I am not going to sugar coat it. No one in this world loves my son more than me. No one in this world gets hurt by my son more than me. He pulls my hair, sometimes clumps in his hand. He kicks me, punches, and throws his body with no care forcing me to strain my muscles to the limits while also covering me in bruises. But the thing he does that has caused me the most pain and emotional distress – he bites me.
[…] why would he treat us like this?
The physical pain is no joke. I have scars that I don’t wear with pride, but with a hollow heart and a sense of shame. I have wanted to shave my head on many occasions. I feel foolish as he grabs my hair and not just ruins what was moments before a “good hair day” but terrifies me at the thought of him hurting someone else so quickly and their reaction to that.
My son doesn’t hurt anyone with purpose. My son has no idea he is even hurting you.
Even though I feel the pain from the obvious, it is a more profound pain in my heart that I know others hide in secret. A frustration between your heart, “this is my baby whom I love, I know he didn’t mean it,” to your brain, replying, “no one should have to live this life.”
I looked at a shell of my son, unsure if he was even still in there.
He wasn’t always like this. He was sweet, loving, and honestly, the cutest little angel. When he was at his worst, I didn’t even think he knew we were his parents. People would say, “of course he knows,” but I wanted to believe he didn’t. If he did, why would he treat us like this? I began to dread another day of caring for someone I couldn’t shower with love and attention as I had when he was younger because if I got too close, it inflicted physical pain.
My husband couldn’t take it. He said, “you need to stop.” He blamed me for holding him, hugging him, trying to shower him with love as this little boy kept hurting me more. My heart broke as I wasn’t allowed to be his mother and just stepped into the caregiver role.
I love him so much, and I feel trapped by that.
Being so detached, people would tell me what a wonderful mother I was. I felt like a fraud. Yes, I made the phone calls. Yes, I fought for the services. Sure, I took him to the specialists and did the therapy, but my heart was distant as I looked at a shell of my son, unsure if he was even still in there.
Regression robbed me of my son, or maybe it showed me who he was, what having Phelan-McDermid Syndrome (PMS) truly meant, and this was the life we have to lead. But the thing about regression in PMS, once it rears its ugly head, the chances of another are pretty high…so as we live in a current time of progress, there is the fear that will be lost again.
Mostly I have been disappointed in myself as a mother. I was hurting from the physical and mental wounds. I still hurt. I don’t want to spend the rest of my life being on the defense around my child. I don’t want to be scared of him. I don’t want to feel foolish every time I let my guard down enough that he bites me from giving him a hug and a kiss. But I love him so much, and I feel trapped by that. I’m sure you would think, “of course you love your child!” And to that I say, I wish it were that easy.
I am scared someone will hurt […] him.
I am trapped because I will never give up on him. But there is a toll. Mental and physical exhaustion to be with someone who continues to hurt me over and over, with no choice but to take it, can wear on you. It hurts my marriage. It breaks my daughter to see it. I feel that I have no choice but to detach from my own life to survive and keep my sanity at times.
I am terrified for his future. The thought of him biting, pulling, hurting the wrong person who doesn’t have the patience and love to accept that this is part of loving him, caring for him, tears me up inside, keeps me awake some nights. Part of being severely cognitively impaired, in his case, is the lack of ability to understand and comprehend pain. How could he even begin to understand mine or yours? I am scared someone will hurt, abuse, possibly kill him… no, I am terrified because this happens to cognitively impaired people. It happens to typical people! This is reality, and my living nightmare.
Here we all are. It’s been nine months of 24/7 everyone being home. When he pulls my hair again or bites me, I think about some other mother out there; the same thing is happening to her. She loves her child, and her child is hurting her. She is scared but always strong. She is tired but pushes through. She is kind to everyone, even though she has every reason to be angry at the world. I think of this person. I wonder if I might know her, but she is silent and will never tell anyone her truth. I know she dreads changing another diaper, and the next fat lip from a child she knows didn’t want to hurt her but did.
I know she is out there – because I am her.
I have no choice – this is my life.
I have NEVER felt more seen. Athen, 9 PMS, has been kicking my ass for years and sometimes I think there can’t possibly be anyone out there dealing with such a severe unique situation. Thank you. I’ll be taking comfort in thinking you are also out there living this.
Juli, thank you so much for reading and sharing. I wanted to share so that others didn’t feel that feeling of being alone, because that has been the most difficult part for me. Feeling like I live two lives somedays, the “facebook” version and reality.
Thank you for sharing this, Joanna. You are not alone. Our boy is 9, and the sweetest, dearest boy. And he has given me so many bruises. My ring finger is still doing this strange thing where I think nerves are reconnecting. I’ve learned the vicissitudes of bruises – how a bite can hurt the worst and leave barely a mark, while another little nip leaves a huge black mark. The cheeks, the back of the upper arm – I think those hurt the worst. Thank you for bringing light to this painful topic.
Sarah, sending you a big virtual hug. My son too grabs at your heart, and you let your guard down, and the regret wells into your soul. I feel fortunate I was able to share in a way that is helping others to feel a little less alone in this. Thank you for your comment.
My daughter has low tone, and does not cause too much physical pain, but the constant hitting, biting, kicking, pinching… it wears down my soul. A lot of days I wake up and wish I could just stay in bed, or have a couple days off from this life. I love my daughter so much, but dread when she wakes up. I’ll do anything for her, but I feel like I’m not even me anymore, I’m just an exhausted caregiver, trying to make it through the day without falling apart. And my two neurotypical kids get whatever tiny scraps are left over of me.
Jessica, this resonates with me so much. Low tone, or hypotonia, doesn’t mean they aren’t strong, that has been something I have been learning the hard way at times. Loving our children and taking this level of physical pain can be a level of exhaustion that tests our stamina over and over in ways I don’t think either of us thought possible. I am so sorry for your struggle, I wish I had the answer to what the future holds for us all.
I really identified with all aspects of this podcast. Kathryn is 32 and has Shank 3 point mutation – a duplication, which was only recently diagnosed. She is currently in care with the Autism association. All the feelings you expressed in the podcast are exactly what I’ve gone through. It is a very isolating journey. We continue to advocate for Kathryn. Our visits each week are only brief. She is happy to see us but then after a couple of minutes she pushes us from the room and becomes aggressive if we don’t leave. We then drive the hour back to our home. We keep persisting but it is so sad and unrewarding.
I understand the persistence and realize this is a marathon. Thank you for sharing, and I am glad I could put to words something you could identify with.
There is light at the end of this seemingly endless tunnel… Hang on. This too shall pass. Hugs and silent tears.
Thank you so much for the kind words.
I just read this and it made me cry. You are a superhuman angel! I wish I had words of advice, or even comfort. All I can say is you sound incredible and I am sending you a BIG VIRTUAL HUG!!
Thank you so much. I am always learning, and I want to share, so others don’t feel as alone as I have often felt in this journey.