Poem Format

Mommy's Poem to Sarah

Sarah, you’re my angel, you’re my light
You’re the reason my heart and my soul is just right.

You have shown me the meaning of true love,
An unconditional love, a love I am so proud of.

I will forever be a part of you and forever you’ll
be a part of me
I will always be there for you, something that
just will always be.

You and your sister are also a gift to each other,
a gift that will always be treasured,
You two have a love that is so strong, so special,
so bonded that it will last forever.

You are my strength when things get hard or
if I have a bad day,
All I have to do is to look into your sweet eyes and then
I know that things will be ok.

You have taught me so much about myself,
You have shown me how deep love goes,
You have helped me see how unconditional it is and
how far I still have to go.

And because of you,
I have found a love that few ever know.

You have shown me how to be strong and how to
appreciate the very smallest things,
I’ve become a much better person because of
the daily joy you bring.

I will always and forever love you, no matter
where the road of life takes us to,
You are my angel, my strength, my wisdom, my light
I will always and forever be true to you.

You are a part of my soul, a part of my
being, a part of my heart,
We have a special bond, a special gift where
we will never ever be apart.

Sarah you’re my angel, you’re my light,
because of you, you are the reason my world is now so right.

Love Always,
Your Mommy

Where Are The Parents?

They are on the phone to doctors and hospitals and fighting with insurance compies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?
They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?
They are sitting, blearly eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering: is this the time when my child doesn't pull through? They are sitting patiently, in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?
They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?
They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometimes 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?
They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families. They are busy, trying to survive.

Written by Sue Stuyvesant

Someone I Love

Someone I love relies on me in ways you will
never understand.

Someone I love endures pain and challenges that break
my heart and renew my spirit at the same time.
Someone I love is unable to advocate for themselves
for things that most of us take for granted.

Someone I love will never have the opportunities
that every child should have.

Someone I love will need unconditional love and support after
I am gone, this frightens me to the core.

Someone I love encounters pity, stereotyping responses,
and prejudice at every turn, because they look,
act, and/or learn differently than others.

Someone I love has needs that require me to
allow "outsiders" to have power and input in areas
that should be mine alone to meet.

Someone I love will continue to look to me
for everything in life long after other children are able to
assume a place as part of the world.

Someone I love has needs that require more
time and energy than I have to give.

Someone I love has needs that mean I am not
able to meet basic needs of my own.

Someone I love has needs that have become the driving
force behind major decisions my family makes.

Someone I love has changed me in ways I will never
be able to describe.

Someone I love has taught me about love and about
the really important things in life...

And still others don't understand what it is to be
me, they aren't living in my skin.

~Lori Hickman~