Wednesday, July 30, 2008

A Wonderful Article On Faith

Faith Through Tears

28 Tammuz 5768, 31 July 08 02:14
by Hillel Fendel

( Rabbi Yerachmiel Weiss, who lost six students in the Merkaz HaRav massacre, was interviewed by usually hard-hitting TV personality Ilana Dayan - and turned the show into an experience in faith amidst crisis.

Rabbi Weiss is the head of the Yeshiva High School of Yeshivat Merkaz HaRav. Five of the eight students murdered on Thursday night by an Arab terrorist from Jerusalem studied there, and one is a recent graduate.

Answering probing questions about his relationship with G-d when facing untimely death head-on, Rabbi Weiss spoke, with a voice alternating between choked sorrow and firm confidence, about his students, himself, and G-d.

A written account of such an intense discussion, as the one below, necessarily loses most of its sheer power. The interview can be viewed (in Hebrew) in full by clicking here.

Dayan first asked Rabbi Weiss what was his main memory of Thursday night. "I believe it was the actual identification of the bodies," he responded. "This was the strongest impression I was left with. I had to lift up the sheets covering them, one at a time. I had been prepared for some of them, because I knew they were unaccounted for - but the first sheet I picked up was that of Yonadav [Hirschfeld, 19, of Kokhav HaShachar]. He was a former student of mine. It was such a shock, so unexpected; I so much didn't want him to be there... I continued to hope that those whom I knew were unaccounted for might be in the hospital, because I knew some were there - but then I started to lift up the sheets, one after the other, and I saw [with broken voice] that they were all mine! It was so difficult..."

Q. Did you feel that your strength was leaving you?
A. No, no. It was more the realization that we were parting from such a large group, all at once; it was a terrible pain at the loss...

Rabbi Weiss said that there had been some thought that possibly the students should remain in the Yeshiva for the Sabbath, as they usually do on alternating Sabbaths. "But I felt that they should go home; their natural place to be after such a traumatic experience is at home, to be in their healthy environment, to cry with their mothers and with their fathers, and then to return anew to the Yeshiva on Sunday."

Q. You think that it is good to cry?
A. [after a silence] Crying is one of the healthy needs of life. One who does not feel, doesn't cry; one who doesn't cry, doesn't feel. How is it possible to lose six students [voice breaking] and not cry?! One would have to be totally closed and impenetrable! I told them that I would cry together with them; they didn't even have to be told that it's OK to cry.

Q. What was the hardest question they asked you?
A. They first wanted to know what happened and how it happened; this occupied them very much. Then I sat down with them and we started to talk about what happened. There was confusion, and pain... The loss of life is a loss of faith.

Q. That sentence is very significant, and I would like to try to understand it with you. If we can 'crack' it, and I'm not sure we can, then we will have learned something. [Commercial break] The sentence that you just said - the loss of life is a loss of faith - returns me to what you said in your eulogy at the funerals. There, in the plaza of the yeshiva, with thousands of students and former students listening, and with the eight corpses wrapped in tallitot [prayer shawls] in front of you, it appeared to me that you were somewhere else - that you were engaged in a totally private discussion with the Holy One, Blessed be He. Am I right?
A. Yes. Yes and no... I was not in a totally different place; I was in a place where the complexity of life - between the question, Why? [broken voice] Why did You leave me? --

Q. Is that permitted, Rabbi Weiss?
A. It is a must! [returning to his previous answer: ] I was in a place between that question and between the clear knowledge that everything is true and correct. That's where I was, trying to connect them.

Q. Explain to me that complexity. You seemed to be rebuking G-d, saying what great happiness He had arranged for Himself [by bringing pure young Torah scholars to Him] --
A. No, no. I was happy for Him. I'll try to explain it in a language that will be understood outside; stop me if it is not clear.

Q. I will. I'll just add that there was a feeling during this past day of intense media coverage of what is going on here that we were on the outside looking in, that we didn't quite get everything that was going on [in the Yeshiva atmosphere and culture], or what you were all experiencing and how you were reacting. And especially that eulogy of yours, in which you allowed yourself to take such a strong position against G-d - just a few minutes after you told the parents, 'G-d gave and G-d took.' How do these two go together?

A. They have to go together. To ask, to cry out, to sob - it's not coming from a place of detachment or distance; it's more like a child asking his mother, 'Why are you walking away from me now? Why can't I see you? Why don't you show me the good that is in you? Why are you covering it up?' And I said to G-d, 'Look, your Torah says that Adar is the month of joy - and I need that joy that You promised me!'

Q. But you said it with irony, 'Look what joy you arranged for yourself...'
A. It's not irony; it's a very deep truth. It is the depth of faith-based truth. You [G-d] have great joy; you have added wellsprings of joy in Heaven to the very source of life.

Q. Could it be that right this minute there is a student here who is experiencing a crisis of faith?
A. For sure. If not, something is wrong. They should not view things just in terms of, 'I prayed, so I deserve it.' ... They have already come to me with their questions. You must understand that I am also the homeroom teacher of the 12th grade, and I gathered them together, and invited them to ask their questions. The most basic question - and I don't know how it's possible not to ask it - is how could it be that they were killed while studying Torah?

Dayan then moved the focus of the discussion, asking if the sense of having been betrayed by the country or the government during the expulsion from Gush Katif was being played out in the students' reactions. Rabbi Weiss said that this was not the issue, and that he is now concentrating with the students on the significance of death and the like. When she pressed the matter, however, Rabbi Weiss said, "I believe the problem for me is less one of betrayal and more one of simple blindness covering the eyes of our leaders. They thought that it [the withdrawal] might work, they tried to make peace - fine. But now - open your eyes and see what's going on here! It's natural to hope for peace and to try and all that, but now they just have to look around them and see what's going on. That is much stronger for me than to worry about betrayal and the like."

Rabbi Weiss said that among the students, the attitude towards the State is very complex: "Certainly some of them feel less connected to the State than they did before; others do not... I don't have to convince them to enlist in the army; they want to."

When Rabbi Weiss said that he had returned home from a funeral just a half-hour before the Sabbath, Dayan asked, "What type of Sabbath did you have?"

Rabbi Weiss reflected and said, "Our Sages taught, 'Shabbat hi mi-liz'ok' - on the Sabbath we do not cry. We try to take leave of pain and sorrow on the Sabbath. It may seem artificial, but, in fact, it is very deep and gives much strength. We don't forget what happened, but - there is some type of agreement, of acceptance."

Q. Agreement with what, Rabbi Weiss? With what is there to agree? With the loss of eight young lives? With the futility of life? With what is there to agree?
A. With the 300 students who are alive. With Am Yisrael Chai. Agreement with the hopes of life, with the faith in life, with the health of life, with the progress of life.

Q. Excuse me for interrupting, but I would truly like to understand: Isn't there something in this consent that nullifies the sanctity of those who died? or that minimizes the importance of the individual who died?
A. You asked me what I'm happy about on the Sabbath, and I say that I'm happy with life, with the smiles of my grandchildren, with the fact that life continues. If you ask me if the fact that I accept G-d's decree lessens the value of those who were killed - on the contrary. It could be that they were chosen specifically to atone for the entire nation; can I possibly know these things? All these Heavenly calculations are totally beyond us, they are on a different sphere. Our Sages said, in a very picturesque manner, that the keys to life and death are in G-d's hands; we have no say.

He then proceeded to discuss the difficult issue of the Red Heifer [Numbers 19], "which is very complex and deep, but in brief we can say that it comes to purify the impurity of death. Death harms not only the one who dies, but everyone around him. This loss is called a type of impurity. King Solomon wished to understand how the Red Heifer purifies the impurity of death, but was not granted this understanding. Only Moses was allowed to understand it. Moses is on a different plane; he could communicate with G-d as if through a clear crystal, without losing his normal senses. He can understand how death is purified; we are not there. We know that it exists, and that we are on the way there, and the world is getting there, and the world will get there.

Q. Did you, in the course of this Sabbath, ask yourself questions that you had never asked yourself before?
A. [chagrined smile] I asked questions that I had not asked in a long time. When I was younger, I asked these questions... Let me say that as Bialik wrote in a poem, 'Satan has not yet created vengeance for the blood of a small child.' That is to say, there is no theoretical difference between the death of one child or of 100; both are bad. We deal and struggle with these questions of Divine justice and evil and the like throughout our whole lives.

Q. What will remain with you from this past Thursday?
A. [silence, then with a broken voice:] Pain. A person lives and is nourished from whatever is around him...

When asked if he had already begun to miss his dead students, the rabbi's face broke out in pain, and he could barely eke out the words, 'For sure.' Asked if his faith could help him, he quickly recovered and said, "It's totally different. Faith is my relationship with G-d, and the loss we suffered is something else... Let me quote to you from Rabbi [Avraham Yitzchak] Kook, in his series of works called Orot HaKodesh, the Lights of Holiness. He writes the following sentence, which requires much time to explain, more than we have now. He writes: "Death is an imaginary vision. Its impurity is its deception. That which is truly the strength of life, people call 'death.'"

Q. Perhaps, nonetheless, you can explain it, as you would to the brother of one of the boys who would come and ask you.
A. I don't know if I could; I would need time to explain. I would have to explain to him that life begins with the One Who gives life, and doesn't end; it is freed from the burden of the body, and then continues in another place... We know that from our point of view here, we truly see death as the worst thing; our whole lives are dedicated to preventing death. Actually, we don't really live life from its positive aspects, but just in order to run away from death. As Rav Kook says, we are just afraid of the opposite of death. But we know that there is a place where life is truly positive, and that's where it continues [after death].

Q. I would like to ask you, Rabbi Weiss, if despite all, and with all the faith and values that enwrap you, and all that you know and teach, if despite all, perhaps there was a moment that you felt that you might be on the verge of a break.

A. [after reflection:] I will tell you something that comes from a place that you might not expect. I thought [voice breaking, speaking slowly] that, if this place is hit so strongly, then perhaps, it's not right for me to be here at the head of it. Perhaps someone else is needed who is better than me, someone who might not be hit as bad. And if it's because I'm so good that I'm getting hit, then perhaps that also means that I shouldn't be here.

Q. [emotional herself] It still appears to me that the students of this yeshiva have merited to have an outstanding rabbi and educator. Thank you very much.

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"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
"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 (from her book Unchosen The Hidden Lives of Hasidic Rebels)

Monday, July 28, 2008

Just A Regular Day

July 28, 2008

Today wasn’t that eventful we just played with Shira around the house, the usual routine that kids like to do through the day: lots of reading, art, playing with toys, side lying, standing in the standard etc. Sam went to gymnastics camp in the afternoon but the poor little guy was stiff from riding yesterday. Sam woke up and staggered out of his room saying, “why do my knees hurt” and rubbing his legs. I had to explain to him that you use different muscles when riding. I remember those days of not riding for a while then you get on the horse and the next day you can barely walk. On another note, Shira’s left hand is starting to contracture quite severely so I have put in a request to get Shira night splints. We are slowly working on the power chair but it needs some more adjustments to the head gear but Shira will do great. We are looking forward to the first week in August when we will be trialing a computer with eye gaze system for Shira. That’s about it. Our injured cat Lila is back to her old killer self. Maxine is a little run down and has a minor cold. That’s it that’s all.

Sunday, July 27, 2008

Horse Back Riding and Picnic

What a day. When we woke up it was completely over cast and looked like it was going to rain. Our plans for the day were to take Sammy and Shira horseback riding in the morning and try and make the Chabad picnic at 4:30. It’s always difficult to plan anything for the afternoon with Shira because she really needs her ventilator breaks to recharge. I advise all parents to definitely give their children bipap breaks through the day. You don’t want to burn our kids out just to make them as regular as possible. Our kids have SMA and need support through out the day. Anyways, we had a great time at the stable. Sammy road in the ring and then I led him around the property. Sammy rode for about 45 minutes which is good considering he hasn’t been on a horse for over a year. Shira was so excited. One of Shira’s favourite videos is Elmo’s Wild Wild West video. Shira has picked up some cowboy lingo and she loves to say, “Yeehaw, Giddy up, Yahoo.” She is so cute. When that big grey draft horse stuck her head in Shira’s face Shira just beamed. That huge horse was so gentle. We made it home by about 2 o’clock and Shira went down for a nap. At 3:45 we woke Shira from her nap which we never do to go to Sammy’s summer camp final barbecue. Shira had a bit of a hard time with the extremely windy conditions at the beach but we were there for about 2 hours. When we arrived home Shira wanted to stand in her standard so we did that for about an hour and a half and watched elmo and different things on the computer together. At 8pm the usually routine with Chest Physiotherapy, bath, hair combing, teeth brushing, preparing her food for the night, etc. then back on bipap at about 10:20 and here I am writing in our diary. That was our day. And so it goes (to borrow a phrase).

Saturday, July 26, 2008

Here is an excellent video about Spinal Msuclar Atrophy to watch. One of my 3 favourite doctors is on this video, Dr. Kathryn Swoboda

Here is a link to the full un edited version of the above video:

Thursday, July 24, 2008

July 24, 2008

Well the last 2 days have been extremely stressful. Where we got the idea that we could have another pet is beyond me. I guess we just want to give our son and family every regular household has but in reality we couldn’t deal with the added stress of another animal in the house; I guess I’m enough! 2 days ago at 6 in the morning I am woken up by the horrible stench of feces and as soon as I opened my eyes I saw the culprit; our little baby cat David. There was feces all over the pillow next to my head and it was stuck between the poor little guys paws. Under regular circumstances I can deal with this type of stuff but when you sleep as little as I do and have no free time as I do I just couldn’t handle the fact that we have something else we have to care for. Some families have many more children and several animals but I can’t deal with it as I want to spend any extra time I have with my son and my music etc. Needless to say I had to wash the poor little guys paws under the faucet and we all know how much cats like that. After cleaning the kitty litter boxes I went to throw the dirty litter bag onto the front stoop to be taken out later by Maxine when all of a sudden the cats slipped out between my legs and I was so tired I didn’t see it. As I walked back up my front steps inside the house I noticed how quite it was and realized I had let the cats out. I looked out front and couldn’t find them and as I walked around the side I saw David but not Lila. I wasn’t worried about Lila being a full grown cat. As I walked towards David of course he started to run from me so I ran and dove on him which didn’t impress him. I haven’t had to make a full on tackle for a while but lucky for me I had lots of weeds around the side of the house that the cat got caught up in as he saw me flying through the air towards him. I caught him safely and brought him into the house only to notice that he had even more feces stuck between his back toes and dried all over his fir so we had to do the bath again. I finally got him all cleaned up but I realized this is not fun and the stench in the house was out of control. Under regular circumstances I can deal with this but you have to realize that Shira lies on the floor all over the house and we have to suction her therefore we have to keep a decent level of cleanliness within our home. What is suction? We stick a suction catheter to the back of Shira’s mouth and suck out the secretions just like at the dentist but further back. So, we no longer have the cat. If the kitten was our only cat we would have kept him but since Sam already has a cat (he chose from the SPCA)Sam understood; and he still has a cat. Live and learn is the name of the game but we are often reminded of Shira’s disability or our limitations due to dealing with Shira’s disability. Its hard not to consume, consume, consume in our society and we have been living very low for a few years now. We are in uncharted territory here living and caring for Shira so our main course has stayed true with keeping life as regular as possible for Sam and delivering Shira the highest level and best care. On another note. Maxine's mother Ruth was here for the last 2 weeks. Both Sam and Shira had the best time with Ruth, reading, singing, going to Playland in Vancouver, playing at the park and the days Ruth spent with Sam at Camp Gan Israel. I know they will miss their Bubby very much as well as Maxine and I. Thank you for the joy you bring to the kids Ruth!

Tuesday, July 22, 2008

July 21, 2008

Today was a usual day except for the fact that Maxine and I got out on a walk together with Shira of course. I never leave Shira. As I am the best one at reviving Shira when she crashes I have to be close at hand and Shira is always with me. The only time I leave Shira is for a haircut or to go to the doctor and then Shira is on her bipap at nap time. Maxine is proficient at looking after Shira but I have always been the one that can bring her back from the extremely low vital signs. We went for a walk in our neighbourhood and stopped at Starbucks for a cold drink.

Yesterday was a day when all the fears for Shira and her life show up and there is nothing you can do but sit with all those fears of what her death might look like, what life might look like after death, how it might affect our son etc. Its just terrifying stuff. It’s a lonely road looking after someone so ill. Most people really just don’t have the time of day for the healthy let alone someone that needs the support Shira needs or her caregivers need. People mostly suck but I have learned once again how totally selfish the human race is. All you have to do is read books like, “How To Win Friends And Influence People” by Dale Carnegie to really understand that. I got this book when I was 16 and have read it over 30 times in my life and again recently. The whole premise of the book is how to manipulate people in a way that makes them think you like them. Really your supposed to find some trait you do actually like in a person and focus on that so you don’t come across as fake. Its really a pitiful statement of society in general because it really focuses on getting what you want out of other people.

Acceptance is a very hard thing to do. Accepting other people’s weaknesses and its especially hard under these circumstances. Having and giving compassion to others while you really need it is the most challenging position I have ever been placed in. People will call me up, tell me about their life, their worries, their losses, their business problems and not even ask about Shira and how its going. It just sucks the life right out of you sometimes. I was going to sensor myself on this web site but again why should I. This web site is set up to help the countless people that have kids like Shira and I’m not going to white wash how incredibly hard it is to care for a child like Shira. The fact remains that the hardest part of caring for someone who is sick is the lack of compassion and emotional support from people. You think when this happens to your family that systems and family are in place and for some it is true but of the many, many families I have spoken to most of them feel abandoned or that the shelf life of compassion and understanding for their situation is about the same as the apples in your refrigerator.

Then you have those that will tell you that you chose to care for your kid, you could have let them die and you wouldn’t be in this predicament. Well, those people are on my do not resuscitate list and should I see them lying on the street I’ll be sure to step over them as I pass by them watching them gasping to live. That’s what I would like to think anyways and that is my reaction to how that statement and those people but in reality I would and do help anyone in trouble.

All I can say is thank god to SMA Support, Youtube, etc. that have given me the ability to reach out and be reached by other parents of SMA children. Without other parents that have experienced what we are experiencing we wouldn’t have a bench mark to use to navigate through the insane waters of the medical system. Other parents have been buoys that keep us off the rocks of our mostly incredulous society. We have met some wonderful people but most are indifferent. This journey has been an interesting forced study in society, social matters of conscience, inter personal relationships etc.

I’m going to constantly remind people to reach out to people. In the words of the Dali Lama "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

So find a person, a family etc. a kid, and make them your project. Many people have asked if I do this and yes I do this. There is nothing that eases the pressures of our situation more than reaching out to others and helping them get through their challenge. So don’t wait, reach out to someone today and consistently, go past the shelf life of your ability to be compassionate.

Yesterday we had Sam’s councillors here from his camp Camp Israel and they played with Shira and Sam for a couple of hours. Shira really enjoyed herself and she wanted to stand in her stander and show them what she can do. The day ended uneventfully which is always good news in the SMA world.

Saturday, July 19, 2008


Today was a nice day. We started the day as usually with CPT then Physio. After physio I put Shira in her standard and chased Sam around the house. Then we all went onto the back porch and spent some time outside while Shira was in her standard. Shira spent a lot of time with her Bubby today reading and playing. After our naps we all spent a lot of time in the living room putting together puzzles, reading and just hanging out together. Our full grown female cat Lila disappeared all day and we couldn’t find her then Maxine noticed Lila in the window of our neighbours garage. Fortunately Lila was not lost and she returned home hungry and that’s it. Our newest addition to our house is our new male cat that Sam named David. I don’t know why he chose this name but I think it has something to do with King David he learned about in Hebrew School. We all said Havdalah tonight which was nice. Usually its just Shira and I at night. Shira loves the candles and songs. That’s it. And so it goes.

False Prayer

He who prays in sorryow because of the bleakness which burdens his spirit, and thinks he is praying in fear of G-d, or he who prays in joy because of the radiance in his spirit, and thinks he is praying in the love of G-d his prayers are no good at all. For his fear is the burden of sadness, and his love is nothing but empty joy. - Martin Bubers Ten Rungs

The above is so true. Intention is everything. Even the Samurai have to have pure intention before going into battle. In our situation its so tough not to pray and ask while in this time of total distress. I try not to ask the powers that be or even of myself when the fear of loss and our reality take over my thoughts. I wait for a time of clarity before seeking spiritual guidance through prayer or meditation.

Laws Of Visiting The Sick

If you know of someone sick, lonely etc. call them and make contact. Don't wait to be supportive to somebody. We no longer live in villages so we are encapsulated in our homes, walled in and surrounded by fear of loss; us loosing what we have. Being supportive to someone doesn't cost a dime it just costs a few minutes of your day.

The Laws Of Visiting The Sick - When a person is ill it is a Mitzvah (good deed) for everyone to visit him/her, for we find that the Holy One, Blessed is He, visits the sick, as our Sages of blessed memory explained the verse, "And God appeared unto him (Abraham) in the plains of Mamre, teaching us that, "He cam to visit Abraham when he was sick.Even a great man should visit a less important person even many times a day. The more one visits the more praiseworthy it is, providing it is not becoming bothersome for the sick person

The essence of the mitzvah to visit the sick, is to determine the needs of the patient to see what has to be done for him, and to make him comfortable with his friends. You must also bear in mind to pray for mercy on his behalf. - Kitzur Shulchan Aruch

Thursday, July 17, 2008

July 17, 2008

Wow what a beautiful day!! Shira had her power chair delivered today. We still have a couple of things to do on the chair but for the most part it is done. For all you newer SMA patients out there many of our kids can better manage their secretions as they get older. As I mentioned yesterday Shira has been using her standard every day now. The positioning in the chair is quite a bit different so it will take some time for Shira get used to the chair but once she gets the hang of it I know she will be begging to get in the chair often. Right now our local senior mens baseball league is in playoff mode. Shira and I went to a game tonight. Shira absolutely loves baseball. Baseball is an amazing sport. After watching a couple of innings you feel like you have been transported to a different time. Baseball flows very differently than contact sports. Most of the time the ball is driven low and hard and caught for an out or popped up for an easier out. Every once in a while plays take great skill, agility and strength. Shira has really connects to baseballs flow and mellowness. I’ll never be able to watch a game again without it reminding me of my daughter. I almost forgot. Sam and Maxine brought home a kitten from the pound today. The cutest little male cat with smooth fur mixed with spiny fur. The cat has black stripes and looks similar to our cat Lila. I’ll post a photo soon. Sam picked out the cat. We let Sam pick the animals as he seems to possess an uncanny ability to choose animals with great dispositions. That was our day: Blue skies, baseball, our new power chair, and the new addition to our family.

Wednesday, July 16, 2008

July 16, 2008 Update

July 16, 2008
What a great couple of days or weeks rather. The weather has been amazing and the weather though a dull subject in most conversations really affects SMA patients. Since last year Shira has been obsessed with baseball. Starting in March a teenage girls fast pitch league has been playing down the street at a local park. Shira and I sit in the stands taking in the baseball and gross out all the parents in the stands as I suction and re position Shira. I never have to worry about a place to sit. All I have to do is start suctioning Shira and that opens up a few spots. Shira loves the energy of the spectators at baseball games, the uniforms, the sound of the ball cracking off the bat, the ball flying through the air. Since the games are free and held at local parks spectators bring the dogs and Shira is crazy about dogs!!; Enough about baseball.
Shira has also taken a liking to her standard. A standard is a device used to hold a patient in place using straps etc. while you change their position from the horizontal to vertical position. It was thought that this device and standing helps a patient develop bone density. Its now known that there is very little evidence that bone density is increased but the obvious positive outcome of using a standard would be better internal organ alignment and socialization benefits from an upright position. Shira used to hate the standard and would scream and cry when placed in it. Now Shira asks for it and really enjoys her time in the standard. Its my opinion but I believe there is also a correlation between consistent physio therapy sessions that make it easier for a patient to be able to handle the standard.
On another note. I learned through another parent that a family fighting to get their child on the NIV Protocol used Shira's web site to convince doctors that the NIV Protocol is viable treatment. Unfortunately the doctors moved so slowly that the child is now in the PICU and I haven't heard what has happened to the child. Yesterday was a really fun day. Our local community of Saanich puts on a musical series in local parks for a month and last night the event was held at the park down the street. A latin band was playing and Shira and Sammy had a blast. Sam was up playing with the band while Shira had the greatest time watching all the kids and people dance. There is nothing like sun and latin music (it would have been nice to be sucking back a few cold beers or margaritas at the same time).

Monday, July 14, 2008

Shira in Standar Video

Shira talking in her standar July 13, 2008
Shira used to hate her standar now she asks to be in it.
If you would like more information on standars you can go to
Shira's web site at under the care tab and look under
Occupational Therapy/Standar

Photos of Shira July 13, 2008

Here are some photos of Shira in her standar. We use Ankle Foot Orthosis as well as Knee Immobilizers so that Shira is supported while standing. Oh yeah we also use a Hensinger Neck Brace.