Post-NICU Anxiety and PTSD

I think, finally, more than 14 months after life changed drastically, we are settling into a routine. Our routine is different than other families, but it’s routine just the same. Instead of knowing every other mom at Eli’s daycare (I know, I’m the worst), we know all the phlebotomists at the children’s hospital. And instead of calling our pediatrician once in a blue moon to schedule a routine well-check, I have our pediatrician’s personal cell phone number and a host of other doctor’s offices on speed dial (endocrinology, ENT, genetics, neurology, orthopedics, and plastic surgery, just to name a few). As life with a child with different needs becomes routine, I am more able to step back and examine my own constantly changing feelings on our life. One thing I have stressed over and over is that I don’t CARE if Eli has dwarfism. He’s my child and I love him no matter what. He is funny, sweet, (sometimes) cuddly, and the strongest little boy I know. And I realize that accepting his differences is so easy, but accepting my own differences is so not easy. Both for me, and for those close to me.

Yes, I’m talking about mental health. I have struggled with anxiety for as long as I can remember, but it really got serious after Will’s mom died. And I don’t mean everyday “anxiety” over running late to work or forgetting something at the grocery store. I used to experience severe panic attacks every Sunday afternoon driving back to Little Rock from our church in Cabot (the church Kari attended before she died and where her funeral was held). I pulled over on the highway more times than I can count because my face and arms were going numb from lack of oxygen, and I thought I was going to pass out (little known fact: it’s pretty uncommon to ACTUALLY pass out during an anxiety attack, most of the time it just feels like you’re about to). The first time I tried to go into a hospital after I saw Kari in the hospital before her death, I ended up in the parking lot for an hour and a half because every time I attempted to walk through the front doors, I started hyperventilating. I was extremely depressed. I spent a lot of time wishing I was brave enough to kill myself, but I knew I couldn’t do that to Will, and I had read too many stories of botched attempts that left people in comas or brain dead. I texted my friends asking how much they would miss me if I died, but no one understood how bad things really were. I guess I’ve always been a pretty self-assured and strong person (or at least appeared that way?) so no one worried about me. I desperately wanted someone to notice and send me to an inpatient facility, just so I could leave the real world for a little bit, but no one ever did. And I guess I should have asked for help, but it’s easier said than done. I always felt guilty for being so upset and unable to deal with Kari’s death, because she wasn’t even MY mom. If her actual family was handling it, I should be able to as well.

With time, therapy, and drugs (the legal kind…) I slowly got better, but it never went back to how it was before, when I was just a high-strung, obnoxious perfectionist. I’ve had relapses of anxiety over the years, but nothing terrible…until we had the perinatal appointment to figure out if something was really wrong with Eli or if it had been a simple sonography mistake. Realizing it wasn’t a mistake sent me into paroxysms of grief. I was absolutely distraught. I’ve talked about it before, but there are really no words to express how out of touch with reality I was for those three weeks or so until he was born. Then, he was born and we had a couple weeks of respite. But it didn’t last, and we ended up in the NICU when he was two weeks old, and the PICU for skull surgery before he was three months old (that isn’t all of it, of course, but those are our main hospital stays and that’s what I’m focusing on right now).

I’ve read lots of accounts of other parents of children with dwarfism, or children with undiagnosed diseases, and to me they always seem so well-adjusted. I’ve wondered what is so wrong with me that I can’t get to that place. Do I not love Eli as much as I should? Do I just THINK I love him more than anything, but really other parents love their kids more? Am I just bad at being a mom? I never expected I would be overly maternal, but before this I never thought it would be a problem. Why can’t I enjoy my time with Eli rather than begging him to crawl or talk, or looking at him as if he’s a medical mystery I need to solve, or a set of symptoms wrapped up in the packaging of a baby? Then I learned…NICU parents can get PTSD.

Suddenly everything made so much more sense. Reading the symptoms of PTSD, checking off one box after another, I realized the challenges I was (and am) having with Eli’s history and condition are Not. My. Fault. My anxiety had already come back with a vengeance, and it only made sense that I would struggle more than parents who have never dealt with severe anxiety and depression. Add PTSD on top of that and everything just clicked into place. From the very beginning, I’ve had so many people tell me “just don’t worry,” “it’ll work out,” “just pray about it and you’ll feel better,” “why can’t you focus on the good stuff?” And quite honestly, hearing those things makes me feel like even more of a failure in every way possible. I don’t WANT to worry like this. I don’t ENJOY it. I would give almost anything to be a normal person with a normal level of stress and worry. But just like Eli’s bones don’t grow exactly like everyone else’s, something in my brain doesn’t work exactly like everyone else’s, and all I can do is make the best of it. And that’s what I am doing. It may not seem like that to other people, but I try hard every single day. I go to a psychiatrist who specializes in women who have special needs children or unusual circumstances surrounding childbirth, I take medicine, I do breathing exercises when I feel myself getting overly worked up, I try really hard to focus on the good things about our situation and the good parts of our life. For example, I’m so glad we both have flexible jobs that allow us to go to almost all his appointments with him, and I’m thankful we both have the time and the wherewithal to read medical journals and decode information and use it to our best advantage. Not everyone is lucky in those ways. And I believe our society has this weird issue with co-opting grief anyway. Have you ever noticed when you’re telling a story about something bad that happened, to someone who has had something bad happen to them, there’s always a tendency to say “I know it’s not as bad as what you/they/he/she went through” or “I know it could be worse.” Why is that? There’s no reason to put limits on your (or someone else’s) grief. It could ALWAYS be worse. That doesn’t mean things don’t just flat out suck sometimes. I’m guilty of this myself, and I can tell it has made my anxiety even more heightened in our situation. I see parents whose kids are still undiagnosed, and think I shouldn’t be more upset than they are. Or parents who have kids in wheelchairs or kids who will never speak or kids who DIED, and I wonder, if they are handling their situation with grace, why do I still look at pictures of Eli in the NICU hooked up to a billion machines and cry because I’m just so sad about it all?

So, in conclusion, I’m going to stop feeling guilty for being worried about our future and what Eli will experience. This doesn't mean I have a problem with Eli having dwarfism. I don't. If I've learned anything over the past year it's that people with dwarfism are no different than anyone else, they're just shorter and sometimes sicker in other ways as well. As he gets older I’ll obviously try to approach things the right way with him so he doesn’t grow up being worried about everything all the time, but just like everyone tells me not to compare him to other “average” kids, I can’t compare myself to other parents who don’t face the same mental struggles I do. I’m doing the best I can, just like Eli, just like all those other parents, just like all those other kids.

And please, for the love of God, if you find yourself talking to me and Eli comes up, DON’T tell me not to worry.