leaving the battlefield

Over the years, we have been working and praying toward life becoming just a little easier. Hoping for less pain and more joy for Riley, a little more sleep, a few less knocks, a little less struggle… Easier never really comes along despite our efforts; it simply changes. bday celebration

Losing Riley’s insurance coverage in June put me back into battle stance. Battle is not where I want to live our lives.   Insurance coverage for Riley leads us through a strange bureaucracy of which no one appears to have a complete grasp. When I could not solve the lack of insurance on my own, I called upon our Congressman Clawson’s office. A brief internship during my college years had taught me our Representativess have a duty to aid constituents in finding solutions to their problems when solicited. Fortunately, the staff opened their door to Riley and I. I suspect we were the first constituent’s to march in dripping of sweat with wheelchair, sippy bottle, and requesting diaper change space before our meeting yet we were still welcomed warmly. A staffer from Senator Richter’s office joined us, and I was delighted to find a genuinely caring woman determined to follow this through with us. Unfortunately, our local officials were not as familiar with the system as I had hoped though I truly appreciate their willingness to try to help me.

paddleboard 5-31-15 (29)Resigning myself that we were at risk for any health issues Riley encountered for the month of June, I made one last plea to Governor Scott. This got me results! Within 24 hours I was surprised by a phone call from Miss Natasha at the Agency for Health Care Administration, Medikids Policy Unit. She was wonderfully pleasant and efficient. Next time this should be my starting point, live and learn.  By weeks’ end, Miss Natasha had Riley re-enrolled in insurance retroactively for the month of June. Yes, I am still jumping through hoops for everything that was dropped but at least was at least at ease in the event of an emergency and medications stopped being paid out of pocket. We also have our sixteen hours of health aid returning to our home again, yay Pamela!paddleboard 5-31-15 (49)

Along the way we are finding a little peace and joy. It has been a very long time since I felt those in my life. Friends from long ago have driven long out of their way to visit us and meet our children. Ronan and I even managed to join them again at Disney’s Animal Kingdom. John threw me an early birthday celebration last Sunday extravagantly by bringing in two bushels of Maryland Crabs and many friends.

This normal is a lot of work, many details are left undone, but it’s a normal we can tolerate and still find happiness. I trust this trend will continue and life will not always be lived on a battlefield. I am thankful for my beautiful children and loving husband.

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2 Responses to leaving the battlefield

  1. Dearest Satcie, I’ve been a little behind on my blog reading … you have certainly had lots going on. I’m over the moon happy that things have (and what has not is soon to be) been put straight for you and Riley!! Your love, determination, and strength are a great inspiration – just the other day I was unpacking my box of special things at my home office in the city … and there were the shark teeth Riley sent me … I smiled ..Thank you!!! I’m still looking forward to one day meeting over a cup of tea … stay strong! Happy belated birthday … hugs and blessings from Canada .. Celia M. (HighHeeledLife.com)

  2. David Hunte says:

    Thanks so much for sharing your story. I know that yours will be an example for someone else. I pray also that everything continues to follow through for you.


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