Is This Going to be Sad?

A “Wolf-Hirschhorn family reunion” is a time to share tears and laughter

It wasn’t sad: Enjoying an impromptu get-together at the second Wolf-Hirschhorn reunion are (from left) Stephanie H., Wanda H., Christopher H., Craig R. (partial hidden), AJ G., Christine G., Justin F., Kelly G., and Brian J.

When Craig Richardson was diagnosed with Wolf-Hirschhorn syndrome, a rare chromosomal disorder also known as 4p-, his parents, Tom and Becky, were told he would not live long and would never do the same things as other children. Although the syndrome was extremely rare, Becky believed there had to be other families out there. Ten years ago, when Craig was three years old, Becky sent a Search letter to Exceptional Parent. Over the next six months, she received eight responses.  Those letters marked the start of the Wolf-Hirschhorn Parent Network.

Connections and hope

Because so little was known about the syndrome, Becky’s first initiative was to set up an information exchange.  Parents were asked to submit a biography of their child in exchange for receiving biographies of other children.

Sometime these histories proved medically valuable as the experiences of others alerted “newer” parents that their children were at risk of developing seizures, curvature of the spine and eye disease.

The biographies also provided feelings of connection and hope.  Parents discovered that other children with the syndrome also loved mirrors, balloons, music and motion.  They learned that some do learn to walk, some can be toilet trained and even those with the most limited skills respond to love, enjoy rough-housing and unfailingly give the gift of a smile.

The group’s first “get-together”, held in Iowa in 1992, was attended by 25 families – mostly mothers and children.  It was such a rewarding experience, they went home to encourage their husbands and other relatives to attend the next “Reunion.”

Is this going to be sad?

But Christopher’s father wasn’t sure he really wanted to spend time with other families affected by his son’s syndrome. “Is this going to be sad?” he asked upon arrival at the group’s second Reunion.

Sara Wood, on of the event organizers, flung open the door to her family’s hotel room.  Inside were various members of four families – children with the syndrome, parents, siblings and a grandmother.  The sounds of laughing, non-stop talking and children playing could be heard.  Scattered about were suitcases, wheelchairs, photo albums and toys.  “Does this look sad” Sara asked.

The event, held in Asheville, North Carolina, drew families from as far away as California, Canada and Germany.  Michelle, 23, was the oldest person with the syndrome at the reunion – she had been diagnosed only in the past year.  Anthony, the youngest child, was 21 months old.  Also attending were one foster family, two adoptive families and one family whose infant with the syndrome had died.

What a support to be with others… 

The event gave families a chance to ask questions and share experiences.  One mother probably summed up the experiences of many – “After I was here a little while, I just started crying… I can’t tell you how happy I am that I came – just to see the other children, to see their ages, to meet their families.  They feel like friends I have known all my life…  What a support to be with others who also appreciate and love their children!”

And Christopher’s father?  He left the reunion with a smile on his face and said, “It wasn’t sad.”

-Christine N. Kleimola

Christine Kleimola is the adoptive mother of Rachel Melinda, 5.  Christine and Rachel live in Ypsilanti, Michigan.

 

*This article appeared in the Exceptional Parent magazine, January 1995, page 26.

I Steal Hearts

 

 

 

 

 

 

 

 

 

 

 

Ever since Justine’s birth, I have been told so many negative things.  Justine was born with a rare chromosomal abnormality called 4p- or Wolf-Hirschhorn Syndrome.  She was supposedly one in about one hundred in the country who had this syndrome at that time.  Since then I have found out that many of the things that I was told about her were either erroneous or rare occurrences.  I have set out to prove the doctors and all the statistics wrong.

Justine is now for and a half years old and is able to do many things I was given no hope of her ever doing.  She is so full of surprises and always makes me smile.  When Justine was about four months old she devised a unique way to freely more herself about the apartment.  She really enjoyed being able to explore her environment.

At almost two she learned how to sit.  One time at the doctor’s office, I sat her down on the table. The doctor instantly reached out to catch her, but to his surprise, she didn’t fall over.  He walked around the table with his mouth hanging open.  All he could say was, “Oh my God, I don’t believe it.”  Doctors never thought she’d be able to sit up by herself.  This was the first milestone this remarkable little girl reached.

Now, even more amazing, Justine, who weighs only a little more than sixteen pounds, is able to walk.  People are always afraid that she’ll break, or they think that she can’t do anything, but she has a will that just won’t let her give up.

Bops, as Justine is fondly called, has given me and the rest of our family a lot to be thankful for.  Life has not been easy for us, but I wouldn’t change mine for the world.  Caring for Justine has always been a time-consuming job, but she hardly ever cries or whines.  I know she is sick when she starts to complain or cries a lot.

My brother has a two-and-a-half-year-old daughter and he appreciates the fact that his child is healthy.  It can really make you think about what you have when someone you love has to work so much harder to do the same things.

Bops is my pride and joy.  She’s shown me that there is always some good in life, even when things look bad.  We’ve has some hard times.  Once, Justine was so sick that she has to be transported by helicopter for her grandparents’ home to the children’s hospital near our home.  She looked so helpless.

She was hooked up to a respirator because she has seizures for two-and-a-half hours.  It broke my heart to see her like that, but I couldn’t let her know.  I had to be strong for her.

When Bops woke up the next day, I was sitting in the rocker next to her crib.  Tears were running down her little cheeks and no sound came out of her mouth.  I suddenly started yelling for the doctors to shut the machine off.  I told them, “She’s going to stop breathing!”  They acted like I was crazy, but because of my insistence they began to watch her closely.  Much to their dismay, I was right.

Once she figured out that the machine was breathing for her, she started taking fewer breaths.  This was on Saturday morning.  Sunday they shut the machine off, and by Tuesday afternoon they had released her.  From Pediatric ICU to home in five days sounds to me like a little girl who will be president someday!

I have many dreams for my daughter.  I want her to do and see everything she possibly can.  I won’t let her give up, and I know she won’t let herself give up either.  That is why so many people love this little girl.  Also, she can sense when somebody needs something.  She knows just when Mommy needs a hug or when to leave Mommy alone.  I think she can sense when someone close to her is hurting.

For instance, one night three years ago a boy from her preschool class passed away.  Justine woke up crying during the night about the same time the little boy died.  Since then she has done that on other occasions.  I believe that this little girl has a special gift.  She can sense when people are hurting or unhappy, and she knows just how to get them to feel better.

Bops will do most anything to make me laugh.  From crawling into something to practically standing on her head, she knows just what to do.  One time she crawled into a cupboard.  She looked so cute that I had to take several pictures.  The other day when I was tired and crabby, Justine crawled into a red cart and got stuck.  I couldn’t help but laugh at her.  She looked so funny all bunched up in the cart.

Then there was the time she fell into the shower- fully-clothed!  It was definitely one of her better “stunts”.  She looked so surprised.  I couldn’t do anything but laugh.  She always seems to find the oddest predicaments to get herself into, and she always makes me laugh.

Other times it is her smile.  She has this knockout smile that she inherited from her father, and somehow she knows just how to use it to make everyone around her feel better.  When we are in the store, people are continually coming up and talking to her.  I don’t know some of the people but she does.

Justine will also go to anyone who is willing to take her.  She trusts everyone.  We have made efforts to show her to take some precautions.  When you have a child that is as outgoing and friendly as my Justine, it is difficult to get mad at her when she does something wrong, especially if she follows up by doing something funny.

She still shows no fear, which only justifies mine.  I just dread the day someone might hurt her.  One of my biggest fears is that she will go up to the wrong people and they’ll take off with her.

Justine has the ability to steal you heart, from her being so tiny to her knockout smile.  You’d better watch out or she’ll have you hook, line and sinker.  Sometimes I think she should have come with a warning label:

BEWARE! I STEAL HEARTS. by Valerie Dillavou

This story appeared in the Exceptional Parent Magazine, July 1991

Watch Valerie and Justine’s interview at the 2006 National Conference.

http://www.youtube.com/watch?v=Wr7l-S-B7VU

http://www.youtube.com/4psupportgroup#p/u/7/-CPko8aiUBo

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