Saturday, September 24, 2016

Love the ones your with

Life is short... the dishes will be there, the house will still be waiting to be cleaned, the toilets- they can wait too... Let the laundry pile up, let the rooms be messy, let cleaning wait and love the ones you care most about. Really love them. Let them feel the love. 

A few days ago, something happened. It's private and I intend to keep it that way. It scared me, my life flashed before my eyes, things can change in an instant. Often times, we get so caught up in the every day things, homework, dishes, dinner, baths... that we forget that the people that we love the most are waiting for us, wanting and needing our attention. Cherish those moments, turn them into memories... When all is said and done, you will remember the memories the most. I promise. 

This wake up call has made me think. I've kissed my kids more than ever. I've actually stopped in the hallway to kiss my husband. I stopped cleaning the kitchen to wrap my arms around his body and really feel it in my arms. I'll be the first to admit, that I don't do those things as often as I should. 

My husband gets pushed to the way side while I hug our kids, read to them, do homework, make them breakfast for the 3rd time in one morning. Today, I held him extra tight. I even told my beautiful babies that I loved him first, long before they ever came along. I told him that the love we created allowed us to create them. That I fell more in love with their daddy with each and every day. That their births allowed me to fall in love with him all over again. 

You see, it's my husband that gets the brunt of my bad day. He's the one I adore. He takes my shit when I'm having a bad day. He's kind and gentle, yet hardworking and stubborn. It's he that consoles me when I'm sad, that tells me to back off the cliff when I'm ready to jump. It's he that wraps his arms around me and holds me when I cry. It's he that takes the time to listen to my excitement, my fears, my happiness, my craziness, my madness, my silliness. He loves me in a way that I know no one else could. 

Take it from me, love the ones you love the most. Really love them, love them in a way that no one else if capable of loving them. Love your babies, love your husband, call your mom, pick up your friendships, take time to do something that makes you happy. Love your life... please, don't let it slip away without loving it. 

Thursday, September 22, 2016

Class talk

Two weeks ago I went to talk to Bella's class about her hand on her request. That's kind of how we've worked it every year. She tells me IF she wants me to come talk and then I reach out to her teacher when she says something. It turns out that the teacher had a super cool activity planned so she thought my talk would fit right in, turns out, I also don't teach on Fridays so it was perfect timing. It also happened that I received a text from a classmate's mom saying "ask Bella about Billy" *name changed to protect privacy*... so basically all the stars aligned for it to be perfect timing.

This year we talked about some of the same things: She was born that way, I found out when I was pregnant, she can do everything you can, she does some things that you do but just differently. She has to TRY things even if she thinks she can't. Their class has a saying "No I can't, only I'll try". This fit in well with my chat. I explained that sometimes she may do things different and get the same result. One example that we used was tying her shoes or cutting with scissors.


This year, I changed a few things. I added in words that make us feel good, that lift us up and make us feel happy. Those words could be friendly, kind, warm, happy, caring... I also added in words that make us feel sad or are hurtful. Those words could be creepy, weird or stupid. I explained that it's much nicer if we could try to lift up our friends and make them feel good. That kindness comes full circle, if you are kind, then others want to be kind to you. I asked them to come up with words people used to describe them that make them feel good. I heard words like helpful, funny, happy, athletic, crafty... They were THRILLED to share those words that made them feel special.


We talked about how some differences we can see, like a missing hand. We also talked about differences we can't see like diabetes. We talked about celebrating each of our differences and what makes us each special. We also talked about how each of us has physical differences that we can see, such as hair color, eye color, freckles, moles... and maybe we had differences on the inside that no one could see or knew about. One child even felt comfortable sharing that she was diabetic and had to get her blood sugar checked.


This was the FIRST time I took notes with me to talk about Bella's limb difference. It's EASY to get off track with a bunch of squirrely second graders at the end of a busy school day. I'm happy with the results. I'm also happy to report that Billy has been much nicer since our chat!

Tuesday, September 20, 2016

Myoelectric testing

We've been waiting...and waiting...and waiting for Hanger to tell us that they received insurance approval for a prosthetic. Our pediatrician already wrote a prescription for it. Who knew you'd need a prescription? Crazy but true... Turns out Hanger never submitted it to insurance at all. Instead they went ahead and retrieved the myoelectric (myo) tester from another location to be sure that Bella's muscles in her left forearm work properly to control a myo. This has been over a month long process just to get the tester.

(This is an image from the internet that shows what a myo could look like for someone like Bella)


Yesterday, we went into Hanger to do the testing. Turns out, Bella's muscles are on fire! She was able to move her wrist in the ways that our prosthetist asked in order to trigger her muscles. Demonstrating that these muscles triggered means that Bella would be able to control a myo. She was super excited! She loved watching the tester lights go up and down on the monitor. She loved being able to "see" her muscles do something on a machine. It was a really sweet moment watching the excitement in her eyes and her face light up.

Our prosthetist said "She likely wouldn't need much occupational therapy if you practiced at home. All of her muscles are intact and fire properly. She's able to control them to trigger the muscles when asked. That means that she could open and close a hand on the prosthesis." Watching her face was like watching fire works on the fourth of July. She was thrilled to hear that she could make the muscles work in the way that she needed to to control a prosthetic myoelectric limb. I was excited to watch her continue to trigger the machine and watch her laugh with delight.

It was a short 15 minute appointment. An appointment that could change things for her and our family. We've always said that we would support our children. This was Bella's idea. She really wanted to try a prosthetic. She says that she thinks it will make some things easier. I would agree with her... I'll also be the first to say that it'll make some things harder too. Things she used to doing with her hand the way that it is. Things like playing with certain toys, tying shoes, doing pony tails, cutting things with scissors, eating... she'll have to do things differently. Kids will be curious in a different way.

Now, we wait...and wait...and wait... for Hanger to talk to insurance and our pediatrician to talk to insurance. For insurance to deny a prosthetic and then to appeal... that's how this works. So for now, we wait.

Thursday, September 1, 2016

Oh Apple...

It's true that I love Apple products, they are so user friendly... WHEN they work! My computer isn't currently recognizing my phone which creates some issues when trying to upload photos. In the meantime, a LOT has been going on! Stay tuned for a TON of blog updates!

Sunday, August 21, 2016

Adventure Day

I don't even know where to begin with Adventure Day... So I'll keep the words to a minimum and share a TON of pictures. So far, only the Maine Camp No Limits has this type of activity. It's all about sponsorships and availability of a business of this sort to do an activity of this nature. If you know a business that would be interested in sponsoring something like this at Camp No Limits, please reach out to me and I'll put you in contact with the right people.

The two Bella's






 

(Having your tongue out helps you run farther and faster)                Peyton and Bella




Who will take who down? 

Or will you take yourself down? This might be my favorite video from all of camp! 


Luca even took a try at the rock wall!                        And Grayson too! Bella refused ;) 



Until next time... 

Saturday, August 20, 2016

The Camp No Limits Maine variety

This year, our Maine vacation ended with five glorious days at Pine Tree Camp in Rome, Maine. It was off the beaten path a little bit and secluded from all of reality. Just what we needed at the end of an action packed trip! We were in the cabins because God knows that no one else wants to be tortured  hang out with our three kids 24 hours a day. We pulled in to find the Camp No Limits RV!! How excited were the kids to discover this? They thought it was super cool. Bella even asked if we could put the sign on our travel trailer. The kid doesn't love camp if you can't tell!


The camp location sits RIGHT on the water. Outside of our room you could hear the water. We even had a little patio that Ryan and I enjoyed at night. All of the camp activities take place in a big common area that has an amazing view of the waterfront as well.
(Right outside of our window)
Camp No Limits has an "itinerary" each day that guides you through the activities. You can chose to be involved in as much or as little as you desire. We tend to embrace everything to the max and do as much as everyone can handle. Sometimes that means skipping naps for the boys and sometimes that means staying up WAY past bedtime. However, the beauty of it is that you can head back and take a nap and then join in when you wake up. Or if you are Luca, you can climb into Mama's Toddler Tula and take a snooze while everyone else enjoys whats going on. 
This year I offered to be the CNL nurse. It allowed me to interact with SO many campers that I may not have interacted with otherwise. Many times, we get caught up in our "upper limb" groups doing things and miss out on what all of the "lower limb" campers are doing. Part of being at camp for me means watching everyone. In Florida, I remember seeing someone running for the very first time! I cried! Although sometimes, you get so involved in what your group is doing that you miss those moments of other campers. Being the nurse allowed me to see some of those moments, along with a few concussions, a stubbed toe, sprained wrist, bloody knee, sore throat, coughs, sunburn, sore feet... you know the usual camp stuff. 
There's also free time to do arts and crafts. Bella sucked Keegan right into that on day one! Bella LOVES crafting and creating so this was right up her alley. Here they were making name tags. The nice thing about name tags is that you wear them and then people get to know you faster. 
One of the super fun activities this year was the color wars. You are placed on a team (GO ORANGE TEAM!) and then you compete with the other teams for the GOLDEN chicken and the title of the color war champions... yeah we came in last but we aren't sore losers. Everyone on the team gets the chance to participate in the team challenges. It was a great team building activity and an awesome way to try new things. Grayson did a great job of sucking skittles on the end of a straw. His goal was to get them from the table to the cup. Who knew he could rock this? He's also rocking his superhero orange team shirt!

We had action packed days from morning to night! I'll share Adventure Day in another post, stay tuned! 


Thursday, August 18, 2016

Why cousins make the best friends

We are lucky to have Ryan's siblings living close by. We are also lucky that we all had kids near the same time. There were EIGHT kids in 3 1/2 years, four boys and four girls... could it get much better than that? Pretty crazy but mad fun and lots of love. It's always action packed when everyone is together and I wouldn't trade it for the world.

This week, two of the girl cousins stayed the night. They are six and seven. While eating dinner they were talking about going to State Fair. They talked about all of the rides they rode, the stuff they ate and the things they saw. Their conversations are so funny. Bella, L and S sound so grown up when they talk now!

"Hey we saw a kid with a hand just like you at State Fair! He was like older than you, like 8 or 9" S

"No for sure he was 9"- L

"Ok he was probably 9"- S

"Cool, I saw a guy with two prosthetic legs"- Bella

"Yeah that's awesome!"- L

What I love about this is that it's totally normal for all of them. They are accepting of others differences. They look at Bella no different. They hold both of her hands. It's a non-issue. I love that because of her, they pay attention to others that are like her. I love that they are aware that it's no big deal. Cousins make the best friends!