by | Nov 17, 2023 | Caregiver Reflections | 0 comments

Today I am home with a sick child. My complex, disabled, and now ill child.  I started the day annoyed that I had to miss work.  I have only been back to work (barely part-time) a few weeks. I hate the idea of a diminishing paycheck right before the holidays.  I hate even more that I appear flaky to my colleagues as I have already missed work three times due to his appointments, a seizure, and now this.  What a gift that I am able to work with my old colleagues who know Ryan and know I am not actually flaky. They know I do great work and they are grateful for every day I get to be there – they tell me so – but still those stories swirl in my head. 

As I was emailing my team to let them know I would not be able to come in today, I thought to myself, “How did I ever work full time?”  Ryan’s first two years I worked full time, but he was sick so often.  SOOOOO sick. Hospital sick.  Up all night throwing up sick. Seizures sick.  We had to make a deal with one of our favorite substitutes that she would cover my class anytime – even if she had another job lined up – our coordinator would move things so she could cover my classroom on no notice so my students didn’t have one million different people covering for me.  My principal worked with our payroll to get them to spread out my absences over the course of my contract so I still had some money coming home and not losing an entire paycheck at a time. My teammates made extra copies of practically everything they did, “just in case,” we would need it for my class at some point. Which we did. And, as I’ve shared before, we survived because of the community of people loving and supporting us. For two whole years everything we needed was covered by family and friends so we could survive the appointments, illnesses, hospitalizations.  

Fortunately for our little family by Ryan’s third-ish year, things settled down. Miraculously. We had more kids, I stayed home for a few years with them and my husband worked his tail off to support us.  As our youngest two were starting school I went back to work and again had the world’s best colleagues to help. Mostly, things stayed stable and we lived a semi-normal life of raising kids, working, and all the madness that normal families deal with on a regular basis. There have been years off and on that I have been unable to work in order to take care of Ryan’s needs first. Now that he has aged out of our public schools for good, I am back to that stage of not being able to work full time. 

So here I am again, realizing in the midst of being annoyed, that I am incredibly lucky.  I have a husband that is able to work and support us. We have family nearby that can step in and help… for the first time ever, my husband and I went to every single football game together for our high school senior, because our extended family members came and stayed with Ryan for TEN Friday nights in a row! After a year + long wait,  we have found a few hours a day that Ryan can join a community program. During those hours, I get to teach again.  As heavy and frustrating as some days seem, we are all putting one foot in front of the other.  That as hopeless and helpless as I feel some days, that another day does indeed arrive. The sun does rise again. And for another day to be here, I am thankful. 

This post was written by Kelly Roberts, Intern with The Lucas Project.


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