Monday, September 17, 2018

Meet Goldie 2.0

Goldie 2.0

Oh you don’t remember Goldie 1.0? You shouldn’t because she literally only lived half a day. 

I’ll back up. 

Nora has been relentlessly asking for a cat for damn near a year. You know we aren’t giving into that. However, she is clearly smart enough to adjust her request for a “simple” fish. We figured it would be easy and not too costly. Hm. 

Saturday we went to Petsmart. I asked questions and didn’t quite realize there was a bit of process to get your water conditioned and acclimate the fish from the store water to your tap water. Ergh. I’d prepped everything based on what I was told, even a follow-up call I made to Petsmart to make sure I was clear. 

Well, by the time Nora went to bed, Goldie 1.0 wasn’t looking too well. When Tim and I went to bed around 10:30, Goldie was a Floatie. Whoops. Poor Nora woke up at like 5:50am on Sunday to tell me she thought Goldie was dead. She was just a touch sad, seemed bummed only in a general sense. 

We took the fish back - because thank God they have a 14-day turnaround - and we got a new one free of charge. This new associate told me we had to ADD our tap water little by little to the fish bag to help it acclimate to our water. No one told me that the day before. 

So I was more cautious with Goldie 2.0. However, I also realized I didn’t look at the water conditioning cap dosages close enough. I basically put 5X too much conditioner in the water so poor Goldie 1.0 was probably shocked to death. πŸ˜–

I added clean water for Goldie 2.0 and she made it through the night and ate her breakfast right up - so I’m praying to the fish Gods to be gentler on Goldie 2.0. 

If she doesn’t last, I give up the fish baton to Tim and he said he’s moving to a Beta Fish because those are heartier. 

The End.

Potty Progress (?)

Tim ran out to get some items yesterday. Hannah said she had to go potty but pushed me out of the bathroom and closed the door. 😳

I’d heard she’d started this behavior last week when I was gone. I was nervous that she’d pee all over the floor or just go to town playing with toilet paper. 

I kept checking in with her and she’d growl back “No!” At one point she let me in and she was stark naked! AND there was poop in the toilet! Sooo... good? But then I started freaking out that I had to check if she’d wiped. 

She hadn’t. I flew around getting wet wipes before she sat down on a chair! Thank God I was speedy before THAT mess happened - !! 

But then the turd (har) refused to put on clothes for a good 20 minutes! I laid a kitchen towel below her chair just in case. πŸ™€

Regardless, I’m proud Hannah is gaining some autonomy with her potty skills!

Not Fall Yet

Sunday Nora wanted to “go somewhere” - she asks this every weekend. Our local farm, Shaw Farms, had just kicked off their Fall Festival, so even though it was knocking on 80˚ outside, we went in the morning. Not too hot, but definitely not fall weather. We’ll go back in October to actually enjoy some apple cider and hot chocolate. 

Hannah has been toting her little pumpkin around the house : ) 

Final Kitchen

I was in Denver for my annual work trip while the final grout went in - but I came home to our beautiful grown up kitchen! 😍



Teaching Children About Disabilities

I’m behind the ball on this - I wanted to post closer to when school started. But it’s never too late to teach your kids about disabilities and differences. 

I’ve found countless articles and posts online and on social media from other families that help navigate these conversations. I’m happy to answer questions and provide guidance!

One common point: It’s not enough to just “be nice.” Especially when young minds haven’t encountered differences before and have questions about wheelchairs, limb differences, atypical movements or sounds, leg braces, walkers, etc. Education is key to our children treating their disabled peers with dignity, kindness, and inclusion. 

- proximity is needed
- ask him/her to participate
- ask him/her to join the game
- be an includer
- be an inviter

It’s a basic human need to want to feel loved and included. 
Parents: Are you modeling this with your children? Who are YOU inviting into your circle?

The amazing advocate, Miggy, has some great guidelines to teach your children about disability

  1. Everyone is different
  2. Questions are okay, as long as they’re kind
  3. Find common ground
  4. People with disabilities are differently-abled
  5. Encourage your child to build a genuine friendship with someone differently-abled

This writer has cerebral palsy and gave these summarized tips:

  1. Explain that people with disabilities are like everyone else, but they might do things differently, in their own unique ways.
  2. Try to make it easier for children to understand by explaining the challenges people with disabilities may face in a way everyone can relate to. Just as someone needs to wear glasses to help them see, someone with a disability needs a walker to help them walk.
  3. Encourage children to include kids with disabilities in their activities.
  4. Explain that disabilities are not contagious.

Earlier this year I was in the swim class changing room with another Mom and daughter across the benches from us. The little girl said “Hi Hannah!” and gave Hannah a wave. The girl told her Mom Hannah was in class with her. I felt my throat closing up out of gratitude and happiness; a peer saw Hannah as equal - she had no preconceived thoughts. I can only hope that her family keeps her pointed down a path of acceptance.

Friday, September 7, 2018

Literally No Rest for the Weary

We purposely kept Labor Day weekend quiet because things are not settling until mid-October at this point. 

This week has been a straight cluster. 

My Tuesday started horribly. I was tired from being up with Hannah. I was almost at work, at a stop sign in an alley. Woman in front of me was geared to take a right-hand turn. I looked left to see if any traffic was coming and pushed on the gas, assuming the woman had made her turn - she did not. I hit into her trail hitch and jacked up my passenger front fender. Still drivable, but definitely damaged my car and my mood. 

I had to leave early to get Hannah to her 4-year checkup. 2pm is an awkward time. Right before I left work I realized “Oh crud, she has vaccines!” Three to be exact. It was a little easier than Nora’s because Hannah cognitively didn’t quite understand what the tray of syringes next to her were about to cause her to lose her mind. Which she did - but Hannah gets over it fast. 

Wednesday Tim took Hannah to the follow-up appointment for the follow-up sleep study to her tonsillectomy and adenoidectomy. The bad news I feared came true: absolutely nothing changed. Her breathing is still shallow and stops breathing periodically. Our next step is an MRI/endoscopy to see if there is physical blockage in part of her anatomy (and possible future surgery). In December we will have a third sleep study to determine precisely what she’ll need for a CPAP machine. Yes, young children have CPAPs - a handful of Hannah’s peers already do. 

So ultimately, I felt crushed and defeated. I felt like by age four we could put all the physical challenges behind us. A new diagnosis was a blow. I went to the downstairs bathroom and cried out my frustration. 

Thankfully I have another friend whose son is Hannah’s age - and at the same school - who is going through the exact same thing. We’re both pissed that an MRI and endoscopy aren’t the first path for sleep apnea - we wasted time, money, energy, and a near two weeks of recovery - all for naught. 

Ultimately I know this will be for Hannah’s benefit and ours - better sleep for all. A CPAP isn’t for certain either - I imagine if some physical barrier is found, there could be a future surgery and bypass the CPAP? I just hate both ideas. 

Thursday there was a shooting close to where I used to work downtown Cincinnati. I believe there is a gun problem in this nation. I’m utterly sick of no action from the people who run this country. 

I’m also flying out Sunday morning for my annual work “inspiration” trip to Denver. I don’t feel guilty leaving my family, but I feel incredibly bad leaving Tim with a horrible sleeper. He will have no help tending to Hannah who is guaranteed to get up at least once in the middle of the night and then again sometime between 4:30am - 5:30am. He’s going to be a zombie and for that I feel terrible. 

Hannah with Ruby, another cutie at the babysitter’s.

Hannah is Four!

This year was very quiet - no big party - we had planned on participating in the Buddy Walk tomorrow, but the forecast is veering towards rain. Our group has shrunk every year, so we’re calling it. 

We got donuts in celebration of Hannah, but of course, she didn’t eat any. We did spend the morning at the Sharonville pool - it was Labor Day weekend and surprisingly not crowded. Had lunch at the Krons. 

Quiet 4th birthday. We plan on making a bigger deal next year for her 5th with friends and/or family!

Thursday, August 30, 2018

Knock on Porcelain

Sooo I probably shouldn’t even type this because I’ll jinx it... but Hannah has been dry for perhaps three weeks now with no accidents - ! Dry diapers in the AM!

We are pretty regular about putting her on the potty as soon as she wakes up and right before bed. 

But I’m not calling her “trained” by any means... Because pee happens. 

Wednesday, August 29, 2018

Hope Story

A fairly well-known family on social media, the Smiths, are big Ds advocates. Noah’s Dad, Rick and Abbey Smith have helped start Hope Story:

Hope Story is a team of medical professionals and storytellers. We believe that stories have the ability to provide hope to others and change the world. At our core, we exist to help people learn to tell their stories and help them find opportunities to share them with people that need to hear it the most.”

Their aim is to: 
1. connect every parent who’s child is diagnosed with Down syndrome to a family raising a child with Down syndrome. We believe a little bit of hope can go a long way.

2. train to parents of a child with Ds to help equip them to have a phone call with a parent who just received a diagnosis for their child. These parents become Hope Advocates (which I have signed up for).

3. provide free resources to medical professionals to help them deliver a Down syndrome diagnosis. Medical professionals don’t receive specific training in medial school on how to deliver a Down syndrome dialogs, and it isn’t something they do everyday. In addition, most medical professionals don’t have a personal relationship with anyone with Down syndrome.

I really think social media has benefitted our community and broken down stigmas around Down syndrome. I truly hope all these new efforts and storytelling shines a light to new parents that their child is worthy. 

Wednesday, August 15, 2018

First Day of School!

I feel way less overwhelmed this year - both girls are established in their schools (Nora 1st grade) and Hannah has her same teacher, continuing with the 3’s class for her second of three years. 

Nora already knows two kids in her class and when I dropped her off at Extended Day, at least three kids ran up to greet her. I tried to steer Nora to greet the Kindergarteners because they could be nervous. She said “Mmm I don’t know.” Argh! We need to work on choosing kindness. Nora can be a leader, but sways a bit towards the bossy side. 

Hannah had no reservations when Nora left with me. And based on my sitter’s photos, she got on the bus very easily : ) 

I even signed up for PTA this year - ! Not sure how much I can contribute, but I’m going to do my best. 

We had a welcome breakfast at the elementary Saturday AM and I recognized one mom whose daughter is pals with Nora - even I felt better that I’m starting to feel more comfortable and slowly meeting families. 

Family Selfie!

Biggie Girl!

Autonomy in dressing self...