Trailblazers

Trailblazers

Recently logged on Mike's facebook page. I do this from time to time and yes I know it is cheating. Over a year ago I decided to withdraw from facebook and every now and then when I need a fix I will vicariously live through Mike on facebook. While on the social media time-sucker I looked up Born this Way from the A&E network. This is pretty crazy but I remember when Mike and I were in the hospital post-delivery room the Season Premier was the day after Louisa was born. I remember smiling at Mike and wishing we had cable so I could watch it.

During the episode Megan's mom, Kris Bomgaar shared Megan's birth story. She was 23 years old and found out about Megan having Down syndrome and a serious heart condition in the same day. While Megan's mom was sharing her birth story I was weeping, of course, because that is what I do. It takes me back to our story, not only the day I met Louisa but the serious heart condition we faced and the nagging fears of surgery. After listening to her story I was filled with an undying gratitude.

When I was pregnant with Louisa I found two blogs that rocked my world. When I was feeling particularly scared I would open up these blogs and allow myself to be reminded I was not alone. The first is written by a beautiful brave Momma, Kelle Hampton. Her blog is at Kellehampton.com. As I read Kelle and Nella's story for the first time I was comforted by the raw honesty of her words. Kelle is so genuine and brave. Her vulnerability shed light on my grief and 'loss'. I realized I was not alone.

The second blog revealed itself more as a divine intervention. While pregnant with Louisa I would  incessantly google the words 'Harmony Trisomy Test: False Positives'. The Harmony test was the non-invasive blood test I took to see if Louisa had Trisomy 21. If you haven't read our Diagnosis story you can find that here.(It is a very long emotional post... consider yourself warned)
After weeks of my unsettled investigation on the statistics for False:Positive test I came across this blog, News Anchor to Homemaker.
I was drawn to Jill's story and her faith. At the time I had not found a lot of reading material that included ones faith when talking about Trisomy 21 (Down syndrome) because it is a 'thing'... a chromosome issue. I was finding article after article from the medical perspective and finding very little from the eyes of a mother. When I found Jill's blog I was late in my third trimester and I remember clinging to every word. My elevated frustration towards the Lord had lessened and I was ready to listen. After reading her blog I felt ready to fight for my child and her future. I felt excited to meet Louisa and see how she would impact the world.

That is why I have so much gratitude to those that have gone before me. I am having a hard time finding the words to express my appreciation. I think about Traci and Emily Brewer. Traci is the director of DSACK, Down Syndrome Association Of Central Kentucky. I think about Kris Bomgaar and Megan. I think about my friend Morgan Schafer and her daughter Gracie. I think about therapist that have pushed for early intervention for our babies. I think about Doctor's that specialize in Down syndrome. I think about our Cardiologist who when asked by my husband, "What if she does have Down syndrome?" looked at him and said, "You will be her biggest advocate." I am so thankful we were protected (mostly) from Doctor's encouraging us to abort our baby or give her up for adoption. I am grateful to our pediatrician who measures Louisa, solely on the typical milestone scale even after I tell him it is okay to measure her on the Down syndrome scale.

I often hear stories from friend's who now have children with Down syndrome in their 20's and some of the issues they faced. This journey has been difficult, yes, but if I am being honest, I wouldn't even know where to start fighting for my child without these resources. Signing Louisa up for a Medicaid waiver was insanely complicated but overall I have not had to fight like parents before me. I was gifted with a great First Steps Case Manager and OT. We have an incredible Cardiologist that loves her job so much she is 80 and still sees patients. Louisa is currently in an exceptional daycare and on the wait-list for the Child Development Center of the Bluegrass where she will be taught with children that have special needs and typical children.

Thank you! Thank you to all that have gone before me and fought hard for your child(ren). I am thankful for the hospitals that have taken great care of L. I am grateful for the other new mommas that have babes with Down syndrome that I can turn to when I have questions. I am grateful for the students and families that have fought, hard, to enforce the IDEA and the judicial interpretations that have been won through the Supreme Court. Thank you for fighting for the education for your student because of you I have an easier path and I have courage to fight for the best opportunities for Louisa. I am grateful for the real words said on the blogs I found in the darkest days. I am grateful to all that read our blog and support our little family. Thank you for your kindness.