Finding Joy

Does anyone else follow Finding Joy on Facebook? On June 18th she wrote this:

I don't want to rush through life anymore.

I realized I was a rusher several months ago. It was when I was drying my hair and I had this moment where I saw that I was racing through it. Getting agitated it took too long. And I stepped back and thought about how I had nowhere to go that day and no deadlines and yet there I was rushing.

I have taught my rushing culture to my kids too.

Sometimes in the mornings I'll be in a frenzy racing around and thinking about what to do next and totally missing out in the now. I'll lose patience for shoe tying or missing bags or being late for a line that I would end up sitting in no matter what.

So several months ago I decided to become aware of my rushing. And to catch myself in those moments and to actually take a big breath and to remind myself that rushing changes nothing.

Rushing just made me anxious.

So now, now I try to slow my pace. Being aware of the time but also my pulse. 

If we race through life too fast or looking ahead too much we might just miss today.

And today, my friends, is worth not rushing through.

-Rachel

If you don't typically follow her or read her posts, do it. Do it now, run over there and follow and like her page. She inspires me every day to be a better me, to take care of me too, to not fall into the Pinterest trap, to settle down, to live and let love takeover. 

This post rang oh so true. I'm such a rusher, which makes me a stressor. My kids move at sloth's pace. 

I get agitated and anxious when things take too long. I'm a total Type A-er. Wait is that even a word? This summer I've been trying to take the kids to do fun stuff and it hit me. I'm yelling "HURRY UP, GET IN THE CAR!!!!" I'm pretty sure even the lady down the street got in the car at that point! :) No in all seriousness, I was rushing them to go have fun. In the process, crushing their fun and causing chaos and anger for all of us. How was this fun? Would even be fun? I mean why was I rushing them and causing all of this? I wanted to just hurry up and go. It's not the fun would suddenly stop if we were 10 minutes later. 

After reading Rachel's post, I'm more aware. Yes there are times we need to be in a rush, we have doctor appointments or someone waiting on us. Otherwise, rushing was causing me more problems. I'm working on it, like really working on it. There are things that need to done right.this.minute... but the other things, we'll get to, eventually, like most things in life. 

As for me, I'm feeling a little more relaxed about the whole thing. I'm really focusing on it more and trying to improve for them and mostly for me.

Prosthetic update!

Wednesday, Bella and I finally get to go to Chicago and pick up her prosthetic! To say we are excited might be an understatement. We'll probably test it a bit there then head back. I'm sure what I'm thinking in my head will be an hour long appointment will take much longer.

This is the "pick up" appointment. Tomorrow is when we pay for it. I'm so thankful for good insurance! We'll only be eating ramen for the next month :) Jokes aside, our out of pocket is 10% which comes out to just over $1,000. Why am I telling you this? Because nothings free. Not only is the time and headache of making all of these appointments then follow up, there's also figuring out where you'll pull the money from. It will also give us the opportunity to budget this in the future, knowing that she'll need a new one about every 18 months-2 years. So far, insurance only approves a "new device" every 3 years. That's a battle I'll start fighting later. I think it's important for parents of children with limb differences to also realize the cost. I thought when you went through Shriner's that things were cheaper. For us, we still have a co-pay at Shriners as well as our location doesn't do prosthetics, they contract that out. So that's how we ended up at Scheck and Siress. Neither here nor there, there's a cost, that if you are like most

We'll plan to pick it up then come home and really put it to use. Really test it out and be sure there are no weird rubbing places and that she has full opportunity to take full advantage of using it so we can follow up, hopefully before we head to Camp No Limits. She'll have one more appointment at least to follow up on fit.

This is pretty much perfect timing with Camp No Limits right around the corner! Camp will give her the opportunity with people that are similar to her to test drive the prosthetic fully. I'm sure there will be a number of people there who can encourage her and help her get used to using it for the tasks that she wanted it for.

So far, we'll all booked for camp, minus a rental car. Camp is quite a distance from the airport so we need a rental car to get from point A to point B. Then we need to pack, packing for 5 is NO easy task... I pack for 4 of us. That's a handful to be sure that you have everything. That's where lists come in handy!

I'll keep you all updated after our appointment on Wednesday!

Juggling?!

Our school does a thing called High Interest Day. It's a great day filled with fun and activities that our Parent Faculty Council (PFC) puts together. It's a LOT Of work for all involved but the kids come home with memories that can't be replaced. Bella once made a jump rope out of rubber bands that she was super proud of... until her younger brother decided to take it apart (yep, insert eye roll... ratty brothers!)

Bella missed the sign up day so one of her best buds signed her up. He signed her up for yoga, juggling, marbles, paper crafting and a few other things. I was volunteering in her brother's room for the morning but was able to pop in and see what she was doing from time to time as well. It was a nice way to see the school in action and the kids filled with smiles and laughter.

(Marble games)

I ended my sessions and was able to watch her do juggling for about 15 minutes before I headed out. I watched the demonstrator juggle scarfs, balls, bowling pins and a few other things. He gave some tips and some pointers. The kids were given feathers and he talked about how to keep the feather straight up. I watched Bella and the other kids as they focused on the task. I glanced his way and saw the way he looked at Bella. I wasn't pleased. I could tell that his wheels were turning and that his face had an expression that stamped into my brain. His face said "What the heck is a kid without two hands doing in my juggling class?" My heart hurt but I forced a smile and he turned away.

(who knew balancing a feather could be so much fun?!)

I stayed while she continued to work on the feather tricks and took a ton of pictures of her and the other kids. She had a constant smile on her face. Bella really enjoyed it. My heart was still hurting because I wondered if she saw the way the juggler had looked at her. Her face painted a different picture. She clearly didn't notice and wasn't concerned at all about juggling. She was enjoying the things that they were doing and was unphased by the expression he had made.

That night I asked "How did High Interest Day go?"

"Best day ever!" she said.

"It was SO fun!" Grayson said.

Clearly my kids enjoyed the day and juggling wasn't something that effected her in one way or another. Kids figure it out, better than adults. Juggling was a small piece of the pie for the day. Did I ask her how juggling specifically went? No because in the end, if she didn't feel like it was worth talking more about, then it wasn't. Let your kids be your guide and go with it!

Some things are so taboo...

Today, I read a post on social media about another mama having a miscarriage and not knowing what to do. Her doctor gave her options and she was asking for help from anyone that had been in her situation.

While, I don't talk about it often, I've also experienced a miscarriage. When Bella was nine months old, we got pregnant again. Eight short weeks later, we went in for our first ultrasound and pregnancy staging. My mom was there and my husband. My mom was videoing the whole thing because she was so excited. I remember not seeing the little blip of the heartbeat on the monitor. I remember telling my mom to turn off the recording. I'm pretty sure I even said some profanities. I remember being taken to a small office to meet with my OB and her telling Ryan and I our options.

I remember sitting in that room in shock. While we had not "planned" that pregnancy, we were both excited. It was ours together. The joy of being pregnant was suddenly taken and the shock and sadness overcame me. There was nothing I could do to bring it back. The baby should have had a heart beat by then... but instead I was staring at an empty sac on a screen. The hopes for this baby were taken before I could even swallow the lump that sat in my throat.

Not only would I go through the stages of grief, my body would also have to experience this loss. It wasn't just over because the screen said so. My body had to do it's thing to absorb or expel what would have been our child. I was initially in denial that the heart beat wouldn't start.... as expected.

We spoke of our choices. I could let things happen naturally, have Cytotec inserted vaginally or have a D & C. Cytotec is a drug that would speed the process. A D&C meant a surgical procedure to have the tissue cleaned out. Being the hippie mama that I was, I wanted to do what was the easiest for my body and the least amount of stress. I also wanted to just take some time to soak in what was happening. I was still nursing Bella and didn't intend to quit. Under the guidance of our doctor, I opted initially to wait a few days to see what my body would do.

At follow up, nothing had happened. There was still no heart beat. No tissue had been expelled, instead my hormones and body still thought I was pregnant. We were literally at a stand still. I was shocked and in disbelief. What was wrong with my body that it wasn't doing anything! I was angry. I was angry that I was going through this. I was angry that I was sad. I was angry that my body wasn't working. After speaking again with my OB, we decided to Cytotec. After round one, nothing happened still. I bled a lot. Like couldn't leave the toilet a lot. Once again, at follow up, it was confirmed that the tissue was still there. The cramps were horrible. I was nauseous. I sat on the toilet, bleeding, as I held a trash can waiting to puke.

We opted for a second round of Cytotec "Sometimes the first one just gets things going and the second dose is what really gets the tissue to expel". Okay I thought, well I'm already going through hell so why not speed this whole thing up. I wanted to be over. I begged and pleaded with God, with my body, with any higher power that I thought might listen. Please just let my body work! In the meantime, I was still nursing Bella and trying drink as much as I could to produce the milk that her little body needed. She was the saving grace. She needed me and I needed to be needed. However, the second round was worse. The bleeding and nausea increased. The pain and cramping increased. I cried in the wee hours of the morning because I was so uncomfortable and my body felt like it was against me.

Back to the doctor a couple of days later and still nothing. It was confirmed that all the bleeding wasn't causing the tissue to expel. What the actual hell! I was even more angry. I remember wanting to punch something. Why did my body hate me? I just wanted to move passed the part of physical pain. I wanted to move forward with the emotional part and how could I with all of this still happening? At this point, I opted for the D&C. The part that gets me though is it is listed on your chart as an abortion. It pissed me off. I was NOT aborting my baby, I wasn't choosing for this to happen to me or to our family. Why must we as a society label EVERYTHING?! Whatever, I'd explain it when people read my chart if I must. I didn't want to be a stereotype of someone who made this decision... but society didn't care. That's a whole different post in itself! So I opted for the D&C and scheduled asap. 

The day came for the surgery. It was once again confirmed via internal ultrasound that the tissue was still there and no progress had been made. I was taken for surgery. I remember nursing Bella moments before then handing her off to Ryan. I remember waking up to a nurse asking me how I felt. I remember a volunteer handing me a little metal pin that had two foot prints on it, it had a little saying that said something about "we're sorry about your loss".  I remember thinking that was something that I would carry with me forever, I still have it. It sits hidden in a special spot. I remember being wheeled out of recovery and meeting Ryan and Bella. 

The physical journey had ended but the emotional journey had just begun. How do you deal with the loss of someone that you never even met but just loved just the same? You just do... you find your own way. I remember journaling. I remember wondering what the future of our family held, did we start trying for another baby soon, did we wait, what was the right thing to do? Looking back, there was no "right" choice... or wrong choice for that matter. I remember us making the decision to try again and getting pregnant shortly after. I remember the fear of possibly losing another baby. I remember trying not to emotionally attach and not to think about the future... until the heart beat was confirmed. 

Six and a half years later, here we sit. With three beautiful, healthy, spunky children. Our family is complete. Do I still think about that baby we lost? Yes, from time to time it comes up. I'm reminded often that Grayson is our rainbow baby, the one that came after our miscarriage. I'm also reminded the he saved my soul when my dad passed away and that our lives would be different had all of that not happened. I wear a necklace around my neck with a charm with each child's name... and a heart. The heart is the symbol of the baby we lost and the baby I loved. The others are a symbol of our life, the one we live, the one we love.

Options

We had our appointment with the prosthetic company a few days ago. I'm still trying to digest things. I think Bella is filled with excitement. I'm still trying to process it all. Insurance, myoelectric, body powered, occupational therapy, cost, time, learning, exploring, deciding, attempting. Never once I have I doubted my daughter's ability to figure things out in her own way. I can't tell you how many times I've practiced one handed shoe tying, zipping and buttoning. I've thought about how she'll open makeup containers, curl her hair or paint her nails.

Our appointment opened a few doors. Bella is dead set on a hook, she does NOT want a hand. She initially (a few years back) said they look "creepy". Currently she said "They aren't really creepy any more it's just not what I want". Fair enough, her body, her decision. So we discussed "hook hands". We have a couple of options. A body powered hook that would strap around her body. Excuse the lame picture but I wanted people who are clueless about this stuff to understand what it may look like. Basically the straps go around the shoulders and under the armpits. And you thought a bra was constricting!!

She's decided that the body powered hook would get in her way and bother her. She's for sure my child! I hate tight elastics, anything that constricts or doesn't allow me to move freely. The myoelectric would cover most of her left forearm, however it would have motors and such so that she does not need straps around her little body. She says that this would be a "good one for me because I'm not all strapped up".

For now, we wait. We wait for the company to get the myoelectric sensors so we can do some testing to be sure she's a candidate for a myoelectric. We wait for the prosthetist to talk with our insurance about costs and options. Did I mention how irritated I am that the insurance gets a say in what will work for her? It bothers me that someone sitting behind a desk gets to decide, that person probably has two completely functional hands and has no idea what their life would be like with less... It's like having someone tell me what pants will fit me best without knowing what I'll be wearing the pants for or what size I wear... Okay so yeah, we wait. Once those things get figured out, we go back in. Bella does the sensor testing and then we do some molds. We just had measurements done at our appointment the other day.

I'm good at waiting... or not!