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


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.

Saturday, February 28, 2015

No easy task

Sometimes I pause for a second and wonder how I became so lucky to be the mama of 3 happy, healthy, beautiful babies... other times, I wonder if I can sell them to the zoo but we won't talk about that right now!

This was the first year that I've sewn the fingers to gloves closed and cut the fingers off. It was bothering her and she asked how to fix it. I came up with a solution and it works. Well today, she pulled out a brand new set and put it on. Then said this "Mom wouldn't it be funny if people said something about me having two gloves and 10 fingers and I told them they grew." I smiled and giggled with her. "Mom wouldn't it be cool if they did grow"... my heart shattered. I smiled and said "super cool". What else is a mom to say?

Being a parent is no easy task even with kids with all 10 fingers. Remember how I said sometimes I want to sell them to the zoo? Sometimes I would even pay the zoo to take them! I'm kidding... kind of.... In all seriousness though, my heart did shatter. I wonder what she really thinks when she says those things. Is she really just being a kid and playing around? Or is she really thinking, God, I'd love to have 10 fingers? Who knows. I don't ask. I let her be her, she'll say more if she wants to. I don't pry and I don't try to make a bigger deal out of something unless I can tell by her tone or expressions that it really needs to be a bigger deal. When it's your kid, you know, you just know when to reach in and dig deeper. Today, I didn't. Today, I left well enough alone. I allowed my heart to take it in and I let it go... until now, when she's fast asleep. And now, I sit and wonder, I ponder the possibilities. My heart hurts because I don't understand fully how she feels. I never will truly understand her exact feelings and emotions because I'm not in her shoes. She will never fully understand my feelings as her mother because she's not in my shoes. I remember telling my mom and dad after I had her how I finally understood how much they loved me and how their heart was always beating outside of their chest. I didn't fully understand their love until I became a parent. Don't get me wrong, I knew they loved me and would go to the ends of the earth for me. I fully understood the depth of those feelings when my eyes first saw her tiny body.

I struggle sometimes with my feelings about her feelings. I know some day we will talk about it more. I have faith in her and confidence that she will express her needs and desires. She's like her parents that way, outspoken and bold... that can be good and bad! I have no doubt in my mind that she will tell me if she needs something from me. Until then, I'll just be her mom. I'll continue to encourage her, provide her support, build her confidence and allow her to grow.

Saturday, January 24, 2015

Thank you!

I'd like to pause for a moment to say thank you... THANK YOU! To each and every single one of you for reading our blog and keeping up on our lives, for donating, for listening. I hope this blog helps you or your family in some way as well. I started this as a way for us to get to Camp No Limits. It's grown into something more. It's grown into a way to connect, a way to share memories, a way to help other families as well. I've been contacted by a few moms and I'm happy to help in any way that I or that we can. It's a blessing to be able to help other families, to share what we've been through, the challenges we've faced and the joys that have come.

This blog allows us to connect to each and every one of you. If you have a question or there's something you'd like me to address, please leave a comment and I'll do my very best.

Thank you for allowing our family to attend camp again, to build friendships and gain confidence! I'm just a mom doing the best that I can for my daughter and our sons.

Monday, January 19, 2015

Camp No Limits

It came and it went, just like that. It's too short, it's too fast. Just like life. We were so lucky to attend Camp No Limits again this year and we received the JIQ scholarship. It was a giant blessing to attend again!

We drove straight from the airport to the Clearwater Marine Aquarium, which is home to Winter the Dolphin. We had some baggage issues at the airport so we ended up meeting everyone a little late. We started seeing prosthetics, missing hands, missing legs, crutches, Camp No Limits shirts and most of all, warm, welcoming smiles. Some familiar faces and many, many new faces. You can always tell the group though, people are smiling and happy. It's truly a family. Watching Winter was awesome but the highlight of the aquarium this time was the stingray experience. She touched them last year but this year she didn't want to leave that area. She LOVED it! We had dinner back at camp and some introductions. We ended the night with an animal show. Luca and Bella held an alligator! I didn't even watch to touch it!

Day two started with breakfast and energizers. We were part of the flubber activity, which helps to encourage children with upper limb differences to use both arms to do things. It may seems silly to some but it's very beneficial. It's sensory and helps encourage muscle movement in BOTH arms. There were support groups for parents and activities for all of the kids. I'm pretty sure I barely saw Bella all morning! After lunch we went tree climbing! Bella got harnessed in and up the rope she went. She had no problems, no limits! It was incredible to witness her ear to ear smile, I swear you could see her glowing. It was also incredible to witness the other children there. I had to laugh because the instructor kept saying "Use both hands"... I'm pretty sure it was part of his speech but I wonder if he realized that 90% of our group at that time didn't have "both" hands! To watch the courage and dedication of these kids will never cease to amaze me. We polished off the night with a campfire and s'mores! Bella and Luca fell asleep in the stroller on the way back! Grayson was quite crabby from all of the action all day but fell asleep as soon as he hit the bed.

Day 3, she left with Jimmy and his mom, Tina and then left breakfast with them when we got there. We did energizers again and some more skills and playing. The boys went to the sibling group, which was really helpful. Ryan and I were really able to focus on learning to tie shoes with her, Isaac (on OT), Keegan, Kari. We decided that the boys should really have a nap so Ryan and Bella went rope climbing and kayaking and I did some homework (ah grad school!) while they napped. I may or may not have closed my eyes too :) When they woke up, Ryan took Grayson kayaking and I headed to bikes with Bella and Luca. Jimmy helped Bella adjust the seat (that's a true 4 year old gentlemen!). Bella took off around the trail with Janey, an incredible PT then with Keegan. We ended the night with a slideshow that would bring any person to tears. Then they danced! Parents danced along with all of the campers and their siblings. It was so fun to watch them all be so carefree.

Bella really stepped out of her comfort zone. She got harnessed in, climbed trees, climbed ropes, kayaked and biked. Most of all, she reconnected with old friends, made deeper connections and welcomed new campers by making new friendships. As a parent, it's weird to have your five-year-old say "Mom, I'm going with Jimmy, see ya later". "Mom can I hang out with Katie and you can do whatever?"  She was ready and willing to just jump right in!

To watch how much these kids grow in 3 days is nothing short of incredible. Their self-confidence, the skills they gain, the friendships formed and the family that is built. I could seriously cry just writing this blog and thinking about it. On our way back, Bella talked about how her and Jimmy had "almost the same hand", about how much she loved Katie, how everyone helped her tie her shoes. The friendships that you build at camp are friendships that last a lifetime. She hugged everyone goodbye about 10 times. Luca hugged people and so did Grayson. My heart was bursting.

What made this Florida camp different than last year? We weren't the "newbies", we were comfortable there and we were ready and willing to welcome first time campers to the Camp No Limits family. There were endless volunteers, PT and OT students that really embraced this opportunity, their heart and souls were engulfed in the experience. It makes a HUGE difference to have these students and mentors there that can help our daughter.

How do you know your child enjoyed camp? They say this:

"I wish we could live at camp all year and not have to miss all of our friends!"