Sioux FallsRapid City

A Holiday Gift Can Change Lives

Let me tell you about one little boy named Sam, and how a holiday gift can change a life.

Sam was born with congenital microcephaly (small head size).  When Sam was born doctors told his parents to simply take him home and love him.  Doctors didn’t know what to do with him.  He had only a 5% chance of survival.

Sam does not speak.  He cannot see.  He does not walk.  He does not eat on his own.  However, Sam can learn.  It just takes him longer.  He needs a lot of repetition to master the simplest of tasks.  It took him a year to learn to raise his arms so his lap tray could be placed on his wheelchair.  He does listen.  Sam responds to music. Sam’s parents, Erin and Jeff, always keep hope.  They knew he could hear when he reached towards a sound in music class at 16 months old.  Therapists knew he could learn when he moved up and down to cues in songs during therapy.

Sam’s parents wanted him to have the best learning environment surrounding him as soon as possible.  He enrolled in a Birth to 3 program and attended the School for the Blind for awhile.  Because of his diagnosis however he had to change programs and really didn’t fit easily into any one program.  When he became school aged he attended the public school.  Mother Erin attended classes with him and was by his side 24-hours a day.

This holiday season, celebrate the things in your life that give you hope.  Big AND small successes; even the kindness and devotion of others.  Support is so important to the incredible work done with children with special needs.  These organizations give children and their families hope.

Success is slow for Sam and his family.  The family relies on faith and a whole lot of patience to help them.  Their lives are consumed with Sam’s daily care.  “Our biggest fear is not being able to care for him.  We are the only population who hopes they outlive their children,” Erin says sadly.

One winter Sam became very ill.  Children’s Care Hospital and School was there to help Sam and his family.  Erin and Jeff saw the compassionate care all the children received.  They knew if the time came for someone else to care for Sam, this was the best place for him to be.

Sam came to Children’s Care for summer school last year.  His team at Children’s Care worked together to develop a program specific to Sam’s needs and abilities.  His teacher worked with him one-on-one towards his goals.  If Sam needed a break from large group activities, there was an education assistant who could do additional one-on-one work with him in another area of the classroom.  Erin and Jeff were relieved and amazed at the level of attention Sam received during his day.

Children’s Care helps ease the fears and daily challenges for families.  Sam needs special equipment.  Children’s Care helps customize a wheelchair and leg braces for Sam.  Jeff and Erin are used to going to multiple buildings and waiting several hours for Sam to get the leg braces that help his muscles.  Sam’s therapist alerted Erin one morning as she brought Sam to school that he needed new leg braces.  Erin prepared herself for a long day ahead.  She asked where they needed to go first.  The therapist said no where, we will be able to fit him during his school day and have them ready for you by the time he’s ready to go home.  Erin was amazed.  It seemed too easy.

Another morning as Erin dropped Sam off in his classroom Sam’s education assistant said to her, “This isn’t just a job for us.  At the end of the day we may go home and leave but we still think about these kids all the time.  Anything we can do to make it easier for you to leave and know Sam is in good hands, we’ll do it.  We’ve been trained to know and anticipate that each child has different needs.”  Erin now has more time during her day to take care of herself and get the respite she hasn’t had for so many years.

“Every person at Children’s Care sees opportunity for Sam,” Erin said.  Please send your gift today so that Children’s Care can help other special girls and boys like Sam and his family.

Sam is seven years old now.  He attends school at Children’s but lives at home.  He loves music.  He enjoys scented markers in art.  The color red tastes like cherry.  Being read the book Chicka Chicka Boom Boom is one of his favorite activities.  Sam learns with a classroom of friends.

Erin shared how much more rested she is at the end of the day.  She is excited to pick Sam up from school.  “Children’s Care has given our family more freedom,” Erin says, “They have freed us up to be more of a typical family.”

Erin often reads the poem Welcome to Holland! By Emily Pearl Kingsley, to help keep perspective on their family’s life:

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared the unique experience to understand it, to imagine how it would feel.  It’s like this…

When you’re going to have a baby, it’s like you’re planning a fabulous vacation trip – to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, “Welcome to Holland.”

“HOLLAND?” you say.  “What do you mean Holland??  I signed up for Italy!  I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan.  They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It’s just a different place.

So you must go out and buy new guide books.  And you must learn a whole new language.  And you must meet a whole new group of people you would never have met.

It’s just a different place.  It’s slower-paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch you breath, you look around…and you begin to notice that Holland has windmills…and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there.  And for the rest of your life, you will say, “Yes, that’s where I was supposed to go.  That’s what I had planned.”

And the pain of that will never, ever, ever go away… because the loss of that dream is a very, very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things… about Holland.

Comments (2)

  1. Joni wrote:

    I was so touched by this poem. My daughter was diagnosed with microcephaly at 9 months old. I understand.

    Posted 15 Jan 2009 at 3:46 pm
  2. jessica wrote:

    My son is 13 months and he was diagnose with microcephaly since the day he was born. Also doctors gave him very little time in sruviving. He also can see walk or eat on his own, but he has change me and my life is so many beautfull ways. I know that he is a present from god just like yours. And im so glad god chose me just like you to be mothers like special kids like them. This poem is so deep and beautifull, i really love it.

    Posted 12 Jan 2010 at 7:36 pm

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"Children's Care Hospital & School was the lifeline our family needed when we realized nothing else was working successfully for our daughter, who has Angelman Syndrome. The consistent daily structure has been essential to helping her get control of her behaviors and therefore be pleased with herself. The staff is all about our daughter and helping her to be the best she can be."
– Linda C., Parent