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Posts Tagged ‘PUBS’

Fifteen years ago, I knelt in a hospital chapel, begging my unborn son would survive the day. My husband and I had a blood incompatibility (PLA1-). Our babies have neonatal alloimmune thrombocytopenia. My body destroys baby platelets in utero. We were going to have a PUBS, to transfuse platelets. It was early enough in the pregnancy that if anything went wrong, he would die.

Before dawn, as I prayed, a lady walked in, prayed in the front row, raised her hands in the air, and left silently. I will always believe she was an angel. I felt like Hannah, begging for a child, and her prayer being answered in church. My prayer that day: God,keep my son safe.

When our teens went white-water rafting, I begged God again. I watched rafting youtubes after the left.  When I saw the crashes, I stormed heaven again. When they made their first ski trip alone, I prayed them through the day. My prayer: God, bring my children home unharmed.

When we went hiking in the Smokies and my teens took a trail without telling us, I prayed. My ankle was sprained; my husband had helped me manage the Laurel Falls trail with a cane. Our kids didn’t want to go at my slower pace. When we got to the top of the trail, they were gone. My husband left to find them on the higher trail, while I sat on a bench, with my cane, waiting till they were found. For two hours, I waited. My prayer that day: God, bring my family back home. That was followed with prayers of God, how do I get back down this mountain if they don’t get back soon and Lord, I gotta go, there is no bathroom, and please help me not wet my pants.

Then they leave on bus trips. I fuss details and tell them survival strategies from my travels. I watch them board the bus and wait until the bus leaves. My prayers have now changed.

Hannah had a son and when the time came, she let him go to serve Elijah. When Samuel left, he heard the voice of God and discovered his calling.

Now it’s my turn. Let go of my children, a step at a time before they leave for college. When they leave now,  they may discover their calling. Their story has become their own, and I’m becoming a background pray-er.

Now my prayer is: Please God, help them hear your call so I know they’ll always be home.

Hopefully that prayer won’t be followed by, Lord, help this middle-aged mama not wet her pants.

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Squeaky wheels get the grease. I’ve effectively used the same advocacy steps in tough medical, educational, and insurance challenges.

My challenges?

  1. Medical – because of a rare blood incompatibility (PLA1-), I destroy baby platelets. My son’s pregnancy included 4 PUBS, 5 weeks of high dose IvIgg treatments, and a month-long hospital stay.
  2. Educational – 1 of my children needed intensive early intervention.
  3. Insurance – 10 years ago, our home burned, and we had to rebuild.

I used the same steps to get my son medical treatment he needed, obtained needed speech therapy, and rebuild our home.

  1. Assess. Determine the issues, the players, and your resources.
  2. Organize. I use binders with dividers and prep like I’m an attorney getting ready for trial. During my son’s pregnancy, I kept a file of all diagnoses, lab results, and insurance correpondence. We took it to each appointment and procedure. With our IEP meetings, I kept a binder with diagnoses, insurance correspondence, school correspondence, along with applicable state and federal laws. For our fire recovery, I compiled a file bucket for claim information, orders, and contractor estimates.
  3. Plan for meetings. Before tough meetings, write your talking points. Simplify them to 3-4 points and 1 to 2 goals. Keep those in front of you to stay focused. Just before a tough meeting, I pray, asking God to help me do what’s needed.
  4. Delegate. Evaluate your talent pool and delegate. Delegate roles during meetings – who argues, who takes note, and who’s the good cop.
  5. Find experts. During my son’s pregnancy, I found the world’s leading expert in New York, spoke with him, and convinced insurance to cover his consultation. With our speech therapy issue, I found the world’s leading expert (at Vanderbilt in Nashville, TN) in his problem, took my son to meet him and be diagnosed, and asked him to help us advocate for services in our local school system. When we disagreed with our fire reconstruction contractor on replacement of a bedroom ceiling, I brought in an engineer friend who backed up my concerns; after it was demolished, they found mold growing in it post fire.
  6. Use the Internet. Tweet, email, and blog to find other resources.

Sometimes, with those you love, your job is to be the squeaky wheel. Your agenda is their health and well-being – not policy, protocol, or bottom lines. Squeak loud, early, and often till you get the needed grease.

This is a chess game – with lifechanging stakes. Sometimes, the survival of a crisis depends on who’s the best advocate.

Advocate. Protect Your Own.

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