Genetics

 "For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them." 

Ephesians 2:10

A few weeks ago we learned that God is taking our family on a new adventure and opening us up to a new community of people that reflect His image.

God created our sweet Veya not only with AVSD but also with Down Syndrome, which means she has a third copy of the 21^st chromosome, also known as Trisomy 21 or T21.

Life has radically changed but in the most beautiful way.  What I’m learning is that we will change a lot, our perspectives will shift, what is important to us will be made very clear and what is not will quickly fall to the wayside.  That little 6lbs 14oz baby girl that was born 2.5 months ago, has already been helping us see life the way we were always meant to see it but just got clouded along life’s way.  We will learn to love better, Veya’s already been teaching us that.  She’ll love us in such a tangible way that we’ll feel it and will long for this type of love for all our relationships. 

Without a doubt I know we are going to become more present because she will require it but it’s going to spill over into the other areas of our life as well.  God is going to make us a better mom and dad through Veya, and it will become obvious the gaps we’ve had and we will work hard to fill them right away.  It will be so worth it!

We’re going to get to watch the purest love unfold between Ivylee, Irelyn, Lincoln + Veya.  They will be everything she needs, and she will be everything they need.  We’ll fall more in love with them as we watch them care for and about people with special needs.  It will mold our hearts differently and we will strive to be more like them.  (You can feel it already when they have visited with their baby sister)

We also received Veya’s bloodwork that was sent out to Europe.  They were looking for any underlying secondary genetic conditions for her under the cardiomyopathy umbrella (conditions that specifically affect the heart muscle). They wanted this test done to hopefully help explain why her heart pumps so weak.   The results came back inconclusive with just one small area in possible questioning.  They are going to take a closer look at what is called Mitochondrial DNA. This relates to Veya’s cell’s energy production.  They will compare her numbers to my numbers as this is genetically related to the mother’s side.  If our numbers match/similar, then they can close this case and confidently confirm that she does not have another genetic condition.  If our numbers are significantly different then it could indicate that something else is going on and they will investigate further. We have to wait about two months for my results to come back.  Genetics did say to us that they don’t suspect there to be any secondary condition for Veya and we pray for that too for her.

Life is going to be filled with so much more peace and joy, despite us being in the trenches right now.  Most days I can’t believe God has entrusted us with this beautiful soul…. she’s perfect in every single way and being her mom and dad is such an honor.  Lord willing, some of our very best days lie ahead and we look forward to those days with excitement.