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? 

Friday, May 15, 2015

Motherhood



It wasn't until I became a mother that I truly understood or appreciated how my parents felt about me. I don't think it's something you can ever fully understand unless you become a parent yourself. I have a different appreciation for my parents and the decisions they made. I remember rolling my eyes at them and many times thinking they were nuts for the decisions they were making. Truth of the matter is that they were just doing the very best they could in that moment. Could they have done better? Maybe, but who am I to judge. Could they have done worse? You bet! I'd like to think that I turned out okay and I'm sure they think they did a decent job too.

I can tell you this, that each time, my newborn was put into my arms, my heart exploded with the love I felt. I remember driving to work and talking to Bella in my stomach about all of my hopes and dreams for her. I remember being thankful that my body had the ability to carry a child. I wouldn't trade carrying those kids inside of me for anything in this world. As a parent, we have high hopes for each of our children. My hopes and dreams for each of them is happiness. I don't care if they chose a specific religion or career path. I don't care if they chose a same-sex partner for marriage. I do care that they are happy. That they are kind and considerate to others. That they are compassionate and open-minded and respectful of other's beliefs. It is not our place to judge.

I know for a fact that my parents did the very best they could in each of the moments they were given with me. They have encouraged me and supported me. I pray that my children find me supportive and encouraging of their endeavors. I hope that when they become adults they will still love and cherish our relationship.  I hope that they will someday understand that I am making the best decisions that I can as a mother for them. 

Today, I'm thankful that I was chosen to be the mother of these three gems. Some days (MOST days!) they push me to my limits. I would be lying if I said there weren't days I was counting the hours until bedtime. I would also be lying if I didn't say there were days that I didn't miss snuggling their tiny naked little newborn body against my bare chest. Someday, I will miss the messy faces and floors. Someday, I will miss the madness and craziness. Today, I'll embrace it! Today, I'll be thankful that they each want me to crawl into bed with them and "Nuggle" or talk about our day. Today and every day, I'll be thankful that they are mine and I am theirs.

Thursday, March 12, 2015

The middle child

This blog initially started out all about Bella. I once made a better attempt to keep it that way and continued to keep my own private blog. I still do keep that blog but I also think it's important to realize that my other children do not get neglected because of Bella. I debated writing this but this is us, this is real, this is our life.


Four years ago today, our second child, our first son entered this world, who is also now a middle child. I have a hard time admitting that I can't remember much about his birth. It was a world wind time in our lives. I do remember crying during my labor and yelling that I could not do this and I just wanted a c-section. That was not the way he wanted to enter the world. He came in at a whopping 8 lbs 11 oz, 3 whole pounds more than his sister! I remember is brown hair, and them plopping his little body onto my belly, something that didn't happen during Bella's birth. I remember the immense amount of love that filled my heart. I remember feeling proud that I could love two children equally, something I initially feared.  I was blessed beyond words, one daughter and one son, I knew there would be more at some point in time. I knew in my heart he would not be our last. 

He was the easiest baby! The polar opposite of his high strung, nosey sister. From day one, she hated sleep as if it were the devil. She would fight it tooth and nail. She needed constant motion and stimulation. I would put her in the Moby and walk the block to keep her quiet. Not Grayson, he was chill as a cucumber. Cool and calm, mellow. He slept! Sweet baby Jesus there was a GOD! 

He was and still is a clown. A smile that lights up the block. His laughter is contagious. He's sweet and mellow most times. He's sensitive and stubborn too. He has a heart of gold. He's constantly thinking about someone else and what he can do to help them. When Bella is at school and we leave to do something fun, he verbalizes how much he wishes she was here to go with us. We went for donuts this morning and he picked out the donut that he knew would be her favorite, pink icing with sprinkles. He lives for the minute she comes home from school. At dinner, he snorts like a pig and makes us die laughing. His pig snorts are the best!

He's a boy through and through. He loves the cottage, being sweaty and toads in his hands. He hunts for worms in mud piles and carries them around forever. I'm surprised I haven't found one in a pocket when I do laundry! He used to call them "nakes". He loves holding little bugs or critters so Luca can see them. Luca is a bit more timid when it comes to live animals. 
Happy birthday my sweet son. Happy Birthday, Grayson John. Words do not do justice for the amount of love my heart holds for you. Your calm, go with the flow attitude is just what this family needs. Your big cheesy grins and pig snorts at the table, they make me laugh so hard my belly hurts. I love you to the ends of the earth my handsome son. I love your cuddly nature and your love of back rubs. I'm happy to cuddle with you or rub your back any day of the week. Thank you for reminding your busy mama to slow down, to enjoy these moments. You help me remember that they will be gone before I know it. There will come a day when you don't want me to climb up on your top bunk and sing to you while rubbing your back. Until then, I'll continue. I love you Mr Moose! 


Tuesday, March 10, 2015

Death and dying and PaPa John

"Mom, the doctors are suposed to fix you. How come they didn't fix your daddy?"

That's a question Bella has asked me many times and yet I still don't have an answer that seems "right". Today marks the 4th anniversary of my father's death. Bella is the only child my dad got to hold in his arms, play with, skype with and watch me parent. Today, is a better day for the first time in 4 years.

"Mom, people should die of old age. Your dad wasn't very old."

"Mom when you die, can you be turned to ashes so I can keep you on my dresser like you keep PaPa John on your dresser."

"Mom, do you talk to PaPa John sometimes?"
"Mom will we ever see your daddy again"

"Mom, I had a dream about your dad last night. He was helping us fix things at our house"

"Mom, I drew this picture of your daddy so you didn't have to miss him and you could remember him"

"PaPa, see him? Touch him?" *as Luca points to the ashes in the jar on my dresser*

"Mom, tell me about your daddy"

"Mom, I'm sorry that you are sad and miss your dad. I'm sorry that your dad died"

"Mom my middle name is John just like my PaPa's name"

"Mom can we talk about your daddy?"
Ah the questions... they come up at random moments, usually when I'm least prepared to answer them or when my heart feels ok. The emotions flood my body each time the kids bring him up. Please don't cry, be strong, I tell myself. PULL IT TOGETHER! Sometimes I do, sometimes... well sometimes, not so much. My body no longer shakes when I cry and when I talk about him to my children. I'm able to look at pictures of him and talk about him more. I'm able to share stories more frequently about what he was like, what he loved, what kind of daddy and person he was and what he looked like. Sometimes the tears roll down my face when we talk about him, usually my children wipe my tears before I have a chance to wipe them myself.

My children know more about death and dying then I ever thought they would. It breaks my heart that this is a normal thing in our house. It's reality though. Anytime PaPa John comes up we talk about how he lives in Heaven and watches over us and how he sees all that we are doing even though he's not here. We talk about how we can see him in our dreams and sometimes even touch him, how he lives in our hearts and sometimes we can feel him around us. It's life as a mom who's dad passed away far too early. Life is not fair. Until we meet again, I'll keep his memory alive through my children. I'll feel his breath in the wind on my face.