Lady Bug

Rounding off the Halloween posts with probably my favorite costume yet…"Gabby The Ladybug!”

Why does this costume hit home a little differently?  The symbol of the ladybug represents a special angel who I believe has protected, guided and reassured me at uniquely opportune times throughout the past two years. She’s given me hope, peace and reassurance.  I’ve debated how to share this particular testimony and came across this beautiful blog post about the importance of sharing God's Work. 

“Sharing your testimony brings God glory. We’re not glorifying the struggle. We’re glorifying God in it. When you share your testimony, you showcase how God has made you more than a conqueror. You give Him more honor and praise by sharing what He has done in your life. ”Your testimony shows people that God is in the business of doing it again and again and again. Not just for you, but for anyone else. Sharing your testimony showcases the LOVE of God.-Tarah Lynn

I thought the above paragraph applied beautifully to my reason behind sharing this particular piece of Gabby’s story.  

OK on with the story Kayleen…It all began back in 2011.  Little did I know would be the year I met one of my best friends and shortly after became my life-long sister.  Quinn and I hit it off our freshman year of college, playing basketball together at Montana State University of Billings. Our similar tight knit catholic family backgrounds and unique sense of humor bonded us.  Quinn’s older sister Mairissa was diagnosed with cancer when Quinn was 15 years old.  I met Quinn when she was 18 and was lucky enough to know Mairissa for the last two years of her life. 

It was our junior year of college, the weekend before we left for California for the Regional Basketball Tournament I got a text message from Mairissa that read, “please take care of my girl for me.” At 20 years old my perspective on life forever shifted, my heart broke for my best friend and her family as I did my best to walk hand in hand with her as she navigated a new life after losing her sibling. Unknowingly this experience prepared me for Gabby as I grew an outsider's perspective and front row seat to life filled with grief, loss, empathy, faith and grace.  It dawned on me during this period that the world keeps spinning even when you feel impossibly stuck.  I’m not sure there is ever a black and white answer as to why this happened to such a lovely, god fearing, amazing family.  I’m not sure I’ll ever fully understand it, but I do know I have always felt there was always an innate, immeasurable reason Quinn and I became like sisters.  I just didn’t know at 20 this story would continue to unravel at 30.  

When I found out about Gabby’s diagnosis at 20 weeks along I was oddly comforted by the fact that if Gabby didn’t make it earthside I knew she would have an angel first in line to hold her.  I was supposed to be induced on March 8th to have Gabby, but she had other plans and my water broke on March 2nd.  Quinn was planning on flying down with my Mom on the 7th so she could be there for the birth.  After checking in at the Children’s Hospital of Colorado I was introduced to my labor and delivery nurse who would be taking care of me, her name was “Marissa.” Coincidence..no such thing.  “He has made everything beautiful in its time.” Ecclesiastes 3:11a (NLV) 

We had about five days to snuggle, love on, and trace Gabby’s perfectly unmarked chest before her first major open heart surgery.  I remember the morning of her surgery I went to use the restroom on the CICU overflow floor that I had been using all week.  It wasn’t until that morning I had peered up at the shower stall and noticed lady bugs scattered across the tile.  Quinn and her family had always felt Ladybug’s were a sign of Mairissa.  As tears streamlined down my face I washed my hands and noticed my bright red chest hives, I took a deep breath of courage to head back to our room and get ready to hand Gabby off to the surgery team.  

On surgery days they connect you with a “call nurse’’ to update parents the entire day of surgery.  Our call nurse called in sick that morning and her replacement just so happened to be named Marissa.  Quinn later told me she too felt like her stomach was in her throat when they made that announcement, truly what are the odds?  As if she couldn’t make it more clear she was with us that day she continued to show up…After the longest 8 hours of my life we were finally told we could walk back and see our baby.  Hand in hand with Corey we began to walk the CICU hall to the back corner room.  As we were walking I peered down and saw giant lily pads of lady bugs…my chest swelled. I said a silent prayer of thanks and was given the extra strength I needed to see my precious baby girl lying on the hospital bassinet hooked up to one million cords with her chest wide open.

Daily Devotional on the Morning of her first surgery.

Gabby spent 38 days in the hospital before they deemed her ready for discharge.  The night before discharge it’s hospital protocol to have parents do a “room in” to make sure they are comfortable caring for a child with specific medical needs after staying in the hospital for so long.  My jaw dropped when the shift-change night nurse came in to introduce herself on our last night there as “Marissa.”  The unbelievable thing about this, all these different “Marissa” encounters were different people.  I remember telling Quinn, “she's done it again!”  

The morning of our discharge we took one last photo in our hospital room and behind us the clock showed 11:11.  It wasn’t until a few months later that I started seeing 11’s, or numbers that added up to 11.  The number 11 has several meanings, but for me everytime I see it I can feel Mairissa with us. I googled if I was going crazy or if the number 11 did have some profound meaning and sure enough it’s linked to angelic, new beginnings and spiritual connections. I didn't notice the clock read 11:11 until one year after this photo was taken.

We had been home for about a month and a half with Gabby after her Norwood, when our cardiologist in Billings, MT felt like we better return to Denver for a more thorough checkup.  It’s kind of unheard of to go “home” during interstage.  With Gabby’s specific diagnosis they typically encourage you to stay near the hospital for the first two stages of palliation.  We luckily were able to hop on my Dads plane for travel which made her medical team a little more confident we could get to Colorado quickly.  The day we went back to CO, in June, Gabby’s O2 saturations started to plummet in the out-patient clinic.  The nurse care coordinator hooked her up to the pulse ox at the end of our visit just to make sure it wasn’t a fluke and after seeing her sats hang in the low 60’s being on a half liter of oxygen she said, “yeah you're definitely not going home.”  She’s always been a tough poke, but the nurse that came up to start her iv that afternoon was named…yes Marissa.  At this I wasn’t surprised by this anymore, I could feel the wave of relief that Gabby had extra help on her side.  The next day in the cath lab Gabby’s Pulmonary Arteries were ballooned and they placed a stent in her shunt.  We luckily were able to return home in time for the “Gabby & Banks Yellowstone Brave Heart Run” and stayed home for the rest of the summer until her Glenn in August. 

Gabby received her second open heart surgery on August 10th. It made me nervous because she was scheduled for the 11th, so when they bumped us up one day I couldn’t help but feel a little superstitious.  The surgery itself went well, but the post-op complications began on Day 3.  Gabby developed Chylous Effusions, which essentially means she had lymphatic fluid leaking between her lungs and chest wall.  We stayed in the hospital with her for 58 days. I can’t remember the exact day but it was at about week 4, they had us do the carseat test, we had the discharge paperwork filled out and were ready to leave.  Our night nurse came in to introduce herself as…yes  “Marissa.” (none of these Marissa nurses we had were the same either.)  When she said her name, tears ran down my cheeks as I told her Gabby’s angel story.  Together we cried because she and her boyfriend ran a youth ministry together and I think she also felt deeply moved by the situation too.  It was heartbreaking to find out the next day that Gabby’s x-ray showed fluid still on her chest.  However we didn’t let this deflate our sails.  For me it was simply a sign that He was still with us, walking hand in hand and that maybe he was trying to send us a sign that everything was going to be ok. 

“There is a special time for everything. There is a time for everything that happens under heaven.”  

This is where the story gets crazy.  After 58 days in the hospital it was finally our day to discharge.  I woke up excited that morning, but also feeling guilty for leaving some of our friends who were still in-patient behind.  What are the odds the day we discharged was on the same day as Mairissa’s birthday, September 20th?  I remember texting Quinn and letting her know, at this point it turned into a water works celebration!

Over the past year we have collected heart rocks and see the number 11 and are always brought a smile knowing she's with us.  My older daughters and I have been collecting heart rocks since we returned home last fall.  Oftentimes they find them without me and now it’s a fun surprise when they bring them home.  I found a perfect heart rock the day before we left for Gabby’s cat, mri and lymphangiogram in April of 2024.   I sometimes feel a little looney correlating all these signs to Marissa, but I can’t help but feel it has to be her.   This trip was scary as it determined whether or not we would continue to Gabby’s third stage palliation or if we would list her on the transplant list.   The day Gabby was getting her MRI and Lymphangiogram Corey and I went on a walk and he spotted a perfectly knitted heart hanging off the branch near the walking trail.  The heart itself had a note attached that read “ I need a Home! www.IFAQH.com.  I later looked up the website and it was a community of volunteers anonymously placing small quilted hearts around the globe to brighten the day of a stranger. For us it was just another God Wink.

I kept sharing all the “heart finds” with Quinn, I would see hearts in different places on some of our hard days with Gabby. I knew Quinn believed me but I think it was solidified for both of us after she had a conversation with one of her friends from her hometown. We will call her “Ali” to keep this anonymous.  Quinn’s friend Ali had a family member who had passed away and was seeking some closure by seeing a Medium.  Ali said in her session with the Medium, that a “young girl came forward, a close family friend, who passed from a terminal illness.” Ali knew she was referring to Mairissa. Once they confirmed it was her, the Medium shared with Ali that Mairissa wanted to pass a message along to Mairissa’s family…the Medium then told Ali, “she wants you to let her family know she is now coming through as..hearts.”  There is no way the Medium could have known about Gabby and my connection to Quinn.  This still gives me goosebumps.

Most recently we have had a few scares with Gabby.  At the end of August Gabby wasn’t feeling well so I took her in to see her cardiologist so he could do a quick scan, and echo.  As the nurse was getting her vitals, Dr. Bigg (Cardiologist) was playing a youtube video for Gabby on his phone to help calm her down. Out of nowhere his phone went black, he looked at me and I looked at him because neither one of us touched anything. As he clicked his side button the time on the screen flashed 11:11. Dr. Bigg and I both made eye-contact as I tried to hold my tears back. It’s hard to describe the magnitude of peace that flushes over your body after getting these God Winks during these critical moments of fear.  There have been so many anxiety ridden days over the past two years, so during a heightened moment when you feel like your own chest is going to crack open, it's a solace of peace that is welcomed. It gives you an extra sprinkle of hope you need to keep moving forward. 

I've shared these little “God Winks” with my husband who listens but I never knew if he truly believed in them like I did.  It wasn’t until her latest hospitalization in October of this year that we were sitting in the emergency room with myself, Corey, two nurses holding Gabby still so they could start her IV.  Right before they began to poke her, Corey and I connected eyes and he nodded towards the clock that read 11:11. The more I’ve looked into these instances, I am reassured by the understanding that God validates us by knowing us intimately and personally. He knows when you need a nudge of courage.

During really hard moments it’s easy to cast doubt.  These testimonies have kept our wheels turning and keep filling our tank of hope. The ones I have shared are the ones that easily come to mind there have been an abundance, which I am grateful for.  When you have a child with a medical diagnosis like Gabby you have to look at every angle and be somewhat of a realist but also be optimistic even when you feel you're against the odds.  I often wonder how all of this will affect Daisy and Della.  I am thankful I have a kindred connection with Quinn as she's been a great voice of reason and advocate for me to lean on as I try to best parent my other two children who carry the heavy role as “medical siblings”.  “We don’t meet people by accident. They are meant to cross our paths for a reason.” –Unknown

“No need to feel you have to measure up or become a certain person to gain His love. He tells us to come to Him with our whole hearts and seek Him, and He will remind us that we are so loved and valuable to Him (Matthew 10:29-31).”

We are God's instruments. We are His hands and feet. We are His mouth pieces in the world. And so if we don't share our personal testimony, we fail to allow the world to know that God is alive and he's working in the lives of people today.

This painting is in one of the hallways on the floor of the CICU. It always made me smile when I walked by and once I read the the little note next to it I knew it was just another sign for us.