Welcome to my blog!

A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Thursday, January 31, 2013

Optimism vs Reality

In the Down syndrome community especially, when you hear a story about a person with Down syndrome you hear about all the great, wonderful, lofty and amazing accomplishments that people with Down syndrome can have. Who doesn't love a feel-good story? I know I do. It gives me great hope for Lauren's future. And optimism is a wonderful thing.

But the reality is that not all of "our kids" will graduate from high school at 18 with a diploma. Not all of them will go to college. Heck, not even all of them will be able to remain in a "typical" classroom forever. Might not learn to read past a certain grade level. May never live independently. Nevermind about potty training, walking, learning to ride a bike.

But you know what? That's okay.

It's really scary as a parent of a kid with special needs to realize that they very well may be dependent on you for their entire life. It's not what the majority of parents plan for when they think of retirement.

But it's a reality that I think is glossed over a lot of the time. Having kid with Down syndrome, or any other disability, is not always rainbows and butterflies. Sometimes when I think about what will happen when I'm 80 and Lauren is 55 my soul freezes and my heart sinks. It's tough to think about. Or maybe we'll just both have dementia and room together at the local nursing home. Lord help the nurse that has to care for my lazy ass, much less the incredibly stubborn Lauren Hope.

My point is that who the heck knows what the future holds. We're not even guaranteed tomorrow so why am I wasting time worrying about 50 plus years in the future?

As parents in the Down syndrome community- message boards, blogs, in person- we need to rally together and love every family. Accept every family. Envelop every family into the fold of amazing support and encouragement. We can't afford to push families away because we're afraid our kid might end up like theirs. And they can't afford it either. You never know if you'll end up being one of "those" families.

I don't mean for this post to be a depressing or to discourage anyone. It's merely a reminder that we are all in the same boat.

"It's not what we do that matters but how much love we put into it that makes a difference." Mother Theresa

Tuesday, January 29, 2013

Total brag post! Fair warning!

My amazing mother in law took the kids to get their pictures done by an AMAZING photographer, Nancy. PLEASE check out her website here.




 




 
I am totally obsessed with my sweet babies! Lauren is morphing into a toddler before my very eyes. Ryan is the nicest little boy ever, though I am SHOCKED that she got him to not only sit for pictures but to kiss his baby sister at the same time.
 
The pictures of the two of them together make my heart sing in a way I don't think I can explain. When we found out that Lauren would have Down syndrome I was so sad for Ryan and felt like maybe we'd be cheating him. I can't believe I was ever worried about this now. It's like seeing our worries come full circle and realizing we had nothing to be worried about. I can't stop looking at them!!!

Wednesday, January 23, 2013

LOVE when this happens!

This evening Greg, Lauren and I were out to dinner. Ryan had a sleepover with Grandma and Grandpa since Lauren has an 8am doctor's appointment. (Why the heck to I schedule these things so early? I am not a morning person!)

While we were all eating two women were leaving and they stopped to say how cute Lauren was. One of ladies started to turn to leave and then turned back around..

"I have a son. He's 20!" In Down syndrome language (haha) this means I have son with Down syndrome. The last part isn't needed.

It was so nice of her to stop and talk with us! She said he's 20, he has a tattoo, piercings, hangs out with his friends and wants a girlfriend. She said life is totally normal for them. She was bummed that her son wasn't with her, he usually goes out to eat with them but didn't feel like it tonight.

I thanked her for stopping to talk to us and said it's really nice for us to hear from people a little further down the road.

 She simply shrugged and said, "We're all family."

Isn't that amazing?


This is Down syndrome.

She has wheat colored hair that shines in the sunlight like strands of woven gold. Her eyes are so blue that they rival the sky for beauty. Her smile shows pure joy and ignites laughter in the soul of the most downtrodden. Her hugs bring forth contentment. Her love shines through her every action.
 
Her stubbornness gives testament to true determination. Her struggles give way to perseverence. Her delays demonstrate patience. Her surprises teach trust.

 
This is Down syndrome. 

Tuesday, January 22, 2013

My definition of heaven.

The planning has begun for Lo's birthday party! And by "begun" I mean I think about it sometimes. LOL! I am lazy. I can't help it. My only hobby is sleeping and I don't get to do it very often.

Just kidding. I'm not lazy anymore. I joined a gym and I actually started working out regularly about a month ago. It's been wonderful! It's an hour that I can put in my headphones, listen to music that's inappropriate for little ears (Yes, I'll admit it. I listed to rap. Don't judge!) and nobody touches me, nobody talks to me and nobody cares what I'm doing. For parents of small kids that translates into an hour of pure heaven! I've been going 3-4 times a week.

I actually hate working out while I do it. But I feel really good about myself afterwards! I'm hoping I will magically enjoy exercise someday. I want it to just become part of my normal routine instead of dragging my lazy, flabby self to Planet Fitness. I reeeally want to wear a 2 piece swim suit on our vacation. Well, I'm going to wear a 2 piece swim suit on our vacation regardless but I'd love to look fantastic while doing it! We already eat fairly healthy meals. Because of that I don't really have a ton of weight to lose, I'm just in terrible shape. I need to lose 10lbs to get to the same weight that I weighed on my wedding day. Not too shabby! But also not too easy. I'm 5'3" which means that a little bit of weight looks like a lot and it's kind of hard to lose.

Wish me luck. All this writing has made me crave some french fries from Wendy's.

Wednesday, January 16, 2013

Lauren made a new friend!

Ryan and Lauren got to go to ABC Warehouse for the firs time today! Ryan LOVED all the washers and dryers. He even convinced my mom to buy Christmas wrapping paper because he was calling them "pipes" and really wanted some. Haha! He was shouting "Hello!" into each one. Adorable.

Lauren charmed the socks off the sales guy. It turns out he has siblings with disabilites! He kept smiling at Lauren and then finally said, "Can I ask you something? Do you belong to any organizations?" I was so excited! I love when people notice Lauren's extra cuteness chromosome and then also have a positive connection or story. It's very uplifting for someone like me who is very new to this journey.

Obviously, she loved ABC Warehouse. Ryan couldn't stand still long enough for a picture! He was so adorable.
 
Oh, and more brags on Ryan. He peed in the potty FOUR TIMES today! Woot! Any advice from parent's who've been there?! When will he start letting us know that he has to go?

Tuesday, January 15, 2013

Eye Doctor

Lauren had her first eye appointment today!

She actually did pretty good! She just hated the eye drops and hated having the lights shined in her eyes. But when they played the TV in hopes of getting her to look straight (which didn't work, she's not interested in TV) she danced to the music! It was SO adorable!

She has an astigmatism in both eyes but worse in the right eye. She has a light prescription need but nothing to correct "yet". The doctor emphasized that last part. She wants to see us back in 4 months (May 14th) and we'll most likely be talking early glasses at that point. We'll get to be twinsies!

I'm blind as a bat and Greg was too before he had Lasik. Girlfriend doesn't stand a chance!

The office staff was a bit under-friendly though, which I really dislike in a doctor's office. We've been in a lot of them and I don't think it's too much to ask. The student doctor at the appointment asked if Lauren was "Crawling, cruising or walking" and when I said no to all three she said, "What?! She's not crawling?!?!" It was pretty much the same tone that you would say, "She's a serial killer?!?!" So annoying! Whatevs.

Otherwise, Lauren is doing great! We've been dealing with major constipation issues that have been ongoing since we switched to formula in April. We've tried prune juice, apple juice, massage, you name it. At the suggestion of Lisa, Lauren's early intervention therapist, we tried bran cereal. Lauren loves it and it works perfectly! Her pediatrician was becoming concerned that the issues with constipation would cause issues with potty training later on so we're happy for a solution!

Speaking of potty, we're potty training Ryan! He's done pretty good so far. I'm so proud of him! He's not telling us that he has to go yet but he goes almost every time we put him on the potty. He gets to watch trains on Youtube if he goes so it's a big deal for him!

The best news of all: Greg and I booked our dream honeymoon! The kids are going to have fun with Grandma and Grandpa. We were originally planning to take a big trip in October 2013 for our 5th anniversary but realized Greg would be in school. So we're going early instead- this spring! We did a weekend away for our real honeymoon and always said we'd do a big trip. Well, we really are! We figured we have had a very busy marriage so far- nursing school and 2 kids, not to mention the stress of a prenatal Down syndrome diagnosis, heart surgery, a lengthy hospital stay, etc. Life has been busy! So we're spending 7 nights at an all-inclusive resort in Punta Cana in the Domincan Republic! Needless to say, WE ARE SO EXCITED!

[blogger is being weird and not letting me upload pictures unless it's from a website and well, aint nobody got time for that!]

Monday, January 7, 2013

Guilt

Today I feel guilty.

Lauren has been spitting up like crazy. It used to be just after bottles. But now it's after food, too. Different formula hasn't helped. Different food hasn't helped. Medication hasn't helped. It's totally exasperating.

It feels like failure on my part when she spits up an entire meal. It's so incredibly frustrating that sometimes I just want to yell at her, "STOP IT!". It's messy, to say the least. We can't keep up on laundry when we go through 6 outfits in a day. Our carpets are seemingly forever stained with formula, beans, bananas, mango, peas, you name it. Her weight gain isn't terrible, it's satisfactory for now. But for how long?

And then I found out that it's most likely just a Down syndrome thing related to low muscle tone.

I feel so guilty for being frustrated. It's the first time I've really been bothered by a "Down syndrome thing". I love her extra chromosome, I could just do without the vomit. It makes me feel terrible that something that causes me so much anxiety is because of Down syndrome.

 It's driving me crazy! We can't even to to church with 2 extra outfits packed for her and an extra shirt (at least) for me. Please send us prayers, vibes, good thoughts, anything you have for Lauren to keep her food down. Please.

Another thing about Down syndrome that surprisingly doesn't bother me?

Down's. Down's baby. "She has Down's." Even downsy.

Anything other than people first language drove me crazy when I was pregnant. It felt hurtful. Now I honestly don't care. Heck, even I get tired of always saying "Down syndrome" instead of just "Down's." It honestly doesn't even offend me a teeny tiny bit. At all. I wonder why?

When Lauren was in the ICU a nurse said, "I love Down's people." and my feathers were immediately ruffled. Until she followed it up with, "My big sister has Down's and she's my favorite person in the world! She has always been cuter than me- her baby pictures are awesome, I love her so much!" That was a huge eye opener for me! I wish I remembered her name, I would write in to the hospital about how profoundly that affected me and how much I needed to hear that Lauren could be valued even with the "wrong" language.

So while I will continue to use people first language here and in my life, I don't see myself getting offended. I choose to use it in case Lauren prefers it later. I would hate to make her feel less valued, especially as her mom. But in case anyone in real life is reading this and never knows the right way to say it- there isn't a "right way" with us!

And now for my obligatory photo dump since I suck at actually adding pictures where I want them.

Their first tea party! Ryan was actually not even mad. Right after this picture was taken Lauren barfed into a tea cup and proudly handed it to me. It was in the top 5 most disgusting moments of my life!