Welcome to my blog!

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

Tuesday, August 27, 2013

Physical Therapy Update

Greg took Lo to PT today since I was (am) sick. We have been having lengthy talks about what our PT plans are for her during this school year.

She will get one home visit per week plus the option for a group visit at school ( we don't usually go due to siblings not being allowed and its the same day as her home visit. She hates it so I don't like to bombard her with that much therapy on one day). We're hoping to add speech this year as well. This all goes from September through May and follows the school calendar.

We struggled with whether or not private PT was necessary along side EI this year. But since she's made HUGE strides since we began private PT we decided to continue. I'm talking crawling, kneeling, bearing weight on her legs (when she feels like it) pulling herself to standing. Big developments! 

So we'll be schlepping the 45-60 minute drive to the hospital every other week for the time being. Weekly was way too much for us to manage. Add in Ryan being in preschool twice a week, me working full time...way too much. Plus we need to have time to just relax, play and be a family. 

I am so incredibly thankful that we have the option for private therapy due to Lauren's secondary insurance. I'm hoping she makes great strides this year! My personal goal for her is still walking by age 3. Lets see if Little miss agrees :)

Thursday, August 22, 2013

Just some pictures

I got a couple of super cute pictures of the kids so I need to post them :)
I am one lucky gal!


Wednesday, August 21, 2013

Blog Hop! Truth, Tip, Photo

One truth about Down syndrome and how it pertains to our lives.
Lauren is delayed. Sounds obvious, right? But it's something I was in denial about for a long time. I'm not particularly sad about it, it's just part of who she is. Another truth is that she is so loving! I known its a stereotype, but it's so true for her. She's never met a stranger and has fallen in love with every dog she's ever seen.

Here's a tip.
Just let your child be. I haven't looked at a milestone chart since Lauren was born. She's 18 months old and army crawling. I know that's not in the little box on the milestone chart for what kids "should" be doing at her age. Forget about what your kid "should be doing" and rejoice in what they ARE doing!

Photo

Monday, August 19, 2013

Unaware

It's hard for me to write this, simply because I fear the backlash. But this is a post I need to write for me. I want to be able to look back and see how I was feeling and where my mind was.

The differences in Lauren compared to Ryan at this age and other kids her age are becoming so apparent. She just seems...blissfully unaware of her surroundings. I say blissfully because she's very obviously happy. But she just seems so unaware.

It's like she wants to be an active participant in her surroundings but she can't. Her vision and hearing have checked out just fine, though we do see them both again this fall. Sometimes she rocks back and forth and shouts, which is adorable and yet obvious stimming behavior. I don't think she has autism. I think it's more characteristic of Down syndrome.

I've been thinking about what her future looks like in the way of education an I know that she will determine her own path. I am by no means intending to place limits on her, but already at the age of 18 months she seems so far behind. 

It's not the lack of speech, Ryan didn't speak at this age. She even signs a few words, which I think is amazing! I couldn't be more proud. It's not that she doesn't interact with us, because she certainly does. She is so lively and seems to feel joy on a level most of us are unable to reach. I can't put my finger on exactly what is different, it just is.

We saw a family out yesterday with a little girl who was about 8-10 months old. She was just so much different than Lauren. She was aware and interacting on a level Lauren has not yet reached. I honestly expected to be sad or disappointed when I made the inevitable comparison to Lauren. But I wasn't. I noticed it in a way you notice another person has a different skin color- it doesn't affect anything, it's just different. I wasn't sad or upset or disappointed. Should I be? It was almost unsettling.

I want Lauren to have dreams and hopes. I want her to learn a good work ethic and try hard to gain the full appreciation for success. I want her to shoot for the moon. But at what point do I guard her heart? When do I steer her towards realistic, attainable goals? When do I steer myself towards realistic goals for her? I love her so much it hurts sometimes, like a deep pressing ache in my chest that seems to reach my very soul.

I look at it this way. To trivialize it: I'm 5'3" on my tallest day. What if I had wanted nothing more than to play for the WNBA? My parents probably would've encouraged my (hypothetical and nonexistent) love of basketball but somehow made in known that that was not a realistic goal to set for myself.

It's an aspect of parenting I'm sure I need to grow into. I've only been on this journey for three and a half years. Only eighteen months with Lauren. I'm hoping that in time I will gain some of this knowledge through experiences, support, advice and prayer. It's kind of a scary road to travel.




Sunday, August 18, 2013

Aunt Raegan got married!

My sister got married yesterday!! It was SO much fun!!
The beautiful bride and I

Family picture! I just love us :) I'm pretty obsessed with Ryan's tuxedo t-shirt. My amazing sister said she didn't care what he wore as long as he was comfortable and in the wedding!

Have you ever seen anything cuter?! Me either.

Me!

Back of the dress. And 2 of my tattoos :)


My BFF and I

Another one of my BFF and I :) If only my twin was in these, she completes the trio!

We had a blast! Ryan was so, so good as a ring bearer and did great in the ceremony. He fell into a (shallow) fountain at the reception while fooling around with his Grandpa, LOL! Luckily we live 10 minutes from the reception hall, Greg went and grabbed him new clothes!







Thursday, August 15, 2013

Ever have one of those days?

Do you ever have one of those days? You know, the day where you ask yourself "Why did I have children?!"

Today is one of those days. And I have no idea why! Ryan is being SO funny and adorable. He did barf at the mall last night which is low on the list of experiences I care to repeat.

Lauren is in diva mode today. Throwing everything on the floor, scratching me, yelling for no reason. She's now officially 18 months old so I am certainly not surprised.

I woke up with Ryan at 3am and 7am, when I finally turned on a movie for him and went back to sleep. He let me sleep until 10:30 after that, so my disposition should be much sunnier today!

Instead, I find myself hiding in the kitchen, staring at the total mess I've made in my attempt to make pancakes "just like grandmas". My floor is littered with pancakes refuse and blueberries from the container I dropped on the floor. Why am I so tired? Oh yeah, because its my first day off and I'm supposed to magically morph into a day person instead of the night owl midnight shift has created.

[Insert uplifting ending here, I don't have it in me.]





Thursday, August 8, 2013

Toddlerhood

I think I have to call her a toddler now. She'll be 18 months old on the 12th. Holy cow! I still think this is impossible.

She's in a pinching mood lately. She lots to find any skin at all on me and pinch or scratch me as soon as I pick her up. I yell "ouch!!" And tell her no. Then put her down. Rinse and repeat.

It's not working!! I'd love any advice. It hurts and makes me sad.

She had the best physical therapy session ever this week! She stood up a ton and started practicing little steps forward while heavily supported. Go Lauren!! She also demanded that we blow bubbles (it's our "trick" to get her to cooperate). She demanded more by yelling "Bubble!" Smart cookie.

We also met a Ds mom while at the hospital. Her son is now 24! She was so excited to meet Lauren, who did her cute little pageant wave and said hi to anyone who looked at her :)

Toddlers...they're so sweet when they're sleeping!

Saturday, August 3, 2013

Knowledge is power

When we were pregnant with Ryan they saw a bright spot on his heart and mentioned a risk for Down syndrome. We had a fetal echo to get a closer look at his heart and they really didn't see anything, so the concern was gone.

We were terrified. A baby with Down syndrome? What would we do with a baby with Down syndrome? We were incredibly relieved when they told us not to worry. We celebrated. And Ryan is typical.

Fast forward 2 years. We go for our anatomy scan and they saw several markers for Down syndrome. We had an amnio. They confirmed that our baby girl would be born with Down syndrome.

Again, we were terrified. So we pored over every article, read tons of books, starting reading blogs, anything we could do to arm ourselves with knowledge. And you know what? Some of that fear started to dissipate. The more we learned the less scared we were.

Five months after that appointment, Lauren Hope was born. Love replaced terror. Hope replaced anger. We kept learning.

Even now, just 18 months after Lauren was born, I can hardly remember being so scared. Down syndrome? Psh. The heart issues and complications Lauren had gave us a whole new fear. Open heart surgery. On my six week old daughter. Now that is scary.

My knowledge of Down syndrome grows daily. But the knowledge I do have is like a coating of armor against the fear of the unknown. Every day it gets just a little stronger. I used to be so scared of the thought of a child that didn't walk until age two. Now my hope is that she can walk into preschool at age 3. And the majority of the time I'm not even sad about it! I do sometimes fear for the things Lauren won't be able to do. But I'm comforted by knowing all the amazing things she can do.

It is what it is. And I don't mean to sound like I'm merely resigned to the fate of a kid with a disability. I enjoy it. I relish in her accomplishments in a way that just simply would not be if she were typical. Daily celebrations are commonplace in our home.

For me, knowing what to expect takes away so much fear. This is the reason we decided to have an amniocentesis to confirm Lauren's diagnosis at 18 weeks pregnant. Sometimes I can barely believe I consented to such a risky procedure, but knowing replaced the fear for me. The day of Lauren's birth I was afraid that she'd be taken to the NICU right away but I was not afraid of her. This is why I continually try to immerse myself in articles, blogs, books, news stories, etc. relating to the Down syndrome community. This is why I email my state legislation about the ABLE Act.

The knowledge I currently posses is like second nature for me now. And my knowledge grows daily. I often forget that not everybody in the world knows very much about Down syndrome. Instead of getting angry at poor language choices, ignorance and staring, I try to remember that not everyone is as lucky as we are. We don't just wonder about people with Down syndrome. We get to love a person with Down syndrome! 

If you're reading this and you don't have the honor of loving a person with Down syndrome, you can still learn! The best way to learn- ASK! I always prefer questions to staring. I am always more than willing to share my (however limited) knowledge about Down syndrome with people. I do know plenty about Lauren and she's more important anyways :) If you see us in public or on Facebook or read this blog- ask away.

Knowledge is power. 


Thursday, August 1, 2013

It's finally summer

We have had some wacky weather here in Michigan. Like, jeans and sweatshirt weather in July. Well, finally on August first, it's hot again! I actually am not a fan of hot weather but Ryan sure does enjoy it.

They've been like this all afternoon! Both totally soaked! It turns out Maizy is a water-lover and has enjoyed the sprinkler just as much as Ryan. So fun!