Going to (High) School

Hello friends and family….did you miss us? We have been a very busy family lately.

Monroe and mom went on a mini field trip this week to speak to a group of high school students about birth defects. I belong to a “Mom” group on Facebook. A teacher from Green Bay West was looking for parents of children with some sort of congenital condition to present and speak to her class. I jumped at the chance, but was also pretty nervous. Speaking to a 4K class is very different that high school….So this was certainly stepping out of my comfort zone (which I am trying to do more often these days).

Monroe was excited to go to “school” as she is a tad jealous of her sister.

I originally had jotted down 2 full pages of information, in case I needed to fall back something. And I didn’t want to forget anything important.

The funny thing is, once Roey and I stepped in front of the class, the words just started pouring out. If there is one thing we are experts on, it’s our own lives. I have learned that I would like to do this again!

* Was this genetic hereditary? (Nope)

* What caused it? (Nothing!)

* How has it made our family grow? (By leaps and bounds….seriously, and in a good way – Made us closer, made our world of connections and cool people much larger, and made us much more empathetic and understanding.)

* What challenges does my child face?

This was a tougher question for me to answer as she is small yet, but she really hasn’t had anything challenge her, per se. She just always figures it out. I did mention that we had an instance from daycare where a girl said her arm was ugly and weird. This took a lot from me not to lash back, in true momma bear fashion. I just had to remind myself that this girl was young, sheltered, and unfiltered. I told her that I thought it was pretty cool that nobody else was like her, and since then she has always been as sweet as pie. Kids can be mean, and that doesn’t always vanish with age.

Now, never speaking to high school students, I was nervous they would not be interested. Boy was I wrong. I am sure it didn’t hurt a bit with a sweet, little, pig-tailed, cutie was standing with me, but they were very engaged. I answered many questions from the class and teacher, and felt super getting our story out there.

What I really wanted to leave them with was that Monroe’s case is certainly not a tragedy….not even close. She is wonderfully and perfectly Monroe. And if that smile doesn’t get you, than nothing will.

Cheers and peace to you all.

PS: Monroe is having a 3^rd Minion-Themed birthday party soon and I will write more and share the pictures =)

What Makes You Different, Makes You Beautiful

Well hello friends – We often post updates, pictures, videos to our Facebook page  – A Little Bit of Grace – And often overlook our blog, so our apologies!! Monroe is now 2 1/2 (what the heck, I know!?), and she now calls her little arm, “my nubby”, which makes me smile – No beating around the bush here, but that’s the way we hoped she would be!

Since it is becoming nicer outside, we have once again begun frequenting the local park, and I am quite surprised somedays when our stubborn little buddy wants to do things by herself (even though I am not sure she will be able to yet) and does them! It’s not just that she can’t really grab on her with her left arm, it’s because she is only 2 =) We would much rather her be stubborn, and take those chances, than be scared to try!

We also have signed her up for a weekly Bouncin’ Bus session. This is literally a gymnastics bus for little kids, which was gutted out and replaced with a little ball pit, monkey bars, a climbing wall: http://www.bouncinbus.com/  Here is she is on the balance beam:

Roey on the Bouncin’ Bus beam

I also received the kindest message from the teacher / coach:

I just wanted to let you know how wonderful Monroe did on the bus today! She did all of the activities the other kids do (hung from high bar, handstand against wall, etc) and it was so amazing to watch her. I’m sitting there trying to figure out how I will adapt the skill for her, but before I have my mind made up she’s already there and ready to go and doing it. She shows me up!

You have a really awesome little girl. Can’t wait to watch her grow.

Seriously – wouldn’t any parent love and appreciate a message like that!?

Harper just turned 5 at the end of March, and was the Star of her 4K class recently. She was asked to bring in something special to share with her class, so she brought in her sister =) It was timely, as well, as April was Limb Loss (Awareness) month. We were able to explain Monroe’s difference, but explained that everyone is different. We all are different on the outside in ways, as well as on the inside. These are what make us unique, give us stories to share, and lessons to learn. The kids were amazing, asked many questions, and were very happy to have Monroe there (as well as the doughnuts)! Here are a few pictures from that day:

 

Finally, here are just a few pictures from life recently of the girlies. Enjoy!

Share Me:

Hi friends, family, and those we have not met yet (we can group you all into friends!) Kristen and Tony were in Mexico for a friend’s wedding late last month (May) and the girlies got to spend the week with Grandma Karen and Grandpa Donny. Here are some pictures from their adventures in Winona:

Man did we miss those little stinkers!!! It was a much needed and absolutely fantastic vacation. We stuffed ourselves with Mexican, Caribbean, and Italian fare….as well as tried all flavors of mojitos and different fu-fu drinks. If anyone needs a recommendation for an all-inclusive in Riviera Maya, check out – www.karismahotels.com/hotelsresorts/foreveryone/azulsensatorimexico

On to a different topic….As the weather is nicer and Monroe is able to play at public parts now as she is old enough, I can’t reiterate enough how important it is to let your children ASK QUESTIONS! I can’t even count the times that a curious child has asked (or started to ask) a question about Monroe and the parent shushes them or stops them. IT’S OK!!! If you yank your child away, they are going to truly think something is wrong, and people are typically afraid of what they do not understand. Nothing is wrong with Roey, she is simply a little different. But everyone is a little different – whether that be something we can see or something that we cannot.

I saw a t-shirt on the Nubability website (http://nubability.org/) that said something to the effect of “Because I don’t need an ‘extra’ hand”…super cute =)

Anyway, please feel free to reach out to us with questions or comments. We really enjoy connecting and communicating and learning.

Have a fabulous day =)

Character Flaw

Defect…birth defect….abnormality… Medical terminology can be a very flawed and broken concept.  These words appear every time we go to the doctor for a checkup or routine visit.  Not sure why but it strikes me every time.  Maybe it’s because I don’t see Monroe in that way or haven’t noticed a “defect.”  The only thing I find defected is our perspective and perception of what we consider different.   But at the end of the day we are all different in one way or another.  It’s just in how you define the word.   You see, we all walk around with Character Flaws that we hide from the world to see.  Being born with a visible difference just allows others to see your scars.  Differences can cause hatred, ignorance, or fear.

Don’t be afraid to color outside the lines.  Being “different” allows you to have a unique perspective on life.   Share it and embrace the opportunity to enlighten the world around you.  We should all be so brave to be different and break free from the mold.

“Be yourself; everyone else is already taken.” – Oscar Wilde

Tony

Easy Peasy

I have felt a little guilty, as I have not kept this up as often as I should be. The truth is, life is pretty easy right now in regards to Monroe’s difference. If people (usually kids) ask questions, it is easy to answer them as Monroe does not understand there is a difference yet – because believe me, people ask lots of questions!  But that is a wonderful thing. It is a far better thing to ask about something we do not understand, then to go along just not understanding and forming our own opinions. Asking and understanding makes the differences seem smaller and less dividing. In fact, Tony and I have grown pretty comfortable answering questions and easing minds.

As Monroe grows, I will be able to expand on her life and how she accomplishes her daily tasks. She has had no problem at all learning to sit and crawl, balancing and standing, dancing and even running a little!  She holds a bottle and a spoon with ease and can turn the pages of books at her young age. She also can carry things in her right hand and left elbow nook.

She is certainly a smarty-pants and I am really enjoying these little victories and lessons!

I will do my best to keep at this and keep updating everyone. Thank you for taking this journey with us – every comment, follower, and friend helps in ways we cannot explain or even begin to thank!

Here is a test to find out whether your mission in life is complete……..If you’re alive, it isn’t!
                 –   Richard Bach

Best Buddies

Follow Up From “Grandpa Donny”

Well, the 2013 holidays are over. But, we got to spend two quality weekends with Monroe and Harper! As I was watching the two of them play and interact, it reminded me so much of their Mommy Kristen and her sister Heidi….MY daughters! They have an incredible bond even though they live a long way apart. I can see already that Harper and Roe are going to have that same, unbreakable bond as sisters. Roe absolutely lights up when she sees Harper….her best friend, and it will always be that way. Harper is a wonderful big sis, and just loves Roe.

Wow, what a blessing!!!

A Note From Grandpa Donny

I am, as Harper Reese (Monroe’s big sis) puts it, Grampa Donny. When we first heard that Monroe was born without a hand, we, of course, were concerned about her overall health. I mean, was that all? But to be honest, I was way more concerned about the welfare of her parents……my daughter Kristen and her husband Tony. I figured that if she was only missing a hand, we could all deal with that in years to come, and be the rocks in Monroe’s life. I have pledged to be that until my life is gone for Monroe and for Harper.

As she has grown into a blossoming 13 month old, she is walking and jabbering now, and real words will soon follow. She has already adapted in so many ways to using her good right arm and her little left elbow and nubby to pick and hold things, to eat, and so many other things. It is utterly amazing to watch her. Because of her wonderful family, she is growing into a beautiful little girl with a sense of humor and a smile that would melt you heart. I firmly believe there in nothing she won’t be able to do in years to come, and I get very excited about the thought of her growing up into a beautiful woman. Honestly, I get chills just thinking about the fantastic things she will do. We have already learned so much from her.

I love you Roe, and I’ll always be there for you!!!

One Year Already!

Now THIS is true joy

Good morning world!!!!

It has been too long since I have seen you all, and since Monroe Grace has just celebrated her first birthday, I thought it was due time to write again.

Wow – what a year……Here it is by the numbers:

• 2 broken bones
• 2 hernias (and surgery to repair)
• 2 root canals  (Yes, all of these health issues were me!)
• 2 family weddings
• 3 family deaths
• and the birth of 1 amazing little buddy!!!

So as you can see, it has been a year chalk full of the highest of highs and certainly the lowest of lows.

Reflecting back on her birth day, never did I imagine this is what life would be – or really could be. I always asked how I could love another child just as much as my first. Crazy enough, and other parents can vouch, you can – and even love the first more too. As her birth day was a low and a high day for me, I can truly say that I am on a higher level now than I ever have been. I have cried more in the last year than I probably ever have, but I also have been more joy-filled.

As I am looking ahead, the only thing that brings me sadness and anxiety is fear that Monroe will not accept herself or her difference. As I can’t comment more on what the future will hold, I will just have to ride it out and continue to update you all. My motto will continue to be for my girls:

“Why fit in when you were born to stand out”? — Dr. Seuss

I’ll give you a “Happy Birthday!”

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Recap of Chicago Trip

Morning family and friends! I realized I never followed up on our family trip to Chicago. Wow was it nice to have 10 days off, no schedule, no strict plans, and to be able to be with our girls the whole time. It was very much needed to regroup, reconnect and center ourselves.

We drove down to Chi-town on Tuesday morning and immediately packed up the strollers and headed out to the Pier. It was pretty hot and sticky out that day, but we managed to stay a little cool with the breeze and the boat tour.

Tony and Harper even rode the Ferris wheel, while Monroe and I watched and ate their smoothies!

 That night we ate dinner at the Rainforest Café, and surprisingly, neither Monroe nor Harper was frightened during the “storm”. Harper had many questions for our waiter, including “who is inside the gorillas?”, and “Where is Nemo”?

 I would not say the sleep was good, as all 4 of us ended up in the King bed……but the Shedd Aquarium is AMAZING! We spent all day there. If you have children, they will LOVE this place!  Make sure to buy the complete pass, where you can attend the water show and the 4D show.

 I have got to say that not once was I aware of people staring or whispering about Monroe’s arm. I am not sure if that is because they truly didn’t notice, or if I am becoming less aware. One day last week, I was cuddling with Monroe and I had a few tears because I think I am truly past the sad stage. Of all the diseases and hardships in the world, and this is just a hand!!!  This blog and Facebook page has really helped me too.

 Tony and I are sometimes worried that we are putting ourselves too far out there, but I think that is the only way to connect and also help others in the same situation.

 On another note – I have requested brochures from the Lucky Fin Project to distribute to our local hospitals and clinics. It sure would have been nice to be offered initial support and contacts at the hospital that day, but through our experiences, we can help others.

Have a blessed day!

The girls at Shedd

On the boat tour=)

Chi town trip!

Hey everyone! We are on our way to Chicago for a few days. We took the week off to spend some time with the girls before it gets chilly out again.

We were down in Chicago a few weeks back for our first meet up with members of the limb difference community. Jen Reeves from Born Just Right scheduled and set up the get together, which began at the Children’s Museum, then a trip to Millennium Park and the Bean. That trip was more for Tony, Harper and I really, to get our foot in the door with this awesome group of people…to connect and ask questions. We were able to meet several families that we keep in contact with. Many of them have blogs and sites as well so we are able to follow their stories. It was such a cool day because Harper got to play with Jordan. We were able to meet Ryan from Living One Handed. There was also a woman who walked up to several of us, who had a limb difference herself, asking if we were part of some convention or something…hahaha! It is always nice to be around others who are like you or are in a like situation! 

On Monroe’s birth day, Tony and I felt alone, in the respect that we know no other families like ours now….the same rings true still within our group of friends and family. However we are so far from alone being part of these sorts of limb difference groups. Some that we follow, outside of Born Just Right and Living One Handed are Helping Hands Midwest, Nubability, Tony Memmel, Nick Newell…..so many to look up to and learn from.

Well, we will post updates and pictures from our trip….stay tuned!