Is your life going according to plan?

Four years ago, I would have never expected to be where I am today.  I had a son who played three sports, all well, and a daughter who was a dancer and cheerleader.  Marty was instantly successful at any sport he tried, and Bella was active in several school activities.  Both had easily made friends in the first year at their new school. It was one of the best times of our lives.  I was blissfully unaware of what was to come, and took my healthy kids for granted. I had no idea it would be the only year that Bella cheered for Marty’s football team, or that he would never again compete in athletics without pain.

Then our world came crashing down around us.

We all got sick, and Bella and I got better.  Not Marty.  His fever lasted two weeks.  He spent Christmas in the hospital, and the doctor actually told me they were fishing for the cause of the fever, rash, and migrating joint pain.  By New Years, they told me it was either a nasty virus or arthritis.

Juvenile arthritis.  It didn’t even register what I was hearing.

Finally in February, we got the diagnosis.  He definitely had juvenile arthritis, but they couldn’t yet tell us what kind.  They said he was an apple but couldn’t tell us if he was delicious, granny smith, or gala. I still didn’t get it.

Fast forward 40 months. Forty months filled with pain, stiffness, inflammation, pills, injections, infusions, lab draws, doctor appointments, hospitalizations, MRIs, x-rays, echo-cardiograms, wheelchairs, ER visits, and infections. Our family has had to learn to plan around Marty’s medical care. We have had to become aware of germs, viruses, bacteria and other threats to Marty’s immune system.  We have dealt with a pericardial and pleural effusion, an ICU admission, and homebound schooling. Our money has gone to doctors and pharmacies instead of family outings. Besides the usual family doctor and dentist, and a half dozen rheumatologists, our list of medical professionals includes an endocrinologist, a cardiologist, an ophthalmologist, a neurologist, a surgeon, a psychologist, a podiatrist, a physical therapist, and some wonderful infusion nurses.

The kids and I have lobbied congress, spoken at fundraisers, attended conferences, and connected with people from around the world. I have cried, laughed, prayed, waited, and grieved. I have both asked for and given advice.

But it hasn’t been all bad.  We have taken trips and had experiences we never would have otherwise. We have grown as individuals and as a family.  We are stronger, closer, and better equipped to deal with adversity.  I appreciate the health that my kids do have. I have made friends that understand both our loss and our new life. We have adjusted our priorities, and are able to let go of the small things.

Now I get it. I understand that juvenile arthritis can be life threatening. It can disable, disfigure, and discourage. But it opens up a new world, full of wonderful people that give you a new perspective on life. It changes the entire course of your life. You will end up in a completely different place than you planned or ever expected. But that’s OK, because you will be better for it.


About juvenilearthritis

A single mom raising a son with juvenile arthritis and a daughter with a big heart.
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