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!

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 www.kaboodies.ca 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!!!!!!!!

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.

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

Breathing

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

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.



http://www.madison.com/tct/news/CTstaging/303127

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

alive!

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)