Ashly Collins - A Caregiver's Honest Heart
"I have a daughter named Brixton. She just turned 5. She is the sweetest, smartest little girl (and also sometimes super sassy). Looking at her you think "oh how sweet is she?" "She's so small and cute". These are all true statements in my opinion. If you don't know us, you don't know her story...and that's ok. Let me give you some background: when B was 6 weeks old she got a fever and as a first time mom I freaked. I took her to the ER and they transferred us to a pediatric hospital. There they just followed a 48 hour protocol of testing and antibiotics. During the x-ray they informed me Brixton had a cyst in her lungs...nothing to worry about, we just need to get it removed. No big deal...let's schedule surgery. We met with a pediatric surgeon who removed the cyst the day she turned 6 months old. We were told everything was great! Well, the next day the surgeon called me at 8pm and informed me "pathology came back, your daughter has a slow growing cancer"...WHAT?!?! That's right, when B was 6 months old she was diagnosed with cancer. As you can imagine this rocked my world. Every negative thought a mother could have went through my head: "My daughter is going to die." "How do I enjoy the days I have left?" "I need to quit my job." "I'm never going to be a grandma." "I won't see her graduate." On and on the thoughts went. They never stopped. After that call we started meeting with her oncologist and decided next steps. Brixton would undergo 14 rounds of chemo. 5 days after her 1st birthday she had surgery to place her port and we started our journey. I'm not going to take you through all of the details of her chemo days....I want to talk to you about how this all affected me: the caregiver.
Of course during the time of her treatment I felt like the strongest woman I knew. I was working full time and making weekly hospital visits to keep my daughter alive. People would tell me all the time how strong I was, and how they couldn't do it...blah blah blah. Let me tell me something: IF YOU THOUGHT YOUR KID WAS DYING YOU WOULD BE STRONG TOO! There was no other choice. I had to be her voice and her advocate. So I would speak up to the doctors and nurses when I felt something was off. I would get no sleep so I could take care of her and still complete my actual work. I didn't travel for work that year and sometimes I still think that's impacted my career. But that's ok, my priorities were straight: keep my daughter alive. During her time at the hospital I almost lost my feelings of being sad. The nurses and doctors became family. We made friends. We felt safe there. They were amazing. I remember feeling hope and thinking "ok we are going to be able to move past this!". When all was said and done B finished her chemo was declared NED: no evidence of disease. I thought "YES! It's over." Boy, was I wrong.
While you're in it, you move through the motions and for some reason you are able to remain hopeful and almost happy. It's the years after her treatments that everything started to come to light. After treatment Brixton had to start having CT's every 3 months to ensure she was NED. They have to put her to sleep EVERY time. Great, new fears: "Is she going to wake up?" "What if it's back?" The anxiety...or in the cancer world, scanxiety was real. I would be ok in between appointments, but man, every 3 months I would be a mess. I remember getting on an airplane to go to a work event and the hospital called me to tell me they found a spot on her liver that we need to monitor. " ARE you kidding me????" Again I was a mess. I diagnosed myself with PTSD...I should probably go see a professional, but I don't have time. As I look back on all of this I can start to see the affects it's had on me. I have the most extreme fears: "We are going to get into a head on collision." "She's going to choke on her food." She had a slight fever a few days ago and slept all night and all day and my first thought was "her blood count is low, I need to call the hospital." Most parents would think "she might have a cold, let her sleep." I constantly think my child is dying. I am insanely over protective. I freak out when she plays on playgrounds, I HATE when anyone has to drive her other than me. When I travel for work I have to FaceTime her every morning and night to make sure she is alive, because I believe something horrible will happen because I'm not there. These are not healthy thoughts and I know it. I have become depressed at times, where I don't want to do anything, go anywhere or focus on anything. If you know me, that is the opposite of who I am.
It's difficult to talk to people about these feelings I have because they are so irrational. So I tend to keep them to myself. This builds up resentment and has not helped. I'm also scared of being judged or labeled because of these feelings. I get so bummed because I'm not the same aggressive, strong, independent woman I once was. Honestly I feel so fragile and like I'm always trying to keep it together. Being a caregiver when in the moment is almost easy. How this is affecting me now is hard. I know I will never be the same. I will ALWAYS be scared of the cancer coming back. I will ALWAYS worry that my daughter isn't progressing at the rate she should be. I will ALWAYS worry about any bumps, bruises or fevers. I will continue to be hyper-aware of her behaviors to try to catch any side effects of the chemo. I will never be the same. I just hope people can accept me now.
There were a few lights that came from these trials. About a year and a half ago, during a really low point, I felt like I couldn't handle this anymore and wasn't sure what to do. Something stirred in me and I decided to try out a new church by my house. The pastor there was amazing. We ended up talking and becoming quite close. He asked why I started coming to church and I told him I couldn't do this on my own anymore. The burden was too heavy and I needed the Lord to guide me. Church and the family and I have there has been so helpful. When I get too upset or overwhelmed they are always there for me, to listen and sometimes to watch my child so I can get some me time.
If you are a caregiver or you know a caregiver...know that it's tough. Sometimes it's unbearable. I believe we will be ok. We need support, love, a shoulder to lean on. There are some serious ups and downs. Find GREAT friends. Find a GREAT church. Just find something GREAT that works for you. Talk about it. Don't hold it in. Understand life will never be the same and it's how we respond to our situations that will dictate how we feel. Offer help to caregivers. Caregivers, just say "yes" and accept the help! Pray for each other. Get the help you feel you need.
I will continue to work through my ups and downs...I will never give up. I'll figure out my new normal eventually. My hope is that we can all be a little kinder and just start treating people like people. Let's care for each other and help each other. Little acts of kindness go a long way."
Brixton, happily walking the hospital halls with dad and mom in hand
Thank you, Ashly, for opening your heart to us and teaching us to understand the strength and patience it takes to be a caregiver. You and Kyle are truly special humans. Brixton is always in our prayers.