Nora’s New Trick!

Girlfriend can’t blow her nose, but she can whistle - ??

Kindergarten Here We Come!

Last week was a very busy Nora week!

Tuesday was preschool graduation at 6:30pm. Inconvenient for us... we’re typically wrapping up dinner around then. Instead, we left around 7:15, got in Skyline’s drive-thru and weren’t home eating until 7:50pm... when the girls are usually being read to for bedtime!

Photos by Hannah®

Wednesday we woke up to Hannah with a swollen and red eyelid. Craaaaaaaaap. I stayed back to take Nora to her last day of preschool and call the pediatrician when they opened at 9am. Does anyone else feel like 9am is such a late start time? 

Halfway to school Nora declares her belly hurts. She says she doesn’t think she can go to school. Is that a fact? I know she gets slightly carsick and these last minute “Does she or doesn’t she?” really tests me as a parent. 

I didn’t have a lot on my plate at work. She’s pulled this before - if I linger around her too long she takes advantage. Which she did. I erred on the side of taking her home just in case. 

I was mad at myself. I knew she was fine. She was not allowed anything special at home. Why was I a pushover? Because I will never forget the time I took her to Alison’s and she was sick. And I knew it. And when I picked her up that evening, she looked wretched and I will never forgive myself for that. 

So from now on it’s only home if there’s a fever or vomit. I told her once she gets into Kindergarten, you get penalized for missing school. I made her go to swim lessons that night. 

*Oh Hannah’s eye was fine. I saw a whitehead on her eyelid and confirmed with the Pediatrician it was a stye. Lots of warm compresses throughout the day and it was fine. So I basically stayed home with two non-sick children.

Thursday Tim took off to take Nora to her preschool picnic from 11-1pm. Again, super convenient time for families with two working parents [sarcasm]. Nora was also treated to Scene 75 [she loves that place, I can’t stand it - sensory overload]. 

Then Thursday evening we all went down the street a little for Nora’s Kindergarten open house! It’s a brand new school and students only started in there this past fall. I was pleasantly surprised we saw Nora’s actual classroom and even met her teacher, Mrs. Horner! I was surprised they only have two K teachers; one for all-day [Nora] and one for AM/PM classes. 

Nora enjoyed checking out the schoolbus even though I’m not sure when she’ll ride one. We went for all-day K purely due to logistics. Our sitter can’t transport Nora and the bus will not pick her up there. We had to go into a lottery for all-day K and thankfully got a spot. Then we tacked on before and after care [thank goodness that exists now] so we can just pick up and drop off on our way to and from work. 

Nora understand her time at Alison’s is coming to an end, but she’s excited. Bittersweet - she’s been with Alison since she was 18 months old!! 

Nora around 18mos!

Mother's Day

Mother’s Day 2017 was perfect! 

I had a two-year streak of not-super Mother’s Days... 

In 2013 I was prepping for a Monday colonoscopy. Everything was fine, just some “results” of giving birth that have changed my body :: eyeroll :: So that Sunday prep was the absolute worst. I’m a firm believer to get one when you need it, but not until you need to. The “cleanser” I drank was so disgusting I gagged. And the physical “cleansing” is nearly as bad as labor. No, really - I cried. 

Anyway, then in 2014, I’ll always remember Mother’s Day as The Day Before We Found Out. 

Since, then I’ve enjoyed chill, uneventful Mother’s Days. This year was no exception. 

About two weeks ago Nora had her Mother’s Day program at preschool. It’s at an inconvenient time for us who work outside the home - 10:45am. However, it was a good opportunity to take the day off for Nora. Bless her heart, she was so excited. Continuously thanked me for taking the day off work. 

Handmaid's Tale?

She is rocking the side pony just like I did - !

After her program, we went to lunch at a cute cafe in Milford, then to the sweets shop. She just beamed. It was rare and sweet to be with Nora outside the house, just the two of us. It doesn’t happen enough. 

On Mother’s Day I ran almost 5 miles, groceries solo, ate baked goods, did some flower-buying and planting. Just general time outdoors is nice - now that Hannah is walking this spring, it somehow feels easier to get outside. Though it is tiring to chase her - she doesn’t know about safety yet. No fear. 

Family walk!

I’ll miss that tree even if it did cause roof moss.

Oh, our furnace also went out a week ago... thankfully not the system [yet].
The thermostat was old and done so we came up to 2017 with a Nest Thermostat!
It’s bizarre to have such a modern, “smart” appliance in the house.

And Saturday was equally good - I took Tim out for his birthday outing - our first FC Cincinnati match! Aunt Stephanie again selflessly watched the girls for a lengthy near-five hours alone while Tim and I enjoyed some apps and a beer - outdoors, sitting and quietly - before the match. It was lovely! We were home at a reasonable 7:45pm to take over the girls’ bedtime. 

Great weekend and finally feeling like spring!

The Lucky Few

I follow Heather Avis on social media - her and her husband were not able to have biological children. During the adoption process, they were tipped on some babies with Ds who needed homes. Fast forward and they have three adopted children, two with Ds. 

Being a Mom doesn’t mean they have to be your flesh & blood - just having a full heart to raise good people : )

She has a book available out, The Lucky Few, about her journey and learning. 

Down syndrome Adoption

Heather Avis

CCHMC Mother's Day

Send a message to Moms who have to spend their day at Cincinnati Children’s! For every message sent, Busken will include a cookie!

Happy Mother's Day

Hannah’s Medical Updates

Hannah had a hefty day Tuesday April 25th. It started as her rescheduled annual echo/EKG and added on her PE tubes - not due to constant infections, but due to held fluid that was affecting her ears.

Originally we were scheduled for an 11am echo, 12pm EKG and 12:10 Cardiology follow-up. 

We were given instructions to arrive at 7:15am - ! I didn’t understand why so early, but who am I to question the medical schedule? 


The morning went well and I was really more anxious about her lack of food & water before the procedures than the procedures themselves. 

Hannah was pretty good - she was so distracted with where we were, I don’t think she cared about thirst or hunger. [Nothing after 4:15am - right.] Literally every nurse exclaimed how cute Hannah was - I think the glasses have a lot to do with it, but I mean come on - she is adorable : )

Loves putting on socks!

Passing the time!

Around 8:45 we took her to the side room of the OR with the anesthesia team. We all sang Old MacDonald Had A Farm while I held her down... she was out under 30 seconds - it was crazy. And rattling seeing her go floppy so fast.

We grabbed our items and shuffled out to the waiting room. The same waiting room we were in almost two years ago for her heart procedure. I was surprised at the emotions that bubbled up being in that waiting room... sheesh. 

Tim and I grabbed a quick breakfast and headed back up - we weren’t even gone 45 minutes when we were told she was done. Dr. Shott said it went just fine and the fluid in Hannah’s ears was the consistency of rubber cement! I’ve been told by two other Moms that she described their sons’ ear fluid the same : )

Seeing Hannah afterwards was difficult. First, a nurse was holding her and once we arrived, I took her and my poor girl was inconsolable. Probably confused, scared, foggy and a painful IV in her hand. We sat for 20 minutes until she calmed down. 

We went to the cafeteria and the poor thing was exhausted - she slept a good hour in her stroller which was fine - Tim and I could grab some food before our 12:10 Cardiology follow up. 

Poor little ragamuffin with her skinned knees.

By the time we got to Cardiology, you’d have no idea she’d been sedated for a minor procedure just hours before:

We had a nurse and the Cardiology fellow stop in to see us and didn’t see our Dr. for an hour and a half past our appointment time. Apologies just aren’t worth it. 

What I thought would be a routine “everything looks great” - was not. Nothing serious at the moment. Hannah’s left heart valve is leaking/regurgitating more than it was a year ago. So right now she’s going back on a pill 2X a day to control that regurgitation. We’ll follow up in one year.

Will the leaking get better or worse? Her doctor can’t predict - it’s very subjective. Could get better, worse, or stay the same. If - heavens forbid - it continued to worsen, surgeons would have to go back in and repair again. 

Not at all what I was expecting to hear. I guess I blindly thought - and was told - Hannah’s type of repair was typically a one-and-done repair. Just the thought of even a slight chance of going through that procedure again makes my body start to shake. I have been through that battle and I am not sure I could muster myself to power through it again. I had put all those feelings aside and now they are creeping back.

I know many kids who have - or will - go through multiple procedures but I can’t swallow the possibility when I thought we weren’t supposed to go back. 

I know this may not even happen... I plead and am desperate for the pendulum to swing back. So please, please - if you believe in a higher power or any cosmic persuasions, I beg you to put Hannah’s health in your prayers, chants, dances, what have you. 

You’re Not Going To Believe This

*Sorry, not a crazy personal account. 

This is a really great comic about the Backfire Effect - a human behavior we all hold. We have core beliefs and world views and when those beliefs are challenged [even with facts], the same part of our brain that reacts to physical threats also reacts to intellectual threats. Fascinating!

A lesson a worthwhile read for us all:

You're Not Going To Believe What I'm About To Tell You

“Feel Good” Stories

I think I mentioned earlier, there’s been a lot of inclusion discussions among the Moms in the Down syndrome community.

Pardon the phrase in case it’s offensive, but this article written by a disabilities advocate was presented as a discussion point:
Inspiration Porn

The article is specifically about three practices that have become popular in American high schools and a familiar trope in “feel good” media:

1. High school students electing a disabled student to be Prom King or Queen.

2. Organizing and hosting “special” prom events, specifically for disabled students.

3. Allowing a disabled student to “run a play” with a sports team.

And three reasons the writer [who is an advocate for disability rights] has a problem with these practices. And frankly, they sort of rub me the wrong way, too:

1. They are all intended to be “good deeds” for people assumed to be stigmatized and unable to make satisfying social lives for themselves.

2. Media coverage of these events almost always focuses on the kindness of the organizers, relatively little on the disabled individuals these events are supposed to benefit, and not at all on the stigmas and barriers disabled students face every day in their effort to participate in school social life.

3. The events are often further interpreted as encouraging signs that “the kids today” may not be going to Hell after all … the premise being that on every other day it seems like they are, an unfair and insulting idea in itself.

I never thought about theses instances until I had Hannah... and now I see it in a different way. I do understand these practices are done with very good intentions... but it does feel a bit patronizing to me. As if they’re throwing these “poor kids” a bone. In Tim’s words, “I don’t want Hannah to be anyone’s mascot. I just want her to find true friendships.”

I also understand there are different types of abilities - so “regular” this and “regular” that for all kids really isn’t an option - and those are the parents who do appreciate those “special” occurrences. 

This Mom in our community had a great perspective:

I am also uncomfortable with a lot of those news stories about the prom kings or queens, particularly when the king or queen is unnamed, and the story really is about how generous and kind the neurotypical kids are for making such a 'sacrifice". Blech. But I think it's important to tread lightly when people are doing these things to be kind, and when they think they're being inclusive, even if we, the people with skin in the game, know they are not. Because slapping their gestures away or hectoring them without providing a truly meaningful, positive, actionable alternative will only alienate people who could be important allies for our kids down the road. So if the special needs prom is no good, what can we suggest to make the standard issue prom work for ALL kids with disabilities? And that's not an easy fix, because the needs run the gamut depending on the diagnosis, and despite the commonalities, what works for my kid may not work for yours, or hers, or his. My son needs different things than his friend Jack, who has CP and uses a wheelchair, or his friend Erika, who has autism. The challenge, as I see it, is not to just find fault with these things, but to effect meaningful change for the better. And that means a lot of heavy lifting for us, I'm afraid, because no one is more motivated to see things change than us. On a micro level, for me, that's meant pushing [my son]'s school to form a low-key sort of friendship club, where kids with disabilities and standard issue kids can do fun stuff together, but it doesn't feel like a service hours scenario. Ideally, the kids aren't even aware of the agenda. Given the current political climate, I think we've got to work at a grassroots level to make these changes happen.

So. These practices do bother me, BUT I will do my best to understand they are done with good intentions and use it to educate for a fuller understanding and meaningful inclusion - not just one-off “good deeds.”