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! 

We call it 'Louisa time'

Louisa Jean Riley 6 Months Old

I never imagined our first baby would have Down syndrome. I never imagined our first baby would need open heart surgery. I never imagined our first baby would be 'failure to thrive' and require a feeding tube. I, also, never imagined the lessons I would learn throughout this first 6 months of this sweet baby's life. Being a parent is a very humbling experience. I knew I would learn to be patience but I never imagined just how patient. 

Louisa has had an NG tube since she was 2.5 months old. I remember the day her pediatrician looked at me and said, "It is time. She will need to get the feeding tube Hilary." The lump that formed in my throat was so painful. The phrase, "You just failed your child," scrolled on repeat through my mind. I pushed down the painful feelings and packed our bags for the hospital. I grabbed my fake smile and 'armor' and accepted the fact that Louisa would have a feeding tube.

Prior to Louisa's surgery Mike and I constantly looked to the surgery for relief. The surgery was our spot of light in the dark cave we had been stuck in for months. I was convinced that after surgery our lives would change immediately. I kept picking myself up off the ground because it WAS going to get better. I felt strength because there was an end to our mess. 

When we brought Louisa home from Cincinnati and there wasn't instant gratification I was broken. It wasn't supposed to be this way. Hadn't I been strong enough God? Hadn't I been patient enough God? Hadn't I glorified you enough God? Hadn't I loved this baby enough God? Had I not leaned on you hard enough? Had I not prayed hard enough? My soul was hurting. My heart longed for a 'normal' life. I was stuck in 'tunnel vision' (Val Clark, Fort Wayne Young Life talk).

I hated the NG tube. I hated feeding Louisa with syringes. I hated washing thousands of syringes everyday. As much as I hated the NG tube I wouldn't even talk about a 'G' tube. (If you are not familiar with a G Tube click this link Kids Health G Tube) Last week I could not shake the thoughts of Louisa getting a G tube. Several people asked me about the possibility of a G tube and I, myself, thought it was the path Louisa was taking.

Then a miracle. Louisa started taking more and more of her bottle orally. The first time she drank all 4 oz herself I sobbed. I was holding Louisa and walked into the kitchen with tears in the eyes and whispered, "She just took the entire bottle herself." Mike's eyes grew big and he smiled and said, "Then why are you crying momma?" It was the relief I had been deeply longing to receive. The following day Louisa took all of her bottles orally. Mike and I tried not to get overly excited because nothing is guaranteed with this child. By day 3 we decided to take our her NG tube and I am thrilled to report she has continued to take all her bottles orally.

Praise you Lord. Forgive me. Forgive my impatience. Forgive my stubborn selfishness. Forgive me for not believing you were holding me the whole time. Forgive me Lord. 

The New Heart

The Progress of Joy

This journey is unreal. I am humbled constantly by the support and encouragement of friends, family, and even strangers. Today I had to take Louisa to her cardiology appointment by myself, which can be a challenge. We had to get an x-ray first and then go to the other side of the hospital campus with the images to our cardiologist. I was feeling a bit anxious about having her by myself but as I waited with her I was offered such grace and mercy by complete strangers. 

This journey has been refining. This child is OUR child there is no doubt in my mind. She is stubborn and strong willed. She is sensitive and sweet (when she wants to be). Her smile is perfectly timed. She recognizes my face and that brings this momma a lot of joy. 

This journey is hard. We have been through the ringer. Louisa has been through the ringer. We had an appointment with a GI doctor last week. The GI doc thought she may have a dairy allergy and we started her on a specialty formula. The first 3 days were bliss. She was less fussy and seemed to tolerate the formula better but then the bliss ended in 2 nights straight of 3 hours of sleep and a screaming baby. I get up so much in the night that we brought her back in our room and she sleeps in the bassinet. Side note: She is 13 lbs 7 oz so she "fits" in the bassinet but barely. Every now and then when she starts to stir I will just see little feet or tiny arms kick high in the air over the bassinet. 

This journey has been promising. Louisa's new heart allows her so much more energy and strength. I believe she is learning quicker too. This picture was taken at one of the thousand doctor appointments we have had and she is SO close to rolling over. We are working on arm strength so hopefully soon she will be moving and grooving. 

This journey has been dark. In the nature of honesty I sometimes feel insecure about her feeding tube. Prior to surgery I had an excuse as to why she refused to eat and now that she still refuses to eat consistently without explanation I have to just accept it. Every time I look at that tube I feel like I am failing my child. Every time I am forced to syringe feed her I feel like I am depriving her of thriving. I recognize this is an issue of pride but I sometimes just can't shake the feeling of failure. I sometimes cry. Sometimes I cry and beg Mike to explain why this journey has been so difficult. I sometimes cry and apologize for not being able to fix any of it. 

This journey is OUR journey. This season is a season. It will not last forever and I have to keep that perspective. This journey is tough sometimes but even in the darkest moments we are given small glimpses of light and hope. 

Thank you for reading this. Thank you for walking through this journey with us. Thank you for praying and thank you for loving us. 

The Day I Cried in Walmart

Last week was a tough week. After leaving UK Children's hospital I came down with strep throat. YEP. Add it to the list of yuck from last week. Mike and my mom took care of Louisa throughout the night(s). I had to wear a mask and run to the doctor before the holiday weekend. I started an antibiotic but still had a 103 degree fever. Saturday I woke up feeling better but then fear set in. My mom was going to have to leave and go back to Iowa. She graciously took an additional week off of work to help us, and let me just reiterate WE NEEDED her. I started to feel sick to my stomach just thinking about not having her help. On Saturday Louisa seemed the same. Very upset. She was pooping so much her bottom was getting very raw, and she was not sleeping. I was still sick, my mom was leaving, and my husband would be gone for minimum 7 hours to meet my brother half way to drop my mom off on Sunday. Saturday night my mom and I prayed over Louisa and we read scripture. On my knees I begged God to give me strength, wisdom, and patience. The Lord is the only one that can heal her. Trying to live in that truth I still couldn't eat because I was sick to my stomach.

Sunday morning my mom got up early with Louisa so that Mike and I could sleep in. The morning felt too fast and I wasn't ready to say good-bye. I held Louisa and looked at my mom, tears filling my eyes and thanked her for being such a huge help. She and Mike left to meet Blake in Mt. Vernon, IL and Louisa took a nice hour long nap. I whispered soft prayers all afternoon and felt a little lighter and a little stronger. I will say I could hardly talk to anyone on Sunday without just bursting into tears. My brother and my dad tried calling me but majority of the conversation was me crying. I was scared. 

Prior to Louisa's heart surgery I had been told by SEVERAL people that the surgery was life-changing. Almost all of them said, "It felt like we brought home a different baby." No one really told me about the recovery process and what to expect because the short recovery was so worth the "new" baby they all experienced after the heart repair. In my moments of fear I wasn't seeing the joy everyone had told me about and I was getting more and more discouraged. My baby wasn't sleeping through the night anymore and she was in severe pain. She wasn't smiling or laughing but she was screaming a lot louder than she had before surgery. Again, I was scared.

My Aunt had told me about a Similac formula that she had just tried on her grandson and thought it might work for Louisa. I called Walmart, made sure it was in stock, and got Louisa in the car and went. Walmart is literally 1 minute away from my house so I said to myself even if she did scream the entire time, it was only 1 minute. However, Louisa didn't scream. She was perfectly content back in her car seat. We walked around Walmart for a bit and I picked up a couple things. It was a Christmas (week late) miracle. I walked up to the check out line and the sweet cashier looked at Louisa and looked at me. 

She then said, "Is she sick?" 

.... my eyes welled with tears. I croaked out, "She is, she had open heart surgery a week and a half ago and things have been really hard." Tears spilled over my eyes and down my face. The cashier's hands covered her mouth and it seemed like she lost her breath. Her eyes grew softer and tears started to form in them. She said, "I am so so sorry. I am so sorry for what she has been through. I am so sorry for what you have been through. I will be praying for you both." I couldn't stop from crying believe me I tried. I wanted to fall to my knees and weep. I wanted to cry loud tears. For the first time I was actually processing what Louisa, Mike and I, and our family had just experienced. That poor cashier did not have a clue what she was actually asking me. Sometimes God uses people to give us the grace we need. Sometimes He uses people you never would expect to help us cope. Sometimes God uses complete strangers to touch our hearts and challenge our perspective. That is the beauty of how God works. I am so weak and so broken. I am so glad He is in control and I am not.