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Uninspired And Defeated

Its one of those days, we al have them.  You know exactly what I mean. I’m feeling uninspired and defeated.

Ever have one of these days?

Ever have one of these days?

I agreed to participate in NaBloPoMo for the month of November. Just two days shy of the halfway point, I’m really running out of steam. Uninspired. I’ve been putting in a lot of time on posts (usually before the sun comes up, but I’ll touch on that later) but I’m not sure if anyone is listening. I’m not sure if there is a point? I mean my post about Tom Cruise got over TEN times the views that “Feeling Charitable” ( a post on how to donate to reputable charities for NO cost to you) did. I probably would have gotten more views on the Art of Winning if I had featured Charlie Sheen instead of the RA patient who climbed Mt. Everest. That has me feeling a bit defeated.




I have been using the blog as an escape lately, trying to stay positive and trying to encourage others to do the same. Maybe our current circumstances are leaching their way into the blog as well. I’m feeling defeated everywhere else, so it’s natural that it would infiltrate here too right? After all, I’m getting less sleep (getting up early to blog, staying up late with a sick kid) feeling more pressure and uncertainty with BIG changes coming in our personal lives, and on top of it all, my older JA kid has been suffering through a very active disease flare. And everything was going so well. *sigh*

But then, I stop for a minute.

As I scan Google trending news for inspiration (and connect the dots in my head to see if I can somehow connect that to JA) I see news about the Philippines. Can you imagine being there right now? Much less having a sick kid who needs medications? I’m sitting in my warm, cozy, safe home reading about the devastation.

APTOPIX Philippines Typhoon

Now I am humbled.

I’m worried about what I can post today, while they are fighting to survive. I can’t imagine what it would be like to have my children there, with JA, in the middle of a flare. I guarantee you, that with the prevalence of this disease, someone is actually experiencing that there, RIGHT NOW.

I sit here in my home, making my son comfortable with his 103 degree fever, systemic rash and high pain levels- with over five thousand dollars of medication (paid for by my insurance) preserved in my refrigerator that will help keep him from getting worse. What is the Phillippine mother doing, with no refrigerator (to keep meds from going bad) because she has NO MORE HOME?  How can her child cope with the pain and fevers, exposed to the elements instead of curled up on the couch in front of 1000 choices on cable tv?

It’ts not great for us right now, and it’s not easy BUT we are still so very lucky.

We have a place to stay. We have access to healthcare and medications. We are working on a plan to help my son get better. He is ALIVE and with me. Aren’t those the things that matter?  I shouldn’t be uninspired or defeated, I am lucky- maybe even a bit spoiled, in spite of our circumstances.

Uninspired and defeated? Maybe for a few minutes. Everyone deserves a pity party now and again, but it only takes a minute to realize how much worse it could be. Living on the “bright side” makes for a much happier life. Time to get my second cup of coffee and listen to some Nat King Cole… I’m going to pick myself up, dust myself off, and start all over again.

…But I Can Change That

No, you DON’T know me…but I can change that.

I may look familiar, but you don’t know me.  You don’t know my kid. You may see us, and think you can judge, based on appearances, but things aren’t always what they seem.

Instead of getting angry, instead of feeling defeated, I can change that, or at least I can try.

Let me share some background and  the incident that started my two day rant.

Things have been rough around our camp. My older son has been in a full-blown flare, with high pain levels, rash, eye-inflammation, high fever, redness and joint swelling. He had been doing pretty well, and was weaning off his medications over the course of the last year. The recent turn of events had us feeling like we had run full-speed into a brick wall.

Before we enlisted the help of the “big-guns,” the serious medications (like chemo drugs- a standard course of treatment for many pediatric rheumatology patients) we wanted to make sure we were doing everything else that we could to make his situation better, and to calm the disease. We tweaked and increased his current medications. We agreed to a couple of rounds of steroids, and we added more physical therapy treatments, including aqua therapy.

Aqua therapy is pretty popular with the over 70 crowd at the location we attend. The warm water therapy pool (heated to 93 degrees) is attached to the indoor water park pool and lap pool for one of our suburban park districts. The university health care system leases the therapy pool and spa during business hours for physical therapy, and there is a strict policy of no patrons under the age of 16 allowed, unless accompanied by a therapist. I have never seen anyone younger than my own mom in that pool, except for my own child, and the physical therapists.

The park district pool- not open during therapy sessions.

The park district pool- not open during therapy sessions.

As usual, we arrived about 10 minutes early to our appointment. We went inside the therapy pool room, and tried to find a seat. The locker area outside was filled to the gills with kids and parents waiting to enter the lap pool area for swim lessons, so the only place we had to wait was the hot pool area. Problem is, there are only two small benches (that can seat 2, maybe three people) and most of the time, they are strewn with the “stuff” (towels, shoes, purses, etc) of the people in the pool.

I learned NOT to touch anyone’s stuff early on, or risk being read the riot act poolside! Even just a small brush aside to make room to sit can elicit stare so icy that you can feel the chill, despite the stifling 90 degree air temp they maintain in that room.

This day, there was exactly ONE place to sit. I gave it to my son. He was the one who has increased pain if he stands more than 5 minutes. He was the one wearing pool shoes (with no support, instead of the ones with his orthotics) he was the one exhausted from fever, and fatigued from his overall ordeal. He was being a trooper just by showing up. I wasn’t going to add to his misery by taking the seat. He needed it more than I did.

A few minutes later, he got in the pool with his therapist.

Working in the therapy pool

Working in the therapy pool

And that’s when it happened.

A gentleman, about my grandmother’s age came over to me and told me what a disgrace my son was. He went on to tell me that my generation was doing a horrible job with the next. I was raising a bad kid, and that was my fault. He obviously had no manners, since he took my seat. He was a disgrace, and I was just as bad for letting it happen. In HIS day….

I stopped him  there.

Excuse me, sir, but do you realize that we are at the therapy pool?  Do you see my son is in a session with the physical therapist? Did you ever consider that I am the only able-bodied one out of the two of us? Do you know anything about his condition? Did you know that he started new medications that are making him dizzy and faint? Did you know he may start chemo next week, that we weren’t sure if he was even well enough to attend a half hour session? Did you know that despite having a pain level of 8 in Washington D.C. this spring, he DID give up his seat to a pregnant woman on the train, because he felt that he was the more able-bodied of the two in THAT situation? Why do you think you know me, that you know him, or that you know our situation so well that you can assume we are “bad” people… especially for something like letting my son sit down for 5 minutes AT A PHYSICAL THERAPY OFFICE? We are on THIS side of the glass- not the fun side. Did that cross your mind, when you were making judgements?

No, you don’t know me….but I can change that. I told him all of those things. Sweetly, politely. I started by telling him that I understood his concern, but he obviously did not think through very much before he approached me. I also said that I appreciated that he waited for my son to be in the pool, out of earshot before approaching me, since it would have hurt his feelings. My son DID say, “no, you sit down, mom,” but since I knew his situation, I insisted. Do you still think I am such a bad mother, and he is such a disgrace now?

Because I was nice (but firm) he heard me. He flushed a bit, and apologized. The next session, he was there again, but had a hard time meeting my eyes. Grant was standing up at the side of the pool. He did hear.

Not all handicaps are visible. Not all situations are as they seem. My story is not unique in the JA community. I have heard from others who recount notes on their  car windows for parking in a handicapped spot (when they didn’t need the wheelchair that day, but would be unable to walk across the parking lot) I was with a friend who was subject to a tirade of cursing for parking in the handicapped spot, until he lifted his pants leg to show his prosthetic leg. We have heard the comments at church including “Its been three years- why haven’t you moved on yet, its only JA,” yet systemic JA has been known to take lives. People may not have the right perception, but I can change that. One person at a time, one incident at a time. They say you catch more flies with honey than vinegar, and I try to remember that too. People are a lot more receptive when I don’t treat them the way they just treated us. It makes them more open to my message, and more apologetic for the wrongs that they have committed. Not always, but mostly.

That is how I am  changing things. I WANT you to know me.