To Chaplain Ruth with grateful thanks

Today I spent the afternoon at the hospital where Brenna spent her last days. A friend we met at Life Care nursing home, Joyce Burnett, was having her bladder removed. I was able to spend time with her sister and brother-in-law. They are very concerned about Joyce and I could feel their love for her shining through. They are truly God's people. They remembered hearing about Brenna.

Then I stopped by to see Chaplain Ruth. I met Chaplain Ruth in the ER last September on that fateful night when Brenna was admitted to the hospital with her sudden cardiac arrest. She stood by me and let me cry or vent, whatever I needed to do.

Ruth and her colleague Chaplain Tom were my strength through those nightmarish days and nights, when they allowed me to come to terms in my own way with the impending loss of the best person in my life.

Ruth reminded me of a conversation we had shortly after Brenna was admitted last year. I don't remember all the conversation. What I did remember was almost biting her head off and saying, "Don't start with the hospice jargon with me. I have heard enough of that."

In spite of that, Ruth stayed by me.

Thank you, Ruth, for all the time. Thank you for your encouragement. Thank you for being the special you that you are.

You are truly one of God's people.

God bless and keep.

God's Promise Fullfilled

Thirty years ago this week, a very precious person in my life died in a tragic auto/motorcycle accident in Oklahoma City. My little brother, the one person in my life who loved me unconditionally (at least until then), was killed by a young man who ran a stop sign, throwing Chisai off his motorcycle 68 feet through the air.

I loved that little brother. My mother helped deliver him. The nurse in the Japanese maternity hospital handed that little bundle to me and the family walked with him into the next room to watch as they cleaned his throat and washed him up. Our big brother Eldon brought Chisai home in a taxi when he was 10 hours old. From the time he was old enough to toddle, he was my constant shadow. He had a smile as big as all outdoors. He cared for the underdogs in life and championed their causes. When Ted died that day, a part of me went with him.

While home for his funeral, the family discussed the impending birth of a cousin's child. Out of the blue, I announced that my husband and I would be adopting a baby within a year. When I said that, we had not filed any papers with any agency for adoption. The state had a four year waiting list and was not accepting applications.

After I went back home, I delayed  turning in the paperwork with an agency in north Idaho. I wanted to be sure that a baby was the desire of my husband's heart. In September of 1982, my husband insisted that I send in the application.

When the social worker came for the home study in late September, we talked about Chisai and my dad. She asked me how long it had been since my father died. I looked at the clock. I said, "One year ago right now, my daddy drew his last breath."

Over the following months, we heard about babies up for adoption. They weren't ours. Then I learned about one due on our anniversary. I claimed that baby as ours even though the social worker said there was no way that baby could be ours..

I prepared for the baby. I prepared for a girl. I prayed for the mother of the baby.

I made a promise to God. I promised God that if he chose not to put a baby in our home by the time I turned 36 that summer, I would never ask again.

I made a more important promise. I promised God that if he gave me a child, she would be raised in HIS house.

On our sixth anniversary, God gave me Brenna Deshawn Dowd, the child of my heart, the most beautiful baby I had ever seen. My heart fell completely in love with that little turned up nose and the little rosebud mouth. She was born nine months after I made the announcement to the family that within a year, we would have a child.

I committed myself to her. Not just for the good times. Not just for the days of good health. The committment  was for all our days.

I could not have born a child more like me. This child came with so many traits that reminded me of the granddaddy and uncle Brenna never knew. I often said, "Somewhere between earth and heaven, they marked her."

God kept his promise to me. I did my best to keep my promise to him. I loved her forever and always, and forever and always I will continue to love her.

My heart aches. My heart grieves. On the day my little girl joined hands with Jesus, I knew why my mother always ached for Chisai. I knew why Aunt Jennie longed to be with her daughter Joyce. I understood how my Grandmother hurt even 50 years after the loss of her first born. I understood the pain my cousin felt at the loss of two daughters.

And I understood that no one else can fill the gap. There is no one who can take that empty place in a parent's heart.

My heart says, "What a day that will be when Jesus reunites me with my precious Brenna."

But, until then, I must stay focused on the job left behind for me to do. I cannot allow myself to be sidetracked by "fun" trips. I must get the message to Congress and the Senate. What happened to Brenna must stop happening to others. There is a better way. God's way.

The rest of Brenna's adoption story is told in her book: Condemned to Die: Ask me how. Tell me why, now in final editorial review.   After that book is published, watch for Gibbs' Story: Pawprints in the Heart.

To see your taxpayer dollars being wasted, please visit Senator Coburn's site.

http://www.coburn.senate.gov/public//index.cfm?a=Files.Serve&File_id=b69a6ebd-7ebe-41b7-bb03-c25a5e194365

Read his list of 100 projects YOU paid for. And they say there is no money for even the smallest grant to research hypoxic or anoxic brain injury treatment and rehabilitation.

Doctors rely on outdated "studies" to tell you to "let go". Even the insurance companies can't find up-to-date information. Why? Who is funding current studies for patients with hypoxic or anoxic brain injuries? Finding it is like looking for the proverbial needle in a haystack...I am still looking...and someone keeps adding more hay to the stack.

WHERE are the new studies on hypoxic or anoxic brain injuries?

No family member should have to hunt through every government agency, looking for hypoxic or anoxic rehabilitation and treatment answers.

Hypoxic and anoxic brain injuries should certainly have a higher priority than, "Why do chimps throw feces?" Check it out. THAT study is on Sen. Coburn's waste list.

Some of the grants he lists could be Eagle Scout projects.

Counting and identifying trees could be a project for a garden club.

NO MONEY needed to change hands for these projects.

Our govenment can fund a site to show gay men how to have safe sex...yet the same government can't or won't fund current studies on hypoxic and anoxic brain injury treatment and rehabilitation. Minnesota researchers got the funds for THAT project. The project was called Sexpulse. 

 GIVE ME A BREAK! 

For those who believe no one with a hypoxic or anoxic 

brain injury should receive treatment and rehabilitation...

JUDGMENT DAY IS COMING!

For those who believe only the wealthy deserve treatment

and rehabilitation of a hypoxic or anoxic brain injury...

JUDGMENT DAY IS COMING!

For those who say a person with a hypoxic or anoxic

brain injury takes up too much time and money...

JUDGMENT DAY IS COMING!

The great United States of America fluffs off MILLIONS

of taxpayer dollars each year, yet refuses to offer rehabilitation

to patients with a hypoxic or anoxic brain injury.

JUDGMENT DAY IS COMING!

Father, Forgive Them

Little foxes spoil the vines

Please explain to this taxpayer, who was denied rehabilitation for her daughter because working with her was too expensive and too time consuming, just WHY we even THINK of funding this kind of expense. The government should let a group of average citizens make the decisions on cutting out this kind of gristle. See, it isn't even fat. It is gristle which should cause anyone to choke.

46) Taxpayer Money to Study How College Students Use Mobile Devices for Social Networking – (IN) $764,825

The National Science Foundation (NSF) awarded over $760,000 to the University of Notre Dame to study the wireless and social networking habits of college freshmen. ―Don‘t college kids have any shame? They‘ll spill their guts on Facebook before talking to a real live person,‖ commented a press release touting the project. It made no mention of a public policy benefit to the taxpayer-funded research.

Two hundred and fifty participants will receive phones, each containing a ―lightweight agent that tracks how students use the phones and how they interact digitally with fellow students.‖

The monitoring will include:

 Location data, such as proximity to other participants;

 Digital communications, such as social networking, email or texting;

 Digital marketplace, such as app purchases, usage and music.

―We are honored to partner with such a highly respected university on this landmark study,‖said Sprint CEO Donald Hesse, who happens to be a graduate of Notre Dame.

Looks to me like our government will fund ANYTHING but hypoxic/anoxic brain injury research.

Wasteful Spending

This is from Sen. Coburn of OK on wasteful spending.

And they say there is NO money for Brain Injury Rehabilitation. Take a look at what we WILL pay for. Just think of how far THIS $35.4 million could do for research and rehabilitation of people with brain injuries. Then go to Sen. Coburn's site to see other foolishness.
Despite a federal budget crisis, taxpayers will be cutting checks this year to both political parties that could ―help pay for the stages, confetti, balloons, food, and booze‖ for their political conventions.2 The funds that are used to cover the conventions come from the Presidential Election Campaign Fund (PECF).
...
This year each political party will receive a $17.7 million check that will pay a sizable portion of the convention costs. The PECF money will be distributed to each of the
political convention committee‘s bank accounts.
 
Here's another great waste of taxpayers' money. Serious problems in the USA and we fund THIS. Please Mr. Representative, tell me ONE MORE TIME that MY DAUGHTER IS A BUDGET ISSUE!!!

85) Study of Online Dating – (NY) $606,000  The Internet is not only a place of news and information, but it is also used for finding friendship, romance, and other activities. Researchers at Columbia University received over $600,000 to study how heterosexuals use the internet to meet one another, and how that activity  influences their sexual behavior.

http://www.coburn.senate.gov/public//index.cfm?a=Files.Serve&File_id=b69a6ebd-7ebe-41b7-bb03-c25a5e194365

No money for Hypoxic/Anoxic Brain Rehab but we fund THIS!

And they say there is NO money for Brain Injury Rehabilitation. Take a look at what we WILL pay for. Just think of how far THIS $35.4 million could do for research and rehabilitation of people with brain injuries. Then go to Sen. Coburn's site to see other foolishness.

This is from Sen. Coburn of OK on wasteful spending.

Despite a federal budget crisis, taxpayers will be cutting checks this year to both political parties that could ―help pay for the stages, confetti, balloons, food, and booze‖ for their political conventions.2 The funds that are used to cover the conventions come from the Presidential Election Campaign Fund (PECF).

This year each political party will receive a $17.7 million check that will pay a sizable portion of the convention costs. The PECF money will be distributed to each of the political convention committee‘s bank accounts.

http://www.coburn.senate.gov/public//index.cfm?a=Files.Serve&File_id=b69a6ebd-7ebe-41b7-bb03-c25a5e194365

WHAT ABOUT BRENNA'S RIGHT TO LIFE?

When I hear all the rhetoric over "right to life", my heart screams, WHAT ABOUT BRENNA'S RIGHT TO LIFE? What about the thousands each day who suffer some kind of brain injury and are ignored???

How can they say she wasn't worth the recovery? I see her videos and read her progress sheets and my heart aches even more. Why should a brain injury patient only receive the same amount of recovery days as someone getting artificial knees? There is no logic.

Had Brenna received the type of care in the beginning that she received at a different hospital in the end, I think she would have had a much better outcome. The first hospital was only intent on organ donation and not her survival and recovery. The first hospital should have sent her 4 miles down the interstate to the other regional hospital in town where they had the right kind of equipment and attitude. They didn't tell me anything else existed. They didn't tell me that the second hospital had a brain injury unit. In fact, they told me there WAS nothing else for her.

Millions of dollars have been spent on medical research through the years. Where would we be if there had been no Madame Curie or Jonas Salk?

Only in recovery of a brain injury is society so unwilling to take responsibility to help those patients recover.

Comment for the Day

Society has learned how to legally kill someone it feels unacceptable and convince the world they are right.

Alive in America—Euthanasia

Alive in America—Euthanasia

American’s have bought the lie. Letting someone die is alright. They can say that with a clear conscience while out of the other side of their mouths they claim to be a Christian.

After all, the money can be used in ghettos, yes GHETTOS, rather than save the lives of thousands of people around the world who suffer a brain injury from any health related issue. I heard this tonight. My beloved daughter who NEVER harmed a fly would have been better off had I starved her to death two years ago.

This comment came from a long time professing christian. I say that with a small “C”. Promoting deaths of the innocent is not God’s way. It is murder. Got it? MURDER!

Tell me ONE time when Jesus said, “Let ‘em die!” When he healed the lepers, he didn’t say, “Let ‘em die!” He didn’t say, “Let ‘em die!”  when they came to the Garden to arrest him, and he sure could have called ten thousand angels to save himself. He didn’t say, “Let ‘em die!” on the cross. He said, “Father forgive them for they know not what they do.” He didn’t say, “Let ‘em die!” on that first Easter morning. My Jesus never said, “Let ‘em die!”

Yet those who claim to be followers of my beloved Jesus, easily say, “Let ‘em die!”

I think my God is ashamed of those who promote ending life as if it is just as easy as swatting a fly. Jesus never turned his back on people. This ghetto comment came from a retired physician whose medical training came over 50 years ago.

Suffer a stroke or heart attack that causes brain damage. Let ‘em die!

Come close to drowning? Don’t save them. Let ‘em die!

Have a problem with a surgery and end up with a brain injury? Shut down the machines. Let ‘em die!

Hit a tree and suffer a brain injury? Don’t send the ambulance. Let ‘em die!

Christians can sing, “What a day that will be when my Jesus I shall see,” yet run to the doctor at the drop of a hat to prolong the meeting. Sort of hypocritical!

We can save millions of dollars in health care. The concept is simple. Shut down the hospitals and just say, “Let ‘em die!” We don’t have to send out another ambulance, we can just say, “Let ‘em die!”

If “Let ‘em die!” is good enough for my daughter, and Chris, and Adam, and Paul, and Cissi, and George, and Sue and so many others, then it should be good enough for all those who run to the hospital for every ache and pain.

Professing Christians have perfected Hitler’s dream. They have discovered the way to “Let ‘em die!” and have it all be legal. Have they no conscience? Don’t think so.

Since starvation is such a peaceful, painless way to die, then all states should mandate starvation as the method of death for the death penalty. Now THAT would get the protesters out!

Is this where we are in society? I guess the attitude changes if a family has lots of money, if a family can afford every specialist in the world.

Have you ever noticed that none of the wealthy ever claims to have donated the organs of their family members? No, that seems to be left to the poor, the disabled, those who some in society deem undesirable in their world, those are the ones that society says, “Let ‘em die!”

Please tell me when…when did my Jesus ever say, “Let ‘em die!”? It’s easy for Americans to say, “Let ‘em die!” but my Jesus never said it. Jesus said, “Father forgive them for they know not what they do.”

Lobster Dinner

Before Brenna got sick, she saved all our change for lobster dinner in Boston when we went back for the clinical trials for Harvard's cure for Type I diabetes. She was due in Boston two weeks after her brain injury. She missed her appointment. After she got sick, I kept saving my change, adding a paper lobster to the lobster pot I drew for her for every $25 saved.

After she died, I just couldn't use that money on fancy meals for myself. The money was for US and there is no US. But Brenna had a passion to help the Boise Rescue Mission. Today, I donated the money to them. The money will take care of two people for a week at the mission. Brenna would like that.

While I was making the run to the Mission, someone on the radio was talking about a food drive for the Mission. Brenna loved going to Costco, buying for them.

Brenna, Mama delivered the food you would have bought to the Mission and gave them your lobster money. I asked Rev. Roscoe to find something special to do for the Mission. It won't spread far but you always reminded me that we should do our part to help those with less than we had. I miss you girl. Forever and always, your Mama loves and misses you.

Letter to Congressional Brain Injury Task Force

This is the letter I have sent to Rep. Pascrell and Rep. Platts as the Co-Chairs of the Congressional Brain Injury Task Force. Please feel free to use this letter as a guideline if you wish.

Thanks. We CAN save a brain.

Pam
====================================================================

April 10, 2012

The Honorable Bill Pascrell
Co-Chair: Congressional Brain Injury Task Force
2370 Rayburn House Office Building (HOB)
Washington, DC 20515
202-225-5751
202-225-5782 Fax 

Honorable Representative Pascrell:

I am the mother of a young woman who suffered a medically unexplained anoxic brain injury in May 2010. From the very beginning, her journey to recovery was marked with out-dated ideas and opinions, based on non-existent studies regarding anoxic or hypoxic brain injuries. It greatly disturbs me that even today, the Center for Disease Control is not collecting information about anoxic or hypoxic brain injuries as they do for TBI, nor do they offer research opportunities for those who can research ABI treatment and rehabilitation.

Your web site states that the Caucus should consider Acquired and Traumatic brain injury the same. Reality demonstrated to me, and many other families, is that there is no resemblance of an ABI being treated even close to the same as a TBI.

I am deeply concerned about verbiage in H.R. 4238, the Brain Injury Act of 2012 and that Acquired Brain Injury is no longer mentioned in the verbiage.

After much soul searching and researching, I come to you with this suggested change to H.R. 4238, the Brain Injury Act of 2012. I do thank you for your consideration and your time. While I am not one of your constituents, a decision this committee makes has a profound impact on many families across the nation.

After many months and over 6000 hours by my daughter’s side, I have many ideas on how treatment for ABIs can be improved. The 1990 Pepper Commission indicated that three patients can be cared for at home for the cost of one in a nursing home. All I wanted to do was bring my daughter home.

The professionals will give many arguments as to why it costs so much to take care of an ABI. A brain injury rehabilitation hospital in Texas informed me that they have a quota of 35% ABIs that they must treat and were actively working in Congress to get that number reduced. Such an act would be a great disservice to thousands of patients across the country.

I am convinced that given the right resources and training, families can bear much of the responsibility for recovery. It takes time and a familiar environment. However, those suggestions are for another time. I plan on coming to DC soon, bringing my suggestions for change in how anoxic/hypoxic brain injuries are treated.

Sincerely yours:

Pamela G. Dowd
Mom to my beloved Brenna Deshawn

Inc: Suggested change to H.R. 4238, the Brain Injury Act of 2012

 H.R. 4238, the Brain Injury Act of 2012    Suggested changes

An acquired brain injury (ABI) is any injury to the brain that occurs after birth that prevents the normal function of the brain. Traumatic brain injuries and non-traumatic brain injuries are acquired brain injuries.

Acquired Brain Injury

     —Traumatic Brain Injury

     —Non-traumatic brain injury
           —Hypoxic and Anoxic Brain Injury

Traumatic brain injury (TBI) is an insult to the brain from an external mechanical force, possibly leading to permanent or temporary impairment of cognitive, physical, and psychosocial functions, with an associated diminished or altered state of consciousness

Non-traumatic brain injury may be caused by stroke, heart attack, near-drowning, brain tumors, infectious diseases, prolonged high temperature, decrease or loss of oxygen to the brain, metabolic disorders such as diabetic coma, and toxic exposure from substances such as lead, pesticides, drug and alcohol abuse.

========================================================

Representative Platt's contact info:

The Honorable Todd Platts
Co-Chair: Congressional Brain Injury Task Force
2455 Rayburn House Office Building
Washington, DC 20515
Phone: (202) 225-5836
Fax: (202) 226-1000

Here is suggested terminology I have come up with to include in letters to the Congressional Brain Injury Task Force. Adjust it as you wish. These are just ideas you can use for letters to the task force. Others may have a better way of saying things but time is short if we are going to get their attention.
Please check my blog to see the names of the Congressional Brain Injury Task Force. If one of the members lives in your district, please write to them ASAP or people with brain injuries like our family members' will be excluded for another 3-4 years. If you don't live in one of their districts and you know someone who does, write the Committee anyway and then please pass this message to others. Thank you. Pam
========================================================================

New verbage: Using multiple medical and government sources.

An acquired brain injury (ABI) is any injury to the brain that occurs after birth that  prevents the normal function of the brain. Traumatic brain injuries and non-traumatic brain injuries are acquired brain injuries.

Acquired Brain Injury
 —Traumatic Brain Injury
 —Non-Traumatic Brain Injury
      —Hypoxic and Anoxic Brain Injury

Traumatic brain injury (TBI) is an insult to the brain from an external mechanical force, possibly leading to permanent or temporary impairment of cognitive, physical, and psychosocial functions, with an associated diminished or altered state of consciousness.

Non-traumatic brain injury may be caused by stroke, heart attack, near-drowning, brain tumors, infectious diseases, prolonged high temperature, decrease or loss of oxygen to the brain, metabolic disorders such as diabetic coma, and toxic exposure from substances such as lead, pesticides, drug and alcohol abuse.

======================================================================

Please scroll down for the list of members of the Congressional Brain Injury Task Force.

Thank you so much. The brain you save may be your own.

Pam

Members by State/Congressional Brain Injury Task Force

Congressional Brain Injury Task Force—Membership by state—as of       
                                                                                                      12/31/2012         

Hon. Bill Pascrell, Jr. –NJ-8                        Hon. Todd Russell Platts - PA-19
Co-Chair                                                         Co-Chair

BY STATE

ALASKA

Mark Begich, Alaska  (SENATOR)

ALABAMA #                                   

Mike Rogers, AL-03

ARIZONA#

Raúl M. Grijalva, AZ-07

ARKANSAS #

Mike Ross, AR-04

CALIFORNIA #

Joe Baca, CA-43

Howard Berman, CA-28

Brian Bilbray, CA-50

Ken Calvert, CA-44

Lois Capps, CA-23

Bob Filner, CA-51

Darrell Issa, CA-49

Barbara Lee, CA-09

Zoe Lofgren, CA-16

Grace F. Napolitano, CA-38

Linda Sanchez, CA-39

Loretta Sanchez, CA- 47

Brad Sherman, CA-27 

Adam Schiff, CA-29

Mike Thompson, CA-01

Henry Waxman, CA-30

Lynn Woolsey, CA-06

COLORADO

Diana DeGette, CO-01

Earl Perlmutter, CO-07

CONNECTICUT

Joe Courtney, CT-02

John Larson, CT-01

Chris Murphy, CT-05

DISTRICT OF COLUMBIA

Eleanor Holmes-Norton, DC

FLORIDA

Corrine Brown, FL-03

Ileana Ros-Lehtinen, FL-18

Cliff Stearns, FL-06

C. W. Bill Young, FL-10

Tom Rooney, FL-16

HAWAII #

Dan Inouye, HI (SENATOR)

IDAHO

ILLINOIS

 Danny Davis, IL-07

INDIANA #

Andre Carson, IN-07

Joe Donnelly, IN-02

IOWA #

Leonard Boswell IA-03

Bruce Braley, IA-01

Tom Latham, IA-04

David Loebsack, IA-02

LOUISIANA #

Rodney Alexander, LA-05

MAINE

Mike Capuano, MA-08

Edward Markey, MA-07

James McGovern, MA-03

Michael Michaud, ME-02

Richard Neal, MA-02

MARYLAND

Roscoe G. Bartlett, MD-06

C.A. Ruppersberger, MD-02

Chris Van Hollen, MD-08

MICHIGAN

Dale Kildee, MI-05

Thaddeus McCotter, MI-11

Candice Miller, MI-10

Mike Rogers, MI-08

Fred Upton, MI-06

MINNESOTA

Collin Peterson, MN-07

Timothy Walz, MN-01

MISSISSIPPI

Bennie Thompson, MS-02

MISSOURI

Russ Carnahan, MO-03

NEW JERSEY

Robert Andrews, NJ-

Frank LoBiondo, NJ-02

Frank Pallone, NJ-06

Donald Payne, NJ-10

Frank Lautenberg, NJ (SENATOR)

Bob Menendez, NJ (SENATOR)

Rush Holt, NJ-12

Steve Rothman, NJ-09

Jon Runyan, NJ-03

NEW YORK

Joseph Crowley, NY-7

Brian Higgins, NY-27

Maurice Hinchey, NY-22

Carolyn McCarthy, NY-04

Jerrold Nadler, NY-08

Louise Slaughter, NY-28

Paul Tonko, NY-21

Edolphus Towns, NY-10

NORTH CAROLINA

Kay Hagan, NC  (SENATOR)

Walter B. Jones, NC-03

Brad Miller, NC-13

David Price, NC-04

OHIO

Steve Stivers, OH-15

Patrick Tiberi, OH-12

Tim Ryan, OH-17

OREGON

Peter DeFazio, OR-04

PENNSYLVANIA

Jason Altmire, PA-04

Bob Brady, PA-01

Tim Holden, PA-17

Mark Critz, PA-12

Michael Doyle, PA-14

Chaka Fattah, PA-02

Tim Murphy, PA-18

Allyson Schwartz, PA-13

Bill Shuster, PA-09

RHODE ISLAND

James Langevin, RI-2

SOUTH CAROLINA

James Clyburn, SC-06

Joe Wilson, SC-02

SOUTH DAKOTA

Tim Johnson, SD  (SENATOR)

John Thune, SD  (SENATOR)

UTAH

Orrin Hatch, UT  (SENATOR)

VIRGIN ISLANDS

Donna Christensen, VI

VIRGINIA

Jim Moran, VA-08

Bobby Scott VA-03

Robb Wittman, VA-01

TEXAS

Lloyd Doggett, TX-25

Gene Green, TX-29

Ralph Hall, TX-04

Shelia Jackson-Lee, TX-18

Pete Sessions, TX-32

VERMONT

Peter Welch, VT

VIRGINIA

Gerald Connolly, VA-11

Randy Forbes, VA-04

Bob Goodlatte, VA-06

WASHINGTON

James McDermott, WA- 07

Adam Smith, WA-09 

WEST VIRGINIA

Shelly Moore Capito, WV-02

WISCONSIN

Tammy Baldwin, WI-02

Christ is Risen- Just another holiday???

Today was another holiday but to me, it is just  another day without my Beloved Brenna. A day that I could not share with her. I stood in line at a restaurant, waiting to get in to eat. As I watched smiling families arriving, so  happy to be together, my heart tumbled to the floor. The line crept forward as I headed out the door. You see, I just couldn't be there without Brenna. She meant the world to me and eating alone where families are, is just not meant to be, not for me.

Who says Easter should be a commercialized holiday?  The world has forgotten why we celebrate Easter. Easter isn't about bunnies, chickens, and baskets of eggs. Easter isn't about more presents for just another holiday.

This is the day of remembrance, the day when we remember that Jesus not only died for our sins on a cruel cross, this is the day of prophecy fullfilled. The stone was rolled away. JESUS rose from the dead. Just as he said he would.

As I walked into church this morning, having had to park a block away, I couldn't help but wonder about those who only come to church twice a year. What is the conversation at home? How do you tell children who haven't been to church since Christmas why it is important to go on Easter? And why it won't be important again until Christmas comes again?

I cling to the promise that as Jesus rose again, so shall I. I know that as my Redeemer lives, that someday I will sit at his feet. I shall look upon His face. And once again, I will hold my daughter's hand and together we will worship the King for all eternity.

I am attaching a poem I wrote for the Christmas holidays. I feel that though it talks about Christmas, the sentiment stands for all these other holidays, too.

Holiday Grief
Pam Dowd, © 2011

I don’t want to rock around the Christmas tree.
I don’t want to go to holiday tea.
Invite me to dinner but let it ride
Let me think and then decide.

I may not want you to see
Tears of grief that flow from me.
If you see a tear in my eye,
Please don’t tell me not to cry

I don’t want to wear a happy face,
While my heart grieves for that empty place,
My weary heart is broken
And no words spoken

Can heal the cracks within my heart
A place where love was, my child, my heart.
I may not come to hear the choir
Or sit beside a glowing fire.

I may choose to spend the day alone,
But that is my choice, my time at home.
Please don’t tell me what I need.
You made the invitation, planted the seed.

Please don’t be upset
And please don’t fret.
Grief is a season that all must feel.
My heart is broken, but my God is real.

These are my opinions of what has happened to persons suffering from an anoxic or hypoxic brain injury. My opinions on how the medical profession does not treat them. My opinions on how Congress ignores them.

I keep hoping that something new will pop up when I search the Center for Disease Control site . I keep hoping that the CDC will give the same emphasis to anoxic/hypoxic brain injury that they give to TBIs. I keep hoping that our society will wake up and insist that Congress will insist that the CDC acknowledges ABIs the same as TBI.

Pardon me if a family member who has a loved one with an acquired brain injury is confused on where to go for information. The CDC puts a special emphasis on TBI (Traumatic Brain Injury), specifically sports' brain injuries. The Congressional Brain Injury Task Force has changed their original "mission" statement to say that all brain injuries should be treated as ABI (Acquired Brain Injury). Try to get your congressman to dig information out of THAT committee. Since it is over at the House, the Senators don't want to step on toes. MY congressman says that treating an ABI is a budget issue but, bless his heart, he will "remember" my daughter during budget hearings.

Try telling this to those brain rehabilitation hospitals that accept millions of dollars for rehabilation of brain injuries every year. They do not want you if you have an anoxic/hypoxic brain injury. Have a heart attack or stroke and end up with a brain injury? They don't care. According to the evaluator I spoke to, you will take too much of their time and energy.

Check this link to find out the names of members of this Congressional task force. And while on the site, note that this task force hasn't sent out a newsletter since February 2011. They have existed for years, much longer than the first newsletter in 2008.

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

For questions about the Task Force, contact one of these women. Good luck if you aren't one of their constituents.

     Please contact Rose Hacking

     (rose.hacking@mail.house.gov; 5-5751) in Rep. Pascrell’s office or

     Mollie Van Lieu

     (Mollie.VanLieu@mail.house.gov; 5-5836) in Rep. Platts’ office
Who is minding the CDC store? When you look at their directory, from A-Z, there is no reference to anoxic, hypoxic, or acquired brain injury. They dwell strictly on traumatic brain injury, with a prominent emphasis on sports' injuries. To hopefully find any information on anoxic/hypoxic (Brenna's type of brain injury), a person has to hunt for it.

There is a gross discrimination in how our goverment collects information and dispenses information about ABI. When you click the links, the CDC is certainly not encouraging research into ABI rehabilitation, yet that doesn't stop medical professionals from quoting non-existent facts and studies when they pressure families into ending life.
     http://www.cdc.gov/TraumaticBrainInjury/

This is their page for TBI, traumatic brain injury. Note the definition does NOT include anoxic or hypoxic. BUT, the Congressional Brain Injury Task Force in the House of Representatives has a short clause that claims ABIs and TBIs should be treated the same. I can't even get ONE of Idaho's elected elites to get information from that task force about the 35% quota of ABIs that the Baylor evaluator told me about.

No wonder the brain injury hospitals ignore patients like Brenna. Congress does. The CDC does. The admissions' hospitals do.

I told them long ago that my Brenna would have been better off treatment wise if she had been drunk and hit a tree. Live clean and suffer a hypoxic brain injury and the government does NOT want to help at all.

The "let 'em die" attitude exists and has for the last 30 years. If that attitude is to come to a schreeching halt, it is up to all Americans to get the job done.

When candidates talk about being "pro-life", ask where they stand on rehabilitation of an anoxic or hypoxic brain injury. Their response will tell you if they really are pro-life. Ignoring those with a brain injury while claiming to be pro-life is like being a little bit pregnant.

Adoption. To tell or not to tell.

My beloved Brenna came into our home by our choice to seek adoption. She was the precious gift of a loving God. God knew the future. He knew the day would come when she needed a mother who loved her unconditionally: one who did not need to “stop and think” about giving her beloved daughter life.

I will forever be grateful to a young woman who entrusted in me the most precious person to have ever come into my life. I loved Brenna before she was born, before I ever knew she was coming. I loved her all the days of her life. I love her still. Not loved, because love never dies. Always and ever, her mama loves her.

As Brenna grew, I pondered the right way to tell Brenna she was adopted. I had seen the personal and emotional devastation caused when my older brother discovered at 34 that he was adopted at birth. It didn’t help that I had learned years before him and not told him. But, it wasn’t my story to tell. His adoption was in another era, a time in our history when adoptions weren’t discussed. Family may have known but no one discussed it.

When I was eleven, my parents adopted my younger brother, Theodore Anthony Blaxton (Chisai). Mom helped deliver him. His mother was from a high class family in Japan. His father was an American GI who came home and “forgot” what he left behind. The nurse brought Chisai downstairs from the maternity room and handed that little baby boy, about five minutes old, to an eleven year old girl and I fell in love. My parents shared the story of his birth with him. His coloring was different than ours so it was obvious that he was not of our blood. As Chisai grew, he talked about the mother who gave him birth and always wanted to meet her. But, he never forgot who Mom was, the one who loved him unconditionally, who loved him forever and always.

Chisai was killed in a motorcycle/auto accident in April 1982 and never had the opportunity to meet my beloved Brenna. Eldon died in December 2003. He did see Brenna when she was a baby and again when she was six. Eldon was afraid I would not tell Brenna she was adopted. I could not do to Brenna what happened to him. Brenna had to know from the early stages that she was adopted.

I began by telling Brenna a story of adoption of a little boy. Soon she asked if the little boy could have a friend who was also adopted. I asked if the friend had a name. She said, “Can we call his friend Brenna?”

It did hurt when she was older and her friends’ mothers were having babies. She wondered why I didn’t have one. I had to explain to her again about adoption and how her mommie couldn’t have a baby come out of her tummy like her friends’ mommies.

Not long before Brenna became ill with her brain injury, we talked about adoption. I asked Brenna if she missed not having siblings. She said she didn’t. I asked Brenna if she felt left out or disconnected from family because she knew she was adopted. She said she was glad that she had known she came to us by our choice to have her. She felt that not knowing would have been living a lie.

She asked me pointed questions about the “what ifs” in my life. What if…I had read a letter my mother kept hidden for years from a man who wanted to “see” what could happen if we dated? “What if” I had married him? I told her that God knew she was coming and he knew we needed each other. I told her that the man in question had married the right person for him, that I had not loved him ever. I told her that God knew that if I made any other choices in life that did not include her father, I would have missed the blessing of having HER in my life.

I wanted to assure Brenna that SHE was a blessing. She was the day she was born. She was all the days of her life. She still is my biggest blessing.

Always and ever, my heart will love my only beloved daughter, Brenna Deshawn.

Condemned to Die: Ask me how. Tell me why.  will be out of editorial review by next Friday. At last the picture of Brenna's Miracle Tree is acceptable for the cover. Mom actually got it to standards that EXCEED specifications, which is good. It just takes a long time to teach an old dog new tricks! :)

I sent in a mockup of my idea for the cover last week. Now the designer has an idea of what I want, only he or she will have a more professional outcome.

For those who know me, you may wonder about the name of the author. I have chosen to use my maiden name with my married name. Many reasons for that. Blaxton-Dowd I like the sound of that.

First: There already IS an author by the name of Pamela Dowd. I didn't want to confuse us.

Second: There is a lawyer by the name of Pamela Dowd. I didn't want her privacy invaded.

Third but most important: My parents would be proud of the book and I want to honor their name.

All during the medical crisis with Brenna, I longed for my father. After he retired from the ministry, he became an activist. Had dad been alive, even at his age (he would have been 90), he would have moved heaven and earth for justice for Brenna.

Through the years, I had called my mother, depending on her listening heart, for strength and support. She gave me emotional support during breast cancer at the age of 27. She did not understand but she gave her support through all the trials of a failed breast reconstruction. I miss those Saturday morning calls with mom.

Fourth: Brenna wanted me to use my maiden name. We talked about last names before she became ill.

I have had days of discouragement, grief, and sorrow. I have had days when I wondered if the book will make a difference. Then I hear the sweet little voice of my only child say, "Mom, it is alright to stand alone when standing alone is the right thing to do."

The Day the Lights went Out

Six months ago today the light went out of my life. My little girl joined hands with Jesus and left me here to complete the mission of God’s plan for her life.

Please don’t tell me that she is in a better place. I know that.

Please don’t tell me she isn’t suffering any more. I know that.

I get it! I GET IT! I GET IT!

All parents who have lost a child GET IT.

Knowing doesn’t take away the loss.

Knowing doesn’t take away the pain.

Brenna’s story is written. Condemned to Die: Ask me how. Tell me why. will be out soon. We are working on the cover design now.

It might help the pain if I believed in my heart that telling her story WILL make a difference.

It might help if I believed that someone, ANYONE who CAN make a difference would care and step up to the plate to MAKE a difference.

It might make a difference if any of the influential anti-health-care reform talking-heads cared enough about anyone but their own circle of supporters to care about those who cannot get the right kind of care because they aren’t in the 1% with the most money.

I hear too many judgmental talking-heads who have never felt this kind of pain, who have never watched their loved ones do without the right kind of treatment and care because her mother just didn’t have the money to buy rehabilitation and therapy; Her mother didn’t have the right kind of money to buy the right kind of doctors; the doctors who would turn over every stone to keep her healthy; and couldn’t provide health insurance because of her pre-existing diabetes.

Get that, you politicians! My child was a diabetic since she was 6. She didn’t choose diabetes. She had insurance until she was 19, then no insurance would accept her. She couldn’t get on Medicaid because she was not pregnant, a single mom, or just out of jail.

Doctors wouldn’t even give her the medicines for her osteoporosis after her brain injury. They gave her Coumadin against my wishes and almost killed her. They almost killed her by letting her potassium get out of balance. They wouldn’t take care of her broken teeth and let the infection get into her heart. Why? Her mother didn’t have enough money to get their attention.

She suffered in two armpit nursing homes because no one in our system cares enough to make those administrators provide good care to the vulnerable. And their attitude trickles down to the staff, knowing that their bosses don’t care, just show up and do as little as they can to prove they arrived at work that day.

Before Brenna became sick with her brain injury, one endocrinologist said, “I don’t have to take care of people like her.” I asked him what he meant. He said, “Welfare.” I responded. “She isn’t welfare. She’s cash.” He said, “Same difference.”

After Brenna suffered her brain injury, doctors refused the osteoporosis medicine because “she isn’t going anywhere”. A nurse outlined all her health history and said, “You have some decisions to make.” As if all those diagnoses made a difference in MY commitment to my daughter! Another nurse, after Brenna had a crisis brought on by the Coumadin said, “We are going to have to make decisions on who gets treated. People who make poor choices in life shouldn’t get treatment.”

Brenna didn’t make a poor life choice. She had a retina repair surgery, had a seizure that locked her chin to her chest, and suffered a hypoxic brain injury.

The lights went out of my life the day I had to let my little girl go.

Yes, I know where she is.

Yes, I know she isn’t suffering any more.

It doesn’t take away the pain of knowing that so many in the medical profession just don’t care enough anymore about the preservation of life.

They made judgment calls that cost my little girl her life. For that, they can stand before God on the Day of Judgment and explain her death and the death of others like her.

I just hope that her book does make a difference.

Anybody out there listening? Anybody out there care?