Every child you have changes your life, but some change it more than others. Our third son, Colin, who was diagnosed at the 20-week ultrasound with four congenital heart defects (CHDs), turned my life upside down.
Colin was born via C-section on October 20, 2009. He was with us for 100 days after his open heart surgery at Children’s Hospital of Michigan when he was 9 days old. He fought long and hard to come home with us, but it didn’t happen. Nothing went how anyone expected and he confounded us all. He struggled from the very first night of surgery when we nearly lost him and every day after that in the Pediatric Intensive Care Unit (PICU) was a battle against congestive heart failure.
To cope, I threw myself into advocating for him: researching, reading and immersing myself in anything relating to CHD. I would review his flow charts and all of his blood work. I practically became a secondary nurse, so much so that doctors and nurses meeting us for the first time would ask if I was one. That is how fluent I had become in medical jargon, but really, I was just a mom grasping at any chance to exert some control over this truly out-of-my-control situation. I didn’t want to miss a possible solution to any of his complications.
Life with Colin was a roller coaster: short, fast, exciting and terrifying. After it was over, all I wanted was to do it again.
The loss of my son is the single most transformational event of my life, but in the beginning those changes were often for the worse. The day after his funeral in February 2010 was the day that my emotions seemed to get turned off—like water at a spigot. I was completely numb for a year. I went to work and took care of my kids. Hell, I even managed to get a new job during this time. Knowing all of that, I look back and realize there are complete chunks of that year I don’t remember. I don’t know if I’ll ever remember.
On the bright side, I threw myself into the CHD community. My husband Mike and I began assembling and delivering comfort bags to Children’s Hospital for the CHD organization It’s My Heart. I was constantly looking for ways to connect with people who had lost children to CHD. We did a 5k walk to benefit It’s My Heart and I joined the planning committee for a walk the following fall. I put most of my energy into charity work to try to make meaning from our loss; to make sure he wasn’t forgotten. The rest of my energy was dedicated to making sure my kids’ lives stayed as normal as possible.
Back on the dark side, however, I stopped taking care of myself. I ate too much, sat too much and wasn’t taking my medication properly. I have Factor V Leiden which is a clotting disorder and also had a Deep Vein Thrombosis in my right leg in 2007. I am on lifelong anticoagulation and I should have switched to an oral anticoagulant, but I insisted on remaining on injections. In November 2010, I wound up in the hospital recovering from the pulmonary embolism I ended up with as a result of my noncompliance. As soon as I was home, I soldiered on and stayed busy. No stopping, no resting and burying feelings.
Colin died on February 7, 2010, which coincidentally, is the beginning of Congenital Heart Defect Awareness week. During that week in 2011, I was loaded up with commitments for fundraising and awareness efforts. Our state senator was introducing a resolution to officially recognize February 7-14 as Congenital Heart Defect Awareness Week in Michigan.
The senator was going to talk about Colin on the senate floor and I was ecstatic, but I was also exhausted. I was tired of running from the grief and it caught up with me when the week ended. I woke up in the middle of the night with a start—I felt as though I was having hot flashes and my heart was racing. I realized later that it was a panic attack, but my brain was convinced it was a heart attack.
After ending up in the ER with absolutely nothing wrong with me, I realized I needed help. I had spent so much time helping others and concealing my pain by staying busy that I had completely forgotten about me. I reached out to a therapist and finally allowed myself to grieve fully. I had coped through trying to control everyone and everything in an effort to make up for a situation that had been totally out of my control: Colin’s too-brief life.
The therapist helped me to see my desire to control everything. He asked if it would really hurt to stop doing and start being. So I began to meditate again. I began to let things go again. I began to start livingmy life instead of just doing my life. With that, the floodgates opened: there were tears, rages and meltdowns, but the difference was—it was all OK.
In the desperate need to channel everything that was coming out of me, I started to write again. I started with little bits and then began filling pages. I wrote poems, songs, essays and blog posts; I began to find my voice again. I began seeking opportunities to help others through my writing and through the organizations I had been involved with all along.
In the past year, I’ve increased my involvement with advocacy and awareness now that I am able to feel and live my life fully. I began writing for an online magazine and I was privileged to appear in the documentaryTransforming Loss. I’ve begun working on a memoir of our time with Colin and I’ve finally started to take care of my health. I’m compliant with my medication and I’m a boot camp regular. I’ve shed 15 lbs. and 5% body fat since January 2013.
I don’t know where I would be if it weren’t for Colin. I wish every day that he was here with us, but I know he wants me to be strong, happy and healthy. Languishing in mourning and anger after his loss wasn’t getting me there. Facing the loss head on, helping others on his behalf and placing him squarely in my heart to carry with me for the rest of my life—that is what has gotten me there.
For Colin Timothy Kain
10/20/2009 – 2/7/2010
Rachel works in IT and is on the walk committee for Tomorrow’s Child. She has spoken to legislators on their behalf.
She recently became the Advocacy Chair for the Michigan chapter of the Children’s Heart Foundation, serves on the parent advisory board for Baby Heart Screening, continues to write for Still Standing Magazine and has her own blog, Writers Write.
Her dream is to write full-time and be able to spend more time with her children, Ethan and Austin, her husband and her efforts to help others.