34 weeks + a few

Time seems to be rolling right along. No real updates other than a gem I heard while walking through the grocery store two days ago. 

Said one teenager to another, while looking straight at me, "And that's just ONE reason I will never get pregnant."

Hmmm...Not sure if I should take that personally or not, but I guess I'll give myself a pat on the back for decreasing the teenage pregnancy rate?

Helping Parent

I love, love, love the days I get to be helping parent in Leah's class. Whether we've had a good week or bad, seeing how these kids interact with Leah, and seeing how active and involved she is at school, is a sure fire way to cheer me up. She's actually quite popular, despite her aggressive hand and arm movements {still working on that...}. One girl likes her so much that she's figure out that if she just holds on tight to Leah's hands, she can play with her without getting injured. Smart girl!

Me being helping parent means Leah gets to be helping girl. And let's be honest - she eats that attention right up. Helping girl gets to take the attendance to the office, be the leader in the lines, check the weather and move the marker on the calendar. This is serious business. 

{circle time}

 {busted}

It also means I'm in charge of bringing a snack. Last time I brought homemade banana bread with some fruit and we nearly ran out so many kids wanted seconds. So, we decided to not mess with a good thing. Leah and I baked four loaves of fresh banana bread in the morning before school {don't worry - school starts at noon, so it's not like we woke up at 4am or anything} and almost all four loaves were devoured. 

{Leah's robin, center}

At the end of class, the kids get a chance to run outside {so long as it is above 15 degrees} and play on the playground. I loved seeing Leah's fearlessness on the playground. She needs help walking up the stairs but goes down the slide all by herself. 

On tipsy days, she swings in the blue swing, but today was a good day and she held her body up like a rock star. 

I know preschool is the end of official helping parent days, and this was my very last one, but I hope to be able to volunteer in my children's classes as often as possible for many years to come.

happy easter?

My plans of having a wonderful Easter photo shoot with miss ribbons like we did last year were quickly thrown out the window. Instead, we got the many faces of Leah. That is, the many angry faces of Leah. 

She has a lot.

To her credit, it was after church. She was hungry. And tired. 

But we didn't let it ruin our Easter festivities. We actually had a great day at church celebrating the true Reason we celebrate (to hear one of my favorite excerpts of a talk on Easter, click here). When we got home, we enjoyed some treasures from our baskets {even Billy got one!}, we took naps and enjoyed a feast with friends. 

We might give the photo shoot another try when the sun in shining and we can run around outside. Her twirly dress is impressive enough to give it a second chance.

vibe

A quick trip to Boston with this swell traveler

+ a quick stop here

+ a killer of a deal on this baby from craigs list ($850 new, $250 used in great condition)

= oh so worth it.

The Lorax

Until today, Leah had never been to a movie theater. 

I know. She's five. Every five year old has been to a theater.

But I was just so nervous! I had no idea how she would react to sitting in one place for two hours watching a movie I'm not even sure she likes! I nearly took her to see Tangled probably four separate times, but chickened out on every occasion. 

When a friend asked if we wanted to join her and her two boys to see The Lorax on a sleepy Friday afternoon when both dads were out of town, I thought it might be fun. When she suggested we go to the theater a half hour away, I jumped at the chance. Seriously! If Leah was a train wreck, at least I knew that no one would have any idea who we were and we would never have to go back. 

Win. Win. 

So, after school, we piled into the car and drove 30 minutes south. With some time to spare before the movie started, we practiced our driving skills and ran around the empty lobby.

The five of us were five of nine people in the theater. It seriously could not have been more perfect. Leah sat on a booster incredibly well. She only wanted to get down once. We adjusted her seat and she got right back on. 

My friend spoiled her and got her popcorn, gummy bears and a drink. Leah was a fan. And she only spilled a tiny bit of her drink on me once {which was way better than I anticipated}, so I was a fan too.

The movie was darling. The company was fantastic. And Leah was incredible. 

Leah proves me wrong once again. Another fear overcome.

tuck partners mini golf

The Tuck partners organized a night out at the local mini golf center to work on our handicaps and swing at the batting cages and driving range. And then the partners decided to be nice and invite the students and Tiny Tuckies too. 

After a relatively warm week, the evening turned out to be seriously cold. As in Leah and I both wore two coats and gloves kind of cold. 

But we still braved the winds and played ourselves some mini golf. 

Actually, Ryan played mini golf with Leah {she's good!! - she was this close maybe three times to getting a hole in one!} 

while I did my best to stand there and look chubby. Looks like I succeeded. 

After golfing, Ryan tried out his swing on the driving range while Leah and I thawed ourselves inside and ate pizza and veggies. 

A big thanks to Andrea for recording the evening for us. I did offer her my gloves {and she accepted my offer after awhile}, but I was too much of a wuss to pull my hands out of my pocket to use my own camera.

kindergarten registration

This morning was kindergarten registration for Miss Ribbons.

I know. Kindergarten. 

You'd think it would be no big deal to me as this May marks the beginning of Leah's FOURTH year of school. We're no strangers to Leah being in school in this house. But up until now, it's just been PREschool. Kind of like pretend school, right? Just sort of preparing us for what is to come. 

But September will be Kindergarten. All day kindergarten to boot. 

We got all the logistics in order - proving her birthdate, our residency and her health history {it's a good thing i'm finally figuring out how to organize her FOUR binders bursting at the seams with her medical and educational information}. 

Leah had a blast standing in line with our neighborhood buddy Robby and her preschool friend Ian {the one who thinks she is beautiful}. They had each other cracking up the entire time we waited. She also enjoyed checking out the two classrooms {they haven't made class assignments yet because not all of the teachers have been hired} in which she could possibly be spending her days. In one room she immediately found the resting/reading mat and made herself at home. 

She wore a big girl name tag and got to pick out a book about the alphabet to take home. But really, I don't think she needed it. Everywhere we went, we were greeted with enthusiastic, "HI LEAH!"s. Everyone already knows who she is.

Then they took a bus ride. Registration was actually during her normal school time so I took her back to her classroom before I knew about the bus ride only to find out her para ended up taking her. I took a picture, but I'm actually regretting not hopping on the bus with her now. I heard she really enjoyed it {which is great considering she's going to start riding it in month to prepare!!}

Ryan and I have lots of mixed emotions about Kindergarten. It will obviously be a different experience for us and for Leah than it is for most five year olds and their parents; if I'm going to be completely honest, that just makes one more thing for me to be sad about. We worry kids will make fun of her and about the ability gap that continues to widen as she grows older. But, we know this is a great step. Leah seems legitimately excited about it and I am excited to watch how she will grow and the things she will learn as she makes this leap. 

She is sure to amaze us all. Stay tuned.

Street Sweeper

What is this, you ask?

Why, it's the street sweeper coming to tell New Hampshire that spring is here to stay!!

Good riddance rocks and dirt. Now my Ryan can safely ride his road bike.

control

I've had a number of things on my mind lately. No real answers to any of them, just open ended thoughts, really. 

Last week, another Rett girl passed away. I'm not sure if I ever met her. I may have as she attended the same clinic Leah did in California. But it hit close to home because I know many of our friends were personally acquainted with her and her mom.

She was only 11. She still had a lot of life to live. And the decline was quick. Too quick. 

A Rett friend of ours {a father who hosts this amazing event each year on behalf of his daughter for Katie's Clinic and Rett syndrome research} knew this sweet girl well. She was one of the first girls he met when his own daughter was diagnosed. I look to this father as an inspiration - a constant source of optimism, strength, love, humor and hope. So, when he wrote the following letter, I cried. 

Dear Friends, Retters, and acquaintances,

This is the toughest post I have ever made.

A few days ago the Rett community lost another angel. Many of you will say, “oh not again” or “sad, but what does it have to do with me” or “it will never be a part of our life”. True as these statements may be I am asking you to bear with me and continue to read on. You see Arianna was a very special child. She shared many things with Erika and me. She was one of the first girls we saw in the beginning, her eyes sung like Erika’s, but most of all she laughed and smiled like my girl. Just a short time ago she was so much like Erika that if they were not of a different ethnicity they could be relatives. Arianna and Erika recently spent a Children’s Hospital stay together. I had the wonderful privilege to hold her hand following a tough scoliosis surgery for Arianna. Erika and I visited daily. She had recently left the hospital and was given the go ahead to return to school.

Then 3 days ago she developed a fever and was gone. I spent last night in Erika’s bed last night crying the entire night. I know that it is not manly but with Erika at 60 degrees and the same surgery inevitable, the comparisons are too painful to deal with. I told my dear friend Paige last night that for the first time since we began this life I feel defeated. I know it will pass but it is a change in how I feel. Arianna’s mom gave all she had as a single mom and Children’s performed an amazing surgery. Yet still the damn Rett Monster won again. Seems to me that no matter how hard I try I will not win. So the tears fall again and again all day today. Yet there she was coming through the door in her chair to a bleary eyed father all smiles and giggles with the best wet kiss ever. All I could do was hold her and sob in front of the nurse.

It comes on a day when most of us marvel at the fact that someone will win over $650 million tonight. I am glad for their fortune and the happiness it might bring. Barring a miracle it will not be us with our 1 ticket. I would ask you in Arianna’s name and Erika’s future that each of you look to your community to start your web of influence. Autism is now 1 in every 88 births. You may have dodged the bullet with your children thankfully but can you believe that by the time you have grandchildren you will be so lucky? This epidemic needs to be stopped and the only way is you and us.

Sunday I will be at a mass for Arianna and will have flashes of my future. On Monday I will hug her mother sobbing with no words. I beg you for all those un-born that may be yours and those of us now and forever engaged, look to your community and find us hope. I beg you.

Hug your children tight.

Love you,
Britt and Erika

I cried because I realized that even the strongest of the strong in my tiny Rett circle have no control. We can hope and work and fundraise and pray. But ultimately, the lives of these girls - the life of Leah - is out of any of our hands. And I have to admit, it brought me down a bit this weekend. 

I feel as if I've grieved all over again in just a few short days for the loss of what could have been. For the loss of control over the life of my little Leah. 

At each turn, I was met with a smiley, happy, extremely content Leah. It really was a fantastic weekend. A few seizures, yes, but such contentment, quite a bit of hand and arm control, a completed potty chart {#4 - the longest and fastest yet!}, fantastic eating, stellar tooth brushing and just an overall great attitude. So I wondered, why, when Leah seemed to be so content was I feeling such turmoil, fear, angst and sadness. 

I kept thinking about our family losing a close friend - maybe one of the few girls that we first met when Leah was diagnosed. One of the girls who had such a great impact on us, providing us with strength and hope. 

I thought about how life goes on. That we learn and grow and continue to hope - only to lose the whole reason for that hope. 

I again feared what my life might be like without my sweet Leah. And I just felt defeated. 

I know this feeling will pass. I know this little girl's family and friends will pick up the broken pieces of this past week and continue to fight for and hope for and give love to those who are still in the battle. That, we can control. And I am grateful.

conference weekend

We could not have asked for a more perfect conference weekend. It was filled with friends, food and...actually watching conference! I'd say I watched 90-100% of all four sessions, which has got to be a first. 

Saturday we were watching our friend's little boy. When conference started at noon, both N and Leah climbed onto the couch. As the session started out with a prayer, Ryan and I were having a conversation and N said, "Hey! It's a prayer!" and promptly folded his arms, looking at us with a scowl on his face. He sure called us out on that one! 

Soon after, when President Monson was speaking, little N said, "Look! It's the prophet!" He really thought it was so cool that he was on TV. 

Sunday brought us brunch at a friend's house {where I attempted orange rolls that weren't half bad}, 

cuddling on the couch {this is what Ryan and Leah looked like for most of the 2nd session that day} 

and dinner at the community center with four other families. Cafe Rio style. If it weren't for the bug that has now passed through all five families and made 14 out of the 17 members of those families sick {I'm one of three who has steered clear!!}, I'd say it was a smashing success. 

Here are some of my favorites:

Elder Hallstrom - Converted to the Gospel Through His Church

President Eyring - Mountains to Climb

Elder Holland - The Laborers in the Vineyard

Elder Rasband - Special Lessons