Why Make-A-Wish

[Guest guest]

and ph both got granted wishes from Make a Wish-- I wrote a

story for the SDSI newsletter on 's wish and then I wrote another

one on WHY Grant a Wish?.. I thought some of you might like to read

this..I will send 's story separately

Why Make-A-Wish?

Thanks to all of you who responded to my last article about 's

wish. The responses and ensuing conversations prompted me to write

another article. Why Make-A-Wish?

Accepting that your child has a life threatening illness can be a

struggle, one that lasts a lifetime. Accepting a wish from a wish

granting organization like Make-A-Wish, can sometimes be scary because

you are acknowledging that your child does indeed have a

life-threatening illness. Something that we all want to forget.

If you are like us, you have medical bills stacked in every corner

of the house, you spend hours each week talking to insurance companies

and medical billing departments. It may seem as if you spend as much

time in the doctor's offices as you do on the phone discussing the bills

their visits bring about. Is this a reason to grant your child a wish?

No, but it is a part of what Make-A-Wish is all about. They want the

entire family to forget about doctors, hospitals and anything medical

during the child's wish.

At first and I felt guilty for allowing our children's wishes

to be granted. Then we thought about several things. We have come to

accept our lives as normal. In reality our lives are far from normal.

Normal children have not been under anesthesia 10 times before they are

4 1/2. Normal families do not celebrate the first time a cold DOESN'T

turn into a bacterial infection. Normal families don't rejoice when

their child learns to swallow the 14 or more capsules they have to take

each day. We cannot look at our children and think of what they will be

when they grow up without thinking about SDS. " Will they make it to be

an adult? " always pops into our minds. Normal families don't wonder if

the lab results are REALLY correct. I cannot tell you how many times I

have stared at the lab results praying that the results were wrong. I

am sure you have all done the same thing. My children play doctor, but

not like other children. They draw blood from their stuffed animals

(they pull back on the play needle like pros). They even know how to tie

the rubber strip around the arm and tap to find the vein. We've had to

tell them NOT to tie anything around their arms at home! places

IVs in his bear complete with splint and all. ph lines all of his

animals up and gives them medicine. no longer cries when he gets

an IV, instead he tells the nurses, " When ph comes in here, he is

going to cry, but you tell him that y said it doesn't hurt. "

is six and healthy, but even his life is affected. No one

escapes without being affected by this illness.

I spoke with Ann from Make-A-Wish of Richmond and Western

Virginia recently. She tells me that the vast majority of the wish

children survive their illness. There are numerous children out there

who are eligible for wishes that have not been referred to MAW. They

have the capacity to grant more wishes, but it is a policy of

Make-A-Wish not to solicit children for a wish. Ann says, " Many parents

are afraid to refer their children because they think that we grant

'dying wishes' or 'last wishes.' This Myth is the biggest challenge that

our foundation faces. We are currently trying to increase public

awareness that we grant wishes to children with life threatening

illnesses. While we do grant wishes to children with terminal

illnesses, most of our children are survivors. By granting them a wish,

we seek to give the child the opportunity to be a child again. "

When and ph went on their wish trips, MAW sent us a camera

and a form for the boys to sign. The form included statements like, " I

promise to forget about doctors, hospitals and anything medical " and " I

promise to smile whenever I think about my wish. " Our boys are still

smiling form ear to ear! Whenever they get anything in the mail they

ask, " Is this from the wish people? "

We have been blessed abundantly and this added to our feelings of

guilt. I told Ann that we felt this way and she told us that first day

she called, " Don't feel guilty, we grant wishes for the children no

matter what you make, etc… " Make-A-Wish can do things that we parents

cannot! would NEVER have met Steve from Blue's Clues without MAW!

Sometimes we have to be humble and accept gifts from others. One day we

will be able donate to make-A-Wish and help make another child's wish

come true.

Pattie Curran

Make-A-Wish Mission statement: To grant the wishes of children

(between the ages of 2 1/2 and 18) with life threatening illness or

conditions to enrich hope, strength and joy.

For more information contact: Make-A-Wish of America

(WISH) or Make-A-Wish of Richmond & Western Virginia (WISH)

--

Peace Be With You!

~Pattie~ Mom to , 7; 4 3/4 (SDS,

hypogammaglobulinemia/CVID) and ph 3 1/2 (SDS)

" The friend who finds you when you might be lost is a very welcome

friend. " ~~Lessons from the Hundred-Acre Wood