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Saturday, September 21, 2013

Paying it forward

This year I’ve been involved in providing Affordable Care Act education to community groups and partners, teaching people what the new health care law means to each of them personally.

I’ve been talking “health care reform” since 2007 when I traveled all across Florida with a bipartisan initiative calling for change. I met hundreds of people and listened to their passionate, often heart-breaking stories of what it meant to be uninsured or underinsured in the country.

And this year after several trainings and countless presentations, I thought I really understood the impact the Affordable Care Act would have on millions of Americans.

I was wrong.

When my youngest daughter had a stroke last month, we quickly learned what it really means not to have health coverage. She is in her late 20s and worked for a major hotel chain – full time, but not quite enough to qualify for benefits.

The last thing you want to think about when you are dealing with a major medical crisis is how you are going to pay the bills. But in the midst of the doctors and surgeons helping care for our daughter, the hospital financial officer came in to her room to talk about just that.

The bills started rolling in, including an almost $30,000 bill for a medi-flight. Overwhelming feelings of desperation set in – please take care of our child, we thought and opened our wallets. We knew full well we would not be able to keep up with the cost of her care, which is now close to $500,000.

Fortunately, for my daughter Washington State has options and we’ve been able to use resources that we never imagined we would need. It’s been a learning experience and a humbling experience. We are thankful for the care she’s receiving at an excellent medical facility.

This week I watched the news in shock as members of Congress who voted to defund the ACA high-fived and laughed. When my member of Congress sent me an email declaring he was proud to “Defund Obamacare, “ I picked up the phone.

I want he and others in Congress who think that makes for a good sound bite to hear from the people who are uninsured and underinsured, and to understand that you don’t high-five when you just told a parent their child won’t have healthcare.

Monday, September 09, 2013

The Unexpected Wake Up Call

5:30 a.m. - Aug. 24, 2013 My younger sister and her husband have two boys younger than 10. My brother-in-law jokes about the countdown he's started until they turn 18. His job will be done. We have three grown children and we tease him often that a parent's job never ends. That's never more true when the phone rings in the early morning hours and a stranger in an emergency room across the country tells you that your 20-something daughter just had a stroke. The stroke caused by a rare disease, Moya Moya, was mild. In just more than two weeks, she's regained a lot of cognitive abilities that she did not have in the first hours and days following the stroke.

She has a long road to recovery and faces two surgeries in the near future -- necessary to avoid any more strokes. As parents, we've had to make gut wrenching decisions over the past few weeks, while trying to allow our daughter to retain her independence. She is an adult. In the first hours after we arrived, I spoke to her and explained to her that we had to sign some legal documents. Though separated from her husband for more than two years, the two have never officially divorced. My experience with AARP has taught me the importance of having documents such as medical power of attorney and advance directives signed. I have talked to older relatives about these needed documents, I've filled them out myself. It never occurred to me that I'd need to talk to my youngest child about filling out these documents in case someone else needed to make medical decisions for her. We discussed. We called the hospital social worker in and I watched painfully as my daughter struggled to spell her own name. I was close to tears, when she looked at me and said, "It's going to be ok, Mom. Thank you for remembering that I needed to sign these papers."

The past three weeks have been an emotional rollercoaster. Friends, colleagues and strangers have helped in ways we could never imagine or expect. We rejoice at each progress, then silently cry at the pain of watching your child use a walker. If you don't know my daughter, you can talk to her and never suspect anything is wrong. That's both a blessing and a curse. She called me crying yesterday when she was given an orange for breakfast and had no idea how to peel it. We know she'll face challenges not only by her limitations but by the expectations of a world who will only see a beautiful young woman and not someone in the midst of healing.

As parents of an adult and as caregivers, we'll be walking a fine line over the next few weeks and months. We'll -- especially me -- will have to fight the urge to wrap her in bubble wrap and not let anything hurt her again. We'll have to let her make decisions, her own decisions and be there to support her when she needs it. The looming surgery on her brain is terrifying, but at the same time we know that this surgery is the only treatment that will assure her a normal life. We also know that normal life might be a few months or even years away. So, parenting continues and like we did when she was a baby, we'll make some mistakes, do some things right and move forward one day at a time.