When I Realized I Had PTSD as the Mom of a Terminally Ill Child

With this “new normal” of COVID-19 and losing my support system, it’s been challenging. In light of that, I recently started seeing a new therapist.

• What is PTSD?

If you’re new to therapy or have never been, every time you see a new therapist, your first meeting is what I like to call the “getting to know you” session. It is the easiest of all your sessions because you’re not diving into a full blown session, but it’s still emotionally draining for me. It’s a time for them to hear you out and collectively decided what you want to tackle first.

We touched on a little of everything. Childhood, my marriage, and my parents, my kids, how my relationship is with my family. Finally, we end with the question I dread the most, “Is there anything that you have dealt with in your life that has been extremely difficult?”

I’m not too fond of this question because I am still going through and will continue to go through this challenging experience for the rest of my life. Yes, I am a little touchy about it if you can’t tell.

I am a parent of a terminally ill child. Every single day I grieve my son. It’s hard not to. I get upset watching my son lose skills right before my eyes. It saddens me that he won’t have a typical relationship with his sister and that his life will be cut short due to this devastating disease. I have spent countless days/nights in the hospital trying to comfort him while in pain and crying. I have heard multiple doctors tell me a handful of times they are not sure what will take my son’s life first, his Sanfilippo syndrome, or the many issues that come with his chronic pancreatitis. It has been rough.

After sharing this with my therapist, she added up my scores and the verdict: severe anxiety and a touch of depression. I was not shocked by these findings, especially with losing pretty much my entire support system. What I was a bit surprised to find out is that she diagnosed me with post-traumatic stress disorder (PTSD).

PTSD is new territory for me. You always hear about soldiers returning from deploying overseas having it, or other first responders such as police, firefighters, doctors and nurses. Who would think a stay-at-home mom of a medically fragile child could have it too? I certainly did not until my therapist briefly walked me through all of it.

She asked me if I was ever in a place where I just had to get out because memories flooded me, and I was uncomfortable.  Yes. 

Do I ever get anxious about going and or doing certain things in fear of memories coming back.  Yes. 

Do I ever avoid certain things because I don’t want to deal with it or feel that I am emotionally ready to deal with it?  Yes. 

It all made sense when we got off the phone. I started thinking back on these instances. I clearly remember, one day I was on my way to Target and saw a little boy around my son’s age reach up to hold his mom’s hand in the parking lot. I remember becoming consumed by sadness. My son used to do that, but no longer can. I sat in my car and cried for a good 30 minutes. Once those floodgates are opened it’s hard to close them. I was trying to to muster up the energy to run into the store and get the items I needed, but instead, I drove home. I hadn’t thought back to that day until now.

Every time we go to the hospital to see our GI, I get incredibly anxious. I am on edge two or three days prior, and it’s because we have spent so much time down there, and I have gotten some of the worst news a parent can receive at that hospital. While driving down, it’s like a vault of memories opening, and I cannot help but become anxious and replay old memories. I suppress all of this though as soon as we arrive, because I know my son needs me to help him be at his best. I came to this realization only when asking her more questions about PTSD.

Do I avoid things? All the time. Not going to lie, I have used “oh I can’t grab drinks tonight because the kids aren’t feeling good.” And of course the old, “so sorry I have to cancel, the babysitter called out last minute.”

Why do I do this? Because sometimes just being around other people is draining. Hearing what they are gossiping about or complaining about can send me on a tangent in my mind. Knowing I would not be mentally present because I would become fixated on how they complained about how the barista made their drink at 135 degrees and not the 130 they asked for is not how I want to spend my time. So to me, it’s just easier to cancel rather than go.

Due to all of the difficult medical things we have gone though as a family over the past seven years, it has created a lot of trauma that I haven’t wanted to deal with.

I am just thankful that PTSD is now on my radar, and I can make a conscious effort to change my patterns and work on it. If my son can be brave and face all of his challenges head-on, then so can I.