Welcome to Holland

On our way to Minnesota, while driving through Wisconsin with no reception, the Lord allowed for a phone call from the genetic counselor with the results from our Non-invasive prenatal test (NIPT). She confirmed what we had been preparing for, there is a 99% chance our little Beau will have Down Syndrome.  Taking one step back to our doctor’s appointment, the cardiologist told us a child with AVSD has about a 50% change of having DS and when you add the second defect (TOF) the chances increased to 90%.  Our doctor had told us she has never seen a child with both of these heart defects and not have a chromosomal anomaly. So, we had been preparing for the news since our last appointment. We had been praying that the doctor’s call would come at a the perfect time for us to discuss when and how to tell family while we were in Minnesota. 

At the appointment with our cardiologist, she mentioned an analogy about how when you are pregnant it is like planning a trip to Italy but when your baby has a special need, you end up traveling to Holland instead.  A few days later, a friend from Michigan mentioned the same poem to us so we wanted to share this video with you.  The poem helps to explain how many people with special needs children feel when receiving news such as ours.

Welcome to Holland by Emily Perl Kingsley

https://www.youtube.com/watch?v=r15PuYoID94

You might be wondering how we are doing... Initially there were lots of emotions involved when we found out DS could be a possibility (weeks ago) but since then have really had time to pray, process, research, and discuss with others what this will mean for our family.  We definitely are feeling a range of emotions as no parent expects this news but we really feel the Lord has had His hand in our lives leading up to this point.  Marisa was brought back to a favorite verse from when Andrew was at boot camp --1 Corinthians 2.9 says,  No eye has seen, no ear has heard, no mind has conceived What God has prepared for those who love him. More clearly then ever, we see God’s path that has lead us to this point.  We know our choice to become a military family was from the Lord as Beau’s health care needs are 100% covered and secondly, the Lord led us to Upward Church where Marisa has found other women who are in similar circumstances to give her support.  

It has become very clear to us that not only have we been prepared but also our family.  Andrew’s mom has worked with Special Education for many years, Andrew’s sister Allison is a Special Education teacher, Marisa’s sister Jilayna was a PCA for a young adult with special needs, and Andrew taught adaptive PE to special needs students in high school.  Marisa’s aunt Sue also has a nephew with DS and we were given the opportunity to talk with his mother who is already showing to be an excellent resource to us. She mentioned a little twist on the earlier analogy of Welcome to Holland in saying that we are still going to Italy but instead of traveling the country via public transportation, we are now going to be backpacking, seeing all of the same areas of Italy but at a slower and often more challenging pace. 

Some of you may not be as knowledgeable as others about Down Syndrome so if you have a few minutes, watch this great video explaining more about what a life with DS looks like and how you can be a friend or family member to Beau.

Just Like You:   https://www.youtube.com/watch?v=5M--xOyGUX4

As we were telling family and friends, many of the same question arose that we want to address right away to eliminate any confusion or misunderstanding.  

• What causes DS? It is an extra chromosome of genetic material on chromosome 21, also known as Trisomy 21 (three 21 chromosomes). It is caused by a mistake in cell division during the development of the egg, sperm, or embryo.  Down Syndrome is not inherited, nor was it caused by anything either of us did... we were simply chosen to be parents to a sweet boy with Down Syndrome. It is genetic meaning that it is a condition involving the makeup of his genes.
• Will you have more children?  Right now we don’t know what it will look like raising Beau but the option is not off the table.  We both desire to have have another child in the future.
• How will this effect Andrew being in the Navy?  One of the benefits of being in the Navy is the Exceptional Family Member Program.  The Navy has special resources for families with special needs children. At this time, Andrew does not know how this will effect his deployment schedule or where Andrew can be stationed in the future.

There are a few things we would love for you to keep in mind...Down Syndrome is not a disease, it is how Beau will be born.  As he grows, we will need to focus on the positive, little things.  We don’t want you to feel sorry for us; this is going to effect our family in so many positive ways.  The biggest thing you need to know is we are remaining an open book; we want you to ask questions and hear information straight from us. We want to bring you in this experience with us and generate awareness for Down Syndrome. 

As you continue to lift up Beau in prayer for his heart, we would also ask that you pray for his internal organs to be formed properly. Children with DS often have gastrointestinal problems. In addition, we ask you to pray for his eyes, ears, and mouth as babies with Down Syndrome have problems with sight and hearing.  DS children have delayed muscle tone (hypotonia) which often effects speech and feeding. 

An second prayer would be for our jobs to be flexible and understanding with our circumstances as we don’t know what time commitments will look like when Beau arrives.

Lastly, you can be praying for us to continue to trust the Lord’s plan and follow His path one day and step at a time. We want to stay as positive as we can and keep from stressing about what the future may bring.  We continuously lift Beau in prayer and ask that God be glorified in our lives and others through our story.