I woke up this morning with a sore throat, stuffy nose and achy legs, I thought it was a crappy way to start my day. Then I thought, think of your worst case of the flu. Multiply that times 10. Imagine having it every day. Imagine your child has it every day. Imagine waking up, or not waking because I was up all night with a sick kid, wondering if this was going to be a good day or a bad day. Could we go to the grocery store? Should I call the doctor? How will my other kids feel knowing they will be getting less attention today? That’s Juvenile Arthritis (JA). So I dragged my ass out of bed took some Ibuprofen and reminded myself how lucky I am.
While showering, I do my best blogging in the shower, I thought about Kim and today’s blog post. I mentally threw it away and started again. A few years back, Kim helped me with something, I don’t like to ask for help and for some reason I confided in Kim. It was right about the time she started blogging about JA and the things she was coping with. Instead of reading her updates as they came out and being a really good friend, I read them on occasion, sent a box of chocolates here and there when I knew she was having a bad day and hoped for the best for both of us. Her updates were filled with medical information, I swear I thought she was a nurse. She’s not, she’s just incredibly thorough and wanted to really know what is going on with her kids.
I wallowed in my own misery and avoided Kim, her posts sometimes made me cry. While I was being a less than good person, Kim was going through hell. I only realized the extent of it last week when I read her book. I went to her website, looked at her Amazon Store and thought I’d get her a pick-me-up gift. I looked at her wish list, thought “Holy Crap! We have the same taste! She has the same stuff on her wish list as I do on mine!” Just as I was about to hit purchase, I realized Amazon pulls up my wish list, not hers! Wow! I am sure she would have loved that chili pepper laptop bag! I’ll figure out another way to cheer her up.
In the meantime, I can spread her story and her incredible strength. Let me give you a summary of 2010 – Spondyloarthritis , Drug Rash (or Reaction) with Eosinophilia and Systemic Symptoms , Stevens–Johnson syndrome, Methotrexate (Chemo) by injection, steriod – and that is only 3 months. 2011 – more diet changes, more meds, fly to California to see doctors, pain centers, wheelchairs, ER visits, hormone growth shots, lots of doctors appointments. 2012 – homeschooling, surgery, bucket list, Endocrine, GI, Opthomology. And I haven’t even scratched the surface.
|Trying to appear headless while waiting in clinic
Here’s what’s ironic about all this, Kim now has 2 sick children, before her children were sick, she was helping sick kids. She brought Nurses for Newborns to Tennessee, volunteering as Director of the program and making a financial commitment to the program. While her then husband was an NFL star, Kim shared the success with the smallest voices she heard. Her focus has shifted a bit, in 2012, she and her boys headed to Washington, DC for the Arthritis Advocacy Summit. Although she is now a single Mom, she is pouring her heart into advocating for her children and others like them.
Kim has endured working through her children’s bucket lists, they are sadly aware of their mortality due to a callous conversation between residents in Grant’s room; they alluded to him having a 50/50 chance, within earshot of Kim and Grant. Their bucket list is an envious one, lots of it revolves around food, remind me to introduce Brandon to Grant! She helped her son set up a First Giving Pageso that he can raise money to Cure JM on his own. She has sent out e-mails to friends asking them to play games with her kids online to pass the time, while they lie in hospital beds or wait in waiting rooms. Endured insensitive comments from people who think her kids don’t “look” sick and has had to make excruciating decisions on their behalf. She now struggles with medical bills, insurance companies and having enough time for both kids. She has to cope with two children who have different needs and the associated envy that comes with it, it’s a precarious balancing act.
Not everything has been horrible, Kim, Grant and Evan have made some wonderful new friends, friends that are dealing with the same issues, friends they will have for a lifetime. Her children are wise beyond their years, it’s a double-edged sword. Grant and Evan appreciate each other more than most siblings. JA has gained a phenomenal advocate in her and her children; they have a message that they can give to the world and it’s documented in her book, it is a huge contribution to parents everywhere. Kim’s book is chock full of information that even I can use. She helps you understand medical bills and how to get a discount, yes, a discount on your medical bills! But there is one thing that Kim has to tell you that is so very important; your kids are healthy today, they may not be tomorrow.
In the past, when I feel like I may not be spending enough time with my kids, I often sing the following lyrics to Harry Chapin’s “Cats in the Cradle” –
When you comin’ home dad?
I don’t know when, but we’ll get together then son
You know we’ll have a good time then
There’s a song for everything, remember?
Now I remember something from Kim’s book, she spoke of being flexible and rearranging your priorities. Do I really need to watch today’s episode of Judge Judy or can I run to the school and have lunch with one of my kids? Should I put in OT on Saturday or should I take the kids to the park instead? Easy questions, easy answers. Kim had to give up things because her kids are ill with a disease that has no cure, don’t wait until then to spend time with your kids. Do it now.
Grant and Evan warrant a special mention here, they have learned a lot about compassion. The kids got wind of some rescue dogs that were slated for death, after witnessing a friends death in the hospital, it was more than they could take. With a lot of Facebook posts, phone calls and e-mails, the kids were able to organize donations, rides and homes for all 15 dogs! Since they have a lot of car rides to different states, they were even able to give some of the dogs a ride to their new homes! Really great kids, there is not enough room in this blog for their stories!
As for Kim and her boys, she has threatened them with Twerking if they don’t behave, that’s not something they really want to see. They have formed a tight trio of love, understanding, tolerance and giving. They do walks and runs for arthritis as they can, spreading knowledge as they go.
Follow Kim on Facebook or check out her website, you really will learn about more than just JA! If you don’t I will personally give you a full refund! Since her sites are free, I am happy to oblige! Buy her book, too, I promise you won’t want a refund! Even better, go here to enter a raffle, Goodreads is giving away 10 copies! Do it now! You’ll thank me!
Don’t forget to check back on Saturday to see if Kim wins the coveted Human of the Week award!