I have SO much catching up to do - the past two weeks have been insane, so I’m just going to start with this amazing video from the UK.
First, the preference in the UK is Down’s syndrome. The preference in the US is Down syndrome. Dr. John Langdon Down classified the condition, he didn’t possess it - are you following my grammatical lesson here?
Anyway, this video is so totally awesome - I love seeing adults talk about their condition. Not to mention, how adorable is that baby?! She reminds me of Hannah who makes those exact sounds : )
I don’t necessarily know the English cultural references, but everyone in this video is so clever : )
What People with Ds Are Tired of Hearing
Thursday, August 4, 2016
Thursday, July 21, 2016
For REAL Parenting
Serious subjects in the Kron household tonight.
During dinner, Nora in her usual walkabout/talkabout fashion said she was going to marry a man. Sure, Nora, you can! Then she started thinking... well, if there’s a girl who doesn’t get married in town, then I’ll marry her. Can I marry a girl?
Yes, Nora you absolutely can. She has asked about marriage before and we consistently tell her she can marry whomever she wants. I don’t need to explain what Tim and my beliefs are...
Well. Tim just informed me that while reading her Highlights magazine, Nora saw an illustration of a black boy and made some comment about only marrying someone with the same skin color as her. WHAT THE HELL?! I really hope that’s just four-year-old logic in play??
Tim did a great job explaining that we all have different skin colors - even within our own family [pink, peach, olive, etc] and that we love and accept everyone even if they aren’t exactly like us. *We can have differing opinions and still respect each other.
*Are you listening adults?
This kind of rolls into later down the road when Nora realizes her sister isn’t *quite* like everyone else and we have to explain that even people with delays and disabilities are just as loved and accepted as everyone who is typically-abled.
Heavy subjects for a Thursday ya’ll!
During dinner, Nora in her usual walkabout/talkabout fashion said she was going to marry a man. Sure, Nora, you can! Then she started thinking... well, if there’s a girl who doesn’t get married in town, then I’ll marry her. Can I marry a girl?
Yes, Nora you absolutely can. She has asked about marriage before and we consistently tell her she can marry whomever she wants. I don’t need to explain what Tim and my beliefs are...
Well. Tim just informed me that while reading her Highlights magazine, Nora saw an illustration of a black boy and made some comment about only marrying someone with the same skin color as her. WHAT THE HELL?! I really hope that’s just four-year-old logic in play??
Tim did a great job explaining that we all have different skin colors - even within our own family [pink, peach, olive, etc] and that we love and accept everyone even if they aren’t exactly like us. *We can have differing opinions and still respect each other.
*Are you listening adults?
This kind of rolls into later down the road when Nora realizes her sister isn’t *quite* like everyone else and we have to explain that even people with delays and disabilities are just as loved and accepted as everyone who is typically-abled.
Heavy subjects for a Thursday ya’ll!
Sunday, July 17, 2016
Just Some Photos
 |
| Hey. I’m Nora the Baby. |
 |
| Typical dinner at our house. |
 |
| Saturday Morning Sisters : ) |
 |
| MA! THE PHONE! |
 |
| Peek-a-boo with napkins. |
Hannah Updates
Hannah wants to move! We had PT at Children’s on Friday. We only go once a month. I don’t know that we’re gaining a whole lot from it... I guess I want to stay on their “roster” in case we need them after Help Me Grow leaves us at age three [sniff!].
Our original gal is on maternity leave, then we had a dude who was a filler, now we have another regular whom I really like and pushes Hannah a little harder - I like that. She noticed that after one month, Hannah had improved - she is trying really hard to climb!
Hannah can maneuver herself enough to climb our ottomans and shorter steps! Although she doesn’t seem to be doing it the “correct” way, she’s popping her legs up and now pushing herself up with her arms to stand supported! She can’t go as far as standing against the couch, but we’re so proud of Hannah! It’s these small milestones that typical kids breeze past that we cherish. Hannah has to work twice as hard, so it’s much more meaningful for our family.
Nora and I were driving around today and she said something to the effect of, “Mommy, when I turn five, Hannah will be two. Then she’ll crawl and walk and talk and I’ll cry.” Because you’re so happy, Nora? “Yes.” Then she tried to force herself to cry which was adorable. She gave up; “Mom, I can’t get any tears out.” That’s okay, Nora : )
We had a nice quiet weekend, cheering Hannah on as she pushed herself to supported standing.
Nora played in the dirt and made some homes for bugs. Hey man, I’m all for a little dirt under the fingernails!
Our original gal is on maternity leave, then we had a dude who was a filler, now we have another regular whom I really like and pushes Hannah a little harder - I like that. She noticed that after one month, Hannah had improved - she is trying really hard to climb!
Hannah can maneuver herself enough to climb our ottomans and shorter steps! Although she doesn’t seem to be doing it the “correct” way, she’s popping her legs up and now pushing herself up with her arms to stand supported! She can’t go as far as standing against the couch, but we’re so proud of Hannah! It’s these small milestones that typical kids breeze past that we cherish. Hannah has to work twice as hard, so it’s much more meaningful for our family.
Nora and I were driving around today and she said something to the effect of, “Mommy, when I turn five, Hannah will be two. Then she’ll crawl and walk and talk and I’ll cry.” Because you’re so happy, Nora? “Yes.” Then she tried to force herself to cry which was adorable. She gave up; “Mom, I can’t get any tears out.” That’s okay, Nora : )
We had a nice quiet weekend, cheering Hannah on as she pushed herself to supported standing.
Nora played in the dirt and made some homes for bugs. Hey man, I’m all for a little dirt under the fingernails!
Friday, July 15, 2016
Superhumans
If this doesn’t inspire and give you chills, I don’t know what will:
We're The Superhumans
Talk about badass!
We're The Superhumans
Talk about badass!
Wednesday, July 13, 2016
First Anniversary
Jillian Daugherty Mavriplis and her husband Ryan celebrated their first anniversary! Congrats to the couple - role models for many of us new to the Ds community.
First Anniversary
First Anniversary
Friday, July 8, 2016
Motherhood Around the World
The fourth year of my favorite blogger series is starting again! Motherhood Around the World composed by Joanna Goddard. I’m sure I’ve posted about this series before.
The fourth year starts off with Thailand. I find every single one so interesting! My cousin and his wife live in Spain [she is also Moroccan] so it was fun to see the traditions there.
Enjoy!
The fourth year starts off with Thailand. I find every single one so interesting! My cousin and his wife live in Spain [she is also Moroccan] so it was fun to see the traditions there.
Enjoy!
Wednesday, July 6, 2016
Lately
I guess less blogging is a good thing - life is fairly calm right now, just the way we like it.
Nora: just the usual... I’ve been worried about her learning to swim. We halted swim lessons right before Hannah was born. She has used a floaty vest and doesn’t want to get her head wet - afraid of water up her nose.
This past weekend we went to the Blue Ash Rec pool with some friends and I predicted what would happen [which did]: Nora would see her friend without floatation, diving and dunking under water which would influence her - and it did! Nora stripped her floaty vest [the water was under 2' deep] and began dunking under water and going down the kiddie slide by herself! :: fist pump :: So proud of her.
The sitter’s kids are also starting up lessons at the new swim facility down the road - all the kids had to go along and Nora now wants to start again. This is a good thing! After swim season, we’ll look into signing her up again.
Hannah: Signing just took off about two weeks ago! Hannah signs please, more, cracker, dog, sing, bath, sleepy. She tries to say “dog,” “this,” and “that.” Now that she has two front teeth [which we can never quite see under her lip], she’s trying new sounds. She’ll point and say “ths, ths” - good stuff!
We keep working on pulling to stand - it’s work. No crawling even though she gets on all fours. I’m being patient for now.
No update on eyes - follow up the first week of August - hoping these patches do the trick...
Nutrition - last week the sitter chose not to tube feed Hannah two times because she ate so well! We give her full freedom to make the call - she knows Hannah just as well as we do. I also talked to our Speech Therapist about the calories the Nutritionalist wants us to force into Hannah. She basically said stop tube feeding Hannah - ! We know her, how she eats. Hannah has no trouble eating. She may dip down a bit in weight or plateau, then will re-adjust herself and most likely gain weight. Our ST said she has another family who did just this and it played out well.
I’m a little nervous but Tim’s wanted to pull the trigger on this. If Hannah does drop drastically in weight, we can go back on as needed. The only hesitation is her fluid intake - at most she drinks 1c milk and 1c water a day. We still flush Pedialyte through her daily.
Once a kid is independent of their tube, the medical professionals wait at least 3-6 months before removing it to truly make sure they are independent.
Me: Starting up training for my fall half - the Queen Bee. My last larger race was the Heart 15K. I haven’t run past 6 miles since then. I should be okay - I really need to get a bit stricter on my food, sleep and strength training. I’ve slacked on my food a bit with summer indulgences. I need to get to bed earlier on Friday nights so I have a good Saturday long run.
I try to do a little yoga at least twice a week but need to incorporate more strength in my core and legs... I have a bunch of short workouts I just need to DO.
Tim and I also went to see Phish over a week ago with good friends - it was fun and strange to be gone for two nights from the girls! It takes me a few hours to shift my focus from the girls to myself. Two days gone was plenty - so ready to be home!
Nora: just the usual... I’ve been worried about her learning to swim. We halted swim lessons right before Hannah was born. She has used a floaty vest and doesn’t want to get her head wet - afraid of water up her nose.
This past weekend we went to the Blue Ash Rec pool with some friends and I predicted what would happen [which did]: Nora would see her friend without floatation, diving and dunking under water which would influence her - and it did! Nora stripped her floaty vest [the water was under 2' deep] and began dunking under water and going down the kiddie slide by herself! :: fist pump :: So proud of her.
The sitter’s kids are also starting up lessons at the new swim facility down the road - all the kids had to go along and Nora now wants to start again. This is a good thing! After swim season, we’ll look into signing her up again.
Hannah: Signing just took off about two weeks ago! Hannah signs please, more, cracker, dog, sing, bath, sleepy. She tries to say “dog,” “this,” and “that.” Now that she has two front teeth [which we can never quite see under her lip], she’s trying new sounds. She’ll point and say “ths, ths” - good stuff!
We keep working on pulling to stand - it’s work. No crawling even though she gets on all fours. I’m being patient for now.
No update on eyes - follow up the first week of August - hoping these patches do the trick...
Nutrition - last week the sitter chose not to tube feed Hannah two times because she ate so well! We give her full freedom to make the call - she knows Hannah just as well as we do. I also talked to our Speech Therapist about the calories the Nutritionalist wants us to force into Hannah. She basically said stop tube feeding Hannah - ! We know her, how she eats. Hannah has no trouble eating. She may dip down a bit in weight or plateau, then will re-adjust herself and most likely gain weight. Our ST said she has another family who did just this and it played out well.
I’m a little nervous but Tim’s wanted to pull the trigger on this. If Hannah does drop drastically in weight, we can go back on as needed. The only hesitation is her fluid intake - at most she drinks 1c milk and 1c water a day. We still flush Pedialyte through her daily.
Once a kid is independent of their tube, the medical professionals wait at least 3-6 months before removing it to truly make sure they are independent.
Me: Starting up training for my fall half - the Queen Bee. My last larger race was the Heart 15K. I haven’t run past 6 miles since then. I should be okay - I really need to get a bit stricter on my food, sleep and strength training. I’ve slacked on my food a bit with summer indulgences. I need to get to bed earlier on Friday nights so I have a good Saturday long run.
I try to do a little yoga at least twice a week but need to incorporate more strength in my core and legs... I have a bunch of short workouts I just need to DO.
Tim and I also went to see Phish over a week ago with good friends - it was fun and strange to be gone for two nights from the girls! It takes me a few hours to shift my focus from the girls to myself. Two days gone was plenty - so ready to be home!
 |
| The regular Phish Crew! |
 |
| Post storm - rained on us 2/3 of the show! |
 |
| Our camping neighbors - ! Turns out they were older than us! |
Monday, June 13, 2016
Quality of Life
Not sure if everyone saw the “viral” story about the Mother whose baby was diagnosed with Ds and the letter she sent to her OB who suggested abortion...
Mom's Letter to OB
I had read this on a different website and made the mistake of reading comments made on the story... it was a punch in my gut. People were making mean, hurtful comments about special needs people draining resources, the parents will outlive their child, people commenting how they watched their parents lived sad lives, depleted from caring for their special needs siblings... It ruined my mood for the end of my week.
I thought, “AM I being blind to what Hannah’s future will be? ARE my expectations too high?”
I also saw an OB’s response to this letter:
Ds Ethics
I do agree - expecting parents should always be presented with all the facts that come with Ds; slower development, therapies, possible medical complications. However, to say and assume that the baby and parents will have a low quality of life feels like a subjective statement and not necessarily true.
Those with Ds are NOT always sick. They live to the average age of 60. The divorce rate for parents with a child with Ds is lower than the national average. 96% of siblings felt great affection and pride for their sibling with Ds.
Then a third open letter came out from a woman and fellow Ds Mom whom I admire:
Rebuttal to the TIME OB article
I was shocked at this: “13 percent of doctors admitted to emphasizing the negative aspects of Down syndrome so parents would elect for termination.” Wow.
A new baby shifts any family’s life. I think Tim and I can confidently say we don’t feel our quality of life is “low.” I think most of the families we know in the Ds community would agree.
Hopefully more medical professionals can truly be unbiased, be up-to-date on their Ds facts and show a bit of compassion despite any family’s beliefs and background.
Mom's Letter to OB
I had read this on a different website and made the mistake of reading comments made on the story... it was a punch in my gut. People were making mean, hurtful comments about special needs people draining resources, the parents will outlive their child, people commenting how they watched their parents lived sad lives, depleted from caring for their special needs siblings... It ruined my mood for the end of my week.
I thought, “AM I being blind to what Hannah’s future will be? ARE my expectations too high?”
I also saw an OB’s response to this letter:
Ds Ethics
I do agree - expecting parents should always be presented with all the facts that come with Ds; slower development, therapies, possible medical complications. However, to say and assume that the baby and parents will have a low quality of life feels like a subjective statement and not necessarily true.
Those with Ds are NOT always sick. They live to the average age of 60. The divorce rate for parents with a child with Ds is lower than the national average. 96% of siblings felt great affection and pride for their sibling with Ds.
Then a third open letter came out from a woman and fellow Ds Mom whom I admire:
Rebuttal to the TIME OB article
I was shocked at this: “13 percent of doctors admitted to emphasizing the negative aspects of Down syndrome so parents would elect for termination.” Wow.
A new baby shifts any family’s life. I think Tim and I can confidently say we don’t feel our quality of life is “low.” I think most of the families we know in the Ds community would agree.
Hopefully more medical professionals can truly be unbiased, be up-to-date on their Ds facts and show a bit of compassion despite any family’s beliefs and background.
Memorial Day Weekend and Beyond
Trying to keep up!
Memorial Day weekend [Thursday] Tim and I went to Indy for a My Morning Jacket show [my favorite band since their debut back in 1998].
It was Tim and my first night out since my office holiday party on Dec. 11th - !! I couldn’t believe it. I even checked our calendar - yup. Whoops.
It was a perfect night, loved being able to sit on a restaurant patio with a beer and just sit.
My parents wonderfully spent the night at our house. Katherine stopped by to visit and did some amazing face swaps with her phone and sent them to us. I was crying laughing so hard - especially the Nora/Dad one!
This past weekend was [too] jammed:
Saturday:
8am oil change
9-11am Champion siding consult
2:15 left to drop off girls at Krons so we could make a
4:30 wedding. Left the wedding at
7pm to take advantage of IKEA with no children in tow! Left IKEA close to
9pm and got a nightcap in downtown Milford
Sunday:
8am groceries. Tim left to get girls around
9:15 while I ran. He got home with girls at
11:30am Then off to a friend’s birthday party at
1:30 Was tons of fun seeing people, albeit hot. Left party at
4:30 and had to wake the girls up in the car.
Whew! Looking forward to an empty Father’s Day weekend!
Memorial Day weekend [Thursday] Tim and I went to Indy for a My Morning Jacket show [my favorite band since their debut back in 1998].
It was Tim and my first night out since my office holiday party on Dec. 11th - !! I couldn’t believe it. I even checked our calendar - yup. Whoops.
It was a perfect night, loved being able to sit on a restaurant patio with a beer and just sit.
 |
| Stayed across from The Colts stadium - HUGE! |
 |
| At a state park in downtown Indy - they provided lawn seats! |
My parents wonderfully spent the night at our house. Katherine stopped by to visit and did some amazing face swaps with her phone and sent them to us. I was crying laughing so hard - especially the Nora/Dad one!
 |
| BWAAHAHAHAA! |
This past weekend was [too] jammed:
Saturday:
8am oil change
9-11am Champion siding consult
2:15 left to drop off girls at Krons so we could make a
4:30 wedding. Left the wedding at
7pm to take advantage of IKEA with no children in tow! Left IKEA close to
9pm and got a nightcap in downtown Milford
Sunday:
8am groceries. Tim left to get girls around
9:15 while I ran. He got home with girls at
11:30am Then off to a friend’s birthday party at
1:30 Was tons of fun seeing people, albeit hot. Left party at
4:30 and had to wake the girls up in the car.
 |
| Hannah and her Bud, Stu. |
 |
| 5pm catnap on Mama! |
Whew! Looking forward to an empty Father’s Day weekend!
Subscribe to:
Posts (Atom)