At last!

As readers will remember, last fall on my journey I stopped to visit Senator Michael Crapo (ID) in Washington, D. C. It was a great 15 minutes of sharing my concerns with him about people with brain injuries and the limited recovery opportunities they have, especially if the patient has no health insurance.

Last week I told you I would have something special to announce. Now I can share.

Senator Crapo will be in Pocatello, Idaho on May 28th, to speak at and moderate Idaho's first Traumatic Brain Injury Summit at the Stephens Performing Arts Center at ISU.  I am proud that he is going to be there. This is a giant first step for the people in Idaho who have a traumatic brain injury.

Please let Senator Crapo know how much you appreciate his interest in brain injuries.

Please share the flyer with all you know.

Brenna's problems with her brain began with a concussion in 2009. We did not know how critical a concussion is. I know now that there is no such thing as a "simple" concussion. All should be taken seriously and monitored carefully.  Thirteen months later, after her 4th eye repair surgery, Brenna suffered her anoxic brain injury. From there, she entered into a world where anoxics too often are ignored for treatment. From her seat in Heaven, I know she would be smiling if she could see this day.

In Brenna's honor, I will be on the panel to bring insight into what families face when they have no health care and tragedy happens. Brenna was one of those who could not obtain health insurance because of a pre-existing condition. She was one of the unfortunates. Her mother could not buy her the treatment she needed.

If you can be in Pocatello, please come and support someone you know who has a brain injury.

The Taskmaster

Last fall, before I began my long journey across the country to visit families and brain injury facilities, a gentleman I dubbed "The Taskmaster" helped me get everything in order for the trip. He created questions for me and had me not only write the answers, but practice giving them. He has been well versed in the political arena for over 40 years and ensured that I not only took the right steps to set up an appointment to speak with my senator but had my concerns consolidated in an orderly manner. Since I came back to Idaho in Dec, he has been working on another project to be announced early next week.

Last week the Taskmaster was hospitalized with congestive heart failure. For a few days, things were touch and go. Today his color is much better, although he still tires easily. His doctors hope to  release from the hospital by the end of the week.

Many people have prayed for his healing. He is appreciative of those prayers. For those who have prayed for him, he is grateful. God hears. God answers.

Please continue to keep the Taskmaster in your prayers.

Four years ago

Four years ago, on April 14, 2009, Brenna began her journey through brain injury recovery with a concussion caused by an inattentive young driver, hitting us in the rear end of the pickup, and totaling us out. Brenna spent four days in the hospital without the admitting neurologist ever darkening her hospital door to see her again. She did see him for a follow up a month later, but he never checked her brain again, nor did he caution me to carefully monitor her, that the "simple" concussion could have drastic consequences.

Brenna's vision began to change. She lost her depth perception and one day, laid down the keys and never drove again. When I discovered that she was working on her class assignments, with words on her monitor increased to only 3-4 words at a time, and she was using only one eye for reading, I took her to a doctor. No wonder her assignments took her so long. No wonder she was so frustrated at team mates who did incomplete work, leaving her to polish the assignment and in some cases, complete what they should have done!

Her left retina was completely detached. Four surgeries later, there was nothing more to do with the eye. The retina could not be fixed. Twenty four hours later, my only beloved child was comatose. The doctors gave me no answers. In my heart, I am not sure they looked really hard. They assured me Brenna did not have a heart attack, stroke, hemorrhage, or aneurysm, or anything that the average person would know to ask. Nor did they tell me that a hospital with a brain injury trauma center was less than 5 miles away. The doctor said there was nothing more for Brenna.

My little girl struggled for 16 months to recover in a broken health care system that is not designed for the recovery of a person with a hypoxic-anoxic injury. She was a person, a human being who deserved much better than she received at the hands of the system, a system that has been declining for the last 30 years. She wasn't a vegetable and she wasn't a warehouse of spare parts.

In her honor, I am establishing Brenna's Hope Foundation, waiting to hear from the IRS for their approval. In her honor, I speak on behalf of others so that change can come in how people with a brain injury are rehabilitated. In her honor, I am working on a project that I cannot announce yet that will give me a foot in the door to not only educate others about Brenna's journey, but also to encourage and inspire those who can made a difference to do so.

It all began in 2009 with a concussion. I cannot let her journey end.

God bless and thanks to all for your support and encouragement over these past years. Brenna would want you to know she is grateful to each of you.

Pam, Brenna's proud mother

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PVS - Ban that term

I keep hearing from people whose doctors are quick to diagnose persistent vegetative state (PVS). This term is dehumanizing to people. Ending that terminology begins with those of us who walk this journey either ourselves or with a loved one. 

People are not vegetables. They don't grow in gardens. They can't be sold in the produce department. 

People share wisdom and laughter. When was the last time you heard a vegetable laugh...or cry? When was the last time you gained wisdom from a vegetable? Never.

When was the last time you snuggled next to a vegetable and said, "Ah, this is life."?Never.

People are PEOPLE. People are not vegetables.

Let's stamp out that ugly word NOW. Let your voice be heard.

Tell the President. Tell Congress. Tell the CDC. Tell WHO. Speak it from the rooftops.

No more using the term, persistent vegetative state. No more referring to people as vegetables. Anywhere. Any day. Any time.

Silence is not golden

Silence IS an opinion. Those who suffer hypoxic-anoxic brain injuries are crying out for justice. Please let your voice be heard to Congress and the President. We  must speak up for those who cannot stand up for themselves.

18 months and it still hurts

I wish I could affirm that the pain of the loss of a child gets easier to bear. I don't think that ever happens when you lose a child. The pain doesn't get easier. What gets easier is the ability for a parent to hide the pain from others.

That is what I feel. A deep loss and a pain that cuts through my heart and soul. A pain that never goes away. Eighteen months ago, I told my daughter that it was alright to leave me, Go to Granddaddy I said. But, oh how I longed to keep her with me. If only I could have waved a magic wand and erased those 16 1/2 months of pain for her. But it wasn't to be. I had to release her to our loving God.

I look happy on the outside, but inside my heart hurts. I miss all the times we had together. I miss her presence. I miss HER! No one will ever replace her in my heart, in my life.

The pain won't go away, but when I go outside that door, no one will see how deeply I hurt, how deeply I long for just one more glimpse of my only beloved child, Brenna Deshawn.

And there are days when I just feel tired, tired of having to be strong alone. That is what holidays do to me, Zap my strength and remind me again, that the most important person in my life is no longer with me. Some days I just wish there were someone who would let me lean on them to carry my grief for just a few minutes.

Let me be weak. Don't expect me to stand strong all the time. Some days I just can't do that. Not for anyone.

March is Brain Injury Awareness Month---every year. Eleven more months until it rolls around again.

This is eleven months to educate others about brain injury, to teach others to reach out and touch someone they love who has a brain injury, to teach others that anyone with a brain injury is a human being, a person who has hopes and dreams, a person who may be locked in and can't find their way out without help from family and friends.

Eleven months to prepare for Brain Injury Awareness Month 2014.

Let's get things rolling. Let's plan.

Medicare Therapy Caps

For those families facing therapy obstacles for a brain injury, please read this page for the Medicare guidelines for caps on therapies. In my opinion, a brain injury should not be limited to the same caps as other less challenging medical health issues.

http://www.cms.gov/research-statistics-data-and-systems/monitoring-programs/medical-review/therapycap.html

Day 12, Brain Injury Awareness Month

March 12, 2013

Please share this information.

Day 12 of Brain Injury Awareness Month. USA families and patients...If you live in the Congressional district of anyone on the Congressional Brain Injury Task Force, give them a call today. FAX them if you can. Emails aren't as successful. Too easy to delete and ignore. If you send a snail mail letter, use non-white paper/envelope so it stands out in the pile of other mail they get.

http://www.pascrell.house.gov/work/braininjury.shtml