Monday, April 30, 2012

Bee-ography Monday

This week's bee-ography comes from hydran-mommy to the beautiful Brianna, Barbara:

In 2000 I became pregnant at the age of sixteen and little did I know, or have the capability of understanding, how it would impact my life. It was then when I began a journey that would evolve me into the person I am today. This little miracle gave me a chance to become the person I knew I could be. In return I would give her the same opportunity she gave me.

During my pregnancy I was very scared. I was a good student and tended to be the shy and quiet one. I hid my pregnancy because I was afraid of disappointing those closest to me. I ate well and did what I thought I needed to do. It was not until I was 8 ½ months along until I skipped school and went to the doctor’s office because I was afraid I would start labor in school. It was a very hard decision but I was really considering adoption. I knew I could not support her and her biological father left me once I told him I was pregnant. I did not think I was not ready for the responsibility.

On September 15, 2000 I told my then boyfriend that I was pregnant and that it was not his and that if he did not want to be with me that was okay. I really did love him though so it was heartbreaking to have to tell him that. At that point he hugged me and said that we can do this and that he would stand by my side. I was still trying to decide what I should do but did not understand the urgency of my situation.

On September 16, 2000 at 7:00am I went into labor 2 weeks early. I hadn’t even told everyone that I was pregnant. The sonogram showed that she was breech so I ended up having an emergency c-section. I was all by myself lying on the table with my thoughts when I heard a cry. I can remember saying “That’s my baby” “I have to keep her”. I didn’t get to see her and I thought I was too late to have her as my own. I remember waking up after recovery and telling them “I want her and her name is going to be Brianna”. She was a healthy 5lbs. 6oz. beautiful blue-eyed baby girl and she was mine.

We had no plans but quickly rallied up supplies and had a tremendous family support system. I turned my cds into diapers and our lives were forever changed. We were on a different path than I thought our lives would ever take us but we were happy and we made it work.

Fast-forward five months. My then fiancé’s mom says “I don’t think she can see”. I didn’t believe her but it probably was because I didn’t know any better. She encouraged me to get her into the doctor which was when we were referred to an eye doctor. At the eye doctor she was diagnosed with Optic Nerve Hypoplasia. We were told that it is something that can be grown out of so we were still pretty optimistic. I wear glasses so I didn’t think it was that big of a deal. He did suggest we get an MRI done just to be safe.

On March 29, 2001 Brianna had her first MRI. Some time shortly after we saw the neurologist to get the results. That day will be forever etched in my mind. It was me, my fiancé, and his mother at the doctor visit. He put her x-rays up for us to see. That was the first day I heard of hydranencephaly. That was also the single most heartbreaking day of our lives. It was this very grim prognosis and the doctor offered up nothing positive to us. He said it was just a freak accident of nature and that most of the time these babies get aborted by choice or naturally. He told us to take her home and love her and not bother scheduling our next appointment because she won’t even live six more months.

The first year was the hardest. I lived in constant fear that she would leave us in the middle of the night. I had terrible nightmares. She cried most of the time and there was very little to do but for me to hold her. I never let her leave my sight. After the months went by my grieving for her changed to fighting for her. I realized she was still here and knew there was a reason. Our journey began to rewrite the books. I would not take no for an answer and knew I had to do everything in my power to convince doctors and therapists that my child was worth it. One by one they started coming around. That first neurologist though was only seen many years later just so I could confirm with him that maybe he should change a few things about how he presents himself to families. That felt really good. Now they listen to me and ask me what they need to do to give her the best care that she deserves.

I wish that at that moment of learning of her diagnosis we would have been told that there was hope. There are so many more resources and support groups now than there were when Brianna was first diagnosed. We felt so alone and that we could do nothing for our precious little girl. It is hard to believe that doctors in general do not know much more then they did back then. There is hope though and I see it everyday when I log onto my computer and have conversations with other families that have children that share the same diagnosis. When I look into Brianna’s eyes I know that there is a reason she is here and every child born with hydranencephaly deserves the same chances that we have given her.

She has had some issues with health but none has been a harder battle than the one with her GI tract. Brianna has been on medication for her stomach and bowels since she was two months old. She was always irregular and had problems with intestinal bloating, blockages, acid reflux, digestion, malnutrition, and her latest battle with c-diff. She had a g-tube placed when she was seven. We mainly administered her medications and fluid through it for four years. When we almost lost her to c-diff, she just turned eleven, all I knew that is we wanted her to be around longer we had some changes to make. We stopped feeding her orally as she was choking a lot. We put her on continuous feed. She has had this diet with no additional harsh medications for a couple months and is doing better than she has in her whole life. Her GI tract is regular and she no longer needs my help; everything just works. She is also finally gaining weight.

Brianna developed her seizure disorder when she turned 17 months old. It was frightening to see her go through them but she began taking Dilantin which stopped her seizures. It did increase her gum size so we switched to Phenobarbital when she was three. When she was six her seizure behavior changed and we increased the Phenobarbital and added the Diastat for emergencies. When she was ten she began having severe seizure episodes. I believe it is due to hormonal changes. She is now taking Tegretol with the Phenobarbital to manage them. She has been almost seizure free since she turned eleven. She has never had increase pressure from cerebral spinal fluid so she has never needed a shunt.

Another issue that we have dealt with is her hips. In her second year she had a dislocated hip and a subluxed hip which were from birth. She also had tightening in her hamstrings that was making the dislocation worse. We decided to do her first surgery. She had her adductors released and her hips put back in socket in hopes that they would further develop without the need of a more abrasive surgery. When she was four there was little to no change. We decided to have the adductor release again. She also had a bilateral femoral osteotomy. That worked for the left side but not the right. So when she was seven her right hip socket was reconstructed and she had the adductor release done on that side as well. Her hips are where they should be today but she is having increase tone again in her hamstrings.

The beginning years of Brianna’s life may have been harder. I feel with better knowledge of what can be done to increase the quality of her life we could have avoided some hardships. She is a remarkable young lady. It is hard to believe that she does what she does given only having a small amount of her brain. She is happy 95% of the time. The other 5% she is usually bossing me around because I’m not meeting her needs to her standards.

She loves to have sips of root beer and thinks she needs to have it whenever we go to a restaurant. She will holler until she gets it and then probably holler some more because you aren’t going fast enough. Brianna figured out how to say “drink” so since it is one of the few words she knows she says it quite frequently and smiles because she is so pleased with herself that the word works. If she overhears someone say there is a birthday around or sing happy birthday she wants cake and ice cream. We still give her tastes of food and her favorites are double cheeseburgers, nachos, sweet potatoes, her daddy’s Subway sandwich with peppers, Fun Dip, and cotton candy to name a few.

She loves music. Her favorites are Beyonce, Adele, Rihanna, and any heavy metal with guitar solos. She also loves any song that’s patriotic. Her favorite movies are Charlie and the Chocolate Factory, Rio, and School of Rock. She is learning to communicate with a switch toy and is doing quite well. She especially likes when the switch toy activates her leg massager. 

Brianna’s a Daddy’s girl so she goes hunting with him and even has her own gun. Yes, it is pink. She also loves to play video games with her Daddy and hollers at him at 6:00pm every night like clock work because she knows that’s her time with him. She also has some family favorites, but I won’t mention names. They know who they are and we don’t want any jealousy.

Black Hawk Area Education is where she goes to school and loves all of the hustle and bustle. She gets so excited when the bus comes to pick her up. It is so cute. We strive to include her in all of our activities and anything a typical child would do we try to adapt it so Brianna can be included. She plays baseball in the summer and enjoys swimming and camping. She will fish too but mostly likes the sound of the bull frogs croaking. In the winter she loves to be bundled up and go sledding.

Throughout all of this my fiancé and best friend became my husband. We have learned to grow together with a bond that will last a lifetime and beyond. Brianna’s life has impacted ours now and forever. Through the ups and downs and no matter the distance between us we will be together always. If I could go back in time I would not change a thing. What I would do is look at the sixteen year old girl and let her know that everything will be okay. 

Sunday, April 29, 2012

Contest: Name our BEE!

This is our logo bee... chosen as our foundation's mascot with inspiration from the following quote by Mary Kay Ash which describes little ones living with a diagnosis of hydranencephaly so perfectly:

"Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know it so it goes on flying anyway."

 And he/she needs a name; one that is unique & perfectly fitting to our mission and cause. Come over to our Facebook page & comment on the photo with your idea. If your name is chosen, we will reward you with a coffee mug from our awareness merchandise page. Name will be chosen tomorrow, April 30th at noon eastern time.

Saturday, April 28, 2012

BUZZ: We Need YOUR Help!!

Will you help Global Hydranencephaly Foundation with this endeavor, to be featured on the helmet of Nascar great Jimmie Johnson during an upcoming Spring Cup race? Whether you're a Nascar fan or not, this is a huge opportunity to help us raise awareness... but we need your help!

Simply click the link below for fan submissions and fill out the form. It takes only a few minutes of your time, here is the information you'll need:

Charity Name: Global Hydranencephaly Foundation
Charity Website:
Charity Contact: Alicia Harper
Charity Phone: 573-280-2412
Charity Mission:Through the Global Hydranencephaly Foundation, a greater passion will be shared as families are networked across the globe to ensure every child given this diagnosis has the opportunity to live and thrive in the quality of life they deserve. Families will be offered support, information, guidance, and resources. Through education and awareness campaigns, the medical community will become enlightened to the possibilities that exist for these children and the world will learn to accept this condition as simply an obstacle in the lives of these little miracles.
Charity Email:

Blue Bunny Helmet of Hope

Nominate your favorite charity for the chance to be featured on Jimmie’s helmet, win $10,000 and more.
Click here for fan submissions
Click here for media submissions
Nominations will be accepted until 5:00pm ET on Monday, May 7, 2012. 
About the Blue Bunny Helmet of Hope Program
In its fifth year, the Helmet of Hope program gives fans and media members across the country the opportunity to nominate their favorite charity to be featured on five-time NASCAR Sprint Cup Series Champion Jimmie Johnson’s Sprint Cup helmet for the race at Infineon Raceway on June 24, 2012 in Sonoma, Calif.  This year’s title sponsor for Helmet of Hope is Blue Bunny Ice Cream.  In addition to being featured on the helmet, each charity selected also receives a grant of $10,000 and a Blue Bunny ice cream party.  To date, the program has contributed more than $300,000 to 49 different charities.
 Special thanks to:

Friday, April 27, 2012

Flashback Friday: For the Love of Music

Originally posted at Small Portion of a Life's Journey, April 2010.

For the Love of Music
By Alicia Harper

iPhone, iPod, Computer Speaker
Most all of our little "bees" respond to music in a very positive way, Brayden is no exception... It is even better when associated with bright lights, but it doesn't always have to be. I found this article many, many months ago and was originally intrigued by the fact that this woman was noted as 32 years old living with hydranencephaly. As if that isn't a feat in itself, it also shows the miraculous abilities of the brain.. Regardless of size, portions missing, parts damaged, terminal prognosis... it doesn't matter what the scans look like. Amazing... yet sad, that too often diagnosis of conditions similar to Brayden's of hydranencephaly, becomes a death sentence before it is realized the hidden potential that lies within. 

 Vtech Touch & Learn Musical Bee 

Music stirred her damaged brain

By Dr. S. Allen Counter | March 29, 2005
published in the Boston Globe

Judging normal brain function in a neurologically impaired person is never an easy task. The case of Terri Schiavo illustrates this challenge in a dramatic way.

A Boston-area patient I first saw when she was 32 also proved the point. The woman had been born without the portions of her brain associated with thought and awareness -- a condition called hydranencephaly that's usually fatal prenatally or in infancy. But she had somehow survived, mainly through good custodial care, including being fed pureed foods by a caretaker all of her life. Her eyes were open wide, and she could move her head from side to side, and make groaning sounds, similar to Terri Schiavo. A quadriplegic, the woman was bedridden or strapped to a wheelchair for several hours each day. She weighed 77 pounds and was 4½ feet tall. She could swallow and breathe on her own.

The neurological evaluation revealed that the woman failed to blink in response to objects rapidly approaching her eye, indicating blindness; she had abnormal reflexes, and no clear sensitivity to touch. A bright light shone on one side of her slightly enlarged head revealed a bright red fluid-filled cranium. A subsequent MRI revealed the absence of cerebral hemispheres, with only small remnants of cerebral tissue, and a small brain stem.

The conclusion by the attending doctors was that this woman was unresponsive to sensory stimuli, devoid of any intellectual function, and in a persistent vegetative state.

To confirm these conclusions, she was referred to me for an objective, noninvasive evaluation of her brain's electrical activity and her response to sensory stimulation, including sound, sight and touch. In summary, I found that, although her eyes were open and moving from side to side with her head, there was no brain response to visual input. Similarly, mild electrical stimulation in the fingers and toes traveled up the spinal cord to the brain stem, but no farther in the absence of the cerebral hemispheres.

I was astounded, however, that when I turned on a child's music box in the room, I observed that this hydranencephalic patient turned toward the musical device and began to smile and make sounds, as if she were enjoying the experience. I then tested this observation several times and found a consistent response to sound stimulation. When I conducted a test of electrical activity in her brain stem, the portion of the brain that controls bodily functions like breathing, I was surprised to find that the neurons of the brain stem involved with hearing were normal.

Several more advanced electrophysiological brain measures showed that she had normal hearing response waves, reflecting neural activity in the higher brain stem. She was aware at some level of the sounds and people noises in her environment, and responded to these sounds with the appearance of joyfulness.

I immediately brought her other doctors back into the room, where they began to interact with her in a totally different manner, in some cases holding her hand and trying to speak with her, and treating her more like a normally functioning human being. I was so emotionally moved by her struggle for human definition through the single modality of hearing that I went down to a local electronics shop and bought her an audio cassette player, and some modern and classical music.

She continued to appear to enjoy the audio cassette player and her music until her death some years later.

This patient demonstrated the dilemma we face in determining whether people in an apparent persistent vegetative state, who by all objective measure have little or no function in the cerebral hemispheres, have any residual human capacity that would persuade us to sustain their lives, even by artificial means.

Her case was a reminder of how much we do not understand about the brain, and that even people in an apparent vegetative state may have ways of connecting to the world around them.

Dr. S. Allen Counter is professor of neurology and neurophysiology at Harvard Medical School and the Massachusetts General Hospital.

Might I add, I also tried to email Dr. S. Allen Counter upon discovery of this article and many others he was noted in association with hydranencephaly... sadly, never to get a reply. I wish there were more easily accessible doctors that believe as Dr. Counter does, in the ability to overcome these obstacles that are deemed medically impossible. Maybe he, or another, will find us sometime along the way...  

Thursday, April 26, 2012

Thoughtful Thursday: The All-Transforming Power of Love

Quality of life has been a major topic of discussion, and a very sensitive one to me as the mother of a baby who was given a death sentence rather than a "welcome to the world" at birth; as well as having an overfilled heart for all of our little ones who have been given the same prognosis. Hydranencephaly sounds like a horrible way to live, and if I hadn't personally witnessed a different life... and believe in miracles beyond our control, then I may question the fact as well. However, I can assure anyone who questions my son's quality of life... that he is living a very happy, high-quality life that is full of more love than the entire world could hold. If I had to guess, I would say that any other person who has been blessed to love our little ones would say the same. 

From the REACH Family Institute, comes this note as posted on their Facebook page about this very topic. This reestablishes my love for this institute and their plight to give hope to those deemed hopeless:

On the Dignity and Worth of Human Life
By Charles R. Solis, Jr.
The REACH Family Institute
P.O. Box 4396
Medford, OR 97501 USA
©Charles R. Solis, Jr. 1999

World Congress of Families II
Geneva, Switzerland
14-17 November 1999

Often, speeches about the dignity and worth of human life are given from the perspective of the philosopher or the theologian. I wish that I could speak to you in philosophical or theological terms but I am afraid that it is beyond the scope of my abilities to do so. Instead, I come to you today to speak, if you will, from the trenches of my everyday experience.

For the past 24 years, my wife Conceição and I have had the extraordinary privilege of participating in, and bearing witness to, the most beautiful love story in all of creation - that of the love between parents and child. The story that we have watched over and over again is particularly poignant because it involves families struggling to cope with the often devastating reality of a child who is less than that "normal" child that every parent dreams about throughout the nine months of pregnancy. I refer to the brain-injured child, the child with learning difficulties, the child with Down syndrome, the child with Autism - those children who Christ called "the least of my brothers". This story is even more poignant still because it involves not only families who have the education to understand their child's problems and the financial resources to secure help, but also and more importantly, many hundreds of families who are uneducated and in many cases very poor. Thus making their children the "least of the least of my brothers", because if there is anything worse than being born brain-injured, it is to be born both brain-injured and poor.

What makes the story so extraordinary is that it illustrates, as perhaps nothing else can, the central role that love plays in the blossoming of a flower that would otherwise remain a closed bud and in the healing of wounds that would otherwise remain open festering sores. And of course, the story speaks directly to the dignity and worth of all human life.

The world in which we work and in which our families live is alien territory to most people. Until you have actually experienced what it is like to care for and raise a child with disabilities, whether they be physical, mental, social, or a combination thereof, and whether they be profound or mild, it is difficult, if not impossible, to understand what this world is like. It is a world that no parent expects and for which it is almost impossible to prepare.

In his splendid book The Power of the Powerless , a veritable love story about his profoundly brain-injured brother Oliver, author Christopher de Vinck includes an article written by his mother in which she tries to describe the experience of discovering for the first time the condition of her baby:

"It's hard to express what such a verdict means to a mother. It pierced me to my depth, ripped apart the very fabric of life when we discovered how severely different Oliver was going to be all his life. It was not something one could put aside or escape. The world darkened: It was as if the whole of reality had been covered with a gray film. I didn't understand yet."

This is a world that is often filled with fear and devoid of hope. It is a world in which the days are spent cleaning up vomit, reacting to convulsions, administering medication, relaxing rigid muscles, calming temper tantrums, repeatedly teaching the same simple skills; and the nights are spent quieting edgy nerves and praying for a few hours of sleep or, at the very least, a few hours of rest. It is a world into which few people venture willingly.

It may seem reasonable to someone who has never felt the "power of the powerless" to conclude that children who are brain-injured or retarded are nothing more than burdens on our society and that they should therefore be eliminated for the good of all concerned. Indeed, because of the undeniable suffering that is sometimes involved, many see this as the compassionate thing to do. And, if compassion doesn't enter into it, at the very least it is the logical thing to do. In a world of finite resources it simply doesn't make good economic sense to spend money on someone who can not give something back in return. As we near the end of the millennium, in an age when materialism and utilitarianism rule the day, this mentality takes on the form of prenatal screening, abortion, infanticide, and euthanasia, as ways of saving money, ending the suffering, and avoiding the life that is not worth living. The death toll, my friends, is frighteningly high.

The tragedy of this mentality is that each of these children is born to carry out a life's purpose, however obscure that purpose may seem to the family in the early days of the child's life. Each is such an unbelievably precious gift and therein lies the extraordinary mystery.

In his book on euthanasia Denial of the Soul, psychiatrist M. Scott Peck discusses what he calls his "God theory" that behind the scenes God is, in some hidden and mysterious way, intimately involved in our creation. Peck says that there are three implications to this "God theory". First, that we are more than our genes, our childhood, our culture, more even than our self. That at the core of our being we have a soul. Second, that we are not mere accidents, rather we have been designed. Third, that we have been designed for a purpose. It is, perhaps, a purpose yet unknown, yet undiscovered, but a purpose nonetheless.

His Holiness Pope John Paul II says, in the introduction to his landmark encyclical Evangelium Vitae,

"Man is called to a fullness of life which far exceeds the dimensions of his earthly existence, because it consists in sharing the very life of God. The loftiness of this supernatural vocation reveals the greatness and the inestimable value of human life even in its temporal phase."

So each of these children, regardless of whether or not they have the ability to function, has inherent dignity and worth because each has a purpose and is a part of the mystery of God's creation.

Of course, this is not always easy to recognize when one is plunged into despair at the news that the child of your dreams is, in fact, the child of your nightmares. Sometimes it takes many months, even years. For some families the grief is insurmountable and the truth is never revealed. But the miracle is that with the help of understanding professionals, family, and friends, and most especially through the grace of God, many families do come to accept their child and so begins the story of the all-transforming power of love.

In keeping with my perspective from the trenches of human experience, I give you the following passage on love from neurologist and psychiatrist Viktor Frankl's profoundly moving book, Man's Search for Meaning. In describing an incident during his imprisonment in Auschwitz, Frankl says;

"A thought transfixed me: for the first time in my life I saw the truth as it is set into song by so many poets, proclaimed as the final wisdom by so many thinkers. The truth - that love is the ultimate and highest goal to which man can aspire. Then I grasped the meaning of the greatest secret that human poetry and human thought and belief have to impart: The salvation of man is through love and in love."

As I have said, it is not always easy for a family to open themselves to the grace of God and to accept the challenge presented by their imperfect little child. But when it happens, the child and the family is never the same again.

I would like nothing better than to spend an hour or so telling you of the extraordinary changes that we see in the children with whom we work and the technical details of how those changes are possible. Many times during my career, I have helped create vision in children who were cortically blind, hearing in children who were cortically deaf. I have helped children who could not move, eventually learn to walk. I have helped children of low intelligence, children who were called retarded, become children of above average intelligence. I have done all of this and much more. However, this is not the purpose of my time with you today. Suffice it to say that I have been able to help my children in sometimes amazing ways for three reasons. First, because of a profound respect for the potential of the human brain, which leads to a hope for the future that is grounded in reality. Second, because of a deep understanding of the laws of nature which govern the function and development of the human brain. When properly understood those laws lead the way to the transformation in the child's ability to function. And third, but perhaps most importantly, because of an unshakable faith in the anthropological reality of the family bond - the love between parents and child.

In our work with children and their families, we play a dual role as evaluators of the child and teachers of the family. Rather than being the child's therapist we are guides on the path of development. The day to day work of traveling that developmental pathway is the rightful responsibility of the family. It is an error of enormous proportions to take that responsibility away from parents. The functional changes that we achieve are the direct result of the hard work, dedication, and love of parents, brothers and sisters, grandparents, aunts and uncles, cousins, and sometimes neighbors and friends. They are functional neurological changes that are the tangible fruit of love in action.

So how does this work? If there is no purpose to the life of a severely brain-injured child then his very existence, it seems to me, is a rather cruel joke. I have always thought that God had better things to do with His time than to play cruel jokes on lowly human beings. When one has had the experience, as we have, of watching countless numbers of families, one realizes that there is indeed a plan of amazing beauty and simplicity that is enacted every time a family embraces a child with unconditional love. The child grows in unimagined ways and that is a wonderful thing. However, even more than that, and in my opinion, for the purposes of my discussion with you today, more importantly, everyone who touches the child grows also and sometimes in most extraordinary ways. This sociological aspect of our work is what I want to impress upon you. While the changes that we see in the children are often quite extraordinary, the changes in the family are equally amazing. When you recognize that the family lives in a community that sees this love in action and is touched by it, you realize that the changes reach beyond the family home and spread to the neighborhood, the larger community, and sometimes to communities and people far removed.

This is a point that requires some elaboration. I return again to Viktor Frankl because his work speaks directly to what I see as the central issue. In describing the profound existential despair of life in the concentration camps Frankl says,

"What was really needed was a fundamental change in our attitude toward life. We had to learn for ourselves and, furthermore, we had to teach the despairing men, that it did not really matter what we expected from life, but rather what life expected from us. Life ultimately means taking responsibility to find the right answers to its problems and to fulfill the tasks, which it constantly sets for each individual."

When confronted with the devastating news that the child of their dreams has problems it is common and indeed natural for the parents to scream why us? Why our child? What did we do to deserve this fate, this suffering? Viktor Frankl learned that, while fate and suffering may be unavoidable, "the way in which man accepts his fate and all of the suffering that it entails, the way in which he takes up his cross, gives him ample opportunity - even in the most difficult of circumstances - to add a deeper meaning to his life."

So it is with our families. They have chosen to embrace the precious gift of their child, no matter his level of ability, and they have assumed the task of playing a central role in his growth and development. In so doing, their lives become richer with meaning.

This is a constitutive characteristic of man that Frankl calls the "self transcendence of human existence." This means that part of being human is to be always pointed and directed towards something or someone other than oneself. The more one forgets himself - by giving himself to a cause to serve or another person to love - the more human he is and the more he actualizes himself.

Let me give you some true examples of how this incredible process works in the real world of parents and children.

Christopher de Vinck writes in The Power of the Powerless,

"Oliver could do absolutely nothing except breathe, sleep, eat, and yet he was responsible for action, love, courage, insight. We breathed the same night air as Oliver did, listened to the same wind, and slowly without our knowing, Oliver created a certain power round us that changed all our lives. I cannot explain Oliver's influence except to say that the powerless in our world do hold great power. The weak do confound the mighty."

Shortly before his death, Father Henri Nouwen, a Dutch priest and former pastor of the L'Arche Daybreak Community in Toronto, Canada wrote a book called Adam about his experience of living with and learning from a severely handicapped young man. Father Nouwen writes,

"Adam gave me a sense of belonging. He rooted me in my physical being, anchored me in my community, and gave me a deep experience of God's presence in our life together.
I have heard about and read about the life of Jesus, but I was never able to touch or see him. I was able to touch Adam. I saw him and touched his life. And what was said of Jesus must be said of Adam: "Everyone who touched him was healed."(Mark) Each of us who has touched Adam has been made whole somewhere; it has been our common experience."

The growth that this kind of experience creates in each parent, in every brother and sister, and in every other person who becomes involved in a child's life is, I suppose, unique to each individual. Although I have been under the spell for several decades, I still find it difficult to describe exactly what happens when one works nose to nose with a brain-injured child. It is not an earth shattering event, but rather something that happens quietly, beneath the surface of the daily activity. It is an experience that somehow makes one a bit more human and a bit more humane. I have always thought of it as food for the soul - spirit nourishing spirit.

When my daughter, Juliana, was a little girl, rather than place her in child care, we arranged for her to spend a great deal of time with us even when we were occupied working with families and their children. Juliana spent her entire childhood surrounded by children of varying levels of development - blind children, crippled children, children with low understanding, hyperactive children, children who could not speak, children who had convulsions, children who the world used to call mongoloids. She began almost every morning with the same two questions. First - who is coming today? Second - can they see and walk? She wanted to know because the answer would determine for her what kind of games she would be able to play that day. However, for little Juliana it made no real difference. To her it was quite simple - some children could see, some could not; some children could walk, some could not. She was no better or no less a person than they, simply because she could do more. I can picture her now having a delightful time, lying on the floor next to an immobile child surrounded by her dolls and toys. Many times during those years people asked what we always found to be a curious question. It was even more curious because sometimes the question came from our families who had brain-injured children. The question was, "Aren't you concerned about the effect that being around these children is going to have on Juliana?" Isn't that extraordinary? "Aren't you concerned about the effect that being around these children is going to have on Juliana?" - as though she might catch a mysterious disease or be somehow psychologically scarred for life! It is a question that always startled me, indeed troubled me. Rather than be scarred by her encounters with the children, Juliana was forever and irrevocably enriched by the experience. She learned about patience, tolerance, compassion, dedication, service, success, and failure. Most significantly, she learned about the real dignity and worth of human life and through that experience, she became a better person. Today she is a bright, compassionate young woman about to go off to university and I have no question but that the world is already a better place because she is in it. Largely, she has not her parents, but the children to thank for that.

There is one more example of this process that I would like to tell you about. It is the story of a boy named Leopoldo. I had the privilege of knowing and working with Leopoldo and he changed, in incredible ways, the lives of everyone who touched him, including my own life. Like so many others, his influence persists many years after his passing. I had the good fortune of knowing Leopoldo from the time that he was a little baby. He was a profoundly brain-injured little boy born the seventh child in a very wealthy family. As his mother so aptly describes it, his birth was a profound existential shock. She and her husband were in no way prepared for this hurt little bundle of humanity. Having had six absolutely beautiful and normal children, Leopoldo's condition - blind, deaf, unable to suck, wracked with convulsions, and totally flaccid - was completely unexpected and completely alien to their experience of children.

Placing their faith in "the goodness of God and respect for His laws of nature" Leopoldo's parents accepted their suffering with incredible courage and did their best to cope with the realities of his condition. However, despite being seen by some of the most highly regarded specialists in the world, there was no hope for Leopoldo except for an early death. Then, when things seemed to be at their darkest, they discovered our program of brain development.

As it has in so many other children, the program proved to be the key to unlocking Leopoldo's hidden potential. Over time, he learned to see, to hear and understand, to crawl, to say a few words. He became an integral part of his family and was very aware of his family's love for him and of his love for them. He became, in short, a succession of miracles. Along with the changes in Leopoldo came the simultaneous and equally important changes in his family. As his mother explains it, working with Leopoldo brought the family closer together and brought all of them closer to God. I once heard her tell a reporter that Leopoldo taught her what being human was all about. Imagine that, a completely helpless child having that kind of an impact on a grown, fully capable adult. Mother Theresa, who met him on a few occasions, was fond of calling him "The Professor of Love". I suppose there can be no greater compliment, for if there is anybody who knew about the transforming power of love it was Mother Theresa.

For 14 years, Leopoldo fought the good fight as he struggled for every inch of progress that he ever made. He did so with quiet dignity, without complaint. Then, at the age of 14, his mission here on earth completed, he returned to his Father in Heaven.

Several months after Leopoldo's death, together with his mother and father, I began a small project to provide poor children with the same program that enabled Leopoldo to make such fantastic progress and that did so much to contribute to the growth and development of his entire family. When I first started the project, I was often met with considerable skepticism. Repeatedly I was told that it would never work because the families were uneducated and had no financial resources. How could I possibly expect poor uneducated families to succeed where professionals had failed? I was told repeatedly that I was a dreamer. I only smiled because I knew something that nobody else knew. I knew about the power of love. Love knows no university and it knows no social class. Leopoldo, and all of the other children with whom I worked, had taught me that love and dedication do indeed conquer all. In the presence of love and dedication, education and money are of little consequence. Today, 11 years later, that small project is a full fledged program of professional training and services for families that is reaching many hundreds of poor children throughout the country of Venezuela. It is named in honor of Leopoldo. More than 175 professionals (doctors, therapists, teachers and psychologists) have been trained in our methods and many of them are actively working in 23 centers and schools where they teach poor families about the miracle of brain development and the power of love. In June of 1997 at the Vatican, His Holiness Pope John Paul II, speaking to a delegation of participants in a symposium on brain-injured children, recognized Programa Leopoldo as an extension of the Gospel of Life. There is indeed a power in the powerless.

I believe that the Leopoldo's, Oliver's, and Adam's of the world are, in fact, our most precious natural resource. This is not because of what they can do because obviously so many of them can do nothing in a functional sense. Rather, it is because of what they do to us. When one sees the amazing impact that children like Leopoldo and Oliver and Adam have on the lives of everyone around them; when one sees that this impact continues long after they have left their earthly existence; there is little else that needs to be said about their dignity and worth. The children and their families speak eloquently from the trenches of their everyday experience.

All treatment plans aside... since many are unbelievably costly creating a huge sense of helplessness as a mommy to a little one who could greatly benefit from them, the everlasting power of unconditional love, conquers all! I will always strive to do everything I can to help my 'lil man, my best friend... and he forever has my heart, wherever he takes it!

Monday, April 23, 2012

Bee-ography Monday

Sadly, I don't have any new bee-ographies to share this week. However, in case you've missed any of our previous editions, they're all listed here (just click the name to go to the post):

Nevaeh: grandparents edition
Malcolm: grandparents edition
Haydin: grandparents edition
Brayden: grandparents edition
Burkleigh: grandparents edition
Chrissy: adoption edition
Tariku: adoption edition

We have a couple of themed months coming up in May & June with Mothers and Fathers Day. For Mothers Day, the entire month of May will be dedicated to our bee-mommies... featuring bee-ographies about the mommies of little ones with hydranencephaly, a glimpse in to how this journey has shaped them. The same thing in tribute to daddies during the month of June. 

We are always accepting new bee-ography submissions. Not sure where to begin? Below is a template you can simply copy & paste in to a word document or email to help guide you along the way:

Bee-Ography Submission
1)      Describe your pregnancy?  Was child diagnosed in utero? Any complications with pregnancy?  Any suspensions from doctors as to what may have caused the diagnosis?  What information did you get from doctor?
2)      What type of support did you get from doctors, family, friends, social  workers, etc….
3)      After you child was born, what type of surgeries and medical interventions were needed and at what age did the surgeries occur?
4)      What impact has your child had on your life?
5)      What type of information do you wish you would’ve had after diagnosis?
6)      What activities does your child enjoy?  Do they like certain toys, eating certain foods, comfort are they comforted with certain people.
7)      Any other pertinent information you would like to include?  Include as many pictures as you would like.  

We look forward to sharing your story. Upon completion, email to 

Sunday, April 22, 2012


If you haven't checked our merchandise page out yet, we have some pretty great options for you to help raise awareness of hydranencephaly and support the growth of Global Hydranencephaly Foundation.

Our newest additions are our t-shirts, available in two styles and a wide variety of sizes (note that the black box will not be visible on your t-shirt purchase):



Available in sizes youth extra small to 4XL & $20 a piece, shipping included with an additional $5 shipping for international orders. Visit our merchandise page to sign up for purchase via CustomInk's order sheet.

And choose from a variety of other awareness merchandise to include toddler "Bee-lieve" tees in sizes 2T, 3T, and 4T; vinyl awareness clings featuring our logo; ceramic mugs which are in high demand; silicone awareness bracelets with "believe in the impossible" and our web site inscribed; as well as our new, roomy tote bags:

modeled by Brayden's sisters, Adysson & Isabella

If it's something sparkly you're looking for, visit Sonyarita Designs on Facebook to order customizable awareness jewelry with 50% of your purchase being donated to Global Hydranencephaly Foundation.

These are only a few of the many handcrafted designs available by visiting her Hydranencephaly Awareness Album on Facebook.

Saturday, April 21, 2012

Bee-Worthy Share: The Gratitude Movement

In wrapping up National Volunteer Appreciation Week, which was mentioned in Thursday's post, I felt that a heavy dose of reminders to be grateful in every aspect of our lives would be appropriate. 

"Real life isn't always going to be perfect or go our way, but the recurring acknowledgement of what is working in our lives can help us not only to survive but surmount our difficulties."

--Sara Ban Breathnach

This is something that I struggle with constantly, as do many other parents of children with medically complex conditions... being grateful for the things that are going right, and looking at the things that are seemingly wrong as being right at the same time. (got that?) Personally, I instead find myself dwelling on all the reasons why things are not as perfect as I anticipated...

...that is, until I realize that everything is perfectly perfect... 

even if completely imperfect to most. (if you weren't already having to re-read amongst the confusion) 

You are lying if you say that you are exactly where you expected to be prior to being where you are. Aside from that simple point, who asks to be a parent of a child who is born with a condition deemed completely incompatible with life... one that is given an expiration date. 


speaking for myself, I am happier than I have ever been in my entire life. I have the eyes to recognize what's important, the patience to sustain through the uncontrollable, the strength to fight for what I believe in, and most importantly, the ability to rid my life of those constant negativities which plague my days and bring me down. I know, which is what makes this topic of most importance, that negativities have no place in a happy life... and we don't have time in this life to waste being unhappy! That's right, I realize that I control my days... even if they're completely out of control! (and I assure you that they stay the latter!)

Something, or someone, I wanted to share: the author of the above quote, that began this rambling, is Sarah Ban Breathnach whom is noted as being the founder of the Gratitude Movement. 

The GRATITUDE MOVEMENT?? Immediately, I'm intrigued... with a little more gratitude, this world would be amazing! Here is a little blip about her, in all her amazing glory:

"Sarah Ban Breathnach, author of the #1 New York Times best selling book, Simple Abundance is recognized as the founder of the Gratitude movement and was named “One of America’s Most Fascinating Women of Power and Influence” by George Magazine in 1998. Sarah’s work celebrates quiet joys, simple pleasures and everyday epiphanies which speak to women around the world. Sarah’s contributions have been recognized around the world and her book has been translated into 27 languages. Sarah founded the Simple Abundance Charitable Fund and is the publisher of Simple Abundance Online, a membership community of kindred spirits who recognize the universal truth that all we have is all we need."

Surprisingly enough, I'm hooked... and in case you want to be too, then click HERE for the link to her web site. In the meantime, here's a letter from her to explain the purpose of her site a bit more clearer:

Dearest Friends,

Welcome to Simple Abundance Online… For many women today, daily life has become a constant tug-of-war between duty and desire. Which comes first—fulfilling the expectations of others or honoring your own authentic needs and wants?

At the heart of Simple Abundance is the belief that true contentment lies not at some distant horizon, attainable only by immense sacrifice, but is found all around us. It exists in the creative choices we make each day and the awareness and appreciation of simple pleasures, bountiful blessings, and everyday epiphanies.

This life-changing discovery comes not from learning a formula or repeating a mantra but from opening the soul, by finding the quiet places in our daily routines—moments of repose when the Authentic Self can reawaken and peek out from the complicated web of life’s frustrations. Only then can we see what surrounds us with a new set of eyes, clear and keenly aware of the comfort that would otherwise go unnoticed.

Each month in Simple Abundance Online you’ll discover a woman’s tapestry of contentment. Home comforts. Earthly delights. Vintage Bliss. Seasonal pastimes. Joyful Simplicities. Saving graces to restore a woman’s harried heart and soothe her frazzled mind.

Simple Abundance is an invitation, a gentle wake-up call, to embrace the life you have with an entirely fresh outlook. I hope you join us.

Sending you blessings and much love,

Sarah Ban Breathnach

Now for just a few things that I am eternally grateful for, that many would not even recognize as being a topic of gratefulness... I am blessed by a little man, and the many people he has brought in to my life, who have helped me see through clearer eyes.

I am grateful for:

~ being capable of reading eyes
~ amazingly understanding daughters who selflessly adjust their days to compensate for events that may get in the way
~ mornings, whether they're cloudy or gray, sunshiny and blue, or dark and dismal... mornings are amazing,  my favorite part of the day as it is a new beginning
~ an overabundance of miraculous, supportive strangers who I can call friends, and even family in some cases
~ an understanding, the ability to just "get it"
~ a more tuned in sense of the world
~ appreciation of the tiniest of moments, and the recognition that that moment will never happen the same again
~ inspiring words that help me through my days
~ love... especially from my amazing best friend, who just so happens to also be my husband
~ enlightenment, that I am forever open to every possibility
~ implanted belief in miracles
~ undying hope
~ having a list this large, which could truly go on forever...

...really, the list is endless in my world. Something as huge as having clean, fresh air to breathe to having food to eat in my pantry... I am grateful for it all. 

And, I am grateful for you all... for reading and following along with my sometimes nonsensical ramblings, which appear amongst those beyond understanding due to the technicality of them all... and I would be even moreso grateful for you all if you would share our foundation blog with 5 other people. Here is the direct link to copy and paste:

What is the most mundane thing you are most grateful for? Share here in the comments section or come on over to our Facebook page and join in the discussion! 

Friday, April 20, 2012

Flashback Friday: Spring Program

This song just came on my ipod while on shuffle & I instantly flashed back to this day. Originally from my first blog, "Small Portion of a Life's Journey." If you have videos of your own little one with hydranencephaly that you would like to share on our foundation's YouTube channel at:

Yesterday was my son's spring program at school. He entered the preschool program early from our local early intervention program, that he would be graduating from in June anyways, on February 15th. It was such a hard decision to make, but after meeting the teachers and the staff I felt peace with that decision. Now that he has been there for a couple of months, I KNOW it was the best decision for him. He thrives in the classroom... classes are only allowed to hold 8 children. Many have limited abilities in the school. The teachers are all so involved and energetic, the staff is the same. He lights up the second we walk in to the school... he can't speak, but he beams enthusiasm and tries so hard when he's there. His new friends include him in everything, his teacher Mrs. Julie keeps him by her side... he is loved.

Yesterday was also an unbelievably emotional day for this momma. All I kept thinking about were the days during my pregnancy that I dreaded at the drs office, with them telling me over and over that he wouldn't survive until birth because his hydrocephalus was so severe that it had put him at risk for brain damage. Once he survived the birth, he was given his hydranencephaly diagnosis and we were told he wouldn't be going home with us until he lived days in the hospital and actually thrived while I recovered from my own complications. Upon discharge, we were offered the option of signing him over to the state to be cared for in his last days, he went home with his parents (we wouldn't have had it any other way) to be loved and was given hospice care. We prepared ourselves and my girls for him to die within days, every day was so scary. Every new sound was possibly his last. Every time he slept we worried he wouldn't awake. Instead, those grim days of preparing for the worst turned in to optimism and hope as he grew stronger, smarter, and much more full of invigorating life. We stopped preparing for the bad and started planning for his future with us. Yesterday I prepared myself to see him on stage with his friends, literally lighting it up during their song.

They painted an American Flag and attached lights from the flag to Brayden's switch for him to activate during the song... he knew his job, and was very serious doing it! I wish the video was better, but it brings me to tears every time I watch it... (be sure to click stop on the music player at the bottom of our blog):

Wednesday, April 18, 2012

Thankful Thursday: Volunteer Appreciation Week

Logo courtesy of Hands On Network

That's right... THIS is National Volunteer Week & we have so much thanks to give to the many, many people that have helped us over the past 9 months to grow and reach more families across the globe.

"Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has." 
~Margaret Mead 

This foundation started as a passing thought, one fueled by my own journey with Brayden and the outpouring of support and guidance I found from people that began as strangers and now are family; but with many hours of committed work by some pretty amazing people... it has proven to be far more successful in its short existence, than any of us had ever imagined. 

So many people have supported our mission and helped us to grow, others have donated their personal time and talents by being active on our organized committees... but first, I have to thank the ladies who have stuck through everything as current members of the board of directors:

~Heather Gibson
~Angela Mason
~Holly Mansfield

I know that things have been more than challenging & we have struggled through the pains of learning as we go... but you all do so much to help make things work for the foundation, not to mention as hydran-mommies yourselves. I am so eager to see where we go in the months to come, thank you for your continued commitment and your many hours of work to get things running as smoothly as possible.

"Volunteers are the only human beings on the face of the earth who reflect this nation's compassion, unselfish caring, patience, and just plain loving one another."
  ~Erma Bombeck

And our committee volunteers have worked tirelessly as well... researching, writing, coding web sites, maintaining databases, creating merchandising options, balancing numbers, learning all things non-profit, etc... all while offering support and guidance to families across the globe through our various social and print media platforms. 

"How wonderful it is that nobody need wait a single moment before starting to improve the world."
  ~Anne Frank

Thank YOU:
~Sarah Garcia
~Jessica Zuchowski
~Donna Kalmon
~Heidi Thompson
~Jennifer Bauer
~Devoney Wolfe
~Dru Springer

By no means is this an all-inclusive list of the many hands who have helped us on this journey, it would be impossible to list every name that has inspired, motivated, guided, and held us up when times have been tough. Please know, every effort you make has changed a life... no matter how big, or how small.

 "How far that little candle throws his beams! So shines a good deed in a weary world"
 ~David Seltzer

We also cannot forget to thank those who have donated product and/or services to our cause, especially our friend Sonya Peterson at SonyaRita Designs who donates 50% of all sales on personalized awareness jewelry to GHF. As well as those independent sales consultants who have had fundraisers in support of GHF as well...

"Act as if what you do makes a difference.  It does."
  ~William James

And we are by no means done... so much more room to grow and talent to be used. If you are interested in donating either time or talent to helping our foundation reach its mission,  email me at for more information.

MISSION: Through the Global Hydranencephaly Foundation, a greater passion will be shared as families are networked across the globe to ensure every child given this diagnosis has the opportunity to live and thrive in the quality of life they deserve. Families will be offered support, information, guidance, and resources. Through education and awareness campaigns, the medical community will become enlightened to the possibilities that exist for these children and the world will learn to accept this condition as simply an obstacle in the lives of these little miracles.

"Unless someone like you cares a whole awful lot, nothing is going to get better.  It's not."
  ~Dr. Seuss

Image courtesy of And Everything Nice...