"I should not talk so much about myself if there were any body else whom I knew as well."
-Henry David Thoreau

Wednesday, June 21, 2017


I'm not sure Eleanor is going to win any awards from swim lessons this summer.  Perfect attendance, maybe.  It's not quite the idyllic memory maker that I had dreamed up in my head. We're making memories, that's for sure, but they include how cute she is in her Minnie Mouse swim suit and how she HAS to stop and sit on the bench on our way into the aquatic center. 
The memories include her perky little pony tail that keeps her bangs out of her eyes (you know, for when she refuses to put her face in the water to blow bubbles). 
 The memories include excitement over her very first lollipop. 
 Memories?  Yep, we're making them.  I'll remember how she's very loud and clear about how uninterested she is in doing anything on demand.  These girls (and I say girls because they can't be more than 18 years old) that are leading the class are timid & unclear and we aren't really getting much done.  They say, "Okay, now we're going to blow bubbles" and then they walk around the circle for the next 10 minutes as parents blow bubbles in the water and kids alternate between crying or staring blankly.  When they get to Eleanor and ask, "Can I see you blow bubbles in the water?" she screams, "NO!!!" and swats them away.  Those gals don't know what to do.  Gonna work with my toddler?  You'll need to be tougher than that.  Today, after yelling "NO!" and refusing to blow bubbles, the girl told her she could have a pool noodle if she blew bubbles.  Eleanor actually held her arms out for her and the girl didn't know what to do.  She reluctantly took her, but she missed the opportunity to teach Eleanor something in the process.  They're young.  I get that, but I think that next year I will do more research and get her in to a different place.  I hear great things from a friend whose little one is taking lessons at the Jones Center, so maybe we'll look in to that.  Two year olds in that class are learning how to come back up for air when they go under water.  They are learning to hold on to the side of the pool and how to climb out on their own.  We're blowing bubbles and  chasing pool noodles. 
I'm reminded of when Alex (and eventually Emma) first started physical therapy.  The therapists were asking them to do things that weren't easy or comfortable for them and there was resistance.  While part of my momma heart wanted a therapist that was gentle and comforting, the biggest part of me wanted them to have a therapist that was firm, encouraging, and willing to push them just far enough to reach their own potential.  Love on them.  Yes, please.  Love on them, but be firm and effective.  Cheryl.  I wanted Cheryl.  She wasn't (and still isn't!) a softie that was agreeable to doing the bare minimum and letting kiddos get away with not even trying.  Hey Cheryl, if you ever tire of pediatric physical therapy, please come be Eleanor's swim instructor!
Though this class isn't all I hoped it would be, I don't think it's a total waste.  I mean, she really did enjoy the sucker they gave her after today's class :-)
 Other stuff... my garden is growing like crazy.  I discovered cucumber beetles a couple of weeks ago and I'm afraid they have already done too much damage to the cucumber plant.  My understanding is that their real damage comes from bacteria that they introduce to the plant that results in this...
I discovered squash bugs (nasty, mean looking things) this past weekend, so I acted quickly and decided to use Sevin.  Hey, I'm all in favor of less pesticides and chemicals in/on our food, but my tiny little garden has helped me understand how super difficult that is.  I think I've knocked the squash bugs for now, the plants are growing like crazy, and I picked my first zucchini today! 

The tomato plants are doing fairly well.  I have some small fruit growing, but nothing ripe just yet.  (I had to buy tomatoes at the store on Monday and it hurt to give them money for something I know I'll have an abundance of very soon.)  They aren't growing quite a big as they were by this time last year, but I rotated beds this year and they are in the bed that doesn't get quite as much sun.  They are still growing and I think that the shade will help them last longer as the summer heat really takes hold. 

 Weight Watchers.  Apparently you have to do more than pay the membership fee if you want to lose weight.  Rip off, right?  I should have read the fine print.  Ha!  Yeah, I only stuck with it for a week or two and then we sunk back to our old habits.  We're all just doing the best that we can and right now my best is falling off the Weight Watchers wagon.  Know what I've learned from Eleanor's swim lessons?  My daughter doesn't care that I'm not the skinniest or most muscled momma in the pool.  She cares that I'm in the pool.  I'm in the pool, y'all, and that much makes me happy. 

Monday, June 19, 2017

Crushed It

When Eleanor & I were gone last week, Drew & John worked on our new back yard deck.  Eleanor & I came home to this! 
 On Friday Eleanor got a surprise package from Big Pam with these super fun popsicle holders.  Now she wants popsicles ALL THE TIME.  Are we outside?  Why aren't we eating a popsicle? 
 It didn't take much convincing to get Drew to take an afternoon popsicle break. 
 No matter the mood or the weather... this girl wants to be swinging. 
 Whew, it was hot last week.  Impromptu kiddie pool play with her clothes on. 
 Remember Kyle & Misty's leaky pipe the weekend they kept Eleanor for us?  Well it ruined the hardwood floors and it's all finally getting replaced this week.  Whose idea was it to remove the old floors?  (cough, cough, Kyle) 
 Yesterday was Father's Day and we had a nice, relaxing, rainy day at home.  When the rain stopped, we enjoyed a lovely evening on the back deck.  I'm not done decorating and arranging yet, but we sure are enjoying the extra space. 
 John came over to enjoy the fruits of his labor (hot dogs on the deck) for Father's Day. 

Pool noodle sword fight with daddy. 
 Today was our first day of parent/tot swim lessons at the Rogers Aquatics Center.  My intention in signing up for these lessons was to hopefully teach her skills to keep herself safe in the water and to learn some respect for the pool (since she's so comfortable at Kyle & Misty's and that's not always a good thing).
Eleanor was pumped up and loudly impatient about getting in the water.  Quietly wait your turn?  Yeah, Eleanor didn't get that memo.  We're working on it. 
Guess what?  We are spoiled by Aunt Misty & Uncle Kyle's heated pool.  The aquatic center pools were freezing and Eleanor wasn't pleased.  Really, though, this may be the coolest day of the summer so far.  It was barely 70 degrees outside and it rained quite a bit yesterday, so the water was quite cold.  Know what else?  In Aunt Misty's pool there are grown ups and big kids that gently push you around in a float and cater to your every whim.  In the toddler swimming class there are 10 other toddlers with varying degrees of pool savvy.  When we first entered the water Eleanor was 100% unwilling to do anything.  She clung to me like a baby monkey and screamed "No!" at every suggestion by the teachers.  Good thing they sent out a pre-lesson email to warn parents that this is expected and not to give up easily.  It took a little while, but she adjusted and by the end of our 30 minute session she had loosened up a bit and even agreed to give the swim instructor a fist bump.  Nothing she did today was anything new.  Yes, she gets to hang out in a baby float at Misty's, but she also gets held to practice kicking & splashing & blowing bubbles.  None of that was new, but the new part was having to do it in a "structured" situation with other little ones who also weren't so sure.  If nothing else, it's worth the 2 weeks & $70 just for that.  She'll get more comfortable in a new environment and with other kiddos and, fingers crossed, she'll start learning the basics and be swimming like a fish at a young age.
She squealed "Bye water!" when we went into the locker room to dry off.  She cried like I was torturing her as I peeled off her wet suit & put on a dry diaper and dress.  She freaked out when a lady in the locker room turned on the loud hand dryer.  Then she busted out the front gates and danced around with joy like she had totally crushed that swim lesson.
 We'll see how excited she is tomorrow morning when we go back.  Since it's so nice out, we went for a walk down to the playground when we got home.  This girl loves to swing and it's never long enough. 
One more thing, and it's a big one.  Two years ago I got an email from my contact at the NBIA organization.  NBIA is Neurodegeneration with Brain Iron Accumulation.  It's the broad term for what Alex & Emma had.  Their specific form of NBIA was PKAN (Pantothenate Kinase Associated Neurodegeneration).  We signed forms and provided all information & medical records from the girls' lives to this organization for the sake of research for a cure.  When Emma died (more than 5 years ago) we donated her brain to this organization for research.  We got an initial report a few months later, just letting us know that they did find iron accumulations in her brain and her diagnosis was fitting with PKAN (which we knew, but it was good to know they were studying it further) and that they would continue to use her brain for future research.
 This is the email I received from their organization in the spring of 2015:

... I want to personally thank you and your husband and
> let you know more about the research that has been possible only through
> your extraordinary donation. Your family¹s courage and commitment enabled
> us to make strides in our understanding of how the brain is damaged in
> PKAN. We now know that the tiniest blood vessels that carry essential
> nutrients and oxygen are progressively damaged, leading to a slow
> starvation of certain nerve cells in the central part of the brain. This
> breakthrough gives us a window into how brain cells die in PKAN and how we
> might circumvent this nutrient starvation to effect a therapy.
> Our research program spans from the laboratory to the clinic, always with
> an eye to improving the lives of children and families affected by PKAN.
> We come to work everyday to cure PKAN; that is our singular goal. We are
> interested in science, but we are intent on curing this disease. Your
> family is helping.
> I wanted your family to know that Emma is teaching us important lessons
> about PKAN. She is leading us to answers that will help families, and she
> will teach us long into the future. Thank you for your wisdom and courage
> in making this work possible. The whole PKAN community is grateful.

I'm telling you all of this for a really BIG AWESOME reason.  Last week the NBIA Cure organization made a huge announcement that could be life changing for current and future PKAN families.  Y'all... this could be HUGE.  It's not a done deal and there's much left to be done, but they've made huge strides and there's a very real possibility that they have found a new compound that erases all signs of disease in brains with PKAN.   I don't know that her brain led them to this specific discovery, but  at the very least we know that they learned from her and that she was part of the process to get to this point. You guys.  I cried and cried when I read this.  It's too late for my girls, but it's not too late for many others.  I'm praying for this discovery and the scientists & doctors involved.  I'm praying for the continuing process in the laboratory, with the FDA, for ample funding, and for the children & families that are hoping it all comes in time.  Read the article HERE and please pray with us. 

Friday, June 16, 2017

Mommy & Eleanor: Part 2

Like I said, it was SO hot in Hardesty.  So hot.  I've been to see Casey & Sasha three times since they moved out there 2+ years ago, but that was in January, April, and November.  I was not prepared for how hot June would be.  How can I even describe to you how hot it was?  (It's a dry heat?  Oh really?  Well guess what?  Dry heat is HOT.  Don't try to tell me it's not.) 
I'm so spoiled (surprise, surprise) and was extra happy to see that Casey & Sasha had put the window A/C unit in the living room a couple days before I arrived.  They are SO MUCH TOUGHER than I ever will be.  They're all like, "Oh, it's 95 degrees, but there's a breeze.  We'll just open a window and turn on a fan."  I'm all like, "Dear Lord, I think I'm dying!  Is my skin melting off?  Really, is it melting?  Where is the thermostat?  I need more ice in my drink!" 
I'm obviously being dramatic here, but it really was hot.  The A/C did a great job of keeping the house comfortable and Casey & Sasha humored me by not making me do any manual labor.  Secretly, they may have been happy for me & Eleanor to serve as an excuse to stay inside during the heat of the day.  Maybe. 
I asked Eleanor if she wanted to go outside that evening to see the animals.  She said, "Elephant?!" and used her arm as a trunk while making an elephant noise.  I've obviously failed her.  She thinks elephants live on farms in the Oklahoma panhandle.  Despite the fact that there were no actual elephants on Uncle Casey's farm, she had such fun seeing the horses, calves, sheep, goats, and dogs.  Much to my not-so-cat-loving personality, she LOVED the kittens.  Like, she was smitten over the kittens.  For real.  I had outside cats when I was little, but we never had inside cats because my mom was allergic.  I just never became a cat person and would surely classify myself as a dog person.  Still, even I had to admit that these kittens were cute. 
She put an awful lot of effort into riding this bike (that I never could convince her was actually a scooter to stand on).

For the most part we stayed inside on Tuesday because of the heat (and probably also because I'm a sissy).  We watched movies with Tessa & Payson.  Correction: we watched one movie with Tessa & Payson.  Sing.  Have y'all seen it?  It's pretty cute and I didn't mind watching it on repeat.  In fact, I'd watch it again if they wanted me to. 
Wednesday we made a trip to town. 
Back home... Eleanor fell asleep on Sasha, so they stayed in the A/C for a nap.  It turned out to be little more than 30 minutes, but a little bit is better than nothing and Aunt Sasha got some of those coveted baby snuggles. 
I blew up this little pool that Mom sent.  (please give me credit here.  I actually blew this thing up with my own hot air.)  Because Sasha was snuggling my sleeping baby and I didn't know where to find the kids' swim suits... I slathered them in sunscreen and let them play in their undies.  Crazy Aunt Mandy for the win. 
When the kids decided they were done, Sparkles the dog went for a dip.
Road trips, little-to-no naps, staying up late, waking up early, and playing hard with your cousins can really take a toll on a gal.  
Toddler emotions (and the Mommy emotions that follow) were running a little wild there for a while.  When Eleanor was a baby I apparently gave off this, "My baby is perfect, my house is spotless, and I have everything under control" vibe that made Casey & Sasha feel a bit less than perfect.  Now that I have a toddler with all the normal toddler attitudes and I have all the normal (and less than perfect) reactions to said attitudes, they are feeling way better about their own skills.  I was happy to help :) 
Exploring Wednesday evening.  
 She found a kitten!  In this picture she's saying, "Where go?"  because she could only find one kitten. 
 She kept saying, "Hold him?" so finally I picked one up and let her hold it.  She was bursting with excitement over it.  This black & white kitty was pretty gentle and happy to have her attention.  She was so tickled over getting to hold a kitten and was really quite gentle. 
 I sent Drew a picture of her with the kittens and his response was something along the lines of, "Why do they have cats?  We are not getting a cat."  I threatened Sasha's life if she even considers giving my child a living creature for her birthday.  No cats.  Please. 
The sheep were loud, Eleanor kept telling them, "Shh!"  

  Wednesday wasn't quite as hot as Tuesday, but it was still hot.  Her little face was so read and she wasn't happy when I made her go inside to cool down and have something to drink. 
 In the barn with Casey, working on taming this rocking horse.  (This was Alex's rocking horse that we passed down to Tessa & Payson, so it was fun for me to see her enjoying something that Alex & Emma could never safely enjoy because of their balance issues.)  I thought about bringing it home with me and then decided there was really no better place for it than right there. 
 Tessa is the official animal namer.  The kittens are named Meowers and Cowers.  I don't know which is which, but she certainly does! 

Eleanor continues to be a bit skeptical of Uncle Casey.  She wants him around, but doesn't want him to get too close.  They eventually made buddies with the help of a toy guitar and Casey's creative lyrics. 

 Enjoying the A/C and reading the book Granny B sent for Payson. 
 I wasn't sure how the trip home would go, given that we were driving the entire 7 hours in one day, but she did fantastic. We made a few stops when we needed to, but she looked at books, watched Elmo on the DVD player, and we sang to Beauty & the Beast.  She didn't lose her cool when she'd ask, "Hold you?" and I had to explain (again) that we have to sit in our car seats when we're driving.  She even took a 50 minute car nap, which is a big deal for her!  We had such a wonderful time together.  I definitely would like some time at home now, but I'm so glad to know that fun filled road trips with my little girl are possible!  Mommy & Eleanor Road Trip 1.0 was a success! 

Mommy & Eleanor: Part 1

For months I've been trying to pump myself up enough to take a road trip with Eleanor.  She's not been the best car rider in the past, so that had scared me into delaying such an adventure.  Some of my fondest memories with Alex & Emma were the road trips we took together... just us girls.  We drove to Fort Hood, TX and Fort Sill, OK multiple times to see Drew during his lengthy deployment.  I especially love our grand adventure to Arizona to see Casey when he was working on the Babbitt Ranch just south of the Grand Canyon.  I know Eleanor is little, but I was really craving such an adventure with her and finally got the nerve to make it happen.  I'm so glad I did. 
My grandma B suffered from a detached retina in her right eye several months ago and has had several surgeries and lots of not-so-fun recovery going on.  She still has no sight in that right eye, but she's feeling better and I really wanted to go see her... so that was the first stop on our girl trip.  We packed up and headed out Monday morning.  All smiles to start:
 The trip to OKC takes about 3 1/2 hours from my house, so we broke it up and stopped in Chouteau at the Amish bakery.  We stretched our legs, had a potty/diaper changing break, and bought an unnecessary amount of baked goods.  Eleanor did so great and we made it to OKC in little more than 4 hours.  Eleanor never slept, so we were running on no nap, but she did so good and I was so proud of her.  She was happy to see Granny Browers and we spent the afternoon & evening visiting with Granny, Aunt Linda, and cousin Elizabeth.   I waited until too late to try and take any good photos (once E was overly sleepy, the moment for cooperation had passed), but I have these snap shots of her playing. 
Linda found a bag of kid toys for E to play with. 
 She liked Granny's eye patch, especially when Granny would be silly and say "Rrrrr" like a pirate!  She spent lots of time "helping" Granny to organize her table of things. 
 Elizabeth was the flower girl in my wedding.  Now she's in college and entertaining my toddler.  Ah, time.
 Eleanor showed Granny a few new tricks on her iPhone.  Ha! 
 The next morning we had breakfast with Granny and then packed up for the next leg of our Mommy & Eleanor adventure.  Can you see the look on her face in the background?  "Really, Mom?  More car time?" 
 We made a quick stop at the outlet mall in OKC before hitting the open road.  Eleanor wasn't necessarily thrilled over the time in the car seat, but she never had a real meltdown and was such a trooper.  She took a 30 minute nap and then popped her head up and started talking like she hadn't dozed off at all!  A 30 minute nap is not a great nap, but it's better than the 0 minute nap she took the day before.  In case you're wondering... highways in the Oklahoma panhandle still look like this. 
We stopped at Walmart in Woodward (because there's not much of anything between there and Casey's house in Hardesty), picked up a few things I had forgotten to pack, and I let Eleanor walk all over the store to burn some energy.  The last 1 1/2 of the trip went really well and we listened to the Beauty & the Beast soundtrack on repeat.  Eleanor would squeal, "Princess Belle!" and we sang along.  She did fantastic and I was so proud of how she handled the trip.  It was only 4 trillion degrees with a slight panhandle breeze at Casey & Sasha's.  Translation: it was 102 degrees and approximately this windy:
Quick!  Somebody tie a rock to her leg so she doesn't blow away!