After giving birth to a child with Down syndrome and then progressing a little further on the journey, parents often reflect about how their children with Down syndrome have influenced their lives, their perspectives, and their appreciation for what life has to offer. Expectant moms often worry about the impact on their lives and families. When a baby’s smile and coos are not here yet, sometimes the concerns about the future can be overwhelming. When some moms also have confirmed and possible medical issues on the horizon, worries about these things can sometimes take over perceptions of the future. Listen to other moms describe how their perspectives have changed over time.
See also: Adjusting to a Down Syndrome Diagnosis chapter in our book, “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”
You can also read a diverse range of stories from sixty-three mothers of children with Down syndrome in Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives edited by Kathy Lynard Soper. The sequel, Gifts 2: How People with Down Syndrome Enrich the World, shares perspectives about individuals with Down syndrome as they grow older.
Parents reflect on where they started, where they are now, what they wish they had done differently, and how their child has changed the way in which they view themselves, their family, life, and disability.
Megan, sharing her perspective as a special education teacher and first-time mom of Ellie:
“I am a special education teacher. But when I found out that I would be having my very own child with a disability, I was shocked. I really thought my life would be dedicated to caring for this little person, and that HER life would be okay but my husband and I would be caregivers. Well, we do care for Ellie. She’s little. She needs a lot of attention, perhaps more than the average child her age. And her life is okay, and better than okay. She is fun, and funny. She’s not a burden. She is fun to hang out with and I enjoy spending time with her. I always would have said I valued relationships, kindness, faith, etc. But Ellie has forced me to make sure I really mean that. Ellie won’t make a million dollars. She won’t be a doctor. I get that. And that really IS okay with me. My grief at her diagnosis made me re-evaluate what actually matters to me. I want Ellie to have a strong faith, to be part of a community, to do work that matters and makes her happy. I want her to love and be loved and feel valued. I’m raising a child with Down syndrome in the most well-educated area of the country. She shows me every day how much value she has. Oh, and the added bonus – I think she’s made me better at my job. I try to treat my students the way I want Ellie to be treated.”
Deborah, exploring the ‘Welcome to Holland’ metaphor and having two sons, one with Down syndrome and one without:
“When my second son was born two months early and later diagnosed with Down syndrome, somewhere in the flurry of reading I consumed, I came across the poem “Welcome to Holland” by Emily Perl Kingsley. Ms. Kingsley describes having a child with a disability like going on a trip to Italy but instead you land in Holland. In my state of confusion and numbness the words from Ms. Kingsley helped to give a framework to my feelings and much of my mind racing. The hardest part for me was thinking about what this new member of our family would mean to my first son, then just three years old. I had a mix of fear and guilt for what my older son may have to deal with and for how his life would be negatively impacted. I knew that my husband and I would handle things; we were adults. But for my young son who had no choice in having a sibling enter his life, how would having a new brother and now a brother with a disability affect him? Perhaps part of these feelings was the guilt that any parent may go through when they have a second child. The first child’s life was going along just fine – did they really want or need a sibling? Most parents probably justify the new addition by thinking that even though the adjustment is hard at first, that the older child will be better off because the child will now have someone to share life with and, hopefully, have a lifelong friend even after the parents have died. However, when we found out our son has Down syndrome I wondered would he be able to share life with his big brother and be a friend and confidant? What did this mean for our family? I had a bright, curious, beautiful son – clearly in Italy, and now I had a son unexpectedly in Holland. How could I be two moms in two different countries, speaking two different languages? I ventured into this new place and met some helpful moms and developmental therapists. I did not have answers to many questions but, like Holland, having a child with Down syndrome was turning out to be a welcoming and fine place. Holland is beautiful with remarkable architecture including the Canal district. This land of windmills evokes peace and serenity. Holland is one of the world’s largest producers of flowers. Just the Keukenhof Gardens alone has seven million bulbs planted annually. The amazing museums such as the Anne Frank House are inspiring. Vincent Van Gogh lived in Amsterdam at one point in his life, and the Van Gogh Museum permanent collection has over 200 of his works. I understood landing in Italy from my experience with my first son. Italy also has some incredible sites. Pompeii, the Pantheon, the Leaning Tower of Pisa, and the island of Sicily all offer history, scenery, and unique styles. No wonder Italy is one of the top five countries visited around the world with over 40 million visitors annually. Somewhere along the way, however, I realized and, more importantly, I decided that I didn’t have to stay in Holland or in Italy for that matter and I did not have to choose to blindly travel back and forth the 850 miles between the two countries. The rest of the world is pretty incredible too. I am one mother of two sons and we are connected. Like the Mississippi River a few miles from our house, we as a family flow through life together on all of its twists and turns sometimes quickly and sometimes meandering. I have learned best from watching my two sons together. I see that my greatest worry – for my son having a brother with Down syndrome – has turned into the best gift in life and that his little brother has taught him things I never could. They share an amazing connection that continues to astonish me. I see the understanding, devotion and joy that they have most strongly for each other. They have showed me we speak the same language of love and that we will not be kept in separate places. I have wondered why I feel differently than Ms. Kingsley and I believe it is because of her. Since she and many other parents worked for better opportunities for their child with a disability, there is more inclusion and acceptance. Her work and words had a positive influence on so many people. Through time and travel, I am learning on this journey and I look forward with excitement and anticipation to where it leads instead of feeling like it is already defined by a diagnosis. In addition to Italy and Holland, I look forward to traveling to Shanghai, the Amazon rainforest, Paris, the Serengeti, and much more.
Meriah, discussing her transformation from fearful to fearless after her daughter, Moxie, was born:
“I’m sitting here in La Paz, Mexico, typing this. It kind of makes my head spin and my heart overflow, thinking of how I felt when I was waiting for Moxie. And in many ways, it feels like I was not just waiting for Moxie, my lovely and precious daughter, but I was waiting for moxie: the verb – I was waiting for courage in my life, I was waiting to live with vigor, with verve. And I was scared. Now: I am almost fearless. I laugh when I think of how worried I was about Down syndrome, about how I thought we’d never be able to travel again. I can’t believe I even thought that!! I have grown by choosing to keep my daughter, by having the moxie to have Moxie, by facing all of my fears head on.”
Heather, evaluating her personal growth after the birth of her daughter:
“I’m not sure I have a “before” and “after” shot of myself. I do feel like I know myself better now than I ever have before. My life with my child with DS has shined the spotlight on aspects of me I never knew were there, good things and not so good things. Aspects of myself I wanted to affirm and aspects of myself I see needed to change. I really value personal growth, so I’m really thankful for that!”
Sheva, discussing how she found beauty and light in differences after the birth of her daughter:
“I could write a novel here describing who I used to be and now who I am since I had my baby girl, but for here I’m going to make it short and sweet. Before I had my baby we had a great life, great kids , great home, great husband, and I can honestly say I walked around in those days with my eyes closed. Since Rozie it is like a light was turned on and all I can see is beauty I never knew was there. A beautiful world that is so full of light and everything wonderful, I am so thankful that such little package that looks a little different and even acts a little different could light up our lives every day.”
Christine, talking about her evolution as Olivia’s mom and the development of her focus beyond her career:
“I am a very different person than who I used to be before having my Olivia. And I am even better. I was always a good person mind you, but now I’m even better. I was the person that was into my job. Not overly into it, but definitely into it. But I longed for something more. I didn’t know what that was, but I knew I needed to find it. Then I got pregnant…then I got the pre-natal diagnosis…I. was. terrified – period. I wasn’t all that into having a child – figured if it happened, great, if not then no biggie. I knew nothing about child rearing. Nothing! And now almost two years after Olivia was born…holy cow what a difference. I am a softer more caring person and I like it! I love being a mom. I love helping her learn stuff. I have become an advocate for people with Down syndrome. I speak out more. I understand child development. I am a totally different and better person for having my daughter with Down syndrome even though I didn’t see it when I was pregnant with her. So far it is has been a better experience than I could have imagined!”
Krista, explaining how she fell in love with her son, who was her second child:
“It’s hard to remember who I was before Tim came into my life. I know that I was not sure of myself or of what I wanted to do in life. I had gone through a couple different jobs but really didn’t feel like I had a purpose. I was Elisabeth’s mom and was thrilled about that but something was missing. When we found out we were having a boy, everyone told us how perfect this was: you have your girl and now, a boy! Any thought of a speed bump was briefly dismissed, we had had a quad screen and monthly ultrasounds and he looked great! He was constantly kicking me and I told everyone I wasn’t going to let him live that down when he got older. When we got the diagnosis 3 days after he was born, the doctor said the preliminary results were so strong that we didn’t need to wait for the final results: he had Down syndrome. After calling my husband to tell him, I cried a really hard lose-your-breath type of crying alone in my hospital room. I don’t know how much time passed but gradually I realized this was the reality and this was going to be ok. And this was my purpose. Somewhere came a feeling of purpose. I was meant to be Tim’s mommy. I went down to the nursery and the nurses took him out of his isolette and placed him in my arms and I fell in love. He was so beautiful. And more than ever, I wanted to protect him and never let him go. My mornings now start with a big bear hug from my 5 year old, who has amazed me more than I could ever have imagined. I have changed because of him: I don’t take things for granted, I’ve learned to be a little more patient and a little less judgmental. Tim has made me be more social and less of a wall flower because of his lust for life. He wants to dive into life and I have to remind myself not to hold him back because of my own fear. He is truly amazing. Don’t stop imaging what your child will be or do just because of a diagnosis. Every kid deserves those dreams.”
Nancy, mother of 4, discussing how her youngest daughter reaffirmed the appreciation she already had for people with disabilities:
“I was a child who grew up in an extended family that had many members with disabilities and friends with disabilities. I was not “taught,” but I learned, that people with disabilities are part of the fabric of humanity, valuable and happy individuals despite what others may think they see. I was a teenager who learned the value of community service in volunteering. I was a bright student who excelled in law school. There I learned to research, to write, to advocate, and to speak in front of an audience. I learned about the fallibility of people, including the medical community. I learned to question, to probe, and never to accept things at face value. I was a mother who knew the joys of parenting. I was a mother who learned through first-hand experience about stress, rare medical conditions, and the imperfection of doctors. I was “put through the ringer” long before my child with Down syndrome. As a result of my experiences, I also learned to appreciate the expertise and compassion of the medical community. I was a mother who saw my children squirming in the ultrasound screen, the same children who later nursed at my breast. I learned to appreciate this continuity of life. I do not feel Gabriella has changed me. I feel like my life experiences all along have prepared me to be her mother. When I received questionable blood results, I felt confident: “Everything will be OK. And if it isn’t, it’ll still be OK.” After receiving amnio results and fetal echo results, I plunged backwards. It all unraveled. How could that happen? But I inched my way back, and after awhile I was once again the person I was. A person who appreciates and respects diversity. An advocate. A skeptic. Someone who gives back. The person I was always meant to be: a mom of a little girl who is the person she was always meant to be. I feel like I have a living, breathing, giggling, dancing, and now karate-chopping example of what I believe and appreciate with me to reinforce my outlook.”
Amy, gives a detailed description of her second daughter’s diagnosis, cardiac surgery, and the impact on her other children and her marriage:
“In the summer of 2003, Kevin and I were joyfully anticipating the birth of our second baby. When I was 19 weeks pregnant, I went in for my first ultrasound. The tech seemed abnormally quiet, and when I asked what the baby’s sex was, she asked me twice if I was sure I really wanted to know. After the ultrasound, my doctor said there might be a problem with the length of the baby’s limbs and that they’d run the tape again later that night to check. No mention of what this might mean. The next morning, she called me and said that the measurements were within acceptable limits but that the nuchal fold was large and that was a dominant marker for Down syndrome. Basically, there was now a 1 in 40 chance that the baby had Down syndrome based on that marker alone. We told the OBGYN that we would not terminate, but that we did feel that we had to know for sure. So, we did the amnio and waited an interminable 2 weeks for the definitive results. That last day, I had lunch with a friend in CT and was in such a state of worry because I hadn’t heard anything yet that she convinced me to call as soon as I got home. I actually didn’t wait — I was in the car driving on I-84 when the doctor got on the line and told me they wanted me and Kevin to come in to discuss the amnio results. “Are you kidding,” I asked? “The only reason you’d say that was if there was a problem. Please just tell me now.” She did, and I felt my world crashing around me. I had a toddler in the backseat, and I was crying, confused, and scared out of my wits. I do know that I heard her remind me that we’d said we didn’t want to terminate. That was like a lifeline. I reminded myself again that we wanted this baby. I had to do a lot of reminding myself over the next few days. We saw the genetic counselor at the hospital the next day, and she was full of statistics about all the medical and developmental problems that kids with DS have. Looking back on it, I realize that if my baby had had all those problems that were listed, she would probably not have lived. The one helpful piece of advice she gave us was to contact the Down syndrome clinic at Children’s Boston. I did that the very next day, and that one conversation changed my entire life. I spoke with an actual parent, a parent who clearly adored her little boy. She was a single parent as well, and had had this child at age 23. Well, if she can do it, perhaps I can after all, I thought. She explained the developmental and medical conditions that affect some (not all, she reminded me) kids with DS in a lot more detail, and helped put them into better perspective. I met with her over coffee at the hospital a few days later, met Dr. Allen Crocker, a leading pediatric Down syndrome specialist, and found new hope. Two weeks later, we had a fetal echocardiogram because of the large incidence of heart defects in the DS population. Turned out that our baby had a defect that would need to be surgically repaired. However, we were reassured that this surgery would probably wait until she was at least 2 and that the surgery was 99% successful if done at a leading cardiothoracic center. That was certainly a relief, but I, in all innocence, asked again if surgery was definitely the fix and wanted to know if any children with this problem ever needed a heart transplant. I will never forget what that cardiac fellow said: “No, surgery will fix it. And of course, a transplant would raise the ethical question of whether or not a child with Down syndrome would be a candidate for a heart.” That second statement was totally gratuitous, totally inappropriate, totally cruel. How dare she imply that my child, my wanted child, wasn’t good enough to get a heart simply because of the presence of an extra chromosome? It was probably at that moment that my maternal protective instinct came into full gear. I was going to make sure that this little girl was loved, was appreciated as an individual, and was encouraged to be the best person she could be. Second only to that was a newfound desire to completely wipe out any such sentiments about the inferiority of people with DS from the face of the earth (A slightly more challenging task, I’ll admit.) Abigail was born on October 24, 2003. She was big for a baby with DS — a whopping 8 lb, 4 oz. Those first few months were tough — she had jaundice, she had the smallest ear canals our pediatric ENT had seen in 10 years (including his other patients with DS), she wouldn’t nurse effectively, and we bounced around from one appointment to the next. However, Abigail was such a sweet baby. She rarely cried and was easily comforted. She had the bluest eyes, with these gorgeous Brushfield spots of white in the irises, which to this day still makes the blue of her eyes shine even brighter. Her big sister Emily was smitten from day one and was such a big help. I will forever be thankful for the deep love that they share. Emily took on the role of big sister tutor like she was meant to do it. She helped with therapy sessions, she read books to Abigail, she danced for her and sang her songs. Now that Abigail’s 5, Emily still looks at all the projects she brings home from school and tells her how pretty they are or congratulates her for printing her name. Abigail crawled at 12 months, 1 week. It is that last week that I look upon now and laugh at – I feel like it was her way of telling me to relax, that she WOULD do all the things that we want her to be able to do, but that she was going to do them when she was ready, and not a moment before. I made a “pact” with myself the day she crawled – I would not put so much stock in timeframes and averages, and I would take every milestone as it came, when it came. Abigail had open heart surgery when she was 3. Scary experience, wonderful team at CHOP, happy result. We were all, including the grandparents, crying when the doctor came in to tell us she was ok. We were back home 2 days later, and the first thing Abigail did when she saw her sister was say “Emily, happy” and give her a hug. The Gift of Abigail has hit us in many ways. First, there’s her unavoidably infectious personality. She has the best laugh in the world, and we hear a lot of it. She is also incredibly empathetic, and she is constantly petting Mommy, Daddy or Emily, asking us if we’re ok if we get a boo-boo or seem sad or tired. She gives hugs with her entire body – -a feat that you can only appreciate if you’ve ever hugged a child with Down syndrome — the flexibility in their joints just helps them mold their little bodies into yours in the most giving way. She loves school and is looking forward to going to regular kindergarten next year. I see her with her typical peers, and she is so excited to be with them. That was led to my strong belief in inclusive education. I see how the other kids react so positively to her and how happy she is with them and I can think of no good reason at all to keep them apart. Abigail takes great pride in her accomplishments, and we do, too. I see how Abigail’s presence in our lives has helped us appreciate the gift of Emily in new ways as well. Not only is she the same smart-as-a-whip child with the great temperament that we always knew she was, but she is also one of the most caring children I’ve ever met, and one of the most mature for her age. These traits have been fully developed because of her relationship with her sister. I can’t wait to see what she does as an adult — I am so proud of her. Abigail has also been incredibly important in strengthening our marriage. Kevin and I are completely in sync with what we want for Abigail and usually agree on how to get there! He has been so supportive as I delve into a more active role in the special needs and inclusive education communities here in NJ. He is an excellent father to both of our children, and I can’t imagine my life without him there beside me as we face life’s struggles and life’s rewards. He has given me the two greatest rewards I can imagine in my daughters Emily and Abigail.”
Sarah, talks about the birth of her son transformed her expanded her definition of disability and intelligence:
“Having Adam in my life has changed me profoundly. Prior to his birth, I knew I had been more fortunate than most people by long shot. I was successful professionally, had a happy family life and had a fairly clear plan in my head for the next 20 years or so. I believe everybody has some prejudices but not everybody owns up to theirs. My biggest prejudice was toward people I considered dumb. I was something of a smart snob and valued higher education a little too much. When Adam was born and we quickly learned that he has Down syndrome, my world turned upside down. I grieved this more than many people I’ve come to know since then. The gift for me in all that struggle was that it forced a lot of introspection and it caused me to question all my fundamental beliefs, especially how I judged and valued others. It led me to consider my prejudice against dumb people and I realized that what I find frustrating in others isn’t lack of intelligence but the choice not to use the intelligence one was given. I can honestly say that Adam uses all he has more than my other two children do. I am proud of them all but I absolutely glow when I talk about Adam. So great were my misconceptions about Down syndrome and disability in general, that my entire professional focus shifted after Adam’s birth and I’ve spent the years since working to educate healthcare providers so that they can learn what I learned. My life has changed in the ways our lives always change when we have a child. More love, more work, great joy, some sorrows, some worry. The additional gifts have been the changes in me, my work, the people I’ve had the opportunity to know. I’ve also had to learn more patience and learn that while planning is still beneficial, it doesn’t always work. I’ve learned to form contingency plans and to be more flexible. I’ve also learned to live in the moment a little more and not always have a plan for everything. Soon after Adam’s birth, I wondered if this was my come-uppance or my payback for having led such a charmed life before, although that really doesn’t fit my belief system. I don’t think everything happens for a reason. Sometimes things just happen. For Adam and for me, Down syndrome just happened. I’m so glad. I truly can’t imagine how different my life would be and how different I would still be if it hadn’t. So maybe I’m still living a charmed life.”
Mark, sharing his perspective as a dad who initially feared how others might treat his daughter but later learned to appreciate the thoughtfulness of others:
“When our daughter was born, my wife and I wept for what we thought would be a lifetime of taunts and ridicule by others. As a result, we became more sensitive to those who were differently-abled and more aware of the words we use, i.e. no longer using the “r”-word to describe something or someone as stupid. Our daughter is now 6 and we have realized how off-the-mark we were, at least for our little girl. Those early fears of teasing and name-calling have yet to be realized. Instead, we have been pleasantly surprised at how comforting, compassionate, and loving all of her caregivers have been, her teachers, her classmates, and complete strangers who go out of their way to tell us how beautiful she is. I’m not trying to idealize this situation, but truthfully this has been our experience. How our daughter has made me view disability is informed by what a good friend, and fellow dad of a child with Down syndrome, shared at one of our monthly DADS outings. We joke that these get togethers often become “therapist fantasy baseball” where we compare notes on whose a better speech therapist, what is a better technique for fine motor skills, etc. My friend, however, at a pause in the conversation of what milestones are children were striving for, said simply, “you know, sometimes, I just sit back and enjoy him for the little dude that he is.” The Lebowski-speak notwithstanding, the wisdom of that statement changed how I viewed by daughter and others with disabilities. No longer were these individuals who were trying to meet “typical” milestones, or “fit in.” Rather, they were people unto themselves and should be respected as such.”
Pam, talking about how her son with Down syndrome has given her amazing experiences and an increased capacity for love:
“Before kids, I was a person who kept wishing that I could do something great with my talents (although I wasn’t sure what that was yet). Then I found out while baby was in utero that I was going to have a son with Down syndrome. Well, my world flipped over and then I realized, after lots of reading and soul-searching, here’s my chance! I was going to have some amazing experiences with him! There would be the good, the bad and the really scary. When I saw his face for the first time, I was in love! The love I feel now is infinitely more powerful than anything I could have ever imagined back then! He really was just a baby- a real, wonderful, sweet smelling, cuddly baby! He wasn’t scary at all! (That’s what I kept telling my mom) I wish I could help you to not worry about who you will be. Instead, I want you to be excited for the love you will have! It really is amazing.”
Missy, describing how her third daughter helped her develop an even greater appreciation for diversity and an appreciation for her good luck:
“I’m a person who believes that there is a plan, and that there are reasons for everything in life, but you don’t always see them when you are going through them. I’ve always been drawn to the most interesting people in the room – not the most typical – the ones I consider most interesting. I dated a guy for 7 years who is still my best friend. We broke up when he realized he was gay. At the time it broke my heart. But guess what? He grew up with two foster brothers (and actually a foster sister) who had Down syndrome. A voice (I believe it was God) told me when he told me what was going on with his life that I loved this person and my life would not be right if I hated him because he was gay, and if that was a part of him, I should continue to love him. Honestly, I think people thought I was nuts for that – he was my ex-boyfriend for goodness sake and he wanted to date boys – I should HATE him, not love him. But I went with my heart and swallowed my pride. I’m glad to this day. I have a nephew with Muscular Dystrophy. My cousin’s little girl has DiGeorge syndrome. I have a friend with a little boy with William’s syndrome. I have a friend whose child had neuroblastoma (cancer of the stomach discovered at 8 months old.) A neighbor has a child with CP, and another has a little boy who is autistic. Disabillity is, if you can imagine, “normal” in our lives. But, when I got the odds that Violette had a 1 in 16 chance of DS, I was shocked. I thought it would be the worst thing in the world. I had always considered myself the luckiest, most blessed person I knew. For about 3 weeks after she was born I questioned that. But I went back to my favorite four words of the Lord’s Prayer “thy will be done” and realized that a person as lucky as I was, as blessed in this world as anyone I’ve ever met, wouldn’t be let down. And I started to think about things. Every day, more and more I realize that Violette being that 1 in 16 was just another way of God telling me how much he loves me. And I know that having “the 1″ is indeed the lucky one – not those other 15 who don’t have someone like her in her life. I can’t say that she has changed me – I’m still fundamentally the same person as I was before I had her. I can say, though that she’s totally reinforced what I thought before I had her – I am the luckiest person in the world.”