Hannah Videos

Family walks on the weekend are so great - and the two-seated wagon is perfect until Big Sister wants to pull Little Sister.

Hannah is slowly getting the hang of signing. She blows kisses when we say “I love you.” She understands “Night-Night!” and rests her head on her hand. She can locate her nose, waves “Bye,” and supposedly signs “more” and “again” with our Sitter. She’s definitely making progress, yet it’s strange to think back to Nora at this age, talking clearly to us.

Hannah does say “Mama” and “Dada” and uses many vowels... she actually quite vocal, but this will not necessarily translate to clear speech later. I actually enjoy Speech Therapy now because we’ve graduated past eating and are now on actual communication. I enjoy learning sign language and being able to sit back and watch the therapist “play” with Hannah. Even Nora has been learning signs which is a treat : )

This 'N' That

Hannah is now sticking her finger in her nose. She’s not digging, I think it’s just a new sensation.

Thursday morning I got Nora’s outfit together for her preschool Easter Egg hunt. A cute patterned dress. Nora looked at it, threw it on the ground and said, “Mommy, this dress is too FANCY. Easter is about JESUS.” ... Wow. Noted. I got her a skirt instead.

We had a difficult evening with Nora this past Thursday... did you know Nora has a strong personality?? [sarcasm] She packed up her lunchbox and backpack and said she was going to Florida. Okay, girl. This photo shows what she packed in the lunchbox - you never know when you’ll need to shiv someone! 

I ran the Heart Mini ... three weeks ago now? A 15K [9.4 miles] - it’s my favorite distance because I don’t have to train “too” hard. I’d like to make it my yearly tradition since Hannah’s heart has been repaired and I know so many whose hearts are also repaired or struggled. Last year it was about 35˚ and I had a PR [personal record] of about 9:37 pace. This year was cloudy and about 60˚, however they scheduled it on Daylight Savings [!!!] and added a brutal 1/4 mile uphill. Everyone I talked to had a hard race. My pace was a minute slower than last year! I’m just glad the rain held out. 

Ailo turned seven on St. Patrick’s Day - we rescued him on St. Patty’s in 2010 : ) Still think we hit the jackpot with him; great with kids, easy-temperment, and a soft-cuddlebug. I’d clone him if I could!

And in super small house updates, Tim is swapping out the original, old beat up registers with new ones. Our living room paint color came with the house and you don’t really notice it during the day with sunshine. At night, with more lights on, it is GREEN. In a bad, not-calming way. Some day we’ll get around to re-painting it. 

DIY doesn’t happen anymore - a four-year-old who wants to help and taking care of the 18-mo old. It basically happens when one or both are sleeping now days!

I’ll admit, she watches more TV than she should, but her imagination and self-play is still fantastic.

Two birds with one stone!

Eating at our friend’s, the Sheehan’s house!

Ava + Nora

I love cooking. Fridays have become crockpot days for ease. However, adding a WHOLE box of pasta to the minestrone is NOT what the recipe called for, Christine!! DOH!

World Down Syndrome Day 2016!

Happy World Down Syndrome Day 2016!  [tomorrow, 3/21 - three copies of the 21st chromosome]

We had our WDSD 5K this morning at 10am - again, a cold day for the first day of Spring! Thankfully the sun was out and it was 34˚. Hannah stayed with Nana & Papa so she could get her tube feeding and stay warm. I’m certain next year she’ll attend : ) 

Hannah had loads of support! Grammy & Grandpa Batty, Aunt Stephanie, Aunt Katherine & Jeff, Great Aunt Suzanne & Uncle Randy, William & Evelyn, my friend/coworker Emily and her family and my coworker Brendan and his girlfriend Cheyenne - Thank you to all of you for supporting the Ds community! 

I came in second place in my age group - woot! I ran rather fast which I do during 5Ks. I think a 5K PR! Short race, therefore I don’t need to pace myself as much. 

Coworker Brendan + Girlfriend Cheyenne

Great friend + coworker Emily & family!

Supportive family & friends!

Here is a video to celebrate tomorrow by a worldwide advertising firm. It stars Olivia Wilde and really hits it; I don’t see Ds when I see Hannah. I see Hannah. I think everyone who is close to her agrees and understands now. She isn’t Down syndrome, she’s Hannah:

How Do You See Me?

Another great article by a mother whose son is a touch younger than Hannah. My favorite quote is, “I thought I was educated, but I had no idea how ignorant I was.” It’s true - I’m embarrassed at how much of a bubble I lived in prior to Hannah - no exposure to anyone differently-abled. She really has opened a new door of acceptance and patience I didn’t know about. 

News Anchor to Homemaker

What shocked me in this article was the antiquated information and delivery of their son’s diagnosis by the doctor. “He may never be able to feed himself.” “At best he’ll mop floors of a fast food restaurant someday.” “I don’t want you to feel like you have to be a hero here.” Absolutely unreal. He or she must have decades-old information that is no where close to what individuals with Ds accomplish now - clearly. 

I hope I don’t sound like a broken record... I really know now that Ds isn’t that big a deal. Yes, it will have its hurdles. I’ve learned you can try to plan your future but you only have so much control over it - like they say, you can only control how you react. And my reaction is to be the biggest cheerleader for my daughter I can. 

Hannah, you are pure sunshine. Well, and maybe some cranky clouds now and then : ) 

Photos and Frustration

First are some photos from some fun friend playtime; meeting babies Llewyn and Ewan! 

That’s a lot of kids! Big Sis Evelyn, Tim is holding Evelyn’s brother, Ewan. Ellie wanted to join us, too!

Mr. Ken holds Ewan with the girls!

Daddy William with Ewan, Daddy Chris with Llewyn.

This past Saturday was Hannah’s birth group playdate. Just her and I went for the hour. It’s always nice connecting with the other families; talking about our therapies and hurdles. Then I became a bit sad. Hannah is the only kid not on the move. A lot of the kids are about to turn two - they all had their ankle supports and toddling around. Most other kids were at least crawling over everything. Even the kids younger than Hannah. It broke my heart. 

I’ve been down about her lack of mobility since seeing her peers; are we not working her enough? Is she ever going to move? I have slight guilt for working. If one of us stayed home like every other Mom in our group, would she be moving by now? Is our sitter doing enough with her? I’m pretty down about it. “She’ll get there.” Will she? I know about 3-year olds with Ds who don’t walk. I don’t want to get to that point. Seeing your child SO behind even her Ds peers is crushing. I’m trying to focus on all the good we have, because we have a lot of it.

Hannah, Wyatt, and Bea. Wyatt also has a g-tube so his Mom and I converse a lot!

*“Well Christine, why don’t you just stay home?” Easily said, right? Then we’d be living in an apartment, have to find new insurance, struggle to pay our own bills, etc. We’d probably have to give Ailo away... you get the picture?

Not every family has the option for someone to stay home. Some women also enjoy working outside the home. Also, why aren’t men called “Working Dads?”Also read a great quote from Emily Henderson “...men should lean OUT instead of women leaning IN.” Right on, Sister. Sorry about the tangent!

Sad in the Community

Joey Feek passed away today.

I found her/their family through random internet searches when I had Hannah - another family who had a [birth] diagnosis of Ds for their daughter, Indy.

I’ve posted about the family before... I think the combination of being close to my age with a daughter close to Hannah’s age. Knowing how much work and support we put into Hannah’s development - I think that’s what jabs me the most. Little Indy needing her Mommy as she grows and develops... but I can tell they have a rich village who supports and surrounds them.

I literally cried tonight on the couch when I found out - over a stranger! Tim was probably shocked seeing me cry out of the blue. 

I’m happy she fought long enough to see her daughter’s 2nd birthday. 

I’ll keep following them to watch that fun little girl grow.

*Also – I purposely avoid topics/books/movies that I know will make me cry. So don’t clink the link unless you get fulfillment out of waves of emotion:

 One Last Kiss

The R-Word

I’ve never liked the R-word. Retarded. It’s clearly meant to be negative, even if not being directed towards a person.

I’ll admit I’ve used it in the past. Then I grew up and realized it simply sounds impolite and rude. 

Then, lo and behold, I have a child with Ds. I have grown a bit sensitive now; Hannah’s delays and perceptions about her. I’ve heard or read grown adults using the word since I’ve had her and it pierces my heart. You are an educated adult - you really can’t come up with a better word? 

I’ve been having a hard time collecting my thoughts about the word and finally found this brief written piece by another mother that sums up my thoughts very well:

Why the R-Word is not “Just A Word”

Our Horrible, Terrible, No Good, Very Bad Weekend

Oh you guys. The stomach bug. No messing around.

Somewhere, somehow it hitched onto Hannah and started there Thursday night. 

We’d gone to bed at 10pm. 11pm Hannah starts crying. Tim tried to soothe her, then I went in to try. As I sat her up in my lap - BLAT! Over her, me, and Tickle Me Elmo. After cleaning everyone up, we all settled back down around 12am. 

Friday AM, she threw up some more while Tim tried to feed her. I wasn’t sure if it was a stomach bug because we’d taken her off her reflux meds - and that reaction can be rough. But when Tim said she wouldn’t hold liquid down, I knew it was probably the stomach bug. 

Friday Hannah spent half the day with Tim, half the day with Nana here. [Nana we apologize and feel terrible for exposing you : ( ] 

Friday night, went to bed... 2:30am Nora walks in “Mommy my head and belly hurt.” She crawled into our bed, and as I lifted her out - BLAT! Over me, her, and our bed. Sigh. She was still in surprising good spirits as I gave her a bath at 2:35am on a Friday night. She went back to bed as Tim and I stripped our bed and find extra bedding for ourselves. I didn’t fall back asleep until 4am. 6am: “Mommy! I spit up on my pillow!” She did - thankfully just a small amount. Also thankfully, we all slept another hour or so. 

Saturday Nora was okay - not hungry, but drinking fluids. I ran out to Target and Kroger to get weekly needs. I was feeling off. 

Nora napping on the floor Saturday - 11am

I got home and I slowly went downhill. I napped from 2-3pm. I was nauseous all afternoon, waves of it. Finally at 5:30pm it culminated to an epic bathroom run. Ugh - I forgot what it’s like to get sick from a virus - violent and terrible. 

Tim put the girls to bed, I went down at 7:30pm. Slept until 5:45am when Nora got up to go bathroom. She started hoovering food right away. 

I was weak Sunday AM from not eating, but felt better - I immediately started drinking tea and toast to get my energy back in case Tim fell. Which he partly did... he never vomited like the rest of us. 

The juxtaposition of a sick baby; snuggles.

You know how I Nora is better? She’s chewing on AILO'S DOG TOY.

Nora and I managed a half hour outside this evening. I was so upset our entire weekend was wasted - it was so nice outside. 

Now there’s a beautiful thing!

It was amazing how quickly Nora bounced back. Hannah, however, still has not. No appetite since Thursday. Has been laying her head on everyone, constantly wants to be held. Just not herself still. Breaks my heart to see her so lethargic. 

Hopefully we don’t have to deal with that for a long time - BLAT!