Defender

I didn’t know that when I became a mom to Jack,  that I would also take on the role of defender.  I would have to defend that his life is worth living.  

This was a statement that I recently shared at the Culture of Life Seminar at the March for Life conference held in Washington, D.C.  It was an honor to share our story about what life is like raising a child with Down syndrome.  Knowing that babies uniquely created like my precious Jack are terminated (up to 85% in the world) when the extra copy of the 21st chromosome is discovered prenatally.  

Many might ask, why do you share your story?  Well I share it because I know that many of these precious babies are terminated based on fear alone.  Fear of what they ‘think’ life will be like raising a child with Down syndrome.  What medical textbooks read that Down syndrome is, and the misinformation and outdated materials that continue to influenced the decision to terminate.  If only I could give them a chance to spend a day with us…to show others that our lives are not that much different than that of one that doesn’t have an extra special chromosome.  

The reality that all types of babies are aborted is heartbreaking but what has really hit home is that when a baby that has been growing in a mama’s belly for 20 weeks discovers on an  ultrasound that their child has Down syndrome, that this baby is no longer viewed as a life, but more a ‘problem’ that can be easily taken care of.  The constant growth and kicking of this precious baby that just wants to be loved like any other child, will lose his/her life because he/she wasn’t what the parents had ‘planned’.  Now a simple blood draw in the early weeks of pregnancy is easily available (promising 99% accuracy) and it frightens me that more and more babies like Jack will potentially not make it to birth.  My heart hurts for such a loss.   

At the conference I had the opportunity to listen to Paige Comstock Cunningham present that babies are not unconditionally welcomed in our society, but more so a commodity to parents.  What can my child do for me?  She is an expert in the area of bioethics and public policy and values life from conception.  Another mother shared her experience of raising her son with Cystic Fibrosis and how when she met with the geneticist she was told that they will do what they could to make sure this ‘problem’ wouldn’t happen again when discussing future children.  Her son was defined as a ‘problem’ and not as a person because he has CF.  Tears streamed down her face.  Another woman gave the perspective of running an organization, Mary’s Shelter, that welcomes mothers who find themselves in need of housing during a crisis pregnancy.  She started with a two bedroom apartment and now has grown to 5 shared homes.  What a ministry, to support and offer hope to a brighter future for women that have made the beautiful choice of life.  Mark Bradford, president of the Jerome Lejeune Foundation which is the largest private funder of research into Down syndrome and other genetic disabilities providing hope to families by funding research to help improve the lives of those living with genetic intellectual disabilities.  Research, care, and advocacy are all provided because of the respect for the dignity of all human life. Mark has done great work in his state to pass a bill that requires that medical providers give accurate up-to-date information on Down syndrome to parents that receive a prenatal diagnosis.  We are hopeful this bill will also be passed in Minnesota.   

My part of the seminar included sharing our birth story, how we heard the diagnosis, what Jack’s life has meant to us, and what we are doing to help share the mission of celebrating babies with Down syndrome along with bridging the gap between medical providers and families loving their lives with children with Down syndrome.  

I loved this experience, being surrounded with others that value human life, every human life.  Learning from experts in the field of bioethics, learning of the work being done in Down syndrome research, and getting other’s perspective on what it’s like to raise children with a diagnosis was very helpful and encouraging.   

At the end of the night while talking on the phone with Chris, the weight of the topic at hand just got the best of me.  The tears just couldn’t stop flowing.  The day was a constant reminder that many babies like my son are not brought to life because Jack is viewed as a ‘problem’ or bad.  Decisions made by fear.  The work to change this misconception of what it’s actually like to raise a child seems so daunting and overwhelming at times.  

Overall, my experience was very positive and I hope many more opportunities occur, to share God’s goodness in how Jack’s life was uniquely created, how he continues to positively impact us, and mostly give us so much joy!  During my stay I was able to meet up with a high school friend for a great lunch and then head home to my sleeping boys! 

I totally imagined traveling solo to be an adventure.  Fun to have the independence to read a book or nap uninterrupted, but I found myself just longing to be with my family.  Granted, breezing through security with my small bag was amazing compared to car seats, strollers, etc.  But I found myself longing for the noise and the commotion that comes with being with family.  It was a refreshing experience to know that really the best part of life is being exactly at the phase I am in.  Little people and a husband needing me, loving me, and enjoying my company.  What better place to be reminded that each life around me, big or small, extra chromosome or not, is a gift to me….

If you are interested in my talk at the Culture of Life…here is what I shared…

Hello, my name is Carissa and I am grateful to have the opportunity to share a little bit about my family and how my son’s diagnosis changed my life for the better.   I will start by sharing what led up to my son’s birth and what has transpired since he arrived in 2013.

I met my husband in a class at the college we attended and after a few years of dating we married in 2006.  Four years later we welcomed our oldest son, Luke and to describe the feeling of the joy we felt when he entered the world is hard to describe in words.  There was so much happiness, love, and excitement for this new journey ahead as parents.  We were greeted with many congratulations, words of wisdom from others and even strangers, and we ventured down the road of feedings, diaper changes, and all the wonderful things that come with welcoming a new life.

Almost two years to the day, we found ourselves driving to the hospital to deliver our second son, Jack.  It was the same route, same hospital, and almost the same exact same day of March.  Little did we know that the room would be filled with many different emotions when we met Jack.

My labor was progressing and we were within a few hours of meeting our new baby when the doctor came in and reviewed the plan for his delivery.  As she continued to talk she looked over at the monitor and the persistent beeping alarmed everyone in the room.  My son’s heart rate dropped to low 70s and my doctor apologized that she was going to have to take me into an emergency c-section.  I looked over at my husband who was cancelling his college courses for the next day and asked him to keep praying.  I heard the nurses say to him, “We will be back for you.”

As I stared at the ceiling, I asked them if they could go get him, which they replied saying he couldn’t be in there.  The last thing I remember as they were putting a mask on my face was a nurse saying, “The patient has a necklace on.” I had the tear drop cross necklace Chris had gave me for my birthday.  God was with me.

I awoke to a woman saying my name.  I asked again if they could go get my husband in which she said that he was with my baby and after I recovered for a little longer I could go to be with them.  In the meantime, Chris was still waiting in my room as a nurse and a nurse practitioner entered the room with our baby and assumingly asked, “Are you aware of Trisomy 21?”  Now, my husband is a very intelligent man, including having his doctorate degree, but Trisomy 21 is not language we use every day.  He must of looked confused as she continued saying, “Down syndrome.”  “We have reason to believe that your son might have Down syndrome based on characteristics of low muscle tone, lower set ears, his facial features.”  After finishing the list she left the room saying, “Well, just enjoy your baby.”

He sat in the nurse’s station watching over our new baby for another hour and half, waiting for me to recover and having no idea of what having Down syndrome meant for our son.  They wheeled me back into the room and still very saddened by the reality of how the delivery went, I cried when I first saw Chris.  He came over to me with our baby in his arms and said, “This is our baby, and they think he has Down syndrome.”  I cried out and just held him.  There was a lot of tears, confusion, and fear of the future.

As the days went by, and as family and friends filled our hospital room congratulating and loving on us, we were amazed at how our son was already making a huge impact on others.  We remembered that this was the baby we prayed for since we found out he was being formed in my womb, that he was fearfully and wonderfully made, and such a gift to our family.  Our prayer was that he would be a light to others, to encourage other’s in their faith in God, and a reminder that He is always faithful.

A week after Jack’s birth I blogged about how he entered the world and how God has an amazing plan for his life.   I was vulnerable to share the early feelings that I had when hearing the words, Down syndrome.  As the weeks and months past, we continued to see God’s provision and wisdom on this new journey and so were others.

As Jack’s first year birthday approached, I wanted to do something special to celebrate his life as there were tears on the night of his birth.  I promised that there would never be tears of sadness again on his birthday, but of joy and celebration for his life.  I thought of going back to the hospital and bringing the staff flowers, but I thought, no…I want to do something much bigger.  What if we created a gift basket with a letter from our family to another family that will receive the same unexpected news we did?  To start the family out with encouragement and help them celebrate their baby.  I connected with the hospital and we dropped off baskets filled with toys, blankets, a onesie, booties, and our letter to the family explaining what Jack’s life had taught us in the first year.  I found in the year that it wasn’t the resources and books I had read that were the most helpful, it was hearing from actual families loving and living their lives with their children with Down syndrome.  The letter explained that we knew the feelings they were going through, the fears of the future and what they thought their lives would look like.  I explained what Jack had taught us in the first year and how if I could, I wouldn’t change one part of who Jack is.

Here is an excerpt of the letter…

He looks like his older brother, Luke.  He has his nose, his ears, and his amazing hair.  He is more similar to him than different.  He is crawling, babbling, laughing, learning and exploring.  He has my husband’s strong willed determination to accomplish tasks that many of us take for granted.  He can cuddle like no other and his eyes speak right to your soul.  His smile will make anyone’s day turn around and his extra special chromosome has made relationships stronger and mended others.  His life has been a blessing to us and inspired others.  The unexpected news of him having Down syndrome was not a surprise to God, and it has been a year of trusting that He has a perfect plan for our family.

Many, if not all of the fears I initially had have not come to fruition, our lives do not look much different than they did before.  We have met some amazing people including his awesome therapists who have become more like family.  We also have been adopted into the most supportive community of families that have children with Down syndrome.

I did find out through the wonderful ways of Facebook that a family had received one of the baskets.  I read the mom’s comments which she shared, “We received the basket and it meant the world to us.  It was the only congratulations we got while in the hospital.”

After reading that families experience and hearing it was the only congratulations they got, I knew we needed to do this everywhere.  The idea of the basket started in the hospital that I delivered my boys and I am excited to share that we now have Jack’s Basket in all the birth centers (15) in the Twin Cities area and we get requests to send them around the United States.  Resources are provided in the basket that share early intervention programs, Gigi’s Playhouse-Twin Cities, Down Syndrome Diagnosis Network and other organizations available if they would like to connect with other families.  I am grateful to our local CBS news station, along with Good Morning America, our local newspapers, and good ole facebook for sharing our mission of celebrating babies and congratulating parents.

Along with delivering the baskets and celebrating this precious lives that are gifts, I am on a mission of bridging the gap between medical providers and families raising kids with Down syndrome.  I have had the opportunity to speak in hospitals, clinics, and at conferences giving them a family’s perspective on how we received the diagnosis, sharing how the way it is told impacts us, and what it is actually like raising a child.  There is such a disconnect and misinformation still given to new families and families that receive a diagnosis prenatally.  60-85% of babies diagnosed with Down syndrome prenatally are terminated.  Tests are becoming so easy as a simple blood draw is taken in the early weeks and I am sad to know that many of these precious babies that are fearfully and wonderfully made like my son are killed.  One of the labels I didn’t know I would receive when I became Jack’s mom was defender.  I didn’t know that I would have to defend that his life is worth living.  How many of these babies are terminated based on fear and what they think life would be like to raise a child with Down syndrome.  Fear.  That is why I will continue to share the joy my son has shown us and how his life has positively impacted ours for the better. He has made me see life in a much more beautiful way and as I closed out my letter to new families I will close my time with you like this…

My prayer for new families is that they will take the time to grieve the baby they thought, and love the baby they were given.  My precious baby stole my heart, stitched it up with a much stronger, more beautiful thread that is a much better masterpiece than I could have ever imagined myself.

Thank you.