On Losing Your 4-Hour-Old Grandson

My only child, a daughter, had a complicated pregnancy. The OB/GYN in her mid-sized town was concerned with what he saw and sent her down to Little Rock, AR, two and a half hours away, to go see a specialist. And go she did. Weekly for over a month. At one point they thought they may have to keep her in Little Rock for up to five weeks before they did the C-section.

The reason for the concern is that the baby had something called omphalocele, where some of the organs (intestines, kidneys, bladder) spill out a hole next to the belly button. My daughter knew about her son’s condition early on and with her husband, they were prepared for a five-week stay in Little Rock after delivery while the doctors performed several surgeries to get everything back in place.

But that wasn’t the case the Wednesday morning of her C-section. The baby, Hayden, was delivered, and very soon after the parents learned that their newborn son had lungs that would not support him and that they had a choice to make. Take him off the ventilator, or have him on a ventilator his entire life. That is an incredibly tough decision for a pair of 23-year-olds to make and one which I, at age 54 would want no part of.

The delivery was scheduled for 7 a.m. and when I didn’t hear from anyone after a few hours, I started getting worried and texted them both a couple of times around noon to see what was happening and received no response.

Now I’m one of those Aspies who has a thousand scenarios running through my brain at once. I was overthinking things (as I always do) and finding the most logical reasons for the silence from the new parents. The moment the bad thoughts started arriving, I immediately tried to shut them down, with no success. I did not want to think about the negative possibilities!

Then at 12:54, I received a text from my daughter. I was so excited that I grabbed the phone so fast I almost threw it across the room. I flopped down on my bed about five words into reading it and started balling uncontrollably.

I would read the last part of her text when I felt I was ready to handle it. Once my panic attack dropped back down into single digits and the room stopped spinning, After about a half-hour I was finally able to look at the picture she sent me (the one at the top of the page). Once again, the tears started and wouldn’t stop. In the three weeks since Hayden’s birth, I’ve only been able to quickly glance at the picture a handful of times because doing so starts the tears flowing again.

This was the text from my daughter.

I had the C Section and it went fine but the baby didn’t make it because his lungs were too small. Hayden lived four hours.

The last three weeks I’ve barely eaten, slept no more than 90-minutes a night (in 10-15 minute increments), and have no desire or interest in doing anything. I’ll be blunt. In the past weeks, I haven’t given a rip about anyone, especially myself. That’s why I locked myself away in my log cabin in the Ozarks.

I’ve left the house twice in those three weeks. Once to get the stitches out from my hand surgery the day before the birth and the other to do a grocery pickup at Walmart. I canceled my psychology appointments and anything else I had because I wasn’t ready to face anyone, especially those who knew about the pregnancy and would ask.

Today (Wednesday) it’s getting better and I hope that I can continue on this path of jumping Depression Canyon and staying away from the depression monster. It won’t be easy and I’ve slipped back a few times, but it’s a little progress.

I had my regular telehealth appointment with my psychologist yesterday, and today, for the first time in three weeks, went to the comic book store. That last part probably doesn’t sound like much, but to an autistic nerd such as myself, that weekly visit is one thing I look forward to each week.

Because of COVID, I never got to see my grandson. Never got to touch him or hold him. Please don’t think I’m bitter or that I’m blaming COVID for restrictions like this because I’m not. It’s the new normal and something that has to be done, especially at hospitals. I didn’t like it, but I accepted it.

Still, it doesn’t hurt any less knowing that without COVID, I could have had the chance to hold him, but, rules are rules right now and we have to do what we can to protect patients and staff at our hospitals.

It hurt. A lot. So much so that I spent most of the first week in bed and when I wasn’t in bed, I was either on the couch staring at a wall or in the backyard, staring at the fence. I last took my medicine (including blood pressure and seizure medication) on Monday three weeks after I stopped taking it.

I had a seizure, not a big one, but the biggest one I’ve ever had, the night Hayden died, so stopping it wasn’t the best idea I’ve had in a while.

Yesterday my psychologist asked me why I hadn’t taken them and after thinking about it for a second, I said, “I don’t know. Most of the time I just didn’t care. A couple of times I could have taken them, but I was too lazy (depressed) to get up and do it.”

What people often forget to realize is that we don’t have autism by itself. Depending on the person, we can have ADHD, depression on many levels, and anxiety, both generalized and social. We can also live with post-traumatic stress disorder (PTSD), obsessive-compulsive disorder (OCD), impulse control or many other conditions.

Personally, I deal with severe depression, social anxiety, ADHD, mild OCD and some PTSD from trauma in my younger years. That’s on a normal day. You can imagine what it’s like when stress such as this turns everything up to a 20. Suffice it to say it’s not pretty.

The bottom line is that before this happened, I was already spiraling (pretty depressed and having a hard time focusing), and losing a grandson in this manner, especially one that you never got to meet, just made me cry repeatedly and uncontrollably. In fact, I was crying so hard the other night in the backyard that my nosy neighbor stuck his head over the back fence, scaring a little pee out of me, and asked if I could quiet down.

I won’t share my response with you because as he has a tendency to peep over my fence often and poke his nose where it doesn’t belong, the reply wasn’t very nice.

Please don’t think I’m on J.R.’s Pity Party Boat because I’ve been spending way more time being concerned for my daughter and son-in-law and how they’re holding up. I’ve dealt with tough times and come out of them, but this has to be the biggest thing any parent can face and that’s why I feel so bad for her and her husband.

I know I wasn’t the best dad, but I was far from the worst. Aspies are known for being socially awkward around others, and yes, that includes our families. I had full custody of her since she was 5 and I love my daughter with all my heart. Even though I didn’t always communicate that message well at times, she still knows I love her.

Things are starting to get better, but I’m still going to have to start leaving the confines of my house and start interacting with people again and that scares me. Even more so than normal. I have to be strong and fight through this because if I don’t, who knows how long I’ll be mired in this deep depression.

The longer it goes and the deeper you fall into depression, the harder it is to get out of it. I need to get out of it and try to get back to something resembling a mostly happy J.R. If I don’t, I’m not sure how much longer I can deal with feeling like this and that’s definitely something I do not want to find out.