn’t work the way she would like it to, we both still live every day with gratitude. Gratitude for the days her fingers grasp onto the stair railing, for the moments her legs carry her where her brain actually tells them to go. Gratitude for her otherwise good health. For her teachers, family and friends who help her do the things that alone, she can’t.
My husband and I just finished reading the Helen Keller story to my daughter. We both felt that while Keller is a great example to anyone, she is an especially great example to someone with a physical, bodily trial. In the book, she says, “I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do.”

That pretty much sums up my outlook on gratitude. In the same way we shouldn’t refuse to do something that we can do, we also shouldn’t refuse to be grateful for the things we actually have.

We have all been given different blessings. We have all been given different bodies. They all work differently not only in what they can do, but how they do those things. I am grateful, every day, for my body. And, because Leah’s doesn’t work in the same way mine does, I am now also grateful that my body works well enough to take care of her. To lift her, clothe her, feed her, bathe her. To comb her hair, push her on the swings, turn the pages of her favorite books. And if I’m really lucky, I’ll get a slobbery kiss, a bright smile or sweet hand squeeze from her in return.

I never imagined I’d be so grateful for something as small as a hand squeeze. But gratitude is a funny thing that way, and I’m happy to add items to my laundry list.

Friday, November 22, 2013

School picture success

School pictures were a success...the second time around. That seems to be how we roll around here. I didn't think to scan a copy of the first ones (they sent home two) but they were doozies. So glad we opted for re-takes. 

And is it just me, or does Miss Ribbons look about a bazillion years older than last year!? 

Where does the time go?

Wednesday, November 20, 2013

Fall leaves fall

 "Fall, leaves, fall; die, flowers, away;
Lengthen night and shorten day;
Every leaf speaks bliss to me
Fluttering from the autumn tree."
-Emily Bronte 

Thirty leaf bags later, we sure had fun taking care of our mature yard this year. It definitely made for some fun family afternoons and evenings, complete with big smiles from Leah and extreme mood swings from Kate. (So, in other words, just a regular few days that also happened to include raking leaves.)

Tuesday, November 19, 2013

grandma and grandpa layton visit Iowa

Grandma and Grandpa Layton came to visit us in Iowa for a long weekend. I'm pretty sure a few people were over the moon about it. 

Grandpa and Kate gave Ryan a lesson in electrical engineering. 

We took full advantage of Grandpa's height (and non-booted foot) and had him change a light bulb for us. (We have yet to purchase a ladder.) 

And we put them to work in the backyard raking so. many. leaves. I promise it was their idea! 

It wasn't all work, though. We played and played and then played some more. We did lots of Christmas shopping and even fit in a tour of John Deere Harvester Works. And yes, I kept the glasses. I know a good thing when I see it. 

 It was so much fun, we invited them to come back in February!

Wednesday, November 13, 2013

activity day girls

My responsibility at church right now is a co-leader of the "activity day girls" - girls ages 8-11 in the primary program. Twice a month, we get together to work on projects, goals and activities of a wide variety. These girls are hilarious and fun and smart and kind and talented and so full of energy

We had a recognition night for them tonight to present them with charms that correspond with various goals they have been working on. The girls pretty much ran the show and did an amazing job - they did all the musical numbers, prayers, and talks (including one girl who forgot she was giving a talk and gave one on the fly!). Then of course we ended the night with some delicious desserts. 

There are nine girls right now and by next November, enough girls are turning 8 that we will nearly double in size. Wish me luck! I love these girls and feel so blessed to spend time with them a few times each month!

Tuesday, November 12, 2013

how do they do it...updated

I just wanted to post a little update to the series I did a little while ago titled, "How do they DO it?" Kelly was my very first guest poster in the series and she had a lot on her plate! Well, she still has a lot on her plate, but a few things have changed and she posted about it on her blog recently. I thought it was worth an update here for any interested in her story. Enjoy! And congratulations, Kelly!

Lately, (maybe since it is Awareness month and I am talking about Down Syndrome and Rett Syndrome more) I have had quite a few people ask me “How do you do it?”  Which reminded me that back in 2010, I had a friend that was doing a series of blog posts about “How do you do it” – she asked several women in her life to simply complete that sentence. Sounds easy enough right? Here was my response to her a little over three years ago:

{Rett Syndrome} I went through a whirlwind of emotions, never imagining how heart-wrenching it would be to watch our child slowly lose most of the abilities she had learned during her first two years of life. I went through the grieving process over and over. I remember being sad and crying for days following Brooklyn’s diagnosis on May 21, 2005. Also, I was angry. Why was this happening to our sweet little girl? I felt a loss of the dreams I had for Brooklyn since the moment I found out I was pregnant and heard that sweet heartbeat on the ultrasound. Why does she have to suffer? Why can’t my daughter speak, or go for walks, or even talk back to me? I was like a toddler with nothing but “why” questions.

{Down Syndrome} September 12, 2009. Boston entered this crazy world ten weeks early weighing 2 lbs. 3 oz. and fighting for his life. I, again, was asked to be stronger than I ever thought I was capable of being. The first time I held his tiny body in my hands I felt love like I had never felt before….he was a fighter….he was MY fighter. Despite surgery, multiple infections, and other mild complications he was going to be fine! It was not until seven weeks later that there were concerns that something was “just not right.” Genetic testing was completed and Down Syndrome confirmed. Again, my heart was breaking for my child. Why is this happening? Why do MY kids have to struggle in life? He was supposed to be Brooklyn’s protector. What now?

{Divorce} I know the percentage of failed marriages increases within families that have a special needs child. Make that two special needs kiddos and I suppose the number is staggering, but I knew that I would NEVER be one of those statistics! Maybe since my ex also was dealing with his own rare disease it added additional stress as well but the sad truth is, I have now increased the strength of that very statistic I vowed never to become part of. I prefer to not share the gritty details of why it ended. There was unfaithfulness that continued over and over and promises that continued to be broken. In turn, I too was left broken and again asking, “Why?”
When Maren asked the question, “How do you do it?” It made me look at life and the past three years. I have been thinking about this blog post for weeks now and three words continue to come to mind: faith, family, and friends.

{Faith} I have always considered myself to be strong in my faith, but have asked over and over:Why is all of this happening? Why does it have to be me? I would not say that I have ever doubted whether or not God is still there, but I confess that this is the closest I have ever come to wondering. I do believe, though, that without God, this time in my life would have been a much darker place for me. My hope in Him and in His love for me and my kids gets me through.

{Family} I know many people love their family and depend on their support, but I can, without a doubt, say that I would not be the mother I am today without them. My sister Kristin is my best friend. She is my strength when I feel like I can’t be strong anymore. She wipes my tears and holds my hand and even sleeps over and gets up with the kids when all I need is to just sleep through the night. She reminds me that it is ok to cry but helps me remember how to smile too.
My mom and dad moved to town when Brooklyn received her diagnosis and now through the divorce have moved in with me to help financially, emotionally, and physically with the kids. They are a constant support of love and encouragement to me and to Boston and Brooklyn. I am so glad that Grammy and Pappy are able to play a daily part in our lives!

{Friends} I have found that often times my most supportive friends are people that I have never even met! I do not know how moms dealt with special needs (especially rare ones like Rett Syndrome) before the internet! Blogs, facebook, chats, and email have allowed me to connect with other mommies that “get it.” My friends locally love me and want to support and help me and I love them for that! However, they do not deal with Rett Syndrome or Down Syndrome on a daily basis. They do not wonder if their child will ever walk, or talk, or start struggling with seizures. They do not dream of hearing the words “I love you” come from the lips of their children. I do. The mommies I meet online do. Amazing moms who are raising amazing daughters. Daughters that are my inspiration, my motivation, my encouragement to make a difference!————————————————————————————————————————————————————————————————————————————————————
Fast forward three years, as people ask me this question now I think about what has changed in my life. Would I answer this question differently now?

{Faith} I still believe, I still have faith  – I HAVE to, however – I can’t lie – actually attending church almost never happens. It is tough – really tough. BUT, I really NEED to, I need to make it a priority for me – for the kids, absolutely! Prayers are a must around here – to survive. Without God, this crazy life would be MUCH crazier!

{Family} As far as my parents and sister go – nothing has changed here – they are still a DAILY part of our lives. My mom helps out transporting Brookie to and from school everyday and helps me around the house too when the laundry is getting out of control or I haven’t made it to the grocery store :) Dad has become Boston’s “go to” guy when we are running around with appointments for Brookie – they have become the best of buddies! Kristin – well, not only is she still the best aunt in the world, she is also Brooklyn’s third grade teacher this year! Which, ROCKS! Inclusion ROCKS! She also continues to be MY rock – yes – she is my sister but has been my bet friend since birth and continues to be. I could not “do it” – do this life without her.

There has however been an addition to my family since this original post – and that is Jon. The man that God sent straight from heaven just for me and the kiddos! Three years ago as I wrote this I JUST KNEW it would be the kids and I together forever. I will not say alone because with my amazing family alone would never be an option but single - yes. Who in the world would walk into this life voluntarily? Relationships are tough enough but add in two extra special kiddos and I just assumed it would be too much for someone else to see, to love. But that is exactly what happened. If I am being honest here – I think he fell in love with Brooklyn and Boston before he actually fell in love with me (and I am ok with that!) But he did. He entered our world….and stayed. Not only stayed but filled all of our lives with more love and happiness than I ever thought possible! He is my love, my partner in this crazy life – he helps me “do this” life day in and day out… a team.

{Friends} My friends of course remain a stabling force in my life. I still believe that my special needs mamma friends “get me” the most. They are the ones I can call.text.facebook chat.or facetime. at all hours of the day or night and they get why tears can come over the strangest of things. Because they live it right along side me – yes they might be living it in another state – (or country even)  they are living it and we are fighting this battle together – for them – I am forever grateful. They absolutely help me “do it” – and encourage me to “do it” better! I do need to comment on a HUGE addition to this category: Brooke - she is Brooklyn’s 1:1 aide this year in school and I really can’t come up with words of thanks great enough for her and the role she plays in Brooklyn life. She is her voice everyday at school. Like I said before – At school, she is Brooklyn’s feet, hands, and voice. She is her communication partner and friend. She believes in Brooklyn – in her intelligence, her ability to make friends and be a good friend and for that, there are not enough words of thanks.

So, back to the original question – “How do you do it?” Honestly “I” don’t. If it were just me there would be no way I could. I would be failing miserably! They say it “takes a village to raise a child” and I could not agree more – thank you to each and everyone of you that are a part of my “village” – I could not do it without you!

short documentary

When I lived in California, I had the opportunity to spend time each week with the youth in my church congregation. Specifically, I taught the 12-13 year old girls. When I first started, one of the girls I taught was the lovely Hannah.

At the risk of feeling outrageously old, Hannah is now a freshman in college and approached me (virtually) a few weeks ago about doing a short documentary on Rett syndrome! Of course we would have loved if she could have flown to Iowa to do it about Leah, but that wasn't in either of our budgets! I got her in contact with a family that lives near where she goes to school and this film, Silent Angel, is the beautiful result.

Thank you to the Heimburger family for opening your home and your lives and sharing a little bit of your and Lucy's day with us. And thank you, Hannah, for choosing to film a short about Rett syndrome and doing such a wonderful job! You've got a great future ahead of you.

Saturday, November 2, 2013

Natural History study, Chicago style

We move a lot. It's true. And yet, every time we move, things just seem to fall into place. When we moved to California, we didn't realize we were moving to the perfect place for Leah to be diagnosed and begin her treatment for Rett syndrome. But with Katie's clinic and some fabulous families, that is exactly what happened. 

When we drove 3,000 miles across the country to New Hampshire, we had no idea our new neurologist would have a background dealing with Rett syndrome and would be the perfect fit for figuring out Leah and her seizures. But he did, and he was. 

And then, when we moved halfway back across the country to Iowa, we didn't realize we would again be within easy driving distance of Chicago and one of five locations for the Natural History Study for Rett syndrome we have been participating in since 2010 (two of the others being Boston and Oakland) . Okay, maybe we did know that this time. But it is still uncanny how things work out.

So, this morning, we headed a few hours east to Chicago. After a quick pit stop at IKEA, we found ourselves at Rush University mingling with our new Chicago Rett family. Some we knew already, some we know from connections online and some were brand new to us. But they are all family  nonetheless. 

It was a long day. We were in and out of appointments from noon until 5pm. But it was so great to catch up with friends and doctors. Get our questions answered and get some umph to carry on for the next six months. Kate even participated in a sibling study and got some blood drawn for her big sister. 

After the study, we were able to enjoy some dinner with two other families and I somehow didn't get a picture. That shocks even me!

I have to admit, it is also very humbling to be in a room full of girls and women with Rett syndrome who are at varying abilities. We are very grateful for Leah's health and mobility, her pleasant demeanor and her overall patience with us. She is part of an incredible group of girls that we are more than proud to know. 
 Angie, mom to Ellie, who I first met in Boston at my first conference 2.5 years ago.
 The incredible Jennifer, mom to Jilly, who I met in Boston at the conference and got to know in New England.
 The lovely Kate and Dr. Kaufmann from Children's Hospital Boston.

Sweet, sad, Katers. The things you'll do for a sister.