I was jolted awake tonight in a panic attack. A scene from Daniel’s time in the hospital kept playing over and over again in my head. Even now, sitting here writing this, I feel like I have to purge it from my system somehow. Here’s what happened.
When Daniel was in the hospital after his fourth surgery, which was his 2nd open heart surgery, he struggled for weeks. At the time, he had a paralyzed left side of his diaphragm, but the doctors didn’t know it because it didn’t show up on his daily X-rays. All we knew is that he was struggling day in and day out. He had to be re-intubated twice, and they couldn’t get him off the breathing tube. At one point, the respiratory therapists came in to change some tubing. When they were changing it, the oxygen on the wall wasn’t working, and Daniel went from high flow oxygen to room air. His oxygen saturations plunged extremely low, and he was gasping for air. His back was arched, his face was blue, his neck had veins bulging out. I was standing in the corner, clawing my face, screaming obscenities at the respiratory therapists. They had to bag Daniel to push air into him. The image of Daniel laying there with his back arched, screaming silent screams, turning blue….that is what kept playing over and over and over again in my brain tonight.
Lying in bed, I felt like I couldn’t breathe, like an elephant was on my chest. Every time I blinked, I could see it. Even though it has been four months since this happened, I had to go lay eyes on Daniel in his crib. I touched his little body to make sure he was breathing. I laid back in bed and said to Brian, needing reassurance, “He’s okay, right? He’s home, and he’s okay, right?”
Since we received Daniel’s diagnosis, I have learned just how impossible it is to hide from my feelings. Even when I think I am fine, my body and soul know differently. This week, I was diagnosed with shingles. Last weekend, I felt like I had been hit by a bus. It goes to show my constant state of exhaustion that I didn’t realize I was seriously ill just because I was tired. It took three days for my rash to break out on my back. Since then I have felt like I’ve had the worst flu of my life– extreme fatigue, body aches, cold sweats, my back simultaneously itching and aching. I was prescribed antivirals earlier this week, and I’ve been taking them in hopes of getting some relief.
Now my eye has an infection. I went to the optometrist today to get it checked out. He said he thinks it’s probably shingles in my eye. It’s too suspect that I have an eye infection at the same time I have a shingles outbreak. My symptoms are classic for shingles in the eye. I have redness, itching and discomfort. Basically I want to claw my eye out because it itches and hurts. He’s not 100% sure, though, because I don’t have a rash on my face, so it could be a bacterial infection. He said that the course of action is the same no matter what it is, so I am applying antibiotic ointment, I’m already taking antivirals, and he said I would need to use antiviral eye drops if it gets worse.
I’m 31 years old, and I feel like I am falling apart. I feel betrayed by my body. I don’t have time for this. I have 3 babies to take care of, one who needs constant medical attention–meds, feeds, etc. Why is this happening to me?
One of my friends said, “Staci, it’s crazy what stress can do to the body!” I honestly texted earlier today, “But I’m not even that stressed!”
Not even that stressed? Am I lying to myself, or have I just completely lost sight of “normal”?
The scene of Daniel that I described above…I have thousands like them. Memory after memory of horror. 110 days of constant fear and anxiety. Most of the time, I refuse to think about them. I just try to live in the present and tell myself that Daniel is a completely healthy baby. Yet these panic attacks and flashbacks come back to me sometimes, unbidden.
Things are good now, but I can’t erase all the terrifying moments I’ve seen, all the deep places of despair I’ve struggled through. It’s like I’m living two realities– one in the present with my smiling baby boy, and one in the past in terror that he will die and I won’t be there with him when it happens.
Some days I feel like a ghost of my former self. It is really difficult to be carefree and engage with my friends who haven’t seen what I’ve seen. Even when I am smiling, I am carrying around this darkness, these horrendous memories that force me to relive my deepest fears.
I’ve been struggling recently about how much I should document of Daniel’s journey. I wrote about it in “The End of Anonymity.” Daniel’s story is his. He doesn’t feel defined by his heart defect now, and I know he will be frustrated with his labels in the future. I don’t want him to feel like his life has been co-opted for him before he has a chance to live it.
At the same time, I feel like I have an obligation to share our story. I’ve written before that I feel compelled to share, to give voice to what we have been through. There is something powerfully cathartic about reading words that describe what you have been feeling but have been unable to express, and I want to give that to people who read my blog. I want people who read to know that these feelings are part of the process. You are not alone.
As I’ve struggled this week with my illness, I haven’t known how much to share. I don’t want to be a whiner. It amazes me the things I see people complaining about on social media. I know that it could be so much worse. Even through the discomfort I feel with shingles, the flashback memories, the panic attacks, I feel so incredibly blessed to have another day at home with my children. I am alive. I can sleep in my bed, clean my kitchen, take David to tee ball practice, play dress-up with Hannah, rock Daniel to sleep, and cuddle with my dogs.
I almost wrote the following sentence: In the past I have felt comfortable writing about Daniel’s journey, but when it came time to share my own personal struggles, I hesitated. I deleted that sentence because I realized that I have written dozens of posts documenting my own struggles, so why is writing about my PTSD and my illness difficult now?
I think it is because Daniel is fine. Really. He is so normal. He is rolling everywhere, teething, and growing. He passed his swallow study this week for baby food, so we can feed him all the pureed food he wants. He is on the growth chart now, and his lungs and heart are great. His vocal cord has partially returned function, too, so he is much louder than he was a few weeks ago. He is full of so much joy. He seems to genuinely love people. We have taken him to church twice, and he smiles at everyone he meets.
(Here’s an example of this duality that I live with. When we took him to church the first time, I was filled with so much joy because I was so scared for so long that he wouldn’t make it that far. When he was struggling in the hospital and other babies with CHD were dying around us, I wasn’t sure he would ever come home, much less make it to church. Being with Daniel, David, Hannah, and Brian in church together after being separated from one other so long and then confined to our house…I just can’t tell you how much it meant to worship our incredible God together with our family and friends. When I feel happy, there’s always these terrible memories filled with sorrow that go with them.)
So why was this post difficult to write when I have written about my feelings before? Because this post is about me, not Daniel. Daniel is great, and these are my demons I am sharing. Somehow that feels different. Writing about my feelings and documenting Daniel’s journey while in the hospital is different than writing about weaknesses while Daniel is wonderful. It’s difficult to admit that I’m struggling. It’s difficult to reveal this vulnerability amidst such normalcy.
I decided to write this post because PTSD is part of this journey. I don’t know how I am supposed to live in the present while remembering the past. I don’t know how I am supposed to give my baby over again for another surgery at some point. When I start thinking of all the fears I have, I feel like my mind is going to collapse. I push it all away and shake it out of my brain. Just when I feel like I have moved on, like I am doing okay, like things are getting back to normal, I am laid low by illness brought on by stress.
CHD isn’t a “label” for Daniel. It is his life. He isn’t defined by HLHS, but it is an integral part of his identity, and ours as his family.
Maybe I should learn to embrace that reality and stop running from it.
I hope one day when he reads this, he will know how much of a miracle he is, how much his mom, dad, brother and sister fought and still fight for him, and how proud we are to be his family.