Words of Encouragement for Grandparents 
of Children with CdLS

Words of Encouragement for Grandparents 
of Children with CdLS

Be that one person this child can know as ever vigilant for him or her. Be like the 


in a lighthouse, ever strong and supportive, not only for your grandchild but also for your child.

Published by the Cornelia de Lange Syndrome Foundation, Inc. U.S.A. 2006
CdLS Grandparent Booklet

Welcome, Grandparents!

You are now part of a new family, one we know you never expected to join. If you are feeling uncertain, confused and isolated, take comfort. We are here to guide you.

As a grandparent you play a very important role in the life of both your child and your grandchild with CdLS. Right now you may be unclear as to what that role should be. This may be a situation for which you were completely unprepared. You may be unsure about how you can help your family. You may not even understand your own feelings. 

You are not alone. There are other people like you out there, people who can help.

The CdLS Foundation recognizes that those most able to understand your concerns and show you the way are grandparents who have been through what you are going through now. With that in mind, we asked our experienced grandparents if they would be willing to contribute their insights to a handbook for new grandparents. No coaxing was needed; they rushed to help!     
The words in this booklet are those of grandmothers and grandfathers just like you, from all walks of life. Openly and honestly, they highlight moments in their personal journeys with their adult children and their grandchildren with CdLS.
Their comments include initial reactions to the diagnosis, their emotional ups and downs during the early days, perceptive observations as events unfolded and, finally, reflections on how their own lives and the lives of their families have been affected. They offer thoughtful insights and helpful coping strategies culled from hard-won experience, freely sharing both the pain and the unexpected joy they found along the way.
We at the CdLS Foundation, together with your fellow travelers, the grandparents whose voices grace these pages, sincerely hope that this booklet brings you reassurance, guidance and optimism, now and in the future. 

On Hearing the News

The news that your long-awaited grandchild has a disability and an uncertain future is something that no one wants to hear. Emotional responses can be varied, conflicting and very unsettling:  

“When we heard that our first grandchild was diagnosed at birth with CdLS, we were devastated. Our first reaction was disbelief! How could it be? There must be some mistake. No one ever took better care of herself during her pregnancy. What could have gone wrong? Our world was turned upside down!”

“I cried for days.”

“It was the most difficult thing we have faced.”

“I was angry with the way the geneticist delivered the news – without a hint of compassion or empathy.”

“I must admit that the expected joy of a beautiful grandchild, a perfect grandchild, was not there.”

“It never occurred to me to prepare my children for something like this.” 

“The information we were given was an absolute worst case scenario and based on very sketchy information. I left in a haze, devastated, not only because of what was happening to my granddaughter, but also because of what was happening to my daughter and son-in-law. I can’t recall ever feeling so completely helpless. They were in terrible pain, overwhelmed by the reality of what was happening and I could only sit and cry with them.” 

“While never saying anything to anyone, I was torn; I didn’t know whether I wanted her to survive or die. It was a terrible thing to think about.”     

“Within hours of his birth we were told that he ‘might face many challenges in his life.’ It was like being on an emotional roller coaster – happy one minute, fearful of the unknown the next. To me, he was a beautiful but premature baby. 

“The initial impact? I knew I would never again take for granted a newborn being born with ten fingers and ten toes.”

“She was almost three before she was fully diagnosed. We were so glad to get a name for her syndrome.”

After the Shock

Other concerns come to the surface. You begin to understand that this event may have a profound impact on your child’s family and on your own. In addition to your own grief, you have new worries, an adult child to comfort and new grandbaby in need of care.

Initial Reactions

“I was overwhelmed with guilt wondering if genes in my family had caused this.”  

“Because he was the seventh child in his family, my concern was for the tremendous responsibility resting upon his parents.”

“I felt inept. I had never cared for a baby with special needs.” 

“I was very optimistic. I felt the key words were ‘might’ and ‘could.’ I was in denial that he could possibly have all these things wrong with him.”

“I knew our lives had changed forever. His life would be very hard on the family and I wanted to make his life as easy as possible for him. He was the sweetest little boy; he grabbed my heart and never let it go.” 

“The shock didn’t set in for a long time because she was so medically fragile that it took all of our energy and time just to do the routine things to keep her alive. Each minute we spent with her made us love her more.”

“Even with the enormous shock I knew I loved this little girl. I hoped and prayed for her every day she was at the hospital. I also prayed for my children to have strength to get them through this.”

Looking for Answers

You cast around for answers to the many questions swirling in your head. Why did this happen? Who can help you understand the diagnosis? Who can comfort you in your grief? Where can you find support for yourself, your child and your grandchild?  
Some seek to blame the doctors or the technicians who ‘didn’t see it coming.’  

“If further testing had been done, it might have revealed a problem.”

Others worry that something in their family caused the syndrome. Still others may seek to blame the family of their son or daughter-in-law.

What Went Wrong?

“Playing the ‘blame game’ is self-destructive. We knew from our own experience, the death of one of our children at birth, that nothing could have been done to change the outcome. My wife and daughter were both ‘perfect’ in taking care of themselves during pregnancy. There was nothing that could have been done to alter the outcome. The birth of a perfectly healthy third daughter, born sixteen months after their child with CdLS proved the point; same Mom, same Dad, same attention to diet and exercise – different outcome.” 

“One thing that helped remove the guilt was meeting with the geneticist from the hospital. Things happen.” 

“Learning a lot more of what exactly takes place in the process of development from sperm/egg, to fetus, to a ready-to-be-born baby, led me to conclude that the wonder should not be so much ‘Why do things go wrong?’ but rather ‘Why do they so frequently go right?”

Information and Advice

Not all health professionals are knowledgeable about CdLS. Sometimes you must do your own research. Our grandparents found these resources most helpful: 

“As his symptoms were being identified, I went to the library in search of medical reference books. The parents searched on line. Once CdLS was mentioned, my daughter contacted the Foundation and talked to other parents.”

“I came home shortly after her birth and haunted the local hospital library. I checked out state institutions in the event that that became an option.”

“Advice and information came mostly from the parents with all the research they were doing on CdLS. The strength these parents had for their child and their family was just so powerful.”

“The CdLS Foundation is a tremendous support system for our family. I have seen my children go from ‘Where do we go from here?’ to ‘Wow! There is something out there for us!’” 

“Actually my daughter did the research. I have learned from my daughter and her husband. But most of all, I think I learned from my granddaughter herself.”

“I contacted the CdLS Foundation two months after he was born and received the information right away but it sat unopened on my desk for an entire month. I did not want to see it or see pictures of any children that were affected by the syndrome. I was fearful that our grandson would show many of the same symptoms.”

What If I Need Extra Help?

Professional counseling can be very helpful.

“The neonatal specialist put our daughter in touch with a family therapist specializing in grief counseling who saw them weekly for the first six weeks. Since there were no similar services in our area, I asked our daughter’s permission to see the counselor they were seeing. I have had several sessions and still see her for an occasional ‘tune-up.’” 

“Our initial contact with the CdLS Foundation was a remarkable experience. The people we talked to understood us, were knowledgeable, patient, and extremely helpful. As often as we called, we received a warm, friendly response. We quickly learned that there was a remarkable group of doctors and other professionals (educators, therapists, nutritionists) associated with the Foundation who had extensive experience with children with CdLS. They were not only available to answer our questions, but were also more than willing to share their knowledge with the local professionals taking care of our granddaughter.”

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.”

A New Experience for Your Family

Grandparents are often concerned about the impact on the rest of the family – children and other grandchildren. Here’s what some of our grandparents found:  

“If anything, my family pulled together for support of the parents. We have a large family of cousins, aunts and uncles. They all love her and include her in the family functions.”

“The initial impact on the family was sorrow, but with time, all our grandchildren loved her dearly and treated her the same as any other child.” 

 “My grandchild was in the hospital eighty-nine days. My husband and I visited four times a week. The other children, who live out of state, came several times to visit. My son-in-law set up a ‘blog’ and kept everyone up to date on almost a daily basis. Everyone was able to chart our grandson’s progress and came to know him even though they never had met him. He passed away at three months.”

“There were no big changes at all. Our other grandchildren accepted him, saw and respected his limitations, and enjoyed him.” 

“The other grandchildren accept her as if she were like them, but also know at the same time, that she is not. They do understand that she is different. They play with her and include her in their play. They do allow for her special needs. It is amazing the compassion and camaraderie they have with her. Sometimes they interpret how she is and that actually helps me see the situation from a child’s perspective.” 

“My wife and I felt for the longest time that our kids may have been ashamed of their child. It seemed that the only time she was out was to go to the doctor’s or to come to our house. My wife and I take her out with us when we have her. People stare or give you funny looks, sure. They are ignorant of the condition and should be ignored or enlightened if possible.”  

How Do I Treat my Grandchild with CdLS?

New grandparents may wonder if they can participate in the life of a grandchild with CdLS in the same manner as they do with their other grandchildren.

“Yes, absolutely, I participate in the life of my grandchild with CdLS in the same manner as I do with my other grandchildren. I have sleepovers where at times I have all seven of my grandchildren including my grandchild with CdLS. I see no differences; they are all my grandchildren. All are as one and the same family. Each of my grandchildren has his or her own identity. I see them all as normal in their own way.”

“We have limited contact, other than phone calls and letters, because of the distance between us. Sometimes my grandson is able to speak a few words into the phone but not often. Mostly I serve as a listening ear for his mother when she needs to unload.” 

Should I Do Some Things Differently?

Depending on circumstances, you may have to do some things differently.

“I do treat the grandchildren differently due to age. My granddaughter is aware that her brother is special, and knows that I love her just as much as I love him, but when I am with him, he comes first.”

“Clearly the interaction with our grandchildren was prescribed by their ability to communicate. Our granddaughter with CdLS was at a distinct disadvantage here and we had to work especially hard to try and understand what she wanted. On the other hand, when we went to the beach or the zoo or to a picnic, the entire family participated.”

“Given the time necessary to raise a child with a disability, the ‘normal’ children sometimes felt neglected and an effort by both parents and grandparents had to be made to make sure they felt special and important. All three children were under four years old and it was impossible to explain why one child was getting more attention than another. This is a most difficult tightrope to walk.” 

“He gets a little more of my time than the others but only because of his special needs, like tube feedings, and because of my taking the time to understand his needs when he’s trying to communicate them.” 

“She seems to love to come and spend the weekend with me. It is like her little getaway. Other children are invited for sleepovers but my grandchild is not. When she stays with me I try to do special things with her.” 

“He is twenty-five and in a group home. I visit him often. At holidays and parties all of the family go and stay about six hours. This is a wonderful and happy group home. My seven-year old granddaughter loves visiting it.”

The Long Term

It is only natural for there to be changes for you and your family over the long term. Many grandparents and family members find much to appreciate in the experience.

Changes for You

“When you are blessed with a grandchild with CdLS, you spin into a different mode. You hold two generations in your hands. There is a saying, ‘You hold your children’s hands for a little while but you hold their hearts forever.’ This is so true, but I think as a grandparent of a child with CdLS, ‘You go back to holding your child’s hands again for a while,’ which, for me, has been a privilege.”  

“He will be four soon. For some time I didn’t think we would have long term goals. He runs, jumps, and climbs now.” 

“I have become more patient and tolerant. Of course, caring for her by myself has become my primary purpose in life. I am thinking ahead to get things in order when I am no longer around”

“She brought out an inner strength I didn’t know I had.”

“My grandchild died. How it changed me. My relationship with her was so good and I believe she knew my touch and voice. Her life helped me to appreciate the smaller things in life and not take things for granted. Our family has grown together.”

“I am a more caring person with people who have handicaps. Also I’m very open to tell others about my grandson with CdLS and about the Foundation.”

“The greatest gift in life is grandchildren. I play with them, shop with them, laugh and cry with them. But life keeps changing and they grow up, go to school, do sports and move on to friends etc. He is special because it takes time to see how he will develop.  We’ve watched him go from not hearing to hearing, from not crawling or walking to running and climbing. Each day is a challenge with him and we don’t know what to expect. Since he is developing much slower, we get to ‘hang onto him’ a little longer.”

Changes for Your Family

“Our family very quickly became much more tolerant of people with disabilities and hopefully it has made our other five grandchildren more loving people. As we all coped with this, it has made our family very close and concerned for each other. It is very gratifying to see.”  

“In addition to the unrelenting daily grind of raising a child who is handicapped, there are other down sides, not the least of which certainly must be the strain on marital relationships. Families that survive become exceptionally strong and resilient. We are most thankful that our grandson’s family fits that mold.”  

“I was most impressed with the strength that my daughter and son-in-law displayed. The title of the book we received from the Foundation was called Facing the Challenges.  These two young people did exactly that and succeeded beyond my wildest dreams. Their strength of character really rose to the challenge and they did a magnificent job.”

“We have seen the physical and emotional toll that caring for a child with special needs has taken on our daughter and her husband. Every spare moment is spent working with the child. We see them missing out on social activities with other young families; they don’t get out frequently. We worry about the strain this can put on a marriage. They are wonderful parents and they never complain.”  

Suggestions for New Grandparents

“As a grandparent one needs to be steadfast in the involvement with your grandchild. Be that one person this child can know as ever vigilant for him or her. Like the beacon in a lighthouse, ever strong and supportive, not only for your grandchild but also for your child.” 

“Take this frightening and exciting new experience one day at a time.”

“The thing to remember is what it was like being the parent of a normal child and the overwhelming responsibilities that that in itself brings, let alone a new parent of a child with CdLS. The shock and uncertainty your children feel regarding the future of their baby with CdLS is so overwhelming at first. I found that just being there, listening, offering support and letting them feel your strength means more than you can imagine.”

“Be patient. The grandchild with CdLS will develop at a rate far different than anything you’ve ever seen. Your own children will struggle and wander in many directions until they come to terms with the experience of raising a family that includes one with CdLS.  There are no quick answers, no instant therapies that will solve a problem.”

“For the new grandparents out there, I would suggest they try to keep an understanding relationship with the parents and try to give them all the support they are able to give. And let yourself love your grandchild. It may take time but you can see beyond the label.” 

“My advice would be to accept the child as he or she is, help them learn and grow at their own pace, love them and stand up for them. Always be proud to take the child with CdLS out in public, as you would a normal child.” 

“My recommendations would be to stay the course. Be an example of strength and support for your children and your grandchild, not just by words but by example. I will tell you the rewards are endless. Not that you ever look for a reward but it comes back tenfold from your own child and your grandchild. Your children tend to watch, at least mine do, to see how you interact with their child with special needs.” 

“I had to remind myself that my grandchild was exactly that, a grandchild, and not my child. I had to resist offering unsolicited advice.”

“Learn everything you can about CdLS. Be supportive to the parents. This is your child!”  

“If at all possible attend a function with other CdLS families. Our granddaughter was about nine months old when we attended a function in Tampa and got to meet other
families and children. It was a first-hand opportunity to talk to others about the experiences we had been through.” 

“As grandparents, if you are not involved in your grandchild’s life, it is your loss, and the things you could pass along to your grandchild are lost if you are not there for them.” 

“Each day brings new challenges and hurdles. Remember that a child with CdLS needs you and you may not realize it, but you need them. If you think about the problems that they have and dwell on those problems, it’s not healthy for you or for them. Love them and cherish them every day.” 

“She is my only grandchild. She had nothing to do with her disabilities and I will do anything in my power for her. She’s special and deserves all the love I can give her. I would not trade the time I have with her for anything. There are many special moments and milestones that you need to share with these special children. Spend all the time you can and they will teach you many things.” 

“No one asks to be born with CdLS. Love the child. Your children did not ask for a child with CdLS. Help them as much as you can and let them know you love your grandbaby. Let your children know that they can count on you. Do not be afraid to care for the baby. There has to be a lot of trust; you have to know that if the baby dies while in your care, the parents will not blame you. Take the risk, be involved.”   

“Help people to understand CdLS as it applies to your child. People stare and don’t know what to say. Help them by gently explaining about your grandchild. Education is the key.”

“Spend as much time as possible with that little person. They know so much more than we give them credit for.” 

“Love unconditionally. Each child is different.” 

“Sometimes as a grandparent you can pick up on something your child may miss because he or she is too close. I found that my granddaughter will act or indicate things to me she doesn’t show her parents, maybe because she is too close as well. I give feedback to my daughter and her husband sometimes and they will tell me, ‘That is a good point. We didn’t pick up on that.’”

“I know it is out of love, but sometimes I see parents impose their own fears and anxieties on their child with CdLS by not allowing them to try things, because of their fears of failure for their own child. These children need to learn about themselves by exploring possibilities regarding their own potential. When these children accomplish something, they are so delighted. I tell you, it amazes me how these children have more on the ball than they are given credit for sometimes.” 

“One thing I know as a grandmother of a child with CdLS and a daughter of a mother with Alzheimer’s, these people with special needs know about ‘the touch of love.’ They gravitate to loving and caring people.” 

“We all do the best we can in our own circumstances.” 

Legacy: Reflections of a Grandfather

Norm Winnerman 

“In the long run, there were gifts granted us that would never have been appreciated had this child with this rare syndrome not been born. I don’t think our view of what was, and what was not truly important in life, would have been as focused as it became. I don’t believe that the inner strength displayed by my own child’s family would have been as obvious to them, and to all around them, without the challenge with which they had to contend.

This was a life-changing experience for all of us in this family. I honestly have to say that it is one that I could easily have done without. However, it made each of us better people in a variety of ways: we were strong; we were vulnerable; we were sensitive; we were giving; we were more charitable; we were questioning; we were challenged and we met the challenge; we were supportive; we reached out and we were forever changed. 

While the legacy of this 4 1/2 year old was not material, the spiritual and emotional legacy left will last as long as I live. She had a most positive and wonderful influence on my life from the day she was born. It just took a while to figure it out!”  


I had the privilege of shaping this booklet from the many responses given by grandparents. I was deeply moved by the messages these courageous grandmothers and grandfathers offered those just beginning the journey with a child with CdLS. They have truly become beacons for their own families and now they are lighting the way for others. As the mother of a daughter with CdLS, I know what a difference the involvement and support of grandparents can make. I believe that both grandparents and parents will be strengthened by this booklet. I wish to thank the CdLS Foundation for the opportunity to be a part of this very worthwhile project. 

Margaret Hammond


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