Our New Normal [s] » Our little family's realization, that there is no normal

Faith in Action: Guest Blogger Kim Poston Miller

It’s pretty easy to be a “good” Christian when things are going well.

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It’s easy to trust in God, have hope and faith when life is running on the smooth side.  I mean, why wouldn’t you feel great and comfy when everything is hunky-dory?

Screen shot 2013-09-13 at 8.59.45 AMThat is were we were about 5 years ago. My husband had a great job. No, a DREAM job playing in the NFL.

We had two well- behaved boys who did well in school, excelled in sports and had plenty of friends. We were also on the social circuit, had a great home, food on the table, and enough left over for all those fun material “extras.” We were coasting through life, enjoying our blessings, giving to charity, and of course walking in our faith. Although we had our share of normal “hiccups,” truth be told, it was pretty darn easy.

Let me tell you folks, that can all change in a heartbeat.

We had known for a while that our older son, Grant, might be suffering from Juvenile Arthritis. We had a sneak peak into that world when he was only two, but had been enjoying years of non-medicated remission. So many years in fact, that we began to doubt that he had it in the first place. In retrospect, we should have taken his “growing pains” more seriously, but like I said earlier, when everything is going great, you don’t really think of those really bad things happening to you!

In just a few weeks, Grant went from aches that prevented him from doing well in sports, to excruciating pain that kept him from sleeping or walking down the stairs without assistance.

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He was immediately started on a course of medications, which seemed to help, just a little. Then everything went from bad to worse. In addition to not controlling the arthritis, the new drugs did not mix well with my son. As soon as a few weeks of treatment had passed, waiting for therapeutic levels of drugs to build in his system, he developed a life -threatening allergy to them. He was hospitalized for nearly two weeks, and homebound for months. My energetic, vibrant child was now a shadow of who he was- physically, mentally, and emotionally. My son, the pee-wee football star, was now using a wheelchair. My son, previously in the top tenth of his class, was now unable to finish half of his sentences due to the “brain fog” caused by the drugs. My son, the social butterfly, was now spending 24 hours a day only with me….because he had no other choice to take care of his needs. In the blink of an eye, our whole world changed.

It is the times like these when our faith is truly tested.

These are the times that we must have hope and faith, truly trusting in God. When you are truly tested, it’s not easy! Now for the big surprise, guess what? Things didn’t get better from there either. Shortly after, my husband’s contract was up, and he was forced into “retirement,” friends, and even some family disappeared, unable to “handle the stress of Grant’s illness,” while my younger son began acting out, due to the lack of attention, supervision and stress he was feeling. Every time I felt like I committed to not letting these events shake my faith, we would have another setback that would make me question it. Despite my faith, it felt like my whole world was crumbling.

Like most people, I had my “why me, why us” moments. There were times that I was angry, with myself for not figuring things out sooner, with the doctors for not listening, for those who were close to us for their abandonment and with God for “letting” all of it happen. After I let these (normal) emotions run their course, I was determined to pass this test… make it through this trial with flying colors.

Nine years before this chain of events took place, I sat in on a sermon. It was at this moment that particular sermon really spoke to me- almost a decade later (which is truly a sign, because I can’t remember what I had for lunch yesterday) It was a really simple sermon, and I heard the message the first time, but now, at this stage in my life, with these specific trials, it really clicked.

The pastor had likened each of us to a lump of coal. Coal is valuable. It is a commodity. It can be sold for profit, or used as a fuel, but it is also dusty, and can make a mess. Its good to have, but it has its issues!  He then led us further, questioning us, ”What happens to coal after it has been buried for a long time, exposed to heat and intense pressure?”  I’m sure you know where this is going. It turns into a diamond, one of the most beautiful AND one of the strongest substances known to man. The heat and pressure remove impurities and transform the coal into something even more valuable than the original substance… just like our trials do to us, if we let them.

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Thinking about this lesson opened my eyes to what my suffering was doing FOR me, how it was changing me, and my family for the better. I was learning how to “let go and let God,” more. I learned the grace of receiving, rather than always being the giver. I learned to be more thankful, YES, more thankful even through these trials, as I appreciated the little things even more. Trips to a friend’s house down the street became a highlight almost as great as a trip to the Caribbean in “better” years. It shifted my entire focus, and re-opened my eyes, it DID change me for the better, and I was grateful, but…

I was also impatient. I wanted my son to be “fixed,” and I wanted it sooner rather than later.

I studied passages in my Bible on patience. I prayed. I turned it over to God, and I mean really turned it over. Then I had another epiphany. I remembered ajoke (and as you recall, my memory isn’t the greatest) and that encouraged me to make another shift.

Have you ever heard the joke about the Christian and the flood? A good faithful man was sitting in his home, when the storm waters started to rise.  The police came to his door and encouraged him to evacuate. He declined, stating that he was a man of faith, and God would take care of him.  The next day, he had to move upstairs, as the floodwaters had taken over his first floor. A rescue worker, in a boat, pulled up to his window, and encouraged him to get in and move to safety. Again, he declined, stating the same reasons (and praying a little harder.)  The next morning, a helicopter crew threw down a ladder when they saw him stranded on his roof, but still, the man held firm in his faith, refusing to waiver.  When the man approached the pearly gates the next day, he asked God “I had faith, I prayed hard, I trusted and believed!  Why didn’t you rescue me?”  God replied, “I sent the police, a boat and a helicopter!  What else did you want me to do?”

Thinking about this made the light bulb go off in my head.  I had gone from complete control, cruising through more on my own than I wanted to admit, to relinquishing complete control, and not * quite* taking on enough.

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In a way, I was like a pendulum- in my good days, I was moving through life my way, with the pendulum cocked all the way back (out of balance and heavy on Kim’s side)- our “trial” caused me to let go (in a good way) but released it to go ALL the way over to the other (God’s) side. I knew now that God wanted me to be somewhere in the middle, a delicate balance of me helping myself with his guidance, then letting go with hope where I could go no further. It made me think of the story of Nehemiah- praying for protection when he was building his wall, but placing half of his workers as guards while the other half continued to work. Trusting God, but also taking action FOR his will.

IT was the shot in the arm I needed. I prayed just as hard, but started to trust my judgment for change in Grant’s treatment when I felt led to do so. I quit waiting for things to happen, and sought out second and third opinions. I started trusting more of my “mommy gut,” where it came to my son and his disease. We changed doctors and treatment plans, and while it took a leap of faith and movement out of our comfort zone, it took action on our part to make it happen. It was the right call.

Although we have had our share of ups and downs, triumphs and setbacks, overall Grant is doing very, very well since we made the changes.

In the meantime, our second son Evan was also diagnosed, but everything has been ok. We have found that balance, and have become “doers” centered in our faith, and confident in God’s ability to put us where we need to be- or to send us there if we will be quiet enough to listen and courageous enough to act.  We may not have our “old” life back, but we are happier in many ways and definitely richer in others.  We may have been squeezed, but we are letting go of the coal, and keep hoping for diamonds in our future. Most importantly, while letting go of the anger and bitterness that were so tempting to hold on to, we have found peace throughout this journey. We have embraced the trials with the GIFTS they have given us, and hope our story will encourage you to do the same.

– Kim Poston Miller

Kim is the mom of two boys with JA, and the author of the book Living With Juvenile Arthritis: A Parent’s Guide, available at most online booksellers, and you can find her blog on  www.livingwithjuvenilearthritis.com

September 13, 2013 - 1:27 pm

Freedom Goguen Martinez - Honored to know such an amazing woman as Kim Poston Miller- Thanks for sharing your struggle with us and how you’ve learned to overcome. Love the diamond analogy- maybe that’s why we are considered “Jewels” in His crown! xo

September 13, 2013 - 1:56 pm

Aimee McCloskey - Beautiful kim .. silver lining to the jdm journey.. the incredible women that have shared the journey with us . X

September 14, 2013 - 1:37 am

Julia Goguen - We are truly blessed who have let go, for whatever reason, of the idea that life needs to be a certain way in order for it to be extraordinary. Our God is not a God of the majority of observed statistics. Our God is …a real God..with no limitations. We are the ones who put him in a box. To understand His blessings is often a matter of letting go of what we have been taught to expect, and freeing our vision to be aligned with his truth and perspective.

September 14, 2013 - 3:58 pm

Erika Kirsten Maddox - Kim you have no idea how much this spoke to me today. Thank you my friend. Much love.

September 17, 2013 - 12:42 pm

Sissy Taylor - Thank you Kim Poston Miller – we are honored to know so many inspiring families brought together by one (or 2) ugly diseases.

November 26, 2013 - 9:20 am

Hope Floats - Living With Juvenile Arthritis - […] to find a way to pick yourself up, dust yourself off, and make the best of it. Despite the bad, you may find some good, or even better things (yes, I did actually say that.) that come out of the horrible situation […]

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