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!

-------

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...

-------

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!

-------

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. 

-------

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

-------

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! 

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...

Hannah’s 1st Heartiversary

I cannot [and can?] believe it’s been one year since Hannah’s heart repair.

The time leading up might have been more stressful than the day itself - and a lot of parents in the same boat would agree. I think Nana and Grammy helped us for six weeks [?] to keep our girls quarantined before surgery. We were bumped three times. Tim had a hernia surgery in the middle of the waiting. Did I mention I nodded off at a red light during the Hannah sick/Tim recovery week? It was hard for everyone! 

I’m still amazed we were home in 3 1/2 days. The surgery didn’t seem to phase Hannah’s disposition. 

I’m still amazed that modern medicine/surgeons constructed a missing WALL in her heart to create chambers. They created valves to control her blood flow. Just mind-boggling. 

I’ll never forget the wave of relief and emotion that rushed over me when the staff came out to say “She’s all done -everything went great.” After a year of anxiety and stress, it all washed over me and I cried. I think all of us in the waiting room cried. What a flipping huge deal for a nine-month old to go through. 

I will never stop fighting and shouting the strength and ferocity of Hannah. She is our little Warrior then and forever.

Thanks to Tink and Key for their fantastic [and well-designed] shirts for all us Warriors!

Saying Goodbye to Grandma

We said goodbye to Grandma Heitkamp this past Tuesday. She was my last living Grandparent.

As always, it’s nice to see family but not under the circumstances. The last funeral[s] I’d been to were for my Uncle Keith and Grandpa Heitkamp - both while I was pregnant with Nora. 

I didn’t not want to take the girls, but it was important to me for them to see family. Though with Grandma’s 32 great grandchildren, it’s hard to keep track of all the kids!! 

Grandma & Grandpa with their nine children. Mom is the 3rd oldest. Gary & Jerry are fraternal twins [have I mentioned there are three sets of twins on this side of the family??]

Grandma with her children & their significant others - Sept 2015

We currently do not attend/belong to a church. Nora would probably be fine during mass, Hannah would not; babbling, yelling, laughing, etc. Thankfully the church had a nursery room in the basement where some other cousins’ kids were being kept busy. Tim stayed down there with the girls so I could focus on Grandma and Mom. 

It was a beautiful day and Grandma now lies next to Grandpa. 

After Grandma was laid to rest, we had lunch - I think the basement was filled with a crowd the size of a wedding! One of the warmest feelings was all of Dad’s siblings and spouses came to support - what showing of love towards Mom! 

Grandma meeting Hannah - I think she was around two or three months here.

Grandma with my girls - Sept 2015

I have a handful of fun/interesting memories from my Grandparent’s dairy farm... I was terrified being in the milking room because there was nothing to “keep” the cows from coming down on the floor. All cats and dogs were outdoor. I remember hearing the sound of piglets either being castrated or their tails cut down - Mom can you clarify that memory?? 

Stephanie and I remember poking around the farm only to see a frozen calf behind one barn. Her or I kicked it. Crazy kids. 

I remember Uncle Jerry lighting off fireworks and being terrified in my Mom’s lap. 

I remember Grandma always had some ice cream treat in her deep freeze - either a 5-gallon tub of something or drumsticks. 

I believe this is around 1985 - I’m on Grandpa’s lap, around five years old. Mom is in the green holding Stephanie and Katherine is not born yet! This is just eleven [!] of their 31 grandchildren.

I remember the smell of their mudroom [?] - to this day, strangely, there are some Asian dishes I cannot eat because somehow their taste reminds me of the SMELL of that mudroom. 

I remember the packaged oatmeal cookies in the cabinet, with the waxy crayons nearby. 

I remember Aunt Linda using that green & pink Maybelline mascara - the tube I loyally use to this day. 

Little Christine - I’m guessing around five or six [?] with Aunt Linda, my Godmother. I’m pretty sure I specifically asked for this rig + farm animals. Also, my overalls are clutch.

But the memory I will never ever forget to this day is walking in on Uncle Jerry and Grandpa checking on a pregnant cow. I saw Uncle Jerry, elbow deep “in” the cow. Pulling his arm out with all types of fluids on his arm. I’m pretty sure I bolted straight back to Mom in the farmhouse. 

We’ll miss you, Grandma Heitkamp. And we still miss you, Grandpa Heitkamp.

Keeping Our Eyes Forward

This week was not only busy but emotional in varying degrees. 

To preface a lot of this, my maternal Grandmother [last living grandparent] had a cardiac event about a month/5 weeks ago. After being in the hospital for several days, she’d had a heart cath. Was shortly sent home with 24hr care. She was home maybe a week, if not less, and had a major stroke. Went back in the hospital and not responsive, though her vitals kept steady. She was taken off all artificial means of support a week ago today... [Saturday the 16th]. 

Tuesday Nora had her preschool art show at the Oasis Conference Center [again, what is with all these preschool productions??] It was from 6-8pm, so with the girls’ routine, we went right at 6pm, then Nana & Papa took us to Skyline. Nora only ever wants crackers & cheese - fine by me!

Hannah’s first Skyline! [Which was crackers, beans & rice]

Lemonade, e’rry day.

Hey Girl

The Sitter’s son had a fever Tuesday evening so we played “just in case” and sent the girls to Nana & Papa’s Wednesday - a nice break from their routine. 

Nana said Nora was outside and declared, “Oodelally I need to take a nap!”

Thursday morning at 7:30 was Hannah’s next Ophthalmology check-in. The entire family was up by 5:30am - Zzzz. I just assumed we’d be in and out and be on our way. The Doctor is a little socially awkward and doesn’t say a whole lot. After looking in Hannah’s eyes, even with her glasses on, he felt her left eye was still turning in a bit, so he started telling me about patching - wait, what? At least two hours a day for three months. :: Groan :: We’ve dealt with harder, so we can manage - I was mostly worried about the test of wills between Hannah vs. patch/eyeglasses. 

So Hannah and I head to the car around 8:45am. I go to get us in [her seat is behind my driver side] and see the silver Jetta next to me was clearly in a rush because not only are they parked at a slight angle, but they’ve left approximately 11" for myself and Hannah to get into our damn seats. Both of us had to get in on the opposite sides! THEN I noticed the lovely large scratch on the back corner of my bumper where the s*#!head swiped along my car!! I don’t get mad often, but this was just inconsiderate. 

I understand if you’re coming to Children’s, it could be an emergency or something bad, but for Pete’s Sake, take the time to park properly and not damage someone else’s car!! I thought about taking a photo of their license, but what good is that going to do? This wasn’t a police-type situation. I wrote a note with a shaking hand, letting them know I understand it’s no good being at Children’s, but have the decency to not damage others’ car and leave a note. 

I left my phone number. I didn’t expect them to actually call [they didn’t]. I imagine my note is balled up in the garage. 

While all this was happening, I heard my phone texts going off - briefly saw my sisters’ names. 

[In poor judgement] I was reading the texts while leaving Children’s - my sisters had found out Grandma had passed. The cherry on top of my morning. It was all too much to deal with before 9:15 in the morning and I just started crying. Called Katherine to vent and cry [thanks Katherine]. 

It’s entirely too sad to lose family members, I especially hate having those loved ones go through medical events that just pile up and they have to leave this life in a hospital. I wish everyone could just transition peacefully in their sleep.

--------

Friday was a new day. Our bosses were traveling so a handful of us actually went out to lunch and socialized which was a breath of fresh air. We all left work early so I was able to squeeze in a three-mile run before getting the girls. Refreshing!

Help Me Grow went to our Sitter’s this past Tuesday and were impressed at Hannah’s arm strength. We’ve all been working very hard with her. She’s slowly starting to pull herself to her knees. She’s surprisingly been great with the eye patch + glasses. Going beyond the 2hr requirement per day. Her eating is fine - she eats when she’s hungry. I mean, dang, look at Nora - girlfriend eats like a bird now - she’s just too busy being four! I’m a grazer too! 

Since having Hannah, though, I know that we’re all fine. I’m grateful for my wonderful life and have great memories of my Grandma [and Grandpa] - I’ll have to share photos in my next post!

I have a great husband who knows how to pick me up!

Patchy McPatcherson! Arrghhh Mateys!

Nora's Temporary Playhouse

Both of us are excited Nora is old enough to stay outside while Tim does yardwork and knows to stay close to the house, knows to come in and get me if she needs me, and does fairly well at not bothering Tim too much.

I’ll admit, the one thing we should have waited for in a house was a better yard. We both accept we moved too fast on this house three years ago. Oh well, live and learn and adapt. We essentially have NO flat space for a swingset, we may be able to manage some type of playhouse at the top of our hill - so this past weekend Tim set up our tent [I think it was last used in 2010??]. 

He patiently got her play table, a sleeping bag, some snacks and coloring books. I even peeked in and she was reading Disney books and listening on her Walkman. We all win!

Now if we could just find a free/used playhouse!

G-Tube Update [and Gait Training]

Today I’d taken off [sitter took day off] and Hannah had PT at 8am. We tried a second gait trainer that Hannah could touch the floor, but Hannah has no instinct to move her legs. The PT had to basically “walk” her feet for her to understand. She seemed a little weirded out by the whole thing - I’m only posting the one smiling photo I took. 

Hannah is wearing Nora’s first pair of walking shoes - which means they fit Nora around 12/13 months. Hannah is 19 months and the shoes kept falling off : )

We also had a weight check on Monday [hauling two kids around in the pouring rain is awesome!]. Hannah gained weight over the past six weeks, but not as much as they wanted. The Nutritionist wants her to gain 4-8g a day. Hannah averaged 2.55g/day. Mind you, this was the time period of the stomach bug - a week of Hannah not wanting to eat. 

“Are you adding sour cream, salad dressing, butter, cheese, oils, whole milk to all her foods?” Yes, for real. It feels like a false way to gain weight for a short term goal. Like a fad diet in reverse. Yeah, she can gain weight with terrible eating habits - anyone could! But this isn’t the long-term nutrition I want my child or anyone in my family following. Additionally, people with Down syndrome typically fight obesity due to the low muscle tone. I want our family’s eating habits to nix that.

The Nutritionalist agreed with all my points, but the plan won’t change. It just feels strange to me. Hannah’s not underweight. And once that g-tube comes out, I’ll need to adjust her diet to get all the added butter out. Gross. 

So as it stands, she still gets two tube-feedings a day and we’ll have another weight check in two months. I don’t forsee the tube coming out by age two, but maybe by the end of the year? THAT would be the best Xmas gift a Mother could receive!

Catch Up!

Gosh I’m not even sure what we’ve been doing the past few weeks...

We had a Down syndrome playdate almost three weeks ago now - it was nice... but it left me feeling blue. You know, the whole mobility thing. 

We’ve had a lot of fun playtime with lots of friends. 

There are SO many babies being born this year - it’s hard to keep up and keep track, but fun to see the additional babies or first time babies. 

First week of April [April already?!] we had PT and Hannah tried out a professional gait trainer. It was a little too tall for her, but we could tell she was itching to push off! We’ll be trying with a different gait trainer tomorrow, so I’ll be curious to see how it goes! 

Hannah also had PT with Help Me Grow [HMG] - her 18 month assessment. Everyone across the board has been happy with her progress [even though it’s hard for me to see]. Her core and legs are strong - we know her arms are not. She’s getting better at pushing herself up from the side-laying position. 

That swoopy hair just slays me! Hannah will have longer hair than Nora : )

Awww Doggie!

In Nora’s world, it’s just Robinhood. That’s it. Robinhood. I realized I had a box collection in the basement of old Disney books with read-along cassette tapes [who can play those anymore??]. 

[not my photo - swiped from Internet]

They were a hit. Mostly Robinhood. She carries that book everywhere, pretends she’s Maid Marian, etc, etc. Tim even went so far as to find a personal cassette player that also transfers the audio to MP3. I’m not sure how long it’s going to last, but it’s been a good two weeks - that’s a long grip for Nora. 

*Note - I had to throw away the Tar Baby book. She asked me to read it to her and I hesitated. I made my way through it, cautiously. I think Nora said “Tar Baby” once afterwards and that was enough for me to say “NOPE.” Not acceptable now days!!

Nora is playing “Mommy” heading to Kroger. With sunscreen on her face.

IF Nora stays in her room at night - for five nights - then she’ll get Robinhood.

I’ve never seen her brush Ailo. And we barely go out to eat. And she NOW dislikes mac-n-cheese [!!!].