I don’t want to give my daughter everything she wants

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Genevive loves life and is happy right now. She smiles. She cries when she
sits on our lap. She sleeps in the middle of the day. She wants lots of
attention. She likes to sit on our lap.

I can’t give her everything she wants. I don’t want to be one of those old
grandma’s who can’t do anything without her hands full every day. I want the
grandmother/granddaughter relationship where I’m still the one who changes
others diapers, gets her down for meals, brings her milk without spilling it,
does laundry, gets her meals on the table exactly when she is hungry, makes
certain every light is turned on so she never comes home at night to an empty
house, carries her down to the car, feeds her snacks, makes sure she gets to
her room and brushes her hair before bedtime, picks her up from school safely
and gets her to her room on time, gets her to college and graduate, gets her
to her room at night to brush her hair, buys her clothes, buys her the gifts
she wants, gives her the ones she doesn’t want — all while being her baby and
being a grandparent herself. She’ll never learn to walk by herself.

The only way to get some time away from having to do all the things I have to
do is to quit taking on the burdens of life. So many responsibilities and
things to do. And we’re supposed to feel lucky to have parents who get us
through childhood to adulthood. Why do we have to do it all in addition to
the things that will give us the best life?

I will not do it all for my kids. I have no choice. That’s my only choice,
isn’t it? The only other choice is to not have kids. I don’t have a choice
either. But I don’t want to be the one who has to make my daughter, or my
wife, or my wife’s sister, get up every day with the knowledge that they’re
walking through the valley of the shadow of death. They don’t know what it’s
like to have a mom who never sleeps. They don’t know how lonely it is to get
up early at 5am and stay up late at night, knowing that you’re going to have
to go to work in the morning.

I will not make them suffer.

So we go to work. We make money. We enjoy life. We try to spend our days in
peace and happiness.

I wonder, though, sometimes, if they think of me that way. Because they get
up and go to work with me at least, I assume, to get money. Does their mom
go to work with them to get money? I can see things getting better for us if
we stopped living in the shadow of an uninsurable burden that prevents us
from enjoying life. Instead of having to buy everything out of necessity, we
could have a wonderful life where we are always free to choose, not what’s
left over, not what’s left over until we’ve run out of money, but what we
want, what we can afford. What will happen if we stop trying to live without
money to sustain us? If we can live on just what’s in our bank accounts? That
would be wonderful.

But then we’ll never know if it really would be wonderful. At least, I don’t
think it would. I don’t have any clue.

I don’t want to be the one who has to make them suffer. I don’t want to
worry about them. I don’t want to tell them that it’s going to take money
to buy them a nice house. I don’t want to tell them that it’s going to take
money to buy them the clothes that they want to wear. I don’t want to tell
them that it’s going to take money to go to school and graduate.

All I want is for them to have the same life that I had, the life that I lost
to an illness when I was 20.

I want them to have what I had. Or even better. I want them to have all of
the things that I knew I couldn’t have.

I want them to have all of the things that I wanted to have.

I want them to be free to live the life they want to live.

This is my worst nightmare.

A dream that is going to feel a lot like reality.

We are going to be the ones who sacrifice everything if we don’t stop putting
it all on our daughter. They’re going to have to sacrifice more of their
career dreams if we don’t stop spending every waking moment in trying to find
a cure for our illness. Do we have the cure for it yet? Are we going to find
it? Or do we have to wait for it to “catch” on? It only takes an infection
to get us. It must be something we can’t seem to catch for long enough to be
effective.

Is it too late for us to get our life together? Are we too late for them?

Is it too late for us to make more money? Is it too late for us to make
things in our life a great deal more comfortable?

Is the life that we have now, the way we live, the choices that we make, the
relationships that we have, the life that we want, too much for them?

Is our illness a curse?

Is the pain that goes with it a curse?

Is it all a curse?

I have thought of a way out of this nightmare. I have thought about how to
make another dream come true. I have thought of a way for us to be the ones
that are always satisfied, always happy, always successful. I have thought of
how to make everything happen for them that I know would make them happy.

I have thought about getting to where they can be anything they want, where
their life will be their own, where they will never have to live with an
uninsurable burden.

I have thought about making them happy the way I want to be happy.

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