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 naïve 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!”

Encounter Sunday: Purposeful Steps....

I was thrilled to be able to share a bit about our life (so far).  Here is the transcript to accompany the video....
I have always been a believer, but I don’t think I really knew about faith, hope or love until I entered the season of parenting.  The last three years, especially, have solidified for me how destined our lives really and how the path set for us by Him.
I grew up in the Catholic church. Church every Sunday morning (or Saturday nights when my parents were feeling crazy). Catholic grade school, middle school and high school.  Some of my teachers were nuns.  We wore plaid uniforms- the whole nine yards. But even through those years of my life, I never really developed a relationship or deep sense of God or my faith. I rarely attended church through college and the years before kids.  I prayed and worked to be a good person, but I never got much out of worship and it wasn’t a priority.  That changed soon after I learned I was expecting our first child.
Entering the season of parenthood is an interesting one.  Excitement, worry, anxiety, exhaustion – so many thoughts and emotions. Not long into our first pregnancy we discovered I had miscarried.  There really is no way to describe that time.  I was devastated. Throughout my life, being a mom is something I always saw for myself.  And after a year of trying for another child, I started to feel hopeless and found myself praying more often about what to do. But all that changed when we found out another child was on the way.  It was a cautiously optimistic, but incredibly hopeful time.  Until it wasn’t.
At 26 weeks, I went into premature labor.  For those not in “the know” a pregnancy lasts about 40 weeks. After weeks in and out of the hospital and great attempts to keep our little one cooking, Katelyn Elizabeth was born at 32 weeks.  I was so grateful for my naïve attitude towards having a baby.  If I knew then what I know now, I would have been a complete wreck.  But, instead, I kept the faith. Prayed at her NICU isolette and had faith in God and our medical team. 

One month in the NICU waiting to bring our daughter home. It seemed an eternity. Weeks spent in a room with dozens of other babies, waiting, hoping that this would be the day that she would eat well and breathe well. Days spent watching her sleep, unable to hold or snuggle her. Hours full of learning from nurses how to care for her. This season was an enormous test on my faith. SO many questions…Why? Why her? Why us? Why is this taking so long? Will she ever eat? Will we ever be a family at home? It was during this time that I found “my verse.” Yes, at age 26, after years of believing, I found solace in His word.  Hebrews 11:1 “Faith is being sure of what you hope for and certain of what we cannot see.” I held on and kept the faith and one day after my first Mother’s Day, we brought our daughter home.  I never dreamed how important this season would be in a few years.  Purposeful steps on my path.
Shortly after having our daughter, we decided this parenting thing was right up our alley and we knew more kids is what we wanted.  After suffering another early miscarriage, I became pregnant again and prepared to have children that were 16 months apart. Another test of faith and hope as we prayed and planned with the doctors to ensure a better pregnancy this time around.  Around 18 weeks, my body showed signs of premature labor again so we put a plan into effect to keep him (yes a BOY!) cooking.  Thankfully, with partial bedrest and some medication, I delivered a full-term Andy at 37 weeks.  Shortly after he was born he needed some breathing support, but hours later he was nestled in my arms in our very own hospital room.  I had never been so happy; two happy, healthy kids.

But, you know how kids like to keep you guessing? After his first birthday the little guy began to vomit.  A lot. Every day. After many months of doctor’s visits, researching and praying for guidance down the right path and strength to advocate for his care, we found answers and treatment hundreds of miles away.  Within a few years’ time, he was healed and growing and healthy.  More parenting experience under our belts.  And more purposeful steps on my path, indeed.
Having two children close in age and spending lots of time dealing with medical issues has a way of wearing a mom down.  Maybe you can relate? But then we fell into our rhythm of life. The kids were growing older, getting more independent and starting school.  I was completing my master in Educational Administration and working full-time as instructional coach-a job I felt destined for.  And then we discovered baby number three was on the way.
Yes, a surprise, but one that was definitely placed in my journey for a reason.  After getting over the initial surprise and worry of another miscarriage, I found a deeper struggle than I ever imagined I would face. I was in the season of busy- with family, job, coursework.  I had been feeling “not enough” for anything; doing so many things, but not feeling as though I was doing anything well. Ever been there? I loved my work. The older kids were starting school.  I was just about to finish my administrative degree. I remember vividly sitting in this space worshipping and praying for an answer about my future. What it would look like.  What I should do. After months of thinking and praying on it, I made the decision to quit a job I loved and stay home with my kids. A really tough choice for me, but I knew in my heart it was the next step I was supposed to take.  A purposeful step on my path.
This time, I rocked pregnancy. I took precautions, listened to my body and Colton Thomas came into the world fast and furious at 39 weeks.  He roomed in with me and we were home as a family of five in just a few days. I felt like this was the way my life was meant to be. It was hard to not go back to work, but it was also wonderful to be able to spend more time with my family and be a full-time mom.  This experience taught me so much about my power and confidence as a mom. Another purposeful step on my path.

So two kids was our unspoken plan. Colton changed things up a bit and I really loved having kate and andy close together and wanted that for Colton too, especially with age differences.  Not everyone in our house agreed, though….but once Colton turned six months old, we made the decision to give him a sibling.  Less than a month later, we discovered we would be welcoming baby number 4 by the end of the year and we had no idea how much our life would (and wouldn’t) change in the months to come.
Fourth child. Sixth pregnancy. I felt very confident after getting past week 12.  We had a game plan, although this time I was in a new high-risk category with three letters- AMA.  It was the nice way of medical community noting that you were “old” on your chart.  I would be 35 when our child arrived, so a new flag was added to my file. It really changed very little- we still opted out of prenatal screens and blood tests.  Until things changed.
I went into our 20 week anatomy scan mostly concerned about two things: my cervix and the baby’s gender.  I wanted to be sure I was not showing signs or early labor again and I am a planner and really wanted to know what to buy. The scan went normally- I saw HIS heart beating (yes, another boy, much to our daughter’s dismay). I saw fingers and toes. Measurements were on track and my cervix was behaving.  I chalked it up as a fabulous appointment and stared at the ultrasound pics until the doctor came in.

Have you ever had that moment when you meet someone’s eyes and you just know something is happening?  When I saw his face, I said a quick prayer, assuming the worst, and then felt as if the rest of the appointment was an out-of-body experience.  He began, “These are difficult ultrasounds to go over…” He mentioned how perfect everything was, except that they baby did not appear to have a nasal bone.  This meant very little to me, until his next sentence, “which can be a marker for Down syndrome.” Those words filled my mind. I listened to his recommendations.  I heard about next possible steps.
As he finished, his other comment still remains in my heart, "You will need to talk with your husband and decide what to do."  I listened as he talked about a referral to a perinatalogist for a level 2 ultrasound and possible amniocentesis for a diagnosis.  I left the office and cried on the way out to the car. I was so worried about all the medical and social ramifications of what I had just heard. I had planned to go to the store and pick up a cute gender-specific outfit to share the news with daddy. Now I just wanted him to hold me.  I drove the 40 minutes to his office, praying he wasn't on a job site and called him to come out to my car.

I felt such a heavy heart as I shared with Brian that our baby may or may not be "perfect." My emotions overwhelmed me and my husband comforted me through. We talked and he reminded me of several things:
We always opted out of testing because we would never terminate a pregnancy
I do not need to worry about "what ifs"
Our baby was healthy
We will get through this

I decided at that moment leaving his office, that we indeed would be just fine.  This baby was meant for our family in whatever form it took and we would welcome it just as we had the other babies.  A little retail therapy was called for and after buying a few cute outfits, I was ready to face what was headed our way.  Don't get me wrong, I had a billion questions and doubts, but I also felt a sense of calm that we would all be ok. We decided to do one of the new prenatal screens- results would take a week.  I did lots of thinking and praying in that week.  It was strange how many signs I felt I was given and really felt as though I knew the answer long before the call came in. So much that had just blended into my days was coming front and center.  One sign even came in this place as I noticed and met the Niday family. Watching Lesa, Casey and their family on Sunday mornings was an important glimpse into my future.  I knew that God was sending me a sign that we would be ok.  My prayers changed from hoping he didn’t have Down syndrome, to praying that he would be healthy. I was now more worried about heart issues and other medical concerns than anything else. My prayers also changed as I read accounts from mothers who chose to terminate a pregnancy after learning the child would have Ds. My eyes were wide open in a new world. Just when you think you are a seasoned parent, everything changes…
I began connecting with moms before he was born and learned so much from them about what the future might hold.  I was growing more at ease and the little guy was doing great. We were monitoring a potential heart issue and we made it through a few good snowstorms and 3 days after Christmas we welcomed Owen into the world – he was our biggest baby yet!  After a week in the NICU, our family was all home together. No major medical issues came up and we were a family of 6.

After Owen was born, I felt a deeper need to connect with other moms who had just had kids “rockin the extra chromosome” and I invited other new moms to join a “2012-2013 Rockin’ Mom” Facebook group. Within weeks, I had 150 new friends from around the globe. We were living this new life together and I will forever be grateful for their friendship, support, love and acceptance. A very purposeful step in my path.

In sharing our lives, it became clear how much there is to learn from knowing you are not alone in a journey. I had always wanted to write and with my new best friend in Australia, we began collecting diagnosis stories from families.  Within a year, I compiled Unexpected and had over 80 stories from families available for new parents to read online or in print. Reading the experiences of so many and seeing the similarities, especially in how the diagnosis played out with the medical community propelled a mom to think bigger. She wanted to start a nonprofit that would support families and help physicians deliver the diagnosis to families in a better way.  She asked me to join her and together we formed the Down Syndrome Diagnosis Network.   The rest, as they say, is history.
Today, we are two years in and have nearly 2000 moms in our online groups with children under the age of 3 with Ds. The book has been well received and helped many families through the diagnosis phase.  DSDN has exhibited and presented at the national conventions. We have partnered with the leading Ds organizations to support families. Because of this work, I was approached by a large publisher about writing a guide for new parents of children with Down syndrome.  This was an opportunity that I couldn’t pass up and being able to include the words and stories of so many families was such an incredible gift. The book will be available online and on shelves in stores like Barnes and Noble this winter.  Next month, we will hold our first annual retreat in Minneapolis to connect, inspire and recharge Rockin’ Moms.  I will get a chance to meet moms from our groups and watch how our work has laid the foundation for these connections and friendships.

I would never have guessed this is where I would be today, am I constantly in awe of what we have built, but the progression has been natural and surely guided by Him. It is so very clear to me of the importance of each step on my path.  All of life’s experiences placed so carefully by Him so that I could be right here today doing what I am doing.  My background in education, my parenting experiences- Kate’s NICU time, advocating for Andy, rolling with changes after our surprise Colton blessing. All of it, I believe, to prepare me for my life and future.
When preparing this, I thought back to two songs that really defined this journey for me. The first: Glory to God. I remember sitting here in worship and feeling those words “take my life and let it be all for you and for your glory. Take my life and let it be yours.” I feel like that is exactly what I have worked to do.  Letting God work through me. Giving up that control and seeing the bigger picture as it unfolds.  Awesome.
The second is one that I first heard on the way to the NICU one early morning to be with Owen, Blessings. Many a tear fell hearing the words: “What if trials in this life are your mercies in disguise?” It really made me pause about what blessings really were and led me back to that old Garth Brooks song Unanswered Prayers “Some of God’s Greatest Gifts are all too often unanswered prayers”
All of the pieces were put into place so that I could use my experiences to serve others. I am so glad that through my kids and family, I was able develop my relationship with God and strengthen my faith. Many times throughout this parenting journey I might have been praying for the wrong things, but today I know I am right where He led me and where I am supposed to be.