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!

Would you do it?

Today, Luca and I went to the Barnes and Nobles story time. There were a bunch of littles there with their parents or caregivers, most were much younger than Luca. I noticed a little guy that was born with no legs and shortened arms, no elbows. I glanced their way and smiled several times.

Instead of focusing on story time, my brain was racing a million miles a minute. It's always do you approach and say something or not... if you DO approach WHAT do you say? "so cool, my daughter was born with a missing hand?" Um no... "Hi I'm Sarah and I'm super passionate about limb differences" Um hello creep! "You were born like my daughter Bella" Nope not true, they are different... ugh. I struggled. Do I say something and what do I say? Will I seem like a creep? Or will the person with this little guy find it helpful? I spent almost 45 minutes debating what to do.

Then I reminded myself, I was once in the shoes of this little guys parents. Though different, very similar. There was a time when I had NO resources, when I knew NO other families of children with limb differences, when I didn't know how to teach my daughter to crawl, tie her shoes or even where she would wear her wedding ring... There was once a time I felt alone in my feelings, that I felt that I had something to do with her difference. I'm sure this kiddos parents wondered many things too. If they are like me, there are still things they wonder.

I grabbed my business card and wrote down a few things on the back: Camp No Limits, Lucky Fin Project, Joshua K_____. On the front, I added my cell phone. I held it close and still thought, how?

Then I said, whatever, I'm going for it. So I approached the person with the little guy and said something like "Hi I'm Sarah, my daughter was born without her left hand and I wanted to give you some resources that might help." She smiled and thanked me saying "I'm not his mom so I'll pass it along." She explained that she was a friend helping. She also said "Most people don't even smile at us". I bent down and said "Hi I'm Sarah, my daughter was born without her hand and I was giving your friend some stuff to share with your parents that you might like. How old are you?" I reached out my hand to shake his hand and he reached out one of his arms and I shook his nub. The little boy said he was 4. I said "My son, I'm here with is 4 too! Do you start kindergarten in the fall?" He was quiet and a little shy. I spoke with them a few minutes and I explained to the friend what each resource was and said to please feel free to have his parents call me if they have any questions or I can help in any way. She thanked me...

It wasn't awkward at all after the interaction started. Maybe they'll never call. Maybe they have all of these resources... but what if, what if they don't. What if ONE of those things can be helpful to them? I'll tell you what if... if it is, I've done my job as a mama and an advocate.

Successful 504 meeting

Last week, we had the official 504 meeting. It happened at 7:30 am on a school day. This made it easier for all the parties involved to be there at the meeting. I sent over my schedule openings and then they worked with that. Thankfully my schedule was pretty flexible last week.

Here's who was involved:
Occupational Therapist from the school district (OT)
The school principal
Bella's classroom teacher
Me
The district nurse (there's ONE nurse for the entire district)
The school psychologist (apparently she's in charge of the 504's for our school)
Physical therapist from the school district (PT)
One of the physical education teacher's from her school (there's two)

Who knew so many people were involved? Not me. That said, it was a productive meeting and all parties were highly valuable for our situation. I'll give you the run down of the roles every one played so that if someone else is ever in our situation, hopefully they can understand it better.

The OT had called me earlier in the week to discuss my concerns. She also had observed Bella in the classroom prior to calling. I didn't know she was observing. Turns out Bella also didn't realize she was observing. She was pretty discrete about the whole thing it sounds like from Bella's standpoint and hers.

The school principal weighed in occasionally about what needed to be actually written in the plan and gave her thoughts on the plan as we went along.

Bella's classroom teacher explained what she had already seen and done as well as her plans for the year. You know those stubborn paper towel holders that need "two hands" to get the towel to come out. She put a stack of paper towels in a drawer below the sink for Bella. I love that she thought of that! She said other kids are welcome to use them too but it's there so she doesn't have to mess with it. What a thoughtful thing! She talked about technology moving forward. She discussed how the kids usually write the math problem that she writes then solve it. For Bella, she's going to photocopy the page (no copy right laws are effected) and then Bella can write the answer. For long writing, they can have her do talk to text... there were tons of plans she had! I was impressed with her forward thinking. Loved it!

The district nurse explained verbiage for the 504 to be effective. She helped to think of when to call me and how to notify me of problems as well.

The school psychologist read the words from the 504 legal page as well as noted our plans. She has to be sure Bella "qualifies"... to me that was a joke but whatever I get it. It's a process that must be followed to a T for it to be effective and be a proper legal document. She also helped keep us on track.

The physical therapist mostly just listened. He'll weigh in more when PE comes into play if we meet challenges. I'm happy he's involved so that he's aware of Bella and the fact that she may have some needs.

The PE teacher discussed the curriculum for the year. She talked about things that she's been thinking about, like hockey, pickle ball, gymnastics. She asked questions about her "sports arm" prosthetic and when and how to use it. I walked her through the process but Bella does most of it on her own. We talked about how once we meet some of those more challenging skills in PE that we as adults will come to a decision on having her utilize her prosthetic. Though I want her to be involved, there are some times adults just have to make the decision to keep her safe, physically, mentally and emotionally. We'll work with her too when it comes to that. Her PE teacher and the physical therapist talked about having her have the option to try some of those skills without her skills, like practicing holding a hockey stick before she's charged to do it in front of her class. I thought that was a great idea.

The meeting stayed on track and lasted 55 minutes. In my opinion, it was very effective. We are currently waiting to see the "finalized" 504 plan. I have no doubts that it will not be a problem.

Navigating the 504

Apparently creating a 504 is easy for some and more difficult for others.

We were initially told by our principal that a health plan would be a better option for Bella. I trusted her and agreed. Then, after doing my own research, and a lot of it, I disagreed. A 504 would legally protect her and give something in firm writing that would help us to help her.

We were told that "if she qualifies"... I'm not sure how she wouldn't "qualify". If you read the legal language, she "qualifies"... Here is what I sent over to her school: According to the Dept. of Education website, the exact wording is "cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal..."

She was born with a congenital limb difference, which is an anatomical loss affecting her musculoskeletal system. This is documented on my prenatal record, her health care record, as well as easily visible to all.

I'm thankful for the Lucky Fin Project, Born Just Right, and Camp No Limits. Those places are primary places of support for our family in times like this. The people that are part of those sites bend over backwards to help, give advice, give guidance and support. It's essential when navigating things like this. As an "experienced" mom of a child with a limb difference, I'm still learning.

Why am I sharing this with you? Because this is already a trying process. It's taken a lot of effort and energy on my part. I'm working hard to make this happen for Bella. We need to have some things in place to help her continue to be successful in school, without injury and without overusing her right hand. Remember, that if your child has ONE hand, that hand does 100% of the work, 100% of the time.

I'm not saying your child needs a 504 just because they have a limb difference. I'm saying that my child does. She had a neck injury last year at school that could have been prevented. She also has complained over some soreness in her right hand, palm and fingers. I want to be sure I'm doing what's best for you. She's almost in third grade and so far, we've made no adaptations in school for her. This year, there will be some changes. This year, we have thought about some adaptations that will keep her safer and also keep her right hand in good order so that she doesn't cause injury at a young age. Any pressure we can take off of her right hand, we will. Talk to text is something our school utilizes currently so I'm hoping that she will be using it more so save her hand. That's something that can be "built" into our 504.

I want to do anything I can to help our community as well. Our official referral was sent over and now we are waiting once again. I'll keep you posted on the process as I find things out. If you have any questions, comments or advice, feel free to share! I've had a hard time finding 504 information for kids with limb differences. Most of the information that I search is popping up with kids that have ADHD.

Face your fears

Earlier today I mentioned going a  bike ride. There was lots of excitement and everyone agreed. Should I mention that riding bikes with kids is like waiting for a train wreck to happen? No, really. Usually there's crying, screaming, crashing, cuts, bumps, bruises, more crying and frustration by all parties involved. Imagine all that times three...

One example: riding down the street... 

Kid one- crashes into a grass ditch and refuses to get back on the bike.

Kid two- is actually pulling their bike and not riding at all

Kid three- driving around like a wild drunk, crashing and doing it again... faster

(Pre-bike ride today, super excited, can you tell?!)

That sounds fun, right? Come on, doesn't it make you want to bike ride every day? Yeah, me neither. So for awhile, when we biked, I walked.... while ONE kid rode. This saved us all a little sanity. That can only last for so long though, so tonight I offered while praying to Calgon, God, Buddha, and anyone else that might be listening. 

Bella was SO excited, then I made her grab her new sports on with the bike attachment. Then she cried. 

"Mom, I do not want to do this. You are SO mean. Why are you forcing me to do this? You never listen to what I want. You are the worst mom ever. I don't even want this thing (pointing to the prosthetic). I never even asked for a bike hand. You wanted that, not me. I ONLY wanted the one for tumbling. UGH! I'm not going"

"Uh yeah you are. I'm sorry that you are not happy but you are trying this. I'll be right there to help you but you are wearing the prosthetic for ONE block."

More tears and frustration. "FINE but ONLY for ONE block!" 

"Sounds good!" she doesn't get a choice to brush her teeth or comb her hair because as her mother, I know best. She was not getting a choice about at least entertaining the option of trying the bike hand for one block. It's not like I was asking her for something crazy. It was completely reasonable and how would she know if she liked it or not if she didn't give it a chance.

Away the boys, Bella and I went down the street. Fifteen minutes later, we were three houses away. Yes that was NOT a typo, three houses people... HOUSES, not blocks! Bella was barely pedaling. The boys... see what I said earlier, they are those kids! I kept encouraging and giving support.

"You've got this Bella!"

"Good job pedaling, use your strong legs!"

"Go girl"

"You've got this!! Keep going!"

"Look at you! Nice work pedaling! You are doing great!"

"Keep it going sister!"

"Deep breath in and deep breath out, keep trying"

"Mom, I'm trying. I'm facing my fears. I'm really, really afraid. I'm scared I'm going to fall. I'm afraid, what if I fall? I'm trying hard mom. I'm breathing in and out. I can do this. I can try new things." She said to me and my heart took a hit. She was facing her fears of bike riding. She's unsteady even on training wheels. She's nervous and afraid. She needs a lot of encouragement. She was getting it. All that really mattered was that she was trying. 

About that time, her dad pedaling down the street on his bike! She was so excited. He rode up to the boys and stayed with them and would pedal back down by us. Slow and steady we were getting there. All of the boys in our crew were extra patient. 

At one point she asked to take off her prosthetic and I agree to let her at the end of the street. She didn't argue and kept going. At the end of the street, she stopped and asked if she could take it off. I helped her then stuck her prosthetic arm under my arm and we both rode off. About two turns of the pedal she piped up. 

"Mom I actually think it's easier with the prosthetic. Can you help me put it back on?" I did. I was actually happy that I had pushed it a little harder than she might have liked. She realized that it helped her be more steady. It helped her to have full control of the handle bars. 

Around the corner we went, slow and steady. We pedaled back in the driveway. I stopped to tell her how proud I was of her and that she did a really great job trying so hard. She really faced her fears and grabbed the bull by the horns. I shared with her that I was so proud that even though she was afraid, she still tried. That I was really proud of I told her, for trying! 

As we parked our bikes, she had one more thing to say...

"Mom tomorrow's my birthday. Do you think we could get me a new bike?" I simply smiled. We'll see!

We have a prosthetic!

When I say we, I mean Bella... I mean it's hers but it's ours too, especially mine since I've worked my tail off on this to make it happen and make it happen right. This girl has no idea and that's a-okay. Someday, she'll appreciate me even more... or I can hope.

Today, we drove to Scheck and Siress to pick up her FINAL prosthetic. She has a terminal device and two adaptations. This means nothing to you "non-prosthetic" people. It means everything to her. She's made me promise to keep it a secret and not post ANY pictures until she shows it off at Camp No Limits, which happens on Thursday. The suspense is killing me, I so badly want to share! My promise to my girl means more than that though, so you'll have to wait. You can call her to find out more :) She loves texting, FaceTime and snapchat... all via my phone of course!

(She started young)

Thursday, Camp No Limits Idaho happens. I'm dying inside to get on that plane and go. Camp is like Christmas for me. I get to reunite with people that I love and meet new people that I'll grow to love in just four short days. It's life changing every single time. My heart grows ten fold and it's one of the happiest four days of the year for me. I hope that my kids feel the same.

Be on the lookout for LOTS of updates coming soon. Maybe I'll see if Bella wants to blog about getting her hand. We can at least post for one to release on Thursday night after all the CNL friends have seen it first :)

Upper limb prosthetic friends, be sure to bring your attachments for your sports arms so she can check them out. I can't wait to see all that she learns this year. I wonder if she'll spend any time with us at all. Usually she wonders off with the girls and I see her on Sunday to pick her back up. The joys of camp!

(My how she's changed in a year!)

So yep, in her bag, all set to go are the prosthetic parts! I'm dying on the inside that we actually have them in our house! FINALLY!

More words that hurt

Sometimes it's not what your child says that hurts you, it's what another adult says about your child.

I was talking to some other moms about the juggling at High Interest Day at our elementary school. It started out as a few moms having a conversation that lead to stinging and pain. I expressed the look on the jugglers face when "a child" walked in to juggling and I explained how the jugglers face couldn't hide his expression.

"Well you NEED two hands to juggle!"

My mind is blanking as to what my response was at this point. I mean, really I was kind of in shock. In shock that she didn't know that "the child" was MY daughter. In shock that she said that... in shock at her stupidity... you don't NEED two hands for anything actually. It would be nice to have two hands and as "that child said", it would be nice to have two hands like the rest of her family. It's for certain not a necessity.

"You CAN'T juggle with one hand"

Again, what I said, no clue. I can't remember for the life of me and it just happened today! I can tell you that ANYTHING is possible and saying I can't is not an option at our house... You MUST try. That doesn't mean that we, as the parents, won't help you. It does mean that you have to try, whether you have one hand or ten. Whether you are doing math or tying shoes, you WILL try. Failing will make you stronger and will help you to learn. Quitting is NOT an option.

My heart stung once again. The stupidity amazed me. Where on God's green earth is your filter lady? Do you not realize that I'm talking about MY daughter? And even if I wasn't, how dare you say that the child CAN'T... just because YOU couldn't doesn't mean he/she can't.

"Someone should have warned the juggler!"

I do recall saying something about me being pretty sure I never warned anyone. I mean do you "warn" people that you have blue eyes, do you warn them about your dark frizzy hair, what about the mole on your chin, or the sudden adult acne breakout? Maybe I should just put a warning label on her head... I mean Really??

My heart stung a bit, my tongue bled, my face showed disbelief, my smile tried to hide it all.

I will tell you that that the child I'm talking about is MY child, my first born, the one that made me a mother, the one that has the biggest heart, that wants to heal all pain, that wants to bring my dad back for me to see him again, the one that covers me up if I fall asleep on the couch, the one that has the sweetest smile, the most sincere thoughts, the best laugh, the snaggle tooth smile, the best green eyes I've ever seen, the one that showed me that you can love someone before you meet them, that you can worry before they even leave your body, the one that knows my heartbeat from the inside. She's mine. I CAN tell you that there's nothing she CAN'T do that's she's wanted.

She CAN: climb trees, tie shoes, do her own ponytail, braid my hair, button buttons, put on socks, go rock climbing, be a girl scout, carry things in both arms, climb, open jars, pour milk, hike, run, walk, bike, rope climb, cut steak, bull ride... the list is really endless. What I will tell you is don't EVER tell my child that she can't. That's why I'm her mom and YOU aren't.

I'll leave you with this one handed juggling on you-tube just as a reminder that ANYTHING is possible.

One handed juggling on You-tube