When we are expecting a baby (which is pretty often) we don’t find out the baby’s sex before birth. We like to be surprised.
But when you don’t know whether it’s a boy or a girl, people very often ask if you would prefer to have a boy or a girl. I really never had a strong preference either way, so I would say, “All we want is a healthy baby.”
Until about my fourth baby, when I realized that that wasn’t true. I realized that what I wanted was THAT baby, the baby who was already there, no matter what. No caveats. No modifiers.
What brought me to that realization was a deepening of my faith, and meeting my cousin Monica’s baby daughter Madie, who has Down syndrome. She was the first person I ever remember meeting who has Down syndrome. I didn’t know what to think when I first found out. But as she has grown, it’s been easy to see what a blessing she has been to her family.
I wish I had known that earlier. It would have saved me a lot of unnecessary worrying. I wish more people knew it. I wish people didn’t panic, not knowing what life would be like with a Down syndrome child or for a Down syndrome child.
So, today, on World Down Syndrome Day, I want to introduce you to some children and their mothers (or siblings) to let THEM share a bit of their lives with us.
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| via 5 boys and 1 girl make 6 photography |
- How did you learn your child has Down’s syndrome?
I learned in the Delivery Room. It was a complete shock! There was complete chaos and I knew right away that something was really wrong by the way everyone was acting. I thought something was terribly wrong with Madie like she was dying but she was screaming so loud so I knew she was breathing. My doctor cleaned me up and they whisked Madie down to ICU for evaluations and then he came over and said that they suspected Down syndrome.
- How has having a child with Down syndrome changed your life?
It changed everything for me in the beginning. I was scared big time and felt very unprepared. I cried a lot for the first few months. I was angry at God and myself. It took me several months to come to terms with the diagnosis. Right now Madie is a 7 year old and I literally think I have met over 1,000 new people due to Madie’s extra chromosome. I would never have met such amazing people on this journey that Madie took us on. God had a plan for us and as always, His Plan was perfect for us.
- What would you say to a woman who just found out her child has Down Syndrome?
“IT WILL BE OK, I PROMISE!” My uncle told me right after Madie was born that “God doesn’t make mistakes and He doesn’t make “junk”” I was a little upset with his reference to Madie and “junk” but I got the point. A friend also told me to take a deep breath and to remember that Madie will bring me great joy. More joy then I could ever imagine. Both my Uncle and friend were %100 right! So I would tell a new mommy to enjoy her child, don’t worry about every little thing and to research as much as possible when it comes to taking care of your child. But, beware the Internet it is a very scary place for a new mommy. And finally reach out to other families and connected groups. This is what stated and ultimately provided me with healing and helping me come to terms with Madie having DS.
First of all, let me start off by saying that Joslyn Lily is my sunshine – day and night. She is an amazing beautiful baby that has brought us so much joy.
She is now 10 months (yesterday), and was born on 05/19/13 at 12:54 am! SHE WAS GORGEOUS, we took our first family picture (while I was still strapped to the bed getting sewn up from surgery). I told Shawn to go with her . . . that I was fine, but I didn’t want Joslyn to be alone.
The [doctor] simply blurted out “well, your baby has shown characteristics of Down syndrome.” And that was it. I laid there completely alone . . . and STILL had yet to hear a “Congratulations!” from her – or anyone.
That was the longest hour of my life until I was reunited with my husband. He was immediately shaken to the core, and I was strong. I just wanted to see my baby girl. And finally the time had come. They wheeled my bed into the NICU and I saw her in her incubator. She was so tiny – 5’10” and 17 inches – but absolutely perfect. She was our little miracle we had waited for 36 weeks – but really, I had waited for my whole life. I touched her little hand and she grabbed on.
The nurse then said, “do you want to hold her?” I said “Yes! I can hold her? – YES!” She melted me. We took some pictures and I held her close to my heart and said to her that she will “forever by in my heart, and will forever be my baby girl”. We then went up to my room where we could both get some rest . . . as we had been up for 25 hours.
That day – her birth date – my husband really struggled. Our families came and it was clear we were going to have all the support we needed. But, I was strong and “carried my husband”. Then, the following day it was my turn – I struggled, and it was my husband that “carried me”. Then the next day – two days after she was born – we were both past all that and never looked back. Our sweet Joslyn was in the NICU for two weeks and we finally took her home on June 1st. We are truly blessed that she is a healthy, beautiful, energetic, funny, little girl that has managed to fill every single crevice of my heart.
Joslyn has completely enriched our lives. My mom sold her house,quit her job and moved 1 mile from us so that she could be her “granny nanny” . . . so Joslyn has brought us closer with my mom too. Our lives are better because of all the wonderful people we have met in the Down syndrome “community”. It has been so warm and amazing to have met all people and families I never would have met without having our sweet Joslyn.
If I were to meet a woman who just found out, I would tell her that her life will never be the same . . . but make no mistake, it will be so much better. Filled with love, joy, happiness, wonderment, pride and pure bliss. I would also tell her that at times, things can be scary – but to allow yourself to feel all your emotions and embrace all the help, love and support from your family, friends and new found “community”. We are all here to support each other . . . all our children are precious miracles.
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| via 5 boys and 1 girl make 6 photography |
1) We found out about our son’s diagnosis about 12 hours after birth. We chose not to do any prenatal testing as it would not have changed our outcome.
While raising a child with special needs has its challenges, it also makes you appreciate the little things in life. Each milestone he meets is like a mountain climbed. He has taught us to take life one day at a time. You never know what’s ahead.
Our little Luke Edmund— all 4 lbs, 1 oz of him—was delivered via c-section at 34 weeks on November 16. He had Apgars of 8 and 9, and, I’m proud to say, a good scream. After assessment and swaddling, the nurses put his little face next to mine and I told him I loved him and that I was proud of how strong he was. Such a sweet face with wide, wondering eyes, taking everything in. I was VERY unhappy about that C-section. But it was worth it to hear Luke cry, and see his little pink face.
Then the doctors had more news: they saw markers of Down syndrome on Luke. I must say that, although this was a surprise, it was not a big deal for me. (The C-section was certainly a bigger blow. That was the lowest moment, for me.) I have since read quite a bit about Down syndrome, where I learned that parents’ emotions typically range from grief, resentment, depression, anger, and helplessness: none of which I really identified with. Then there was a brief paragraph which began as follows:
“There are also other parents whose lifestyles, belief systems, or backgrounds truly enable them to have little or no negative feelings on hearing that their baby has Down syndrome.”
Although I didn’t exactly need the reassurance, it was affirming to see, in print, that it was OK not to be terribly upset about a Down Syndrome diagnosis. I am grateful to my parents, upbringing, and Catholic faith for enabling us to love and accept little Luke from the outset. My father, who was a very faithful Catholic, died four years ago. Sometimes I think he may have had a part in all this. I imagine he took the good Lord aside one day and said, “See my daughter and her husband and all her wonderful children. Could you give them a beautiful gift and send them Luke?” I am sure Dad is very, very happy about Luke’s birth. I wouldn’t be at all surprised if he had a hand in Luke’s arrival: it would be quite in keeping with his character.
- “When I found out my baby brother had Down syndrome I said, ‘Okay! What’s Down syndrome?'”
- “Babies with Down syndrome need lots of love and attention — just like other babies!”
The video that made me want to write this post (and taught me that there was such a thing as World Down Syndrome Day):
It’s just so, so, so lovely.
A few links:
“One night, not long after we learned of our daughter’s Down syndrome diagnosis, my wife and I were lying in bed when she pointed to her pregnant belly and said, “You know, we’ve been talking about this child as if she were imaginary, but she’s here in the bed with us now.” It was a powerful moment for me. I believe I became prolife right then and there.”
“For Palos Park, Ill., mother Katie Driscoll, it all started with one photograph.
When Driscoll’s sixth child was born, the mother of five boys was happy to have her first girl. The news of her daughter having Down syndrome did not diminish her excitement.
“I didn’t want people to feel sorry for her or for us because I was proud of who she was,” she told The Huffington Post.
So, Driscoll picked up her camera and started taking pictures of her daughter, Grace — photographs that would eventually be shared with the world.”
Dear World #Iamnotsad
“We dream for her the same way we dream for her brothers. We strive for independence and employment. We hope she develops a passion for something that makes her really happy. I look forward to watching her daddy walk her down the aisle in a beautiful wedding dress. Even though in your eyes these dreams seem unrealistic. #Iamnotsad.”
Down Syndrome: A Year of Grief and Joy
“And one day, when William reads this, he will know that there was a time I was very scared to be his mom. For that I will always be sorry. But he’ll also know that even though I was scared, my love for him was stronger than the fear. And that he has brought me nothing but pride and joy. And that I can’t wait to spend our life together, the four of us.”
Wow, what a beautiful post!! Thank you so much for sharing these wonderful stories with us!
Kendra, I love this post! Thank you for sharing these families stories! I especially love what you said about wanting the baby that was already there, no matter what. <3
This is lovely! And, I do love what you said about wanting *that baby* that is already there.
My cousin just had a baby 2 weeks ago that has down syndrome (a surprise, they had no idea beforehand). I also have a friend from when my husband was in law school whose first baby has down sydrome. She blogs at Journey Narrative. It's a great blog that talks a lot about the joys and challenges.
We've had a few Down Syndrome buddies in our life. The first was Ashley – the sister of a kid on my son's ball team. She was fascinated with my three sons and every time she saw me she would name all three and want to know where they all were. The only fight my middle son ever got in was in middle school when some kids were making fun of Ashley – he punched the biggest bully right in the eye – and I made sure he didn't get in trouble for it. And then there was Abby – our pastor's daughter. She is the same age as my youngest son and she has a HUGE crush on him. All through school whenever she would see Austin at school she would start clapping her hands and say "Auggie" (our nickname for him). Our church does Wednesday night dinners and she would always sit with me at dinner. Sometimes I would look around and I would be at a table with Abby, her best friend Mary (also with downs) and a gaggle of little girls and I sort of preferred it that way! Abby and Mary would sit with me in church and sing with so much gusto! Talk about a joyful noise! More recently a friend of the family – a girl I used to babysit as a teenager – became mother to a little girl, Millie Kate, with Down Syndrome. Her diagnosis was a surprise to them but not to God. Millie is a year and a half and has been such a huge, huge blessing. I think the lesson these girls have taught me is to realize blessings come in all different packages. What the world sees as imperfect, God has made perfect.
thank you so much. Beautiful.
This is all beautiful. Thank you!
What a beautiful tribute to these special kids! I had a similar "realization" a few babies ago, too. We also don't find out if we're having a boy or girl, and the asker always follows up with, "so long as its healthy!" I think I've challenged a few people on that. Even if he/she isn't, s/he's the exact baby we're meant to have.
Anne McD
Right there with you on your Quick Take #1.
How beautiful! My sons are getting married and starting families. If any of them are ever faced with a DS diagnosis, I am going to send them to this post. Thank you for sharing it.
So beautiful! Brings tears to my eyes 🙂
Thank you. 🙂 I definitely understand that "as long as it is healthy" comment, and don't think that people are totally wrong to say it– because you would never WISH illness upon your child. When I was pregnant I absolutely wanted my baby to be healthy! But I also see your point here and it's true that more than anything, I wanted THAT BABY, no matter who she was or was not. Her personhood was and is infinitely more valuable than her gender or health.
Typo removed. THOSE videos were inspiring, beautiful, heart-melting, and heart-warming.
I had a similar thought as Rebekah R…while I understand your point today on World Down Syndrome Day, I don't think there is anything wrong with praying for a healthy baby. A baby with DS is healthy (unless they have other medical conditions, which do often occur with a diagnosis of DS). But praying for a baby who does not need surgery or chronic medications or having to deal with a lifetime of a debilitating illness is acceptable in my opinion. If God chooses to bless me with a child that is ill, I will wholeheartedly accept it, but I will still pray during this pregnancy for his health.
I agree. My son had a birth defect and needed surgery at two months of age. He's fixed now, but may have life long consequences. Being pregnant again, I constantly pray for a healthy baby, but I know I will be ok if this child needs extra care.
Lovely! Folks interested in even more real-family testimonials should check out Leticia Velasquez's book "A Special Mother Is Born" http://www.amazon.com/Special-Mother-Born-Extraordinary-Parenting/dp/1449724167. The New Evangelization is all about seeking and sharing personal encounters with Jesus; spending timewith real people who rock an extra chromosome is a powerful way to meet Jesus in others. Great post!
So beautiful. Thank you for sharing. We know a rather amazing young man who attends church with us. He is such a blessing to know. He just radiates love. Leo, my sin, and him love to hold hands and pray together mass.
Ummm Leo would my son not my sin! Oh dear!
Perfect and lovely, lovely post. One of my long list of pregnancy pet peeves is doctors being annoyed that I refuse genetic testing, more and more so the older I get. It is so hard to hold my tongue and be civil. I try to always keep the mindset that God "gives and He takes away," and I will never second guess Him and anything He chooses to fashion for my family–His ways and thoughts are higher than mine. But, not a day goes by that I don't thank Him for the health of my children, too!
Oh I loved this. We've found out in both of our pregnancies and actually the "we just want a healthy baby" line has always irked me. As if us finding out the gender meant we had a preference or really would have been disappointed by an outcome. Different strokes for different folks (though, I think we'll be keeping it a secret for future pregnancies). We decline genetic screenings for this reason though… we want the baby we have, whether it is "sick" or not. Knowing ahead of time may be nice, but at the end of the day, just like with gender, the outcome isn't going to change how we feel about the baby.
I understand the want for THAT baby. Although i don't have much experience with DS i had a miscarriage a year ago and still mourn that baby and keep telling God that i would have loved it even if there were developmental issues our health problems. Good bless those who are lucky enough to have these beautiful children!
My husband and I had a miscarriage when we were first married. People kept saying, "Well, you wouldn't want anything but a perfect baby," but we wanted that baby. I would have given my right arm and leg just to have our first baby. We had four babies who made it to birth (and adulthood) after that, but I still look forward to meeting our first baby.
I understand the want for THAT baby. Although i don't have much experience with DS i had a miscarriage a year ago and still mourn that baby and keep telling God that i would have loved it even if there were developmental issues our health problems. Good bless those who are lucky enough to have these beautiful children!
Very inspiring. Thank you Kendra.
Thanks for this post. I'm reminded of something I came across during the past Advent that I found really beautiful: http://www.rifton.com/adaptive-mobility-blog/blog-posts/2013/october/down-syndrome-art-paintings
I love this! Thank you. It really struck home and I had never considered that comment with all of it's implications. Bless you!
A beautiful post…every life is a gift. Thank you, Kendra.
I am sitting at work reading this (it is completely empty here), and honestly bawling. (I had also just hopped my 23-weeks-pregnant-self over here from crying at Dwija's page about the Sister Cristina video, but this overflowed my cup today.) Individuals with special needs, especially Down Syndrome, have always held an unmistakable place in my heart, and Kendra – I think that this may be my very favorite post that I have ever read of yours. What a beautiful idea you had with your interviews, and what an incredibly important message that you conveyed so, so perfectly. Thank you.
Thank you for sharing all of this. I was with you on #1 too until my chromosomally-gifted little girl came along. She's seven now and has rocked my world, entirely for the better. I'm so much better a mother and a Christian since her presence made me realize I had to question all my comfortable assumptions about the world.
That video is so honest and beautiful!
This is an excellent post, Kendra. Thank you for sharing these lovely stories.
I have three special needs siblings, ranging from mild to severe. Thank you for this post!
Wonderful! My two-month-old nephew has Down Syndrome and is still in the NICU being treated for esophageal atresia. I can't wait to watch him grow up, and I know he will be a great gift to our whole family. He already is!
Two of mine have special needs and it has certainly enriched our lives and made us better people, too. I am in awe of all these stories you've shared! All of them radiate joy.
Tears to me eyes. Thank you, such a beautiful post
yup. thanks for this. it took a friend many many years ago saying this to me, what a painful line this had been to her. so many of the little comments we think are innocent and cute, are actually really hurtful. its really good to always examine them.
I stumbled upon your blog because I was reading a Disneyland post (just booked a trip for the summer) and I started reading other posts of yours, and I found this one. My one year old daughter is developmentally delayed and blind. It has been a hard year, and it took me a long time to get over the guilt and fear and anger and sadness. I'm still heartbroken when I see pregnant women, hoping for 'healthy babies'… After a lot of prayer and tears I now feel the almost constant presence of Jesus with me, shining his light on my perfect little girl. I don't want anyone except her, and I don't see her disability anymore at all, I just see her as herself, and she is so beautiful.
Kendra, I have been meaning to write to you about this post. It is my favorite one so far, and I have a lot of your posts saved as favorite!!
I have a 7 year old with Down syndrome and certainly you are so right about the comments that "sting" and this is one that ALWAYS stings. What if your child is not born healthy? what will you do? And even though my seven yr old was born with holes in her heart she was relatively healthy besides her chromosomes. I am not one to speak out so I have never said anything to anyone, but I loved how you explained it all in this post. Even when your baby is born with an "illness" she/he is still a baby that needs to be loved and cared for. The illness makes her even more loveable. I appreciate you taking the time to honor those with Down syndrome specifically. Thanks so much!
Beautiful kiddos up there, and I love the sentiment of wanting "this baby", whatever that entails. We have an autistic child, and of course such a thing is not apparent at birth! But certainly when he was diagnosed, there was no talk of whether we still "wanted" him or not. With each subsequent baby there was the knowledge we had an increased risk of having another autistic child, and that was when I quit saying, "We just want a healthy (which generally means "normal") baby."…because in my brain, that was no longer a given,,,,but we wanted them anyway.
Just beautiful. <3