Casey's Circle

Casey's Circle

Strengthening Circles – Improving Quality of Life

Casey's Circle
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Monthly Archives: January 2017

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.

January 19, 2017 Leave a comment

First Aid & CPR Review

January 17, 2017


Emily discussed the basics of First Aid and CPR for parents. The discussion covered areas specific to children with special needs, such as getting them out of the wheelchair (or what to if that is not an option), what CPR looks like with a trach, bed boards for children that can not be removed from their beds (especially when on vents and contained units). PSA Healthcare brought some additional handouts for families. Some where specific to trach care, while some had some practice scenarios to do at home. All of the handouts are available for download below. There are also links to the online reviews from American Red Cross as well as links for full First Aid & CPR courses. We would like to say thank you to Wyoming Springs for graciously hosting us and Shield Healthcare for providing dinner. This was a great way to start this new program.

Online Reviews from American Red Cross

  • Child CPR
  • Infant CPR
  • Adult CPR
  • First Aid

Packing a Go Bag

Sign up for First Aid & CPR classes in the greater Austin area:
CPR Resources (all taught by professional firefighters)

Handouts/Downloads:
DOPE Approach (Trach Emergencies)
Never Give Up (Ventilation when the trach is out)

Did you miss this event? No problem, you can watch the live video. The sound is little low so you may want to turn it up. It’s a little shaky in the beginning as well, but it’s only for a few seconds.

January 18, 2017 Leave a comment

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!

January 17, 2017 Leave a comment

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:
[mp3t track=”Part 1@http://caseyscircle.org/downloads/KOOPInterview2016Part1.mp3″ stop=”Pause”]
[mp3t track=”Part 2@http://caseyscircle.org/downloads/KOOPInterview2016Part2.mp3″ stop=”Pause”]

January 17, 2017 Leave a comment

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