A guest post by Jen Jacob, compiler of the book {Unexpected} and Vice-President of the Down Syndrome Diagnosis Network.
I thought I knew my life’s path many years ago. Become a teacher. Get married. Have a family. Live a good life. Not anything too crazy. My childhood dreams of becoming an astronaut had long ago given way to reality and the love I developed for education. Not just a love of kids, but a deep desire to guide, educate, support and ignite that sparkle of information as it became a part of a foundation of understanding.
I loved my work. Before becoming pregnant with our third child, I was working as an Instructional Coach with teachers. I liked having conversations about teaching and learning. But, knowing the time and effort I was putting in at work, I didn’t feel that I could do my best at work and at home with another child. After working for decades, I decided to stay home with our new baby and older kids, ages 6 and 7. This was quite a shift, but a welcome one and I had found a groove when we decided to have a fourth child. The younger two would be just 16 months apart and I was looking forward to watching them develop a friendship like the older two had.
All my thoughts for the future were put on hold one day in August of 2012. At my routine anatomy ultrasound, a soft maker for trisomy 21, Down syndrome, was noted. I would be 35 years old next month and “officially” Advanced Maternal Age, but I never guessed that I would be in this situation. Over a few weeks time, I went from scared, confused and crushed to a place of acceptance when the genetics counselor revealed the outcome of our Verifi test: our son very likely had Down syndrome. I was in tears as I called my husband with the results, although this crying was more a sense of relief in having answers than of the unknown and worst case scenarios I had imagined. Our baby boy would teach us all about what an extra chromosome really meant.
I had an incredible system of family and friends to support me as got closer to meeting our new baby. My fears for my son were two-fold in the final week; medical concerns and the future. By the time he arrived on December 28, 2012, the relief felt from his passed heart examination trumped most all my other concerns. Owen was adorable. He ate well. He had red hair just like his siblings. He was ours and perfect.
Within weeks of his birth, I could tell as a seasoned mom that things would be a bit different in this new child journey. Lots of appointments filled our days to begin, but tapered off as he was cleared by specialists. He was doing well, but there were several things that were just different than with the older kids. I sought out moms through Babycenter and began a Facebook group with other moms new to the DS journey. These moms were a lifeline to me in a time where I often had more questions than answers. The love and support they have given is irreplaceable and made an enormous impact on how I have dealt with having a child with Down syndrome. I now have an extended family of moms and children all over the world to lean on and support.
Today, I have come far in my journey of accepting a diagnosis that was so scary and unknown. I have compiled {Unexpected} a book of diagnosis stories from families all around the world. Recently, I finished the Kindle/Nook ebook and print versions for other moms to access. Our hope is that they may find comfort in knowing they are not alone in their thoughts and feelings.
I am also a part of a new nonprofit group, Down Syndrome Diagnosis Network (DSDN). We launched the website and our Facebook page on March 21, 2014 and aim to inform, connect and support families with a new diagnosis. We have small Facebook groups for new moms to connect and are working to assist patients in providing feedback to medical professionals about how the diagnosis was given. Check out this great article about our work.
Although my life’s adventure is not following the exact path I thought it might, I truly feel this was in the cards for me along. And I feel so blessed to have had the opportunity to learn and grow so much through my children, especially my extra-special, Owen.
Read my family’s full story from diagnosis to now @ http://blessingsbeyondtheordinary.blogspot.com/
You can buy {Unexpected} here.
Bio
I share my life with my husband, Brian, and our four children – Kate, a musically talented redhead; Andy, a funny, witty guy; Colton, a rambunctious, adorable preschooler; and Owen, a sweet (and feisty) toddler who happens to have Down syndrome. A former educator, I now spend my days with our children. In addition to (sometimes) blogging @ http://blessingsbeyondtheordinary.blogspot.com/, I am the Vice-President of the nonprofit organization, Down Syndrome Diagnosis Network and compiled the book, Unexpected. My ultimate goal, outside of raising my family, is to support and connect others as they travel life together and inform parents about what life with DS really is like.
