Wednesday, December 31, 2008



Shira has had 2 major hospitalizations since being diagnosed with SMA Type 1 at 4 months old. The first time Shira was hospitalized was with RSV or Respiratory Synctal Virus at 6 months of age. During the first hospitalization I read doctor Bach’s book Management Of Patients With Neurological Disorders and Non Invasive Ventilation as well as had the Paediatric Intensive Care Nurses, Respiratory Therapist and Physio Therapist train me so that I could deliver the intensive care Shira needed at home. Through the years my skill set has increased from watching other parents via video conferencing as well as the exchange of ideas over the SMA support inc. chat. Shira was recently hospitalized and again I picked up some new skills. I hope these suggestions can help you.

The information below is specific to Shira but as I have learned from so many parents that have had great success caring for their children during times of critical illness and have applied their methods to Shira’s care. By no means do I suggest that this is a complete protocol or the only way of delivering critical care. If you have any suggestions for me please forward those as I am always willing to broaden my skill set in Shira’s care.


Shira is connected to an Oxymeter 24/7 but this is especially true during times of acute illness. Shira’s Oxymeter is set at 70 for the HR low and 175 for the HR high. Oxygen alarm is set at 90 for the the low and no set for the high. The Oxymeter warned us too many times to count in the past. Doctors were worried that we would watch it but I don’t. Remember when the alarm goes off always check the patient first!!! Machines can lie!

Before giving Shira her CPT session!

Before giving Shira CPT I will turn off her food and make sure to aspirate her stomach (remove its contents via 60cc syringe). This will help insure Shira does not throw up during her session and aspirate her stomach contents.

How often should I give my child Chest Physio Therapy or CPT?

In the hospital you will here the doctors and nurses use the term Q2 or Q4 for delivering treatments and drugs. These are the intervals the delivery will occur i.e. every 2 hours or every 4 hours etc.

When Shira is sick with a cold I give her CPT including cough assist treatments every 4 hours and ramp it up to every 2 should need be.

Bipap and CPT: This time around I learned from another parent to leave Shira on bipap while giving her CPT so that Shira doesn’t crash. The other advantage of giving CPT on bipap is that your child will have more inflation and air flow allowing for a more aggressive treatment.

How often should I use the cough assist?

I use the cough assist during every CPT treatment. If Shira is having trouble coming off her bipap during these sessions and her Oxygen levels are low I will bleed in oxygen in line into the cough assist during treatments. The level of oxygen I use depends on how sick Shira is and to what level her Oxygen is. I will also give Shira coughs and vibes (hand technique for shaking the chest to loosen secretions) in between CPT sessions as needed. I have Shira’s bipap on her head so that when the CPT session is finished I just have to pull down the mask over her nose.

Suctioning when and how often?

Conventional medicine suggests that suctioning can promote secretion development. Because SMA Type 1 children have a difficult time swallowing either having an inaccurate swallow or no swallowing capability I say suction as needed!!! Shira has used 10 FR suction catheters for her oral secretions since 6 months of age and 8 FR for nasal suctioning. I only nasal suction when Shira is critically ill otherwise I don’t nasal suction as the nose bleeds easily and can become easily infected.

Thick Secretions: This time around Shira developed intensely thick secretions and I used 12 FR catheters for her mouth and bebonkers for her nasal suctioning. For deep nasal suctioning I used 8 FR. Catheters and I lubricate the catheters with medical sterile lubricant.

Vaso Vagal Nerve Response: When deep suctioning through the mouth it is not uncommon for our children’s vital signs to suddenly drop i.e. heart rate thenO2 and the minute you stop it regain itself. This is known as a Vasal Vagal Nerve Response. Be careful to watch the Oxymeter while suctioning in case this happens and pull the suction catheter to the front of the mouth should it happen and wait for the HR and O2 to regain itself.

Throwing up what should I do?

1) Immediately turn your child on their side and deep suction to the epiglottis be careful not to scrape anything on the way down.
2) Make sure you open their g-tube and let it drain or take a 60ml syringe and aspirate their stomach (remove its contents) so they don’t throw it up and aspirate (breath in ) the stomachs contents.
3) If you are comfortable using the cough assist you can put it on manual mode and time the exhale with your child and give them a couple of big exhales followed by suctioning to remove any stomach contents that are accessible to the suction catheter.
4) I then give Shira some extra coughs bleeding in O2 with the coughs with both inhale and exhale. If your child is really unstable at this point and might throw up again forego the coughs as you don’t want to induce vomiting and the possibility of aspiration.
5) Stomach Contents: These can be re injected into the stomach after aspirating it as it contains the healthy bacteria found in the stomach.
6) Feeding: See Food How Much How Often below

Oxygen. How much how often?

I follow the NIV Protocol recommendation of O2 being delivered at <95%. I’ll add just enough O2 to bring her back to 97% .

Ambu Bag: Should I have one?

I find the ambu bag the most effective way to give restful deep breaths to Shira after a major extreme bradichardia event or mucous plug removal. Again Shira’s bipap mask will be half on with the mask sitting on her head with her face exposed so that I can give breaths. Be careful not to over inflate your childs lungs while using an ambu bag. Again I will run O2 inline with the ambu bag for giving breaths if Shira’s O2 is <95%. The wonderful thing about using an ambu bag is that you can perfectly time the breaths with the patient so that the patient doesn’t have to change their timing which you have to do with cough assist. I strongly suggest learning how to use one of these bags effectively as they are easy to carry with you. I have one with me where ever I go. If you child plugs while on a walk you can use the ambu bag and supportive coughs to remove the plug and keep bagging them until you get to your vehicle where you have cough assist and bipap waiting. Some parents only walk with both bipap and cough assist with them. It always depends on your skill level and comfort zone.

Nebs: How We Deliver Them

Nebulizer treatments are a main part of critical care protocol for respiratory illness. Shira isn’t on any broncho dilators when healthy but in the hospital she receives treatments of Flovent and Ventolin. Sometimes other broncho dilators are used but you will have to decide on which ones depending on illness and severity. The first time Shira was hospitalized we took off her bipap and delivered the medicine through a spacer set up which was very difficult and looking back ineffective when the patient couldn’t breath off of ventilation. This time we delivered the medicine by using the ambu bag, and bagging it in while also running in O2. This was very effective and in my opinion helped shorten Shira’s hospital stay. The less we make our children crash and still deliver affective treatments the quicker they recover from what I experienced this time.

Food: How Much How Often

There are many variations as to what to do depending on what is ailing your child. With Shira I tend to put her on just her vivonex which is double diluted. I then adjust the mixture so that Shira gets 70% of her daily vivonex and 30% pedialyte. It is important to make sure that Shira is urinating and is not becoming dehydrated and that potassium levels are kept up. And again if Shira really isn’t doing well I’ll go into the hospital and have blood work done to make sure all is well. Shira is on a bolus feed so I drop her feeds to a continuous feed. I still make sure I vent and flush Shira at her regular intervals. If Shira has been vomiting I’ll put her on an open vent using a 60cc syringe running her food line into the open syringe.

Bipap: How high do I go with the pressures?

Shira is typically on fairly low bipap pressures to begin with. PICU doctors will increase these pressures and then do blood gas tests to check ventilation. We obviously do not have this option at home. Seriously over ventilating a patient can be harmful especially on the EPAP not allowing enough CO2 to escape so its important to watch your child carefully if you are playing with pressures. Parents that have been at this a long time know the ranges that work for their children in times of good health and in bad. I know for Shira she can handle moving from 14/4 to 18/7 when sick while her back up rate pretty much remains the same. If you are unsure what you are doing consult with your Pulmo doctor.

Hospital: When Do We Go?
When I can no longer keep Shira’s O2 at 95% while giving supplemental O2 I will take Shira in for a mucous swab and an X-ray on her chest. Every family has a different protocol for this but you will know when you feel like you are loosing control. I don’t like to wait to be totally out of control of the situation before heading to the hospital and prefer to be more pro active so if Shira completely crashes I have a team behind me. Again some parents are able to manage severely sick children at home but you need a lot of experience delivering nebs but more importantly a high skill level in reviving your child and removing extreme mucous plugs. I say, “It’s better to be safe than sorry.” Just listen to yourself and follow your intuition.


Shira Update

Well we have been back from the hospital since the 24th of December. When Shira was sick she was on bipap for about 17 days straight which means she became dependent or biapap dependent. Bipap is bi level positive airway pressure and is the type of respirator she uses. This type of ventilation is considered non invasive vs. tracheostomy which is considered invasive because it takes a surgical procedure to introduce the system to the body. Anyways, we left the hospital while Shira still had a little adolectasis in her left lung but she was well enough at that point to be managed at home. Because we have a battery back up system and true sign wave inverter we were able to transport Shira back home while on her respirator. We took an ambulance from the hospital because it is so much easier to load her onto a gurney with all of her equipment, slide her into the ambulance and have the extra 2 sets of hands to bring her into the house. Once home the recovery really started. It was so great to get out of the toxic hospital air and lighting. Our first days at home were spent getting Shira slowly off of bipap and getting her food back up to speed. Shira is fed through a tube in her stomach and has been fed this way since 6 mos. Of age. Shira is now on her regular feeding schedule and volume as well as spending about 6 hours a day off of bipap. Yesterday was our first walk in 22 days which is way too long to be indoors although I remember being inside for more than 3 mos. At a time when Shira was first diagnosed. Shira is a little weaker than before going into the hospital but it is my hope that she will gain back her strength. We have been spending our days playing, learning, Shira is a real sponge. You don’t notice what she knows or doesn’t knows because expressing herself takes a lot of effort but then you ask her a question out of the blue and she gives you the answer or sings something on her own. She knows so much and can almost read. If you just sound out a word she’ll tell you all the letters. Shira loves to finger paint and do all sorts of art work. I am going to build a new repair shop in my basement for repairing musical instruments and making adaptable devices for Shira so that she can do more. We are looking forward to getting back on track with learning how to drive Shira’s power chair. Oh I forgot to mention that Help Fill A Dream approved us to build an accessible playground in our back yard with a special swing for Shira so she can play with Sam and other kids. We are really looking forward to some better weather so that can happen. Also, ChaiLifeline is sending Maxine and Sammy to Disney World in Florida in January on their way to visit Bubbe Ruth in Hollywood Florida. Maxine has a cousin with a little girl slightly older than Sammy that lives near Disney Land so they will get a chance to visit with them. Shira and I are going to start to run again and we’ll see how it goes. I have some foot problems these days due to many years of sports and I’m about 30 lbs over weight so hopefully some weight loss will take care of the foot problems. Shira and I want to try and run at least the half marathon next October again and beat our time of 2:22 but we will train for a full marathon in the hopes of doing that as a fundraiser. I have to thank everyone again for the love and support so many of you gave us while in the hospital. These life and death situations with our kids are gut wrenching and take an enormous amount of energy and concentration to get through. The love, prayers and contact make it a lot more easy to make it through the critical moments. Maxine, Sammy, Shira and I wish all of you a Happy, Healthy, Successful 2009!!!!!!

Sunday, November 16, 2008

An Update

It has been a while since I have done an update mostly because we haven’t had much help around here until recently so my time was limited. I have finally laid down the law with myself and started getting outside with Shira no matter what the weather is like. I have purchased a down mummy sleeping bag from Mountain Equipment Co Op which works fantastically for Shira and her equipment. I am able to run her food line and Oxymeter chord through the double zipper at the bottom of the bag. This allows me to put Shira in the bag and completely cover her from head to toe with nothing exposed thereby allowing us to venture out below 4 degrees Celsius. Last year I was putting Shira into a snow suit which sometimes would give me a nervous breakdown by the time I was finished getting her into it. It’s hard to put someone that can’t move their limbs into such a confining space. The sleeping bag just unzips and I lay her into it and zip it up and go. We also have really great rain screen protection for the stroller so we are set now and have been out every day rain or shine. Today we went on a 4 hour walk. During our walk we went through Mt. Doug Park a 400 acre park with a mountain a block from our house. While there we ran into lots of people with dogs and 5 people on horse back. Shira loves horses and dogs so it took us some time to get through the park. There is a 60 mile paved trail through Victoria called the Galloping Goose trail. Once through the park we took the trail through farm land, a sub division and finally to a strip mall and did a bit of shopping and picked up a video for Shira and then made our way home. Some days we go out in the pouring rain and Shira seems to really enjoy it. The rain can be a little challenging when suctioning Shira in her stroller but we are able to manage with only getting slightly wet.

It has been a while since I have done an update mostly because we haven’t had much help around here until recently so my time was limited. I have finally laid down the law with myself and started getting outside with Shira no matter what the weather is like. I have purchased a down mummy sleeping bag from Mountain Equipment Co Op which works fantastically for Shira and her equipment. I am able to run her food line and Oxymeter chord through the double zipper at the bottom of the bag. This allows me to put Shira in the bag and completely cover her from head to toe with nothing exposed thereby allowing us to venture out below 4 degrees Celsius. Last year I was putting Shira into a snow suit which sometimes would give me a nervous breakdown by the time I was finished getting her into it. It’s hard to put someone that can’t move their limbs into such a confining space. The sleeping bag just unzips and I lay her into it and zip it up and go. We also have really great rain screen protection for the stroller so we are set now and have been out every day rain or shine. Today we went on a 4 hour walk. During our walk we went through Mt. Doug Park a 400 acre park with a mountain a block from our house. While there we ran into lots of people with dogs and 5 people on horse back. Shira loves horses and dogs so it took us some time to get through the park. There is a 60 mile paved trail through Victoria called the Galloping Goose trail. Once through the park we took the trail through farm land, a sub division and finally to a strip mall and did a bit of shopping and picked up a video for Shira and then made our way home. Some days we go out in the pouring rain and Shira seems to really enjoy it. The rain can be a little challenging when suctioning Shira in her stroller but we are able to manage with only getting slightly wet.

The other big news in our life is that our Occupational Therapist has arranged and organized a preschool for both Shira and another younger girl with SMA Type 1 named Charlotte. The class is formal and takes place at the Queen Alexandra Rehab Hospital once a week. The class room is closed off and cleaned on a Friday and not re opened until the Tuesday of our class for our class. This is to ensure that the room is germ free. Shira is loving the classes and being around other people. Shira is so enthusiastic about learning. Shira is only 3 years and 5 months old but she knows her whole alphabet upper and lower case, can count to 20 and 10 in Hebrew, knows her Aleph Bet (Hebrew alphabet), prayers in Hebrew, and can spell if you sound out the word. Shira is a smart little girl and has a deep desire to learn. Shira is also extremely playful and loves to spend time playing dress up, do arts and crafts, play make believe with Sammy her brother and she loves sports. Shira loves baseball!!! I can’t wait for summer again so we can spend day after day at the baseball diamond. Anyways back to school. So at the school either Shira’s Occupational Therapist or her Physio Therapist are there to assist the Teacher. Shira loves his teacher Susan and is totally into the concept of school. With all my justifiable complaints about the antiquated conventional medical system I have to say that the school and arrangements made for germ control are really first rate. I have to give the credit to Susan our Occupational Therapist she has really done a fine job arranging all of this and really put something into place that has really increased Shira’s quality of life!!!

Tonight Maxine was out performing as an elf at a mall that was doing a fundraiser for children’s hospital so I was at home with Sammy and Shira. Sammy is so great with his sister giving her hugs and kisses and calling her sweety all on his own. Shira just loves Sam. Shira beams a brilliant smile when he kisses her. Sammy loves kung fu panda and we were on the web site and he explained the whole movie to Shira and who and what all the characters can do. It’s really beautiful to watch how gentle and loving he is to his sister. I’m very proud of my son! It’s amazing to watch how such a young boy can be so sensitive, understanding and aware of Shira’s needs. For many of you that haven’t met Shira she is very weak and for a reference point is extremely disabled. The only description of Shira’s care that makes any sense is Dr. Bach’s “Intensive Multidisciplinary Care.” 24/7 one on one care with eye contact. My son is so aware of how fragile she is. It just makes your heart break with the most expansive breadth of joy and the deepest darkest sadness all at the same time. I can hear Shira singing a Hebrew song in the room next to me over the monitor as I write this. Shira is on her BiPAP (Bi level Positive Airway Pressure) or non invasive ventilator so I can leave the room when she is on her Oxymeter which reads her vital signs and has an alarm should she crash and I can see her in our video monitor. Ok, Shira is about to sleep and then I will relax doing something mindless like watch t.v. Have a good week everyone and thank you for checking in!!

Friday, October 24, 2008

Everything Is Good

What's been going on? Not too much really which in the world of SMA is a good thing. Shira's health has been stable and she is developing cognitively in leaps 'and bounds. Shira is a joy! You really learn about how each of our souls far out weighs what we look like, what we own and what we do. It's an interesting study how we human beings get so sidetracked from what's important. We are watching a lot of baseball these day being that the world series is on t.v. Shira loves baseball. I have to watch because she wants to watch I am not a huge sports t.v. fan but she loves the action. We went to the Queen Alexandria Hospital the other day and had Shira fitted for a new pair of Ankle Foot Orthotics. Tomorrow our mobility specialist is coming to our home to look at the van and help us reconfigure it to carry both her manual and power chair. B'H Maxine, Sammy and I are all good!

Monday, October 6, 2008

Some People Have No Heart

Today Shira and I were downtown. While there I took Shira to our favorite local toy store. Shira wanted a bunch of barn yard animals so we chose a bunch. I had been in this store many times through the years and have always gone there first to support local business. I noticed at the cash register it said 25% off starting next week. I asked the cashier if we could have the discount because its hard for me to get downtown with Shira. She said no. I then told her that Shira has a terminal illness and I didn't understand why they couldn't make an exception considering there was a store wide sale the next week. There was also nobody else in the store. The clerk went into the back office which was open and we could here her ask the stores owner if we could have the discount. You could here the owner say, "no its against company policy." The clerk returned to the counter and informed me that it was against company policy. So, I let her ring up the itemes, run them through on my credit card and then I informed her that I decided I didn't want the items. Now I can understand not getting 25% off if I was just asking for it but in this case there was a sale next week. a sign on the check out counter and i informed them that it was difficult for me to get downtown with my daughter who suffers from a life threatening illness and they just said no! I will never shop there again and I will spread the word. The heartless store is called Kaboodies located at 1320 Government Street, Victoria, B.C. Canada phone: 250-383-0931 Please spread the word that this is a heartless business person. I ask that everyone boycott this store this Christmas season and hopefully forever!! Please spread the word. I'm pissed!!!!!!!!

Monday, September 29, 2008

Rosh Hashanah

Just a quick post. Maxine made us a beautiful dinner tonight for our Rosh Hashanah celebration (Jewish New Year). Sammy and Maxine baked beautiful Challah and I made the Rugalach. We didn't have anyone over or invite any families because it just gets too complicated when someone is sick and then the whole family can't come so we just do our own thing. Shira is getting to really know the Bracha's (prayers) and Sammy likes to teach her what she doesn't know. Sammy wolfed down challah with honey, rugalach with honey, apple with honey. He is a beautiful loving brother to Shira. Maxine is so amazing preparing the meal tonight everything from scratch while setting up interviews to find some more staff to work with Shira. Everyone is good and healthy and all in all we are starting off our new year in a positive, loving, beautiful family way.

Friday, September 19, 2008

Have A Good Weekend And A Good Shabbos

It's been a good week. Sammy is in his second week of grade 1 and loving it! Sammy starts soccer this weekend. He actually asked to play in a certain league because his friends are playing in it. What a guy. This week the kids next door made a little zip line they were playing with in their garden and they wouldn't let Sammy play so I took Sammy to Home Depot where we purchased 50 feet of rope, a pulley and doweling to make our own zip line. I strung the line from the porch to a tree 25 feet away. Well the kids wanted to come over and play in our yard where Sammy was king (the little buggers). Now we always have kids in our yard flying across the yard. Yesterday they were zipping over the yard and landing on the upside down blow up pool. Maxine made another beautiful challah. Nothing like home made challah cooking in your home. Maxine is so beautiful and amazing to us. She really keeps everything running while i'm concentrating on Shira. She keeps Sammy's life 'Normal.'

Shira almost has the entire Hebrew Alphabet down. At the moment Shira knows the entire english alphabet in any order and numbers up to 20 in any order read off of flash cards. I'm working on reading and its coming as well as addition. Physically Shira is doing great. Her physio sessions 2 times a day I think help her a lot. We are using our standar more all the time and still working on power chair driving skills.

That's about it from our end. We are all healthy as we head into the dreaded flu season. Last year I only spent 4 weeks seperated from Maxine and Sam and I pray that this year will be less. The year before last I spent 7 weeks downstairs quarantined but Shira hasn't had a major illness since her RSV hospitalization when she was 6 months old. Keeping my fingers crossed and I just knocked myself in the head.

Oh yeah. Shira and I got a chance to watch some good baseball last week. Boys about 15 years old. Pretty good ball but the boys aren't all that coordinated at that age but you can really see the talent emerging. Whenever we go to these games we always seem to clear an entire bleacher of seats once we get suctioning etc. I have a microphone and speaker for Shira so she can yell obscenities at the umpire.

If you are looking for something good to read check out Zora Neale Hurston; absolutely amazing writer!!

Have a good weekend and shabbos. Brad

Sunday, September 14, 2008


Breath in.
Breath out.

When running from the unknown takes the place of stepping into the abyss

Breath in.
Breath out.

When avoiding the sick takes the place of reaching out

Breath in.
Breath out.

When indifference takes the place of compassion

Breath in.
Breath out.

When fear takes the place of love

Breath in.
Breath out.

When dogma takes the place of the devine

Breath in.
Breath out.

When war takes the place of peace

Breath in.
Breath out.

When revenge takes the place of action

Breath in.
Breath out.

When a child is shunned takes the place of inclusion

Breath in.
Breath out.

Breath in.
Breath out.

Breath in suffering.
Breath out compassion.

By Brad Fisher

Thursday, September 11, 2008

Dr. Schroth. One of Our Heroes!!!

Along with Dr. John Bach of UMDNJ and Dr. Swoboda of U of Utah Dr. Schorth of the U of W at Madison is a wonderful Dr. and person. You can't be in better hands when you have Dr. Schroth looking after you.

Friday, September 5, 2008

Our darling baby

with blue eyes

with golden hair

with ivory skin

with your scent

You may not move,

Like other kids do,

So we will be your arms and legs.

You may not speak,

A typical language.

But we understand every word you say.

At night

I stand over you.

Patting your back,

Rocking you to sleep.

In my selfishness I want you to awake.

In my selfishness I want to play with you more.

In my selfishness I want to hear you say you love me,

One more time.

We're tired.

Exhausted from loss,

Bitter of people.

We're tired from fighting with others,

Convincing THEM life is sacred

And you are worth

What it takes

To keep you


People move slowly

To deliver the things you need

But time moves ferociously

Eroding our life together

Shut up!

You've got what you want

Go away.

But we will not

Go Away!

We have learned,

Life is sacred!

-by Brad Fisher (Father to Shira, SMA Type 1, 3 years old)

Wednesday, September 3, 2008

Our Boy Started Grade 1

Boy does time fly!! Sammy started grade one this week. We are so proud of Sammy. Sammy spent all summer in different camps and really enjoyed himself. Sammy is a little man these days. He keeps himself busy doing a lot of dress-up, performing his own shows for us and Shira and playing with kids in the neighborhood. He is so good with Shira it just breaks your heart to watch how gentle and loving he is with her. Sam understands Shira so well they are really best of friends. Shira lights up when Sam dots on her. So, here are a couple of photos from this week. Our help situation is really bad at the moment but we refuse to settle for anything less than a dedicated person that really wants to do this kind of work and isn't settling.

Saturday, August 30, 2008

Our Friend Sophia Doebbert

Here is a video about our friend Sophia Doebbert and her family. They have helped support us tremendously since Shira's diagnosis. Enjoy!

Thursday, August 28, 2008

Here is an interesting quote about discovery I found enlighteneing. I have been told so many times that some of the therapies I want to use on my daughter are old or old therapies being used again as if that should disuade me from using something that is affective. Dr.'s are funny!! May we pray to g-d that he give our good doctors wisdom!! I hope everyone is having a good week and enjoying life.

'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.

I've also been reading something other than medical books lately. I don't know if you have ever heard of Zora Neale Hurston
but what a writer. She was an anthropologist as well, a real amazing person. Some of her writing is poetic, earthy. Here's an outtake of a short story. Enjoy!
Shira is doing great. Sammy is in his last Summer Day Camp and will be starting grade 1 shortly. We are so proud of Sammy, what a loving brother to his sister!

The weather here has changed and I have so much yard work. Oh well, can only do so much. Maybe I should buy some goats? Hmmmmm.

Magnolia Flower

The brook laughed and sang. When it encountered hard places in its bed, it hurled its water in sparkling figures up into the moonlight.

It sang louder, louder; danced faster, faster with a coquettish splash! at the vegetation on its banks.

At last it danced boisterously into the bosom of the St. John's, upsetting the whispering hyacinths who shivered and blushed, drunk with delight of moon kisses.

The Mighty One turned peevishly in his bed and washed the feet of the Palmetto palms so violently that they awoke and began again the gossip they had left off when the Wind went to bed. A palm cannot speak without wind. The river had startled it also, for the winds sleep on the bosom of waters.

The palms murmured noisely of seasons and centuries, mating and birth and the transplanting of life. Nature knows nothing of death.

The river spoke to the brook.

'Why, O Young Water, do you hurry and hurl yourself so riotously about with your chatter and song? You disturb my sleep.'

'Because, O Venerable One, ' replied the brook, 'I am young. The flowers bloom, the trees and wind say beautiful things to me; there are lovers beneath the orange trees on my banks, -but most of all because the moon shines upon me with a full face.'

Sunday, August 24, 2008

Living With SMA

Dealing with the public and living with SMA is enough to make you loose your mind. We had another person quit working us recently to take on another job that would be better for her career. I don't have problems with people wanting to follow their dreams but I do get upset when they are dishonest and only use us. One of the questions we ask potential employees is, have you applied for any other positions? and if you have and you are hired for that position would you accept it over our position? We have had several employees leave us after answering that they have looked for other work but this is the position they want. We even go so far to inform the potential employee that this is a family you are working with and that we have a daughter with a terminal genetic disorder. We bring to their attention that we rely heavily on them to ease some of the demands for caring for a child like Shira and that this is not the place to take advantage of someone. If you want to take advantage of an employer to make money until your dream job comes along please do so at Starbucks or a company that can deal with high turn over and that is a less important job. People look you right in the eye and insure you that they are honest and that they would never do such a thing. Then, weeks later after lots of effort and training they tell you they got a call back from a job that they really wanted. We are seriously being tested here. Our level of patients for dealing with mediocrities has been taken to an extreme level.

I have to honestly say that the only people that really understand exactly what we are going through are people that are disabled, parents and caregivers of the disabled, or other people faced with or have been faced with life threatening illness. I've had a family member even tell me once after I suggested a video for them to watch on SMA that, "I'm not interested, it doesn't affect my life." I've had other's suggest that we should have no complaints as we made our own choice to care for someone this disabled when we also had the choice just to let her die. I have realized that though I live in the west, in a democratic society that there is still a mob mentality and that there is a lack of caring and positive attitude when it comes to quality of life issues and the disabled. We have people in positions of power controlling and pushing their belief systems on people that do not have the ability to affect immediate change to their direct circumstances and that they are forced to let their children or family members die based on powerful peoples opinions.

So, today people mostly suck! Again, we have found that we have experienced a great outpouring of love and support from where we least expect it and the least from where we most expect it. People often ask, "then what do you want, what do you need?

We have come to realize that when you mention support the first thing people think is, "they want money!" If you ever want to get rid of anyone really quickly out of your life just be bold and ask them to give you money, you can be assured you won't hear from them again. When I say support, what I am talking about is emotional support. Everyone gets on their computer every day and just an email or a quick phone call to let families know you are there is enough. Of course physical help can also be very helpful.

So this is a call to you. Pick up the phone or send an email to someone you know that needs it and keep on doing it. I know that from my work experience I could call 50 people in 2 hours. I did this almost every day to generate leads. Many leads became customers, many leads introduced me to customers and some leads became friends, some leads become customers and friends and remain friends. Its funny how many people can make phone calls for money but they find it extremely difficult to call people that need to be supported. One is fake, make believe, acting while giving someone support is the real you. All I can say is is that if you are not supportive to those you know it is a reflection on you. Think about it. Everyone knows someone who is old, fragile, sick, or grieving. If you are close to these people in good times but aren't there just to listen in times of bad how does that look? Those people you do that to will know you are not friends, and that in reality, you are only shallow acquaintances.

I had an epiphany the other day. There are so many problems in our medical and social systems regarding the care of the elderly and children. The problem is no one cares and no one is being supportive of these adults and children. The viscous cycle of lack of love and support is taking place under the roof of these care facilities and it is a mirror of our society as a whole. It used to be that the elderly were held in high esteem and respected as people of knowledge while the young were depicted as our nations future, but our corporate minds have been branded through extreme marketing to measure ones worth by wealth alone. Unfortunately, chivalry, gallantry, and the lessons of King Arthur and his noble knights have been lost to the status quo, conventional wisdom, logo and instant gratification by the acquisition of empty material objects.

Have a nice day :)

Monday, August 18, 2008

Discovery Of Life

Discovery of life

Gentlemen! Today is the first time that I realize the presence of life! Gentlemen! I beg you to leave me alone for a moment, so I can savor this formidable, spontaneous and recent life emotion, which today, for the first time, enraptures me and makes me happy to the point of tears.

My joy come from what is unexperienced of my emotion. My exultation comes from the fact that before I did not feel the presence of life. I have never felt it. If anyone says that I have felt it he is lying. He is lying and his lie hurts me to such a degree that it would make me miserable. My joy comes from my faith in this personal discovery of life, and no one can go against this faith. IF anyone would try, his tongue would fall out, his bones would fall out and he would risk picking up others, not his own, to keep himself standing before my eyes.

Never, except now, has life existed. Never, except now, have people walked by. Never, except now, have there been houses and avenues, air and horizons. If my friend Peyriet came over right now, I would tell him that I do not know him and that we must begin anew.
When, in fact, have I met my friend Peyriet? Today would be the first time we became acquainted. I would tell him to go away and come back and drop in on me, as if he did not know me, that is, for the first time.

Now I do not know anyone or anything. I notice I am in a strange country where everything acquires a Nativity relief, a light of unfading epiphany. No, sir. Do not speak to that gentleman. You do not know him and such unexpected chatter would surprise him. Do not put your foot on that tiny stone: who knows it is not a stone and you will plunge into empty space. Be cautious, for we are in a totally unknown world.
What a short time I have lived! My birth is so recent, there is no unit of measure to count my age. I have just been born! I have not even lived yet! Gentlemen: I am so tiny, the day hardly fits inside me.

Never, except now, did I hear the racket of the carts, that carry stone for a great construction on boulevard Haussmann. Never, except now, did I advance parallel to the spring, saying to it: 'If death had been something else....' Never, except now, did I see the golden light of the sun on the cupolas of Sacre-Coeur. Never, except now, did a child approach me and look at me deeply with his mouth. Never, except now, did I know a door existed, and another door and the cordial song of the distances.
Let me alone! LIfe has now struck me in all my death.

---Cesar Vallejo

Weak Type 1 Or Just Incompetent Doctoring Again and Again

This story below showed up on my google alert. My heart and prayers go out to the parents. Judging by the article it sounds like another case of bad doctoring as the article does not mention the doctors giving the parents any choices i.e The NIV PRotocol of Dr. Bach, Tracheostomy etc. Most of the time kids die untimely deaths because of misinformed, conventional Dr.'s that can't get past their own egos of not knowing what to do. Unfortunately because these doctors do not have the will to just get on the computer and look at the or site and look at the links page and contact doctors with lots of direct experience caring for SMA Children in the U.S. the kids die untimely deaths because the doctors are plainly "Egotistical Jackasses." I have to add that i HOPE the doctors did give this family choices but I highly doubt it.

Baby's death: parents want to advise others
17 August 2008, 13:43
Click Here
By Noelene Barbeau

A young Durban couple's new- born son died recently from spinal muscular atrophy, a motor neuron disease.

In his memory, they want to create more awareness of this disease and help fundraise for expensive equipment that many families cannot afford to buy their children.

Spinal muscular atrophy (SMA) affects the voluntary muscles used for activities such as crawling, walking, head and neck control and swallowing.

Lavon Chetty was just 56 days old when he died. His parents, Dean and Terene Chetty, of Parlock, were thrilled to welcome him into the world on June 1.

However, a week later, after a series of tests, they learnt he had SMA type zero, a new classification of the disease and apparently the worst. At present, there is no cure for SMA.

'The day we found out, we came home and started doing some research on the Internet. We had never heard of such a disease and the internet just listed three types of SMA.

'SMA zero is when a baby has the disease from birth. At first Lavon could move his fingers, hands and legs, but slowly this stopped. From the time he was born he couldn't breathe without the ventilator. He also had to have a drip and a tube placed through his nose that went to his stomach,' said the grieving dad.

'He was a very alert child. He would smile when we spoke to him and would frown or cry if something was hurting, but his eyes told you his story. We had a short time with him, but we formed a close bond. The nurses were also very fond of him. They really went the extra mile for Lavon,' said Terene.

They were regulars at the neonatal ICU ward at St Augustine's Hospital and had a team of doctors to help. Forming part of the team was Prof John Rodda, a paediatrics neurologist from Johannesburg.

He said SMA affected children across all race groups and was the most common neuromuscular disorder in children.

'Regarding testing for SMA, it won't be detected in women who are pregnant for the first time, unless there's a family history of SMA,' he said.

'Antenatal testing can be done if the couple suspect their unborn child could have SMA.

'A child's blood can also be tested if his or her parents think he or she might have it.'

Terene was not tested for SMA while she was pregnant with Lavon because neither Dean nor Terene's family had a history of SMA.

But knowing what she does now about SMA, Terene feels every pregnant woman should be tested for it at their first eight-week check-up and from there make an informed decision if SMA is detected.

The couple said they had known a few days before Lavon's death that he was going to die.

'We had to plan a funeral for him before he died. That was the hardest part,' said Dean.

The Chettys searched the internet for a local website that could help them speak to parents who had been in a similar situation.

They found the Leah Reilly Foundation and met Cara Reilly, whose daughter Leah died a year ago when she was 19 months old. Leah was diagnosed with SMA type 1.

The Reillys also found a lack of support in South Africa, which led to Reilly establishing the foundation.

Reilly said local statistics were not available and she was aware of only eight South African cases.

At a recent fundraiser, University of Witswatersrand lecturer Diane Manning said she would include SMA studies in the medical syllabus from 2009.

Friday, August 15, 2008

Yay Lizzy. We are so proud of you, your mom, grandma and grandpa!!

Elizabeth is beating the odds

By Peg Reynolds, Staff Reporter
Published: Friday, August 15, 2008 1:28 PM CDT
E-mail this story | Print this page
Pontiac Fire Department will “Fill the Boot” again this weekend to help Jerry’s Kids who are afflicted with muscular dystrophy. The firemen will be accepting donations between 10 a.m. and 1 p.m. Saturday at Pontiac Wal-Mart and Sunday at Big R. With the firemen is Elizabeth Hallam, of Pontiac, the Goodwill Ambassador for the MDA for Central Illinois. She suffers from spinal muscular atrophy type 1. Firemen from left are Scott Runyon, Todd Gould, Andy Vitzthum and Jace Weaver. (Photo provided)

There is a 4 1/2-year-old Pontiac girl who is surpassing a doctor’s prognosis of not celebrating her second birthday.

Elizabeth Lee Hallam, born Sept. 29, 2003, was diagnosed with SMA (spinal muscular atrophy) type 1 on May 11, 2004. Her parents, Christen Huette and Brandon Hallam, learned that this was the number one genetic killer of children under the age of two.

SMA is a group of inherited and sometimes fatal diseases that destroys the nerves controlling voluntary movement. This affects crawling, walking, head and neck control and even swallowing.

Two months after Elizabeth was diagnosed, she was placed in a clinical study at Stanford, Calif. The study is funded by MDA, but the cost of the trip, their lodging and Elizabeth’s medication, which costs between $200 and $300 a month, are not. The mother and daughter must travel to the California hospital every four months for follow-ups.

“It’s hard to get the money, but we do it for Lizzy,” Huette said.

They discovered early in the study that Elizabeth was not on a placebo, but was taking the medication hydrozyurea, which was developed by Dr. Ching Wang.

“Her movement increased after taking the medication for two weeks,” said her mother. “When she was first diagnosed, she didn’t move the bottom part of her body at all. She was moving her legs, starting to bend her legs while laying flat on the floor, and she looked like she had more energy.”

Elizabeth started to lose her ability to swallow after a case of strep throat soon after their first trip to Stanford.

“She got really ill and would gag when eating or refused to eat at all. Our doctor's nurse told me, ‘There is nothing more doctor can do for Elizabeth.’ Their opinions have since changed because of how well Elizabeth has been doing for the past three years.”

A nissen/g-tube saved Elizabeth's life, her mother said. A swallow study had showed Elizabeth was silently aspirating on liquids.

Elizabeth requires around-the-clock care, which is shared between family members. She has physical therapy once a week

Huette said she owns a van, but it does not have a wheelchair lift. A ramp was built at their Pontiac home by RAMP. She is inquiring into a home school video conferencing live feed, which is funded by a foundation. Her daughter can not mix daily with other school-age children, as a simple illness would land Elizabeth in the hospital for two weeks, or worse.

Huette said her parents, Herb and Jeanne Huette, have helped her and Elizabeth through their trials, as have the other members of the family.

Huette also praises the efforts of Senator Barack Obama and State Sen. Dan Rutherford, R-Chenoa, who have both come to her rescue when she battles “red tape.” “I have them both on speed-dial,” she said.

The Pontiac Fire Department is another group that is helping Elizabeth fight her battle. They will conduct their second and third “Fill the Boot Drive” this weekend. On Saturday they will be at Wal-Mart from 10 a.m. to 1 p.m. Sunday’s collections will be at Big R from 10 a.m. to 1 p.m. Monetary donations collected for the MDA drive will stay in this area, a press release said.

Wednesday, August 13, 2008

A Wonderful Playdate

This weekend Shira had a very special treat. While Sammy has had several play dates at home Shira had a special visit by 2 new friends Tete and Helena and their mother Marie. Shira had so much fun!! Because we keep Shira away from sick people, exposure to crowds in enclosed places etc. it limits the kinds of things Shira can do as well as her contact with others. But the day was special and Shira had the best time and the girls were so attentive to Shira. The girls spent alot of time playing beside Shira so Shira could watch and take part in everything they were doing. We look forward to our next play date. Shira had so much fun she cried when the play date was finished. We are so happy for Shira that she has found some new friends.

Sunday, August 10, 2008

SMA International Remembrancen Day

Last night was international SMA remembrance day. The day always makes us a little anxious because it is a day filled with hope for a cure and knowing with the right therapies our daughter will not die an untimely death. The day also reminds us of all the kids that have been lost to this terrible disorder. We have had very close friends loose their children and it only serves to remind us of Shira's mortality and the reality of this terrible disorder. We pray for a cure or a miracle. Prayers to all the angels in heaven and all the parents that have lost these angels. Look down on our Shira and keep her and all the other's here healthy until we find a cure!! We are thinking of all of you tonight and always.

Friday, August 8, 2008

Hi everyone. Things have been good here. Everyone is healthy. I have added a couple of new photos. Thanks to everyone who checks in and is thinking about Shira and us! We greatly appreciate the support. Maxine baked Challah for the first time today.

Wednesday, August 6, 2008

B.C.'s 150th Birthday, Iguanas and The Second Brain

The weekend was better than usual. We all took in our provinces 150 year birthday celebration. On Saturday we stood in front of our parliament building and listened to our Prime Minister Stephen Harper deliver a speech. Gordon Campbell the premier of B.C. was also there. Unfortunately Shira totally melts down and her vital signs crash when people clap and cheer; she absolutely hates it. So we didn’t get to see the concert which had among others Cold Play and Sara McLaughlin. During Cold Plays set we walked around the inner harbour with about 50,000 other people and the Canadian Air force’s Snow Birds doing manoeuvres overhead. Sam of course was blown away with all those jets flying in formation over head and so close to all the buildings. It was loud and thunderous. Shira didn’t really know what to make of the whole scene because we do live quite a solitary life so that she doesn’t get sick. While we were at the event Shira of course got to pat many dogs and an iguana. Shira has a plastic iguana at home that she loves to play with so when she got a chance to touch a real one it really made her day.

Today (Wed) Shira, Maxine and I walked around a golf course that has a trail and duck ponds. It was really hot out and the walk turned into more of a sweaty work out pushing her stroller over a bark mulch path; All in all a really nice day.

On another medical rant I came across something in a book I have been reading called “The Second Brain” by D. Gershon, M.D. The premise of the book is about how the stomach is not controlled by the brain and how it functions with and without the brain controlling it. I found the premise interesting because Shira’s brain isn’t able to send its signals throughout her body and so I’m hoping there will be some clues within the book that might lead me to some ideas as to how I can improve Shira’s diet etc. Since Shira is missing certain cells that the brain uses to send signals to muscles I thought the book would also shed light on how Shira’s digestive system is still able to work to such a high degree.

But what I really want to talk about is something Dr. Gershon sheds light on at the very beginning of the book. When I wanted Shira to start using the cough assist Dr.’s were literally trying to talk me out of it saying its unproven, there’s no empirical evidence and that the machine is an old idea brought back. Here is what Dr. Gershon has to say about old ideas.

“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.”

It’s comforting to know that somewhere in the world there are real scientists with open minds thinking about truly helping people even if it means using someone elses old ideas in a new way.

On another note, apparently Sam told his councillor at sports camp today that he reminded him of Dave a councillor from Sponge Bob Camp except that he had a different face. I just love kids!!!!!

Keep up the good fight everyone.

Sunday, August 3, 2008

A Weird Day-Pain And Suffering Abroad

Today was a weird day. We just couldn't get it together. The energy all around us was off. Have you ever had that feeling that you just weren't in step with your surroundings? We had good intentions. After waking and going through the morning routine of waking up, Chest Physio therapy and just getting out the door which can take 2 hours we drove down the road to a farm near our home. The place just had a bad feeling. The animals were behind fences (some petting zoo) and it just drove Shira nuts. When Shira cries she chokes and too much crying just leads to desating (vital signs start to go down because of all the choking). I guess i'm really tense because I read a letter from one of our doctors last year that said, 'Shira is doing well as she must be a stronger Phenotype.' You can read what that is here
You know, when Shira was first born the neurologist looked at her and told us she was so weak she probably wouldn't live a year. Now that Shira is 3 she is considered stronger. None of the medical professionals really discuss the care she gets and the effectiveness of Dr. Bach's NIV Protocol because he is an unproven quack.

All us SMA parents hear the same thing 1) your child is so weak take them home and love them until they die 2) No you can't put your child on the AA diet its unproven 3) No you can't use the cough assist your child is too young, too weak, you'll give her a pneumothorax (blow out her lung) 4) There's nothing you can do for your child and on and on.

I just get so pissed off when another parent phones or writes me from another part of the world and I hear the same BS come out of the mouthes of these doctors with absolutely no experience in the care of SMA patients through the patients life. And the poor parents see all of us with our older kids and they scratch their heads because if they apply what they are being told and then look at us you start thinking that someone is not telling the truth.

I know how hard it is to fight against a system that is supposed to be helping you. A system that runs on conventional wisdom with all research carried out behind closed doors until a cure is found. We don't here about what happens to all the patients that are tested on we only here about successes.

Then what about the patients that suffer from serious stuff life Shira where they are actually missing genes. Cancer can be cured and you can live with it for a long time because you are a whole person with the added cancer. I'm not downplaying the terror and everything else cancer brings including death but you have a chance of being cured or and going into remission. I'm no fool and I see SMA patients dying left and right, there is no cure and life expectancy is short. The problem i have is that the medical system doesn't like this sort of patient. The medical system likes the patients where they have a chance to live. You hear about how effortlessly and quickly the medical system here responds to cancer patients. I rarely see a cancer patient in the news advocating for their life but I see parents with children with disabilities or families with geriatric parents in the paper advocating all the time.

What is this? Are we only survivalists? Do we only care about winning and not just playing the game anymore. I guess we are only a country of winners and to be a winner you have to be rich its still not ok to be Joe Shmoe and be a winner you have to be a movie star, rock star, business tycoon, habitual bank robber on CNN, and you have to be rich or famous!!! And when you are famous you get service even if you are a real bad but famous criminal, you get quick and effective medical care should you need it.

Now i'm not saying that we don't have what we need now because we do but I relive the terror of loosing my child every time a newly diagnosed family calls me for help wondering how I got what I have for Shira.

I've decided to post the Hippocratic Oath both the old and new maybe if you are having trouble with your doctor you can give him a copy.

Hippocratic Oath -- Classical Version

I swear by Apollo Physician and Asclepius and Hygieia and Panaceia and all the gods and goddesses, making them my witnesses, that I will fulfil according to my ability and judgment this oath and this covenant:

To hold him who has taught me this art as equal to my parents and to live my life in partnership with him, and if he is in need of money to give him a share of mine, and to regard his offspring as equal to my brothers in male lineage and to teach them this art - if they desire to learn it - without fee and covenant; to give a share of precepts and oral instruction and all the other learning to my sons and to the sons of him who has instructed me and to pupils who have signed the covenant and have taken an oath according to the medical law, but no one else.

I will apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice.

I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect. Similarly I will not give to a woman an abortive remedy. In purity and holiness I will guard my life and my art.

I will not use the knife, not even on sufferers from stone, but will withdraw in favor of such men as are engaged in this work.

Whatever houses I may visit, I will come for the benefit of the sick, remaining free of all intentional injustice, of all mischief and in particular of sexual relations with both female and male persons, be they free or slaves.

What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself, holding such things shameful to be spoken about.

If I fulfill this oath and do not violate it, may it be granted to me to enjoy life and art, being honored with fame among all men for all time to come; if I transgress it and swear falsely, may the opposite of all this be my lot.

Translation from the Greek by Ludwig Edelstein. From The Hippocratic Oath: Text, Translation, and Interpretation, by Ludwig Edelstein. Baltimore: Johns Hopkins Press, 1943.

Hippocratic Oath—Modern Version

I swear to fulfill, to the best of my ability and judgment, this covenant:

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and
understanding may outweigh the surgeon's knife or the chemist's drug.

I will not be ashamed to say 'I know not,' nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these
related problems, if I am to care adequately for the sick.

I will prevent disease whenever I can, for prevention is preferable to cure.

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with
affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.

Written in 1964 by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University, and used in many medical schools today.

Saturday, August 2, 2008

Our City's Birthday, Firetrucks And Scary Old Ladies

Another beautiful day in Victoria. We didn't think we would get out today because Maxine is still battling something that we think is strep throat. This weekend is the 150th birthday of Victoria and a long weekend here so there are lots of events taking place in our city. We went downtown and walked along the waterfront and watched a parade of over 50 firetrucks from all over the North West. The firetrucks ranged in age from the early 1800's right up to the newest trucks. Shira loves fire trucks because of Elmo's video Elmo visits the firehouse. We have also had the fire department here a couple of times as they respond to respiratory arrest calls (sigh).

On another weird note one of my pet peeves that has been bothering me is that where ever we go people see Shira and automatically assume she's sleeping because she is laying down. A couple of very old woman walked past us today saying, 'Oh look at her she's dead to the world.' My heart just sank. I know that they didn't mean any harm by what they were saying but in my head I was thinking, 'you don't know the half of it.'

Nobody really understands exactly what Maxine and I do with Shira. Most people just think Shira is sick and that's it they don't realize we actually keep her alive by the Intensive Care we give her throughout the day. No matter how many times you explain it to some people they just don't realize that you can't leave these kids alone un monitored.

I know that some people think we are over reacting with Shira. They know she is really sick and supposedly has a terminal illness because she is so happy when they see her they don't realize we are giving her hands on 24 hour intensive multi disciplinary care to keep her looking so cheery, happy and freakn' alive!!!!!!!!!!!!!!!!!

The day was good except for the usual freaky human contact I so dread when I go out into world. People mostly suck and really are totally indifferent uncaring, and more interested in themselves than anything else.

Anyways, B'H Shira is well, happy, here and if I had to cut both arms and legs off to keep her here I would in a second.

Tomorrow is supposed to be nice weather as well so we will carry on with our weekend celebrations of our wonderful city. Sam had a blast today and Maxine was a trooper for getting out of the house for a while to help relieve my cabin fever. Keep up the good fight everyone.

Friday, August 1, 2008

A Beautiful Fresh Rainy And Now Clear Baseball Ready Day

Just a quick note. The last couple of days have been really good. It finally rained here, yay!! It's absolutely beautiful out which is great because there is a baseball tournament not far from our home. Shira loves her baseball so we will be doing that a lot this weekend. No other news to report really. Shira's health is good, Maxine is still under the weather but has started on a round of antibiotics. We think Maxine has caught Sam's strep throat from a couple of weeks back. No news is good news in the SMA world. Keep up the good fight.

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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