Reclaiming Joy

Our book, “Diagnosis to Delivery,” addresses the emotional impact of diagnosis, and, for most expectant parents, this is an emotionally volatile time. However, many expectant parents progress forward to the extent that they are excitedly anticipating the birth of their baby. Sometimes there are parents whose difficult days were few or barely there, and others who have left those days behind. Reclaiming that joy can be a process, but most parents fall head over heels in love with their baby with Down syndrome as they get to know them.

Our Resources

See also: Adjusting to a Down Syndrome Diagnosis chapter in our book, “Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome.”

Parent Stories

Reflections from parents who felt happy, hopeful, and excited about the birth of their little one with Down syndrome:

From Amy, talking about how reclaiming joy was a process and how her daughter’s birth was the turning point:

Looking back on my pregnancy, reclaiming joy was a process. After our diagnosis at 22 weeks, things seemed pretty bleak for a while. However, I would feel the baby move, and with every ultrasound picture given to me (and there were lots towards the end when they were monitoring closely), it looked like she wasn’t really that much different from my other daughter, and that made me feel a lot better.

Trying to be positive and telling others that we were excited about the baby was also helpful. Friends and family members generally took our lead and began making nice comments about getting to meet the baby. My mother and mother-in-law also threw me showers, and that made me happy and grateful.

But I think I was not fully happy until after my beautiful daughter was born. Then, it didn’t seem to matter that she was a bit different, and it didn’t seem to matter that we had more doctors’ appointments to go to, I had her.
Seven years later, she brings us such joy that it’s hard to express.

From Christine, telling about how she moved from grief to joy:

It’s definitely a process! I went through pretty extreme grief for about three months when we found out at 13 weeks. We weren’t sure if we were going to keep her or give her up for adoption. Finally when we decided to keep her then we started to get excited, but there was a still a part of me that was terrified (also my first child so I know that added to it). Also feeling her move and seeing all those ultrasounds pics was the best!

I know it sounds so crazy now, but I look back on that time and think I missed a lot. My baby brings me so much joy every day that it is hard to express!

From Heather, describing how she started to experience joy when those around her allowed her to process and share her honest emotions and then when she named her baby:

Surrounding myself with people who just let me feel what I was feeling was a great first step in reclaiming my joy. I didn’t need someone telling me how to feel (“They’re such sweet children!”) or how to think (“You’re the best person for the job!”) was not what I needed. Once I felt respected and heard then I was able to move forward with steps to joy like baby showers, registering etc. My best second step was giving our unborn child a name. Not “her” or “fetus”. Our daughter had a name and it was specially chosen with significant meaning. My last step in reclaiming joy was to claim my right to share the news with who I wanted to, when I wanted to and how I wanted to. When everything else was out of control, just exerting that little bit of control helped me feel confident and able to see joy in my situation.

From Megan, saying that maternity photos helped her feel joyful:

One huge thing – Capturing the joy we reclaimed with professional, beautiful maternity photos. Our daughter may never know how hard her diagnosis was for us (not only Down syndrome, but heart defect, intestinal problems) but someday, she will know how much we loved her before she was even born!

From Erin, describing how she moved from painful heartache to joy when she felt her baby kick:

After finding out around 15 weeks that our son would in fact have Down syndrome I felt tremendous grief. It felt like a death initially. Like I was losing the child that I “thought” I was going to have. The sadness would hit me in these intense waves, and I would just ache all over and wonder how I was going to make it through it. Then one day as I felt this wave of sadness come over me I felt the baby kick, and he kicked me hard! At that moment I felt like he was telling me to “snap out of it, get it together Mom. I am still here, I still need you and I love you.” I sat there, wiped those tears from my eyes and realized, I loved this baby, no matter what, and I was going to enjoy every moment of this pregnancy. I had another emotional wake up call to reclaim the joy in the pregnancy when I had an incident where I thought I was losing the baby. I was rushed to the L&D triage with some pretty intense bleeding. I was devastated beyond belief. I just kept saying over and over again, please don’t let me lose this baby, please. Thankfully everything turned out okay, and I realized how badly I wanted this pregnancy and I wanted this little boy growing in my belly … all 47 chromosomes of him!

From Danielle, talking about the practical steps she took during pregnancy to feel “normal” again and how she and her husband were gracious with each other in processing the information:

I remember being angry at how I felt like my “normal” pregnancy had been stolen from me. I felt like all of the fun parts of pregnancy were constantly being overshadowed by some looming cloud of fear and uncertainty … the day we found out we were having a boy was the first day I heard the words “nuchal fold.” The day we were told that there was a 50% chance our son would have Down syndrome was the same day I felt him kick. Even the small things I tried to enjoy about pregnancy I felt like I had to keep to myself at times because my husband and I were on different grieving timelines, and that was really difficult. I found a few things helpful … number one is talking about it. My husband and I agreed from the beginning of this journey to be gracious towards where we were in our process, but to always be open and honest and intentional about telling each other how we were feeling. I talked to my mom, sisters and a few close friends as well. Verbalizing my fears helped me conquer and dispel them. Reading helped me do the same. I had to know when to walk away from the computer, and I stopped reading halfway through my third Down syndrome parent memoir. For me, information was power, and each blog I read and YouTube video I watched made Down syndrome a little less scary. I also forced myself to do some of the normal pregnancy things even when I wasn’t feeling up to it. I’m a firm believer in the fake it till you make it approach to difficult situations. Sometimes when you go through the motions, the sentiments will follow. I researched the latest new baby gadgets, started a baby shower pinterest board, and launched into some hardcore nesting. It helped me remember that I am having a baby, not a diagnosis, and he is going to need the same things other babies do. Even if you don’t ever really feel joy during your pregnancy, I can’t tell you the overwhelming joy and love that I felt when they laid my son on my chest for the first time and he blinked up at me with those beautiful almond-shaped eyes. Four months in, I feel that joy every morning when I wake up to the sound of lips smacking in the bassinet ready to eat. For all the sadness I waded through during the emotional mess of a prenatal diagnosis, I have never felt so much joy in my life as I have right now.

From Therese, describing how she was able to feel joy by keeping a big picture perspective during an ultrasound:

Our Down syndrome prenatal diagnosis was made at 18 weeks. I remember feeling the wave of fear envelope me as I lay on that ultrasound table. Four markers were found, and even though we needed to confirm it with bloodwork, I knew in my heart that our baby had Down syndrome. I was so overwhelmed that I had the technician stop trying to get better pictures of his heart, so I could catch my breath. I took in a big breath of air, followed by a long exhale, and the word “perspective” came to my mind. I knew it was going to be okay, regardless. We would love this child, regardless of his differences. My husband and I were very open with our other five children in telling them about his extra chromosome, and approached telling them and the rest of our family and friends in a very positive light. We recognize that each of our children is different, with both strengths, and weaknesses. Our job as parents is to raise each of them to best fill their purpose in life, and who are we to say that his purpose will not be as big as any of the other children’s? We are excited to meet him, and love on him every day of his life.

From Mary, talking about how she got pregnant as a single mom through IVF and grew to anxiously anticipate her baby girl with Down syndrome:

I tried for a long time to get pregnant with little to no success (two early miscarriages), but I couldn’t imagine living my life without having a child. My relationship had ended, and it was now or never. It wasn’t my dream to be a single mom, but I knew that I had to try everything so I wouldn’t have any regrets. I was going to give IVF one final shot. As I was going through the cycle (it’s quite stressful), I kept thinking, “what am I doing at this age? I could have a Down syndrome child!” But I was ok with that. I found out a few weeks later that I was pregnant, but it was at 7 weeks that the Dr confirmed it, and I remember asking him, “what’s the chance for Down syndrome?” and he responded “6 to 9%.” I said, “Wow, that’s high” and his response was, “think of it the other way-94-96% chance that everything is fine.” I thought, yes, he is right and I said, “well, it’s too late now anyway!” It was almost like I already knew.

Fast forward a few weeks, and I got a call from the high risk OB saying they wanted me to come in that day to go over my file. I had just had the NT scan a few days previous, and I had been trying to get in to see the OB earlier than my scheduled appointment which was still several weeks away. I knew the news couldn’t be good. One of my best friends came with me to the appointment, and there I was given the odds 1:5 that my baby had Trisomy 21 or 18, and I think even Trisomy 13 was mentioned, but it was all such a blur. My friend told me that I still had an 80% chance that everything was fine, but in the back of my mind, I already knew. I had just told my family the day before, and my sister in law asked if I was worried, and I told her “not really,” and quoted the percentages the dr had given me. I said, “someone is in that 6-9%, you just hope it’s not you.” I knew that I was going to keep this baby, no matter what God had given me. I’m not going to lie, I was scared. I was doing this on my own. All I wanted was one, typical child. I decided to get an amnio because I have always felt knowledge was power, and I had to know either way — I couldn’t go the rest of my pregnancy not knowing.

I will never forget the day, the moment that my life forever changed. I had a friend stay with me that day as I didn’t want to be alone when I got the call — regardless of what the outcome was. The morning passed, and I thought that maybe I dodged a bullet. I thought for sure they would do the “bad news” calls first thing in the morning. I didn’t get a call until about 1pm and I will never forget that moment, the moment that my life forever changed. I had been so excited to be pregnant, I couldn’t wait to tell people, and now this. I was about 16 or 17 weeks along when I found out. Here I had a life growing inside me and now I was wishing that I would just miscarry. It was the absolute worst time of my life. After I got the news, I had a big ugly cry, and my friend and I went out for lunch and went maternity clothes shopping as my clothes were beginning to be too small. A few people at work knew that I was having testing done. I told them the outcome, but also told them that I didn’t want others to know. I had to come to terms with the baby I was carrying and grieve for the one that I thought and dreamt that I would have.

I still had to go back to the genetics counsellor. They told me that 50-60% of DS babies have a heart defect, and although they knew that I wanted to keep the baby, they said sometimes people change their minds once they get the results from the echocardiogram. But I knew that I had to take what God gave me, but God, it was going to be hard. Once I had the heart scan, I really only had a few days to make my decision, but I already knew. I also already knew, that my Bean would not have a heart problem. I wasn’t even worried about it until the actual day of the scan. Somehow I just knew, just like I always knew that my Bean had Down syndrome. The scan came back fine, and I was relieved. Now, I had to accept it and get on with things as I couldn’t hide it anymore.

At times, it was very hard, but I had a good group of friends, and they rallied and supported me. I started showing at around 20 or so weeks (well, I couldn’t hide it anymore!). Part of me was still sad, but I knew that I really did have a little miracle growing inside of me. Everyone was so excited for me as they all knew how much I wanted to be a mom. I had the most amazing pregnancy — I had zero complications and I literally glowed — even strangers told me. I have never felt more beautiful or radiant in my entire life. I loved feeling my Bean kick. I did some amazing maternity photos — I wanted to remember this time with happiness, and they were beautiful pictures.

It was an amazing time for me, that is for sure. I really wanted to enjoy my pregnancy, and I didn’t want people to feel sorry for me or avoid asking me things if they knew the baby had Down syndrome, which is the reason I kept it quiet. And when my beautiful Bean was born, I looked at her and thought “she’s beautiful, she’s perfect.” And she was. Ainsley is a little miracle and is a fighter.

I think Ainsley is perfect. When I was pregnant, I remember telling my friend that my baby still has value and my baby can have a good life. I began to read up on Down syndrome, but I had to stop as I found it so depressing (all the health issues that they often have), but after Ainsley was born, I went back and read things again and realized how lucky I am. How lucky that Ainsley has no health issues whatsoever. How lucky I am to have such a beautiful, happy, and healthy child. Yes, she will have to be monitored for certain things for the next several years, but somewhere, I just know, that she is going to be fine. How lucky I am to have an amazing group of friends and family and how lucky I am that Ainsley has brought so many people together.

Yes, Ainsley has an extra chromosome, Down Syndrome, but I call it the extra chromosome of love. While I was pregnant, my aunt said on more than one occasion “it’s going to be so hard.” I never had illusions that being a parent, albeit a single parent, would be easy, but I told her, “but I don’t know any different.” Now I see how much my aunt absolutely loves and adores Ainsley. I think she actually loves her that wee bit more than my other nieces and nephews. Yes, Ainsley will have some delays in crawling, walking and talking, but she will reach those milestones. Somedays it’s hard, because we have to work so much harder than typical children to reach these milestones and it seems unfair, but that is life. When I look at Ainsley, I don’t see a baby with Down Syndrome, I just see this beautiful, happy and engaging baby, who is so much like other children. And I feel so lucky to have her. When a friend came into the hosptial the day after Ainsley was born, she was crying, (happy tears) saying “there has never been a baby more wanted or more loved,” and she was absolutely right!