Information

A New Experience for You


A New Experience for You

As you move into your role as grandparents of a CdLS child, changes take place for you and your family. Some are immediate and some occur over time:

“Being a grandparent means you have the love and concern of two generations.”
 
“The first six months he was so sick. I didn’t get to see him nearly as much as I wanted to. My whole life changed. I made myself available so that I could be there to take care of the other two kids so that the parents could spend the time taking care of him.”

“One of the hardest things I’ve had to do is to try to interact with other grandparents that have normal healthy grandchildren. I have not known what to say; we’ve felt ‘out of the loop.’ Initially any reference to my grandson brought me to immediate tears but after nearly two years, it is now becoming easier to talk about the syndrome with other people. I have since requested literature for a friend who is a pediatrician and have suggested to other friends that they include the CdLS Foundation as part of their annual giving plans.”

 “We both put our retirement in the works. We decided that we needed to be a large part of her life. We supported her and her Mom and Dad and bonded with her.”

“It was important for us to let our kids know that we were willing to help, not only our granddaughter with CdLS but the whole family. We were fortunate in being able to help by providing some small amount of money to pay a babysitter so the kids could get some ‘alone time.’ They could go out to a movie, get a pizza or do whatever they chose to do.  They could buy extra items of their choice. We were able to take care of our grandchild with CdLS so the rest of the family could get out and do things they couldn’t do if everyone went together. 

“The important thing that we discovered was that the support did not always have to be financial. Providing time away from the children, doing some housework, yard work, running errands, driving the other children to activities are all things that help immeasurably and cost little money. And most of all, these things remind our children that they are not alone.”

“While distance, financial resources and work requirements may limit the level of support we can provide our immediate family, there are no limits on our ability to support the Foundation in a variety of ways. In the end, it all benefits our children and many others in the CdLS family.”

“We did not live in the area when she was born. Of course we were concerned and wanted to help at all times. After five years we moved here and have thoroughly enjoyed keeping her and helping. She is such a joy.”

“I am able to baby sit two days a week while my daughter works. Early on we made a commitment to drive forty miles one evening a month so that they can go out to dinner and a movie alone and find reassurance in knowing that their little guy is being well cared for!”   

“She is the apple of my eye. Since very early in her life she has taken a liking to me, and me to her. For the longest time I think her mother and father were almost jealous. If she was fussing or having problem, I could comfort her and make things better. I was the only one that could hold her for extended periods of time.”

“I had not been around babies, much less sick babies, since our daughter was born thirty-two years ago. I will admit it hasn’t been easy, physically, for me.”

“Since she lives with me, it changed my life by giving me a new focus.”
 
“The most significant change in my life is that I learned very early in this experience what is really important. What was important to me was family, friends, and doing everything possible to lighten the load that my family now had to assume.”

About the website contents

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