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.