In The News
August 04, 2011
Disabled visitors left high and dry on area beaches
Brad Fisher pants as he heaves his daughter Shira’s specialized stroller-wheelchair up the steep, uneven sand path from Willows Beach.He enlists the help of caregiver Stephanie Davidson to pull the stroller up backwards, then pushes it the last few feet himself. Several short stairwells can be found along the length of the beach, but the rough-hewn little trail is the family’s only access down to the sand, where six-year-old Shira, who has the genetic disorder spinal muscular atrophy, loves to play.
Fisher and his daughter have tried out many beaches in the region. Even with its bumpy path, Willows is the only one that comes close to being friendly to Shira’s specialized wheelchair. It’s also ideal because of the hard-packed sand, rarely found on other shorelines.
Fisher is angry that public beaches are so difficult to access for people with disabilities, and doesn’t think adapting them would be hard.
“They might say ‘well, we could make a ramp there, but what are they going to do when they hit the sand?’” he said.“You leave (manoeuvring a wheelchair on the beach) up to us, but at least we’ll be able to get down to the sand. ”Tamara Lohner’s daughter, Charlotte, has the same condition as Shira. Even though they live downtown, they usually head toThetisLakeParkbecause it is the only lake with stroller-friendly access.
Visits to Willows in the past saw Lohner forced to carryCharlotteand leave the stroller behind.
“It’s hard; she’s like a really heavy, wet noodle,” Lohner said. Having a full-time job and a son with Down syndrome leaves her little time to worry about beach access. “I just don’t think about it that much.” There are currently no plans to improve accessibility atWillowsBeach, saidOakBayparks manager Lorne Middleton. He noted a low, sloping path leads to the water at the base ofEstevan Avenue.
But Fisher said large logs washed up on the path during the winter, making it a two-person job to hoist Shira’s chair over the logs. Middleton said he wasn’t aware the path was blocked and would address the issue. The Capital Regional District website (www.crd.bc.ca)lists three beaches with accessible elements:EastSookeRegionalPark, Elk/Beaver Lake Park andIslandViewBeach. OnlyBeaverLake has a path leading to the water, and has an accessible fishing float and boat launch.
There is also a ramp leading to the beach near Clover Point. Many Capital Region municipalities consider accessibility when planning for parks and public spaces. But it’s hit or miss when it comes to specific guidelines.
The City ofVictoriadoesn’t have any official policy relating to beach accessibility, said Todd Stewardson, acting assistant director of parks. “We’re not discouraging it, but we’re more focused on maintenance of the natural area,” he said.
Beaches are dealt with differently than parks, he said. Many factors come into play when adapting them, such as the specifications for the slope of a ramp and measuring its impact on the surrounding environment.
Saanich parks manager Rae Roer saysGyroParkbeach has gentle trails that lead from the parking lot to the sand. He tries to ensure there’s always a clear route to the beach. But he also doesn’t want changes to “sanitize” the beach. “We tend to manage beaches in a fairly natural, wild, West Coast style,” he said.
Joanne Neubauer, president of the Action Committee of People with Disabilities, said improvements don’t have to ruin a beach’s natural charm. “There are so many ways to achieve accessibility that wouldn’t necessarily change the overall atmosphere of the park,” she said.
Many beaches, such as the inlet byMountDouglasand the stretch alongDallas Road, have steep approaches and would be harder to adapt. But Neubauer, who uses a motorized wheelchair, said there are several that are fairly flat.
“I know there are geographic constraints, but there are other beaches where that’s not the case, and they still haven’t made any effort to make sure everyone can access the beach.”
She suggested a ramp could be cut out of the concrete walkway that runs alongsideWillowsBeach. “It doesn’t always involve rocket science.” Fisher and his daughter have tried out many beaches in the region. Even with its bumpy path, Willows is the only one that comes close to being friendly to Shira’s specialized wheelchair. It’s also ideal because of the hard-packed sand, rarely found on other shorelines.
Fisher is angry that public beaches are so difficult to access for people with disabilities, and doesn’t think adapting them would be hard.“They might say ‘well, we could make a ramp there, but what are they going to do when they hit the sand?’” he said. “You leave (manoeuvring a wheelchair on the beach) up to us, but at least we’ll be able to get down to the sand.”
Tamara Lohner’s daughter, Charlotte, has the same condition as Shira. Even though they live downtown, they usually head to Thetis Lake Park because it is the only lake with stroller-friendly access.Visits to Willows in the past saw Lohner forced to carry Charlotte and leave the stroller behind.
“It’s hard; she’s like a really heavy, wet noodle,” Lohner said. Having a full-time job and a son with Down syndrome leaves her little time to worry about beach access. “I just don’t think about it that much.”
There are currently no plans to improve accessibility at Willows Beach, said Oak Bay parks manager Lorne Middleton. He noted a low, sloping path leads to the water at the base of Estevan Avenue.
But Fisher said large logs washed up on the path during the winter, making it a two-person job to hoist Shira’s chair over the logs. Middleton said he wasn’t aware the path was blocked and would address the issue.
The Capital Regional District website (www.crd.bc.ca)lists three beaches with accessible elements: East Sooke Regional Park, Elk/Beaver Lake Park and Island View Beach. Only Beaver Lake has a path leading to the water, and has an accessible fishing float and boat launch. There is also a ramp leading to the beach near Clover Point.
Many Capital Region municipalities consider accessibility when planning for parks and public spaces. But it’s hit or miss when it comes to specific guidelines. The City of Victoria doesn’t have any official policy relating to beach accessibility, said Todd Stewardson, acting assistant director of parks.
“We’re not discouraging it, but we’re more focused on maintenance of the natural area,” he said. Beaches are dealt with differently than parks, he said. Many factors come into play when adapting them, such as the specifications for the slope of a ramp and measuring its impact on the surrounding environment. Saanich parks manager Rae Roer says Gyro Park beach has gentle trails that lead from the parking lot to the sand. He tries to ensure there’s always a clear route to the beach. But he also doesn’t want changes to “sanitize” the beach. “We tend to manage beaches in a fairly natural, wild, West Coast style,” he said.
Joanne Neubauer, president of the Action Committee of People with Disabilities, said improvements don’t have to ruin a beach’s natural charm. “There are so many ways to achieve accessibility that wouldn’t necessarily change the overall atmosphere of the park,” she said.
Many beaches, such as the inlet by Mount Douglas and the stretch along Dallas Road, have steep approaches and would be harder to adapt. But Neubauer, who uses a motorized wheelchair, said there are several that are fairly flat.
“I know there are geographic constraints, but there are other beaches where that’s not the case, and they still haven’t made any effort to make sure everyone can access the beach.” She suggested a ramp could be cut out of the concrete walkway that runs alongside Willows Beach. “It doesn’t always involve rocket science.”
June 27, 2011
Shira Helps Celebrate the governement investing 3.5 million dollars into CanAssist
BC innovations boost independence for seniors, people with disabilities
June 12, 2011
Help Fill A Dream Brings Disney to Shira in our back yard for her birthday
June 12, 2011
Shira Fisher with father Bradly, mother Maxine and brother Sammy, 8, during the birthday party at her home in Saanich Sunday, June 12, 2011.
Photograph by: Adrian Lam, Times Colonist
Saanich yard transformed into mini-Disneyland for precious birthday
By Larissa Johnston, timescolonist.com June 12, 2011
Mickey and Minnie Mouse, princesses and a live band playing Coldplay and Justin Bieber covers: it’s any six-year-old girl’s dream birthday party. But it was especially a dream come true for Shira Fisher, who used to celebrate with cake every month because she was born with muscle degeneration and weakness of spinal muscular atrophy. “We celebrate a lot of things more than we ever have,” said her dad, Bradly Fisher. Children born with this don’t often live past eight months. Fisher is one of only two Greater Victoria children who have outlived the statistics. She has celebrated five more birthdays than most other children with the same conditions.
The six-year-old can’t swallow, sit up, roll over, lift her arms or do most physical things that other kids her age do. So instead of a family trip to Disneyland for her sixth birthday, the magic came to her. Her Saanich backyard was transformed into a magical kingdom Sunday, with her friends, family, neighbours, rabbis and Disney characters from Mickey Mouse to Chip the Teacup from Beauty and the Beast. The Help Fill a Dream Foundation and Victoria Costume granted Shira’s wish. A stuffed Cinderella doll was the best gift of all, Shira said. And although Shira was the birthday girl, she was giving out an important gift, too. “She has taught us to live completely, utterly, totally in the present moment,” Bradly Fisher said.
Published on The Jewish Week (http://www.thejewishweek.com)
Home > ‘It’s Not Just Tay-Sachs’
‘It’s Not Just Tay-Sachs’
Three new screening tests for diseases available as Jewish Genetic
Disease Consortium trains more rabbis, reaches out to intermarried.
Tuesday, May 17, 2011
When Shira Fisher was just 4 months old, her parents already knew that something was wrong. She had frequent problems with choking and serious “physical developmental delays,” said Brad Fisher, Shira’s father and full-time caretaker.
Her parents brought her to several different doctors, before she was finally diagnosed (with the help of Brad’s Internet research) with Spinal Muscular Atrophy, Type 1. SMA affects the motor neurons that control voluntary muscle activities, like walking and swallowing, and causes their degeneration. Cognitive abilities are generally not affected.
At the time of Shira’s diagnosis, “we’d never heard of it,” said Fisher, who was told by doctors that Shira had little chance of surviving past the age of 2, and that he — and mom Maxine and big brother Sam — should “take her home and love her.” The family refused to give up, pursuing experimental treatment and therapies, and Shira will turn 6 next month.
The Fishers did no genetic screening before getting married or having children. “It wasn’t on our radar,” Brad said. But today SMA is one of three new diseases recently added by the Jewish Genetic Disease Consortium to a growing list of conditions for which Jews should be genetically tested.
The JGDC now recommends that any couple in which one member has an Ashkenazic Jewish grandparent be tested for 19 separate conditions, up from 16 last year. When the organization was launched six years ago (though Jews had been tested for years before it began), it recommended testing for 11 disorders. Over the past six years, that number has grown as new screenings and tests became available. New to the list are SMA, Joubert Syndrome Type 2 and Walker-Warburg Syndrome. These diseases are not newly discovered, or recently linked to the Ashkenazic population. But since screenings for the genetic mutation for all three only became widely available this year, the JGDC is now cautioning Jews and others to take advantage of the tests.
While the medical advisory board “has known about these diseases” for a while, said Randy Yudenfriend-Glaser, chair of the JGDC, “unless you can screen, there’s nothing to do.” She also noted that couples who have been screened in the past, and are planning to have more children, should get re-tested for these disorders. And she wouldn’t rule out the list of recommended tests growing in size. “It’s never going to shrink because the diseases don’t go away,” she said. “People think we’ve wiped Tay-Sachs out of the population, but we haven’t; we’ve tested it out.” Carriers of the disease are still common in the population. The medical advisory board of the JGDC bases its decisions “on carriage rate, but also on the severity of disease,” said Yudenfriend-Glaser.
Randi Chapnik Myers knows firsthand just how devastating Walker-Warburg Syndrome can be. She and her husband were screened for Tay-Sachs before having children. When their first pregnancy, in 1995, ended after doctors said the baby would not survive beyond birth, they thought it was a fluke. And after having two healthy children, the Toronto family never imagined the problems that would ensue. Chapnik Myers lost twin babies in 2000, and then a third the next year. Doctors made a diagnosis of Walker-Warburg in two of the three fetuses. “Not only had I never heard of it,” said Chapnik Myers, “I was told after my first loss that it wasn’t genetic.”
She hopes that the new availability of screenings can help other women avoid her pain. “Having to wait until 20 weeks to be diagnosed, having a formed fetus growing inside of you, a human being, and moving in to maternity clothes and planning for a child” was incredibly difficult, said Chapnik Myers. “Going through seven deliveries for three children [the third child was born after all of the losses] was a strain emotionally and very physically.”
Since 2005, the JGDC has been reaching out to families, through its community outreach program, and to physicians, with its Medical Grand Rounds Program, hoping to spread awareness of the need for genetic testing in the Ashkenazic Jewish community. Last fall, as reported in this paper, the JGDC launched its Rabbi Education Program, aimed at urging rabbis to discuss genetic screening with couples during pre-marital counseling.
“[It] was the missing link which really rounds out our program,” said Yudenfriend-Glaser. To date more than 150 rabbis across the tri-state area have attended a seminar run by JGDC, and signed a “rabbi pledge,” promising to discuss genetic diseases with young couples.
Recent training events include sessions in Buffalo and Monroe, N.Y., as well as at the Jewish Theological Seminary earlier this month. JGDC is working on developing an online system for rabbis to be trained. Those who already took part in the sessions will receive updated information about the newly added diseases.
The JGDC’s goal is to combat the major misconceptions about Jewish genetic diseases — one of which is that intermarried couples don’t need testing. To that end they are also developing means to reach interfaith couples to raise their awareness.
One of the messages the JGDC deems most important is, “It’s not just Tay-Sachs,” said Yudenfriend-Glaser. Even as she tours synagogues and Jewish centers today, Yudenfriend-Glaser encounters people who are unaware of the dire necessity for genetic testing. She met with a rabbi this year “and he told me, ‘we don’t have any of that in our lineage.’ I did a double take,” she said. “You hear this from educated people; they really don’t realize how much is out there.”
Most importantly, she said, “people need to be advocates for themselves. They should go in armed with a list of the tests and say this is what I want done.”
Advocacy Through Dialogue
This article was published in Island Parent Magazine June Edition 2007 Feature Article and The Jewish Indpenedent
By Brad Fisher
If the time comes when your child is faced with severe medical challenges you might find that you have been cast out to sea in a boat with no oars, sails, or motor. All of a sudden your life will change 180 degrees. Daily routines will have to change to support the needs of the sick member of your family and the other family members. All the small problems in daily life will now become trivial as the big question, “what is life all about?” takes precedence in your life.
You will find little help where you most expect it from and some help where you least expect it from. Angels in many disguises appear in your life to help you get through this transitional period. The first thing you are going to think to yourself is, “Thank G-d I live in Canada and we have a socialized medical system; I will be taken care of.” After the devastating news of the first diagnosis you are going to find yourself bogged down in a Medical System that is under funded, under staffed and regionally centred in large urban areas. All of a sudden you will find yourself sitting at a computer researching for the best options for your child while waiting for answers from your GP who is too busy/tired/unavailable/in experienced in your child’s disease and whose time is spread so thin that you might feel forgotten even though the situation is life threatening.
You are now on the journey known as Advocacy. It is said that parents are the best advocates for their children¹s health as they know their children the best. Shouldn¹t our doctors know our children¹s state of health better than us? Why are we expected to discover our children’s medical problems before being diagnosed by our doctors? Why do we have to get a referral to see a Pediatrician?- shouldn¹t they be our children¹s front line doctors in the first place? Why has the diagnosis taken so long using so many doctors?
We go before our doctors like Dorothy, the Scarecrow, Tin Man and Lion went before the great and all powerful Wizard of Oz. Unlike the four characters in the movie we need the help of highly trained medical professionals to deliver the best possible care to our children so that they can experience the highest and best quality of life. But in these times we look towards those we think are supposed to have more experience with our childs condition naively forgetting that all the people in the medical profession and social work areas are only human. These professionals can suffer from the same maladies as the rest of the general population including: overwork, a stressful divorce, mental illness, addiction, abuse, depression, bankruptcy, skewed judgment, and most importantly a belief system that is different than your own and on and on; yet we gladly hand over our children to these individuals and follow their advice without questioning their credentials, work history or getting a second and third opinion on the treatment prescribed. We give more thought to our family’s security when hiring a nanny, cleaning person or handyperson; we are talking risk management!
In Dr. Jerome Groopman, M.D.’s (Professor of Medicine at Harvard Medical School, Chief of Experimental Medicine at Beth Israel Deaconess Medical Center, and one of the world’s leading researchers in cancer and AIDS) new book “How Doctors Think” he states “Usually doctors are right, but conservatively about 15 percent of all people are misdiagnosed. Some experts think it’s as high as 20 to 25 percent and in half of those cases, there is serious injury or even death to the patient.” According to Groopman, to be an effective consumer of medical services, patients need to realize there are two categories of physician thinking. “A physician’s emotions can colour his or her thinking and actions,” he said. “Patients need to know how to pick up on negative and positive feelings.” Dr. Groopman also states,” if a patient genuinely feels the symptom is different from anything they’ve ever felt, to red flag it – ask the doctor to take it seriously, not to stereotype and make an attribution error. If you think a doctor is not listening, search out a second or third opinion.”
What is the definition of advocacy? The Oxford Dictionary describes advocacy as, “A person who pleads a case on someone else¹s behalf – ORIGIN Latin: advocare (A call (to one¹s aid).” We are now speaking on behalf of our children. We are now researching our child’s illness to our fullest extent. We now have more scientific evidence in hand than our doctor, social worker, occupational therapist, physio therapist. We now find out that what the system wants to do for our child is obsolete, antiquated, not what we want and that we want to pursue a different avenue of care that we believe (from our research) will have a more positive impact on our child’s quality of life. If your doctors opinion is in contrast to your researched scientific documentation ask your doctor for cited information or similar evidence you can read, discuss the research with them and together make logical decisions together.
I have created a few simple steps that will make you an affective advocate for your child.
Documentation and communication has never been easier and more available than with the internet. If you don¹t have a computer there are many places you can use them from internet cafes, libraries, friends etc. It is true that there is a lot of information which is questionable on the internet but there is also extremely timely, cutting edge and relevant medical information available to the masses. Some of this information has to be paid for, for example medical publications of cited studies. We no longer have to use our doctors as the only source of medical information. We now have the ability to become highly knowledgeable and effective in the treatment and care of our children.
2) Doctors Information.
Ask to see Cited Studies, Clinical Evidence, Empirical Studies, Peer Reviewed Studies and ask for their personal opinions. Take the time to ask your doctor for all documentation regarding your child’s illness. Question what you are told and ask for evidence. This is not the time to follow blindly. Speak to an expert! Caveat Emptor -Buyer beware also applies to medical services being supplied to us even though the system is socialized. You deserve the best care for your child. Ask your doctor what choices in care are available to you.
3) Support Groups.
The internet is the fastest way to reach out to others that have been through what you are going through. Reach out by joining online chat groups. There is power in numbers. There are families out there that have been through what you are going through and will have great success advocating for their children. Find mentors through parents of children with your child’s illness. Often these parents will have done much of the homework before you and can cut your learning curve in half, pass along relevant cited medical information etc. You can also reach out to doctors all over the world that are experts in the field of your child’s illness and ask them for information to give to your doctor.
4) Put It In Writing.
If you have to convince someone in the medical system that your option of care is more feasible and in line with your philosophy then put it in writing along with the evidence backing up your argument. There is nothing more powerful than the written word. Before putting anything in writing make sure you are respectful, knowledgeable, organized and formal. The whole point is to convince your doctors that there is a better way to do things and that you want to work as a team in the best interest of your child.
5) What does your medical professional believe?
You and your doctor have to be on the same page. Ask your doctor what their belief systems are in this case. Ask them what they would do for their child if they had what your child has? What would they like to see as the outcome of their medical intervention? You have to work as a team with your doctors when you have a catastrophically sick child and if you don¹t have the same vision for your child’s treatment and its outcome then you have to find someone or go somewhere where you can get the correct care delivered to your child.
6) Media and Government
Sometimes the system fails. It will seem as if you are sitting in a small room with only 3 people in it screaming at the top of your lungs yet no one hears you. When all else fails and you have used every politically correct diplomatic form of communication at your disposal you might have to ramp up the pressure to get what you need. You should contact your MLA in your local government and the people you voted for. I would strongly suggest using the media. The media is a champion of human rights causes. Call your local radio and television stations.
Though our medical system often seems adversarial when you are depending on it in your greatest time of need you must strive to find common ground and work as a team to deliver the best care possible for your child. In summary 1) research and back up what you are asking for with qualified information 2) correspond in a respectful, logical, written format 3) if your child is not getting their needs met by your medical professional find another one that can deliver the appropriate care and 4) if all else fails go to government and the media. I would like to end this piece with a quote I heard on the radio from one of Canada¹s leading child advocates June Callwood,”Help should be defined by those that need it, not by those who deliver it.”
Brad Fisher is the full time care giver to his 41/2 year old terminally ill daughter Shira who suffers from Spinal Muscular Atrophy Type 1. Brad lives in Victoria with his wife Maxine, his 4 year old son Samuel and his daughter Shira. Brad can be reached at email@example.com
Little Miss Boops Runs The Royal Victoria Half Marathon
By Brad Fisher
When you are looking after a child with a terminal illness life can often be gloomy, depressing and tiring. Around mid August last summer I was up all night with my daughter, which was not unusual for her condition as she suffers from Spinal Muscular Atrophy Type 1. SMA is a terminal genetic disorder (similar to Lou Gehrig’s disease and Muscular Dystrophy) where the patient has a gene deletion which inhibits muscle growth and maintenance and the muscles atrophy. 1 in 40 people carry the gene and 1 in 5000 babies are born with SMA. Though my daughter is physically weak she is intelligent and developing like any other 17 month old; except that she has a terminal physical disability. As dawn broke I opened my lap top and entered my SMA support chat group online to see what was happening. Many people on the chat live back East and are 3 hours ahead. One of the members posted a story about Rick and Dick Hoyt the father and son Iron Man Team. I couldn’t believe what I saw. Here was a 65 year old man competing in the Hawaiian Iron Man pulling his physically challenged 43 year old son in a dingy during the swim section and then biking and running with him with a modified bike and wheel chair. Not only were they completing this grueling race, they were serious competitors beating out men in their 20’s (Dick and Rick’s story is inspirational and can be found on their web site at www.teamhoyt.com). I had been looking to do something out of the ordinary with my daughter but I really wasn’t sure what I could do with her. When the common cold can be potentially fatal for your child it limits doing anything in a public environment like swimming, walking in a mall etc.
I thought to myself, ” yeah, running, I’m going to run with Shira in Victoria’s Half Marathon and raise money for SMA Support Inc.” Well, I didn’t think about the fact that I hadn’t really done anything physical for the last year since Shira’s diagnosis let alone the last 4 years since my wife and I started a family. Shira is also very fragile. Shira has trouble swallowing, managing her secretions, needs constant suctioning with a special devise, she must lay flat on her back, and has a host of medical equipment which must be with her at all times to keep her stable as well as for emergency purposes.
The same day I watched the Hoyt video I loaded Shira into her pram like wheel chair with all of her equipment stowed underneath and took her out for a run. We started by just running down the block, then through Mt. Doug Park and then another mile and a half up the road down Lochside Trail and back home. Our first run was a 5 miler and Shira was beaming at the end of it. Not only was running a wonderful break from the monotony and stress of living with a terminal illness but it was great therapy for Shira; because Shira doesn’t move the constant jostling and fresh air was really good respiratory therapy for her.
When we arrived home I devised a run-walk routine of run 3 minutes and walk one minute with a minimum of 5 mile runs. I would run 3 to 4 times a week and on my off days we would power walk up Mt. Doug and through the forest for a minimum of an hour. 2 weeks before the race Shira and I ran 14 miles in 3 and a half hours. We took the run at a leisurely pace stopping to visit with dogs, cats, chickens, pigs and horses on our way out and back along Lochside Trail. By race day we were ready.
Race day was packed with excitement for us. The morning of the race our home was invaded by yellow jackets while loading the car, none of the inverters worked for the emergency equipment in the car and the rain would not stop falling. During the race Shira felt so relaxed and comfortable that she slept for 45 minutes. Even though we started 5 minutes after the race started and had to walk for the first 10 minutes Shira and I finished with a respectable time of 2:22 tag time. I could see the excitement, joy and sense of accomplishment on Shira’s face at the end of the race. My daughter and her terminal illness has taught me once again that there is a positive side to every situation even terminal illness. Shira and I raised over $10,000 dollars for SMA Support Inc. and more than that we have found an event that Shira can take part in with her dad. I would just like to finish with a quote from Rick Hoyt the physically challenged Iron Man competitor, “CAN.”
Brad Fisher lives in Victoria, is married, a Realtor by trade and has two children Samuel 4 and Shira 19 months.
DON’T GRIEVE FOR ME UNTIL I’M GONE
This article was printed in Vancouver’s Jewish Independent, Island Parent Magazine, and on http://www.everythingjewish.co.uk/ under the title of Dealing With Life and Death and won me second prize in the American Jewish Press’s annual competition in Feature Writing.
By Brad Fisher
Almost all of us go through our daily lives thinking or experiencing death from a distance. We talk with our friends about this person that is ill or those people that were unfortunate to have recently lost someone close to them, did you hear about so and so their child has………and on and on. Rarely do we look into our own child’s eyes and think about what we would do or how we would feel if they were to die instantly or from some terminal illness. When we do we can’t think about it for long because it is too horrific a place to go to. Well I have the unfortunate luck to have become a parent of a child with a recently diagnosed terminal disorder. I won’t get to descriptive about the disorder because what I really want to talk about is grief, living, dying and death. My beautiful daughter Shira has SMA or Spinal Muscular Atrophy type 1 (http://www.smasupport.com/, www.fsma.org/canada) . The prognosis is a 30% chance of living past 1 and a 15% chance of living past 2 and after that it is any ones guess but most of these kids die very, very, young.
What is it like to look into a beautiful 2 year old baby girl’s eyes that are gleaming with past, future and present and know that her time on earth is going to be short? Devastating, catastrophic, horrific, apocalyptic are not strong enough words to describe my breaking heart. When your own flesh and blood start heading down that long lonely road to eternity you feel like your soul is being ever so gently jolted from your body. The world has taken on an entirely new dimension for me. All I want to do is spend every last second with my daughter, loving her, holding her, memorizing her smell, her stare, her caress. There are moments when I cry uncontrollably, there are moments when I look towards heaven and thank Hashem for giving me this child and the chance to love her. As I sit in her bedroom and watch her sleep with the equipment humming in the background, the breathing apparatus strapped to her face, the oxymeter displaying her oxygen levels and heart rate, I have to pinch myself and ask, “What am I doing here?” “I didn’t ask for this job!”
I now feel the wind, rain and sunshine like it was the first time. I pray more. I listen more intently. I judge less. I cry more. I feel helpless and small a lot of the time. I often feel like I can’t relate to people the way I used to. We all know there was a tsunami in Asia and saw thousands upon thousands of people from all walks of life suffer greatly but we can never feel what they feel unless we experience what they have experienced. That is how I feel, like I’m in a distant land among strangers even though I know friends and family care for me deeply. There is camaraderie with those that have lost children. Not much has to be said when you meet up with these people as this type of knowledge and knowing travels easily between grieving souls with a glance or a hug.
Do I grieve? Yes. Do I think about my baby girl’s imminent death? Yes. When you look for information about dealing with death from a pre death perspective all you can find are books on dealing with grief after loss. But how do we deal with death as we go through the process? What do we tell friends? What do we want from our friends? Who should we tell? How should we tell them? What role does everyone in my life have in this horrible experience?
I recently began a heartfelt and enthusiastic journey back into Judaism. Through my religion and my religious community I have come back to a centre, a place where I view death as a process that gives life meaning. I no longer avoid death or look at it so negatively, in fact now I embrace death as I do life. After all, doesn’t life and death walk hand in hand? To not think of death daily is like not thinking about life daily which most of us are to busy to do. I know more than ever that this journey called life is short. Whether a life is 83 years or 18 months, compared to recorded history or eternity it is short. Shira has taught me that life must be lived with purpose or it is wasted. When we live our life with purpose then death is only the end of our physical life. Just think about those that have passed that touched your life in both positive and even negative ways. These souls are still touching you with memories because I trust that memories are soul. I have come to really understand and believe that what we take from this world is based on what we leave in it.
I feel so lonely and sad when I think of my daughter leaving me. I read some beautiful words taken from a Hasidic Sefer (from a book titled Wrestling With The Angel Published by Schoken) recently that gave me comfort, peace and hope. “How will we recognize those we loved when we meet them after 120 years in the world-to-come? If they died young, will they have grown old? If they were hurt or wounded, will they have healed? How will we know them, how will they know us if we have changed or aged? The answer is that we will know them, we will recognize them because they will be clothed and cloaked in the mitzvahs we do in their name.”
My daughter’s death and funeral does cross my mind though I try to cherish each moment, hour and day with her. I have talked about the ritual ceremony with all of my Rabbi’s, how much it costs, how fast it takes place after she dies, where the plot is etc. This too is a gut wrenching experience. Now I travel the long lonely road carrying my daughter towards her imminent death holding hands with my wife and my 4 and a half year old son.
If there is any advice I can give to onlookers who care, it is to reach out to people that are living with the diagnosis of loosing a loved one. Don’t be afraid as you can’t catch what you already have; but being with us in this journey holds up a mirror where you too must face your mortality. Lend a hand to those going through this difficult time, listen, take them food and just be there to go through the experience with them. Recently I spoke with a relative of my wife Rabbi Tennenhause to thank him for taking food to my 90 year old great aunt in Hollywood Florida after the latest hurricane. The Rabbi informed me that in Judaism there is a saying that goes,” May you always be on the giving end.” To be on the giving end is a mitzvah. Baruch Hashem.
Brad and Maxine can be reached at firstname.lastname@example.org