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.

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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 [!!!].

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