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.

When the Bubble Bursts

When the Bubble Bursts

Recently our little family of three took a vacation to Destin, Florida. Mike and I had planned the trip long before Louisa was born and after our naiveness wore off we realize why new parents don't often take vacations. The trip was a perfect storm of adversity and strain. Louisa got sick prior to departure and after a visit to her beloved pediatrician it was confirmed she had an ear infection. We hoped for the best and still proceeded with the plan.  

We tried to take walks on the beach and go out to dinner but it typically ended with Mike and I taking turns inhaling our food and Louisa yelling in discomfort. After a couple days in Florida I started to feel this weight on my shoulders. I couldn't explain it. I started to feel insecure. In Lexington we are in a bubble. We have our family and then we have our friends, which I consider them just an extension of our family. People know Louisa and love her regardless of the Downs syndrome. While we were in Florida I felt like I had to explain her to the servers or people on the beach. I felt like I had to protect her from their judgements or negative thoughts. I was in the midst of some serious spiritual warfare and was failing to lay my insecurities before the Lord.  

Towards the end of our trip after sleepless nights and stress Mike sent me to get a massage. The massage was by far the best massage I had ever had. As I opened the door excited to share my experience with Mike I was startled by a big, "Surprise," coming from my husband and some old/new friends. 

Mike had arranged for Morgan, Chad and Gracie to come and spend the last three days with us at the condo. I couldn't have dreamt of a better surprise. Morgan and I went to middle school and high school together and after Louisa was born we reconnected. Gracie is their 4-year-old (soon to be 5) daughter. Gracie has Down syndrome. Gracie instantly became my new best friend and watching Morgan be her mom was incredible. I consider the timing of their presence a divine intervention. I saw all of Gracie's abilities and felt so encouraged. I saw her momma give her independence and grace. It was good for both Mike and I's hearts. 

After saying good-bye to our sweet friends we began our journey home. As we drove towards Lexington I made the decision that I was going to try harder. I was going to push harder. I was going to stop failing to parent my child and do whatever needed to be done. As I played with Louisa in the hotel room I felt shame for being insecure about her having Down syndrome and again decided I wouldn't fall into that trap again. I decided I would be better. Oh the pride that was pouring out of my soul covering up my need for the Cross. 

After getting back to Lexington I realized I needed like 45 more hours of sleep. Unfortunately, the extra sleep didn't happen and we started our normal work/daycare week. Louisa started daycare at Milk and Honey in Lexington. Every morning when I drop her off her teacher glows with excitement and joy. At first dropping her off was terrifying. Would she eat? Would she sleep? Would she have meltdowns? Would her teacher hold her and soothe her? Would she be taken care of? I soon learned the answer to all of my apprehension was YES. Yes she would eat. Yes she would be taken care of. Yes she would have meltdowns but yes she would be soothed. Ms. Rebecca made it easier and easier for me to drop Louisa off because I trust her with my whole heart. She loves Louisa. She is genuine and loving. I couldn't have dreamt of a better surprise. 

Even though God was continuing to protect our little girl and provide her with the best care I was still discouraged. Sunday night I felt defeated and grouchy. As I listed, in my head, my insufficient attempts of the day I started to cry. I started blaming Mike. I convinced myself that I was the only one that cared about Louisa's progress. If he cared more Louisa would be rolling over and sitting up. I feel sad to admit this to you all but it is the truth of my dishonoring flesh.

Monday morning we had Louisa's Occupational Therapist come to the house for her appointment. I confessed to Jessica my discouragement and doubt. Jessica graciously listened and offered encouragement. All day I just kept thinking; What am I doing wrong? How can I be better? How do I motivate this child to push herself? Tuesday evening L and I were finishing up her bedtime routine. If you have spent any time at our house in the evening you know I am a little bit crazy about bedtime. Our bedtime routine serves many purposes but it is also my most treasured time with my girl. I laid L down on her blanket on the floor and went to the bathroom to fill up her diffuser with water. As I walked back in her bedroom I had to do a double-take, L was on her belly. BUT WAIT... when I left the room she was on her back?? It was probably just a fluke thing, every now and then she can roll  if she is on uneven ground or has a bit of assistance. I rolled her onto her back and turned on her humidifier and plugged in her diffuser and as I turned around and she was pushing herself onto her belly from her back again. WHAT?? Did I just imagine that? I laid her on her back again and this time I sat and watched and sure enough this little girl was rolling! I couldn't have dreamt of a better surprise.

Not only was the little girl rolling but she did it at home with me! She hadn't done it at daycare that day! Tears filled my smiling eyes and I held Louisa close. I am so sorry, I whispered, I am so sorry for making it about me. I closed my eyes and thanked God for continuing to humble my prideful heart and not giving up on me.  The fact is I can do everything on my own accord and still fail. I can push, get frustrated, and plead but it isn't about ME. I could do everything 'right' and still fail. I could do everything 'wrong' and succeed. I pray God continues to open my eyes and humble my heart. I sometimes feel like I don't deserve to be this beautiful girl's momma but I am so grateful I am!