Helping friends

Bella has been a little sidekick for our friend, Amy at A Doll Like Me. She's BLOWING up on her gofundme campaign and is interviewing left and right! Amy asked if Bella could help out with sharing why having a doll like you is important and Bella, of course, has strong opinions about why! I really enjoyed being there and listening to them both speak. Amy is SO passionate about what she does and she's a one woman show. She's currently running the media, making the dolls, communicating with all of those interested, communicating with people about interviews. She might be the definition of insane currently, but we still love her! As for us, we are SUPER proud of her and happy to help! 

Be a little LESS judgey

I was at the gym on Saturday minding my own business when I overheard a woman say "She should've bought at least 25 boxes from her daughter!"... they were talking about a little Girl Scout who only sold 25 boxes of cookies. I continued getting ready but it got under my skin. It got so far under my skin that 2 days later, I'm still annoyed by it.

Can we be a little less judgey please? I mean for the love of Pete, she sold 25 boxes, I'm sure other girls sold 100, some even 200... but lets be real, not all of us have it in us every year to beg people to buy shit from our children.

Let's think about the stuff my kids raise money for: Jump Rope for Heart, Girl Scouts, Camp No Limits, Magazine sales, spring fundraiser, fall fundraiser... that's only the start I'm sure. But here's the thing, while I love Girl Scouts and I will eat the crap out of some thin mints, I have to balance my priorities.

This year during cookie sales our Luna girl was SO sick. The last thing I cared about was how many boxes of cookies my daughter sold OR how many I bought. My concern was for our dog, how my kids were dealing with a dog they knew was sick, balancing work, home, relationships, balancing homework and fun, balancing how to best help our Luna to be sure she was getting the best care possible and the most love. There were MANY days I spent home snuggling her instead of running errands or going to the gym. There were days I spent cleaning up dog accidents and then loving Luna. There were days I ate too many chocolates and days I didn't drink enough water. My priority in all of it was Luna.

What I'm saying is that people EVERY WHERE are listening, even people in the gym locker room. I'm a girl scout mom and I felt judged by these bitches in the locker room. Yes I said bitches. Think about kindness, think about love, think about joy. A little less negativity people.

Tonight, I listened to my sweet 9 year old cry herself to sleep about missing her dog. About missing her snuggles and her "unconditional love, she just loved you no matter what. If you were sad or happy, she loved you. AND she knew, she knew if you were sad and needed extra love." I told her that someday, she'd understand that as her mama I loved her the same way her sweet pup did. I love her no matter what. My words "if you are happy or sad, if you are a total jerk or the sweetest angel, if you seriously fail a test or if you do amazing, I love you endlessly, no matter what. Someday, when you are a mama, I hope you realize that I love you like Luna did."

Be like Luna, love unconditionally, no matter what.

Most people are good

Have you heard the Luke Bryan song "Most People Are Good"? It's one of Bella and I's favorite songs. It's a great song!

"I believe most people are good and most mama's oughta qualify for sainthood...
I believe this world ain't half as bad as it looks. I believe most people are good."

If you ever see us jamming out in the minivan, it very well might be to this song. We blast it!

Here's the thing, there's so much bad in this world but what if, just what if we spend more time focusing on the good?

I reached out a few days ago to the founder of the Lucky Fin Project, Molly Stapleman, about music and a recorder. Bella's PE teacher this year mentioned that in the second semester they do recorders in music and she was thinking about how Bella would do that. (Side note: I love that she's thinking about Bella and how she can help her or what might help her even if it's NOT a PE thing. That's amazing!) Molly is an amazing advocate for children with limb differences. Hello she founded the Lucky Fin Project! I've followed her since before Bella was born. I should add that I've never actually met her in person, someday though, someday!

Molly offered to send us a recorder for Bella for FREE! This might not seem like a big deal to the rest of you. However for a kiddo with one hand that just wants to do everything that everyone else does, it's GIANT!! I was brought to tears when she said she'd send one and then said it was free. I offered to pay and she said no. Who does that? I'll tell you who, Molly does!

The community for kids and families of kids with limb difference is nothing short of amazing. I know I'm super passionate about it. I might even annoy the crap out of people with my excitement but seriously, be the good there is in this world. Everyone should be a little more like Molly!

Doctor update

Our pediatrician signed the prescription for the prosthetic. I knew she would, it was just a matter of WHEN it would all happen. It's kind of a lot of steps, I'll break it down a little.

1.  Find the best prosthetist in the Milwaukee area for kids AND upper limbs- DONE
2. Call pediatrician to get referral to prosthetist- DONE
3. Schedule appointment with prosthetist- DONE
4. Complete appointment- DONE
5. Hanger to send more information to pediatrician with more information from the visit and their recommendations for what would best meet Bella's needs and help her stay safe- DONE
6. Call pediatrician to verify they have the documentation from Hanger-DONE
7. Pediatrician to review Hanger's documentation, sign prescription and send it back to Hanger- DONE
8. Hanger to send information to insurance- WAITING
9. Call insurance to be sure they have the information necessary to make a decision-
10. Insurance company to review information sent- This usually takes 5-15 business days.
11. Call and encourage them to approve the prosthetic-
12. Insurance company must approve or deny prosthetic-
13. If approved, more forward with making the prosthetic-
14. Casting to fit prosthetic to Bella- DONE
15. Prosthetic completed and Bella to come in for fitting and adjustments-
16. Another fitting after initial adjustments, this could be a final fitting or may need more adjustments
17. Thank everyone who helped us in the process
18. Celebrate the new prosthetic

What's actually in the 504?

I shared the meeting process in a previous post but I didn't share what's in her actual 504. Today, I'll share what adaptations we make for school and what we have written in her 504. I'm doing this in hopes that it will help someone who is the parent of a child with a limb difference. I'm also sharing this so others know the things that help Bella be more successful in the school system.

Super simple change #1- put paper towels in a drawer near the sink in the classroom. While this may seem like a small thing, her teacher last year did it for the first time. Bella found it super kind that her teacher did that AND it was helpful because the paper towels didn't shred every time she tried to pull one from the dispenser. You know those dispensers that show a picture of both hands, try using one hand next time. They tear into small pieces or shred all together. Small changes= big difference!

A big focus is physical education and safety. We have it written in our plan to "consult between parent, PE teacher, and district PT quarterly to review unit activities and adapt if necessary". Bella's PE teacher and I have really great communication and this has helped. We actually met last week which was really helpful for talking about what units are coming up and our plan. We had a solid plan in place prior to the 504 meeting which is one reason we breezed through the official 504 meeting.

Bella and her PE teacher for pre-teaching outside of the classroom. This occurred last year and according to her PE teacher a really great boost in her self-confidence. Once the skill came up during the class, Bella and her PE teacher already had their plan in place for adaptations if necessary. This allowed her to walk into PE and start the skill right away. This allows her to feel comfortable and also helps that it doesn't take time away from the actual activity during PE.

Safety during PE is essential, especially when it comes to weight bearing on her upper extremities (arms). When a person is missing fingers, their balance and stability is compromised. Her prosthetic has really leveled the playing field. It allows her balance and stability and allows her to safely weight bear on her arms and hands. That alone is worth the cost in my eyes! When Bella does strength or balancing activities in PE, I've asked for her to be closer to the teacher so she can be more closely observed. This is written in her 504.

Another "little thing" that we do is photo copy longer math work or class notes to reduce writing fatigue. In fourth grade in our district, kids are assigned an I-pad through school. This is really helpful because now Bella can take a photo (suggested by the principal- which I think is a great idea!) so that she can have the information for later. You can also edit the photos so she could "write" on the screen. Anything we can do to help decrease the workload of that right hand, we will!

She also has the option to use technology resources for assignments, such as Voice to text, read write, word prediction and see saw. That's written exactly in her 504 plan. I wanted her to be able to voice to text for longer assignments, again to reduce workload on her right hand. Sometimes, I will transcribe her answers or write things when we are home in order to decrease the workload. If she has a paragraph to write, she will tell me what to write and I write her words exactly.

The last thing is allowing her extra time for self help and daily living activities. Buttons, zippers, shoe tying are usually a non-issue at this point, however sometimes it does take her a little longer. I'm not talking 10 minutes longer, just a minute or two. The transition from lunch to recess when you have to change to winter gear can be problematic. We are still working on a glove that will work to keep her left hand warm and allow her to still be independent.

This year, we'll face recorders in music. Lord help me... kidding, kind of! Anyhow, we'll have to figure out what works for that!

504 meeting update

Our 504 meeting was Tuesday morning. Our 504 team this year included the principal, a district physical therapist, the physical education teacher, the school psychologist (she kind of runs the meeting), Bella's classroom teacher and myself. The only person new to the meeting was Bella's classroom teacher since that changes year to year.

I do not bring my kids to the 504 meetings. I've found that mostly it's boring adult talk... though I forsee that in Bella's future this might be something she wants to be a part of. It will teach her how to advocate for the things that she needs as she gets older. We'll address that when we get there. So, where did the kids go during a meeting at 7:30am? Thankfully I have a fabulous friend and neighbor that watched the boys so they didn't have to be entertained. They love going there so they were thrilled! Bella had her FIRST choir practice, so she was busy as well.

Going into the meeting, I think it's important that I have my own expectation. My expectation ultimately includes Bella staying safe and being cautious with overuse of her right hand. You and I get to do things with both hands, like cleaning, opening a jar or a door, holding things, typing... remember for her, her right hand is taxed with 100% of the work. She's nine now so it might not be a current issue, however I assume it will be an issue as she grows and gets older.

This years meeting was a breeze, like less than 30 minutes! I brought her old plan so I could reference it. The psychologist had her new tentative 504 plan. We whizzed through everything and were done quickly. It was truly a seamless process. I'm so thankful for our school and the people that are passionate about helping our kids succeed!

On my agenda

It's on my agenda to make myself a shirt that says "Advocate like a mother". Really! Advocating is NOT for the weak. You need a big pair of....

All jokes aside, this whole prosthetic process can be really frustrating. REALLY frustrating! So yeah, I'm not backing down. I was chosen to be Bella's mother for a reason and I will advocate for her until she gets what she needs to be successful. 

After the kids got off to school today, I was having a moment. A moment of sulking, of missing babies at home, of homework struggles, of school struggles, bus struggles, missing my dad, struggling with my body, work struggles... just life was really feeling a bit rough. I was daydreaming about loading us all up in the camper and going on endless adventures. Lofty goals, I know. 

(camping earlier this summer)

In my moment, I decided I was going to call insurance just to ensure that they received the request. They haven't. That's a joke right? Wrong. They had nothing on file from anyone regarding a new prosthetic... ugh. 

 I have worked in the medical field for 16 years and nothing frustrates me more than the medical field. In all seriousness, it can be a like you are circling the drain waiting and worrying. I remember back to when my mom had cancer, they did all the testing then it was hurry up and wait. There's no waiting with cancer people, run those tests and let's kick ass and take names! Thankfully my mom did just that. What's a mama to do when she finds out that basically we are still sitting at square one. You call Hanger to find out what's the hold up. I did just that and they are sending things over to our pediatrician today. She will then write a prescription for the prosthetic. The funny thing about all of this is that our pediatrician has NO other patients with limb differences or amputations, just Bella... It's safe to say she's really educated on the whole thing *rolling my eyes*. Thankfully she's a really smart woman and will figure out what she can do to get Bella what she needs. I'll expect a phone call early next week from them. 

Now we wait... I hope your patience is better than mine! 

504 meeting

Part of our 504 plan is to meet with Physical Education teacher quarterly. We recently met for fourth grade first quarter. This part of our 504 is really important since there are modifications that need to be made or changes that need to occur to keep Bella safe and to ensure she is able to participate.

Her PE teacher is awesome. She's constantly brainstorming ways to help Bella. She came up with some time outside of PE to trial a new skill that might present challenges. Bella never really mentioned it to me outside of our initially 504 meeting last year. Her teacher would say that it was working out well and that it was useful.

When we met, I figured out just how useful that time was for both of them. They could talk then make changes or brainstorm together. Hearing straight from the teacher how it worked for them was great. It made me realize just how hard she is working on Bella's behalf. I could tell that she had already thought about some ways to help her for this coming year.

We talked about her current prosthetic and the fit. This could present some challenges for weight bearing on her hands at the start of this year. She suggested manipulating the scheduling of testing off for Bella so that she could be successful in the skills. This may mean that we have to wait for her new prosthetic for her test off. One example is push-ups. She can't really weight bear safely on her left "hand" for push ups. The prosthetic ensures that the wrist on her left hand is safe, it also ensures that she has a stable surface. The "mushroom" attachment provides the stable surface. For you or I, we have two hands with fingers to keep us stable.

We talked a lot about how Bella had changed last year. Her teacher felt her prosthetic made a big difference in her mindset. She worked hard to figure out a way to make things work. She was quick to put on her prosthetic at appropriate times, sometimes she would have a friend help. She talked about the skills that she utilized the prosthetic for. From hockey, to jump rope, the tumbling... the list is extensive. It allowed her to have the same opportunities as her peers! It's all about leveling the playing field and making things EQUAL.

She will never have two typical functioning hands. For us and for her, she shouldn't be excluded due to her limb difference. She should be able to do all of the things the other kids are doing, limb difference or not! She ties her shoes, fixes her own ponytails and does so many things in a way that's different from me but it works for HER. My job as her mama is to advocate for her to ensure that she is getting those equal opportunities. I'm happy to report that her PE teacher is also ensuring that she has equal opportunities as well.

My eyes welled up with tears when she talked about the difference she has seen in Bella since she got her prosthetic. Does she use it every day for every task? No... it's really task specific. You can't use the mushroom attachment for holding pencils. It's specific to upper extremity weight bearing exercises. You can't use the other attachment for much that we've found. We've used it for bikes but it pinches her inner elbow. We've used cord keepers and that attachment for hockey, jump rope and a few other things.

(She has the one on the far left of the photo)

If you don't have a 504 for your limb difference child, I would recommend looking into one. It just puts some things into place that might help you keep your child safe and functioning at their full ability. We have her FULL 504 meeting in a little over a week. I'll update as we have the full plan in place in hopes that it can help another family. 

Prosthetic #2

Today we started the journey of a second prosthetic. In a new place, with new faces, a new prosthetist  and new insurance. This will bring new adventures and new challenges. It will bring a fresh set of eyes and an expert like no one else. The guy we saw this morning is dubbed the best for kids in the Milwaukee area, how lucky are we?! I know people who've used him and loved him so that brings another level of comfort and excitement.

We knew when Bella got her first one that they generally average about 12-18 months of use before a new one is needed. Kids grow and they grow quickly. Her current prosthetic is causing numbness in her nubbin, what would've been her thumb. She had tears in Idaho at Camp No Limits because it "doesn't feel good". Imagine me saying "put your size 7 shoes on" when you really wear a size 9. Your feet would hurt! That's how she feels wearing her current prosthetic. For her, it was literally at the 12 month mark that she started having discomfort which led to pain.

I mentioned challenges, yes challenges. With a new device there will be challenges. It will feel different, it will fit different, there will be a learning curve. Just like driving, when you get in a car that you aren't used to, you have to take a moment to get your bearings and figure it out. That'll be Bella, and us and her prosthetist. All working together to make the magic happen for Boo Bear.

Insurance challenges are sure to come. I'll spare you our deductible which hasn't yet been met but it's high. Then we are responsible for 20% of her prosthetic, though I'm sure there will be a denial or two first... because usually it's someone with two perfectly functioning hands making the decision *insert eye roll* We'll face that challenge when we get there. This girl has a NURSE mama, I know medical terminology and I know how to advocate like a mother... a dangerous combo for the person making those insurance decisions. Until then, we won't worry.

Today, we went to the Hanger Clinic that is inside of our Children's Hospital. (I'll save the why we switched for another blog.) We arrived about 25 minutes early and started reading a book for school. Hey no time like waiting to log those reading minutes!

We met our new prosthetist. From the minute we met, I knew he was our guy. He greeted Bella right away and started talking to her. Then I introduced myself. We went back into the room where he asked BELLA some more questions. Why were we there? What did she want him to do? What were the issues with her current prosthetic? What would she like in a new prosthetic? What bothered her with her current prosthetic? What did she use it for? What would she like to do? We talked about a new terminal device. Here's her current terminal device for reference. That's the piece that's too small.

 

This picture shows where you attach the different pieces, like the mushroom for gymnastics or the bike attachment (she also uses that for hockey and a couple of other things in PE)

We also talked about a myoelectric. That works by electrodes inside the arm that respond to her muscle movements. We talked about what she would be able to do with a myo that she doesn't currently do... pick up things with BOTH hands, she could use it on her bike, hold a barbie doll in her left hand, hold a cup in one hand and a plate in the other, sweep and use a dust pan :) Ha I added that one! The thing about a myoelectric is the cost, they are pricey! Google tells me they are $20,000-$100,000. As a parent, it's frustrating that insurance won't pick up more of the cost... I won't get on my soap box about insurance... right now! Anyhow, there are lots of possibilities with the myo that she won't otherwise be able to have. These are the things that those of us with two hands take for granted every.single.day.

The attachments for the prosthetic she has are still in great condition. She told him what she uses the attachments for and why she likes them. She also talked about what she would like to do. Monkey bars are a big one. We'll for sure add the jump rope attachment once she gets a new terminal device.

He wasted no time taking measurements and then casting her for a new device. He said that Hanger will contact our insurance company and then we will go from there. We'll have to wait to see what the coverage and allowances are so that we can make some decisions from there. She told him her current arm makes her super sweaty and she doesn't like that. He has some ideas that may be a better fit for her. I truly felt like he was an expert in this and would think outside of the box, if necessary, to help her get what works for her. 

(This was the only picture she let me take of the whole process!)

35 minutes in and out, which was awesome! We didn't feel rushed. I felt like he really listened to what Bella wanted and what would meet her needs. Bella said "Mom, he's SOOOO nice!" Ultimately, I know that he's the right guy for the job. I know that we will work collaborate to best meet the needs of Bella. I'll keep you all in the loop as we continue on this part of our lives. 

In the meantime, back to school for this gal!

Back to school!

Today is a big day at our house! ALL of the kids will be in school. While I know there are mamas who sit and cry in the corner over their last baby starting school, I'm not one of them. I get it, I really, really do. I empathize with you but I will not be the mama sitting with you.

While I get that your last baby is going to school, I'm embracing this phase in our life. I've embraced each phase as it's come and as it's gone. I realize my days of spending all day with my last baby are done, I get to celebrate and appreciate him a whole new way.

Luca is beyond ready to start kindergarten. I've been told before that he needs the stimulation. He's quick to learn and loves making friends. Heck, after less than a day, he learned to tie his shoe. I think he'll pick up the school routine quickly. Maybe not easily, but he'll get the hang of it quickly. The morning bustle, the getting on the bus, getting off the bus, finding his way, meeting new friends, embracing a different kind of routine, then coming home and all that comes along with end of the day stuff.

A new school year means new things for everyone. It means seeing old friends. It means welcoming and making new friends, which we've already accomplished this summer! It means new schedules, fresh lunches, routines, schedules, new teachers, new classmates. It's really exciting. I try to build up the excitement a lot at home, especially about how amazing their teachers will be. I really value and appreciate our teachers, which is another story.

Mama starts a new semester today too. It's hard to believe I've been teaching full time for almost 3 years. With each semester means changes as well. A new student group, a new schedule, new colleagues and old friends. I get a "fresh start" with each new trimester, it's kind of exciting and fun in my opinion.

I've asked Bella about talking to her class. I've done this EVERY YEAR since kindergarten. Here's the thing, this year I asked and she asked to wait and see.

"Mom I mostly know every one. I mean there are 3 new kids but let's just wait and see how the first day goes."

While I died a little inside, I watched her sweet little face. She was confident and strong. She was brave and happy. She is growing up and she's becoming more certain of who she is and what she wants. This makes me one proud mama. I'll keep you all posted on her final decision in the days to come!

Can we talk about "camp dads"?

Which ones are daughters and which ones are dads? Hard to tell with the hats and dresses but I'm pretty sure the facial hair gives it away! This is the second year that some of these guys have dressed up for the talent show because their girls asked them. Talk about a dedicated group of men.

Guess who? I'd hate to give it away BUT I will tell you there's yellow tape over his nipple because Luca promptly came down the stairs and said "I see your nipple"... nipple covered= problem solved!

Who's this stud? None other than my handsome husband! I about died when I saw him! I came down the stairs to ask him to go with me to take a family picture on the beach... needless to say that didn't happen. He also said he was glad he's not a woman because the dress is itchy. Too bad that's the least of my worries as a woman! Let's give him some boobs, some stretch marks, 9 months pregnant, and some heels and see how he does :) I'm kidding... kind of!

Can we talk about these lovely parents of TRIPLETS? Dad is a military cop. Mom is a badass, homeschooling, military wife with triplets with all different needs. He put the boobs in his dress on his own. I bet Erin is glad he belongs to her :) 

In all seriousness, I meet with these dad's in the parents group. They share intimate details of their lives and challenges they face, fears they face and the way they handle situations that challenge them with their kids. These dads are incredible. I wish I had a picture of ALL of the amazing dads at camp. Idaho camp has some killer dads that are super involved with their children. Another dad comes to mind that has a teen, he's a strong guy who is attempting to instill a strong dose of confidence in his kid. 

These guys are completely incredible. They share moments at camp with each other and the other families. Watching their bonds form stronger each day and each year continues to make me proud to know them all. 

At the end of camp, I'm reminded how blessed I am to have this man by my side. Thirteen years ago, our journey together started, in a car across the country. Thirteen years ago, I had no idea that we would be here today sharing this life together. After less than a year of dating, I knew that I wanted him to be my husband. Today and every day for the rest of my life, I will love this man to the depths of my heart and soul. I'm glad he's on my team to parent our babies. I'm glad I get to share Camp No Limits with him. Here's the thing, some times I take for granted that we have each other. In the last year especially, I'm reminded why we picked each other. Together we can work through anything and come out stronger together. I'm beyond lucky to have such a strong man by my side! 

Stand up for yourself

A couple of weeks ago we had a bus incident. I debated sharing or not but here I am typing so I've decided to share. I'm sharing Bella's side of the story because that's what I know. I also know that we've had a history with this child so that plays into my mind as well.

Bella got off the bus in hysterics. Her face was beat red and her eyes were bright red. The driver motioned for me to come closer so I did. 

"She got smacked by a kid at school while we were still at school and the principal came out. The child isn't on the bus but she's clearly upset. Has the school called you?"

"No the school hasn't called" I said as I tightly wrapped my arms around my daughter. 

"Do you know who it was?"

Bella interrupted and said "Benny T (name changed to protect privacy) did it"

"Thanks for letting me know" I said to the driver. 

"What happened Boo?" I said as I was walking back to the house. 

"Can we talk in private?"

So we got home and we went right into the bedroom to chat. She explained that the child did something sexually inappropriate on the bus in the morning and her and another child reported the behavior to the teachers. When she got on the bus that afternoon the child was angry and said he "knew that she told". Whether he actually knew or not, who knows and it doesn't matter. He proceeded to "tap" her on the face then open handed smack her. The principal was called and apparently according to the kids on the bus it was a disaster to get the kid off the bus. His parents were notified. I called the school IMMEDIATELY. The VP was meeting with the other parents so I had to leave a message. To say I was fuming was an understatement. 

While waiting I talked to my kids about self-defense and what we view as "good self-defense" in our house... while it may not be okay with everyone else, here is what I believe. If someone puts their hands on my child inappropriately, my child has every right to punch, kick, pinch, bite, hit to keep themselves safe. While you might not all agree with that, that's my thought... We can agree to disagree. I'm all about you doing you and I'll do me. For me, keeping my kids safe is a high priority and this is one way I encourage them to protect themselves.

The VP called back shortly after. Our school has a "We can't discuss the consequences for other kids policy"... which I think is complete crap. It involved MY child and I feel like I have the right to know what the consequence is. I may think it's fair or not but I do think that I have the right to know, just like if my child did something, the other parent has the right to know the consequence. Yes, I understand FERPA and no I'm not asking for NAMES from the school. I've even asked "What happens if MY child did that, what would the consequence be?" and was told they'd discuss that if it happened... well out of my control so I opted to do what I could control... which isn't much.

Here's what I asked for: I asked for my child to be moved on the bus so that she was no longer sitting across from this child any longer. That was granted the next time they were both on the bus. It was a stretch but I also asked for them not to be in the same class for next year, as we've had multiple incidents with this child this year... we'll see if that's granted. I don't think that my requests were out of line.

What do you do to teach your kids to stand up for themselves? Are there books you've read with them? How do you teach them to avoid kids that are constantly causing problems? A big issue at our house is that Bella thinks she can "help others learn to be nice"... we've talked about this but she still wants to try. I value that she's a strong, stubborn kid and wants the world to be a better place. I want to protect and cherish that her heart is not hard to the world. But there's a part of me that wants to help her realize that we can't change others... I'd love to hear your suggestions or words or wisdom! This parenting thing is no joke! 

"Did you date other guys...."

Bella hopped in bed with me this morning and said "Did you date other guys before you married daddy?"

My eyes were BARELY cracked open, like my alarm had JUST went off. Where does this kid come up with such things?

"Yes I dated other guys before I married daddy. It helps you decide what you can put up with for the rest of your life" We both laughed, though it's kind of true!

"That's how you figure out what you want for the rest of your whole life, you date people and decide what you like and don't like. Someday, you find the guy that you love most everything about."

"Why did you pick daddy?"

Okay let's be real, my brain wasn't even awake yet... my eyes were still BARELY open! Why was this child asking deep questions at 6:30 am and where does she decide she wants to know the answer to this question. Where did this come up before?

"Really, why did you pick him?"

Okay that might not be his best angle :)

"For lots of reasons, he's kind and thoughtful. He's funny and fun to be around. He likes adventures. He's supportive of me and the things I love and makes me happy. I knew he'd make a great dad too, was I right?"

"Yeah you were right" and we both smiled. 

"He's actually a LOT like Papa John too. Someday I hope you marry a guy as great as your daddy."

"Well girls can ask boys to marry them right because I'm not waiting forever. Like when I'm 27, I'm asking the guy if we've been dating awhile. I'll get a ring or something."

"You can do whatever you want! If that's what you want to do then you can."

"Yeah and you and Dad will be old like Tutu then." Thanks for the reminder kid!

Limb difference facts

The cost for an upper limb prosthetic varies by vendor and your insurance coverage. According to my research, they can cost 3,000-90,000. Bella's cost about 8,000.

The world of glasses and kids

Thank goodness for school nurses and updates in technology! A few weeks ago, I received an email from the school nurse stating that Grayson's screening came back for anisomitropia. Say that 10 times fast! Off to google I went, I know, I know, I have pediatric nursing textbooks at home and many pediatric nursing resources at home BUT I chose google. Roll your eyes now... but I did! It quickly answered my question of what exactly is that and does he need to see an optometrist. The answer was yes, period.

I immediately scheduled with an optometrist that I worked with when I did the vision screenings at school. What I didn't realize is that all kids were being screened for was near-sightedness and not far-sightedness. Turns out Grayson is super far-sighted in one eye and he was missed. Whatever new technology they use showed that on the screening.

First thing last Monday, we saw Dr. Ryan. He was SO patient with Grayson, who can be shy and quiet when he's on the spot. He tried to force out his favorite animal and talk to him. Instead, silence. I tried too and he was still pretty quiet. Turns out, he needs glasses to level the playing field for both eyes. He *might* not need them forever but if you know me, I often don't even know what's going on next week. We'll focus on one day at time. So for today, he needs glasses. For today, we'll focus on how to make him feel good about getting glasses.

So who picked the glasses? Not even a shadow of a doubt on who picked them if you know me... Grayson did! Several schools of thought here. HE has to be the one to wear them when he's awake, all of the time. Which means if HE doesn't like them and feel good in them, it's highly unlikely that he'll wear them. I know what you're thinking, but what if he picks something crazy or bright or doesn't match the things he wears? I seriously don't care.

I let my kids dress themselves. Have you seen my children in public. Literally I push being dressed in weather appropriate attire (ah no shorts in winter!), teeth and hair brushed... pretty much that's the only battle I fight. Ryan is like "You seriously let them go to school like that?" You betcha I did because I didn't have to fight with them this morning, I didn't have to nag and complain about clothes. I find that my kids feel super confident in what they wear, even if they do look like they came straight out of a circus act. I mean when they are my age, it's pretty frowned upon to look like a circus animal or even a performing for that matter. I'm letting them rock that now. Express your personality kid, knock yourself out.

Yeah, he picked them. They are cute and they have YELLOW in them which makes them extra cool because that's his favorite color. He even took it upon himself to ASK the employee if they came in yellow and lucky him, they did! He's thrilled about that.

The limb difference thing, that's old news to us, we adapt and we move on. We've been dealing with it for over 9 years now if you count the time we worried when Bella was in utero. This glasses thing, this is new. A BOY with glasses, double new and sounds expensive. Yes I already ordered a cheaper backup pair online because well... I know how my sons play. We might be laying a few new ground rules once they arrive. Tips or tricks for kids with glasses? I'd love to hear!

I watched her sleeping

Last night, Bella asked to sleep in my bed since her daddy was working. I quickly agreed. Soon a day will come that she won't want to sleep in my bed. Tonight she did.

I got in bed late, as usual and looked over at her. Peacefully asleep on her daddy's pillow. Her long lashes rested on her cheeks, her whispy hair all over, her bunny next to her, all the covers kicked off. I watched her, I soaked her in. There next to me, lay my eight year old daughter. No longer a little peanut but instead a beautiful little girl took her place. Tears begin to softly roll down my cheeks. I couldn't shake the way I felt as I lie there and soak her in.

I remember being pregnant with her, wondering what she would be like, how she would grow, what her life would be like, what kind of person she would grow to be... so many what ifs.

Today,  I watched her as the tears rolled down my face onto my pillow. What a sweet soul she has become, always looking out for those around her. Always protecting her brothers and looking out for them. The other mother in our house. A bit of a worrier, a wonderer, sensitive, yet strong and stubborn, sassy but sweet and kind.

She patiently worked with Luca at the pool this passed weekend until he knew how to swim underwater at the tender age of four. She held her arms out as he jumped to her, his net of safety. She pushed him back to the stairs with the encouragement to try again, and again... and again. She tossed a toy to the bottom of the pool, went under, pulled it then explained the process to her little brother. She coached him on how to do the same thing, she reminded him that she would be right there. I didn't interfere, instead I just watched. I watched as she had the patience of a saint teaching her brother how to be just like her, swimming freely in the pool.

How was I so lucky to be this sweet girl's mama? How was it that 8 years had passed? How was it that now some of "what-ifs" were answered?

My dear girl,
You make me proud. Your kindness shines. Your laughter fills a room. Your warmness welcomes anyone to become your friend. I am proud of the sweet girl you are becoming and the way you treat those that are so lucky to be in your life. You guard my heart and are always thinking of how I'm feeling. You constantly remember that my dad died and how hard it must be for me without him. You are pushing me closer to God and pushing me outside of my comfort zone. Sometimes even grown ups need a push!

So you struggle with math, you get frustrated. My dear, life is not always easy. You pick yourself up again, you try again with all your might. You'll get it, be patient. I will always be her to pick you up and help you fight. You'll get it, we'll get it.

Know that it's okay to cry, for sadness and for joy. It shows that you have emotions and feelings. Life is all about expressing that to others. Showing them that you care, telling them that you love them and reminded them how happy they are. As I've said time and time again, I'm lucky to be your mama. I'm glad you are my daughter. There's no other daughter I would rather have in this planet.

As you grow, I wish you love, love like your daddy and I have. I wish you peace in your life, time for yourself and taking care of you. Peace when you feel overwhelmed or are hurting. I wish you friendships, like the friendship GG and mama have, an unending friendship that's there for life. I wish you happiness, like the happiness that I get when I'm reading with you at night. I wish you strength, strength to keep fighting, keep pushing, keep giving all of you to your life. I wish you adventure, the kind of adventure that makes life really worth living, the ones that make memories that last a lifetime. Money can't buy you happiness or peace, but adventure sure can!

Spread your wings my sweet child. I'll keep watching you soar!

Recess woes

Bella came home yesterday a bit sad. Her "friends" weren't being really friendly.

Her boy friends like to play football at recess and she's afraid the ball is going to hit her. Something we'll work on eventually... she's been working on it with her PE teacher but she needs more practice, clearly. Let's just say that the apple doesn't fall far from the tree. I hate (strong but true word) balls flying at my head... football would be my very last choice to play.

Her girl friends were playing with a girl that "doesn't want me to play with them". She always says "Don't play with Bella". To be fair, I've been around this child and she's kind of harsh and very opinionated. It's her way or the highway... While I've tried to coach Bella to find a new set of friends, she very much wants to be friends with everyone.

What does this mean for us as parents? It means instilling a bit more confidence in our girl. Ryan said "you are like the nicest and kindest kid ever!" While we think that's true, it doesn't matter since we aren't eight year olds. What matters is that Bella knows how to advocate for herself and how to chose friends that are worthwhile. It also means teaching her that she doesn't need to be friends with everyone.

What does that look like to an eight-year-old? It means treating everyone with kindness. It means welcoming everyone into your playgroup but being okay with the fact that not everyone wants to play with you. It means being accepting of those who are different and those who are they same. Embracing others individuality and uniqueness. It's okay not to be friends with everyone... it's NOT okay to be rude, disrespectful or hurtful.

This week at recess, Bella said "I played with George *Name changed for privacy*". "No one likes George but he's a really nice kid". I commended her for welcoming him to play and that it's okay to play with him if "no one likes him"... she said "people don't like him because he's different." We talked about how hurtful this must be for him and that even though he's "different", he's the same in many ways. He's a 3rd grader just like the rest of her grade, he's learning the same things, he goes to the same school... there are LOTS of things that are the same. I talked to her about how important it is to make him feel included and how it's important for her to stick up for him. Being a true friend looks like someone who will be there for you when others aren't. She understood that.

Being a third grader is no easy task... kids are starting to figure out who they get along with, who plays and interacts well together, who doesn't, they are really starting to figure out who they are and who they want to be. We talked about how when she grew up, many of her friends in third grade might not be her friends now! She thought that was kind of sad. I agreed, but also explained that we meet lots of people along our journeys in life.

Many of my friends now are people I work with or have worked with, moms of kids in my kids school, parents in the PFC, friends from nursing school... We talked about how friendships change as you grow up and how your friends change too. Each friend you have brings something different to your life and relationships. Each friendship is unique. Life will take go through different twists and turns and there will be friends who help you along the way.

Giving Tuesday

Giving Tuesday kicks off the season after Thanksgiving. According to the Giving Tuesday website, it kicks off the "charitable season of giving". This giving tuesday, I'm asking you to really think about the organization that you pick to donate... that is if you do. I'm asking you to give mindfully not mindlessly. Many organizations take our money and very little goes to the actual cause. It bothers me to think that money I have given in years passed does not 100% go to the cause I am supporting. 

The organization that means the most to our family today and every day is Camp No Limits. As many of you know, we attend camp every year. If we could attend every location, we would! But alas, work, school, life and finances for travel get in our way. Camp truly makes our year brighter. While we only attend once a year, the friendships that we make through camp last a lifetime. The support and love carry us through to the next time we attend camp. It's like having a family that supports you and lifts you up when you meet struggles. The kids and families that we meet through camp change our lives. 

I'm asking you to consider giving to Camp No Limits or give to our fund for travels to get to camp. Last year, it cost us over $3200 to get to camp, between airfare and rental car amongst other things. That said, it was worth every penny. I will continue to work my tail off every year to make camp a possibility for our family. Without the help of you and others like you, we would not have been able to attend camp. Last year, we received a scholarship to pay for camp and we only had to pay the $3200 to get there! That's a HUGE blessing! 

If Giving Tuesday is not your thing, no worries, I'll simply ask that you spread awareness. Spread awareness about Camp No Limits, spread awareness about limb differences, share our names with others so that I may help another family that is in our shoes, so that I can help them advocate for their child, so that I can be the support that they need, so that camp can be the family that they need, so that they can be aware of the many people that are in their shoes! 

Thank you for considering. Thank you for following our blog, for listening to our stories. 

Day Made

I've posted time after time about struggling. Tonight, the house was a wreck, we were running around like usual. Homework, chores, baths, cleaning, laundry, lunches, reading, bed. We try really hard to make bedtime a priority. Each kid usually gets a chapter read to them (In Bella's case) or a book (for the littler guys). I say usually because sometimes it just doesn't happen.

I climbed in bed with Bella to read to her. I finished her chapter and we were talking. We were laughing and snuggling. She said "You are the best mom ever". I told her how much that meant to me and how that was the very best part of my day. I told her how I really appreciated her sharing that she felt that way with me. "You really are the best mom ever". My heart was full. My mind was calm.

These are always the moments that I'll never regret spending. In the race of madness, it's just me and her... or me and one of the boys. It's one on one time that's so precious, so rare and so needed. These little reading moments add up. Tonight they added up to a really big moment for me.

There are times, so, so many times, that I wonder if I'm giving my kids the best I can. The balance eludes me most days... almost all days. Tonight, the balance was tough, as usual. It was a day that I wanted to throw in the towel and crawl in the bed. I didn't. I finished strong... stronger than I started. Thanks to my girl for being my bucket filler. For making me realize that even though sometimes I fail, I get back up stronger, I try harder. I'm glad she's mine. I'm glad I'm hers.

Our first meeting post 504

The PE teacher reached out to me for a meeting related to Bella's 504 plan. I met with two of the PE teachers to discuss fitness testing that would be coming up and football. Okay, head injury central! Hopefully she doesn't like football :) That's the nurse mom in me talking. Back to the story, so we set up a before school meeting to talk about their ideas.

When we met, they were prepared with the items that would be used for fitness testing and what they thought Bella would need. They didn't forsee any concerns or issues with her doing well, but they wanted to be sure that they were doing what was best for her. I'm glad that they were really putting some thought into her limb difference and what that meant in PE for her.

Needless to say, we both agreed that she should wear her prosthetic for any weight bearing activities on her upper limbs. Push ups was one of the things on the fitness testing. The prosthetic allows her to keep her wrist joint safe. I fear that while she could do the pushup without it, it could cause injury to her wrist joint. She does have movement in her left wrist and we need to continue to protect that. The other item was curl ups (like sit ups but coming up farther). They showed me what Bella would need to do in order to be successful. We agreed that wearing the prosthetic would put some weight on her left side to keep her spine straight during the curl up.

It was a short, sweet meeting. In and out in about 30 minutes. Those are my perfect meetings, a good agenda that is stuck to and people who are focused!

I must say, while I was excited about the meeting, it bummed me out a little that we had to have a 504 in place for more action to be taken. This is precisely why I advocated for Bella to have a 504. Having it in writing somehow makes it happen, at least for us. Does everyone with a limb difference need a 504? No... I mean it's taken us until 3rd grade to "need" one... though in the back of my mind, I can't help but wonder if having one last year would have protected her from her neck/head injury.