While discussing N’s donor is still extremely difficult for me, I have found that talking about what happened to him leading up to his transplant has gotten much easier. Talking about his story feels less like I’m speaking about our lives and more like I’m summarizing the plot line to a movie I never want to see again. I’ve become numb to it.
I think a lot of this has to do with telling and retelling the story what must have been hundreds of times to doctors who were trying to figure out a root cause or diagnosis. They would ask me over and over to give them any details I thought would help them figure out what was wrong. And then there was rehashing the story to family members and friends who had only been given vague status updates throughout the process.
Looking back on everything now, it all seems like a horrible dream. It’s like I went to bed one night and woke up to scars all over my baby and piles of medicine in my cabinets and refrigerator. Sometimes I really can’t believe we survived everything. I think the reason it’s easier to talk about N than the donor is because, with N’s story, I have closure. We have our heart and our baby. I don’t have closure with our donor, and I don’t think I can get that closure unless we hear back from them. Until then, we press on with pride, and we answer questions about our donor family as gently and politely as we can.
Now, some people are far more open than I am. Some people share every intimate detail freely and openly. And that is awesome. I admire the strength and confidence of those people. But for those like me that don’t handle sharing that information very well, these questions and conversations can cause a great deal of stress and emotional upheaval. Be patient with yourself if this emotion shows, because coping with these situations can be very challenging. You don’t have to keep it together every moment of every day. I still break down every once in a while when I think about what all we went through and what another family went through to save my N. It’s okay to have those emotions boil over. But there are ways to help this occur less frequently.
Short of just never talking to anyone about it ever (again, the severely introverted part of me longs to have this as an option), the biggest thing you can do is to avoid triggers for those memories. Sometimes this is a lot more easily said than done. In order to do this, you first have to identify your triggers. Then you have to find a way to turn those triggers into something positive; shift your paradigm and how you view those things.
For me, my obvious triggers are certain sounds and common phrases. My sounds are ambulance wails and helicopters. Our room was on the tenth floor, just below the helo pad. It was also at eye level with the helo pad of the building across the street. So all day and all night, we’d hear and see helicopters bringing in people, many of them children just like mine, for admittance. Every time I hear it, the sound of the rotors takes me back to those long nights. Working and living near several military installations, helos are difficult to avoid. So when I hear them coming, I just look up to the sky and focus on the tiniest detail of the aircraft that I can make out. I try to imagine drawing it as accurately as possible, even down to what the serial number would be. This helps me to stay in the present. It keeps “here,” rather than going back “there.”
With ambulances, it’s a little bit more difficult for me. Seeing vehicles respond to ambulances is more of an anger trigger for me. I rode for almost an hour in an ambulance with N after his first cardiac arrest (they let me accompany him on the ride to the PICU ward about 45 miles away), and while we were on the highway, people kept cutting us off and trying to get out in front of us. When we finally got near the hospital, we came up on a traffic light, and the cross traffic wouldn’t stop to let us through the intersection. Those were precious minutes that could have meant life or death to my son. It took everything I had in me to refrain from coming unglued on those morons. Even now, when I’m driving and I hear an ambulance, I panic. I do everything I can to get as far out of their way as possible, and I get infuriated when people take that opportunity to “get ahead” in traffic. I just think, “Where are you possibly headed that is more important than where that ambulance is going?!” I can feel my face flush with anger, and I have to fight to maintain self-control.
So instead of panicking or doing something that will make me end up on the news in a less-than-favorable light, I try to focus on something more entertaining. I try to picture the minions from Despicable Me when they trash Gru’s house yelling “BEE DOO BEE DOO BEE DOO BEE DOO!” This helps me calm down and not go back to that ambulance ride. Unfortunately, it also makes me want to watch that movie, and I don’t own it. So there is that little unintended consequence.
Other unavoidable triggers are some common phrases we come across every day. Even my family uses them. “I can’t wait.” “My heart stopped when…” “Oh, in a heartbeat!” For some reason, these phrases now resonate with me in a negative way. But I can’t stop others from using them. All I can do is rephrase how I use them. “I’m so excited for…” “It startled/scared/terrified me when…” “Absolutely!” Whenever they come up in conversation, I just smile and think of my N NOW. I think of him saying “mama” and climbing around his ball pit and through his tunnel and tent. I try to picture him running all over the house and shaking his tiny hiney to music. This helps me remember that I can’t change what happened or how the world goes on around me. All I can do is change how I react to things. Some days it’s much easier than others. You’ll figure out what works for you, and eventually it’ll get easier.
My worst trigger, though, is seeing women breastfeed. N’s first cardiac arrest happened while I was nursing him. I never really recovered from that. Even after he was healthy enough to nurse again, I was terrified of trying. He never really got interested in it again, because for him, the bottle was the source of milk. Seeing women breastfeed now takes me back to those moments, and it reminds me that I wasn’t able to nurse again after that.
In these times I try to convince myself that it wasn’t my nursing that caused what happened. I try to let my logical side overrule my emotional “what ifs” and remind myself that nursing is a wonderful thing. I also tried to overcome this by fully embracing pumping. I pumped furiously for a year, and I was even able to overproduce. This allowed me to donate 1,212 ounces (almost 9.5 gallons) to the Mother’s Milk Bank of North Texas. This helped me remember that nursing and pumping are positive, and it helped me feel like I was giving back when so many people had given so much to us.
Sometimes, these triggers just get the best of us. But you can also try to beat the blues by finding a healthy outlet, like a hobby. My hobbies are baking and quilting. My mom and I LOVE to bake for the doctors and nurses at N’s ward and his clinic staff. Firstly, it makes us feel like we’re slowly able to repay the kindness and love they showed us, but secondly, it turns the visit into a much less scary, more positive event for me. I don’t focus on the monitors and alarms as much when I’m able to hand out cookies and cupcakes to the staff. It reaffirms that we are guests, not patients anymore.
Scientists have actually proven that hobbies reduce stress. They say that the endorphins released in our brains when we do something we enjoy can actually block out pain receptors, which is why I can quilt for an entire nine hour day before realizing I haven’t eaten anything and my stomach is howling for food. So when you’re having a particularly emotional day, bury yourself in something productive. You’ll work the day away before you even know it!
If you don’t believe me, check out this article. The article states that “’When we are involved in (creativity), we feel that we are living more fully than during the rest of life,’ Csikszentmihalyi said during a TED talk in 2004. ‘You know that what you need to do is possible to do, even though difficult, and sense of time disappears. You forget yourself. You feel part of something larger.’…’He doesn’t have enough attention left over to monitor how his body feels, or his problems at home. He can’t feel if he’s hungry or tired. His body disappears.’”
There’s this one, too. It states “The reward center in your brain releases a neurotransmitter called dopamine when you do something pleasurable. Scientists believe dopamine was originally designed to make us repeat activities that would help the species survive, such as eating and having sex. Over time, we’ve evolved so that the brain can also release dopamine while we’re staining glass or decorating a cake. ‘Dopamine, in and of itself, is our natural anti-depressant,’ Levisay says. ‘Any time we can find a nonmedicinal way to stimulate that reward center … the better off we’re going to be.’”
Find something that makes you happy. Working on that project will help you overcome those darker days, and you may even wind up with an awesome product from your hard work!