FcancerLLC@gmail.com 305.998.2797

A Caregivers Testimony – ACTS Community


Hello my name is Kacie Carlson and from St. Joseph.  I’m here to talk to you about the “C” in ACTS – which stands for Community. Community it’s a concept we speak of often, but what does it mean? What does it really look like to live “IN” community?


 However, when praying for the right words in my talk, something kept referring me back to the word “knot” and so when looking up the definition of the word, this is how it was described:


Knot –


1. A fastening made by tying a piece of string, rope or something similar


2. A tangled mass in something


3. An unpleasant feeling of tightness or tension in a part of the body




By now each of you may have tied a knot in hoping you will be free from an unpleasant feeling of tightness or tension in a part of your  body, mind or soul. I can’t tell you how many knots I’ve wanted to shed in my own life, knots of frustration … confusion … and uncertainty. I knew God had a plan for everyone, but at times I would question what my  purpose in life was. Often, I would wonder how God could possibility turn my knots into passions or gifts and lead me back to the community I was called to be a part of.


There is an old African proverb that says “it takes a village to raise a child” addressing the significance of community. This is not to say my parents weren’t capable of raising me, in fact growing up as an only child was simple. I had zero knots, as if it was a fine string floating in the air.  My parents and I always had a very special bond, together we would laugh, cry, tease, argue and love but most importantly we were always together. At a young age my parents allowed me to be a part of my school community whether  it was an after school sporting event or my mom signing me up for the next pageant, (jokingly today, my dad says: my mom shoulda had me in the kitchen more) but never-the-less, I grew accustom to my “only child” lifestyle and became very familiar with how I wanted my own family in life.


My parents were my best friends and I was complete as long as I was sharing life together with them. They always knew how to untangle my knots here and there and they were the only community I ever wanted to be a part of.


But then, as life happens…


 I met a boy …


 It became a regular ritual and before long, I was being asked the question of “will you marry me” and shortly after our wedding I was expecting. I began to develop Toxemia toward the end of my pregnancy and ended up having an emergency C-section to where I would deliver a 2pd and 10oz baby boy. The next few weeks we would find ourselves meeting with a neurosurgeon, he began to explain the abnormality  in his ventricles, which lead him to believe that our baby had “Hydrocephalus”. My first reaction was hydro-what – “my heart stopped.?” There was nothing more heartbreaking than seeing my baby hooked up to countless number of tubes while looking up at me before being wheeled off to surgery.


Was this life or death for him? I didn’t know. Could he possibly be affected with a disability his entire life and have no chance at a normal childhood? I didn’t know that either.


I knew I was a good mom with a very active interest in keeping my child safe. But no amount of good I could do could change the fact that I’m not in control of this situation. I was, in fact, helpless and very much alone. If something was to happen there’s a slim chance there isn’t anything I could do to prevent it, because I didn’t want to hear, “its okay. You’re an amazing mother. You got this.”


Because I didn’t.


The truth of the matter was I didn’t have anything together, and what was supposed to be the happiest times of my life now hung a cloud of self-confidence and fear. I became very disconnected with my husband and I confess looking back, I was also very disconnected from God. I struggled to comprehend how to pray, the importance of what Catholics believed and the responsibility to my Faith. Life happened, and my Holy Spirit got pushed to the back burner time and time again. In my mind, as long as I had my parents, they were all I needed to help me get through life. I had come to what I thought was the end of my knot in the rope, and I was tired. Tired of not being noticed in my fairytale bubble I viewed a marriage should have and I was tired of fighting the hurt within me, but as you could guess, there were two people I could always count on through hard times.


My parents…


Over the years, they noticed the emotional change in my life and my dad had suggested that I sign-up for an ACT’s retreat and thought it would be to my benefit for a few situations I was currently facing. When asked what an ACTS retreat was about, the only thing he said back to me was – “you just have to go”. I would ask him questions such as:


  • What do you do there?

  • What does River Rules mean?

  • Do I have to speak in front of a large group of people?


The only thing he kept telling me was: “you just have to go”. I wanted to make my dad proud of me so I signed up and hoped for the best. Sure enough my prayers were answered and before I knew it my cell phone was being passed to the left.


Then my thoughts got the best of me as I looked around the room:
“I don’t know these ladies”…”I’ve seen some of these women and they have never spoke to ME”…”I don’t fit in with these people” … “they’ll blab my business all over town” I sat at my table and tied my knot but didn’t want to talk about it, and so what did I do? I sat there and didn’t say … one…word.


Continuing forward toward the end of my retreat, I couldn’t come to terms with untying my knot. To me, it was much deeper than anyone could ever imagine. It wasn’t until the last day each one of my Sisters in Christ would untie my knot. That truly was one of the best highlights of my retreat and  I will never forget it. At the time, I thought ACTS would either make me or break me from my own free will and not Gods. I failed to see how God was not only calling me to be a part of such a wonderful community, but at the same time, he was preparing me for what my future would hold in the next serval months to come. I admit I was a hard nut to crack but leaving the retreat I was on a Holy Spirit high until shortly after, my world would be turned upside down and God would put my Faith to the test.


And then it was a Friday.


I was anticipating a normal weekend after work that Friday morning.  I was getting ready for work when my parents came over and asked if I could spend the day with them but the look on their faces I could tell something was majorly wrong. My mother’s voice trembled as she began to say Kacie: they found a mass in me last night at the ER. We need to get to Houston.


I don’t really remember the faces we came in contact with that day, I couldn’t tell you the first thing about the very cold community my parents and I were now a part of.  But what I do remember was running out of a tiny consultation room after hearing the words : your cancer has spread through-out your body and we don’t feel comfortable going through with your surgery.


They sent my mother home to die without any further visits or test intended. I can’t even remember the ride home that night, in fact, I couldn’t even pick myself up off the floor board from being weighed down by the tears.


And there it began … we went home and I sat by my mother’s bed cradling her hand every day, telling her how much I loved her as we began to plan her funeral day-in and day-out. The uncontrollable crying I would experience during these times would include  my 9 year old son trying to pick me up off the floor after collapsing while  thinking how I would no longer be able to call my mother 20 times a day or how she would never be able to see her grandson grow up. Plus the innocents of my son made it that much more painful for me to bear.


“Mommy, Is nanny going to die!?”


“Mommy, do I have to go to nanny’s funeral!?” …


As a mother, how could I ease his heart with the right answers when I was dying from a broken heart myself?


The next few days would go on like this as my mom reminded me she would always be around.  She wanted me to see her in the trees or in a flower growing strong, but I wasn’t ready to see her in the simplest things  in life yet. I spent time in her closet burying  my face in her clothes, and when trying to escape, I would find my dad crying behind his shed after saying his Rosary over her minutes before. Once again I found myself bitter, discouraged, losing Faith and in many ways I thought this was my entire fault. As tears slowly formed in my eyes and frustration began to pour out, I screamed “why God”…”it’s not supposed to be like this”. The meltdowns lead me to contemplating ending my own life.  I couldn’t handle losing the only sister I ever knew, the only best friend I ever had and the only mother I would ever know. Then I began to hate myself for wanting to inflict such emotional agony onto my family. There was a point where nothing could outweigh the tremendous pain deep within me.


Yet I could remember hearing my dad’s voice one morning speaking over the phone to a representative of a new cancer treatment center.  They proceeded to tell him, they had a team of professionals who cover every aspect of the body, mind and soul. They  assured to treat the whole person. We made arrangements to fly to a new community as my mom would continue the battle of ovarian cancer. I couldn’t help but think about the community we were once in and how cold and devastating it was to be a part of. I had lost hope and thought I was flying to say goodbye to my mom for the last time.


Upon arriving my parents and I spent 2 weeks in our hotel room before a plan of action would take place. You could only imagine what those days were like. I would lie in bed with my mom until the pain medicine put her out and then I would hop over in bed  with my dad because I was too afraid to wake up the next morning and find her gone. I didn’t want to be the one to find her first. My dad and I would chat, mostly cry but every night he before we went to bed he would tell me “just keep your Faith” -“keep holding on to your mustard seed”… I remember sticking my hand out in the  darkness of the night and asking God to please hold my hand and give me the strength that I needed. 


The next morning my mother had gone from walking as long as she could to  being helped into the center’s Urgent Care by wheelchair.  The doctor walked in asked if we  minded him saying a prayer over us. He started his prayer by saying “Lord please guide our hands and let us take care of this women and her family”…


At that time, I realized I needed help. I didn’t want to feel alone like so many other times in my life, so in an  attempt to heal myself, I sent an email to the only community I knew that would give me that strength I needed.


Dear, ACT’s sister, Please pray for my family. My mother will have a major surgery to remove all the tangled masses inside of her and will begin chemo shortly after.


I received an email back not from one person but from the whole ACTS community … with just four little words attached …


Trust. Surrender. Believe. Receive.


The next day another email


Trust. Surrender. Believe. Receive.


The next day a phone call from one of my sisters …


“We will be gathering to say a Rosary for your mother, maybe you can step away and say your Rosary at the same time we are, we aren’t with you physically but we will be with you in spirit.”


I will never forget that phone call and I will never forget walking out of our hotel room saying my Rosary that day. After that, I started saying my Rosary every day. I started sleeping with my Rosary. From then on I started walking around the cancer center with flashbacks of my ACTS Retreat. I started singing the songs from my retreat. And yes, one of them was Trust. Surrender. Believe. Receive. It was a reminder of how the Holy Spirit touched me at the time of my retreat and how I was surrounded by love and joy.


My mother’s surgery was a success and the doctors were very pleased but like most cancer patients there is a poison that runs through your veins called chemotherapy that you have to have. Those were the worst days to see my mother’s weight drop  to 82 pounds. There were times that I couldn’t look at her and there were times were she didn’t want anyone to be around her. Her weakness had control of her and at times I would have to lift her tiny head so my dad could spoon feed her. But when you are in depths of despair, when the future looks dim, it is important to recognize this as a gift from God. My broken heart was a special opportunity to turn to him. I now realize why God was calling me to be a part of the ACTs community only two months prior to the worst days of my life. The ACT’s experience has shown this to be true in the outpouring of love from my ACT’s sisters. It  has allowed me to see not only how much I am loved but also God’s beauty in the midst of tragedy. I look back at my retreat and the questions of judgement I took  of “I don’t fit in”, “what am I doing here” have now turned into “this is the community I strive to be like”.  


So what does it look like to live “IN” community? Well, for me, to always feel like a “loner” or a “no name” or like I didn’t matter in this world, my ACTS sisters have shown me that I do matter. The fellowship and strength I have received from this community is like no other. It has been a deeply invested community for me to grow my relationship with GOD when every other community has turned cold and harsh. Undoubtedly this community prepared me for the most trying times of my life, but by GOD, it prepared my soul as well.


If my mom would have been healed instantly, I would have never known about the power of pray and the need for sticking with it and for that I am blessed to be called to live “IN” community with my sisters in Christ. Thank you for letting me be your small child to raise in the village of love and Faith.






Leave a Reply

Your email address will not be published. Required fields are marked *