Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.



Thursday, August 27, 2015

Guest Post- Our Diagnosis Story: Brenda Hickson

I remember that day like it was yesterday. November 18, 2014. I was going in for my 20 week ultrasound. We had found out about a week before at a 3D scan that we were having another girl, we were so excited for Brielle to be a big sister! My husband, Josh was working that day and couldn’t come, so I got my mother-in-law to come over and watch Brielle and off I went. I couldn’t wait to see my beautiful baby again!
The ultrasound tech (who I am happy to say I now call my friend!) did her scan and never indicated anything was wrong. She gave me my results in a sealed envelope and off I went to see my doctor without thinking anything was wrong.
My doctor opened the envelope and very quickly, but gently, told me that they found some “soft markers” on my ultrasound that could indicate a “genetic disorder” which could mean a number of things or could mean nothing at all. I don’t remember much about what else she said, it was all kind of a blur after that. I remember driving home totally stunned. I walked through the door and when my mother-in-law asked me how it went, I broke down and sobbed “the doctor thinks there might be something wrong with the baby.”
Those next few weeks were a confusing time. I remember saying, “I don’t care if she has Down syndrome, I just want her to be healthy.” I look back now and know that the only reason I said that was because I thought that’s what people would expect a Christian woman, who is staunchly pro-life, to say. The fact of the matter is, I was terrified. I grew up in a very small community with very little exposure to people with disabilities. And to be completely honest, people with disabilities had always made me feel uncomfortable because I didn’t know how to act around them.
Long story short, about 2 weeks later, I got a phone call from the Genetic Counsellor who confirmed what I already knew in my heart; our baby girl had Down syndrome. Brielle, who was about 16 months at the time, was really sick with a bad virus. I was literally up to my wrists in toddler poop and puke while trying to talk on the phone getting the most devastating news of my life. I hung up the phone and started sobbing.
My husband came home and tried to comfort me. He accepted the news a lot better than I did. He also kept faith that the test was wrong and that she would be born perfectly healthy. I, on the other hand, knew. Call it Mothers intuition, but I knew from that very first day that the test would come back positive.
If it wasn’t for Brielle, I wouldn’t have even gotten out of bed for those last months of my pregnancy. I was completely and utterly devastated. I was angry with God. “Why me? Why this baby?”
The following are just some of the thoughts and fears that ran through my mind:
·         I grieved the fact that Brielle would never have a “normal” sister relationship. Would she resent us when she got older for having to always stick up for her sister, or would she be embarrassed to have her around? What happens to her when we die? Is that “burden” now on Brielle to look after her? Would Brielle feel always like she came second because of her sister’s complex medical problems and needs?
·         I thought she would be ugly. This one is so shameful for me to admit but I firmly believed that this baby would come out and I would think she was hideous. I resolved that we would never go out in public for fear that people would stare or say something hurtful to me.
·         I was frustrated that no matter how many doctors appointments or ultrasounds that I had (and there were A LOT) that my baby would still be “broken”. There is no fixing Down syndrome. I was resentful that these appointments and trips were taking time away from Brielle.
·         I felt like it was a waste of a pregnancy. I was stretching my body and going through this pregnancy for a baby that I didn’t even feel like I wanted. Since we only ever wanted 2 kids, we were done after this. So now we only had Brielle that would ever get married or give us grandkids or excel in school and/or sports. That’s a lot of pressure to put on a person. Looking back, this was just my pride. Of course you always want your child to be the best at everything so it was a huge blow to my ego to have a child who would have intellectual and physical delays.
·         It pains me to say this, but I started to resent that baby growing in my belly. I thought maybe it would be better if I had a miscarriage or a stillborn. Better for us and better for her to not have to grow up with a disability.
·         I longed for the life that I had pictured in my head. Two beautiful, successful girls growing up together as best friends. Someday they would move out, go to college, get married or have children. My whole “plan” was ruined. (How selfish and na├»ve I was to think she couldn’t accomplish some of these things!)
Everyone tried to say the right thing, but it didn’t matter who it was or what was said, it made me angry. How DARE people try to encourage me?! They didn’t know what I was going through, no matter who they were. I remember reading stories from parents of kids with Down syndrome who said “it will all change once you see her.” They didn’t know me! They didn’t know who I was or what I was thinking. I was so angry with everyone. I knew that no matter what happened, I would never feel the same for this baby as I did for Brielle. I was in such a dark and angry place, I didn’t even recognize myself.
I started hating going onto Facebook and seeing all these happy posts about my friends and family having these beautiful, healthy babies for the tenth time and I wasn’t even lucky enough to have two normal, healthy children. How was that fair?
Through all of this, my husband never wavered. He never doubted me as a mother for a second. He told me over and over that I was just hurting but as soon as I got the grieving out of the way, that I would love this baby so much more than I could have ever imagined. I thought he had no idea what he was talking about. To give you an idea of how amazing Josh is: he said this to me just before she was born; “We are so lucky that we will probably always have her at home! I think we would be lonely if both our kids were gone.” He has never looked at this as a burden or a punishment. I wouldn’t be where I am today if it wasn’t for him.
It’s a funny thing when something like this happens to a person. You doubt everything you once knew. You question yourself as a wife, a mother and a human being.

Skip ahead to March 15, 2015. I was in labour and I still had myself convinced that if she came out a stillborn, I would be ok with that. She was born at 5:11pm. The NICU team checked her over and asked me if I wanted to hold her.
It was that exact moment that I realized I did. Oh, how I wanted to hold this baby girl! I wanted to love her and cuddle her and kiss her and never let her go. I wanted to shield her from all the hurt in the world and protect her against people who are set on extinguishing people like her. That first picture we have together is real emotion. I wasn’t just smiling for the camera because I thought that’s what was expected of me. I was crying and smiling because I couldn’t believe how much I loved this little girl. I couldn’t believe how beautiful she was and how much she looked like her sister. Yes, I saw the Down syndrome but I also saw PAST the Down syndrome and saw my baby. She looked up at me and I could have sworn I heard her say “See mama? You had nothing to worry about! Look at how awesome I am!”



Charlie Grace came home with us only TWO days later. Once I thought I would never post pictures of her or take her out in public. Now I probably annoy people with all the pictures I post of her and how much I talk about her. I love showing her off to everyone, including strangers. And what does Brielle think about her new baby sister? Well this photo kind of speaks for itself.

 A child’s love is so pure and so honest. Brielle doesn’t know there is anything different about Charlie. She just loves her baby sister. Charlie will make Brielle a better, more empathetic person and Brielle will make Charlie a better person by just loving her for exactly who she is!
The Down syndrome community is fantastic. The people and children you will meet when you become part of this exclusive group will shatter everything you thought you knew before. It’s like gaining a whole new family from just having one baby! They lift you up and support you because they know what you’re going through.
There are still some hard days. When she had surgery 2 weeks ago to repair a heart defect, that was hard. When I see something cruel posted online about people with disabilities, that’s very hard. I try not to hold it against people. I was once ignorant to the beauty of these people too. When people use the “R” word; it hurts my heart. But again, I try not to hold it against people because I was one of those people 6 months ago! All I can do is just be Charlie’s advocate and try to kindly educate people to the best of my abilities.
All of these emotions I felt after we received her diagnosis, I was very ashamed of. I never planned on writing about them because I have a lot of pride and I didn’t want people to think less of me. But I realized I needed to. I want to let parents who are going through this right now that it’s ok to feel what you’re feeling. No one can tell you how to feel or now not to feel. It IS a grieving process. You need to grieve the baby you thought you were having so you can accept the baby you were blessed with instead. And nobody knows what you’re going though unless they’ve actually been there before. Whatever you are feeling is OK! Your feelings are valid, don’t ever forget that.
I hope you have the support and love that we have had through all of our friends and family. Charlie is SO loved by everyone around her. Not once did anyone we know question us about continuing our pregnancy. Not once did anyone say anything deliberately hurtful. We have been lifted and carried in prayer and in love and for that, we are eternally thankful.
She is already proving to us how determined and amazing she is. I thank God every day for her adorable smile, her chubby cheeks, her easy going attitude, and her chunky thighs. I thank God that she is healthy and thriving. I thank God that He blessed us with her. I don’t know what we did to deserve her, but I’m so glad we did!
So to people new to this journey, chin up. It’s such a hard thing to go through, but so incredibly worth it. If you’re anything like I was, you won’t believe a single word I just said. But I hope in a few days or months, you will think back and take comfort in this. Your child is beautiful and will amaze you every day.

“Down syndrome is a journey I never planned, but I sure do love my tour guide!”


2 comments:

  1. Love this! My 5th baby, who is almost 4months old is a beautiful baby girl with Down syndrome. I related to so much that you wrote.

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