The Guilt That Doesn’t Go Away

A smile plastered to my face, I silently scout the room. Quietly, I observe. I watch faces, I listen for whispers, I note reactions. My instincts are heightened in any social situation, especially ones involving interactions with other families and other children. I am a protective mama bear watching over her cub like a hawk.

Guilt. According to Psychology Today: “When one causes harm to another, guilt is a natural emotional response. Guilt is self-focused but also highly socially relevant: It’s thought to serve important interpersonal functions by, for example, encouraging the repair of valuable relationships and discouraging acts that could damage them. But in excess, guilt may needlessly burden those who experience it.” I know I am not alone when I tell you that I, a special needs parent (I don’t like that term) live with that emotion every single day of my life.

Most special needs (did I mention that I really dislike that term) parent would tell you the same. I remember when I would avoid social situations because I was worried about what other parents would think of my son’s behavior. I am so ashamed to write that. I remember I wouldn’t post certain videos that highlighted my son’s delays or strange behaviors. Again, ashamed. We tend to create these expectations of our lives, of our kids’ lives, before we/they even have the opportunity to live them out.

We didn’t try to get pregnant. In fact, we were actively trying to prevent pregnancy. So when I missed my period (which literally never happened), I still didn’t think much of it and bought TWO bottles of wine along with the box of two pregnancy tests at Target. Stress, I figured. I was in a Master’s program and it was my final semester which required a lot of work, and attributed my extreme fatigue and missed period to that. Shocker: it was not stress.

Definitely surprised, but totally accepting, we moved forward with the pregnancy, buying all the baby things and loving doctor’s appointments. I wasn’t scared the first pregnancy. I loved feelings his kicks and I didn’t mind gaining weight. So. Much. Weight. The pregnancy itself was uneventful. Labor was an entirely different story.

Caden was well past his due date when I woke up to bleeding. They had talked about inducing since he was over 41 weeks and I was already over 4 centimeters dilated, but I wasn’t hopeful that he was coming that day. My dad had flown in from the east coast, and my husband was at work. I told my dad I was going to the Emergency Room since my doctor told me I needed to, but that he should stay home. I was sure they would just do a check, tell me the bleeding was normal, and send me home. But my dad insisted he go with me, and when I got to the hospital, I found out I was having contractions that I didn’t feel. So the process began.

And here is where I start to blame myself. Blame (turned guilt) can feel like a wildfire running through your body if you let it. It can consume you to the point of crippling your entire mind and body.

Caden’s labor was rough. Since I didn’t feel the contractions, they had to add Pitocin. I wanted a natural, vaginal birth and this wasn’t working out how I had envisioned. (Expectations, man. They’ll get your every time.) I didn’t want the epidural, because again, expectations. So I sat there and writhed in the most excruciating pain until midnight (over 12 hours of active labor) when I asked for the epidural. Of course there was only one anesthesiologist working because of the hour, and he was in an emergency surgery. So I waited a few more hours, and then the glorious epidural was delivered.

I remember after that I was able to rest off and on, but nurses were constantly coming in and moving me from side to side because Caden’s heart rate would decelerate constantly. And blood. There was so much blood. The nurses were constantly changing the pads I was lying on because they would become soaked in blood. Looking back now, I wish I would have spoken up. It didn’t feel right. But what did I know? I was a first time mom and these were the professionals. BLAME.

Finally, once the doctor got to the hospital in the morning, they told me I was able to push. I could not feel a single thing. I hated it. If you know me, you know I can’t stand to feel out of control. But I couldn’t feel anything. I had asked the nurses earlier to turn off the Pitocin since mine was on a constant drip, but the nurses never turned it off. So, it was what it was. I spent 3 hours (yes, THREE) trying to push Caden out of my vaginal canal. He was stuck. SO stuck. I remember praying in between each time the doctor would read the machine to see when I was having contractions to tell me to push. The doctor warned if we didn’t get Caden out she would have to use some forceps contraption and repeated the risks loud. “Chance of defects, chance of blindness, deafness, death…” I just remember Justin whispering in my ear the I could do it. I remember feeling so tired, and unsure if I was able to do it. Finally, Caden came out sunny side up, eyes wide open (which explains the extreme back pain).

The NICU team was waiting in the room because of the rough labor and the issues with Caden’s breathing but cleared him relatively quickly. After that, I felt like things were “normal”, and we went home and tried to adjust to having a newborn baby. There were a lot of things I look back on now and recognize as larger issues than I believed them to be at the time. I remember telling my mom early on that I think something was different with Caden and she laughed and reminded me that I was a hypochondriac (true).

Life went on like usual. Caden had unique health issues from early on that impacted his growth and development. You don’t necessarily notice the impact early on, even if you start to recognize that things just aren’t “right”. You start to see some differences during mommy and me playdates. You see differences at the park, watching other kids interact. Smaller playdates were the worst. Your friends’ kids start walking, then talking, and you start to notice delays. You question what you did wrong and what you could have done differently. Some days, in some situations, the pain hurts more than other times, or lasts longer than it used to. Honestly, I don’t think that ever goes away. I think the more you see your child struggle or suffer, the more you try to assume fault because it makes us feel a little less powerless.

So here I am, looking around the room, watching other kids interact with one another. I see one little boy pick another for his partner in a game, and another pair find each other, and my husband stand up and eagerly tell Caden he will be his partner. I see two little girls find each other for another activity, willingly seeking one another in unison. Caden doesn’t know any different, and excitedly joins in the game with his dad as his partner. I keep a smile on my face and cheer Caden on excitedly as my husband’s eyes find mine and I know he knows. In that moment, Caden thinks there is nothing better in the entire world than his dad being his partner. And in that moment, that single moment. as the guilt creeps up and feels hot in my stomach, I am OK with that.

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