Cancer Mom

The guilt and responsibility I carry being a cancer mom is sad. I know none of this is my fault and it is all out of my control, but there is still a part of me that feels so responsible for this.

I had a huge break down, or should I say release, with Antonio this morning - I’m just mad at cancer and the world. And I feel like that is what Javi is harvesting deep down inside of him. The past month or so (about the time I got my drains removed) he has been a ticking time bomb. You have no idea when he is going to explode and when he does prepare for destruction. Hitting, kicking, screaming, biting, the works. Also in this month, when we do roses and thorns at night, he only talks about his thorns and how this day is the “worst day ever.” No roses. He typically talks about his bouqet of roses, but lately, its a bundle of thorns. My little boy is feeling such big things and it is so hard for him to communicate it. I got a little sense of his world this morning when I had my huge release with Antonio. Afterwards, he looked at me, and said, “I was concerned for you. Twice. Are you okay?” In another entry I’ll try to explain that cathartic release because that has to do with cancer and intimacy (oh boy!). Going back to Javi, a release that big (and this release was that big ugly cry that you can’t control) felt so good for me, but yet, being adult, I still can’t put words to what happen. Was I in control of it? Nope, it just took over. Was Antonio a deer in the head lights, yup. Luckily, mine wasn’t anger and I was not hitting and kicking saying this is the worst day ever, but it was uncontrollable tears, and someone who just needed to be held, held tightly.

That is my Javi Bear right now. His behavior is uncontrollable when at home. After he has these huge releases, he then wants to be held and we hold him and rock him and tell him how much we love him.

I hate this so much. I hate watching my child be so dysregulated and mad. I hate that he can’t communicate that to me. I hate that feeling of not being able to meet his needs because what he wants is for mommy to be “normal” again to be able to play and have energy. His tantrums are exhausting. I have voices from the outside world telling me “control your child” “make him sit and eat” “quit coddling him.” Then I have voices within me saying “love him more” “hug him more” “he feels so out of control, give him ways to feel in control” “play with him more.” Then I have the other voices “I’m out of energy” “I can’t move like that yet” “I wish I could, but I can’t.” It is so hard. I know deep down he wouldn’t be behaving like this if I didn’t have cancer. We would have typical behaviors with typical tantrums, but not daily ones that last hours. It breaks my heart. It has emotionally worn all three of us out.

I’m so grateful for Wonders and Worries. We reached out to them for help. And they were amazing. His therapist believes these behaviors are caused from his anticipatory anxiety of the unknown, when will this happen, what will it be like, when will I “get chopped from mommy again?” She doesn’t have any huge concerns for him and expects the tantrums to go down after my surgery. That was such a huge relief to hear. She also gave us some ideas on how to make the concept of time more concrete for him. He doesn’t know when October 8th is. So as we’ve been talking about my upcoming surgery, he knows about it and what will happen, but we think he was getting lost in the “when.” Wondering is this the day, nope, is this the day, nope.

So I created a count down chain so he now knows exactly when my surgery is. I also created him a calendar with pictures so he knows exactly where he will be and who will be watching him the first two weeks. If I get to it, I will also make pictures of things he is looking forward to after my surgery like Trick or Treating, Thanksgiving, Sonic 3 at the movies (that’s a big one), Christmas, etc. Let me tell you all, he has stared at both of these resources numerous times this weekend. At first, he asked me multiple questions and now he’ll just look at it and make a comment here and there. I really do feel like this has helped ground him and allowed him to know where he is in time. This weekend, we had zero tantrums!!!

I also decided to make Saturday a special Mommy Javi day, since he really hasn’t had much quality time with me since this whole ordeal started, accept for movie watching and video game playing. So on Saturday, I cleared my schedule AND my mind (that was probably a critical one) to be 100% present with him. For me, that day was about being with him and having fun. He got to choose what we did and what we ate. He got to feel a sense of control, something he probably hasn’t felt in a while. We met up with my family at Bevo Blvd, came home for a power rest, went to the Austin FC game, and then had a slumber party in mommy’s bed (Antonio was in Houston attending the Weezer concert with his bro-in-laws)! It was such a fun day for the both of us. I probably needed it just as much as he did. I feel like there is a new air between us. Hopefully this trend stays through the week!

The exhaustion of trying to heal my body, hold space for my own mental health, and being present for Javi is real, not to add on also trying to be a partner. Through this experience, I feel like I have a lot more empathy for the parents I work with. I have done everything by the book, even when Wonders and Worries provided us with strategies, we were like, doing that, doing that, doing that, any other ideas? We can’t stop the tantrums without understanding the why. And sometimes the why is out of our control and we just have to struggle together until we get to the other side. All three of us can do better with not having the why take over, but when we get tired, it gets hard. I’ve learned to have grace with myself and not beat myself up for not being present with him. I once heard in a training that to have a secure attachment you need 33% present, 33% rupture, 33% repair. For the part of me that is a perfectionist, I struggle with these stats. I’m like, no 100% present, if you are present then no rupture, then no need for repair. But that’s not being a human. We cannot be present 24/7, there will be ruptures, what’s important is how we come together after the ruptures to repair. And I do believe, we are owning it in that department. It is during the repair, when the secure attachment gets stronger. So if this theory works out, we should be an extremely strong family unit after this!!