Today I’m sharing an awesome guest post from a fellow JA mom, Kim Poston Miller. I met Kim through one of the JA support groups that I’m part of and I’m so thankful for the friendship that I’ve found in her. Some days I still struggle with Monkey’s diagnosis but reading her posts truly help me. She has such an amazing view on living with JA and has helped me see things differently. She also has a book being released soon called ‘Living with Juvenile Arthritis – A Parents Guide’…I cannot wait to read it! I love that this book is written not from a medical standpoint but from a parent’s view. I love my doctors, don’t get me wrong, but getting advise and knowledge from others who’ve been on the journey is priceless. I hope that even if you aren’t living with JA that this post speaks to you and helps you to see the silver linings in your life. Thank you so very much, Kim, for sharing with us! xo
Funny thing. Five years ago I never would have guessed that I would be here…
I am a planner, a worrier, and a self -professed control freak. The chain of events that unfolded in my life (and even more importantly, in my children’s lives) has sent me on a roller coaster ride that I never would have anticipated. Not in a million years. That stuff happens to other people, not me. I had a pretty good life! My husband was a player for the Chicago Bears. We had two healthy kids (or so we thought) owned our home, and had a dog. We were the poster family for living the American dream, and I wasn’t going to let anything derail that. I had a plan, and a contingency plan for any foreseeable “bumps in the road.” Actually, in the old days I even had a backup plan for the contingency plan that would keep us “on track.” Five years ago, I was cocky and didn’t even know it yet. I was so naïve.
In November of 2008, my older son began to complain of pain. Of course, we brushed it off as growing pains. Get tough! We are a house full of boys after all, and there was nothing remarkable about his routine medical exams. It was something we would keep an eye on, but no one, not even the doctor was concerned.
By 2009, things had gotten worse, and we had seen a pediatric rheumatologist on the suspicion that a condition identified almost ten years earlier might be coming back to haunt us. By February of 2010 things spiraled out of control, after a severe reaction to anti-rheumatic medications which ironically triggered a flare of JA that has taken us nearly 3 years to come back from.
We nearly lost him. He spent time in and out of the hospital, and missed months of school. He endured treatments of chemotherapy, biologics, and physical therapies all in a time that seemed like one long nightmare from which we were unable to wake. Then in 2012, we found out my younger son had it too. Things were going all wrong, and I couldn’t fix it. It was one of the darkest times of my life, but my children needed me to step up, so I did. It was one of our hardest times, but it forced us to slow down and look at things differently, and that my friends, changed everything.
It’s a cheesy colloquialism, I know. In the midst of the storm, you see the cloud’s silver lining. Cheesy or not, it perfectly describes what happened to us. We tend to take our children for granted- we may think about our own mortality, but rarely do we think about theirs, especially during their childhood. When my son started making a bucket list in the hospital, it hit me hard. I realized that he may NOT realize those things, and every day is a gift. The amazing thing is that at the tender age of 11, so did he….and what a gift! Most people muddle through life until middle age (and the mid-life crisis) before the enormity of this gift of life hits them. My 11 year old “got it” well before he entered into puberty. His 9 year old brother “got it” too, after realizing that his sibling was so sick that he may not be there to share his room, throw a ball with, or even have one of those ever so frequent sibling, ahem, disagreements. I found myself getting less irritated when interrupted by my kids. So what that I was chatting with someone on Facebook or on the phone when they ran in the door, breathless and excited because they taught the dog to shake with the other paw? That was the greatest part of their day, and they were excited to share it with me. The moments that I used to um-hmm my way through took center stage again. I realized how much I would miss them if they weren’t there, and how fleeting these moments are. I may not be perfect in this area, but I am much better than the pre-JA mom that I was.
The vacations we missed and the social events we skipped because the disease was rearing its ugly head were replaced with family movie nights and board games, reading snuggled up together on the couch, or just stroking their hair while I watched them sleep.
Some people felt sorry for us, and sometimes we did feel sorry for ourselves. But, I can tell you this. Although I would never choose this for my family, having it has brought us many blessings that we otherwise would have missed. My life is different now, and better in many ways. I hug my kids tighter, I fly by the seat of my pants more, and I have learned to “let go, and let God,” in most areas of my life. Admittedly, I am still a worrier, still a planner, and still have plan a,b and c… BUT I have relaxed, let go of the control, and learned to enjoy and appreciate my life and my family so much more. THAT is my silver lining.
Living through JA has been hard, and it has been more than horrible at times, but without JA I never would have:
1) slowed down to appreciate the small stuff with my kids
2) embraced every good day for the gift that it truly is
3) truly understood the difficulties faced by those who are chronically ill
4) met lifelong friends who are on the same journey with their JA warriors
5) written a book
Five years ago, I thought things would be different. I had NO idea how much my life would be changed. That would drive the me from five years ago crazy, but the new me is at peace with it. As I sit here, watching my children sleep in a Vegas hotel room (driving home from the JA conference and a subsequent surgery at UCLA for one of my sons) I am grateful that we are stopping by Hoover Dam today, to see one of the modern engineering wonders of the world, a one hour pit stop that never would have happened if this “wrench” hadn’t been thrown into our lives.
For us, it’s all about silver linings now.
You can read more about Kim, her family, and parenting a child with Juvenile Arthritis in her new book by Spry publishing Living With Juvenile Arthritis: A Parents Guide, available through most online booksellers. Also visit her at www.livingwithjuvenilearthritis.com