Today is a big day at our house! ALL of the kids will be in school. While I know there are mamas who sit and cry in the corner over their last baby starting school, I'm not one of them. I get it, I really, really do. I empathize with you but I will not be the mama sitting with you.
While I get that your last baby is going to school, I'm embracing this phase in our life. I've embraced each phase as it's come and as it's gone. I realize my days of spending all day with my last baby are done, I get to celebrate and appreciate him a whole new way.
Luca is beyond ready to start kindergarten. I've been told before that he needs the stimulation. He's quick to learn and loves making friends. Heck, after less than a day, he learned to tie his shoe. I think he'll pick up the school routine quickly. Maybe not easily, but he'll get the hang of it quickly. The morning bustle, the getting on the bus, getting off the bus, finding his way, meeting new friends, embracing a different kind of routine, then coming home and all that comes along with end of the day stuff.
A new school year means new things for everyone. It means seeing old friends. It means welcoming and making new friends, which we've already accomplished this summer! It means new schedules, fresh lunches, routines, schedules, new teachers, new classmates. It's really exciting. I try to build up the excitement a lot at home, especially about how amazing their teachers will be. I really value and appreciate our teachers, which is another story.
Mama starts a new semester today too. It's hard to believe I've been teaching full time for almost 3 years. With each semester means changes as well. A new student group, a new schedule, new colleagues and old friends. I get a "fresh start" with each new trimester, it's kind of exciting and fun in my opinion.
I've asked Bella about talking to her class. I've done this EVERY YEAR since kindergarten. Here's the thing, this year I asked and she asked to wait and see.
"Mom I mostly know every one. I mean there are 3 new kids but let's just wait and see how the first day goes."
While I died a little inside, I watched her sweet little face. She was confident and strong. She was brave and happy. She is growing up and she's becoming more certain of who she is and what she wants. This makes me one proud mama. I'll keep you all posted on her final decision in the days to come!
Showing posts with label emotions. Show all posts
Showing posts with label emotions. Show all posts
Wednesday, September 5, 2018
Thursday, February 8, 2018
I watched her sleeping
I got in bed late, as usual and looked over at her. Peacefully asleep on her daddy's pillow. Her long lashes rested on her cheeks, her whispy hair all over, her bunny next to her, all the covers kicked off. I watched her, I soaked her in. There next to me, lay my eight year old daughter. No longer a little peanut but instead a beautiful little girl took her place. Tears begin to softly roll down my cheeks. I couldn't shake the way I felt as I lie there and soak her in.
I remember being pregnant with her, wondering what she would be like, how she would grow, what her life would be like, what kind of person she would grow to be... so many what ifs.
Today, I watched her as the tears rolled down my face onto my pillow. What a sweet soul she has become, always looking out for those around her. Always protecting her brothers and looking out for them. The other mother in our house. A bit of a worrier, a wonderer, sensitive, yet strong and stubborn, sassy but sweet and kind.
She patiently worked with Luca at the pool this passed weekend until he knew how to swim underwater at the tender age of four. She held her arms out as he jumped to her, his net of safety. She pushed him back to the stairs with the encouragement to try again, and again... and again. She tossed a toy to the bottom of the pool, went under, pulled it then explained the process to her little brother. She coached him on how to do the same thing, she reminded him that she would be right there. I didn't interfere, instead I just watched. I watched as she had the patience of a saint teaching her brother how to be just like her, swimming freely in the pool.
How was I so lucky to be this sweet girl's mama? How was it that 8 years had passed? How was it that now some of "what-ifs" were answered?
My dear girl,
You make me proud. Your kindness shines. Your laughter fills a room. Your warmness welcomes anyone to become your friend. I am proud of the sweet girl you are becoming and the way you treat those that are so lucky to be in your life. You guard my heart and are always thinking of how I'm feeling. You constantly remember that my dad died and how hard it must be for me without him. You are pushing me closer to God and pushing me outside of my comfort zone. Sometimes even grown ups need a push!
So you struggle with math, you get frustrated. My dear, life is not always easy. You pick yourself up again, you try again with all your might. You'll get it, be patient. I will always be her to pick you up and help you fight. You'll get it, we'll get it.
Know that it's okay to cry, for sadness and for joy. It shows that you have emotions and feelings. Life is all about expressing that to others. Showing them that you care, telling them that you love them and reminded them how happy they are. As I've said time and time again, I'm lucky to be your mama. I'm glad you are my daughter. There's no other daughter I would rather have in this planet.
As you grow, I wish you love, love like your daddy and I have. I wish you peace in your life, time for yourself and taking care of you. Peace when you feel overwhelmed or are hurting. I wish you friendships, like the friendship GG and mama have, an unending friendship that's there for life. I wish you happiness, like the happiness that I get when I'm reading with you at night. I wish you strength, strength to keep fighting, keep pushing, keep giving all of you to your life. I wish you adventure, the kind of adventure that makes life really worth living, the ones that make memories that last a lifetime. Money can't buy you happiness or peace, but adventure sure can!
Spread your wings my sweet child. I'll keep watching you soar!
Tuesday, November 28, 2017
Giving Tuesday
Giving Tuesday kicks off the season after Thanksgiving. According to the Giving Tuesday website, it kicks off the "charitable season of giving". This giving tuesday, I'm asking you to really think about the organization that you pick to donate... that is if you do. I'm asking you to give mindfully not mindlessly. Many organizations take our money and very little goes to the actual cause. It bothers me to think that money I have given in years passed does not 100% go to the cause I am supporting.
The organization that means the most to our family today and every day is Camp No Limits. As many of you know, we attend camp every year. If we could attend every location, we would! But alas, work, school, life and finances for travel get in our way. Camp truly makes our year brighter. While we only attend once a year, the friendships that we make through camp last a lifetime. The support and love carry us through to the next time we attend camp. It's like having a family that supports you and lifts you up when you meet struggles. The kids and families that we meet through camp change our lives.
I'm asking you to consider giving to Camp No Limits or give to our fund for travels to get to camp. Last year, it cost us over $3200 to get to camp, between airfare and rental car amongst other things. That said, it was worth every penny. I will continue to work my tail off every year to make camp a possibility for our family. Without the help of you and others like you, we would not have been able to attend camp. Last year, we received a scholarship to pay for camp and we only had to pay the $3200 to get there! That's a HUGE blessing!
If Giving Tuesday is not your thing, no worries, I'll simply ask that you spread awareness. Spread awareness about Camp No Limits, spread awareness about limb differences, share our names with others so that I may help another family that is in our shoes, so that I can help them advocate for their child, so that I can be the support that they need, so that camp can be the family that they need, so that they can be aware of the many people that are in their shoes!
Thank you for considering. Thank you for following our blog, for listening to our stories.
Monday, October 30, 2017
Day Made
I've posted time after time about struggling. Tonight, the house was a wreck, we were running around like usual. Homework, chores, baths, cleaning, laundry, lunches, reading, bed. We try really hard to make bedtime a priority. Each kid usually gets a chapter read to them (In Bella's case) or a book (for the littler guys). I say usually because sometimes it just doesn't happen.
I climbed in bed with Bella to read to her. I finished her chapter and we were talking. We were laughing and snuggling. She said "You are the best mom ever". I told her how much that meant to me and how that was the very best part of my day. I told her how I really appreciated her sharing that she felt that way with me. "You really are the best mom ever". My heart was full. My mind was calm.
These are always the moments that I'll never regret spending. In the race of madness, it's just me and her... or me and one of the boys. It's one on one time that's so precious, so rare and so needed. These little reading moments add up. Tonight they added up to a really big moment for me.
There are times, so, so many times, that I wonder if I'm giving my kids the best I can. The balance eludes me most days... almost all days. Tonight, the balance was tough, as usual. It was a day that I wanted to throw in the towel and crawl in the bed. I didn't. I finished strong... stronger than I started. Thanks to my girl for being my bucket filler. For making me realize that even though sometimes I fail, I get back up stronger, I try harder. I'm glad she's mine. I'm glad I'm hers.
I climbed in bed with Bella to read to her. I finished her chapter and we were talking. We were laughing and snuggling. She said "You are the best mom ever". I told her how much that meant to me and how that was the very best part of my day. I told her how I really appreciated her sharing that she felt that way with me. "You really are the best mom ever". My heart was full. My mind was calm.
These are always the moments that I'll never regret spending. In the race of madness, it's just me and her... or me and one of the boys. It's one on one time that's so precious, so rare and so needed. These little reading moments add up. Tonight they added up to a really big moment for me.
There are times, so, so many times, that I wonder if I'm giving my kids the best I can. The balance eludes me most days... almost all days. Tonight, the balance was tough, as usual. It was a day that I wanted to throw in the towel and crawl in the bed. I didn't. I finished strong... stronger than I started. Thanks to my girl for being my bucket filler. For making me realize that even though sometimes I fail, I get back up stronger, I try harder. I'm glad she's mine. I'm glad I'm hers.
Wednesday, October 11, 2017
On grief and love
This week, several of my friends have been impacted by the loss of someone they love. It's heartbreaking to me to watch their lives shatter before their eyes and the changes that happen due to the loss of one person.
My best friend told me some expert advice when my dad died. She said something along these lines...
It never gets easier, the pain never goes away. We just learn to deal with it differently. There are days you won't cry at all then there will be a whole week when you just break down. Sometimes it hits you at the most random times or in the most random places. Your heart feels heavy. Your life will never be the same. It will go on, in a way that's different than you know.
She was right. Six and a half years later I still feel the same way.
She was one of the only people that didn't say "God has a plan" or "God needed him more". When people said that, I knew they were trying to console me. Instead there was a fire in my soul that it added gasoline to. The fire burned bigger and brighter each time. I hated God in that moment. God was the last person I wanted to hear about. My heart was screaming out that there was no way that anyone needed him more than I did.
There was no doubt in my heart that my babies needed to meet the man that raised me, they needed to know him not from me but from him. My babies needed to see his laughter and feel his arms wrapped tightly around them. They needed to see the way that he loved his children and that he loved his grandchildren. They needed to watch him face life fearlessly and live each moment as if it might be his last. If you knew him, you know that he did that.
(Pancakes for my kids, my mom did this for us when we were little and I remember it to this day. Re-creating those memories with my babies!)
What I've learned from all of this, share the love. Whether it's picking up the phone and calling an old friend or sending them a Facebook message. Spend time with the people you love, forget the gifts, build the memories. I can tell you there's not one memory I have with my dad that I regret. Do I have things of his that I remember him by? Sure I do. The things that stick out are the memories we made, not the things I can hold in my hands. Hold those babies tighter. Take that trip, who cares about the couch that could be replaced, the couch can wait, the trip can't. Read that extra book. Go on that extra long bike ride. Don't wake up tomorrow regretting something you could've said but didn't. Make today count.
My best friend told me some expert advice when my dad died. She said something along these lines...
It never gets easier, the pain never goes away. We just learn to deal with it differently. There are days you won't cry at all then there will be a whole week when you just break down. Sometimes it hits you at the most random times or in the most random places. Your heart feels heavy. Your life will never be the same. It will go on, in a way that's different than you know.
She was right. Six and a half years later I still feel the same way.
She was one of the only people that didn't say "God has a plan" or "God needed him more". When people said that, I knew they were trying to console me. Instead there was a fire in my soul that it added gasoline to. The fire burned bigger and brighter each time. I hated God in that moment. God was the last person I wanted to hear about. My heart was screaming out that there was no way that anyone needed him more than I did.
(Making memories with my babies and my husband)
What I've learned from all of this, share the love. Whether it's picking up the phone and calling an old friend or sending them a Facebook message. Spend time with the people you love, forget the gifts, build the memories. I can tell you there's not one memory I have with my dad that I regret. Do I have things of his that I remember him by? Sure I do. The things that stick out are the memories we made, not the things I can hold in my hands. Hold those babies tighter. Take that trip, who cares about the couch that could be replaced, the couch can wait, the trip can't. Read that extra book. Go on that extra long bike ride. Don't wake up tomorrow regretting something you could've said but didn't. Make today count.
Wednesday, September 6, 2017
My tender little heart
Yesterday was the first day of school, I'll share those highlights later. Tonight, I almost cried while listening to our Bella read about history. Blah, most boring thing ever to this mama. She had read me a book and I was reading her a book about President Truman. One line red "During his presidency, some Americans criticized him."
"What does criticize mean mama?"
"Hm... it kind of means like judge people."
"Like how? Give me an example."
"Bella your math is not that good, you really aren't good at math." She smiled. Then she stopped.
Deep in thought, she said "That's what Mike (*name changed for privacy) did to me last year. He criticized me all of the time. That's tough."
"Yeah that didn't make you feel good. It can make people work harder because they see it as a challenge OR it can make you sad because you are trying your best and they are hurting you."
"Yeah but here's the thing. It did make me work harder. It also made me be nicer to Mike. He needed that from me. You never really know what other people need. He needed that because you don't know if someone hasn't been nice to him or what his life is like at home. You just don't know. Being kind to him, showed him that I wouldn't criticize him back."
"Wow Bella, you impress me. That would have really frustrated me and I'm not sure if I could have been nice like you. I'm super proud of you for thinking about what he needs even it's hard for you."
Just like that, we continued reading. Then we stopped and snuggled. I told her how proud I was of her and how happy I was that she was my daughter. Proud doesn't even describe the full emotions that I feel for her grown up thoughts. When I grow up, I hope I'm more like her.
"What does criticize mean mama?"
"Hm... it kind of means like judge people."
"Like how? Give me an example."
"Bella your math is not that good, you really aren't good at math." She smiled. Then she stopped.
Deep in thought, she said "That's what Mike (*name changed for privacy) did to me last year. He criticized me all of the time. That's tough."
"Yeah that didn't make you feel good. It can make people work harder because they see it as a challenge OR it can make you sad because you are trying your best and they are hurting you."
"Yeah but here's the thing. It did make me work harder. It also made me be nicer to Mike. He needed that from me. You never really know what other people need. He needed that because you don't know if someone hasn't been nice to him or what his life is like at home. You just don't know. Being kind to him, showed him that I wouldn't criticize him back."
"Wow Bella, you impress me. That would have really frustrated me and I'm not sure if I could have been nice like you. I'm super proud of you for thinking about what he needs even it's hard for you."
Just like that, we continued reading. Then we stopped and snuggled. I told her how proud I was of her and how happy I was that she was my daughter. Proud doesn't even describe the full emotions that I feel for her grown up thoughts. When I grow up, I hope I'm more like her.
Friday, September 1, 2017
My heart and soul
I've had a rough week, as a mom, as an educator, as a wife, as a daughter. I can talk more about that later. With all that said, I've cried 3 times this week. Some weeks are just like that. I was thankful for it to be Friday and have a long weekend before school starts for the kids AND for me too!
Bella was having a rough night. Luca really wanted to sleep with her, the little snuggle bug. She needed some space. She agreed because she knew how bad he wanted to and that we'd allow it because it was the weekend. Then, she melted into a million emotions.
We talked and she expressed a lot of emotions. When I told her that I understood her being stressed out and feeling out of sorts. There's been a lot going on in our lives individually and as a family. She has such a pure heart and a genuine soul. When we continued talking, she expressed that she trusted "you and Daddy, I really know that I can trust you. If I tell you something and ask you not to tell anyone, you don't." My heart melted into a million pieces. She realizes that she can confide in me and that I won't tell anyone. This says a lot about what she thinks about me. I'm glad that she knows that I'm a trusting person.
As we continued to talk, she made me realize that I'm doing okay as a mom. Sometimes as moms, we really struggle. I struggle with working full time, being a mom, doing volunteer stuff for school, being a wife, a good friend, maintaining our marriage, feeding my soul, working out and feeling strong... it's a constant balance. Sometimes, one side of the scale is heavier than the other. Today it was. Bella said to me "you and dad are really great parents, you really are." I thanked her for sharing that with me. I told her how I was proud of her and that's she's a really great kid.
Tonight, the scale was heavy on the mom side. Tonight, I cried happy tears. My girl gets me.
Bella was having a rough night. Luca really wanted to sleep with her, the little snuggle bug. She needed some space. She agreed because she knew how bad he wanted to and that we'd allow it because it was the weekend. Then, she melted into a million emotions.
We talked and she expressed a lot of emotions. When I told her that I understood her being stressed out and feeling out of sorts. There's been a lot going on in our lives individually and as a family. She has such a pure heart and a genuine soul. When we continued talking, she expressed that she trusted "you and Daddy, I really know that I can trust you. If I tell you something and ask you not to tell anyone, you don't." My heart melted into a million pieces. She realizes that she can confide in me and that I won't tell anyone. This says a lot about what she thinks about me. I'm glad that she knows that I'm a trusting person.
As we continued to talk, she made me realize that I'm doing okay as a mom. Sometimes as moms, we really struggle. I struggle with working full time, being a mom, doing volunteer stuff for school, being a wife, a good friend, maintaining our marriage, feeding my soul, working out and feeling strong... it's a constant balance. Sometimes, one side of the scale is heavier than the other. Today it was. Bella said to me "you and dad are really great parents, you really are." I thanked her for sharing that with me. I told her how I was proud of her and that's she's a really great kid.
Tonight, the scale was heavy on the mom side. Tonight, I cried happy tears. My girl gets me.
Saturday, July 29, 2017
Camp No Limits- The last full day
The morning ran the same, breakfast, energizers, OT/PT, life skills and sibling groups, lunch then peer support groups. During OT Bella got to try some other prosthetics, which was really fun AND she got to test out the i-limb. Can I mention that the i-limb costs $90,000?! Holy batman. It was really interesting to watch all of the upper limb difference kids try it. Bella was able to trigger it perfectly to get the hand to open and close... to which her response was "This will be my next hand!". Lord help me! I know there are grants and other programs that make this sort of thing possible. If she continues to use her sports arm, then we may pursue something more.
Water front activities were next. We found out that Camp Cross doesn't have a provision in their contract for stand up paddle boards which meant that an adult had to be on the paddle boards when someone that was under 18 was using one. Bummer for the kids because they really enjoyed it. Next year, Mel talked about building this into our Camp No Limits programming. However, if you know someone in the Idaho/Wisconsin area that would come to Camp Cross and do adaptive sports, we could have a whole day of adaptive water front activities! Please connect them with me if you do! Email me
The last night is always a slide show, talent show, and dance. Honestly, I want to cry every time I see the slide show. There are so many moments that other people capture of my kids or other kids that make my heart melt. Watching ALL of the kids at camp grow in just a few short days is worth every penny. They make tremendous growth in activities of daily living, being more effective with or without prosthetics, running, walking, buttoning, pony tails, shoe tying... most of all, the amount of confidence they gain in this time is worth a million dollars.
The talent show... oh dear Lord where do I begin... with this I will share one photo before I tell more.
Shine's hair shop was a big success. The "customers" left with lip STAIN, moles, mascara and who knows what else. The best part of the talent show is seeing the kids have SO much confidence to present something that they are proud of or be creative. I love it! Not to mention, I loved that Ryan was willing to put on a dress, witches hat, wig and feather boa all for his daughter. I got a good one!
(Hungry hungry hippos, human style!)
Next up, slip and slide. This was insanely fun! Who knew?! We watched campers, staff, volunteers and parents go down. The facial expressions while watching at the bottom were hilarious! I know you are dying to know if I went down it... you bet! I mean it's not every day that theres a slip and slide that's big enough for an adult. Ryan didn't go down it. Loser :) I'd be lying if I said I wasn't afraid for my life while I went down. I did slide off the end and into the grass. It was quite fun and the kids are sure to agree.
Water front activities were next. We found out that Camp Cross doesn't have a provision in their contract for stand up paddle boards which meant that an adult had to be on the paddle boards when someone that was under 18 was using one. Bummer for the kids because they really enjoyed it. Next year, Mel talked about building this into our Camp No Limits programming. However, if you know someone in the Idaho/Wisconsin area that would come to Camp Cross and do adaptive sports, we could have a whole day of adaptive water front activities! Please connect them with me if you do! Email me
The last night is always a slide show, talent show, and dance. Honestly, I want to cry every time I see the slide show. There are so many moments that other people capture of my kids or other kids that make my heart melt. Watching ALL of the kids at camp grow in just a few short days is worth every penny. They make tremendous growth in activities of daily living, being more effective with or without prosthetics, running, walking, buttoning, pony tails, shoe tying... most of all, the amount of confidence they gain in this time is worth a million dollars.
The talent show... oh dear Lord where do I begin... with this I will share one photo before I tell more.
Please tell me that you didn't laugh? I about died a million deaths! What good sports these guys were!
They finish the night up with a dance. By this point, Bella was exhausted. She's our girl that has no problem saying when she's ready for bed. About 45 minutes into the dance, she asked to go to bed! It was fun seeing all the kids just let loose and dance around. Even parents and volunteers got in on the action. Truly no judgement, which is the best part of the whole thing!
Thursday, July 20, 2017
Big thanks to all of the volunteers!
A big thank you to all of those that volunteered for Camp No Limits Idaho. Volunteers can truly make or break a camp. They help with occupational therapy, physical therapy, sibling groups, energizers... I mean they help with everything! They take on whatever role they need to in the moment.
Thank you for being adaptable, open minded, compassionate, passionate, caring and kind. Your energy makes all the difference. You all should have seen the volunteers during energizers in the morning, they were all over the place! They danced, they encouraged other campers to dance and siblings too. They created such a great energy at camp for everyone.
As a mother of a camper AND siblings, I appreciate everything you did to help this camp run smoothly. Having the sibling programs makes it possible for me to be part of Bella's therapies and activities. It also allowed me to spend time in parent support group. Missy goes out of her way to have fun activities with the sibling campers! Without all of you, I'm not sure Missy could (or would want to!) handle our two boys in addition to all of the other siblings. Having volunteers helps parents to be more at ease and know that all the siblings are getting plenty of attention AND having plenty of fun! Trust me, the boys had a great time and were telling us all about the activities that you did with them. They truly enjoyed every moment of camp, just as they did in years past!
I enjoyed having you be part of the parent support group as well. As I mother, this year, I learned a tremendous amount about Shriners, insurance and cost of prosthetics. I received support and encouragement from so many parents and volunteers. As a pediatric nursing professor, this also opened my eyes up to life outside of the hospital world. It allows me to see that these kids live full, fulfilled lives with a variety of limb differences and amputations. It allows me to go back and share with my students the things we as nurses should be aware of when dealing with patients and families in these situations. I talked to so many volunteers who said the same thing. I hope this opened your eyes and you'll share this information with your colleagues as well.
Thank you for pushing our kids. Thank you for lifting them up, for creating trust with them, for encouraging them. Dylan watched Bella use her prosthetic and having him watch her and ask questions meant a lot to her. I only mention that because I was right there when he was there. I know there are a number of you I haven't mentioned by name but that doesn't mean I appreciate you any less. Bella really enjoyed not having me there with her for every moment, Miss Independent. Having volunteers and people other than her parents push her is highly important!
You each really took the time to get to know the campers and talk to them. You created lasting impacts on their lives and our lives. From the bottom of our hearts, thank you!!
Thank you for being adaptable, open minded, compassionate, passionate, caring and kind. Your energy makes all the difference. You all should have seen the volunteers during energizers in the morning, they were all over the place! They danced, they encouraged other campers to dance and siblings too. They created such a great energy at camp for everyone.
As a mother of a camper AND siblings, I appreciate everything you did to help this camp run smoothly. Having the sibling programs makes it possible for me to be part of Bella's therapies and activities. It also allowed me to spend time in parent support group. Missy goes out of her way to have fun activities with the sibling campers! Without all of you, I'm not sure Missy could (or would want to!) handle our two boys in addition to all of the other siblings. Having volunteers helps parents to be more at ease and know that all the siblings are getting plenty of attention AND having plenty of fun! Trust me, the boys had a great time and were telling us all about the activities that you did with them. They truly enjoyed every moment of camp, just as they did in years past!
Thank you for pushing our kids. Thank you for lifting them up, for creating trust with them, for encouraging them. Dylan watched Bella use her prosthetic and having him watch her and ask questions meant a lot to her. I only mention that because I was right there when he was there. I know there are a number of you I haven't mentioned by name but that doesn't mean I appreciate you any less. Bella really enjoyed not having me there with her for every moment, Miss Independent. Having volunteers and people other than her parents push her is highly important!
Wednesday, July 19, 2017
Round Robin
Today, I spent three hours on the phone with Scheck and Siress and Shriners. Three hours of my life that I'll never get back but I hope that they both (or at least one of them) see the light. At Camp No Limits, during one of the parent support groups, I learned typical process for prosthetics at Shriners. I also learned that our process was far from typical.
Here's what happened... when we picked up the prosthetic, we were told that we had to pay our 10% of the prosthetic BEFORE it was released to us. We paid over $530 for the prosthetic and were on our way. There is another $394 sitting in limbo to see if we met more of our deductible. The original bill for the prosthetic was around $9000. I swiped my credit card and was sent on my way with a sports arm for Bella.
Here's what SHOULD have happened according to what I learned at Camp No Limits. Scheck and Siress should have billed insurance, insurance should have covered "their" portion. The remainder should have been billed back to Shriners for them to cover the remainder. That did not happen. Hence why I spent so many hours on the phone trying to get this situation resolved.
Some of you may be saying "Well it's only $530"... you are SO right, it's only money. I can't take it with me when I die. However why should my daughter suffer because she was born without fingers on her left hand? Why should she have to make adaptations in a world that was built for two handed individuals? Why should she not be able to be a "normal" kid, playing, doing cartwheels, riding bikes, doing PE class?
Remember back when she had the fall in PE class due to her limb difference? Yeah so that happened. It could have had long term ramifications, I'm so thankful that it did not. However, let's play devil's advocate. She only suffered in pain for seven days because she didn't have the balance due to her lack of fingers, causing her to fall and severely sprain her neck. This left her out of gym and recess for an entire week. To a kid, those are some of the highlights of your day. It could have left her paralyzed, with a head injury, a brain injury, to be catherized for urine... it could have changed our lives in a much different way. Could've but it didn't. Yes, this is ONE reason she needs a sports arm.
I teach pediatric nursing and the JOB of children is play, just like you have a job. My job is teaching nursing, Bella's job is to play and learn through that. This is one small example of how she can't play due to her limb difference. I would not allow her to do another hand stand until she received her prosthetic and be balanced... however, her injury also has made her have a fear of head stands. She recalls the pain, the missing out on being a kid, missing out on recess and sitting out of gym class. She talks about it, she doesn't want it to happen again.
Camp No Limits once again made me think of things and how Bella is affected. This mama bear is always working to protect her cubs. Today, that meant advocating for her for many hours on the phone. They can come back and say no... and they just might do that. In the end, I stood up for my girl and I won't back down. Not today, not ever.
Here's what happened... when we picked up the prosthetic, we were told that we had to pay our 10% of the prosthetic BEFORE it was released to us. We paid over $530 for the prosthetic and were on our way. There is another $394 sitting in limbo to see if we met more of our deductible. The original bill for the prosthetic was around $9000. I swiped my credit card and was sent on my way with a sports arm for Bella.
Here's what SHOULD have happened according to what I learned at Camp No Limits. Scheck and Siress should have billed insurance, insurance should have covered "their" portion. The remainder should have been billed back to Shriners for them to cover the remainder. That did not happen. Hence why I spent so many hours on the phone trying to get this situation resolved.
Some of you may be saying "Well it's only $530"... you are SO right, it's only money. I can't take it with me when I die. However why should my daughter suffer because she was born without fingers on her left hand? Why should she have to make adaptations in a world that was built for two handed individuals? Why should she not be able to be a "normal" kid, playing, doing cartwheels, riding bikes, doing PE class?
Remember back when she had the fall in PE class due to her limb difference? Yeah so that happened. It could have had long term ramifications, I'm so thankful that it did not. However, let's play devil's advocate. She only suffered in pain for seven days because she didn't have the balance due to her lack of fingers, causing her to fall and severely sprain her neck. This left her out of gym and recess for an entire week. To a kid, those are some of the highlights of your day. It could have left her paralyzed, with a head injury, a brain injury, to be catherized for urine... it could have changed our lives in a much different way. Could've but it didn't. Yes, this is ONE reason she needs a sports arm.
I teach pediatric nursing and the JOB of children is play, just like you have a job. My job is teaching nursing, Bella's job is to play and learn through that. This is one small example of how she can't play due to her limb difference. I would not allow her to do another hand stand until she received her prosthetic and be balanced... however, her injury also has made her have a fear of head stands. She recalls the pain, the missing out on being a kid, missing out on recess and sitting out of gym class. She talks about it, she doesn't want it to happen again.
Camp No Limits once again made me think of things and how Bella is affected. This mama bear is always working to protect her cubs. Today, that meant advocating for her for many hours on the phone. They can come back and say no... and they just might do that. In the end, I stood up for my girl and I won't back down. Not today, not ever.
Tuesday, July 11, 2017
Sibling care
Yesterday, after we received Bella's prosthetic, we had another appointment for one of her brothers. Bella and Grayson attend "sibling care" at Children's Hospital of Wisconsin while I attend the appointment with Luca. It's a really great resource for the siblings, they get a lot of attention, there's tons of toys and creative activities and the get to interact with some really great people. Mary is one of them.
I've worked with Mary at Children's for many years. She's held a number of roles. She's also married to one of the chaplain's who I happen to adore. I've been able to interact with her on a nurse level and now as a parent. She's amazing.
I dropped the kids at sibling care yesterday and carried on at my appointment with Luca. It takes about an hour each time and we have weekly appointments. Bella and Grayson have grown familiar with Mary and are very comfortable with her.
Bella wanted to share with Mary that she had just picked up her prosthetic. Mary asked "can I ask some questions and you can say pass if you don't want to answer?" Once again, she's amazing and the one she prefaced this to Bella was so kind. Bella said "Sure"
"Were you born without your hand or did something happen?"
"I was born like this."
"So you've never been able to experience life with two hands."
"No"
"Soooooo tell me what was it like to put on the prosthetic for the first time? Was it just ok? Was it totally awesome? was it different?"
"It was TOTALLY awesome!"
I could hear the excitement in Bella's voice and my heart skipped a beat. I gave Mary the look... how kind and loving that she asked her and genuinely showed her excitement for Bella. We continued to talk about Camp No Limits and how she'll learn to really use it this coming weekend. Mary expressed her interest, wrote down the name of camp and told Bella she couldn't wait to hear all about it. Mary's expressions on her face said it all and Bella's face lit up.
After all the struggles with appointments, all the back and forth of driving, all of the complete exhaustion on my part, the tears on her part from being stuck in a car... the world melted away and it was all worth it. In that moment, everything I've worked so hard to do for this girl came back to me ten fold. I had done something that was so much more then fight with insurance and tons of driving. I had helped her to open doors ahead of her. I had helped her to realize that we will fight to the ends of the earth for her. I had given it my all and it was worth it. SHE was worth it. This moment was worth it.
I've worked with Mary at Children's for many years. She's held a number of roles. She's also married to one of the chaplain's who I happen to adore. I've been able to interact with her on a nurse level and now as a parent. She's amazing.
I dropped the kids at sibling care yesterday and carried on at my appointment with Luca. It takes about an hour each time and we have weekly appointments. Bella and Grayson have grown familiar with Mary and are very comfortable with her.
Bella wanted to share with Mary that she had just picked up her prosthetic. Mary asked "can I ask some questions and you can say pass if you don't want to answer?" Once again, she's amazing and the one she prefaced this to Bella was so kind. Bella said "Sure"
"Were you born without your hand or did something happen?"
"I was born like this."
"So you've never been able to experience life with two hands."
"No"
"Soooooo tell me what was it like to put on the prosthetic for the first time? Was it just ok? Was it totally awesome? was it different?"
"It was TOTALLY awesome!"
I could hear the excitement in Bella's voice and my heart skipped a beat. I gave Mary the look... how kind and loving that she asked her and genuinely showed her excitement for Bella. We continued to talk about Camp No Limits and how she'll learn to really use it this coming weekend. Mary expressed her interest, wrote down the name of camp and told Bella she couldn't wait to hear all about it. Mary's expressions on her face said it all and Bella's face lit up.
After all the struggles with appointments, all the back and forth of driving, all of the complete exhaustion on my part, the tears on her part from being stuck in a car... the world melted away and it was all worth it. In that moment, everything I've worked so hard to do for this girl came back to me ten fold. I had done something that was so much more then fight with insurance and tons of driving. I had helped her to open doors ahead of her. I had helped her to realize that we will fight to the ends of the earth for her. I had given it my all and it was worth it. SHE was worth it. This moment was worth it.
Monday, July 10, 2017
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!
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!
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!
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!
Friday, June 30, 2017
Hurry up... and wait...
I honestly thought we were going to pick up Bella's prosthetic on Wednesday. Much to my disappointment and hers, it was another fitting. Apparently there are several fittings before she actually receives the final device. Who knew? This stuff takes time people, time that we don't have!
Why don't we have time? Camp No Limits starts July 14th for us! While that seems like another 2 weeks away (because it is!), weekends don't count when they are working AND a holiday falls between now and then. I'm not the expert in prosthetics but the amazing thing about camp is that there are TONS of experts! There are OT's, PT's, limb different adults, youth and kids, parents who can help us and people that can influence Bella's use of her prosthetic in a way that Ryan and I can not. Let's be real, kids prefer someone other than their parents at certain times. The experts are not in our neighborhood or even our city. The experts are truly at Camp No Limits, yet one of the many reasons we attend yearly.
They did a fitting yesterday and made a few adjustments. Then it gets sent out to another place. There they mold her final prosthetic which is much lighter than the one she tried. She picked a fabric that they'll mold into her device too. The two pieces that go on the end of her terminal device weren't in yet either. So we wait...
While we are going through Scheck and Siress, Shriners also wants to see us when we pick up the final device. The problem with that is that Shriners only has appointments with Dr. Ackerman on Friday mornings. Friday's I work all day, as does Ryan. Not to mention that we only have one more Friday between now and camp (not counting tomorrow)... AND they don't think our device will be ready by that Friday. I THINK I have them convinced to have us come down on the Monday prior to camp, which also happens to be my day off. Then we can come back after camp on a Friday when I'm actually off to follow up with Shriners. Then if there are adjustments that need to be made to her prosthesis, we can also schedule at Scheck and Siress too.
So... we wait.
Why don't we have time? Camp No Limits starts July 14th for us! While that seems like another 2 weeks away (because it is!), weekends don't count when they are working AND a holiday falls between now and then. I'm not the expert in prosthetics but the amazing thing about camp is that there are TONS of experts! There are OT's, PT's, limb different adults, youth and kids, parents who can help us and people that can influence Bella's use of her prosthetic in a way that Ryan and I can not. Let's be real, kids prefer someone other than their parents at certain times. The experts are not in our neighborhood or even our city. The experts are truly at Camp No Limits, yet one of the many reasons we attend yearly.
They did a fitting yesterday and made a few adjustments. Then it gets sent out to another place. There they mold her final prosthetic which is much lighter than the one she tried. She picked a fabric that they'll mold into her device too. The two pieces that go on the end of her terminal device weren't in yet either. So we wait...
While we are going through Scheck and Siress, Shriners also wants to see us when we pick up the final device. The problem with that is that Shriners only has appointments with Dr. Ackerman on Friday mornings. Friday's I work all day, as does Ryan. Not to mention that we only have one more Friday between now and camp (not counting tomorrow)... AND they don't think our device will be ready by that Friday. I THINK I have them convinced to have us come down on the Monday prior to camp, which also happens to be my day off. Then we can come back after camp on a Friday when I'm actually off to follow up with Shriners. Then if there are adjustments that need to be made to her prosthesis, we can also schedule at Scheck and Siress too.
So... we wait.
Tuesday, June 27, 2017
After all, it's just hair
Bella's been BEGGING to get her hair cut for some time. My mama heart said "it's just hair..." but it also said "ah, it's beautiful hair that took 7 1/2 years to get there!" I kept saying no. Daddy kept saying "Your long hair is so beautiful". In reality, it was in a ponytail every.single.day. Besides, it's her hair, who was I to say no? But I did, time after time.
Then, our "date night" babysitter, we'll call her J, got diagnosed with aplastic anemia. We talked about how she was sick and that she wouldn't be able to watch them for awhile, like a long while. We talked about how we'd likely use her sisters for our "date nights". They all expressed their love for her and Bella got the idea for each of them to make her a video and send them to her. I'll wait for her approval before I post them here for the rest of the world. Her wheels were turning and it didn't stop at the videos.
She asked to cut her hair once again. She prefaced with "I know you are going to say no but just listen, I have an idea"... then it began... "So I thought with J and how she'll lose her hair. She needs my hair more than me, so it's time to cut it. We can just cut it and drive it right over to her house." I explained that wasn't how it worked but that her reasoning was well thought out and I agreed with her. It's just hair and someone else might even love it more than I do. I agreed that Friday we would go right after work. I kept my word.
Then, our "date night" babysitter, we'll call her J, got diagnosed with aplastic anemia. We talked about how she was sick and that she wouldn't be able to watch them for awhile, like a long while. We talked about how we'd likely use her sisters for our "date nights". They all expressed their love for her and Bella got the idea for each of them to make her a video and send them to her. I'll wait for her approval before I post them here for the rest of the world. Her wheels were turning and it didn't stop at the videos.
She asked to cut her hair once again. She prefaced with "I know you are going to say no but just listen, I have an idea"... then it began... "So I thought with J and how she'll lose her hair. She needs my hair more than me, so it's time to cut it. We can just cut it and drive it right over to her house." I explained that wasn't how it worked but that her reasoning was well thought out and I agreed with her. It's just hair and someone else might even love it more than I do. I agreed that Friday we would go right after work. I kept my word.
Sunday, June 18, 2017
Almost ready...
On Friday, Scheck and Siress called to verify that they also received the letter from insurance. The parts had been ordered and now we wait... We were told that once they were ordered they would be ready in 3-5 business days. What's a mom to do? Yes, call this coming Friday to follow up.
I did reach out to Camp No Limits friends to ask about the type of prosthetic. Being newbies to this whole thing, I wanted to be sure what they were ordering was really something that would be useful to Bella. I sent a text to Mary, CNL founder and director, and Keegan, one of the teen mentors who is one of Bella's buds (and mine too!). They were both able to verify that they thought it would work great for what we had in mind. Being able to quickly reach out to a trusted community is essential. I'm thankful that they both responded quickly! I'm beyond thankful to have them both in our lives.
Again, we wait. At least this time, we know exactly what we are waiting for and how long it SHOULD take... anything could change. I'll keep you all posted!
Friday, June 2, 2017
Moving
Yesterday Bella came home from school with news that one of her "best friends" was moving. This is a child that she's been friends with since kindergarten and he happens to be someone that is an incredible role model for all those around him. Bella's been lucky to have him on her side from the start of her formal education journey.
What's a mom to do? Well I promptly texted his mom to ask about it. Their details are their business but I will share that their are talks of them moving. My heart broke for Bella and for me. I like this family!
Bella said "I know you sent his mom a text, what did she say?" I simply said "they are talking about it but nothing is final yet so we'll have to wait and see"
Her words shocked me. Sometimes she's totally my child (hello eye rolling!) and sometimes, like this, I wonder where she came from.
"Mom, if Bill (name changed for privacy) moves, then I'll be sad. He's one of my best friends. But you know what? It would be a good opportunity for him to continue to grow and learn. I know he'll make lots of new friends. I know that we'll still talk and be friends too. It's a good opportunity for him, you know?"
I sat there in awe of my girl. So much wisdom in such a little lady. First off, where did she know and learn how to use the word "opportunity" appropriately? I sometimes have denial that she's growing up! I know she has wisdom well beyond her years. I also admire her for the ability to let her heart break a little and see the golden lining for her dear friend. I'm not sure I could be as strong as her if I tried.
My best friend lives in Kansas City, I'm an adult and can travel to see her and I still hate it every single day. No, like really, I hate it. We've maintained our friendship over many miles for many years. We got married within months of each other, we had babies close together, we are both working mamas with little to no time. You know what... when something is important to you, you make it happen. My friendship is important and it helps to maintain what little sanity I have left.
I know that Bella will keep Bill close to her heart whether or not he goes to her school. She admires his kindness, his ability to stick up for others, his dedication to sports and his ability to include everyone. I also know that as her mom, I'll work for her to maintain this friendship. My eyes fill with tears as I type this. Somehow, I'm part of raising this girl. Somehow, we've done something right. Somehow, she'll find the courage and the strength to support and encourage her friend even if it means some sadness for her. Somehow, I'll muster up the strength to help her through it.
(Selfies from my phone!)
What's a mom to do? Well I promptly texted his mom to ask about it. Their details are their business but I will share that their are talks of them moving. My heart broke for Bella and for me. I like this family!
Bella said "I know you sent his mom a text, what did she say?" I simply said "they are talking about it but nothing is final yet so we'll have to wait and see"
Her words shocked me. Sometimes she's totally my child (hello eye rolling!) and sometimes, like this, I wonder where she came from.
"Mom, if Bill (name changed for privacy) moves, then I'll be sad. He's one of my best friends. But you know what? It would be a good opportunity for him to continue to grow and learn. I know he'll make lots of new friends. I know that we'll still talk and be friends too. It's a good opportunity for him, you know?"
I sat there in awe of my girl. So much wisdom in such a little lady. First off, where did she know and learn how to use the word "opportunity" appropriately? I sometimes have denial that she's growing up! I know she has wisdom well beyond her years. I also admire her for the ability to let her heart break a little and see the golden lining for her dear friend. I'm not sure I could be as strong as her if I tried.
My best friend lives in Kansas City, I'm an adult and can travel to see her and I still hate it every single day. No, like really, I hate it. We've maintained our friendship over many miles for many years. We got married within months of each other, we had babies close together, we are both working mamas with little to no time. You know what... when something is important to you, you make it happen. My friendship is important and it helps to maintain what little sanity I have left.
I know that Bella will keep Bill close to her heart whether or not he goes to her school. She admires his kindness, his ability to stick up for others, his dedication to sports and his ability to include everyone. I also know that as her mom, I'll work for her to maintain this friendship. My eyes fill with tears as I type this. Somehow, I'm part of raising this girl. Somehow, we've done something right. Somehow, she'll find the courage and the strength to support and encourage her friend even if it means some sadness for her. Somehow, I'll muster up the strength to help her through it.
Saturday, May 20, 2017
Words that hurt
Bella was playing a new game I brought home from my Kansas City trip. I thought the game would be fun for all of us to play together. My mom bought two sets for the kids so we could all play, well most of it. She bought it at my suggestion.
We were all outside and playing. Bella would hold the bit with her right hand and then pull the ball off and then toss it with her right hand while holding her mitt under her left arm. She was able to toss it, then put the mitt back on. Well after sometime, she was told by someone "Just put it on your left hand then you don't have to move it"... she got frustrated and came into the house crying. I asked what was wrong.
"I just wish I had two hands" she said through her tears.
My heart broke into a million tiny pieces. I could literally feel it shattering within my chest.
"What happened? Why would you say that?"
In my mind, I knew that there was a time that this would come. I mean there's always a time when we wish for something other than what we are. We want a bigger house. We wish we had more land. We wish we were a size 4. We wish that we had more kids. We wish we had a different teacher... the list goes on! Why wouldn't our sweet little lady wish to have two hands? It's a normal reaction, especially since she was a bit challenged.
That doesn't mean it hurt any less or made me feel any different. I wish I could just give her my hand. I wish I could make it different for her. I wish her heart wasn't hurting. I wish this game didn't challenge her and cause her to think that way. I wish that I could take away the pain that any of my children feel. I literally can't even imagine their first heartbreak. My heart will probably break into a million little slivers too.
"I don't know why I said it. I don't mean it. I just wish people would let me do it MY way!"
To shay my love. To shay. Why can't you do it YOUR way? Here's the thing, she was and she can. Who were we or ANYONE else to tell her how to do it when we weren't in her shoes. How could we know what's best for her when we have two hands? WHO should tell her how to do it? I can tell you who, her friends that are born just like her. Her friends that are challenged in the same way that she has can help guide her. In fact, they HAVE helped to guide her. They helped with zippers, shoe tying, buttons... you name it.
"Here's the thing, Boo. People just want to help you and sometimes we say things like to try it this way because we THINK it may make it easier or less difficult for you. BUT in the end, do what works best for YOU! That's the beauty of being different, we are all different and we each do things in a way that works for us."
She appeared to be soaking in my words. We walked to her room and laid together in her bed to chat some more.
"Can we talk about what you said?"
"Yeah, what about it?"
"That really made me sad that you said that. I can't imagine what it's like to do things with one hand. I do know one thing, I know that because of you being born with your hands the way they are that we've met a lot of different people that we love and adore."
"Yeah like ALL of our Camp No Limits Family. They are our family right? And the Lucky Fin people (meaning the Lucky Fin Project) and Jordan (From Born Just Right) and Shae and when we do the motorcycle fundraisers in Kansas City, all my bikers, and Gary"
"Yes Bella, like ALL of those people. They wouldn't be part of our family if you were born with hands like me."
"Mom, it's true. I really don't want two hands because I love all of those people. I just want to do things my way."
We continued to talk and then she went back outside, picked up that game and did it HER way. You know what, HER way didn't hurt anyone and it was perfectly fine for HER. In the end, that's what matters.
Monday, May 15, 2017
It takes a village
Today, I struggled with being a mother. Life is busy with three kids. There's activities, commitments, guitar lessons, girl scouts, two full time working parents, a marriage, three kids, a dog, four chickens, two vehicles, an RV, a house, laundry, dishes, meals, grass that needs to be mowed, work meetings, on call schedules, teacher meetings, bedtimes, bill paying, teeth brushing, doctor appointments, dentist appointments, baths... need I say more. I mean there's responsibilities galore. It's like a juggling act.
Today, those balls in the juggling act were falling far faster than I could catch any of them and I'm pretty sure I dropped them all. At the end of the night, we all made it out alive, though I couldn't exactly tell you how. There was crying, happiness, laughter, tears, yelling, giggling... it was like a night of bipolar emotions from all parties. The train stopped at every emotion station before stopping for the night.
Today, I struggled. Today, I called in my village. I called my therapist, aka my best friend. I called my mom. I reached out to an old friend. I called in my village. I cried to all three of them. Tonight I struggled, today I struggled. Today, I'm thankful that we all made it out in one piece.
I struggle to feel like I'm "mom enough" to all three kids. They are all so very different, with different personalities, different needs and wants, different hopes and dreams. How can I parent them all in a way that is best for each of them. Is that even possible? I struggled with feeling like I was successful at motherhood.
At the end of the day, I can assure you one thing. It takes a village. It takes the desire to want to do better. My kids push me to the brink of my breaking point, they also make me happier than I've ever been. I can assure you that I will bust my ass trying to be the mom that each of them need, want and deserve. I might die trying but I will try. I will push myself until I can no longer push. While I struggle to feel like enough, I can assure you that I'm giving it 110% every damn day. I can assure you that I call in my resources, I use that village, I seek out more information. I try.
I hope that someday they each realize that while I may not be the best mom, I'm the only mom they have and I've never given up on any of them. I will always strive to be better. I will always push to do more and to be more of the parent they each deserve. I may not be the best but I'll never ever give up.
Today, those balls in the juggling act were falling far faster than I could catch any of them and I'm pretty sure I dropped them all. At the end of the night, we all made it out alive, though I couldn't exactly tell you how. There was crying, happiness, laughter, tears, yelling, giggling... it was like a night of bipolar emotions from all parties. The train stopped at every emotion station before stopping for the night.
Today, I struggled. Today, I called in my village. I called my therapist, aka my best friend. I called my mom. I reached out to an old friend. I called in my village. I cried to all three of them. Tonight I struggled, today I struggled. Today, I'm thankful that we all made it out in one piece.
I struggle to feel like I'm "mom enough" to all three kids. They are all so very different, with different personalities, different needs and wants, different hopes and dreams. How can I parent them all in a way that is best for each of them. Is that even possible? I struggled with feeling like I was successful at motherhood.
At the end of the day, I can assure you one thing. It takes a village. It takes the desire to want to do better. My kids push me to the brink of my breaking point, they also make me happier than I've ever been. I can assure you that I will bust my ass trying to be the mom that each of them need, want and deserve. I might die trying but I will try. I will push myself until I can no longer push. While I struggle to feel like enough, I can assure you that I'm giving it 110% every damn day. I can assure you that I call in my resources, I use that village, I seek out more information. I try.
I hope that someday they each realize that while I may not be the best mom, I'm the only mom they have and I've never given up on any of them. I will always strive to be better. I will always push to do more and to be more of the parent they each deserve. I may not be the best but I'll never ever give up.
Monday, May 1, 2017
Shriner's update
Last Friday, was our Shriner's appointment. Our drive down is a little under 2 hours and we forgot Bella's kindle. Let me tell you she was thrilled about that (insert eye roll here!). However, it was a really good opportunity for her and I to chat about some things that are going on in her little 7 year old life. A good chance for mama and Bella bonding.
We made it to Shriner's and then checked out inside the hospital a bit. We did some reading, played with a little 16 month old guy who was also waiting, fishtailed braided Bella's hair and did some more chatting. We got called back and met with Dr Ackerman, Michael (from scheck & siress prosthetics) and a resident. Dr Ackerman agreed with me that a sports arm with a terminal device would be a good fit for Bella at this point in time. Did I lose you yet? The terminal device is the part of the prosthetic that goes on her left arm and then the "hand" portion is interchangeable... Why go this route? Because this will allow her a mushroom tip (which is used for gymnastics, handstands and cartwheels) and a bike piece (that can clip onto her bike but releases easy, this could then be adapted for tennis, baseball bat, hockey, kayaking)... It gives her some options.
Why not a full prosthetic that she can wear all of the time? I want her to have a purpose, right now she does most things just fine. After her neck injury in PE is when I decided that she should probably have something to help prevent further injuries, to her neck, her wrist, her elbow or other injuries that could occur due to her limb difference and the length difference in her arms. IF later she decides that something would be beneficial ALL of the time, then we'll go that route. However, for now, this is a start.
Why Scheck and Siress? Shriner's in Chicago sends out their prosthetic needs to this company... Why? I'm not sure. What I am sure of is that they have great communication with Dr Ackerman which will help to get our insurance on board. This is one of the main problems we have in Milwaukee. Our pediatrician isn't well versed in prosthetic or limb differences and our needs, which means she would have to communicate better with Hanger. Hanger can't call and talk to her because then insurance would deny our claim because "they are trying to sell her something"... their words, not mine. That's one of the main reasons we went to Chicago, to get a hold of experts. Dr Ackerman is just that, an expert in amputations, limb differences and the needs related to such.
What about the cost? Before I get into this, I'm going to get on my soap box. Here goes. Why is it that someone with TWO hands gets to sit behind a desk and decide what MY daughter NEEDS and if it is appropriate or not? Why is it that this person gets to decide if it's a NEED or a WANT? Why should Bella have a harder time doing handstands or cartwheels because she was born different? We risk injury to her good limb from all of the extra stress that she places on that hand and those joints. The person behind the desk surely is considering all of those things right? Wrong...
Okay back to the cost. I stood at Shriner's and called to be sure Scheck and Siress was "in-network". It took me about 30 minutes to verify that is was and then we headed from Shriner's to their office. We have decent insurance. We've almost met our deductible. Once that is meant, we pay 10% and the insurance company pays 90%. This isn't too bad. The problem comes into place when the policy says the prosthetic can be replaced every 3 years, so then that means we'd have to fight with insurance because she's a child and she's growing constantly so she will likely need something before the 3 years is up.
Why did I share the cost? I feel like it's important for other parents of kids with limb differences to realize there is a a cost, a significant one. We'll likely have to travel to Chicago 2-3 more times for appointments, that's time off of work and school as well as gas and wear and tear on my vehicle. The cost of the prosthetic as well and the things that go along with it are not cheap. The sleeve alone for the inside of the prosthetic (this helps decrease rubbing and ensure a good fit) is $500. Again, these are things that I as a parent of a child with a limb difference did not know or realize. As we move forward, these are things that we will keep in mind. Just some insight for those that are in our shoes.
I hope that this helps someone! I hope that you as a parent of a child with a limb difference can think about your child's needs as they arise and have some sort of understanding because of this blog. I hope those in the community can understand prosthetics a little better.
We made it to Shriner's and then checked out inside the hospital a bit. We did some reading, played with a little 16 month old guy who was also waiting, fishtailed braided Bella's hair and did some more chatting. We got called back and met with Dr Ackerman, Michael (from scheck & siress prosthetics) and a resident. Dr Ackerman agreed with me that a sports arm with a terminal device would be a good fit for Bella at this point in time. Did I lose you yet? The terminal device is the part of the prosthetic that goes on her left arm and then the "hand" portion is interchangeable... Why go this route? Because this will allow her a mushroom tip (which is used for gymnastics, handstands and cartwheels) and a bike piece (that can clip onto her bike but releases easy, this could then be adapted for tennis, baseball bat, hockey, kayaking)... It gives her some options.
Why not a full prosthetic that she can wear all of the time? I want her to have a purpose, right now she does most things just fine. After her neck injury in PE is when I decided that she should probably have something to help prevent further injuries, to her neck, her wrist, her elbow or other injuries that could occur due to her limb difference and the length difference in her arms. IF later she decides that something would be beneficial ALL of the time, then we'll go that route. However, for now, this is a start.
Why Scheck and Siress? Shriner's in Chicago sends out their prosthetic needs to this company... Why? I'm not sure. What I am sure of is that they have great communication with Dr Ackerman which will help to get our insurance on board. This is one of the main problems we have in Milwaukee. Our pediatrician isn't well versed in prosthetic or limb differences and our needs, which means she would have to communicate better with Hanger. Hanger can't call and talk to her because then insurance would deny our claim because "they are trying to sell her something"... their words, not mine. That's one of the main reasons we went to Chicago, to get a hold of experts. Dr Ackerman is just that, an expert in amputations, limb differences and the needs related to such.
What about the cost? Before I get into this, I'm going to get on my soap box. Here goes. Why is it that someone with TWO hands gets to sit behind a desk and decide what MY daughter NEEDS and if it is appropriate or not? Why is it that this person gets to decide if it's a NEED or a WANT? Why should Bella have a harder time doing handstands or cartwheels because she was born different? We risk injury to her good limb from all of the extra stress that she places on that hand and those joints. The person behind the desk surely is considering all of those things right? Wrong...
Okay back to the cost. I stood at Shriner's and called to be sure Scheck and Siress was "in-network". It took me about 30 minutes to verify that is was and then we headed from Shriner's to their office. We have decent insurance. We've almost met our deductible. Once that is meant, we pay 10% and the insurance company pays 90%. This isn't too bad. The problem comes into place when the policy says the prosthetic can be replaced every 3 years, so then that means we'd have to fight with insurance because she's a child and she's growing constantly so she will likely need something before the 3 years is up.
Why did I share the cost? I feel like it's important for other parents of kids with limb differences to realize there is a a cost, a significant one. We'll likely have to travel to Chicago 2-3 more times for appointments, that's time off of work and school as well as gas and wear and tear on my vehicle. The cost of the prosthetic as well and the things that go along with it are not cheap. The sleeve alone for the inside of the prosthetic (this helps decrease rubbing and ensure a good fit) is $500. Again, these are things that I as a parent of a child with a limb difference did not know or realize. As we move forward, these are things that we will keep in mind. Just some insight for those that are in our shoes.
I hope that this helps someone! I hope that you as a parent of a child with a limb difference can think about your child's needs as they arise and have some sort of understanding because of this blog. I hope those in the community can understand prosthetics a little better.
Friday, April 7, 2017
Beauty and the Beast review
I keep seeing posts with friends asking "Is Beauty and the Beast too scary for my child?" We watched it and couldn't love it enough! It was a really great and engaging movie. It's very much like the cartoon movie... only not a cartoon.
Luca and Grayson were fully engaged. They both sat quietly and watched... well that's not the whole truth. Luca talks 24/7... yep like even in his sleep. So there were times when we had to say "Oh shh watch the movie, let's see what happens next". Like multiple times. He wanted to talk about what was happening and what he thought was going to happen next. Grayson on the other hand like our chill easy going guy, just watched and sat quietly.
Bella watched quietly and took everything in. Nearing the end of the movie, I saw tears in her eyes.
I whispered "Are you ok?"
"Mom he looks scary but if they really got to know him then they would know he's not" her eyes remained filled with tears. We cuddled a little closer.
"Mom why are they so mean to him without even knowing him? He's SO nice and so caring. He loves Belle. If they talked to him and knew him they wouldn't be afraid."
"It's just a movie Boo Bear, don't worry" again, I pulled her closer.
At the end of the movie, we talked about it more. I'm so proud of my girl. She asks questions. She thinks deeply about things that effect other people. She cares about other people and how they feel. We've had these talks before about how people do things and it effects us.
I may not win at everything parenting related... actually I don't win at most things. With this, I win. I've done something right with my kids. Compassion is something so many people lack. Thinking about others before yourself is also something I see our society lacking. My girl, she doesn't lack either of those things. While I may not know everything, while I may be constantly learning. I'm winning at this. Treating people how you want to be treated and thinking about others feelings.
As for the movie, there are "scary parts" or parts that kids may find unsettling. The movie itself is not scary. It shows love and compassion. I highly recommend it! Our youngest is 4 and he really enjoyed it... well minus the talking but I don't think that's going away any time soon!
Luca and Grayson were fully engaged. They both sat quietly and watched... well that's not the whole truth. Luca talks 24/7... yep like even in his sleep. So there were times when we had to say "Oh shh watch the movie, let's see what happens next". Like multiple times. He wanted to talk about what was happening and what he thought was going to happen next. Grayson on the other hand like our chill easy going guy, just watched and sat quietly.
Bella watched quietly and took everything in. Nearing the end of the movie, I saw tears in her eyes.
I whispered "Are you ok?"
"Mom he looks scary but if they really got to know him then they would know he's not" her eyes remained filled with tears. We cuddled a little closer.
"Mom why are they so mean to him without even knowing him? He's SO nice and so caring. He loves Belle. If they talked to him and knew him they wouldn't be afraid."
"It's just a movie Boo Bear, don't worry" again, I pulled her closer.
At the end of the movie, we talked about it more. I'm so proud of my girl. She asks questions. She thinks deeply about things that effect other people. She cares about other people and how they feel. We've had these talks before about how people do things and it effects us.
I may not win at everything parenting related... actually I don't win at most things. With this, I win. I've done something right with my kids. Compassion is something so many people lack. Thinking about others before yourself is also something I see our society lacking. My girl, she doesn't lack either of those things. While I may not know everything, while I may be constantly learning. I'm winning at this. Treating people how you want to be treated and thinking about others feelings.
As for the movie, there are "scary parts" or parts that kids may find unsettling. The movie itself is not scary. It shows love and compassion. I highly recommend it! Our youngest is 4 and he really enjoyed it... well minus the talking but I don't think that's going away any time soon!
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