Something Amazing

This weekend I witnessed something amazing.  Something so novel to me, that had I not already been on my knees, it would have brought me there...

 

     We attended a family member’s 5^th birthday party at Pump it Up in Bethesda, MD.  What a rush one can get from that place!  We arrived early, per the information card, to sign waivers for the kids and sign-in all the adults in our party, including Ben, Kelly (even though she totally acted like a kid in the back seat on the 2 hour drive) & myself.  Before we knew it, all of Kate’s friends had arrived and it was time to head into the first room of moon bounce heaven.  By the time I had a moment to orient myself, park the stroller and slip into a pair of socks, Hannah was gone.  Ben saw the panic in my eyes and informed me that she had a green glow necklace on.  Pump it Up gets a thumbs up for marking each child in a different color glow necklace for easy child identification!!  Ben and I are in full happy mommy and daddy mode, watching our 3 year old bounce around with approximately 10 other kids in what I would basically refer to as, a child version of a padded room.  Hannah and Kelly decided to test out the two obstacle bouncies in the corner of the room that no other children had discovered, yet.  As Kelly and Hannah disappear through the arch opening, Natalie starts kicking her feet and doing her “put me down” whine, so I obliged.  She TOOK OFF for the entrance to the obstacle bouncy!  I let her climb up and down the padded entrance.  It was a giant padded, wavy bolster (imagine a wide padded, wavy slide) that I helped her climb up (she only required my hands in place to give her feet something to push off of).  Once at the top of the bolster, I would have her turn around and slide down it.  She was quite content with this activity, but as other children discovered the hidden moon bounce, the entrance became crowded so we moved along.  Following Kelly & Hannah as they headed for the giant slide Natalie had the same reaction and this bouncy had the same bolster at the entrance, so I let her climb it.  Only this time, sliding down it was NOT an option…she wanted to keep going!!  I let her crawl up to the stairs and that’s where I stopped her.  It was a narrow area and kids were getting anxious and shove-y.  We continued this pattern a few more times before she became really pissed that I wouldn’t allow her to climb the stairs.  Kelly offered to take her up and bring her down the slide.  At first I was hesitant, the PIU staff were watching this bounce and I didn’t want to get kicked out for breaking any rules.  Upon talking to the birthday girls parents, apparently no one under 2 is supposed to be participating.  Screw it!  Natalie aged 6months in 6 seconds.   I handed her off to Kelly and stepped back to watch Natalie’s reaction as she came down the slide.   Kelly lingered at the top of the slide, allowing other kids to go ahead of her.  With each passing child, I could see Natalie’s uncertainty subside.  By the time Kelly and Natalie came down the slide, Natalie had a huge smile…she LOVED IT!  Next up, the circular moon bounce and this time I got in!  Hannah, Kelly, myself and Natalie had the whole moon bounce to ourselves.  I ran around with Natalie in my arms and she responded with the biggest, deepest laugh I’ve ever heard out of her…a full on belly laugh!  Then I set her down near the netting where Ben was standing, watching us.  She looked around hesitantly as she watched a few kids clamber in, but once she adjusted to the bouncing, she turned over onto her belly and took off as fast as she could with her army crawl, chasing after the other children.  She was in her glory, giggling and cracking herself up so hard, she would have to stop b/c she didn’t have the core strength to laugh and hold herself up at the same time.  It was at this moment, as I was kneeling next to her, my eyes well up with tears.  My heart had become so over-joyed that it spilled over into my belly, giving me butterflies.  I’ve never been so delighted to see Natalie interact with children older than her…and she didn’t even have to be walking in order attain this experience.  I just watched in awe of this, 11^th percentile for height, little girl with low tone, bouncing around in a giant moon bounce having the time of her life!  On several occasions she took a knee or elbow to the back or head, yet she kept on truckin’.  I have a feeling she might end up being our tom-boy, that Ben and I so strongly desired…perhaps our little sports diva!?! 

We’ll just have to wait and see!

As we drove home that evening with a car full of 5 sleepy Rohe’s (yeah- Kelly counts as a Rohe), 2 bathroom breaks, and a bout of traffic…my feelings of utter elation never waivered.  I can say with full certainty, it was hands down one of the best days in recent Rohe family adventuresJ

Sorry- No pics from our PIU experience...but here's a cute one of Natalie!!

Good Life

You know the song Good Life by One Republic…

  It is so applicable to my life.  Every time I hear it, I melt.  I truly have a Good Life!

Woke up in London yesterday

Found myself in the city near Piccadilly

Don't really know how I got here

I got some pictures on my phone

With this verse I instantly think of Welcome to Holland by Emily Perl Kingsley

New names and numbers that I don't know

So true!  Majority of the names and numbers stored in my contacts are relatively new.  Granted I know them now.  Less than a year ago, I knew none of them.

Address to places like Abbey Road

Day turns to night, night turns to whatever we want

We're young enough to say

Oh, this has gotta be the good life

This has gotta be the good life

This could really be a good life, good life

Gotta be the Good Life?  Nope. This IS the Good Life!

I say, "Oh, got this feeling that you can't fight"

Like this city is on fire tonight

This could really be a good life, a good, good life

To my friends in New York, I say hello

My friends in L.A. they don't know

Where I've been for the past few years or so

Paris to China to Colorado

To some of my friends I do say hello.  To the others, they are the ones in L.A.; they don’t know my new life.

Sometimes there's airplanes I can' t jump out

There was a point in the past 16mos that I could completely visualize myself on the edge of the airplane door, ready to jump out.

Sometimes there's bullshit that don't work now

There is stuff that doesn’t work now {relationships, techniques, systems, etc} and bullshit is exactly what it is.  

We are God of stories, but please tell me

What there is to complain about?

When you're happy like a fool, let it take you over

When everything is out you gotta take it in

What is there to complain about?  Nothing, I have a good life.  I occasionally need this song to shift my thought process, make me happy, and allow it to take over!

Hopelessly

I feel like there might be something that I'll miss

I do deal with a constant feeling that there is something that I’ll miss ~in regards to Natalie~ whether it’s a service, conference, seminar or class that I need to sign up for or enroll her in.  It’s a constant.  It will never go away. As she progresses and reaches milestones, as her parent, that means there's another step to be taken.

Hopelessly

I feel like the window closes oh so quick

This symbolizes my constant awareness that I need to be one step ahead.   If she misses something, if that window of closes to quickly; it’s my fault for not being there sooner to scoop up that opportunity. I am the only one to blame.

Hopelessly

I'm taking a mental picture of you now

My mental picture of Natalie is a side profile of her face.  I pray that it will be etched in my memory, forever.

'Cause hopelessly

The hope is we have so much to feel good about

I truly know that I have so much to feel good about!!

Oh, this has gotta be the good life

This has gotta be the good life

This could really be a good life, good life

I say, "Oh, got this feeling that you can't fight"

Like this city is on fire tonight

This could really be a good life, a good, good life

Oh yeah, good, good life, good life, oh, this is

This IS the Good Life!

     

Empathy, please.

 Sympathy~

fact or power of sharing the feelings of another, especially in sorrow or trouble; fellow feeling, compassion, or commiseration.

Pity~

sympathetic or kindly sorrow evoked by the suffering, distress, or misfortune of another, often leading one to give relief or aid or to show mercy

Empathy~

intellectual identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another.

I don’t want sympathy.

I don’t want pity. 

I want Empathy. 

• Try to understand what I am going through.   
• I have embraced Natalie’s diagnosis and I have hope that you can, too. 
• I need you to understand, I am going through a challenging time. 
• I am busy.
• I am overwhelmed. 
• I often have too much on my plate. 
• I am immersing myself in so much. 
• Striving my best to make positive impacts in my families’ future and learning new and better ways to communicate with my daughters. 
• I’m not the Peg Bundy of stay-at-home moms. 
• I’m a pro-bono Occupational Therapy Assistant.
• I bust my ass day-in and day-out. 
• I ask that you have respect for me and my family and how far we have come in a little over one year. 
• I will be the first to admit, it wasn’t easy.  
• Understand that the road that lies ahead of us will be challenging and full of unexpected bumps and turns. 

This will never be an easy journey, but I am determined to make it as fun as possible!

Hooray for milestones!!

     Today was a BIG day in the Rohe household!!  We had to move Natalie’s mattress down a knotch from the infant setting {ok, I’ll admit…Ben did the crib shift!  I bathed the girls}.  She’s recently learned the proper way to go from prone into a sitting position.  Notice I said proper.  She’s notorious for using what I like to call her illegal moves.  Home girl will do a full on split, practically dislocating her hips, to get into and out of a sitting position.  She must be fairly flexible because the team at the Down syndrome Clinic, at A.I., have exclaimed “Wow, she is very flexible!”  They see children with Down syndrome ALL DAY and they are telling me that my child is flexible?!? 

   Anywoo, back to the point of my story.  We put Natalie in a halo every time she goes to bed and she is so small that she still wears a size 6 to 12 months. 

The benefit to the smaller size is that she can’t do the leg split, therefore she is (err, was) unable to get into a sitting position.  We’ve been working, HARD, on the proper way to get into and out of a sitting position; going over her hip, using her hands and arms to support her weight.  I guess it finally clicked for her and she is consistently & independently using proper techniques to get into a seated position.  That my friends, is a HUGE milestone achieved by my awesome girl, Natalie.  

Forever and a Day; Brain Dump

It's official, I've signed up for my first 5k. I can't even run to my mailbox!  I'm pretty sure that makes me insane!

My mom gave Hannah a monkey tent for her 3rd birthday.  Her friend Terri, who happens to be raising her 3 year old granddaughter- Jordan, has one at their house.  When Hannah attended Jordan's birthday party last summer, she fell in love with Jordan's monkey tent.   Well, what does a doting grandmother do?   Yup, you guessed it! My mom set out on a mission to find that exact tent, and Hannah received it at her 3rd birthday party.   That evening, after the kids were in bed, Ben and I were cleaning up the aftermath.  I was tackling all the presents and seeing as it was occupying the better portion of our living room, I decided to fold up the monkey tent.  Twenty minutes later I found myself sobbing into the directions of said tent.  I iMessgage'd my mom...

Me: "No wonder Terry didn't have the monkey tent closed up for Jordan's party. This thing is a pain in the ass to figure out!" 

Mom: "she never closes the tent"  

Me: "Gee, I wonder why. It has 13- yes, you read that correctly- THIRTEEN steps to close it up!". 





This week i took the girls on a supermarket sweep through Bj's and by the time we arrived home and put away groceries it was past lunchtime and I needed to act fast in hopes of avoiding meltdowns due to hunger.  I heated up my pizza that was leftover from the other night.  I sat down with the girls at the kitchen table and handed out the pizza.  Natalie would only take a bite of the pizza if I took a bite from the slice first.  I continued to offer her small pieces ripped off the slice I was eating. When she finished her little bite,  I ripped off a new piece for her and she proceeds to snatch the slice of pizza from my hand and leaves me with the little torn off piece!  Growth spurt perhaps? 


The other day, possibly the warmest day of the week, Hannah was running around the house singing Jingle Bells in a highly energetic fashion. She reminded me of Molly Shannon's character from Santa clause 2...


I never understood when my friends said to me "I'm not allowed to drive my husbands car" or they have 'his' and 'her' cars and they don't share. We don't have 'my car' and 'Ben's car'. It's 'our cars'. They are both in our names and we share. Back when we were DINKS (Double Income No Kids), we were fortunate enough to have 3 cars between the two of us. It was my first car, an accord, and his truck.  They were the vehicles we came into our relationship with, so they were sort of "mine" and "his", but we still drove each others vehicle.  On my 26th birthday we purchased our luxury vehicle, an Acura TL.  I loved that car (I even cried when we traded it in)!  We typically only drove the TL on the weekends or on date nights and occasionally we took turns taking it to work.  I remember one time Ben took it to work and he and his co-workers  went out for lunch.  I have no idea why, but i flipped my shit...i was super upset.  When I look back I realize how ridiculous my behavior was; I guess I was upset that he had people in the car and I would now have to vacuum and wipe it down.  Fast forward to present day,  we refer to our cars as "the expo" and "the van".  The other day the girls and I were taking the expo to CleanPRO for a bath. I informed and reminded Hannah all morning that "daddy is taking the van to work today". Apparently it never sunk in b/c every time we were in the truck, Hannah kept repeating "daddy took mommy's van to work. When we getting van back?  This is daddy's truck but mommy is driving it". It cracked me up that it was beyond her comprehension that I was driving "daddy's car" and daddy was driving "mommy's car".   Quite frankly the best part of this day was when the girls and I were headed out to the Expedition.  Hannah walked up to the passenger side back door, knocked on it and said "open please"...nothing happened. Hannah: "MOMMY!!  Daddy's doors are NOT magic like yours!". 

Hannah Turns the BIG Oh-3!!

Sign Aunt Kelly painted for Hannah.

                               

Hannah’s 3^rd birthday came and went.  It was an amazing day!  It started off with Ben, myself and the dogs (balloons tied around their waists) piling into her room singing “Happy Birthday”…which was immediately followed up by Hannah saying “ok, great.  Can we have cake now?”

The dogs were less than
thrilled about their duties
 as balloon weights!

                                Hannah got to see the decorations Aunt Kelly put up. 

Hannah's holding a special tiara
Aunt Kelly gave her to wear.

Auntie Kelly forgot how to spell;) 

 After Hannah inspected her decorations, she received a phone call from Mickey- her face LIT UP!  I think she even blushed. 

   Next up, A.I. duPont Hospital.  Don't let that alarm you!  It was just for Natalie's weekly PT session!!  See, last year Natalie had been in the hospital for four weeks straight and we ended up celebrating Hannah’s 2nd birthday IN the hospital…as in, a celebration IN Natalie’s hospital room.  Memories that will last a lifetime. 

April 10, 2011

April 10, 2011

April 10, 2011

                                                   

Today we were fortunate enough to visit AI, for Natalie’s therapy.  I gave Natalie's Physical Therapist a heads up that Hannah would be attending today's session, so we steered clear of the gym and opted for a private room to complete the 1 hour therapy session.  Hannah enjoyed climbing in and out of the ball pit and sifting through the closet for every puzzle. 

                                                                            

    With all the excitement from ball pit therapy, it was time to head home and put the girls down for a nap.  Hannah requested I sing "Happy Birthday" to her instead of "Hush Little Baby".  I made the best of nap-time...I decorated cupcakes!!

                                             


  That evening, we celebrated with family that wouldn’t be able to attend her party on Saturday.  Hannah truly enjoyed herself.  She was showered with love and LOTS of gifts. 

                                                     
Now it came time for cake and ice cream...it's what Hannah waited all day to have!!

                                                     
I lit Hannah's candles and we sang "Happy Birthday".  Before she had a chance to make a wish and blow out her candles, Cousin Kyle yelled "FIRE!!", hopped off the sofa and blew out the candles.  

H-I--L-A-R-I-O-U-S!!

                                           

        We relit so Hannah could blow out her candles on her own...

                                                  
In the end, we had relit the candles 4 times so Hannah & Kyle could take turns blowing out the candles and ended with a joint effort...

                                              

                                             FINALLY!!!

                         

We wrapped up the evening with a video from Hannah’s favorite mouse, Mickey.

                                                   

Feeling Blah

Just recently I was feeling blah about my blog. I know I have followers but I kept wondering, "Who really reads it?  Am I really making an impact?  I would love to know that my words are inspiring." And with that thought a message popped up in my inbox.

       A friend recently reached out to me, her son has been diagnosed with Autism. I commended her for even discussing it through email.  It had only been one week since his diagnosis and she had already found support groups and other moms to talk too. My first thought was "already?!?" I mean, seriously, she has to be one strong woman to have already reached out to other moms and found a support group.

      She offered kind words saying “I draw strength from you when reading your blog and seeing all the love and support you give your amazing kids.” and with that, my blah feeling disappeared.  My friend who reached out for help and support ended up helping and supporting me.  She inspired me to work on posts that have been sitting the draft department. And she didn’t even know it…until now.  J

So stay tuned, I’m hoping to have a few new blog posts out in the near future!!