Bill's AFO Appt Aug 2016 SNAG-0000 SNAG-0000

At Mr. Bills!

Strap in folks, because I’m giving you a glimpse into one of our rough “medical days” we recently experienced.  Now, this may appear to be a rant, or a pity party, or a long monologue with my feet firmly planted on my “soap-box”, but  just a day (like many other days) we’ve had while on this Journey with our Precious Rhema.  I share this “day” not to garner sympathy and certainly not to blast the parties involved.   I share this “day”, this experience, for two reasons:  1- in the hopes it encourages a fellow mamma on the same journey; she is not alone in the struggle and 2-to shed light on the uneducated policy makers just how policies and red-tape impact our lives.

Rhema’s AFO’s have 2 pieces that have fallen off, the velcro is peeling off the sides, they are slipping up and off her heels and leaving marks on her ankles.  Rhema’s KAFO’s are too tight at the top and are leaving red marks on her upper thighs.  All of these issues make for potential pressure sores and an uncomfortable, uncooperative Rhema and walking experience.   The last time she has pressure sores it took MONTHS to heal and it delayed her walking progress by 6 months!  So having damaged equipment is something we take very seriously.

So, we followed procedure and notified our local CRS office of our need to get both sets minor repairs.  We made the appointment, they booked our hotel and we were off on a road trip to see our favorite Ortho-guy, Mr. Bill.  I took off work from my part-time job and Rhema missed a day of her beloved school.  We met Mr. Bill, who was so surprised to see how much Rhema has grown and he made all the notes on the much needed repairs.  Our second appointment with him later the same day we would have picked up the repaired braces and headed home.   On our drive back to the hotel to gather our suitcases my phone range.  It was Mr. Bill’s trusty office manager; she sounded worried.  The explained to us that until the CRS office signed off on the repairs, Bill could not do any of the repair work.  Now, since CRS knew we were up to see Bill and had booked our hotel for us (with their approval) I assumed that everything was approved.  WRONG!  I made a call to our case worker who, being just the messenger, informed me that the repairs were not “approved” and there was no one there in the office who could approve it!

I’m a resourceful mamma, who does not take setbacks sitting-down when it comes to what Rhema needs, so I got on the phone.  I spoke to 8, count it, EIGHT voice mails in the CRS main office only to discover that EVERYONE was gone that afternoon to a big meeting.  It was futile to keep calling.  A sweet intake worker took down the information for me and noted Rhema’s file about the issue.  As the hours flew by I saw the likelihood of Rhema getting her braces on that day dwindle.   I called Mr Bill’s office manager and she and I both crossed our fingers that if we stayed one more night that we could get all this sorted by the morning.  I made one last ditch effort to call her Physician who quickly emailed his previous Clinic notes and a brand new prescription for “repairs” to CRS and to Mr. Bills office.  Surely, having all this documentation would be sufficient to allow us not to make another 4 hour drive back up to where we were standing, ready to get her braces.  NOPE!  Our sweet case worker even called her Director and explained all the documentation we had provided.  The answer came, “Nope, Nada, Negatory!”  The Director said the “order for repair must come from a formal Clinic”  which would was 4 weeks away.

So, here’s the picture:  I’m parked at Mr. Bill’s, in the parking lot, and even with all the documentation from the physician, due to POLICY Rhema’s needs would not be met that day!  So, here is the impact on us as a family:  406 miles on my vehicle & tires, $70 in fuel, missing 1 whole day of income from my job, and missing my husbands surgery for which his parents had to take him and care for him in my absence.   Here is the impact on Rhema: Rhema missed a day of school and 3 therapies (2 in school and 1 clinic day), she does not have her either set of braces corrected and for 4 weeks will have minimal walking practice and will be at high risk for pressure sores.   ALL because of a POLICY!   Not to mention, that in 4 weeks we will again, have to drive the 406 mile round trip, pay the fuel, Rhema will miss school and I will miss work.  Again, because of POLICY!

Yes, I admit I do feel a little better, as I peck out this experience on my keyboard; to finally get it off my chest is somewhat cathartic.  Nevertheless, my goal in sharing this experience is not to merely express my frustration, it is to shine a BRIGHT SPOTLIGHT for those in positions of authority to feel the weight of their policies.  For policy makers to see the IMPACT the policies have on the very children and families they are there to help!  I GUARANTEE you that wholeheartedly I would change the fact that my little girl needs these devices for her daily life in a fraction of a second if I could; but for now, this is her Journey and we are on this ride with her.  If you are such a person reading this story, PLEASE, the next time you are reviewing policy or creating new ones, please seek advice/input from THOSE INDIVIDUALS your policy will directly impact!  On paper things can look great, in PRACTICE it can create barriers for the very lives you are there to protect and serve.

I also hope this reaches some mamma out there on a similar Journey to know that she is not alone.  There is no doubt that she has experience barriers, experienced defeating days and has wept when she could not provide for her child.  She is not on this Journey alone.  So, sweet mamma who reads this, I will tell you what I told myself on that long 4 hour drive home with those broken braces.  Tomorrow is a new day.  You have not failed.  The grief you feel is real; it comes when we know that our child is need of something that, in this moment, we can not give them.  Hold you head up high in knowing that you’ve done all you can and tomorrow is another day to continue the fight.  And as for me, I know that in my heart that, however things play-out, that my God will provide.  Some way.  Some how.  My God has not once failed me; it’s impossible for Him to do so.  Even with the loss of income, even with the loss of time, even with the potential of damage to my daughter’s fragile, nerve damaged skin.  Even in these storms, my God will stain us and protect us.  Dwelling on THAT FACT and not the reality of what we’d experienced this day, is what I choose to focus on.  So, sweet mamma, if you do not know the Person that provides me this Peace that “passes understanding”, please feel free to reach out and I will introduce you to Him.

This matter is not resolved; we are currently still experiencing set-backs.  We covet your prayers on this matter; for wisdom and discernment for us, Rhema’s parents.  And we covet your prayers for a quick resolution to getting what Rhema needs.  As always, we send hugs and much love to you all, our precious friends and family who pray.

Blessings!

Rhema’s Mamma

PS.  On a happy note, Rhema enjoyed her 1st Push-up Icy Pop, while mamma was working the phone.  I love it that even in the storms of life, she doesn’t have any idea what all is going on.  In the midst, she get to do a new thing and enjoy herself!

1st Push Up August 2015 SNAG-0001 SNAG-0000