QUOTES THAT HAVE CARRIED ME THROUGH

Meaningful Quotations
“This book is dedicated to the health care organizations that not only raise money for research to seek cures for neeruomuscular diseases but also train and encourage health care professionals to provide the high-quality care necessary to prevent mortality while cures are being sought.” – Dr. John Bach (From the dedication in Dr. John Bach’s book Management of Patients with Neruomuscular Disease)
“Don’t ever forget that each person is a world unto himself and that we can only understand that part of the character of each individual that is in ourselves. The rest will always remain incomprehensible for us. If you want to establish new laws, they can only be valid for that part of others that we understand in ourselves.” – Gustav Mahler (Quality of life section in Dr. Bach’s book Management of Patients with Nuromuscular Disease)
“Non intervention in fatal illness becomes a self fulfilling prophecy.” – Dr. John Bach
“The phrase is apt to cause disquiet. There have been those among us who have arrogantly judged, from a vantage point of power, the value of a human life. They have made decisions based on their assessment of a person’s quality of life about providing supports to sustain that life. This attitude peaked in Nazi Germany, where such decisions were used as the basis for genocide. We like to think that we have moved well beyond this perspective, but important decisions about people’s lives are still being made from positions of power. Such practice is difficult to combat, especially in a period when responsibility of government in the area of human and environmental services is being cut back.”- Introduction by J. David Baker (Quality of Life in Health Promotion and Rehabilitation)
“There are 3 kinds of lies: Lies, Damn Lies and Statistics” ~ Mark Twain (Borrowed from Benjamin Disraeli)
“The creative spirit is not indestructible, but a courageous few discover that when in hell, they are granted a glimpse of heaven.”-Anthony Storr
“The opposite of Compassion is Indifference.” – Jean S. Bolen MD
“It is not enough to be compassionate. You must act…………….When there is something that needs to be done in the world to rectify wrongs with the motivation of compassion, if one is really concerned with benefitting others, it is not enough simply to be compassionate. There is no direct benefit in that. With compassion, one needs to be engaged, involved.” – The Fourteenth Dalai Lama
“A patient is then weighed down by the same burdens as a rape victim becoming a carrier of the projections of others who ascribe reasons why this illness happened to this person. Blame – the – victim “reasons” are punitive. They are very different from objective causes-and-effect reasons, the seeking of which can lead to solutions, cures, and preventative treatment for medical and social problems. When people are afraid that what has happened to someone else could happen to them they often distance themselves from the victim. If they can blame the victim they feel safer or superior, which is the unconscious motivation. Blame is also a way of shifting guilt onto someone else.” – Jean S. Bolen MD
“He who preserves one soul is considered as if he had preserved a whole world.” (Talmud, Sanhedrin, 37A)
“When the first Superman movie came out, I gave dozens of interviews to promote it. The most frequently asked question was: “What is a hero?” I remember how easily I’d talk about it, the glib response I repeated so many times. My answer was that a hero is someone who commits a courageous action without considering the consequences. A soldier who crawls out of a foxhole to drag an injured buddy back to safety, the prisoners of war who never stop trying to escape even though they know they may be executed if they’re caught. And I also meant individuals who are slightly larger than life: Houdini and Lindbergh of course, John Wayne and JFK, and even sports figures who have taken on mythical proportions, such as Babe Ruth or Joe DiMaggio. Now my definition is completely different. I think a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. The fifteen-year-old boy down the hall at Kessler who had lannded on his head while wrestling with his brother, leaving him paralyzed and barely able to swallow or speak. Travis Roy, paralyzed in the first eleven seconds of a hockey game in his freshman year at college. Henry Steifel, paralyzed from the chest down in a car accident at seventeen, completing his education and working on wall street at age thirty two, but having missed so much of what life has to offer. These are real heroes, and so are the families and friends who have stood by them.” -Christopher Reeve from his book “Still Me.”
“When Danna said, “Your still you, and I love you,” it meant more to me than just a personal decleration of faith and commitment. In a sense it was an affirmation that marriage and family stood at the centre of everything, and if both were intact, so was your universe.” -Christopher Reeve from his book “Still Me”
“To serve, to strive and not to yield.” – Outward Bound
“Happiness exists in action, it exists in telling the truth and saying what your truth is, and it exists in giving away what you want most” – Eve Ensler
“If you see an injustice being committed, you aren’t an observer, you are a participant.” – June Collwood
“”Why answer a question with another question? Just do the experiment.”-Colonel Holcomb MD
“Silence encourages the tormentor, never the tormented.” - Elie Weisel.
“Make no mistake; physical punishment may very well communicate “stop this immediately” but it also communicates “I am bigger and stronger than you, which means I have power over you and can hurt you if you do not do or act as I say.” We have policies in place that most people support to guard against bullying in school, in the workplace (because adults don’t like being hit, yelled at, or belittled, either), and we have laws that protect us from assault and violence. These laws are accepted as warranted and useful. We also have laws in place to guard animals from abusive behaviour.It is only fitting then that we provide our children the same rights and pay them the same respect we do the household dog and cat.” – Melanie Barwick, PhD., C.Psych
“We make a living by what we get, but we make a life by what we give.”-Winston Churchill
“Among people who believe that there is only one truth-and they are in possession of it-tolerating other points of view is, by definition, impossible.” – Hella Winston
“Those of us who deal in science, even the most enlightened of us, have a strong and objectionable tendency to hubris. Hubris for scientists comes from an inadequate knowledge and appreciation of the past. Discoveries are thus made and claimed that are really rediscovered – not new advances at all, but history lessons. I have to concede priority to people who came before me. Rediscovery is every bit as good as discovery, If what is rediscovered is important and was forgotten. It is better still when the rediscovered information has the capacity to improve the lives of those around us.”-From the book THE SECOND BRAIN by Michael D. Gershon, M.D.
“Throughout human history, as our species has faced the frightening, terrorizing fact that we do not know who we are, or where we are going in this ocean of chaos, it has been the authorities, the political, the religious, the educational authorities who attempted to comfort us by giving us order, rules, regulations, informing, forming in our minds their view of reality. To think for yourself you must question authority and learn how to put yourself in a state of vulnerable, open-mindedness; chaotic, confused, vulnerability to inform yourself. Think for yourself. Question authority.” -Timothy Leary
We need medicine with a heart….The endless physical, emotional, and financial burdens that your family carries when a child is dying…make you totally incapable of dealing with incompetence and insensitiviy. – Salvador Avila, parent.
“A simple child, that lightly draws its breath, And feels its life in every limb, What should it know of death?” – William Wordsworth, 1798
“Palliative care works with – not instead of – other treatments. It can start as soon as the family knows the child is ill. Palliative care does not mean “giving up.” Good palliative care can help all seriously ill or injured children, not only those who are dying.” - When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families
“When the unthinkable happens the lighthouse is hope. ONce we find it, we must cling to it with absolute determination, much as our crew did when we saw the light of Gibb’s Hill that October afternoon. Hope must be as real, and built on the same solid foundation, as a lighthouse; in that way it is different from optimism or wishful thinking. When we have hope, we discover powers within ourselves we may have never known—- the power to make sacrifices, to endure, to heal, everything is possible. We are all on this sea together. But the lighthouse is always there, ready to show us the way home.” ~ Christopher Reeve
“What, then, constitutes medical humanism? I would suggest four core values: First is the preciousness (or sanctity) of each human life. The second value is respect for human dignity. The third core value of humanism is the celebration of human diversity. Finally, the fourth core value of medical humanism is a sympathetic appreciation of the complexity of the human condition- how difficult it is for anyone to meet all of society’s idealized expectations regarding individual and interpersonal behaviors, and how history and circumstances have conspired to make it especially difficult for some.”~ The physician-scientist, the state, and the oath: Thoughts for our times Barry S. Coller

SHIRA STRETCHING

Every day Shira has physio therapy performed on her. Stretching and movement on vibrating mats is done for about an hour and a half daily followed by standing in the afternoon. Here is a photo of Shira doing a supported bridge pose. We started slowly and have been doing this for some time so if you are going to try it with your child start with less of an angle. Remember to support the whole body don't let anything dangle. There are pillows and blankets underneath Shira supporting her neck, legs, shoulders and arms. Shira is on her respirator also. If your child is prone to reflux you can still do this with a wedge underneath so the head is above the buttocks.

A GIRL OUR DAUGHTER

“A girl, our daughter. She is a being more rare, more beautiful, purer, more perfect and more delicate than the wildest dream of a poet. We could never believe her to be our own flesh and blood. Her beauty is a well-spring of purest water-of-life, and to look upon her is to drink and drink and drink again……. She is rare, a perfect creation, a work of purest art. A delicate flower that blooms in the liquid light of the moon. A nature not of this world, a personality like that of some biblical maiden, gracious and queenly. We find it difficult to believe her our own……..” -Excerpt from the book The Invisible Man by Ralph Ellison changed to present tense by moi.

WHAT IT MEANS TO BE A HERO

This is a re-post but it's exactly how I Feel At The Moment May 07, 2009
Lately i’ve been thinking a lot about what it means to be a hero.
http://www.wikipedia.com/ Definition: hero (male) and heroine (female) came to refer to characters (fictional or historical) that, in the face of danger and adversity or from a position of weakness, display courage and the will for self sacrifice – that is, he-roism – for some greater good, originally of martial courage or excellence but extended to more general moral excellence.
People have told me that my wife and I are heroes for the way we take care of disabled daughter Shira and our regular son Sammy. I don’t feel like a hero I just feel like a father that doesn’t want to loose his child to a horrible terminal disease. Some people believe a hero is someone that has overcome great odds and persevered against great odds. Does this mean the people that survived the Titanic are heroes while those that died are not? Are the survivors of the Holocaust heroes while those that died at the hands of Nazi Germany not heroes? Not long ago I watched a show about American War Heroes. The subject of the show was to figure out what separated these heroes from the regular population of people. None of the heroes interviewed felt like heroes and none of them could explain why they put themselves in mortal danger sacrificing themselves for the good of others. A wave of selflessness took these heroes over making them act putting their comrades lives ahead of their own.
Since our daughter’s diagnosis (with Spinal Muscular Atrophy Type 1) I have met hundreds of families that “go beyond the call of duty” to care for their children. Is there a limit as to how much effort, time, money etc. they should put into their children? Is there a limit as to how far one should go to insure the safety of another human being? The great child advocate June Collwood said, “If you see an injustice being committed, you aren’t an observer, you are a participant.” Are the men and woman that save people during times of genocide like the holocaust in the second world war, Ruwanda, Serbia Croatia War, or the current African conflicts heroes? Shouldn’t saving people from harm be the norm not the exception?
A few years ago when a bridge collapsed in Minneapolis we saw acts of heroism by passersby saving people trapped underwater in cars, on the bridge, near the bridge etc. I started to wonder if these heroes were also heroes in their daily lives or were their actions to act and climb down a collapsed unstable bridge just a primal reaction of the moment?
It’s my opinion that there are different levels of acting in heroic ways and that heroism is in fact subjective. Those that act heroically only to gain fame or monetary reward is the lowest level of heroism; their actions are still heroic but the actions are offset by their own personal needs.
For me the true heroes are: the woman living down the street that has cared for her disabled daughter for 46 years, the parents who care for children with life threatening illness at home and spend all their time insuring their regular children live full lives, or as Christopher Reeves put it, “”When the first Superman movie came out, I gave dozens of interviews to promote it. The most frequently asked question was: “What is a hero?” I remember how easily I’d talk about it, the glib response I repeated so many times. My answer was that a hero is someone who commits a courageous action without considering the consequences. A soldier who crawls out of a foxhole to drag an injured buddy back to safety, the prisoners of war who never stop trying to escape even though they know they may be executed if they’re caught. And I also meant individuals who are slightly larger than life: Houdini and Lindbergh of course, John Wayne and JFK, and even sports figures who have taken on mythical proportions, such as Babe Ruth or Joe DiMaggio. Now my definition is completely different. I think a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. The fifteen-year-old boy down the hall at Kessler who had lannded on his head while wrestling with his brother, leaving him paralyzed and barely able to swallow or speak. Travis Roy, paralyzed in the first eleven seconds of a hockey game in his freshman year at college. Henry Steifel, paralyzed from the chest down in a car accident at seventeen, completing his education and working on wall street at age thirty two, but having missed so much of what life has to offer. These are real heroes, and so are the families and friends who have stood by them.”
For me heroes are: those that have a choice to act or not act selflessly and choose to act in such a way as to give of themselves to a greater good other than themselves, and those that over come great personal obstacles becoming examples to others. A greater good can be something as small as giving up a vacation so that your kids can go to camp or crossing the street just to help someone needing help .
Two weeks ago Help Fill A Dream was at our home erecting a playground in our back yard that was donated to our daughter so that she could play with other children and her brother. The men that showed up on their own time, on a Saturday to spend 7 hours working just so our daughter, whom they had never met, could have more happiness in her life. These men are HEROES!!
Everyone really does have the potential and capacity to be a hero because heroism is not measured by the type of action but by acting solely for the better good of someone else beyond ones self!
The other day I ran across a quote by Ghandi that really described how each of us could live a selfless heroic life.
“I will give you a talisman. Whenever you are in doubt, or when the self becomes too much with you, apply the following test. Recall the face of the poorest and the weakest man [woman] whom you may have seen, and ask yourself, if the step you contemplate is going to be of any use to him [her]. Will he [she] gain anything by it? Will it restore him [her] to a control over his [her] own life and destiny? In other words, will it lead to swaraj [freedom] for the hungry and spiritually starving millions? Then you will find your doubts and your self melt away.” – Ghandi

Happy Holidays And New Year To Our Family and Friends

Fun with the family. Today was Shira's last day of school and she wanted to dress up like a princess. She told me to put on a suit which did and it fit! We lost our EA and have a new one starting on Jan 7, 2013. Change is so much tougher to deal with when your child has a severe illness. I think Shira handles change much easier than I do. Here's a photo of Shira with her old EA whose last day was today

Shira Ice Skating

Here is a link to Shira Ice skating https://www.youtube.com/watch?v=B6oobWKAJr4&list=UUXRTTsTCf3b1_7Y6w7-Qskg&index=1&feature=plcp

Spinal Muscular Atrophy Type 1

Looking after a child with SMA Type 1 is intense. I would describe my experience delivering multi disciplinary intensive care 24/7 something like this. Imagine you are part of an expedition climbing Everest. As you are climbing you are relying on all of your gear and experience to keep you alive (in this case our child alive). One day a huge storm rolls in and half of your expedition is killed during the storm. It's to close to the top of the mountain so you decide to pray for the dead and push on to the summit. It's all about "looking past yourself" and delivering the care your child needs or they will die, simple as that. This is life with SMA.

The AA Diet, Low Fiber and Fecal Compaction

The AA Diet, Low Fiber and Fecal Compaction I would just like to start off by saying that I believe that most of you SMA Type 1 parents will be able to take their children off of Mirilax and other stool softeners by adding fiber and more hydration to your child's diet. There are always contradictions but I have calculated a lot of diets and the one thing missing from the AA Diet is an abundant fiber source. After 61/2 years of using Mirilax and Pedialax Shira is now having consistent bowel movements on her own. Please read about our experience below and try adding fiber to your child's diet I think you will be amazed! Also remember to make sure your child is calculated optimally and properly hydrated before adding fiber to your child's diet. Consult your physician or dietician first;) Hi everyone we are back from our trip to Disney. In all we drove over 4000 km this trip and it was not without some health glitches I would like to discuss. As many of you know I calculate a lot of diets for people. Well I’m sorry to say that I was negligent when it came to Shira’s diet and it only drove home the importance of following my own theory of 1) calculate optimally and 2) re calculate often. I had measured and weighed Shira about a month before leaving but never got on it. I just figured I’d up her water in her diet to deal with the low humidity and heat in California. Unfortunately Shira developed a severe case of constipation! It was so bad she didn’t pass a bowel movement for almost 2 weeks. A grapefruit size ball was sitting in her stomach and at her worse she refluxed. HOW I DEALT WITH SEVERE CONSTIPATION The first thing I did was re calculate Shira’s diet. This is embarrassing for me but I’m sharing it to show the importance of re calculating diet often especially when our children have growth spurts. Shira was about 425 mls of fluid under where she should be. The first thing I did was added 425 mls more water to her diet. This still did not allow Shira to pass a bowel movement. After about 3 days I was giving Shira enemas using a 60 ml syringe in the bathtub of the hotel. I was doing this 2 or 3 times a day with no luck! I was getting worried to say the least. Luckily we had a few contacts down south and we ended up at Kennedy Swann’s doctors Dr. Cramer. We started Shira on the same drug they use for men needing a colonoscopy and we thought this would clear Shira out. Of course I’m very concerned about adding so much more liquid into Shira’s diet with such a constipated stomach. Our kids are stomach breathers and we try and avoid doing anything that will hamper their ability to breath easily. Anyways after giving Shira the oral medicine every 4 hours we also tried dealing with the constipation using a suppository (dukolax) from the other end. Shira started passing a little stool but not enough! We took Shira to the ER at Choc and had her x rayed and boy was she constipated. The ER doctor at CHOC was very thorough also and was interested in Shira’s diet believe it or not. He advised I give Shira something easier on her stomach like milk of magnesia but also increase Shira’s water (which I had already done) and add fiber to her diet. Maxine went to the healthfood store and purchased some TripleFiber by renew life and we added a dose to her daily dose of food. At this point I was still giving Shira 3 enemas a day with no results. Shira had refluxed and I had started her on antibiotics I brought because she also had a fever. I’m freaking out at this point also because of insurance reasons. I just wanted to get home in case we needed to be hospitalized. So now we had increased Shira’s daily water intake, added fiber to her food and I started giving her Senna leaf to make her have a bowel movement and I was still giving her half a dose of Dukolax every day. I was going through whole boxes of pedialax and giving shira an enema and nothing was working. Finally by the time we hit Portland about 8 days after Shira’s constipation started she had a bowel movement. I kept up with the pedialax, dukolax and Triple Fiber and by the time we got home Shira was having some strong consistent bowel movements. I also started to notice that Shira was now having a regular bowel movement in the morning without the use of Mirilax or pedialax! It’s now been 5 days since we have used any drug and the only thing different in Shira’s diet has been the addition of the fiber as well as the diet being calculated optimally and timely! I have calculated a lot of diets for parents and like Shira they were all on mirilax (or some other form of stool softener) or pedialax but no fiber in their diet. I would now like to recommend that anyone on the AA Diet with a Mickey Button (G tube) add a dose of fiber to their childs diet I believe you won’t have to use anymore Mirilax. Shira was on Pedialax and Mirilax for almost 61/2 years and we are off it completely now and her stool is healthier than ever! The brand of fiber we use is TripleFiber by RENEW LIFE. REMEMBER CALCULATE YOUR CHILD’S DIET OFTEN AND OPTIMALLY AND ADD FIBER TO IT! Let me know if you can also remove your child from Mirilax after adding fiber to their diet but before adding the fiber consult with your doctor and make sure your diet has been re calculated to insure your child is properly hydrated!

Where's Molly?

We have a few documentaries at home and Sammy is at an age where today he asked me if he could watch Where's Molly http://www.wheresmolly.net/ Years ago we were on the news advocating to get all the medical equipment we needed to keep Shira at home and care for her, get her injections to ward off illnesses etc. When we were on the news we had many calls from people that wanted to take Shira off of our hands and care for her. Yes caring for people is a business and when a person is extremely disabled the caregivers get even more money. This documentary came into my life a year after we started advocating hardcore for Shira and sometimes you just need something to grasp onto that justifies your actions and re affirms you are doing the right thing. This video is one of them. We realized watching this video that our "regular" son would be a better person having his sister at home. Today Sammy watched this movie and had a lot of questions he couldn't understand why a family would give up a child just because they had a disability. We are so proud of who our son is, that he doesn't categorize and separate people. Our hearts are constantly challenged by Shira's ongoing struggles and we'd be lying if we said we didn't suffer from moments of anticipatory grief . We live deeply in the present experiencing the joy our two amazing children give to each other. We've watched this documentary countless times and believe it is important to watch so that the confused can become enlightened and the knowing can be justified in their actions and life.