Sally jumped up as soon as she saw the surgeon come out of the
operating room. She said: "How is my little boy? Is he going to be
all right? When can I see him?"

The surgeon said, "I'm sorry. We did all we could but your boy
didn't make it." Sally siad' "Why do little children get cancer?
Doesn't God care any more?" "Where were you, God, when my son needed
you?"

The surgeon asked, "would you like some time alone with your son?
one of the nurses will be out in a few minutes, before he's
transported to the univeristy." Sally asked the nurse to stay with
her while she said good-bye to her son. She ran her fingers
lovingly through his thick black curly hair. "Would you like a lock
of his hair?" the nurse asked. Sally nodded yes. The nurse cut a
lock of the boy's hair, put it in a plastic bag and handed it to
Sally. The mother said, "It's was jimmy's idea to donate his body
to the university for study. he said it might help somebody
else. "I said no at first, but Jimmy said, "Mom, I won't be using
it after I die. MAybe it will help some other little boy spoend one
more day with his mom." She went on, "My Jimmy had a heart of gold.
Always thinking of someone else. Always wanting to help others if
he could."
Sally walked out of Children's Mercy Hospital for the last ime after
spending most of the last six months there. she put the bag with
Jimmy's belongings on the seat besides her in the car. the drive
home was difficult.

It was even harder to enter the empty house. she carried Jimmy's
belongings, and the plastice bag withthe lock of his hair to her
son's room. She started placing the model cars and other personal
things back in his room exactly where he had always kept them. She
laid down across his bed and hugging his pillow, cried herself to
sleep.

It was around midnight when Sally awoke.Laying beside her on the bed
was a folded letter. the letter said:

"dear Mom, I know you're going to miss me; but don't think that I
will ever forget you, or stop loving you, just cause I'm not around
to say I LOVE YOU. I will always love you, mom, even more with each
day. Someday we wil see each other again. Until then, if you want
to adopt a little boy so you won't be so lonely, that's okay with
me. He can have my room and old stuff to play with. But, if you
decide to get a girl instead, she probably wouldn't like the same
things us boys do. you'll have to buy her dolls and stuff girls
like, you know. Don't be sad thinking about me. This really is a
neat place. Grandma and Grandpa met me as soon as I got here and
showed me around some, but it will take a long time to see
everything. The angels are soo cool. I love to watch them fly, and
you know what? God doesn't look like any of his pictures. yet,
when I saw him, I knew it was him. God himself took me to see
GOD! and guess what, Mom? I got to sit on GOd's knee and talk to
him, like I was somebody important.
That's when I told him that I wanted to writ you a letter, to tell
you good-bye and everything. But I already knew that wasn't allowed.
Well, you know what Mom? God handed me some paper and his own pen to
write you this letter. I think urbashil is the name of the angel
whos going to drop this letter off to you. God said for me to give
you the answer to one of the questions you asked him "Where was he
when I needed him?" God said he was in the same place with me, as
when he was in earth, He was right ther, as he alwasy
is with all of his children.

Oh, by the way, Mom, no one else can see what I've written except
for you. To everyone else this is just a blank piece of paper.
Isn't that cool? I have to give God his pen back now. He needs it
to write some more names in the Book of Life. Tonight I get to sit
at the table with GOD for supper. I'm, sure the food will be
great.

Oh, I almost forgot to tell you. I don't hurt anymore. the cancer is
all gone. I'm glad because I couldn't stnad theat pain anymore and
God couldn't stand to see me hurt so much, either That's when he
sent the angel of Mercy to come and get me....The angel said I was a
Special Delivery!!!!

Thank you for the good story..I'm sure this one is out of Reader's Digest, Chicken Soup book isn't it?

TURBINE ji!
your are welcome.I am sorry this story not from those books.

Well thank you for the story anyways. But do you mind telling me where you got the story from? I'm just curious to know.

Dear Urbi...

"What dreams may come": I am sure you gonna like this movie...

Regards!!!

Urbi Ji,

Thank you for the reply..I appreciate it.

MIRAGE ji! thank you. I think i did already.

TURBINE ji! your are welcome.

How about "Meet Joe Black' and " City of Angels" ??? Did you try these ???

By the way, I am lost between urbi and turbine!!! Sounds so related... Are you dudes mirror image of each other??? Just curious...

Regards!!!!

Mirage,

I loved both those movies, especially "Meet Joe Black" . Brad Pitt and Anthony Hopkins both do a very good job of acting. Sorry I'm not related to Urbi ji in anyway. Actually we are similar. We do appreciate good stories just like you so I guess we're all similar aren't we?

When you are pregnant, often someone gives you a baby's first memory book.
And in it, They are supposed to record all those wonderful firsts, like, first
time he sat up, first time she rolls over, first time he crawls, first
tooth, etc.

Well for those who have children with special needs, those first
milestones are often late, if they ever come at all.

Now, they could fib and say that seeing those milestone reminders in print was
just too painful for them with their children with special needs. But the truth
is, They are just not very good at keeping track of those kind of things when they r worried about their sweet ones.

a story from a mom who got special needs son.

if I HAD taken the time to record something from my son's firsts, I'd
have written down the story of his first tooth.

Most babies cry and fuss when they are teething. Hey, those little teeth are
sharp! And it hurts pushing through the gums.
Not Aaron...

Well Aaron was pushing a year old (he was 2 1/2 months premature so you
could say his corrected age at this point was 9-10 months old)
And he was finally pretty healthy, but still on O2, still had the tube
feeds, still on the heart monitor, still taking phenobarb and lots of other
nasty drugs.
He was sitting in his rifton chair one afternoon, and I happened to look
over at the heart monitor. The green light was blinking so fast I couldn't
count the beats. I looked over at Aaron. Smiling, calm, just sittin' there
hangin' out.
Well, I thought, of course, the monitor must be busted, don't trust the
machine, look and listen to your child, that's what we were taught. So I
tried to take his pulse. Couldn't count it because it seemed so fast. Looked
at him again. Still happy as a clam. Went and got a stethoscope. Tried again
to count his heart rate. I was pretty sure it was heading up towards 200.
But that couldn't be, he was calm, he was smiling. So I called the doc and
explained what was going on. He said, oh, you must just not be hearing it
right, but why don't you bring him in just so we both feel sure.
I did. The doctor listened to him and by golly he really was tacacardic.
Dangerously so.
So they admitted him to ICU. There he sat in a little sling seat, smiling at
all the nurses, flirting up a storm. Heart racing a mile a minute. We did
tests, every blood test, muscle test, you name it, we checked it. All
systems fine, just this racing heart. 3 days later all of a sudden his heart
rate dropped down to normal range. We looked at his cute little smile, and
there was a tooth.
Who would have thought teething could put you in ICU!
Took him home, and made a mental note that THIS would be a story worth
remembering.

MIRAGE ji yes both movies r very nice. Thank u

Urbi Ji'!!!!

I am glad that you saw all of those extraordinary movies.

I am also glad to go through some of your stories, pretty cool.

By reading your last story, I feel like seeing again- "It's A Wonderful life"- Do you???

Having some hard time
I just wanted to say that although some days are fine and I don't
shed a tear, others aren't and I can't help but cry. The nice thing
is that usually my tears are short-lived. I usually am affected the
most when I am in the car. I still haven't taken her car seat out of
her truck. I don't even drive it really. I opened one of the
compartments the other day. It was still filled with her stuff- cans
of milk, diapers, a blanket, a jacket, etc. The last Dora video she
watched is still in the DVD player. I can't seem to move any of her
things. She is still all over my house.
I feel like I am living like she is on a long vacation and she may
come back. Does that sound strange?

MIRAGE ji! yep that's a nice movie.I do like to re watch it.

I know that Jas was suffering for a very long time before he
passed. He struggled to stay alive. He wanted to live. He was
fighting with his body which was shutting down. I hear the same
things from everyone about how their children passed and it is all
so similar to how Jac passed. I don't think our kids were in pain
at that time. I know that Jac wasn't in any pain because he was
on Morphine for a week. I wanted it that way because I couldn't
stand to watch his little body shut down. He wanted to live so
badly. His stomach stopped emptying too. He was struggling to
breathe too. The brain seems to shut down the same way for our kids
doesn't it. I miss Jac but I don't miss his pain and suffering. I
just hope that our little angels are all smiling and playing and
laughing and singing and dancing, up in heaven. I wish I could look
through a cloud and see their beautiful faces, just once.

Evan died yesterday. With all of the hard decisions that we have made, the
hardest thing that I have ever done was leaving him at the hospital last night
and coming home to our house which is so full of Evan. I slept for awhile, I
hadn't slept for 36 hours before then, but now I am awake so I thought I would
check in.
The next section is long. It tells a little about Evan's last few days and
final moments. I know some of you are interested, others probably won't want to
read this. Evan had a stomach bug last week, and his blood was really out of
wack. We got blood work every day but Thanksgiving. It kept getting worse, but
he didn't seem to be getting worse. On Tuesday he had an xray that showed that
his intestines were full of air. We've had that before, but his lungs looked
good. Wednesday we took him to his pediatrician who said that his lungs sounded
fine, but his bloodwork was a little worse. His hemotologist said that we could
wait and see realative to giving him a transfusion. We had a wonderful
Thanksgiving. Evan was held almost all day, and seemed so comfortable. In the
afternoon I noticed that he was breathing faster than normal, but he slept
pretty good and was able to have his sats in the 90's (with O2 on BiPap) so we
thought everythingwas still good. Friday morning we left for Vermont. He had
bloodwork on the way. When we got to Vermont we called and found that his
bloodwork had gotten a little bit worse, but he still seemed ok. Still
breathing a little faster than normal, but we attributed that to the low
Hemoglobin. In the evening he started breathing faster, and when I put him on
the pulseox I found that he was having trouble keeping his sats in the 70's.
With albuterol treatments, Bipap and O2 I got him into the 80's. Over the next
few hours he seemed to get worse so at midnight I woke up Bob, rousted our other
two kids and set off for the hospital. Although we didn't say it, both of us
were very worried that at the rate that Evan seemed to be getting worse he might
not make it to the hospital. I gave him a bunch of albuterol treatments and
saline and Bob drove pretty fast and there wasn't any traffic. I called his
hemotologist and he called the hospital. They were ready for us when we arrived
and we had him back on PiPap with O2 in just a few minutes. They also started
pumping IV antibiotics into him within minutes. The transfusion took a little
longer, but we have never been processed through the ER so fast before. They
increased his BiPap settings, increased O2 and gave him more albuterol. It
seemed to help and he got into the 90's for sats. He was awake on and off, and
really doesn't like BiPap, but he does like head rubs and being held. He got
those things, but continued to work harder and harder to keep his sats up. They
did a chest x-ray and saw that his lungs were full of pneumonia and that he had
a big pocket of fluid on one side of his lungs. They think that it was
bacterial because of how clear his x-ray was on Tuesday and what a mess it was
Saturday. We were offered intubation and draining of his chest. We said no --
which was consistant with the limitations that we had put on Evan's care, but
that we wanted to keep going with O2 and BiPap and get more vigorous with chest
PT. When he was breathing more than 80 times a minute, we couldn't take it
anymore. We had them him give him his normal dose of ativan. We hoped that if
he relaxed he might let the BiPap work more, but we also knew that if he really
needed to breathe that hard we were putting him in a more difficult situation.
It really wasn't a hard decision. We couldn't let him suffer that way. We gave
him ativan and held him. He relaxed a little. Bob and I both expected him to
surprise the doctors again, but he didn't this time. He slowly dropped his
sats. I don't know how long it took, but once his heart rate started to drop we
took all of the stuff off and held him and kissed him. He died in mine and
Bob's arms at 10:50 AM on 11/27/2004. We held him a long time. After giving
him a bath and getting him dressed he seemed to have a little grin on his face,
and he seemed to be peeking -- he really looked like Evan. Bob drove to my
parents (where Alec and Samantha were) and told them in person. We left the
decision to them on whether to go see Evan or not. I was so proud of how brave
Alec and Samantha were. They gave him kisses. They also worked with the child
life specialist and made hand prints of both their hands and Evan's.
For how difficult as this was, it could have been so much worse, and without a
different outcome could not have been better. Evan died in our arms in a
hospital that knew him and us. Many of Evan's favorite nurses were there, even
though it was the Saturday after Thanksgiving, several of Evan's favorite
doctors were on call and stopped by. For a non-verbal 4 year old, Evan sure
made a lot of friends. It must have been his winning smile!

My daughter is in ICU. There is an excellent, safe, and caring doctor that has
facilitated establishing a "Care Plan" for my daughter's care. As my daughter's
strongest advocate, and as a very loving and concerned Mom, I observe the
people's work who are caring for my daughter's medical needs to see if it is
done with the best care and to see if it is done properly as far as I can.
I have had battles so to say with nurses who were not gentle and who did not
take care of her needs well. As I have been working on improving my own skills
with advocating for my daughter, I have decided not to allow anyone in the
medical field to "dump" their issues on me either.
When a "Care Plan" is implemented, it is not always followed, depending on the
individual in the medical staff involved. There are even medical professionals
who have "abused" the "Care Plan" thinking it is grounds to remove parental
power (exercising ability to help their child; basic meaning in this context).
Please email me if you have been in a similar situation and you wish to share
tips with me on how best to protect my daughter and my daughter's and my
relationship. My daughter needs my love, touch, and all my care to help her. She
is in such critical condition, that based on how she does could lead to her
getting better, or could lead to a life and death situation (which is where she
is currently tipping toward).
Please help support me. Besides a few very safe caring healthcare professionals,
I don't feel supported as a parent. I feel more of the hospital being against me
than for me to support me in loving and caring for my daughter in this time.
There are helpful, safe people, but I have to be strategic to best advocate for
my daughter.... to advocate for her the BEST care.
There are many things I have done so far to be proactive in documenting, opening
better communications with the primary caregivers including doctors for my
daughter... but sometimes the atmosphere leads me to feel unsafe, unprotected,
unsupported, misunderstood when the safe people are not around.

Mom who is pulling for her precious daughter and pulling for herself.