Monday, September 29, 2008
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
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
When running from the unknown takes the place of stepping into the abyss
When avoiding the sick takes the place of reaching out
When indifference takes the place of compassion
When fear takes the place of love
When dogma takes the place of the devine
When war takes the place of peace
When revenge takes the place of action
When a child is shunned takes the place of inclusion
Breath in suffering.
Breath out compassion.
By Brad Fisher
Thursday, September 11, 2008
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.
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.
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
You've got what you want
But we will not
We have learned,
Life is sacred!
-by Brad Fisher (Father to Shira, SMA Type 1, 3 years old)
Wednesday, September 3, 2008
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.