Friends and Family archives

Grandparent Stories

October 2, 2013 in Friends and Family

We received top notch grandparent stories for our Grandparent’s Day contest and wanted to share three of those stories with you. It was nearly impossible to choose a winner among these beautiful stories because each of them is particularly meaningful in different ways — demonstrating love, sometimes sacrifice, commitment, vision, and determination. So, all of them are receiving a gift pack of books, and our first place winner, Stacey Hopper, is also receiving a strawberry gift basket from Mercier Orchards for the amazing grandparents in her life. Thanks again for all who participated!

From Stacy Hopper (Mom):

“I was 20 years old, married for less than a year and in another state, when we found out our firstborn was going to have Down syndrome. Obviously shocked and scared, I called my mom and told her the “bad news,” and she and my fathers responded, “Okay, so what’s the bad news?”

I kid you not! My family rallied around us and researched, joined groups, and called daily with encouragement and hopeful words.

My mom came out when Josephyne was born and stayed til she was 18 days old. Sadly she had to go back home before our girl came home, but she was with her everyday until she left!

When our baby was 5 weeks old, my husband was deployed to Iraq, and Joey Grace and I were all by ourselves. My family didn’t like that so my dad and two of my three brothers drove from Missouri to Coastal North Carolina to pack us up and bring us home while he was deployed. My dad had only seen her in pictures until they pulled up in front of my house … and when he saw her for the first time, it was amazing. A complete and utter love that knows no bounds and that is palpable to anyone around. Our girl is now 10, turning 11 in November, and her absolute best friends and biggest champions would be my amazing parents. Involved in every aspect of our lives, they always make sure love and time spent is equal among their 10 grandchildren but there is something between my daddy (Papa) and my girl (Joey Grace) that no one will ever understand: true and honest love that is never ending.

I come from an amazing and large family, and no one has ever treated her any different than they would any other child, and that is all due to my parents examples in our growing up and in their reaction to our amazingly genetically enhanced girl.

Low you Nana-Bean and Papa-Bean!”

Amy Allison, the Executive Director of the Down Syndrome Guild of Greater Kansas City, which is Stacy’s local Down syndrome organization, says:

In 2002 DSG received a phone call from a grandpa to be indicating his daughter was living in another state and was just informed she is carrying a baby with Down syndrome. Grandpa was concerned and anxious to get educated about the condition and the best ways he could support his daughter and granddaughter to be. I met with Grandpa within a few weeks of his call and provided him up-to-date accurate information to help him prepare. He called me a few months after his granddaughter was born to say that his son in-law was being deployed and he was concerned, so he was moving his daughter and granddaughter to Kansas City to provide help. As grandparents go, he was the biggest cheerleader and supporter I have seen. Always proud and always looking for ways to get engaged with the DSG. I wasn’t surprised at all when Stacy’s story was selected as a winner for the DSP contest!

From Christy Pate (Mom):
My kids have THE BEST grandparents!

When my loved one with Down syndrome was diagnosed with AML (leukemia), we had one week to get everything in order and spent most of the next 6 months in the hospital. Since he was so young and exclusively breastfeeding, we decided it would be best if I was with him the entire time. We were able to accomplish this because Grandma set her life on the table, and stepped right into mine. She basically moved into my house and ran my household which enabled me to stay at the hospital for 6 months and my husband to continue at work without any loss of time, pay, or vacation. My older kids did great because they didn’t have to become latch-key kids or feel neglected. She was even able to manage the complications of a high schooler and a homeschooler.

I could never have been away from my home, my family, my older kids, etc. without the reassurance my mom provided by being with them. I honestly don’t know what we would have done without Grandma! My dad was behind it and gave his full support saying, “where else would she be?”
From Vickie Wood (Grandma):
I have been a special education teacher for over 20 years. It is my calling, and I love what I do. I am also a very proud grandmother of 11 grandchildren whom I love with all my heart. That said, I have to ‘fess up’ that my precious granddaughter Darcie is always going to hold a little extra special piece of my heart. Darcie was born with the rare chromosome difference Mosaic Down Syndrome. She also arrived with congenital heart defects, and we recently found out that she is profoundly deaf. Darcie has already overcome many challenges including jaundice, open heart surgery, slow growth, and feeding and digestive difficulties, but she has proven herself to be a fighter as well as a precious sweetheart full of smiles and sunshine. Our family has been enriched by her presence in our lives, and she is already changing perceptions about people with different abilities in very positive ways. She is fiercely loved and deserves all the help, encouragement, and protection we can provide. My daughter and I will be signing up for a course to improve our skills in American Sign Language so we can teach Darcie to sign and help others learn to sign so they can communicate with her. I just know that she has a LOT of very important things to teach the world!

Happy Grandparent’s Day

September 6, 2013 in Friends and Family

This week we’re celebrating Grandparent’s Day by featuring the stories of those who have grandchildren with Down syndrome. When new and expectant parents learn that their baby has Down syndrome, grandparents are sometimes unsure about the best ways to offer support in the beginning. This is why we offer the booklet, “Your Loved One Is Expecting a Baby with Down Syndrome” to help grandparents and other friends and family understand Down syndrome better and know helpful things they can say and do. So, between September 6 and September 13, anyone who donates $15 or more to the Down Syndrome Pregnancy program will receive a free, signed copy of the printed book to keep or share with friends, family, or a doctor who might find it useful.

Once the news settles in, and especially after the baby is born, grandparents often become a tremendous source of strength and joy: helping with laundry during those newborn days, cheering loudly at baseball games, and eating mushy roast beef at the elementary school Thanksgiving lunch. Whether near or far, grandparents can be an important influence in the lives of children, so we want to celebrate them this week and hear your stories. So, anyone who emails us a photo or story or posts a story in the comments of this blog post by September 12 will be entered into a drawing for a gift basket with strawberry jelly, salsa, syrup, butter, and muffin mix from Mercier Orchards in the Blue Ridge Mountains. Your stories help other grandparents know how to support their children and how to enjoy those precious moments with their grandchildren.

And look here for a list of other great grandparent resources by columnist (and Lucy’s grandma), Beverly Beckham.

Below is a story from my own mom, Bernice Hall:

When I found out that my youngest daughter was expecting her first child, I was overjoyed. The day of Andy’s birth was eventful. I was overcome with joy. However, that joy was short-lived. We were told that he had swallowed meconium and would need to go into the newborn intensive care unit right away. It wasn’t long before we were told that the doctors suspected that Andy had Down syndrome. My first reaction was to deny that my 23-year-old could have a baby with Down syndrome because I thought that only happened to older women.

The genetic testing confirmed the doctor’s suspicion. At that point, I had to say goodbye to the baby that I thought we were having and welcome this precious little boy for the beauty of who he was. Embracing that reality came quickly and with much love.

One memory that will stay with me forever involved a riding lawn mower. When Andy was about three-years-old, my husband bought the mower. He couldn’t have purchased anything that Andy would have loved more. For a couple of years, he just rode with his Papa. Then, he was allowed to steer. Andy put more mileage on that machine just riding for fun than Papa did cutting grass.

During that time, we took him to an animal park. Our means of transportation around the park was a large tractor that pulled a flat bed covered with straw. Andy was so excited that the attendant allowed Andy to sit with him. At some point during the ride, he allowed Andy to steer. He was able to maneuver through an open gate without hitting anything. The smile on his sweet face was priceless.

Andy continues to amaze me with his computer skills and his photography talent. He patiently helps me with my computer. Best of all, I love when he puts he arms around my neck and gives me a kiss on the cheek and says, “You’re the greatest Mawmaw in the world.” Of course, the love that we share just grows stronger.

Positive support from friends, family, and health care professionals

August 26, 2013 in Comments, Friends and Family, Medical Provider, Support

Katie Ryder with her grandmother Lona Kewley

We would like to hear from both experienced and expecting parents about the wonderful support they have received from friends, family, and health care professionals. We spend a great deal of time helping parents cope with negative or stinging comments, mainly because we do not have built-in coping mechanisms for those unexpected events. Sometimes when in the stress of pregnancy post-diagnosis, a negative comment can send us reeling, and may actually drown out the many positive comments we hear.

However, there are extraordinary people out there. People who rise to the occasion and give a piece of themselves to give genuine, loving support. Focusing on their words and their actions, their support can help build our confidence and reinforce the knowledge that the world is a welcoming place for our children.

Sometimes that support comes from friends and loved ones who dive in to learn more about Down syndrome and the available resources so that they understand our children a little better and how to help them achieve their potential. Other times that support comes in the form of friends visiting the hospital and bringing blankets, stuffed animals, and candy to the Newborn Intensive Care Unit. That support can also include comments that welcome our children into the world, like the nurse who says “Congratulations! You’re baby is precious,” or comments that shape our understanding about disability, like a friend who shares, “My cousin has Down syndrome, and she’s an important part of our family. We love her.”

Please share in our comments the words, actions, or attitudes of those around you who gave the best of themselves and in turn helped you cope or look forward to a bright future. If you are on Facebook, you might also want to post your comment to your Facebook status and link to this blog post. Or post a thank you (sample linked below) in your Facebook status.

Booklet for Friends and Relatives: HERE
Sample thank you letter to the person you appreciate: HERE

(Note: We recognize that some things that bring comfort to some people may not help others because of the diversity of the personalities and beliefs of our expectant parents. For general guidelines, see our Relatives booklet linked above. Supporters should tailor their comments and support to match what they know about the personalities of the expectant parents.)

What will baby need? (It’s a Baby Shower!)

July 31, 2013 in Friends and Family, Future

Katie Ryder with her grandmother Lona Kewley

Experienced moms, help our expectant parents with their baby registry! What items did you use during infancy that will be a big help for new parents of a baby with Down syndrome? Expectant moms, ask follow-up questions, or talk about the supplies you have already.

Lets get the list started with a few of our “must have” items:

Two products for congestion are an absolute must, the NoseFrida, otherwise known as the snot sucker (I know, it looks gross, but trust us), and saline mist.

And since research shows the benefits of sign language for our kids, put Signing Time videos on your list. The videos are fun, the songs are catchy, and your other kids will enjoy them too.

Finally, every parent of a child with Down syndrome should have a copy of Will Schermerhorn’s DVD “Down Syndrome – The First 18 Months.”  Check out Will’s website to order the film.

There are many items that can be specifically helpful for babies with Down syndrome, but experienced parents of infants with Down syndrome also emphasize that they need or want the same things any baby needs. So, please help us by sharing items you found particularly useful for a baby with Down syndrome and also those things you found generally helpful, wonderful, beautiful, or clever.

We have lots of great suggestions below and would love to hear more!

Telling people your unborn baby has Down syndrome

September 13, 2012 in Friends and Family


A decision to share the news can be a difficult one for some expectant parents. Some tell without a plan, while others craft their message. Did you decide to tell loved ones? How did you share the news? When did you tell, and what did you say? What the reaction positive? What do you wish you had done differently? If you have a group e-mail, please share it with other expectant moms.  DownSyndromePregnancy.org has a sample e-mail for you to copy and edit to suit your circumstances and personal reflections.

Update: We also have a booklet for your loved ones. You can download if for free or order a copy from Woodbine House.

Download here: http://downsyndromepregnancy.org/wp-content/uploads/2012/02/DSP-Loved-Ones-booklet-Ver2-20120220.pdf

Purchase a paper copy here: http://woodbinehouse.com/diagnosis_to_delivery.asp

(This post originally appeared on October 1, 2010.  It is worth a revisit for our newer readers, especially with the update.)

Happy Mother’s Day 2012

May 11, 2012 in Friends and Family


“A Family’s Love on Mother’s Day”
This weekend we will celebrate Mother’s Day. For our expectant mothers, this can sometimes be a bittersweet time. They have so many worries, and have not yet experienced the rewards of parenting a child with Down syndrome. They often hold on tight to our words of hope, and the vision of a future as happy as most of ours. They may have moments of sheer happiness in their pregnancy, and some fully reclaim that joy of expecting. One of our moms from the Baby Center DSP discussion board, Lindsay, sent us this picture of her family taken by her sister-in-law which captures that excitement, the anticipation of a family made complete by the addition of a little one with Down syndrome.

Bloggers, will you share your Mother’s Day posts with our expectant moms?

(Also, this photo is in a “Mommy and Me” contest – vote for it if you wish. Go to wncy.com/, then go to Mommy And Me Photo Contest under quick links. Register and then go to your email to confirm. This picture is on page 3, picture 28.)

Dealing with People and Comments

April 13, 2012 in Comments, Emotions, Friends and Family

Part of putting yourself “out there” with the news is that you then have to deal with comments from the people you know. Most people mean well, but sometimes things sound “off” to an expectant parent. What kinds of statements make (made) you uncomfortable? Did you respond? Do you wish you had said something different? What were some of the best comments, and how did they help your state of mind? Aside from the comments, are you having any issues dealing with people around you – are you having trouble connecting?

Experienced parents, do you have any useful strategies for our expectant moms?

(Originally posted December 2010.)

Booklet “Your Loved One is Having a Baby with Down Syndrome” now available

February 10, 2012 in Friends and Family


Our booklet “Your Loved One is Having a Baby with Down Syndrome” is now available for free download. We hope this booklet will be helpful to all people who know someone who is awaiting the birth of a baby with Down syndrome. Expectant parents, we hope this will be useful to you as you approach your friends, your parents, and your other loved ones about the news of your child’s diagnosis.

Thank you so much to the wonderful team that made this possible, including the authors Nancy McCrea Iannone, Stephanie Meredith, and Amy Geoffroy, as well as contributors Beverly Beckham and Herbert D. Hinkle, Esq. Dr. Brian Skotko was kind enough to provide medical review and suggest edits. Dr. Maria Iannone suggested significant changes to the original draft of the booklet, while Richard Kline, Missy Skavlem, Heather Trammell, and Sarah Hartway all provided editorial suggestions. Vincent Iannone spent many hours producing the booklet, using Justin Meredith’s original design work as inspiration. Gracias to Mary Dressel and Ana Lorena Beltran for translating the Spanish language resources page. Thank you all.

Because a picture is worth a thousand words, thank you Kelle Hampton for asking readers for pictures. We hope to use many of these photos in future publications and blog posts, but in this booklet we see gorgeous photos from a collection of her readers. Thank you so much all parents and relatives who sent in beautiful photos. Thank you also to Kelle Hampton Photography, Conny Wenk Photography, and Corie Green Photography.

Lisa Lilienthal will be helping with publicity so thank you Lisa as well. Although it may take a month or so to produce the quality printed version, Woodbine House has once again volunteered their distribution services. Thanks to all of you. You have each given a part of yourselves to help future families.

Download the booklet “Your Loved One is Having a Baby with Down Syndrome:” HERE.

Preparation

January 18, 2012 in Birth Plans, Breastfeeding, Friends and Family, Health Issues, Medical Provider, Support

Many of our expectant parents agreed to diagnostic testing in order to “prepare” for having a child with Down syndrome.  Yet post-diagnosis they may not be sure exactly what they should be doing to prepare.  For those of you who had a prenatal diagnosis, share what steps you took.  For those of you who had higher chances but skipped the amnio, were there things that you did to prepare “just in case”? For all of you, are there things you wish you had done? Are there things you wish you had not done?

(Original post December 2, 2010)

Words that hurt: Asking family and friends to use kinder words

March 9, 2011 in Comments, Friends and Family

Many expectant parents become very sensitive to words they hear, including slang such as the use of the R-word. Many parents are hurt and unsure of how to handle this. If they confront their loved ones, things can get very awkward. If they say nothing, they may feel disappointed in themselves for not sticking up for their child. This is new social territory for you, and it can be very confusing. DownSyndromePregnancy.org has a sample e-mail for you to copy and edit to suit your own circumstances. For our parents who have dealt with this situation, will you share your experiences?

(This post originally appeared on October 5, 2010, but it is worth a revisit, especially since last week highlighted the Special Olympics’ efforts to “Spread the Word to End the Word.”)

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