Monday, August 31, 2015

I see you staring...

In one way, I get it, people stare, they are curious and not sure what to say or do. When it's kids, I'm more understanding. Kids are growing and curious. It's our job as adults to educate them, to talk to them about why they are staring and get them engaged. I find myself often saying "Hi, I'm Sarah, Bella's mom, how are you?" Usually it pulls the child's attention away from my child and onto me. Usually that's when I get "What happened to her hand?" My response is always "She was just born that way. What questions do you have about it?" Sometimes kids ask more questions and sometimes that's the end of the conversation.

Today is Bella's last day before starting first grade. We went on an adventure to a park she loves that's about 30 minutes from home. We packed lunch and were ready to enjoy our day. The kids were all playing and I could tell by Bella's face she wasn't comfortable. I stayed close by. I noticed the same thing she noticed, four little girls staring and pointing. I asked her if she played with the girls yet. She hadn't. I asked if she wanted to, "Kind of", she said. "Go ask them to play!" I tried to sound excited. She didn't want to. She never ended up playing with them. I talked to them for a few minutes, no one mentioned her hand. I didn't either. Maybe I should have...

A bit later, we ate lunch and were back to playing. My senses may have been a bit heightened. I may have been a bit on edge. I saw a grandma of two little girls staring and pointing while talking to the grandpa. I approached her, Bella came with. The grandma shoed the girls off to do something else. I wanted to say "I SAW YOU STARING!!" I wanted to educate her. I wanted to get angry. I wanted to ask her how she would feel if someone was staring and pointing at her or one of her granddaughters. I didn't. My goal is never to isolate my child, so I didn't say anything. If Bella had not been standing next to me, I would have said something nicely. Instead, I let it go.

My feelings were hurt for my child. Not only does she encounter curious children. She encounters adults who are idiots. Adults think she doesn't have attentive parents that are watching what they are doing. Adults who think that staring is okay. My feelings were hurt for me too. How could another adult be so insensitive? I'm learning every day how to be a better mother. Motherhood is no joke. It's not for the weak or wimpy. It's a challenge Sometimes I rock the shit out of it, sometimes I fall flat into the mud, sometimes I'm in quick sand all day.

Bella kept wanting to leave but wouldn't tell me why or wouldn't talk more about anything. I asked her why, how she was feeling, what was going on, she refused to answer. She is her mother's daughter for sure. We stayed, we played. Along came a little girl in a white tank top. She was a third grader she told Bella. She and about 5 other kids played a congo line on a tight rope, Bella and both boys played too. She was kind and friendly. Bella didn't want to leave. She was having fun with this little girl who took charge.

I walked over to a group of mother's and asked which one was her mother. One said "Oh no, me why?" I told her of our morning and I commended her for raising a child that included all of the kids of all ages in her play. I told her how Bella's attitude changed because of her child. She thanked me and we talked a bit more. She, like me, is a mom of three. She has good days and bad days she said. I told her I just wanted her to know she was doing a great job. We enjoyed chatting until our kids interrupted her. I felt good about commending another mother. Motherhood is no joke. It's a challenge

Friday, August 28, 2015

"That's cool"

The same day we were at the park and the incident happened, something positive also happened. Bella had been playing with the girl who was scared and another little girl came up.

"What happened to your hand?" she asked.

"I was born this way" Bella responded

"That's cool!" she said and her and Bella went to play...

Just like that something negative had happened and then this happened. I try to be more of an observed and let my kids handle situations on their own. Then if I need to, I can step in.

As we loaded into the car, Bella said "Mom a girl at the park called my hand COOL and that's NEVER happened before, it was AWESOME! That's the first time anyone has every said my hand was cool!"

"Wow, seriously?! that is AWESOME! " I looked back from the front seat with a smile. I was fighting the tears. This little girl had no idea how she made my daughter feel. She had no idea that she left a print on my daughter's soul that will forever remain. I wanted to get out of the car and hug that girl but instead I drove away with music playing. Bella had the biggest smile on her face.

As we tucked her into bed that night, she mentioned the little girl who called her hand cool. "Mom that was so awesome that she thought my hand was cool. No one has ever said that before!" We talked about how it made her feel and how the little girl thought she was cool because she was different. She went to bed smiling and thinking about her positive experience at the park.

Life is funny like that. I constantly try to remind myself that I don't know the battle that others are fighting and sometimes saying hello or smiling could make someone else's day. This little girl made my Bella's day!

*Stay tuned for more to come on us fundraising for a little guy named BRANDON to go to Camp No Limits*

Wednesday, August 26, 2015

Back seat blogger

I have no excuses, only reality. We've had an insanely busy summer and the blog for Bella has taken a back seat. I'm a mom first and foremost. I'm also a pediatric nurse, a clinical instructor, a full time graduate student, a wife, a dog owner, a crafter... wait I was a crafter... well anyhow, it's been busy! I'll catch you up on the rest of that stuff later!

Bella starts first grade in one week. We had a meet the teacher night tonight and I loved her teacher. I'm excited that she is in class with some of her best buds. I'm thrilled that she's over the moon about going back to school, learning more and seeing her friends again.... her words, not mine! Her first grade teacher said her kindergarten teacher described her as "super confident and does everything the other kids do". I loved her kindergarten teacher too. Kindergarten went off without a hitch, no major issues with her limb difference camp up. Her first grade teacher and I decided it would be best for me to come chat with the class the first or second week of school. I'll let you know how it goes. Maybe I could video it if anyone is interested. Let me know what you all need and want!

This summer was great, busy and hot and just the way we like it. I'll fill you in on all of that soon, promise! I do want to share an experience we had at the park just this week while it's fresh in my head. We went to a local park that we frequent and there was another family there, a mom and dad and two girls, ages 8 and 4. I said hi and we all went on our way playing. The boys climbing a giant spider web thing and Bella heading for the balance beam. Less than five minutes passed and Bella went to ask the older girl "Do you want to play with me?"

The girl covered her face and crunched up her eyes and didn't say anything.

Bella repeated "Do you want to play with me?"

The girl continued and up popped the mom. "Honey what's wrong?"

"I'm scared of... I'm scared... I'm scared of her hand" said the 8 year old.

"You don't have to play with her if you are scared of her" the mom said as she walked away with her child.

I stood by. What I really want to do was throat punch the mom for not taking the opportunity to teach her child about differences and that there was no reason to be frightened or afraid. It's not like Bella was going to hurt her or the girl could catch a disease from her. For the love of Pete, TEACH YOUR CHILD lady! Yet still, I watched. Thanking God that my mom wasn't around or a throat punch wouldn't have been second guessed by her!

Bella and the boys played on the spider web, the balance beam and the monkey bars. I had visions of Emergency room visits and broken bones... ah the joys of being a pediatric nurse. I can't put my kids in a bubble even though I'd like to sometimes. I helped the mother's 4 year old across the balance beam, because it wasn't the kids fault her mom was a moron and she asked for my help. With a smile, I helped each kiddo across the beam, each of mine then the other mother's daughter.

Bella approached the older girl again... because really who doesn't love a little pressure :) "Do you want to play with me? You don't have to be scared of my hand. I was just born this way. I can do everything you do. You don't have to be scared, let's play!" My child stood there smile, educating, welcoming, lovingly embracing this girls fear over something my child had no control.

"You don't have to play with her if you are scared honey" said the mom. The devil was standing on one shoulder begging me to donkey punch this mom in the gut, while I'm pretty sure my dad was standing on the other telling me to chill and let my daughter handle this. The 8 year old turned to her mom and smiled and off she went with Bella. At that moment I was thankful for sunglasses, thankfully for my ability to hold back my tears, tears of sadness and joy, thankful for the distraction of having two boys that were at the top of the spider web giving me a heart attack.

I stood away from the mom and the dad. I played with my kids and theirs while they sat on a bench watching. I helped their daughter across the balance beam more times than I can count. I laughed and chased them all. I played tag. I had self-control, I'm proud of myself for that! Those that know me, know I often speak my mind.

As I helped Bella across the monkey bars, the other mom stood up. "Wow SHE can do the monkey bars?! I'm surprised!"

"Don't be" I said with a smile, "She can do everything your daughters can do. Don't be surprised" I continued to help Bella across the monkey bars. I looked at my green eyed girl "Right B?"

"Right mom!"

I didn't donkey punch her, I didn't throat punch her.  Education is my first priority. I'm sad I didn't educate her more, although it this situation, I needed to hold back my words of anger, irritation, sadness and frustration. I'm proud of myself and my husband. We have given our daughter confidence and courage to speak up to others. She was not ashamed. Instead, she educated! I'm proud of Bella for having the words to express, a heart of gold and a mind of determination!

Friday, July 24, 2015

Happy Birthday Lady Bug!

This girl made me a mother exactly six years ago today. I longed for the day I would have a child of my own. I remember being a young girl, about the age she is now, playing mama and babies. In my heart, I knew the thing that would make me happiest would be to be a mother. I wanted her before she grew inside me. I loved her from the second we discovered we were having a child. Nothing could change my mind, nothing could make me love her more or less.

A little piece of my heart walks outside of my body with each of my children. I remember rubbing my stomach and talking to her when she was growing in my womb. I remember reading to her and singing songs to her. I wondered if she would recall my voice when she came into the world. I remember telling her how I loved her and would protect her, how I would be her best friend and her biggest cheerleader, how I couldn't wait to hold her in my arms.

When my water broke five weeks early, I knew she was in a hurry to meet us. I knew she would take on the world head on, she would be a fighter, she would be brave and secure. I sat on the floor and continued to unpack, we had just purchased our house a couple of weeks earlier. I remember crying and panicking. Would she be safe? Would she need a NICU stay? Why was she coming so early? Didn't she know we didn't even have her room together?

It was fast and furious! Getting to the hospital, waiting for test results, calling the NICU, close monitoring of me and her during labor. Nothing like how I expected or plan to give birth, that all went out the window when my water broke. My plan now was to keep this girl and myself safe. We did just that. Twelve hours later, a little dark haired string bean baby was born and immediately placed on the warmer. Her daddy held her fingers and talked to her. She was calm and observant, her wide eyes looking around. She was beautiful. I watched them both in awe. How could I have loved this baby so much more now that I saw her when I already loved her so much? How could I fall in love with my husband a thousand times over again?

Today, six years later, she is all of those things I expected. She is fiery and feisty, sassy and secure, brave beyond words, she is a lover of all, an educator to those she meets when they ask about her limb difference, she is patient and kind. I admire her ability to not take offense when people stare or ask questions. "Mom, they just don't know and I have to tell them"she says when they stare or ask the same question over and over. She knows when to ask for help from adults in these situations, she knows when to walk away and she knows when to ask for space from people touching and looking too much or too long.
(This is her showing you that she's six)

I'll continue to love and support her in any way that we can. We have a network of support throughout our community and throughout the United States. We are blessed beyond belief to have the friends and family that we do. We are lucky to be able to reach out and ask "how do you help her ride a bike?" or "Can you show me again how to help her tie shoes?" (Which by the way, she mastered after Camp No Limits earlier this year). I feel more confident and calm as her mother (and a mother in general!) with the systems that we have in place to help us along the way. These people help us learn and grow and be better. 

Today for her birthday, I'm asking you each to consider donating a dollar to our paypal account so that we can go to camp next year. I have over 700 friends on Facebook, if each of them donated a dollar, that would allow her fees to be paid for next year at Camp No Limits. Share this with your friends, with your friend's friends, your coworkers, your network of support. Camp No Limits is a large network of our family, our friends and our support. Each year we go, we learn something new and she gains more confidence. Please consider supporting us on our journey to attend camp again in 2016!

You can find our paypal link on the side bar of the page. Thank you for considering her on her day!

Monday, June 22, 2015

Father's Day

This is us a few weeks ago on our first camping adventure as a family of five. The only mishap was a small hole in my newish tennis shoes from a toasted marshmallow. This is us at our finest, all squished together with food in mouths and hands, dirty faces, unwashed hair, smelling of bug spray and sunscreen and sweat! We are happiest together on adventures. This is my life that I love. This is the man that made me a wife, that gave me these children. This is my husband and the father of my loves. I knew something was different about him when we met but I didn't know exactly what it was. I'm still not sure what it is about him that still gives me butterflies.

Ten years later, many moves, four states, a baby girl, a miscarriage, two baby boys. This is the man that I call mine. He pushes me to be the best me, the best mother, friend, nurse, teacher, student. He encourages me to reach for the stars, to soar through the skies. To embrace life at every turn. I loved him years ago, I love him still, each day I love him more.

My children are blessed to have him as their father. He's hands on. He's rough and tumble. He creates crazy games. He throws dance parties. He talks in silly voices. He tells them he loves them but more than telling them, you can feel it. The love he feels for his children is palpable in the air. You can feel it all around him, all around them, all around us. He shows them he loves their mother. This is the man who guides our family and lifts us up.

I have no doubt that Ryan will be our children's biggest supporter. He will be standing by their side through life, cheering them on, encouraging them to try something new, to take the next big adventure. He will be there for them during good times and not so good times, just as he has been for me. He will lift them up when they are down, lift them higher when they are high. His positive energy is a rarity these days. He will be Bella's first love and he show her how a man should treat her.

Happy Father's Day my love!

Tuesday, June 2, 2015

Karma at it's finest

I'm not sure that is the appropriate title for this post but it is what it is for a reason. I was recently told that maybe Bella's fingers didn't develop due to "bad karma" or something I did or didn't do in my past. I held back wanting to slap the person in the face (with a chair) and instead left them with a website with more information. It's hard to refrain sometimes but I gave myself a pat on the back for educating them instead of spending the night in jail away from my family.

Let me share that education a bit here. There's nothing I DID or did NOT do during my pregnancy to cause this. Trust me, I researched more than I care to admit. I talked to a pediatric orthopedic surgeon... okay but I didn't talk to one, I talked to multiple. We did see one during my pregnancy and after Bella was born. I talked to a pediatric plastic surgeon. I saw our pediatrician. I asked on multiple limb difference boards... I spent HOURS upon HOURS researching. What if *I* caused this? I was assured and reassured that there was nothing I did or didn't do to cause this. Could it have been the chips and homemade salsa I survived on for 2 weeks straight? Nope they said, it wasn't.

Bella has a condition called symbrachydactyly and the cause is officially unknown. While that sucks when you are a parent trying to figure out what on earth happened. It's also reassuring that there is a community or a family of other parents willing to help you and be there for you. They've "been there, done that" if you will. It is believed that it is caused during 4-6 weeks of pregnancy due to an interruption in blood flow. Many people don't even know they are pregnant at this stage in the game! In our cause, we knew at 4 weeks. We had been trying to get pregnant for some time, so we found out right away. By the way, finding out at 4 weeks means that your pregnancy feels like it goes on for a century.

She doesn't have amniotic band syndrome. Although early on, some doctors stated that she did... Maybe because they couldn't pronounce symbrachydactyly or write it :) If you do a quick google search you can learn the difference in the two. ABS usually effects other parts of the body as well as a limb. We were lucky that she was a perfectly healthy baby girl with 5 fingers missing, nothing short of perfection in our eyes.

As a I mentioned earlier the community that surrounds you, a google and Facebook search lead me to boards and discussions. It lead me to Camp No Limits, Born Just Right and The Lucky Fin Project. It surrounded us with parents that were there for us and supportive. They answered my crazy questions at 1am. They listened to me voice my concerns and assured me that everything would be fine. They were right.

Five 1/2 years later, things are better than fine, things are great. Our girl is not only surviving, she's thriving. She's doing incredible. She's reading books, she's tying shoes, she buttons clothes, she zippers her coat, she even makes her own sandwiches... now only if she could learn to pick up her room :) I want you all to know that I'm here for other families as well. Reach out to me! I'll answer you, I promise. Find me on Facebook, message me, I'll do my best to help you.

Friday, May 22, 2015

Things you should know...

While cutting cilantro the other night, Bella said "Can I do that?" 

"Sure, go ahead" and I passed her the scissors.

"Mom, I can't do it like you because I don't have two hands, I can't hold the cilantro with one hand and then cut it with the other" something I rarely hear her say... she can't do something because she doesn't have two hands....

"Wait, I can do anything I put my mind to" and away she went, she pushed all the cilantro into a pile and used the scissors to cut it and then pushed it again and kept cutting... and so it went. 

"See mom, I can do it just like you said. I can do anything if I put my mind to it."

She's five and she sure can. She can do anything she wants! She might do it different, she might not do it just like you, she might not do it the way you would think she would. There's nothing I can say that she can't do... ok wait, that's a lie, she can't do monkey bars... YET! She's working on it. She's a little nervous when it comes to hanging from a bar too many feet from the ground (she *might* get that from her mama!)

Things I want you to know about her:

She was born like this! 

Symbrachydactyly occurs in 1:30,000 to 1:40,000 children. 

She does not have amniotic band syndrome. 

She can do EVERYTHING other kids her age can do, she does them her way. (Don't most kids do things their way?)

She can cut paper. She holds the scissors in her right hand and moves the paper where she wants it with her left hand. 

She can use a fork and knife.

She can cut paper with scissors.

Her hand doesn't hurt her.

You can hold her hand. 

She doesn't have a disease and you won't catch anything from her just because she doesn't have fingers.

She's working on riding a bike (she's a little nervous about falling off and hurting herself, but I was the same way).

It's not heriditary or genetic (meaning it's not passed down from her parents to her). 

She doesn't mind if you ask questions. She doesn't like when people continuously stare or continue to ask questions. A few questions is okay but then it gets to be too much. 

She doesn't like people to grab or examine her hand. Would you want someone grabbing a part of your body and examining it without your permission?

She's a normal 5 year old kid and she wants to be treated like one. 

She doesn't want to be known for her limb difference. WE don't want her to be known for her limb difference.

She knows about this blog and she likes it. She likes that it helps her get to Camp No Limits! 

She knows that people have raised money for her to go to Camp, she knows that strangers have donated money. She likes to hear about the people who donate and what they say. She gets card from one man that has donated and she LOVES it :) Nothing like snail mail to make a kid's day!

She knows that the goal of raising money is to go to Camp No Limits AND to raise awareness ("tell people about") limb differences. 

She talks about her friends that are born like her. 

We don't like to say "God made her this way" because we don't want little kids to be angry with God. It's just our thing. We just say she was born that way. 

She doesn't want you to be afraid of her or her hand. 

She loves making new friends. 

She loves getting on Facebook to see her "friends that were born like her" and her "camp friends".

She's loves Facetime! 

She gains confidence from Camp and knows that people there help her. 

She can bathe herself without any help from us. 

She loves climbing and parks.

She loves glue and crafting and card making. 

She doesn't like people to talk about her hand without her as part of the conversation. 

She can zip a jacket.

She can get herself dressed. 

She can ALMOST do her own ponytail. 

She can fasten a belt. 

She's just like any other 5 year old girl.

What do you want to know if she can do? What else can we do to help you understand or answer questions for other kids or your kids?