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.
|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.
|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.”
“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.”
“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.”