Well Said, Judd Apatow

I recently read an article on the New York Times about an interview with Judd Apatow. It was an interview discussing his response over some Trump tweets. The article itself was not about special needs at all, but something in his article really resonated with me.

“There’s a danger on the internet that you think you’re accomplishing something,” he says. “So you see an article about a disease and retweet it and think ‘It’s cured now!’ And you’ve fooled yourself into thinking that you’ve done something productive.”

It seems like every other day I see one of my friends or family members share a post on Facebook that says something to the effect of “Every like get $1 to charity X” or it is a picture of a child with special needs and some horrible story of them being bullied or shun and the post will be begging for likes to show this person they are beautiful. Many of the people in the photos have never given their permission to be used, and the posts claiming to raise money rarely if ever actually do so. Yet, time after time, the post are shared and people go on to think they just saved the world.

There has to be a way as a society that we can fix this. Instead of making negative or false things go viral, lets all volunteer our time for a cause we believe in. Or if you don’t have time to donate, donate money, or promote an organization that is doing something good. Let’s quit wasting our time and effort on things that yield no response and instead lets work together to do REAL GOOD.

The article continues and toward the end Apatow goes on to say:

“I’m trying to transition from making comments on social media to choosing one or two organizations to work with and support so that I feel like I’m actually being a positive part of the process. You don’t want to be a crank.”

Let’s follow his lead and all try to be part of positive change. Well said, Apatow!

Our Annual Radio Interview

This was the fifth year that I join KOOP’s Reflections of Community Outreach as their Christmas guest. Each year we talk about the projects I am working on, and updates on Casey. This year Tim was able to join me and KOOP invited one of the chaplains from Dell Children’s to join us as well.

We talked about some of the events and new programs we have planned with Casey’s Circle for 2017 and we talked about some of the programs going on at Dell as well. We work really closely with Dell (many different areas of the hospital) on a lot of our events and it was great to share the interview with them this year. I look forward to reporting back this year with lots of great updates on the work we are doing to honor Casey.

If you were unable to listen to the interview, you can stream it below:

Play Part 1

Play Part 2

2016 Holiday Party

_30a5171On Sunday, December 11th, we hosted our 5th Annual Special Needs Holiday Party. Along with the Palliative Care Team of Dell Children’s Medical Center we celebrate with many families.

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Santa had books for all of the kids, and we had nearly 20 gift baskets donated by local organizations that we were able to hand out to families as door prizes. The baskets were full of wonderful goodies that the families could all use and or enjoy. Thanks again to our wonderful donors:

Neotech Home Health Legacy Mutual Mortgage
Abilitee Adaptive Wear Sweedie Kids
Austin Aquarium Kaleidoscope Toys
Phil’s Ice House City of Round Rock Parks and Recreation
Hand and Stone Avery Ranch Salon Kerizma
Highland Lanes Papa John’s Pizza
Flix Brewhouse Amy’s Hallmark Shop
Yo So Cool Morgan’s Wonderland
Starbucks Troop 1306

psaThis year, PSA Health Care sponsored our party crafts. They brought out all kinds of fun crafts for the kids, as well as a team of volunteers to help run the craft stations through out the event. Their team dressed up in elf tshirts and were a great addition to the party. We look forward to having them join us again next year.

Casey’s Girl Scout Troop 1306 entertained everyone with some carols. Danielle with Roads of Connection Music Therapy led the kids in a holiday music sing-a-long. Houghton Mifflin Harcourt sent Curious George and the Man in Yellow Hat to read the kids some stories. Last, we wrapped everything up with a visit from the man in red himself- SANTA!!

Steve Eckert volunteered again to capture the party and shared some amazing photos for our guests.

The party was so much fun and we had such a great turn out. We are already looking forward to next year. I would like to also say thank you to our amazing volunteers! We had a handful of people that really worked hard to make sure that everything ran smooth and that all the kids had a great time. Our volunteers helped make it a fantastic day for everyone!

Next year we are thinking of breaking the party into 2. We will have a morning party for the more complex kids, and then a second party later that afternoon for everyone else. If you want to get involved, let us know. We will need lots of volunteers again.

Holiday Party Photo Album

It’s Not Okay!

My daughter, Casey, passed away March of 2016. Some days feel like it happened yesterday and other days feel like it happened so long ago. Overall, I think my husband and I are coping and doing as well as to be expected. There are a few things that have been harder than expected, and I hope that by sharing some of these points that maybe some of you reading this will be able to help any grieving families you encounter.

A common question when any adults meet is “Do you have any kids?” I have asked this question myself many times. Now this hits me when I am least expecting it. I don’t know how to answer this anymore. I don’t know this person, and I do not feel like getting into a long explanation, but at the same time I am not about to say no. Saying no feels like I am disrespecting and negating the amazing life my daughter had. So sometimes I may just say “yes” and leave at that. Other times I am so flustered by the question, that after stumbling over my words I may say something to the effect of “I did”. The latter is followed by the pity face and the automated “I’m sorry” (I’ll talk about that more in the next paragraph). If I say yes and leave it at that, there is typically the follow up question, “How old are they?” I stumbled through this response with a variety of things as well. Another parent that has lost a child gave me the most beautiful response that I plan to use moving forward “Forever 9”. Then typically, that response also leads to the face and “I’m sorry”.

“I’m sorry.” It’s such a simple statement, but it’s actually so much more. After hearing that, the expected response is “it’s okay.” It’s not okay! We lost our baby; it will never be okay. But society and manners make me tell you that is it okay. Please pay really close attention to what I am about to tell you. If someone tells you that they have lost a child (or loved one) DO NOT reply with “I’m sorry”, instead say something like “What was his/her name?” It’s so simple, but it will make a HUGE difference for the person you ask. Instead of feeling guilty for telling you that it’s okay that their child is gone, now they get to share their child’s name. Saying and hearing our children’s names is so special to us.

Don’t automatically look sad, or stuck not knowing how to respond. Just give them a door to share if they want and let them know you care. Depending on how you meet, how much time there is, and how they are doing at that moment, just sharing the name may be all they can handle, or they may want to tell you a little about their loved one. Regardless, they will be so gratefully to you for not making them say it’s okay that their child is gone.

The Conversation

All of my life my mind has wondered. I think most of us do this at least some (maybe I do it more than others). When I am about to meet someone knew, go to a party, present to a group, etc I imagine the event and the dialog that goes with it. I will often imagine full conversations in my head, sometimes out loud (my husband has caught me talking to myself more times than I can count). When I was pregnant with Casey I imagined how conversations would go when I went into labor, telling our friends and family about our beautiful baby, I imagined much more than just conversations. While I was pregnant I imagined the rest of my life. All of the firsts: first word, first step, first day or school, first crush, etc.

It was clear right away that life as I had spent imaging it for those 36 weeks was not going to be anything like I had planned. It was hard to grieve the life that I had imagined, but I did. Eventually I embraced the live that I was given. I learned so much from Casey. She taught me what really matters in life, and about real true love. Every day that I was able to be her mother was gift, and I am so thankful for the nearly 10 years that I had with her.

It’s been over 6 months since Casey passed away. I have found that my mind still wonders, and I still imagine full conversations, but the dialog now is so different. I now imagine conversations that never crossed my mind before.

stock-vector-sad-smiley-emoticon-225052135There is the conversation with an old friend that I run into. I have not seen them since school and they have no idea about Casey and the shattered heart I now carry. When they ask “How have you been?” or “Do you have any kids now?” I imagine how I respond to that. Do I tell them about how I had the BEST kid and how lucky I was to be her mom? Do I tell them about the amazing things she did in her short life and the number of people she continues to inspire? Or, do I tell them about the challenges she faced (and often over came) and the emptiness I am left with in her absence? Or do I simply say, “I’m doing good. Yes, I have a daughter. How about you?” I don’t want pity, and I hate the “oh, I’m so sorry” face that comes with telling someone that your child passed away. I do want to tell the entire world about my kid, the BEST kid, and how amazing she was every single day. How do I tell her story, and not get “the face”?

superthumbI play out the conversation with strangers as well. How do I respond if a stranger asks if I have any kids? Do I say yes, do I say I did, do I say no, not anymore? How do I tell share Casey’s strength and story with the world, without becoming the saddest conversation that person has had all day? How do I get people to see her light, without seeing my darkness? I play the conversations out in my head, and no matter how many different ways I played it, I can’t seem to avoid “the face”. Time is never an issue in my imagination. In my imagination I am able to get the face and then recover by telling them all about how amazing she was and how she continues to inspire people every day.

I know I am still new at this. I hope that in time I am able to find the best way to share her story with the world and for them to see the amazing little girl she was- not just my broken heart. I’ll figure it out, and I am sure she is helping. If you see me and ask about her, please stick around and hear the whole story. I promise, it’s worth it.

Angel Ornament Celebration – 2016

1857_10200907747759939_1223360781_n-e1446579031949A few years ago some of our very close friends lost their little girl. She was VERY much like Casey and we have become very close with this family through our daughters. In 2014 we really wanted to find a way to help honor Giuli’s memory over the holidays and to let her family know that she is still (and always will be) in our hearts.

sMilesforSammyMainLogo1Our palliative care social worker and I came up with a way to honor many of the local children that have passed. I teamed up with an amazing family that runs an organization in their daughter’s memory- sMiles 4 Sammy. The partnership was perfect. This will be our third year to co-host and provide dinner and celebration for these families to honor their child’s memory.

This year’s celebration will be Thursday, December 8rd from 6-8PM at Dell Children’s in Conference Room 3. sMiles 4 Sammy will provide dinner and we will then make special ornaments. Feel free to download and share the flyer if you know anyone in the Austin area that has lost a child and may wish to join us. There is also a Facebook Event if that is easier to share.

ornamentflyer

After the ornaments dry we will be decorating a tree in Mueller Park (nearby the hospital – behind the PICU). After New Years we will take down the decorations and Palliative will have the ornaments in their office for anyone that wishes to pick theirs up.

Remembering Casey’s Music

Our daughter Casey had a traumatic birth that caused a severe brain injury. Her doctors didn’t think she would ever go home, but her whole life she proved them wrong. Once we got home, Marty and I had to handle not only the medical issues, but also wanted to help Casey do the things she loved as often as she could. This was challenging as it was very difficult for Casey to show or tell us when she liked something. But it was amazing what she could tell us and the choices she could make with only small movements or sounds.

img_0638_5126934812_ojpg_25912438565_oCasey’s doctors would say that she was clinically deaf, but that was mostly because she didn’t have the physical control to pass a hearing test. Anyone that spent time with Casey knew that she could hear you very well. She could tell the difference between people’s voices and would let you know if she liked or didn’t like something you were saying.

When Casey was very young, we discovered that she really enjoyed music. She had so many toys that played music and we would sit with her and watch how happy she was hearing all these new and different sounds. She had an Elmo toy that had different buttons that played short songs with Elmo singing – one for country, hip hop, rock, and a couple others. Casey really liked the hip hop button. She didn’t get that from her parents, but it made her happy so we listened to it as much as she wanted.

dsc_0279_26159158910_oAt the time Casey was born, I probably had owned a guitar for about 8 years. I knew some chords and could play a few popular songs, but for the most part my guitar sat there by my desk gathering dust. As Casey got older, we started having a music therapist come to see her every couple weeks. Her therapist, Danielle, played guitar and also introduced Casey to drums, piano, maracas, a ukulele and so many more instruments. Danielle also has a beautiful singing voice, and Casey loved to sing with her.

After seeing how much Casey loved music therapy, I gradually dusted off my guitar and started to play again with Casey. I wasn’t near as good as Danielle, and Casey could tell, but she didn’t give me too hard of a time. Danielle kept coming to see Casey every other week, and Casey and I would have our own “rockin’ out with Daddy” sessions. As the years rolled on, we went from playing every other week, to every week, to eventually every day. We played Spanish songs, country songs, rock and pop, blues, and occasionally some (quietly played) metal if Marty let us. I even learned some My Little Pony’s songs for her, and she knew all the words to those.

img_1573_19644475058_oMany days after work while Marty was cooking dinner, I would hang out with Casey on the couch with my guitar and her ipad. We would go through a bunch of songs and she would tell me which ones she wanted to hear. It didn’t matter if the song wasn’t my style or too easy/hard to play. If Casey liked a song, then I would try to play it for her. And if she was feeling well enough, she would try to sing it to me. This was our special time, easily the highlight of my day, and I am thankful we did this so often the last couple years.

The night before Casey passed away, I sat with her and my guitar on the couch while Marty was taking a break. She was on her bipap machine, too tired to sing along or pick her songs anymore, but I played a few of her favorites. I played my acoustic guitar so she could feel the songs, since her loud equipment made it harder to hear. It felt different than all the other times. I remember being scared that it could be the last time I played for her, and it turns out it was.

I didn’t know if I would ever pick up my guitar again, because I thought it would be too painful or lonely to play without her next to me. But eventually it became too painful not to play. I missed all the songs we shared and didn’t want to forget how to play them. I started slowly, and stayed away from a few songs that were her absolute favorites because they would be too hard to get through. I do miss her when I play, but find more comfort than sadness. I try to remember her beautiful eyes looking up at me and the way her hand felt on my lap and of course the sound of her voice singing.

13173092_10153829884153172_2031086829071377232_oI still play guitar every day, more than I ever did before. Marty got me some guitar picks made with Casey’s fingerprint on them, so now when I play it’s like we are still holding hands. Every time I learn a new song, I think about whether it would be one of Casey’s new favorites and how many times we would play it together on the couch while Marty cooked dinner.

Save The Date(s)

Save The DateWe have a lot of FUN events planned for this holiday season! We will be posting full details very soon, but be sure to mark your calendars now!

We will be teaming up with sMiles 4 Sammy and Dell Children’s Palliative Care Team again for our 3rd Annual Angel Ornament Celebration on Thursday, December 8th from 6-8PM. This special event is a celebration of all the lives of children that have moved on. We share stories and make special keepsake ornaments over enjoy dinner. This event is open to families that have lost a child due to medical conditions and/or illness.

We have partnered with Dell Children’s Palliative Care Team again this year for our Special Needs Holiday Party (Casey’s Christmas) Sunday, December 11th from 2-4PM. This event will require registration, but as always this event is FREE for all families with children that have any special needs. Registration will be available online soon- check back for more details to come.

We are in full swing for our annual book drive as well. If you have any new and/or gently used children’s books that you would like to donate, please contact us to make arrangements: info@caseyscircle.org

We hope to see you all soon! Check back here or on Casey’s Circle Facebook page for more details and registration links in the near future.

Book Drive – 2016

Fall is in the air and that means one thing- our book drive is in FULL effect! We gladly collect books all year, but during the fall we really step it up a notch.

book_drive

We are starting to plan our annual Special Needs Holiday party. The party will take place in the main Live Strong Auditorium at Dell Children’s again.

We are working hard to make sure that this year’s party is bigger and better than all the previous parties- and we need your help to make that happen. We need children’s books (new or gently used). Books are great gifts for all kids, but especially for kids with special needs. There are lots of ways that you can contribute…

  • reindeer-reading-a-bookContact us by sending an email and we can work out a time and place to pick-up or drop-off your personal donation.
  • Do a book drive in your office, church, classroom, etc and let us know so we can be sure to says thanks and set up a time to pick-up the books.
  • If you would like to donate money to go toward book purchases, you can always do that as well. We have a ‘Special Needs Event Fund’ as one of the options on our Donate Page. The Special Needs Event Fund goes towards books, decorations, and other fees for hosting events through out the year. You can add a note if you would like your donation to be strictly used for books.

Happy-SantaWe try to have a few books for each child and their siblings from Santa. For many kids that attend, this is their only holiday party and their only opportunity to see Santa, so we try to make is as special as possible.

As we have done in previous years, all books not used as Santa gifts are then donated to the Dell Children’s library and handed out to children that are in the hospital.

We have already lined up Santa, a holiday music sing-a-long with the amazing Danielle, Curious George, a wonderful photographer, crafts, snacks and much more. Our biggest needs now are books, books and more books. Please help by donating your new or gently used books, and please encourage others to do the same. Thank you for your support.

The party is scheduled Sunday, December 11th 2-4pm. We will be collecting books through Monday, December 5th. Stay tuned for ticket information and more party details.

Friendship Day Winners!

We had so much fun celebrating Friendship Day! We received lots of entries for our photo contest and could not pick just one winner. We decided to add 5 runner up prizes as well. I just dropped the runner up prizes in the mail, and as soon as our shirt order is ready I will get the grand prize mailed out too. We are looking forward to celebrating again next year.

 

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My Little Pony, and Litzsky Public Relations were so great to reach out and offer us additional prizes to include. Casey would be thrilled to know MLP knows what a huge fan she was.

Thanks to everyone that participated!