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

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.

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