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!"

Tuesday, January 13, 2015

Why Camp No Limits?

(Yep this is a super old picture but look how sweet!)
A friend asked me the other day why we chose Camp No Limits when there were "so many other camps out there". It's hard to explain honestly. I just felt an instant connection with the director when I spoke with her. Mary was friendly and gave me her cell number without hesitation when I was a first time camp mom. I had a million questions about how camp would work with 3 little ones, rooming, meals, what we should bring, etc. She was kind and welcoming right away. She didn't hesitate to answer my questions and didn't make me feel like a complete idiot :)

Yes, there are other camps available. Not a ton but probably about a handful. I'm not knocking any of them or saying we'll never go to them. There is a possibility that we may some day. For me and for our family, it's important to chose something that is a good fit. Only you can decide what will be a good fit for you and your family. I say that a thousand times over when new mamas contact me asking about prosthetics, to use them or not. "You have to decide what's best for YOUR child"... that's not a decision I can make for them. It takes a lot of thinking and sleepless nights but once you decide, run with it! That's exactly what we did with camp, we picked CNL and then ran with it!

Camp No Limits felt like a second home seconds after we arrived. Everyone was warm and welcoming and we felt at ease right away. Within 4 days, it was sad to leave. You felt like you were leaving your family. We were recently lucky enough to connect with Keegan, one of the junior volunteers, on FaceTime. The kids loved it! It only reinforced our decision to go back. The friends you make at camps like this one can be lifetime mentors and friends. We've looked at our photo album from last year and are ready to dive in and make one for this year.

The countdown is on! Camp No Limits Florida starts in a few short days. Our bags are packed... or so we hope! We are ready to embrace the opportunities that this year has to offer. We are happy to see old friends and make new ones. Most of all, we are thankful for the opportunity to do this once again! Thank you to EVERYONE who has donated, whether it was a dollar or a hundred dollars, it's helped us meet our goal of going to camp yet again.

Camp updates will be posted later!!

Friday, January 9, 2015

Oh, Christmas tree, Oh, Christmas tree

My aunt posted a blog about her tree and what makes her tree special. There are blogs upon blogs dedicated in having the perfect tree. How to space the lights, how many lights to use, what ornaments and their dimensions, how many ornaments... What makes YOUR tree perfect?

Our tree is decorated in ornaments from all over. From Ryan and I dating, from our days of living in Hawaii, from vacations we took, from first house ornaments, to first baby ornaments, to baby's first Christmas, my dad's old rocking horses and santas... It's my Grandma Tootie and Papa Allan's tree. It was passed to me and it sits in the corner of our living room each year. It's massive, too big for our house. Just right for the love that fills this house though!

These pictures don't nearly show it's massive size. It's perfect for us. It fills our hearts with happiness and joy each year when we set it up. Each ornament has a meaning and a story. I can't imagine it any other way. I wouldn't want it any other way. I can't wait to pass the ornaments to our children when they are adults so they can share their stories with their spouse, their family, maybe their children. I am excited to see what new ornaments will be added next year. What adventures will our family go on? Life is about the journey, not the destination!

Bedtime stories

This is our family on Christmas Day, all dressed up and celebrating. Each night we tuck the kids into bed, we talk about whatever they bring up. It's their turn to have some one on one time with mom and then dad or vice versa. Tonight it went something like this...

Laying in bed with Bella "Mom, I'm so glad you picked my dad to marry"
"Dad, if I was an adult and wasn't your daughter... If mama wasn't your wife... I would line up all of the boys I want to marry and I would X them all out and still pick you to marry"

Laying in bed with Grayson "Mom, I love Keegan"
"Mom, why are you so afraid of this plastic lion, it's just plastic. It's just a lion. It has blood in it's mouth. It's pretend."

Laying in bed with Luca feeling something hard and plastic under my head. "Here honey, snuggle your frog"
"What's this, Luca?"

Friday, December 26, 2014

My heart just skipped a beat

I was in the middle of a job application that asked you to fill a portion on disabilities. I scrolled quickly past then stopped and scrolled back up... My heart skipped a beat, or maybe it stopped, but I'm pretty sure I'm having palpitations currently. Do you see what I see?
You are considered to have a disability if you have a physical or mental impairment or medical condition that substantially limits a major life activity, or if you have a history or record of such an impairment or medical condition.
Disabilities include, but are not limited to:
  • Blindness
  • Deafness
  • Cancer
  • Diabetes
  • Epilepsy
  • Autism
  • Cerebral palsy
  • Schizophrenia
  • Muscular dystrophy
  • Bipolar disorder
  • Major depression
  • Multiple Sclerosis (MS)
  • Missing limbs or partially missing limbs
  • Post-traumatic stress disorder (PTSD)
  • Obsessive compulsive disorder
  • Impairments requiring the use of a wheelchair
  • Intellectual disability (previously called mental retardation)

I'm not sure I understand how "Missing limbs or partially missing limbs" is considered a disability. How does this "substantially limits a major life activity"?  My heart is aching for my daughter. How is she limited? There is not a single thing that she hasn't been able to do yet. She does everything every other 5 1/2 year old little girl does. It doesn't "limit" her life or her activities in the slightest. This stopped me in my tracks. It crushed me to my core. I still can't understand this...