If Something's Not Working, Change It

Oh my gosh, I haven't posted in a really long time! Is Blogger even a valid blog platform anymore? Anyhoo, I thought I'd dust off the old keyboard and finish a post I had started to write way back in December of 2017. Over two years ago!

First I'd like to explain the title of this post. This is courtesy of my wise mama Barb. She has this knack of finding solutions to problems with ease, almost like she has an otherworldly insight into life’s problems. Anytime I bring an issue to her attention, without hesitation she will have an idea. It's always something simple and practical. One of her most common answers? "If something's not working, change it".

I have utilized this advice many times over the years. When Ellie’s therapies were beginning to be too much for us, we opted to take the summers off. Therapy-free summers were renamed "real life therapy", and we have not looked back. We actually see huge gains in Ellie's development during these breaks. When my corporate job was overwhelming, my mom suggested working 4 days instead of 5. I asked my boss, and after some planning and rearranging I was able to have Fridays off. It was one of the best decisions I have ever made for myself! And since I wrote this post, I have quit corporate life and joined Jesse at Stafford Beverage selling booze! What a huge change for me, but a good one. I'm still adjusting to this new role and am finally settling in. Being home at the end of the day to get the kids off the bus has been the biggest bonus with this change. I am so grateful.

The whole point I'm trying to make, is that when you find yourself stuck in a rut, feeling down, and as if things are no longer working, take a step back and make a change. Try talking it out with the ones you love, lean on your mom, mother-in-law, husband, or best friend. Talking it out will help bring out alternative solutions to the surface. And hey, if it doesn't work that is OK too. You can just move on and try something different.

But that brings me to the reason I wrote this post in the first place. Sometimes, something isn’t working right before your eyes and you don’t even realize it. Like the time we found the note in Luke’s backpack. The guilt-inducing, I seriously suck as a mom note. I was sucker-punched, right in my guts.

It was after dinner one cold night in December in 2017. Jesse and I were cleaning out the kid's backpacks, and he happened to flip through one of Luke’s notebooks. Doodles filled the pages, Luke’s signature unicorns, detailed eyeballs and other colorful creative creatures. I like to think of this moment as a little nudge from the universe, because I’m usually the one who empties backpacks. But on this night, Jesse took on the job but he happened to flip through Luke's notebook, something I wouldn't have done. He handed the little notebook to me and nodded as if to say "check this out" with a concerned look on his face.

In Luke’s cute little handwriting was an “attention chart”. He had drawn a pie chart where he carefully outlined how much attention each of our kids receive. Luke: 25%, Will: 35%, Ellie: 50%. That equals 110%, not too shabby, eh? In all seriousness, I felt terrible when I read it. Absolutely terrible.

"Attention Chart"

I immediately called my mom. You see, I grew up with 6 brothers and over 100 foster kids in our home. Why did I not feel deprived for attention as a kid? I needed to know what the heck was I doing wrong, and how to fix it. I was crushed. She reminded me of our “hooky days”. Ahh, yes, hooky days!!! One of my most cherished memories! My mom would let me skip school and we’d spend the day just the two of us doing whatever I wanted. This usually would include trips to the mall to buy cassette singles and acid washed jeans. It was amazing and memorable.

After I got off the phone with my mom I excitedly asked Luke his thoughts “hey would you want to skip school and take a hooky day with me?” He was thrilled. “Heck yes!" He said. "Can Grandma come? Can we go to Walmart and Chipotle?” So that’s what we did. We had a blast, we found some fun things for his art desk. We went to Walmart, and Goodwill. We took our time eating lunch at Chipotle, and didn't rush like usual. We had the best day ever.

Hooky Day 2017

And now it is two years later. Today Luke took his 3rd hooky day since I originally found the attention chart! Each of our kids get one day during the school year to take a day just for themselves and we do whatever they want. I love it just as much as they do. But man! Sometimes life kicks you in the nuts with an attention chart and it requires change to be made. I must say I'm glad we found that chart Luke drew and that we could openly talk about it with him. Today was so fun, can you guess where we went? Walmart and Chipotle, and TJ Maxx as well. We rushed home and Grandma helped get his room all decked out just the way he wanted it. It was the best day ever. :)

New bedding and loving it!

Hooky Day 2019

Oh, and I had another realization through all of this; my mom and I are still taking hooky days together. Every year on the day of our birthdays we go shopping and out to lunch. We always get a cocktail with our lunch and we have a blast together. This year is her big 80th birthday so we are taking a hooky weekend to Utah together. I cannot WAIT!

I wonder if my kids will still want to take hooky days with me when we are older? I sure hope so.

Hooky bday with Mama

Is there something in your life that may not be working? Take a step back and look at your situation. Even the smallest change can make an impact. Think of my mom’s words next time you are stressing out, "if something’s not working, change it”. Try it, you'll see. And you'll laugh at how simple it is. Thanks mama Barb for always having the best advice.

For this week's post I'm choosing a song that reminds me of my kids, because I'm a total sap for mushy love songs. 

Little Hands - Inland Sky

I Missed My Flight and So I Stayed

I haven't posted in a couple of months, time seems to be slipping right through my fingers. This is going to be another pictorial recap of September and October. We have had a whirlwind of a time I tell ya, with the Buddy Walk, a once in a lifetime family vacation to Hawaii, Halloween, Ellie whistling like crazy and her health update! And she's going to be 2 years old in two months!

The boys started school in September, we have a Kindergartener and 2nd grader now. Luke rocked his purple shirt, tie, and purple Nikes. I still remember to this day the way I felt when I started Kindergarten. Horrible butterflies and a sick feeling in my stomach. A feeling I still get to this day when I have to do something new that makes me uncomfortable. Luke on the other hand is nothing like me in that way, he was excited for his first day.

We had Ellie's Buddy Walk, it was amazing. We had a big group of walkers and it was an absolutely beautiful day. I had set a goal to raise $1,000 for the Down Syndrome Network of Oregon. We ended up tripling it and we raised over $3,000! I couldn't believe the outpouring of support from my coworkers, family, friends, even some of my new online friends that I have yet to meet in person. We are so grateful. Thank you to those who donated and joined us in our walk. It means the world to us.

In September I had a little mom's get together at my house to talk about my appointment with our Naturopath Dr. Peirson. Having local moms to talk to in person is so important. The kids all play so well together. We spent most of the time talking about our stories and how we received the Ds diagnosis. There's something I have noticed in many of the stories I hear. I've heard stories about years of fertility struggles and then all of the sudden they were pregnant with their child with Down syndrome. Or they weren't expecting to have anymore children and "surprise!!" there they were! Or the dream thing, one of the local moms I chatted with also had a dream of their child before they were born. There's just a little shred of magic in these kid's conception and I am always left in awe. I wonder what that's all about... hmmm...

Speaking of my mom support, I am planning to meet many of my online rockin' moms in 2015. I'm so excited I can hardly see straight. I'll be going to a conference in June and I'm hoping to go to a retreat in September. I've made so many lifelong friends thanks to Ellie and I'm so grateful.

A couple of fun things that have happened recently, I had another blog posted on The Mighty, I sure love that inspirational site!! It was the one where I wrote about my big bro Danny and Uncle Dave.

The Mighty also made a shout out for parents of children with Down syndrome to share their thoughts about raising a child with Ds and somehow my quote was picked. How cool is that? These 24 People Have Advice For Any Parent Who Just Received a Down Syndrome Diagnosis.

I also entered Ellie in a photo contest for an awesome site called Stand Up For Downs. They use humor and comedy to raise money, awareness, and get people laughing. I can so appreciate their mission. They had a funny picture contest, and we could have won $1,000 to the charity of our choice! I was hoping I could raise funds for our non-profit (the DSDN) and we were SO CLOSE at 5^th place!! The winner totally deserved the #1 spot, you have to see the photo that won it's hilarious. Here’s the picture I submitted, it makes me giggle:

October was also Down Syndrome Awareness Month. I did this little photo of Ellie to celebrate. I actually printed this at Costco to hang in her room. Her face just kills me, she's so darn kissable!

We also went on a trip to Hawaii to celebrate Jesse’s Uncle Jack. He turned 60, and he is by far one of the coolest dudes I know. It was a big group of us, my in-laws, Jesse’s Grammy, along with our family that moved to Vietnam last year. It was soooo relaxing and so wonderful to watch the cousins together again. The boys were so excited for their first time on an airplane. Ellie traveled like a champ and made friends everywhere we went. We drank lots of mai tais and ate really good food thanks to the cooking skills of my sis-in-law Dani. There was lots of swimming, sunning, and giggling. This was a trip we will remember forever.

As we were exploring the island I kept thinking about the people that live there. Everyone seems so relaxed and friendly, it has such a laid-back vibe. I wondered what do they do for a living here? How much does it cost to buy a home? Could we pick up and leave and come live here and never go back? “I WISH!” Jess and I kept saying. When we were sitting in Uncle Jack’s backyard (I mean back sand.. on the ocean, not really a yard)… I told him how I completely get why he lives there. It's paradise! He then told me that 28 years ago, he was 32 years old and living in Oregon. He went to Hawaii to visit, and upon returning home had missed his flight. Oops. “So I stayed” he said. Just like that. He never looked back. He just decided to stay in Hawaii and he’s lived there ever since. See? Dude.

Uncle Jack with his great nieces and nephews in his backyard :)

He’s awesome and it was so great to get to know him in his element since we usually only see Uncle Jack when he's in Oregon visiting. He took the kids for rides in his yellow car, gave lots of noogies, and snuggled Ellie up a ton. Will told me today that Uncle Jack went 90 miles an hour in that yellow car and that they almost hit a wild turkey. I highly doubt it was that fast, but in a 7 year old's mind it's something he will never forget. I’m so grateful we could all go to Hawaii together to celebrate this awesome guy. I took over 1000 photos again, and surely my computer is going to explode from being over capacity at some point. Here are some of my faves:

During our vacation I also ditched all of Ellie’s supplements, her sure steps (braces for her ankles), her hip helpers (to keep her froggy legs aligned). It was awesome (I said that in a singing opera voice in my head)… I gave her thyroid meds every day but that’s it. And you know what? I felt like she was stronger and progressing better than ever after that. Why does that always happen?? She's now back on everything, we are following PT’s rules as far as wearing all of her therapy gear, and we are back to our routine but damn it felt good to be a rebel! And she loved it too.

Halloween started off kind of awkward this year. You see, every Halloween since the boys were tiny we would trick or treat in our little town with the cousins, but that isn't possible now that they live in Vietnam. So last year we realized we needed to find a new tradition, and we went with our best friends and had a blast in a new neighborhood trick or treating. Well they moved to Texas in August, so that tradition ended too. Can you sense the self-pity?? Wah waaaah. I feel like everyone we love is moving away from us, and I don't like it! So I called our OTHER best friends and invited ourselves to hang out with them. I have no shame. Luckily they said it was fine! It was a lot of fun, the kids scored tons of candy, and it was fun to catch up. Jen, you guys better not move away too!

Our boys together

Ellie was Minnie Mouse, Will was a dead skater boy, and Luke was a zombie. I found out how to do the make-up from watching youtube and hounding my friend on facebook who is a zombie face make-up master (thank you Michelle!!!!) It was easy and the boys LOVED it. 

Here’s a quick how-to: You will need liquid latex, which you can buy from the Halloween store or in my case Amazon because I have a sick addiction to buying stuff on there (free shipping in 2 days? Count me in!)… anyhoo, paint on a thin layer of latex, put a piece of tissue paper over it, paint another layer of latex over that and let it dry. Use tweezers and pull the paper and rip it. Then you just paint over it with cheap face paint you can get at the Halloween section of any store. Wah-lah! You have scabby peeling sores on your face! The boys said it was their most favorite costumes ever. And I had fun doing it!

OH, and THIS! This happened:

Brag alert! This is a drawing by my niece Karley, she is 15. I can't tell you how many times Jesse and I, as well as the boys, have studied this dude's face. She drew this with pencil on a piece of copy paper. I still can't believe it, I can't tell you how absolutely proud I am of her. She amazes the hell out of me. She is the most talented artist I know and I can't wait to see what her future holds.

OK, Ellie’s health stuff.  She is now on thyroid medicine. She had 3 teeth come through after being on the meds for 7 days, 2 top molars and one of her front teeth- NO JOKE. Her hair is shinier and growing faster somehow, her tone is better. She now pulls up to stand and goes from the couch to the table with no fear. It took her forever to get to this point but once starting the meds I kid you not, she is a confident little stander-upper now! Everyone noticed the huge change in her, my mama-in-law, my mom, our babysitter, everyone! Walking is still a ways away, but I feel like we are heading in the right direction. I am now giving her the meds two times a day based on her latest blood work. I truly believe this is what she needs and it feels right. Although the Pharmacist at Walgreens made a snide comment "WOW, you have your child on thyroid medicine ALREADY? Isn't she a little young for that?" She's lucky there was a window in between us because I wanted to throat punch her. OK not really. Ok well maybe just a little bit. :)

I have been waiting months for Ellie to say “mama”. One of her first words was "dada" and in the past year I've been trying to get her to say mama, but she will look at me with a twinkle in her eye and say "dada". Then it finally happened, but it wasn't the way I expected. See the below video. And note this was a month ago and she still says it this way. Yep that’s my girl... she's such a stinker. 
Ellie Finally Says Mama

Her other awesome new trick is her whistling. People freak out over it. Her OT said “in all my years working with kids I’ve never had a child able to whistle at 20 months old!” I think it must be genetic. My dad was the best whistler ever, and I whistle every day. And hey it’s good oral motor therapy if you ask me!
See clip:
Ellie Whistling

I also want to bring up our DSDN Holiday Card Campaign. We are making a shout out to families who have children with Down syndrome to send a holiday card to their medical providers (NICU Team, Pediatrician, OB's Office, etc). Please share your beautiful families far and wide as a reminder how loved our little ones are. 

Here are a few more photos from the past couple of months.

Ellie's left eye is turning green and you can really see the difference in this pic. 

Yes, yes you are my girl.

One of my all time favorite pictures of her!

I made this shirt for sis, I think it's so cute on her. We also sent one to Ellie's boyfriend Mason, how adorable is he??

Every once in a while I will have a shirt idea and have found Spreadshirt to be really great in regards to quality, ease of designing, and quick shipping too. This is also where I made the boy's shirts for our first World Down Syndrome Day. Luke wears Will's old one now and it's getting too small. I think I'll reorder some bigger sizes soon because they love to wear their "sissy shirts".

Here's my little shop with the different shirts I've come up with: Spreadshirt Shop I highly recommend them if you have an idea for a shirt!!

I love this photo, look at how small my babies are! Oh my heart!

Well that wraps it up for now. We are looking forward to hosting Thanksgiving at our house again, and then Christmas is right around the corner and Ellie's birthday too. Can someone slow down the clock a little please? I can't believe it's the middle of November already. Sheesh!

I always end each post with a song that is special to me. As I've said before, I always have a constant soundtrack playing in my head. For this post I asked Uncle Jack to choose the song. He is a music buff and has impeccable taste, so I knew he would come up with something perfect. Thank you Uncle Jack, I think this is a wonderful choice. I especially like this part:

So if you're walking down the street sometime
And spot some hollow ancient eyes
Please don't just pass 'em by and stare
As if you didn't care, say, "Hello in there, hello"

Hello In There - John Prine