Wednesday, May 25, 2016

Ds Parents: Online Community + Support

I’ve come to the personal realization that part of why individuals with Ds have more acceptance and inclusion is due to social media. Truly. By families showing their typical lives and what life is like with a child who has Ds, the general public is realizing their preconceived notions of Ds are pretty wrong. 

I still frequent the Babycenter message boards to find newly diagnosed Ds pregnancies or births. A lot of us Ds Moms tell our stories and show photos - reassure terrified parents that life will be normal. 

THIS is appreciative. THIS is what I want everyone to understand.

I had an online chat with another Mom about painting life too “flourishy.” Our lives are a joy with our children, but we admittedly have more hurdles and very hard days, too. Personally, I probably over-compensate the Ds joys to convince prenatal diagnoses to continue their journey and not terminate simply because of an extra chromosome.

The hard days are more in my own head/my own emotions. I cringe when people whine about petty things. It stings when people say “We had a DNA scare,” “Thank God he/she was ‘healthy’ and ‘normal.’” I slip away when parents start talking about milestones. I nearly smacked a fellow Ds Mom when she whined about her daughter walking by age two. I looked her in the eye and said “Well, I’d be happy if Hannah was crawling at two.” I think she realized what she was complaining about and replied, “It’s all relative, isn’t it?” Yes, it is.

I follow so many parents’ blogs. I bookmark their posts for future reference and reassurance. Kelle Hampton was one of the first Moms I followed after Hannah’s diagnosis. She wrote a book about her daughter’s birth diagnosis and the year after. 

Bloom

She posted this a short while back that made me smile and know I’m doing it right and a lot of people have my back:


Catch Up

What? Over three weeks since my last post? I guess that’s a good thing - nothing majorly throwing off our groove lately!

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Hannah’s eye patch has been going well... although I’m not noticing a difference : (  We have a follow up the first week of August... 

We’ve seen some progress with Hannah’s gross motor skills. We’re working on sitting on a “bench” and having her pull to stand while holding our fingers. She loves it. She’s also straightening her legs while on her belly so she’s an inverted-V shape. All this is great, we just need her to to not lock her legs... : P 

She’s also pulling to kneel everywhere which is great too...

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We regularly get an annual pass to the Cincy Nature Center - it’s just down the road and a wonderful huge park. Hannah cannot walk and strollers are not easy or allowed in certain places... We never did baby wearing so we decided to get a hiking carrier! They roll pretty pricey, so I went on eBay and found one that was “reasonable.” We’ve already used it at the Nature Center and at Parky’s Farm at Winton Woods - we love it and so does Hannah! 


The 37-lb test went well!


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Well - it happened. Dance is done. About two weekends ago, Nora said she was “too tired” to attend dance [and a retirement home performance only 45 minutes after class!]. So Tim laid out that if she didn’t attend that day, she was done. She knew. The day was a little tense. At some point when I was out, Nora turned to Tim, “I’m sorry. I didn't really like dance. When I went to Adalyn’ class the first time, I did have fun and thought it would be fun, but now I just don't want to do it.” Wow - to apologize and articulate her feeling and reasons? Nora knows. She gets it all. All the time.

But photo day happened prior to that; where I miraculously got her hair in a minuscule bun. We now have an expensive Halloween costume that will be worn until it is threadbare. I was also the only parent who was not purchasing photos that day. Good ol’ Stine - I ain’t payin’ for that hype!






We’re taking the summer off from activities. Plenty of studies show that unscripted play [and the great outdoors] are so important. I’m not rushing for another activity. Nora said she wants to try Tae Kwon Do, which I’m all for... We’re just going to wait out a bit to see if she really does want to try. 

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Also - preschool year one is a wrap! What a blur! Nora loved school so much. She’s excited to be in the 4’s class next year. Which is strange... I feel like Nora should be heading to Kindergarten next year... based on her behavior and cleverness, she just seems older. Plus she will turn five [!] earlier than her classmates. 


First Day - Sept 8, 2015

Last Day - May 10, 2016

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Finally, had a hard morning this past Monday. Nora received a gash on her palm Sunday. It wasn’t a huge deal to her. Monday she woke up thinking it was still the weekend - ruh roh. I broke the news that we were headed to the sitter’s which threw her into turmoil. (I’ve learned you have prepare kids for what’s to come - surprises are not good.) So this evolved into a truly emotional meltdown for her.

Nora was sobbing real tears, incredibly sad, she did not want to leave. Sobbing for someone to stay home with her. She gutted me... working Mom tears were bubbling up. It’s impossible to explain to a four-year-old that some Mommies work outside the home so I can pay for medical bills, so I can help pay for Daddy’s eventual new car, so we can replace our dilapidated house siding... 

I remained calm and sympathetic the entire morning. Able to get her in the car, had to physical wrestle her into Alison’s house. I sat with Nora for a long time. Eventually realizing a lot of her worry was about the cut on her hand. She didn’t want the sitter or any other children touching it or fixing it. I reassured her she was in charge of her boo-boo; no one would touch it until she said it was okay. This seemed to alleviate some worry, but I still had a hard time leaving her - half an hour after I should have left. 

And of course when Tim picked her up, she’d had a great typical day : ) I’m thankful for Nora’s adaptable personality! 


Sunday, May 1, 2016

Race Season

It’s that time of year - early May is race season! 

Flying Pig, Nashville Rock ‘n’ Roll, and numerous more. 

I didn’t even run a Half until after Nora was born. I think I’ve only run three though it feels like more! 

A friend of mine commented on how proud she was of me finding time to balance myself and clear my head - it’s true - that’s what running is for me - it’s my “thing.” My outlet. 

Before [and after] Nora was born, my weekday runs were immediately after work. Nora was too young to eat dinner with us, so it was easy. I think I did this up until I became pregnant with Hannah and Nora was two and a half, older and eating dinner with us. 

Once I got the clear to run after Hannah - hmm. Two kids to feed and get to bed meant no more after-work running. And I have zero energy once they get in bed to run. In the winter of 2015, I was able to squeeze in three miles at lunchtime at work. The Cincinnati Squash Academy is below us with locker rooms we can use. Now and then a workmate ran with me. 

However, work increased and guilt came to play being away for that hour [I know it sounds ridiculous, but that’s how hard my office works]. 

So almost a year ago I bit the bullet and decided 2X a week to get up at 5am and get in a few miles before the rest of the house woke. Luckily I’m a morning person and it really does jumpstart my day. As they say, the hardest part is simply getting out of bed. My determination is strong enough to get me up. I can honestly say I don’t feel more tired after running at 5am. 

So back to this weekend - I ran the Pig 10K. This is the 2nd year where I’ve “just” done the Heart 15K [March], Pig 10K[May], Hudy 14K [Sept], and the Queen Bee Half [Oct]. It’s a very comfortable running schedule. 

Loads of friends posted their race photos today and I find myself envious of running 13.1! Even though nearly every friend had a really hard time! 

Still get a medal for the Pig 10K!


We’ll see if I decide to do two halves in 2017. For some strange reason in my head, I don’t want to until Hannah learns to walk; we have most our time with her on weekends, those mornings can be used to work with her learning motor skills. I’m crazy, right? 

Anyway, I think I’ve found my new running schedule and it works. I’m grateful for a supportive husband and I try to work around my family. 

I told Tim, I want a bumper sticker that says “I’d rather be running.” : )

Painting!

I think the last painting we did was Nora’s pink wall which became a disaster? THE Pink Wall  

Our house was built in 1980. I think updates on *just* the first floor were made within the past five years. They put most of their focus on the first floor. New [cheap] carpet, older IKEA cabinets [which are still great], and the huge amount of this PEAR paint color. 

Now don’t get me wrong, I don’t dislike the pear, but it’s a bit much for our entire living and dining room. Plus it’s a touch dated. Trends now are for WHITE - light and bright. How can you go wrong? 

You’ll remember our kitchen was a chocolate brown - very early 2000s. Chocolate Kitchen  I’m still so happy with the results. 

We bought more paint with primer included. Prepped/taped on Saturday night. Sunday came and knowing Nora, she’d want to be involved. We tried to give her her own paint brush, but the globs of paint dripping from her brush threw Tim into stress after only 1o minutes. I stepped in and tried to direct her [with more patience]. Tim threw in the towel super fast and took the girls to his Mom & Dad’s so Christine was alone in the house to paint two coats in the dining room on her own!! It was such a nice day even Ailo stayed out - it was a bit surreal. 

After learning from my Dad to lay it on thick [despite what professionals say], I was done with two coats in around two hours. It makes a huge difference already and our next step is to replace the weak lighting fixture... I originally thought I wanted a drum light, but have been seeing rattan/Bohemian fixtures like this one that we may turn to: Boho Fixture

Dining Room before

Dining Room after

You can see how bold the pear is above - it feels more intense at night!


We also painted over the chocolate brown wall that you see as soon as you enter. Today we hit Home Emporium in Springdale [Best. Store. Ever.] We found a large mirror for $60 to bounce some light from the front door - I’d like to flank the mirror with some smaller art pieces. 



And eventually Tim and I agreed we’ll paint the living room a cool light grey for a calmer effect. It’s a two-story job, so we may end up hiring someone...