Handy Medical Supplies

Over the years we have acquired a LOT of medical equipment and supplies. There is not a room in our house that does not have some sort of medical items stored inside. We have the Vest in the footstool, closet systems in half the closets to house everything from tape and syringes to IV supplies and oxygen.

After Casey passed away we gave away everything that could expire, and then we have slowly found homes for some of the other items. We still have quite a bit of stuff though. Over time I am sure we will get rid of more stuff, but sometimes it actually comes in handy.

Yesterday was a beautiful day. I decided to get some gardening chores done. I was trimming some of the hedges and the trimmers kept sticking shut. I used a limb I had cut to pry them back open. The blade snapped back and caught my knuckle in its path. It didn’t hurt, but I felt the blade connect with my finger so I looked down to see if it was okay. There was a LOT of blood! I ran inside and washed the blood off to see that I had cut really deep. I am accident prone – always have been. It is not uncommon for me to cut into my finger while slicing bread (or whatever). The huge inventory of first aid supplies gets used at least a few times a year. I am a big fan of steri-strips. With a cut like yesterday’s I would typically go right for the strips. However, this cut was through my knuckle so I knew there was nothing I could do myself that would keep the wound closed. If every time I bend my finger I reopen the wound, it will never heal. Ugh!!! I knew I had to go get stitches.

Tim was in his office with the door closed. I could hear him talking, and could tell it was a work call. I didn’t want to interrupt so I got the bleeding under control by applying pressure, cleaned up the blood in the sink & counter, and then drove myself to the ER. As soon as they got me settled in the room, still bleeding, I thought I should tell Tim what was going on. I was worried I may have missed some of the blood during clean up and if he went into the kitchen and found blood and then couldn’t find me that he may panic a little. In case he was still on a work call though I opted to text him instead of calling.

“In case I missed any on my cleanup, and you see blood in the kitchen, don’t panic. I’m fine, just getting a few stitches and then I’ll be home.”

He thought I was kidding. but after I replied with a picture of my finger he saw that I was not. He told me stitches is a valid reason to interrupt work. I guess now I know for next time. The doctor got me stitched up and made sure that I had not damaged the tendon. She said I was the 5th hand injury that day! She said another guy had a very similar wound, just a tiny bit deeper. He has to get surgery now because he did damage the tendon. I guess I was pretty lucky.

She stitched me up and told me that I needed to keep them for 7 days and then get the stitches removed. She listed off different places I could call, but I told her I would just take them out at home. She asked if I had sterile scissors, which of course I do (I have pretty much any medical supply I could need). I told her that I usually just use steri-strips, but because of the location of the wound had to come in for this one. She laughed a little and then had to know why I was so well stocked at home.

I told her a little about Casey, and of course telling a total stranger your child recently passed is always hard, but then she understood where I was coming from. It made sense why I never go to the doctor, why I have so many supplies, etc.

Since the wound is on the knuckle I have a big brace to keep my finger straight for the next few days. I needed to take a shower, so this morning I went back to my first aid supplies and had to rig up a waterproof splint that I could use. I found tongue depressors in our specimen collection supplies and some waterproof tape. It worked perfect!

Of course, if there is a family that needs any of the supplies we have for a medically complex child we will gladly give them away. While they last though, they do come in handy!

Rants from a Woman About to Lose her S***

crazyI have had many moments in my adult life where I have had to step away and take a moment. It just amazes me though how clueless some people really are.

Let’s start 10 years ago. Tim and I were new parents and had a child with more medical issues that we had ever seen. We were learning how to use new equipment, all about the different types of specialists, diagnoses, treatments, etc. Every day was a struggle to keep our sweet little baby alive. Luckily social media was not what it is today- I really don’t think I could have tolerated social media at that time in my life. I would get so angry at friends and family that would complain about things I would have given anything to deal with. Maybe they were complaining that their child failed the driving test, or that little Johnny was almost 3 and they just can’t get him potty trained. Or maybe I would hear someone asking for prayers because they just could not get over a cold and they had a big meeting coming up at work. UGH!!!! Things things don’t matter! I would love to have a big work meeting coming up that I may miss due to a cold- but instead my concerns are over how to keep my child alive.

It took a while, but I eventually learned that people that do not have children with special needs have very different concerns than those of us that do. They don’t know what my life is like and their concerns were not intended to anger me. I eventually realized I was glad they did not know what my life was like. I don’t want other children to have to go through what mine is going through and if they were completely clueless to my concerns then maybe that was a good thing.

Around Casey’s second birthday I finally met other parents of children with special needs. This was a whole new world for me, I could talk about my fears and concerns and these other moms really understood what I meant. It was great, for a little while. Some of the moms have children with very complex needs and I felt like they did understand. However, there were other moms whose children had the label of special needs, but the child was very minimally impaired. I didn’t understand how a mom with ADHD could come into a group with moms like me and complain about her life. Again, her concerns sounded like a walk in the park and something I would have loved.

I took a step back and realized that in the special needs world things are very subjective. What may seem like the end of the world to one family is a breeze to another. However, we all have very similar emotion struggles. We all have a child dealing with something that we can’t simply fix. It’s not a broken bone that will heal, it’s not a cold that will be gone in a few days, we are all dealing with ongoing issues and we can’t fix it. I had to work really hard to appreciate that while their specific challenges (equipment, diagnosis, doctors, etc) may be very different they were hurting as a parent in a way very much like me.

Then came social media. I was so happy to see all of the different ways that the special needs community connected through social media. There were groups by location, diagnosis, general special needs, for school issues, for insurance, over time there has been a page or group for just about anything you can image. I would go to some of the diagnosis specific groups and get very angry. Casey’s diagnosis has varied effect. Some children or very complex and similar to Casey, but on the other end some children have very few issues at all and will be able to live very full and independent lives. When those families would complain I would lose my mind. Do they not know how lucky they are that their child is doing so well?! Then I would have friends (from the special needs community and from other areas of my life) in my news feed. Seeing people post happy celebrations was great. I am honestly happy for them. Seeing people complain about things that simple don’t matter was getting to me again, just like it had early on with Casey.

I had to learn to let things go, I left groups that I felt were causing me more anger than support. I removed some people from my news feed so that we were still friends, but I wouldn’t see their daily rants on topics that I felt were a waste of time and energy. After a while I was able to log on and not get angry.

Over the last year I have had to step back again many times. After we lost Casey in March I have had very little patience for people complaining about petty things. I want to scream at them and tell them that they have no idea what really matters in this world and that they need to be thankful for what they have. Quit complaining! Your family is healthy, you have a roof over your head and food on your table, life is good! Without fail though, people have no idea how silly they sound when they act as if the world is ending because someone messed up their order at McDonalds and the kids cried because they got fruit instead of fries with their happy meals. No, I will not boycott McDonalds with you over this, nor will I share your post and ask my friends to never go there. IT DOESN’T MATTER!

I had to learn to step away again and take a moment. I’m glad that these moms have children that can cry when they get the wrong order. I’m glad that these moms don’t know the pain that I carry with me every day. I wish that no parent ever had to lose their child. For that reason I am able to be happy that these people annoy me so much and make me want to scream at them. It’s still very hard to keep my composure though when I know what really matters in life and how fortunate these people really are.

I guess my perspective has changed a lot over the years. Casey has taught me to be thankful for everything and she has taught me what really matters in life. I like to think that if she had been healthy and my life had been different that maybe, just maybe, I wouldn’t be one of these clueless moms that drive me crazy. I hope that I would be one of the more compassionate and caring people.

If you have a friend or family member with a child that has special needs, or one that has lost a child. Try to keep that in mind. You don’t have to edit everything you say, but try to appreciate what you do have. We all have bad days, and we are all going to complain about things from time to time. Take a minute and realize what matters most to you. At the end of the day if what matters most is still there, it’s not that bad.

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.

Holiday-Party-Header

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.