Bye Bye Birds

Hi Friends,
As we mentioned before that at our door steps on the column we have a nest with Birds. Two baby's just flew away the other day.They stood on the edge of the nest and Eva was ,so scared that they will hurt them self's. Ready to come to their rescue she watched carefully. I ask her why did mama-bird made 2 nests one across of each other on the other column? Why was it empty?
Eva said -Mom ,Hello?! Its their summer home,don't you get it?!
Every time ,I leave our home I look at empty nest and wonder how similar our life is to birds,just like them we feed our kids and care for them till they are ready to spread their wings on there own.
Will they come back next year? We hope ,so .Even know that we had to clean messy floors below the nest ,it was beautiful .
Sammy have completely changed from day to night.Day time he gets more medications and that is why he sleeps during the day. We are the ones who must work around his schedule .I get to sleep ones in the few nights uninterrupted. But who is talking about us?
Sammy is definitely had declined again it barely noticeable ,but I know .
He love spending time in the Family room in the evening .His bath time I try to increase as much as I can,he is truly enjoying water.
Eva is leaving on short vacation with grandma tomorrow. It will be very quite ,I know we already missing her.
XOXO Sammy and Mom

See it,deal with it,move on....

Hi All,
Just came across of an expression ' emotionally not available' -Ha, that is exactly how I feel !
Numb.
Trying to get my physical strength back , I went back to physical therapy,so is several members of our family. Sammy is getting bigger he is very tall / 5 feet/ and 100 IB.
As he growing bigger ,I fear that I'm not able to handle his weight by my self .
Tonight Sammy was sleeping with us,thunder and loud noise is scary.He did not sleep most of the night ,I was able to see closely over night that he has increased seizures .We will have to adjust his medications right away, I just wanted to keep him comfortable.
I have pleasure to meet many ALD families that is going through same tragedy of loosing a child as we are.Place that you never want to visit.
Some had lost their boys ,some still have a hope to save their life.
I know all of this families are very strong-you have to be! Weakness is not permitted-
its the worst possible quality you can have any way. I am a fighter -always has been ,always will be that is why I think I like boxing for my exercise ! I swear ,some of my ancestors must have been pro fighters.... You can probably sense that something is cooking ,it never a damn moment.I had to come up with a certain mo do:
-See it, deal with it ,move on.....
XOXO Sammy and Mom

Chance

Hi Friends,
Yesterday we had a pleasure to hear Sammy's voice.For the first time in 3 years.
His voice got ,so much deeper .We heard him laughing not just smiling.
I don't know ,if we cry because we heard him ,or because it was so sad?!
Our angel is having more stiffness problems and seizures seems more random and frequent.
We take turns /literally / to dive in depression when I'm OK, Alex is down.
It takes every living cell to push my self and keep going.Other stress seem ,so pitiful .
Every days commotion and minor incidents is nothing next to this few past days.
Some how there is silent feeling of Sammy leaving us in one point,but no one will admit it of course we still believe in miracle.May be ,Sammy has better c chance for a miracle as long as we believe in it,so we do.
XOXO Sammy and Mom

Focus

Hi All.
Not much to say.
Just had difficult time to face reality,the fact that Sammy had another big decline is real.
It takes a long time to justify and assess the future . Its clear that Sammy's lungs are not 100%.
Will it ever be? His movement and responses are weak , it seems that he is in a cloud.
Last night I took him in to my bed,he slept most of the day I knew that he would be up all night and scared being alone in his room. Instead we stayed up late and he felt safe.
Early in the morning I give him long bath, face mask ,exfoliator ,nail buffs, hair -the spa !
He enjoyed every moment making happy sounds-it makes my day even know I have to work today.
I learned how to move on in many situations,overlooking small things-it helps me get things done and as long as I achieve desirable end result I'm happy.Focus on the big picture -end result is my task -leave everything else behind. Don't let anything or anyone to slow you down,
brush it off -let it go.
Interesting enough ,there are many heartless people that I have to deal with,who would lie,
try to make my life difficult the only thing they don't understand is that - Nothing can hurt me anymore - I am numb.
I wish every one of our friends and family have a great summer, even know this cotton trees driving me crazy-so much fuzz-Yak!

XOXO Sammy and Mom